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Caring for older people

The following resources examine caring for older people, and the needs associated with ageing.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).
 

Resilience and burden in caregivers of older adults: moderating and mediating effects of perceived social support

BACKGROUND: The burden of caring for an older adult can be a form of stress and influence caregivers' daily lives and health. Previous studies have reported that resilience and social support play an important role in reducing physical and psychological burden in caregivers. Thus, the present study aimed to examine whether perceived social support served as a possible protective factor of burden among caregivers of older adults in Singapore using moderation and mediation effects' models. METHODS: We conducted a cross-sectional study with 285 caregivers providing care to older adults aged 60 years and above who were diagnosed with physical and/or mental illness in Singapore. The Connor-Davidson Resilience Scale (CD-RISC) was used to measure resilience and burden was measured by the Zarit Burden Interview (ZBI). The Multidimensional Scale of Perceived Social Support (MSPSS) was used to measure perceived social support. Hayes' PROCESS macro was used to test moderation and mediation effects of perceived social support in the relationship between resilience and burden after controlling for sociodemographic variables. Indirect effects were tested using bootstrapped confidence intervals (CI). RESULTS: The mean scores observed were CD-RISC: 70.8/100 (SD = 15.1), MSPSS: 62.2/84 (SD = 12.2), and ZBI: 23.2/88 (SD = 16.0) respectively. While perceived social support served as a full mediator between resilience and caregiver burden (β = - 0.14, 95% CI -0.224 to - 0.072, p < 0.05), it did not show a significant moderating effect. CONCLUSIONS: Perceived social support mediates the association between resilience and caregiver burden among caregivers of older adults in Singapore. It is crucial for healthcare professionals, particularly those who interact and deliver services to assist caregivers, to promote and identify supportive family and friends' network that may help to address caregiver burden.

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The invisible workforce during the COVID-19 pandemic: Family carers at the frontline [version 1; peer review: 2 approved]

This is an open letter to acknowledge the essential and increasingly challenging role unpaid family carers are playing in the COVID-19 pandemic. The letter is written by members of the CAREWELL team, a HRB-funded project that aims to promote health and self-care behaviours among working family carers. Family carers provide care to family and friends in the community who need support due to old-age, disability and chronic illness. In many cases, family carers are supporting those who are considered most at risk in this pandemic meaning carers must reduce their own risk of infection in order to protect their dependent family members. The temporary reduction of some home care services, as well as school and creche closures, means that family carers are providing increased levels of care with little or no support. At a time when both worlds of work and care have been dramatically transformed, we wish to shed light on those who are currently balancing paid employment with a family caregiving role. We argue that there is much to be learned from the recent work restrictions that could benefit employees, including working family carers, beyond this pandemic. We also wish to build on the potential positives of a transformed society and encourage policy makers and employers to focus on what is currently being implemented, and to identify which measures could be used to create a bedrock of policies and practices that would offer robust and effective support to family carers. It is hoped that family carers will receive greater recognition for the significant role they play in society, providing essential care and alleviating the strain on health and social care systems, both during and post the COVID-19 pandemic.

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Can We Hit Two Birds with One Stone: An Effectiveness Study of Peer-support Groups for Low-income Spousal and Adult Children Caregivers of Hong Kong Older Adults

This study aims to assess the effectiveness of peer support groups for low-income older adults’ caregivers in the Hong Kong community. It compares the effectiveness of peer support groups on spouse and adult children caregivers. The peer support program was structured into three stages, including six training sessions for peer specialists, eight caregiver support group sessions, and non-structured informal contact. The study adopted a quasi-experiment design supplemented with qualitative data collected from focused group interviews. It involved a user group of 58 participants and a control group of 42 participants. Both quantitative and qualitative data were collected before, after the peer support groups, and at a three-month follow-up. The quantitative results showed that the peer support program was more effective in promoting social support for adult children caregivers but not for spousal caregivers. Three focus group interviews suggested that the community-based peer-support group could be helpful to improve stress management, emotional regulation skills, and social networks of the caregivers. Based on the research findings, we discuss the various needs of spousal and adult children caregivers, provide recommendations for service providers and practitioners to consider homogenous group services to address the diverse needs of spousal and adult children caregivers. 

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Family Long-Term Caregivers' Lost Productivity Cost: A Research Study

Population aging and issues surrounding family caregiver costs are worldwide trends and concerns. In this study, family caregivers lost productivity cost due to elderly care over time was examined and factors affecting lost productivity were analyzed. Based on these findings, the welfare system as related to the elderly should be re-evaluated, and concrete and realistic countermeasures developed.

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Examining the effects of activities of daily living on informal caregiver strain

Objectives: This study examines the factors associated with caregiver strain experienced by informal caregivers of older people, using data from Ireland. Methods: The analysis is based on a sample of 1394 informal caregivers obtained from Ireland’s Quarterly National Household Survey (2009). The Caregiver Strain Index is used to measure caregiver strain on a scale from 0 to 13. The analysis focuses on estimating the association between caregiving activities (measured using Activities of Daily Living) and caregiver strain, using multivariate regression analysis. Results: Overall, 60% of informal caregivers report feeling strained. The results suggest that different types of caregiving assistance are associated with increasing caregiver strain, in line with Pearlin’s conceptual model of Stress Process theory and Process Utility theory of informal care. Female caregivers have significantly higher levels of strain. Moreover, caregiver strain amongst co-residential caregivers is 0.8 points higher compared to those who are non-resident. Conversely, caregivers over 65 years are less prone to strain than younger caregivers. The condition of the dependent is also a statistically significant factor: caring for someone with a physical condition, a mental condition or both a physical and mental condition, increases caregiver strain. Conclusions: As Ireland and Europe’s populations are ‘greying’, sustainable systems and supports need to be designed to meet demand for care that limit strain for caregivers. In doing so, policymakers and their advisors need to better understand the impact of informal caring on caregivers.

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Emerging Issues of Intelligent Assistive Technology Use Among People With Dementia and Their Caregivers: A U.S. Perspective

The increasing number of older adults with cognitive deficits, including dementia, poses a major challenge for public health in the United States. At the same time, the limited number of informal and professional caregivers available to support this rapidly growing population is of mounting concern. Not only does population aging limit the number of potential caregivers, but extant caregivers often lack skills to provide quality care. The integration of intelligent assistive technologies (IAT), including devices, robotics and sensors in many forms, into eldercare, may offer opportunities to reduce caregiver burden and enhance healthcare services while improving the quality of life among older adults with mild to severe cognitive deficits. However, many caregivers and their care recipients lack access to these technologies. The reasons for this reduced access are multifactorial, including the digital divide, sociocultural factors, and technological literacy. This mini review investigates the emerging use of IAT available to caregivers and older adults with cognitive deficits and explores the challenges in socioeconomic status and technological literacy as well as ethical and legal implications that should be considered in the design and development of IAT for older adults with cognitive deficits. Drawing from existing literature, it will suggest frameworks for design and adoption aimed at increased and equitable access for this vulnerable population. 

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Perceptions About Technologies That Help Community-Dwelling Older Adults Remain at Home: Qualitative Study

BACKGROUND: The population of Europe is aging rapidly. Most community-dwelling older adults (CDOAs) want to remain in their homes, particularly those experiencing functional decline. Politicians and academics repeatedly praise technological instruments for being the preferred solution for helping older adults with deteriorating health to remain at home. OBJECTIVE: This study aimed to understand the perceptions of CDOAs and their informal caregivers (ICs) and professional caregivers (PCs) about technologies that can help keep older adults at home. METHODS: This qualitative study used personal interviews, focus groups, and photo-elicitation interviews to better understand the perceptions of a convenience sample of 68 CDOAs, 21 ICs, and 32 PCs. RESULTS: A fraction of CDOAs did not perceive technological instruments to be a very useful means of helping them remain at home. However, the ICs and PCs were more positive. The CDOAs preferred and were more willing to adopt technologies related to their mobility and safety and those that would help slow down their cognitive decline. The ICs preferred technological aids that assist in the activities of daily living as well as safety-related technologies for detecting falls and helping to locate disoriented older adults. The PCs preferred integrated communication and information systems to improve collaboration between all stakeholders, housing equipped with technologies to manage complex care, high-performance ancillary equipment to transfer people with reduced mobility, and surveillance systems to ensure safety at home. CONCLUSIONS: Although our study reports that CDOAs have limited interest in innovative technologies to help them remain at home, their technological skills will undoubtedly improve in the future, as will those of ICs and PCs. Technological tools will play an increasingly important role in home health care. ©Henk Verloo, Thomas Kampel, Nicole Vidal, Filipa Pereira. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 04.06.2020.

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The association between activities of daily living and long hours of care provided by informal caregivers using a nationally representative survey in Japan

Highlights

  • We determined the relationship between long hours of care and the assistance in each activity of daily living (ADL) element.

  • The assistance in wiping of the body, dressing and toileting were significantly associated with longer hours of care .

  • To support caregivers effectively, it is important to consider the kinds of ADL elements of the care recipients.

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Reduced family care burden by using a communication robot: Case report

Here, we report that the use of a baby‐type robot (Smibi; Togo Seisakusyo, Aichi‐gun, Japan) helped improve the healing process and reduce the care burden of an aged woman undergoing home‐visit rehabilitation.

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The experiences and perspectives of family surrogate decision-makers: A systematic review of qualitative studies

Objective: Surrogate decision-makers play an increasingly important role in the lives of older adults who have lost their ability to make decisions. Currently, there is a lack of evidence to support family surrogates in making a variety of decisions. Additionally, a greater understanding of family caregivers’ experiences and perspectives toward making surrogate decisions is needed. Methods: This study employed a qualitative systematic review and thematic synthesis of the research evidence using the methodologies of the Joanna Briggs Institute (2014) and Thomas and Harden (2008). Results: Decisions were classified per three main types: intensive care treatment, end-of-life treatment, and placement. Six themes were identified concerning surrogates’ experiences: struggle and reluctance, seeking reassurance, communication with healthcare professionals, family support, older adults’ wishes, and negative impact. Conclusion: Family surrogates often lack adequate preparation and education regarding decision-making. Quality communication between surrogates and healthcare providers helps reduce the anxiety and guilt experienced when making surrogate decisions. Further research is required to elucidate these experiences with more cultural and racial nuances. Practice implications: This review informs healthcare providers’ awareness of the challenges faced by surrogates and fosters improved surrogate decision-making experiences.

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Challenges Faced by Family Caregivers: Multiple Perspectives on Eldercare

The focus of this study was to identify challenges to family eldercare provision from the perspectives of both caregivers and community stakeholders. This qualitative study used data from 306 family caregivers and 116 stakeholders (aging, social, and health service professionals who work with older adults and their families) in North Dakota. Data sources included an American Association of Retired Persons-ND survey of 110 caregivers, a survey by the ND Family Caregiver Support Program (196 participants), and a Statewide Caregiving Stakeholder Survey (116 participants). Thematic analysis identified five themes: (a) financial burden of providing eldercare, (b) insufficient access to respite care, (c) difficulty finding and navigating available services and programs, (d) lack of knowledge and training on care provision, and (e) challenges related to environmental context of caregiving. Implications for working with family caregivers and developing policies for eldercare are discussed.

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Intergenerational Relationships, Family Caregiving Policy, and COVID-19 in the United States

Families and intergenerational relationships are important sources of risk for COVID-19 infection, especially for older adults who are at high risk of complications from the disease. If one family member is exposed to the virus they could serve as a source of transmission or, if they fall ill, the resources they provide to others could be severed. These risks may be especially heightened for family members who work outside the home and provide care, or for those family members who care for multiple generations. Policies have the potential to help families bear the burden of these decisions. This essay argues that policies that address health, employment, and other social issues have implications for families, and that policies aimed at families and caregivers can affect the health, employment, and the general well-being of the nation.

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Spousal Caregiving in Community Settings in Canada: Implications for Nursing Professionals

Objective: Spousal caregivers report significantly more health effects and psychological consequences than caregivers of aging parents. Traditional approaches to assist these caregivers often include lifestyle approaches with a lack of health promotion initiatives. Consequently, alternative approaches to facilitate the adaptation to the social context of spousal caregivers' experiences are needed. Method: This article systematically reviewed literature on spousal caregiving in Canada using a health promotion approach. Nine peer reviewed articles were identified from the health and social care literature and critically analyzed for relevant themes. Results: Gender, social support, health care, and income emerged as themes in the literature published to date. Discussion: The article concludes with directions for future research in Canada and suggested solutions for family nursing practice.

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Caregivers’ burdens and barriers in accessing healthcare services for dependent elders in Thailand

Background: Elders report poor health status and a greater need for healthcare services; however, in Thailand there are barriers in accessing healthcare services for these individuals. Objective: To study the health status of dependent elders in Thailand, the barriers in accessing health services for them, the impact resulting from these barriers, and the impact on caregivers when taking care of dependent elders. Materials and Methods: The study was conducted in 4 provinces in Thailand: Nonthaburi, Pathumthani, Ayutthaya, and Lopburi. Data were collected from 243 home-bound and bed-bound elders and 124 caregivers. The research tools both qualitative and quantitative parts were used to interview dependent elders and their primary caregivers. Results: The study found that 96.5% of the dependent elders had chronic disease comorbidity with non-communicable. The barriers in accessing health services included long waits for healthcare services, transportation expenses to these services, medical expenses, no mobility support or body assist tools, no accessibility to information, unawareness of their rights in terms of medical treatment, and caregiver issues. These barriers affected the dependent elders regarding their physical and mental health and financial issues. Moreover, taking care of dependent elders had the impact on caregivers in terms of physical and mental health, family relationships, social participation, and financial issues. Conclusion: There are still barriers in accessing health services for dependent elders. Furthermore, taking care of them is caregivers’ burden. Therefore, caregivers should be supported. 

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Trajectory of psychosocial measures amongst informal caregivers: Case-controlled study of 1375 informal caregivers from the English longitudinal Study of ageing

Informal caregivers provide vital support for older adults living in the community with chronic illnesses. The purpose of this study was to assess the psychosocial status of informal caregivers of community-dwelling adults over an eight-year period. Informal caregivers of adult care-recipients were identified from Wave 1 of the English Longitudinal Study of Ageing (ELSA) cohort. Multivariate regression analysis models were constructed to assess the association between participant's psychosocial characteristics and informal caregiving. Multilevel modelling explored the psychosocial changes between caregivers and non-caregivers over eight years. 1375 informal caregivers and 2750 age-matched non-caregivers were analyzed. Self-reported loneliness (Odd Ratio (OR): 0.26; 95% confidence intervals (CI): 0.01-0.51) and relationship status (OR: 0.36; 95% CI: 0.16-0.46) were independently associated with caregiving. Caregivers were more socially isolated with less holidaying abroad (OR: 0.51; 95% CI: 0.35-0.66), attendance to church (OR: 0.30; 95% CI: 0.11-0.49), or charity groups (OR: 0.35; 95% CI: 0.14-0.55). On multilevel analysis, over time (eight-years), caregivers reported greater loneliness (p < 0.01), change in relationship status (p = 0.01) and reduced control, autonomy, and pleasure (p ≤ 0.01) compared to non-caregivers. Given the deleterious effects caregiving can place on health and wellbeing, further interventions are required to improve these psychosocial factors.

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Social support, social participation, & depression among caregivers and non-caregivers in Canada: a population health perspective

Objectives: The study used data from the Canadian Longitudinal Study on Aging to investigate the relationships among social support (measured as affectionate support, emotional/informational support, positive social interaction, tangible support), social participation and depression in caregivers and non-caregivers. Method: Hierarchical multiple regression was used to investigate relationships among social support, social participation, and depression. Analyses of variance were used to examine differences in the means of social support, social participation, and depression between the two participant groups. Results: Higher levels of affectionate support, positive social interaction, and social participation were associated with lower depression scores. Social participation was a significant mediator of the relationship between caregiver status and depression. Caregivers reported significantly higher levels of affectionate support, emotional/informational support, positive social interaction, and social participation than non-caregivers. There were no between-group difference in depression scores. Discussion: The study provides support for the beneficial role of social participation in preserving caregiver mental health. Results are discussed in the context of policy and practice implications for caregivers in Canada. 

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Resuming Normal Life as a Family Caregiver During Drip-Like Recovery of Older Persons With Cognitive Impairment Recovering From Hip Surgery: A Grounded Theory

Purpose: This study was undertaken to develop a theoretical framework explaining family caregiving processes for older persons with cognitive impairment recovering from hip fracture surgery. Design and Methods: In this grounded theory study, data were collected in audio-recorded face-to-face interviews with 21 family caregivers. Among these caregivers, 14 cared for hip-fractured persons with cognitive impairment, and seven cared for those without cognitive impairment. Caregivers were interviewed five times after patients’ discharge: at 1 week and at 1, 3, 6, and 12 months. Data were analyzed by constant comparative analysis. Findings: The core category explaining the family caregiving process for hip-fractured persons with cognitive impairment was “resuming normal life during drip-like recovery.” This category captures the slowness of the recovery process, as slow as dripping water. During the early postoperative period, caregivers attempted to gain control of the postoperative situation, using various maintenance and improvement strategies to deal with the chaos in individuals and the family and to protect hip-fractured persons with cognitive impairment from further harm. The goal of recovery was to get back to their original life. Conclusions: Family caregivers of hip-fractured older persons with cognitive impairment needed to deal with more complex chaotic situations, exerted more efforts to administer safety measures, and required more time to achieve a stable life pattern. Clinical Relevance: Since postoperative recovery was perceived as extremely slow, family caregivers of hip-fractured older persons with cognitive impairment should be patient regarding recovery and be informed before hospital discharge of different strategies to resume normal life during postoperative recovery. 

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Quality of life among caregivers of people with end-stage kidney disease managed with dialysis or comprehensive conservative care

Background: To measure health-related and care-related quality of life among informal caregivers of older people with end-stage kidney disease (ESKD), and to determine the association between caregiver quality of life and care recipient's treatment type. Methods: A prospective cross-sectional study was conducted. Three renal units in the UK and Australia were included. Informal caregivers of people aged ≥75 years with ESKD managed with dialysis or comprehensive conservative non-dialytic care (estimated glomerular filtration (eGFR) ≤10 mL/min/1.73m2) participated. Health-related quality of life (HRQoL) was assessed using Short-Form six dimensions (SF-6D, 0-1 scale) and care-related quality of life was assessed using the Carer Experience Scale (CES, 0-100 scale). Linear regression assessed associations between care-recipient treatment type, caregiver characteristics and the SF-6D utility index and CES scores. Results: Of 63 caregivers, 49 (78%) were from Australia, 26 (41%) cared for an older person managed with dialysis, and 37 (59%) cared for an older person managed with comprehensive conservative care. Overall, 73% were females, and the median age of the entire cohort was 76 years [IQR 68-81]. When adjusted for caregiver sociodemographic characteristics, caregivers reported significantly worse carer experience (CES score 15.73, 95% CI 5.78 to 25.68) for those managing an older person on dialysis compared with conservative care. However, no significant difference observed for carer HRQoL (SF-6D utility index - 0.08, 95% CI - 0.18 to 0.01) for those managing an older person on dialysis compared with conservative care. Conclusions: Our data suggest informal caregivers of older people on dialysis have significantly worse care-related quality of life (and therefore greater need for support) than those managed with comprehensive conservative care. It is important to consider the impact on caregivers' quality of life when considering treatment choices for their care recipients. 

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Effectiveness of respite care via short-stay services to support sleep in family caregivers

Family caregivers of older people who need care often experience sleep disorders, which can lead to various health problems. Although respite care is used in many countries, its effectiveness has not been fully demonstrated. We analyzed the sleep of family caregivers using actigraphy and heart rate spectral analysis to clarify changes in their sleep characteristics during short-stay respite care. Participants were all family caregivers living with an older person needing long-term care. The outcomes consisted of questionnaire responses, sleep/wake records, and R-wave to R-wave interval records. Quantitative evaluation of sleep revealed that caregivers’ median sleep time was 378.0 min, and median sleep efficiency was 94.7%. The low frequency (LF)/high frequency (HF) value was 1.722 for total sleep and 1.822 for the first half of the sleep period. The LF/HF for the first half of the sleep period was significantly different between caregiving and respite days. The respite day LF/HF was 1.567, which was significantly lower than on caregiving days. On respite days, cardiac sympathetic nervous activity among family caregivers was reduced during the first half of the sleep period. This suggests that regular use of short-stay services can improve caregivers’ sleep status, making this an effective form of respite care. 

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Oral Health Assessment by Lay Personnel for Older Adults

Oral health is an often-undervalued contributor to overall health. The literature, however, underscores the myriad of systemic diseases influenced by oral health, including type II diabetes, heart disease, and atherosclerosis. Thus, assessments of oral health, called oral screenings, have a significant role in assessing risk of disease, managing disease, and even improving disease by oral care. Here we present a method to assess oral health quickly and consistently across time. The protocol is simple enough for non-oral health professionals such as students, family, and caregivers. Useful for any age of patient, the method is particularly key for older individuals who are often at risk of inflammation and chronic disease. Components of the method include existing oral health assessment scales and inventories, which are combined to produce a comprehensive assessment of oral health. Thus, oral characteristics assessed include intraoral and extraoral structures, soft and hard tissues, natural and artificial teeth, plaque, oral functions such as swallowing, and the impact this oral health status has on the patient's quality of life. Advantages of this method include its inclusion of measures and perceptions of both the observer and patient, and its ability to track changes in oral health over time. Results acquired are quantitative totals of questionnaire and oral screening items, which can be summed for an oral health status score. The scores of successive oral screenings can be used to track the progression of oral health across time and guide recommendations for both oral and overall health care.

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Psychometric evaluation of the German version of a social support scale of FAFHES (Family Functioning, Family Health and Social Support)

Background Family members often need to be supported in informal care of the elderly and desire to be involved into care planning and decision‐making. Valid and reliable instruments are needed to measure how family members perceive the care and support they receive from nurses for older family members living at home.  Aim The purpose of this study was to translate the 20‐item social support scale of the Family Functioning, Family Health and Social Support (FAFHES) questionnaire from English to German and test the validity and reliability of the scale among Swiss‐German‐speaking family caregivers of home‐dwelling elderly people who receive home healthcare services. Methods A cross‐sectional study was conducted to test the empirical and psychometric properties of the translated and culturally adapted version of the social support questionnaire. A factor analysis with the principal component analysis PCA was used to test construct validity. The internal consistency of items was measured with the Cronbach`s alpha coefficient. Results After a rigorous translation process the original 20‐item questionnaire was adapted into a 19‐item version and tested with family caregivers (n = 207) of home‐dwelling elderly. Psychometric testing of the German version of the social support questionnaire revealed that the three factors – affirmation, affect and concrete aid – were congruent with the original questionnaire. The accounted variance was 79.5% and the internal consistency determined by the Cronbach's alpha was 0.973. Conclusion The German version of the social support scale of the FAFHES questionnaire is a valid and reliable instrument to assess family perceived support on three dimensions – affirmation, affect and concrete aid – received from nursing professionals. The questionnaire should be tested further in other German‐speaking populations.

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Massive Open Online Courses: enhancing caregiver education and support about dementia care towards and at end of life

As the ageing population grows globally, the need for informal care-usually provided by family and friends-will continue to increase. Numbers of people with dementia also continue to rise, and much of their care will be provided by relatives. As such, more people who may themselves be older, will take on such caring roles. Consequently, more carers are likely to have education and support needs. Amidst government recognition of the need to provide good quality, person-centred education and support to carers, there are tensions between the potential for such provision to be resource intensive and whether existing services have the capacity to meet the needs of carers. Massive Open Online Courses (MOOCs) are a resource with scope to meet some of these educational and support needs. MOOCs enable flexible learning, are often free, and can be accessed anywhere in the world. Providing supportive dementia care requires carers to have an understanding of the condition, assistance to cope with the responsibilities of caring, and recognition of the importance of their own health and wellbeing as well as the person they support. In response to the needs of family carers of people with advancing dementia identified through a 5 year programme of research, we developed a MOOC-dementia care: living well as dementia progresses. This is an accessible source of relevant and engaging information; which enables carers to learn about advancing dementia, consider their own needs and create an interactive global forum of peer support. 

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Utilization and costs of formal and informal care, home adaptations, and physiotherapy among older patients with hip fracture

Aims: This feasibility study investigates the utilization and cost of health resources related to formal and informal care, home adaptations, and physiotherapy among patients aged 60 years and above after hip fracture from a multicentre cohort study (World Hip Trauma evaluation (WHiTe)) in the UK. Methods: A questionnaire containing health resource use was completed at baseline and four months post-injury by patients or their carer.completion rate and mean cost of each health resource item were assessed and sensitivity analysis was performed to derive a conservative estimate of the informal care cost. All costs are presented in 2017/18 pound sterling. Results: A total of 4,183 patients from the WHiTe cohort completed the baseline questionnaire between May 2017 and April 2018, of whom 3,524 (84.2%) completed the four-month health resource section. estimated mean costs of formal and informal care, home adaptations, and physiotherapy during the four months following injury were £2, 843 (sD 5, 467), £6, 613 (sD 15, 146), £706 (sD 1, 706) and £9 (sD 33), respectively. Mean cost of informal care decreased to £660 (sD £ 1,040) in the sensitivity analysis when informal care was capped at 17.2 hours per day. Conclusion: Informal care is a significant source of costs after hip fracture and should therefore be included in future economical analyses of this patient group. our results show that there is considerable variation in the interpretation of time-use of informal care among patients and further work is needed to improve how data regarding informal care are collected in order to obtain a more accurate cost estimate. 

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Digital Mental Health Tools for Caregivers of Older Adults-A Scoping Review

Aim: Informal caregivers have an important role in bridging the gap between the assistance care recipients need and what can be provided by the health care systems across Europe. The burden of the caregiving role places a significant threat to caregiver health, and the vast majority of caregiver's report stress and emotional strain, depression, and increased rates of chronic diseases. In line with this, strengthening the caregiver's mental health is one of the main goals for optimal caregiving. Caregivers already struggle with the demand of their role while coping with health problems, social, family, and work obligations. The solution for the caregiver's mental health needs to be accessible, low cost, and time-effective. This scoping review investigates digital mental health tools available as a mean of supporting the mental health of caregivers. Method: Databases searched include Summon search box, the Cochrane Library, and PubMed. Three groups of keywords were combined: relating to digital mental health interventions for caregivers, digital mental health interventions and stress in elderly care, and digital mental health interventions and burden in elderly care. Results: Caregivers reported that digital mental health tools have an overall positive role in their health. Coping skills, emotion regulation, skill building, and education are found to be important aspects of digital mental health tools. There was a noted lack of digital mental health apps available specifically for the caregiver of older adults. Furthermore, the digital mental health tools, divided into three categories in this review, focused either on building skills or educating caregivers and assisting with the duties rather than the mental health of the caregiver itself. As repeatedly suggested in the reviewed studies, digital mental health interventions overall contribute to reducing the caregiver burden with a limitation of addressing one aspect of caregiver needs -i.e., specific coping skills or education regarding illnesses such as Alzheimer's disease and Dementia. The lack of all-encompassing, data and theory-driven digital mental health tools for addressing and supporting the caregiver's mental health is evident.

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Caregiving for Community-Dwelling Older Persons in South Korea: Current Formal and Informal Care Use and Expectation

The aim of this study is to examine formal and informal care use among community-dwelling older Korean adults. Older adults aged between 65 and 85 (N = 516) in mid-size city, selected using the probability proportional sampling method, were interviewed in person. One third reported having at least one caregiver. Compared to respondents who did not use any informal/formal care, those who used any formal or informal care were older and were more likely to be prefrail or frail and experienced at least one hospitalization or emergency department use in the past year. Living alone or being experienced with any hospitalization was associated with formal care use. Most care recipients received informal care from families, specifically spouses. Among participants who received no formal/informal care, 19% of them expected to receive formal care support in the future. Substantial support programs for informal caregivers are needed to address the increase in demand and expectation for long-term care.

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Participant and Caregiver Perspectives on Clinical Research During Covid‐19 Pandemic

BACKGROUND/OBJECTIVES The COVID‐19 pandemic has massively disrupted essential clinical research. Many regulatory organizations have rightfully advocated to temporarily halt enrollment and curtail all face‐to‐face interactions. Views and opinions of patients and their caregivers are seldom considered while making such decisions. The objective was to study older participantsʼ and their caregiversʼ perspectives to participate in ongoing clinical research during the COVID‐19 pandemic. DESIGN Cross‐sectional. SETTING VISN‐16/Geriatric Research, Education and Clinical Center (GRECC), Department of Veterans Affairs. PARTICIPANTS Older participants and their caregivers (N = 51) enrolled in ongoing clinical research studies. MEASUREMENTS Questions about perceptions of safety to attend research visit, the level of panic among the general public, and medical centerʼs preparedness in handling the pandemic. Other questions identified the source of pandemic information and the preference of a phone or in‐person visit. RESULTS Mean age was 69.3 (±9.4) years, 53% were male, 39% were caregivers, and 65% were Caucasian. Majority (78%) of the participants felt safe/very safe attending the scheduled research appointment; 63% felt that the extra screening made them feel safe/very safe; 82% felt that the medical center was prepared/very prepared for the pandemic. Participants split evenly on their preference for phone versus in‐person visits. Family members and television news media were the commonly used sources of pandemic information irrespective of their education. Perceptions were influenced by gender and source of information, not by age or education. Females perceived higher level of panic compared to males (P = .02). Those relying on news media felt safer compared to those that relied on family members (P = .008). CONCLUSION Even though informants felt that the medical center was prepared to handle the pandemic, only half the participants preferred the in‐person visit. Pandemic information was obtained from family members or the television news media. Knowing patientsʼ perspectives may help researchers be better prepared for future pandemics.

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Effect of an innovative model of complexity care on family caregiver experience Qualitative study in family practice

Objective To investigate the experiences of family caregivers who participated in an innovative model of interprofessional team-based care specifically designed for elderly patients with complex care needs. Design Qualitative study. Setting Large academic family practice in Toronto, Ont. Participants Family caregivers of elderly patients who had attended the IMPACT (Interprofessional Model of Practice for Aging and Complex Treatments) clinic (N=13). Methods Individual semistructured interviews, which were conducted faceto-face, audiorecorded, transcribed verbatim, and analyzed using the constant comparative method. Main findings Family caregivers who attended the IMPACT clinic believed it enhanced caregiver experience and capacity. Caregivers experienced increased validation and engagement with the treatment team. Feelings of isolation were reduced, resulting in increased confidence and greater feelings of empowerment in their caregiver role. Conclusion White the needs and value of caregivers are increasingly acknowledged, health care teams continue to struggle with how to relate to and engage with family caregivers-how best to support them and work with them in the context of their family members' care. Interprofessional teams who adopt the IMPACT model-providing synchronous, real-time interventions that include the caregiver-can facilitate increased caregiver capacity, confidence, and empowerment.

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Informal support for people with Alzheimer's disease and related dementias in rural Uganda: a qualitative study

Background The generation of people getting older has become a public health concern worldwide. People aged 65 and above are the most at risk for Alzheimer's disease which is associated with physical and behavioral changes. This nurtures informal support needs for people living with dementia where their families together with other community members are the core providers of day to day care for them in the rural setting. Despite global concern around this issue, information is still lacking on informal support delivered to these people with dementia. Objective Our study aimed at establishing the nature of informal support provided for people with dementia (PWDs) and its perceived usefulness in rural communities in South Western Uganda. Methods This was a qualitative study that adopted a descriptive design and conducted among 22 caregivers and 8 opinion leaders in rural communities of Kabale, Mbarara and Ibanda districts in South Western Uganda. The study included dementia caregivers who had been in that role for a period of at least 6 months and opinion leaders in the community. We excluded trained health workers. Results The study highlights important forms of informal support offered to PWDs such as support in activities of daily living, enabling access to medical attention, recovering misplaced items, provision of herbal remedy, informal counseling, and sourcing carers from other families to offer presence and support in the hope to impact positively on behavioral outbursts and the frustration of living with dementia. Conclusion The study revealed various forms of informal support that are available for PWDs in South Western Uganda and stressed the role of caregivers and the perceived usefulness of the care provided.

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The influence of swallowing impairments as an independent risk factor for burden among caregivers of aging parents: A cross-sectional study

Informal caregivers can experience high levels of burden, negatively impacting both the caregiver and care recipient. The presence of dysphagia (swallowing impairments) in care recipients is suggested to contribute to increased caregiver burden. The purpose of this study was to describe the type and severity of caregiver burden experienced by adults caring for community-dwelling older parents reporting symptoms of dysphagia. Using surveys from the National Health and Aging Trends Study and the National Study of Caregiving, data from 895 adults providing care for an aging parent were analyzed. Binary logistic regression analyses revealed that swallowing difficulties reported by a parent is a significant independent predictor of increased physical and emotional burden in their caregivers. Forty percent or more of these caregivers reported moderate to severe physical and/or emotional burden. Suggestions are provided to identify dysphagia early on and to provide supports for caregivers.

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Self-compassion as an applicable intervention target for family carers of older adults: A conceptual commentary

Extract: Caring for an older family member can be a challenging and stressful experience, and there is a need to better support family carers in their role.(1) Drawing on a rapidly growing body of research conducted with various population groups, (2) there is reason to suggest that psychological interventions that target self‐compassion could be particularly relevant in supporting family carers of older adults. Yet, research exploring self‐compassion within this population is currently very limited, (3) and the potential theoretical underpinnings of self‐compassion as an intervention and/or form of support for this group have not been explored. Within this paper we outline, for the first time, a conceptual rationale for why self‐compassion is an applicable intervention target for family carers of older adults. In doing so, we situate the discussion within current understanding and evidence about family caregiving stress and use an emotion regulation framework to explore the mechanism of change though which self‐compassion may positively influence carer health outcomes. This conceptual commentary is intended to encourage and guide research in a new and rapidly developing area and, to this end, we provide a series of considerations for future research to extend current understanding....

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Migrant caregivers of older people in spain: Qualitative insights into relatives’ experiences

The traditional structure of families is undergoing profound changes, causing the so-called “crisis of family care.” This study describes the experiences and emotions of the family member who hires migrant caregivers for the older people. This is a qualitative study using a phenomenological design with nine women participants between 53 and 72 years of age. The data collection was carried out through two in-depth interviews and a focus group. There were three major topics: (1) the women in this study recognized that they were not able to take care of the family member directly, due to their responsibilities as female workers and mothers. The fact that migrant caregivers were chosen was conjunctural, where economic reasons were more important. (2) The family members supported the caregivers by teaching them about care and also resolving conflicts produced by culture shock. (3) Trusting the caregiver was a gradual process; the family members felt a complex set of emotions (insecurity, gratitude for the help, moral obligation). In conclusion, they wanted a caregiver who would provide the elder dependent with the love and compassion that they, as daughters, would provide if they had time to do so. The family became the caregiver’s managers and assumed the responsibility of training and helping them. 

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Unmet needs of family caregivers of hospitalized older adults preparing for discharge home

Objectives: To describe unmet needs of caregivers of hospitalized older adults during the transition from hospital back home, and identify subgroups with different needs. Methods: Patients and family caregivers were recruited from an acute care hospital in Montreal, Canada. Measures included Instrumental Activities of Daily Living (IADL), Hospital Anxiety and Depression Scale (HADS), Zarit burden scale, and Family Inventory of Needs. Dimensions of unmet needs were explored with principal component analysis; regression tree models were used to identify subgroups with different unmet needs. Results: A total of 146 patient-caregiver dyads were recruited. Three categories of caregiver unmet needs were identified: patient medical information; role clarity and support; and reassurance. Caregiver subgroups with highest unmet needs were those with high burden of care plus depressive symptoms (n = 46) and those caring for patients with low IADL scores (n = 10). Discussion: Caregivers with high burden and depression are those with the greatest unmet needs during the care transition.

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Eldercare hours, work hours and perceived filial obligations

In this paper, we take a fresh look at the magnitude of the trade-off between caring informally for a parent and paid work. We adopt a simultaneous approach with a primary focus on how hours of care are influenced by hours of work rather than the other way round. We also investigate the role that filial obligations play in choices of caring versus working. Using the SHARE data (2004 and 2006) we find that the elasticity of informal care hours in response to working hours is between −0.17 in the caregivers sample and −0.19 in the women-only caregivers sample; small but not negligible. Moreover, we find that a 10% increase in the index measuring the strength of filial obligations increases weekly hours of care by about two and a half hours. 

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Receptivity of Hospitalized Older Adults and Family Caregivers to Prognostic Information about Aging, Injury, and Frailty: A Qualitative Study

Background: Frailty is the leading prognosticator for poor outcomes and palliative care among older adults. Delivery of negative prognostic information entails potentially difficult conversations about decline and death. Objective: The study aims were to: 1) examine hospitalized older adults' and family caregivers' receptivity to general (vs. individualized) prognostic information about frailty, injury, and one-year outcomes; and 2) determine information needs based on prognostic information. Design: Provision of general prognostic information followed by semi-structured interview questions. We deductively analyzed qualitative data within the context of problematic integration theory. Setting: An academic medical center in the Southeast region of the U.S. Participants: Purposive sampling was utilized to obtain a distribution of patients across the frailty continuum (non-frail [N=10], pre-frail [N=9], frail [9=6]). Twenty-five older adults (≥ age 65) hospitalized for a primary injury (e.g. fall) and 15 family caregivers of hospitalized patients were enrolled. Methods: Hospitalized older patients and family caregivers were shown prognostic information about one-year outcomes of injured older adults in the form of simple pictographs. Semi-structured interview questions were administered immediately afterwards. The interviews were audio-recorded, transcribed, and analyzed using qualitative content analysis. Demographic and medical information data were used to contextualize the responses during analysis. Results: Overall, participants (patients [56%], caregivers [73%]) were open to receiving prognostic information. A small number of family caregivers (N=3) expressed reservations about the frankness of the information and suggested delivery through a softer approach or not at all. Qualitative data was coded using categories and constructs of problematic integration theory. Four codes (personalizing the evidence, vivid understanding, downhill spiral, realities of aging) reflected probabilistic and evaluative orientation categories of problematic integration theory. One code (fatalism vs. hope) represented manifestations of ambivalence and ambiguity in the theory; and another code (exceptionalism) represented divergence and impossibility. Two codes (role of thought processes, importance of faith) reflected forms of resolutions as described in problematic integration theory. Information needs based on prognostic information revealed four additional codes: give it to me straight, what can I do? what can I expect? and how can I prevent decline? A consistently reported desire of both patients and caregivers was for honesty and hope from providers. Conclusion: This study supports the use of general prognostic information in conversations about aging, injury, frailty and patient outcomes. Incorporating prognostic information into communication aids can facilitate shared decision making before end-of-life is imminent. 

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The social and economic burden on family caregivers for older adults in the Czech Republic

Background: In this paper, we analyse the economic burden of elder care in the Czech Republic by assessing how family members of senior citizens engage in caregiving. To do this, we examined the time and cost associated with caregiving as a function of age, gender, and income of the caregiver. Methods: A questionnaire comprising 17 items was used to gather data from 155 informal caregivers whose seniors are affiliated with 200 registered home care agencies. Spearman rank correlation was adopted to analyse how caregivers' income, age and gender influences the costs accrued and time spent in caring for elders. The expenses are divided into direct and indirect. Publicly available sources are used to establish expenses on treatment and medication, which cannot be determined by the questionnaire survey. Results: Results show that around-the-clock care is the most common. Spouses of care recipients make up the highest number of caregivers, and women represent the largest portion of this group. Additionally, the more the time spent caring for an elder, the higher the cost associated with such care. The total annual burden of informal caregivers is determined by the sum of annual average indirect costs, amounting to € 36,888, and annual direct costs, amounting to € 2775, resulting in a total of € 39,663 per year. Conclusion: Czech social policymakers should begin to consider better packages for caregivers in the form of incentives and other monetary benefits to improve living standards and care for ageing seniors. 

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The Development of a Quality of Life Scale for Informal Carers for Older Adults

Background: The aim of the study was to develop a multidimensional quality of life instrument suitable for use among individuals across cultures who have an informal care role for older persons. Methods: Participants were informal carers of older adults in the United Kingdom (n = 308), United States (n = 164), and China (n = 131). We carried out exploratory and confirmatory factor analyses of 61 items derived from the eight-factor Adult Carers Quality of Life Questionnaire with newly added items to define both traditional and nontraditional informal care roles. Results: Findings suggest a 24-item quality of life scale with a six-factor structure to caring for older adults that assesses (a) exhaustion, (b) adoption of a traditional carer role, (c) personal growth, (d) management and performance, (e) level of support, and (f) financial matters. Conclusion: We present a new scale to assess the multidimensional aspects of quality of life among those caring for older adults.

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Factors related to the burden of family caregivers of elderly patients with spinal Tumours in Northwest China

Background Family caregivers of elderly patients with spinal tumours experience considerable pain and burden during the care process. This study aims to investigate the factors associated with caregiver burden in family caregivers of elderly patients with spinal tumours. Methods A total of 220 elderly patients with spinal tumours (age >= 65 years) hospitalized at the spine centre of our hospital from January 2015 to December 2017 and their family caregivers were recruited for this cross-sectional study. All participants completed a sociodemographic questionnaire. Caregiver burden, social support and self-efficacy were assessed by the Chinese version of the Zarit Burden Interview (ZBI), the Social Support Rating Scale (SSRS) and the General Self-Efficacy Scale (GSE), respectively. The factors related to caregiver burden were analysed by multivariate analysis. P < 0.05 was considered statistically significant. Results The 216 elderly patients with spinal tumours were 71.59 +/- 8.49 years old, and their caregivers were 70.46 +/- 9.13 years old. A total of 170 patients were cared for by their spouses, who accounted for 78.7% of all caregivers. The ZBI score for the family caregivers was 35.5 +/- 7.5, and most caregivers (84.5%) reported a moderate or heavy burden. The factors related to caregiver burden included patient paralysis, the primary cancer site, chemotherapy and/or radiation, cognitive dysfunction, functional status, monthly income, pain score, caregivers' SSRS score, and GSE score. Conclusions Most family caregivers of elderly patients with spinal tumours have a considerable caregiver burden. Interventions based on social support and self-efficacy can help reduce caregiver burden.

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Psychological well-being of Chinese Immigrant adult-child caregivers: how do filial expectation, self-rated filial performance, and filial discrepancy matter?

Background: Given the importance of ethnic culture in family caregiving and recent Chinese immigrant population growth, this study explored effects of multiple filial piety traits-filial expectation, self-rated filial performance, and filial discrepancy-on psychological well-being of Chinese immigrants who care for older parents (adult-child caregivers) in the United States. Methods: This study used cross-sectional data from 393 Chinese immigrant adult-child caregivers in the Greater Chicago area from the 2012-2014 Piety study. Multivariate negative binomial and linear regression analyses tested effects of filial expectation, self-rated filial performance, overall filial discrepancy, and discrepancies in six filial domains (respect, bringing happiness, care, greeting, obedience, and financial support) on psychological well-being indicators: depressive symptoms and stress. Results: Adult-child caregivers reported high filial expectation and self-rated performance, and expectation was higher than performance. High filial expectation and self-rated performance were significantly associated with better psychological well-being; Overall filial discrepancy and two emotional-support domain discrepancies (respect, greeting) were associated with poor psychological well-being. Conclusions: Findings suggest that filial expectation, self-rated filial performance, and filial discrepancy are important in shaping Chinese adult-child caregivers' psychological well-being. Researchers and practitioners should incorporate these aspects of filial piety in future research and intervention development for this population.

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Technology and Caregiving: Emerging Interventions and Directions for Research

An array of technology-based interventions has increasingly become available to support family caregivers, primarily focusing on health and well-being, social isolation, financial, and psychological support. More recently the emergence of new technologies such as mobile and cloud, robotics, connected sensors, virtual/augmented/mixed reality, voice, and the evermore ubiquitous tools supported by advanced data analytics, coupled with the integration of multiple technologies through platform solutions, have opened a new era of technology-enabled interventions that can empower and support family caregivers. This paper proposes a conceptual framework for identifying and addressing the challenges that may need to be overcome to effectively apply technology-enabled solutions for family caregivers. The paper identifies a number of challenges that either moderate or mediate the full use of technologies for the benefit of caregivers. The challenges include issues related to equity, inclusion, and access; ethical concerns related to privacy and security; political and regulatory factors affecting interoperability and lack of standards; inclusive/human-centric design and issues; and inherent economic and distribution channel difficulties. The paper concludes with a summary of research questions and issues that form a framework for global research priorities.

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Informal caregivers’ views on the quality of healthcare services provided to older patients aged 80 or more in the hospital and 30 days after discharge

BACKGROUND: In the European Union (EU), informal caregivers provide 60 per cent of all care. Informal caregiving ranges from assistance with daily activities and provision of direct care to helping care recipients to navigate within complex healthcare and social services systems. While recent caregiver surveys document the impact of informal caregivers, systematic reviews show that they have unmet needs. Because of the political desire to reduce the length of hospital stays, older patients are discharged from the hospital 'quicker and sicker' than before. The transition between different levels of the healthcare system and the period after hospital discharge is critical for elderly patients. Caregivers' perspectives on the quality of older patients' care journeys between levels of the healthcare system may provide valuable information for healthcare providers and policymakers. This study aims to explore older patient's informal caregivers' views on healthcare quality in the hospital and in the first 30days after hospitalisation. METHOD: We conducted semi-structured individual interviews with 12 participants to explore and describe informal caregivers' subjective experiences of providing care to older relatives. The interviews were then transcribed and analysed thematically. RESULTS: The analysis yielded the overarching theme 'Informal caregivers - a health service alliance - quality contributor', which was divided into four main themes: 'Fast in, fast out', 'Scant information', 'Disclaimer of responsibility' and 'A struggle to secure professional care'. The healthcare system seemed to pay little attention to ensuring mutual understandings between those involved in discharge, treatment and coordination. The participants experienced that the healthcare providers' main focus was on the patients' diseases, although the health services are supposed to view patients holistically. CONCLUSION: Based on the information given by informal caregivers, health services must take into account each person's needs and preferences. To deliver quality healthcare, better coordination between inter-professional care teams and the persons they serve is necessary. Health professionals must strengthen the involvement of caregivers in transitions between care and healthcare. Future work should evaluate targeted strategies for formal caregivers to cooperate, support and empower family members as informal caregivers. 

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The care capacity goals of family carers and the role of technology in achieving them

Background: As global populations age, governments have come to rely heavily on family carers (FCs) to care for older adults and reduce the demands made of formal health and social care systems. Under increasing pressure, sustainability of FC's unpaid care work has become a pressing issue. Using qualitative data, this paper explores FCs' care-related work goals, and describes how those goals do, or do not, link to technology. Methods: We employed a sequential mixed-method approach using focus groups followed by an online survey about FCs' goals. We held 10 focus groups and recruited 25 FCs through a mix of convenience and snowball sampling strategies. Carer organizations helped us recruit 599 FCs from across Canada to complete an online survey. Participants' responses to an open-ended question in the survey were included in our qualitative analysis. An inductive approach was employed using qualitative thematic content analysis methods to examine and interpret the resulting data. We used NVIVO 12 software for data analysis. Results: We identified two care quality improvement goals of FCs providing care to older adults: enhancing and safeguarding their caregiving capacity. To enhance their capacity to care, FCs sought: 1) foreknowledge about their care recipients' changing condition, and 2) improved navigation of existing support systems. To safeguard their own wellbeing, and so to preserve their capacity to care, FCs sought to develop coping strategies as well as opportunities for mentorship and socialization. Conclusions: We conclude that a paradigm shift is needed to reframe caregiving from a current deficit frame focused on failures and limitations (burden of care) towards a more empowering frame (sustainability and resiliency). The fact that FCs are seeking strategies to enhance and safeguard their capacities to provide care means they are approaching their unpaid care work from the perspective of resilience. Their goals and technology suggestions imply a shift from understanding care as a source of 'burden' towards a more 'resilient' and 'sustainable' model of caregiving. Our case study findings show that technology can assist in fostering this resiliency but that it may well be limited to the role of an intermediary that connects FCs to information, supports and peers. 

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The influence of the combination of visiting frequency of family caregivers and pre-admission frailty status on dependency after discharge among hospitalized older patients: a clinically-based prospective study

Purpose: This study aims to determine whether the combination of visiting frequency of the family caregiver and frailty status has an additive effect on the incidence of dependency among hospitalized older patients. Methods: We analyzed the prospective cohort data of hospitalized older patients (65 years and older) with internal medical problems. The main outcome showed patients’ dependency from admission to a month after discharge. We investigated the visiting frequency of family caregivers and the frailty status and categorized respondents into 4 groups: group 1, visiting frequency 3–7 times a week and non-frailty; group 2, visiting frequency 0–2 times a week and non-frailty; group 3, visiting frequency 3–7 times a week and frailty; or group 4, visiting frequency 0–2 times a week and frailty. We used the Cox proportional hazards regression to estimate the hazard ratios (HR) and confidence intervals (95% CI) of relationships between the combination of visiting frequency and frailty status, and dependency. Results: A total of 182 participants who completed the follow-up were analyzed. During the follow-up period, 45 participants (24.7%) showed some dependency. The hazards regression showed that the low visiting frequency group with presence of frailty had the most increased dependency, compared to other groups (adjusted HR 8.61 [95% CI 3.38–21.98]). Conclusions: The coexistence of low visiting frequency and the presence of frailty influenced dependency more strongly than each factor alone. These findings suggest that the combination of visiting frequency and frailty status is a useful predictor for future dependency. 

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Caregiver strain on informal caregivers when providing care for older patients undergoing major abdominal surgery: A longitudinal prospective cohort study

Background: Health-care systems nowadays rely on complementary patient care by informal caregivers. The need for, and burden on, informal caregivers will likely increase in the upcoming years. This study aimed to examine the burden on caregivers when providing care for elderly patients undergoing major abdominal surgery. Methods: A single-centre longitudinal cohort study was conducted between November 2015 and June 2018 in the Amphia hospital in Breda, the Netherlands. Patients aged 70+ undergoing elective surgery for colorectal carcinoma (CRC) or an abdominal aortic aneurysm (AAA) were included in this study. Informal caregiver burden was assessed and compared over time using the Caregiver Strain Index (CSI) at the outpatient clinic visit, at discharge, 2 weeks post-discharge and after 6 and 12 months. The effects of patient- and caregiver-related factors on the experienced caregiver strain were examined. Results: CSI scores of 248 caregivers were significantly increased at discharge (3.5 vs 2.6; p < 0.001) and 2 weeks post-discharge (3.3 vs 2.6; p < 0.001). After 12 months, scores dropped below baseline scores (1.8 vs 2.6; p = 0.012). The highest strain was observed 2 weeks post-discharge for AAA patients and at discharge for CRC patients. Older age, physical or cognitive impairment and burden of comorbidity were associated with an increased caregiver strain at baseline. Type of surgery was independently associated with the change in mean CSI scores over time; a bigger change in caregiver burden is observed after open surgery. Conclusion: In the early postoperative period, perceived caregiver strain was significantly increased. Psychological support for caregivers may be advisable, with timing of this support depending on diagnosis and patient-related factors. Trial registration: This manuscript was retrospectively registered on 05-04-2016 in the Netherlands Trial Register (NTR5932). http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=5932. 

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Development and validation of the scale for partnership in care—for family (SPIC-F)

This study aims to develop and validate the Scale for Partnership in Care between staff and families of older adult nursing home (NH) residents—for Family (SPIC-F). The components of partnership were identified on the basis of literature reviews and focus group interviews. The content validity of 41 preliminary items was verified by 10 experts, and a pilot study was conducted. The reliability and validity of the instrument was tested on 330 families of older adult NH residents. The final instrument comprised 20 items in three categories: professional caring and support, cooperative relationship and information sharing, and participation in care. Each item is rated on a four-point Likert scale, with total scores ranging from 20–80. The reliability of the instrument was 0.95, and test–retest ICC was 0.83. This instrument could be utilized to develop interventions to establish an efficient partnership and assess its outcomes. 

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The protective effects of informal care receipt against the progression of functional limitations among chinese older people

Objective: This study investigates the impacts of receiving informal care on the progression of functional limitations among older people aged 60 and older in China. Methods: The data come from three waves of the China Health and Retirement Longitudinal Survey, which collected health- and aging-related information on a nationally representative sample of Chinese older people from 2011 to 2015. Multilevel regression models were used to analyze the data. Results: The protective effect of receiving informal care is stronger for the first 2 years after the baseline survey and tends to fade away or be reversed 4 years later. The protective effect is stronger among older people receiving low-intensity informal care and is gradually weakened with an increase in care intensity. Discussion: Trajectories of function capabilities are deeply embedded in social relationships. In the context of rapid population aging and increasing demand for informal care, government support for caregivers is needed to sustain the protective effects of informal care. 

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Traditional Gender Roles and Effects of Dementia Caregiving within a South Asian Ethnic Group in England

Background: Despite the integral role that women play in the care of older adults in South Asian families, limited empirical data are available on the impact of migration from South Asia to England. The purpose of this research was to examine caring for a family member with dementia from a gender role perspective. Methods: Data were gathered in two phases: (1) focus groups and (2) semi-structured interviews. Focus groups were held with the general public, and semi-structured interviews were conducted with family carers. Data were audio-recorded and analysed using thematic analysis. The NVivo qualitative software was utilised to simplify the thematic analysis. Results: While traditionally family care for frail older adults has been mainly provided by women in South Asian families, the samples in this study revealed how women's attitudes towards caregiving are changing in British societies. Conclusion: There is a dearth of research about socioeconomic transformations in South Asian women's migration to Western countries that could contribute to deterring them from providing family care. More research is warranted to understand the ways in which migration shapes gender relations in South Asian families and its impact on care for the frail elderly. 

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Research Priorities in Family Caregiving: Process and Outcomes of a Conference on Family-Centered Care Across the Trajectory of Serious Illness

The number of older adults living with functional decline and serious illness is growing exponentially at a time when availability of both family and professional caregivers is strained. Achieving optimal outcomes for this vulnerable population involves advancing the knowledge needed to improve the quality of care delivered by families, health professionals, and community programs. Recent reports from National Institute of Health and the National Academy of Science, Engineering and Medicine have called for the identification of gaps in key areas of family caregiving intervention research. In March 2018, the Family Caregiving Institute at UC Davis convened an invitational meeting of over 50 thought leaders in family caregiving-representing service agencies, funding organizations, and academia-to participate in the Research Priorities in Caregiving Summit: Advancing Family-Centered Care across the Trajectory of Serious Illness. Using an iterative process, attendees identified the top 10 research priorities and created research priority statements that incorporated a definition of the priority topic, rationale for the priority; problem(s) to address; priority population(s); and example research topics. The research priority statements serve as a roadmap for research development that will address the most significant gaps in the caregiving field.

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Elder abuse in the COVID‐19 era

Reports of elder abuse range from financial scams to incidents of family violence, with public warnings issued accordingly from the Federal Trade Commission and the American Bar Association. The Centers for Disease Control and Prevention defines elder abuse as an intentional act or failure to act by a caregiver or another person in a relationship involving an expectation of trust that causes or creates a risk of harm to an older adult. Abuse of older adults can be physical, emotional, financial, neglect, or any combination of these. The World Health Organization defines ageism as “the stereotyping, prejudice, and discrimination against people on the basis of their age,” and a recent systematic review found ageism to be associated with numerous negative health consequences worldwide. Ageism is pervasive, harmful, and arguably the primary vice underlying elder abuse. See PDF.] ACKNOWLEDGMENTS Financial Disclosure This work was supported by the National Institute on Aging at the National Institutes of Health grants (R01AG055430 to S.D.H., R01AG060096 to L.M.) and the Administration for Community Living grant (90ABRC0001‐02‐00 to L.M.), as well as the Department of Family Medicine of the University of Southern California.

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Protecting the elderly through and beyond the Covid-19 lockdown

Extract: ...Add to this the knowledge that assaults and domestic murders surge by as much as 25% during a festive season - a time of increased financial strain and closer proximity of family members - and the present Covid-19 pandemic lockdown, the current environment for older people looks deeply concerning. Caregiver support interventions Stemming from the theoretical risk model of 'caregiver stress theory', caregiver support interventions seek to alleviate the stress and burden of caring for an older person by providing key services (including meal preparation, housekeeping help or day care, or broader caregiving help through educational, teaching coping strategies or support groups). There is help and support available for informal carers from Citizens Advice, and from local councils on a range of issues from making daily life easier to benefit claims * Have a conversation about practical arrangements for the future, e.g. 'Have you thought about future decision-making for health and financial matters?'; 'Do you feel confident managing your money?' Empowering older people to seek out knowledge to help plan their future can safeguard from abuse.

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Family Caregiving During the Hospitalization of an Older Relative

The purpose of the current study was to examine the role and activities of family caregivers for older relatives during hospitalization. The Family Care Actions Index was completed by 293 family caregivers of hospitalized older adults. Results indicated that the scope of caregiving activities extended beyond providing care to the patient and included working together with the health care team. Activities requiring interaction with providers, such as care coordination, planning, evaluation, and oversight, were frequently performed by family caregivers. Family caregivers are assuming a greater role during the hospital stay of older relatives. Partnering with family caregivers provides hospital staff an opportunity to improve care, outcomes, and satisfaction. 

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Relationship Between Caregiver Burden and Family Functioning in Family Caregivers of Older Adults With Heart Failure

Caregivers of individuals with heart failure are at high risk for diminished quality of life because of the energy involved in providing necessary care. Caring for someone with chronic heart failure can affect caregivers' physical, psychological, and social health, collectively referred to as the burden of care, and may also affect family functioning. The current cross-sectional study aimed to investigate the relationship between caregiver burden and family functioning in caregivers of older adults with heart failure in southeastern Iran using the Zarit Burden Inventory and the Family Assessment Device based on the McMaster Model of Family Functioning. The Pearson correlation coefficient, independent t test, and analysis of variance were used to determine relationships among variables. Results showed a significant correlation between burden of care and total score of family functioning. Therefore, it is necessary to take measures to reduce burden of care for caregivers through education and support programs and to improve their family functioning and quality of life. 

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Characteristics and Health Status of Informal Unpaid Caregivers - 44 States, District of Columbia, and Puerto Rico, 2015-2017

What is already known about this topic? Informal, unpaid caregivers provide important support to family members, friends, and the health care system and might compromise their own health to provide this support.

What is added by this report? During 2015–2017, approximately 20% of respondents to the Behavioral Risk Factors Surveillance System survey were classified as caregivers. Nearly 20% of caregivers reported fair or poor health, with wide interstate variation, ranging from 11.7% to 34.4%.

What are the implications for public health practice? Because caregiving is a public health issue of increasing importance as the U.S. population ages, the health status of caregivers warrants special attention.

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Allowing Visitors Back in the Nursing Home During the COVID-19 Crisis: A Dutch National Study Into First Experiences and Impact on Well-Being

Objectives: To prevent and control COVID-19 infections, nursing homes across the world have taken very restrictive measures, including a ban for visitors. These restrictive measures have an enormous impact on residents' well-being and pose dilemmas for staff, although primary data are lacking. A Dutch guideline was developed to cautiously open nursing homes for visitors during the COVID-19 pandemic. This study reports the first findings on how the guideline was applied in the local context; the compliance to local protocols; and the impact on well-being of residents, their family caregivers, and staff. Design: A mixed-methods cross-sectional study was conducted. Setting and Participants: In total, 26 nursing homes were permitted to enlarge their possibilities for allowing visitors in their facility. These nursing homes were proportionally representative of the Netherlands as they were selected by their local Area Health Authority for participation. At each nursing home, a contact person was selected for participation in the current study. Methods: A mixed-methods cross-sectional study was conducted, consisting of questionnaire, telephone interviews, analyses of documentation (ie, local visiting protocols), and a WhatsApp group. Results: Variation in local protocols was observed, for example, related to the use of personal protective equipment, location, and supervision of visits. In general, experiences were very positive. All nursing homes recognized the added value of real and personal contact between residents and their loved ones and indicated a positive impact on well-being. Compliance with local guidelines was sufficient to good. No new COVID-19 infections were reported during this time. Conclusions and Implications: These results indicate the value of family visitation in nursing homes and positive impact of visits. Based on these results, the Dutch government has decided to allow all nursing homes in the Netherlands to cautiously open their homes using the guidelines. More research is needed on impact and long-term compliance.

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Exploring a new model of end-of-life care for older people that operates in the space between the life world and the healthcare system: a qualitative case study

BACKGROUND: Innovative service models to facilitate end-of-life care for older people may be required to enable and bolster networks of care. The aim of this study was to understand how and why a new charitably funded service model of end-of-life care impacts upon the lives of older people. METHODS: A multiple exploratory qualitative case study research strategy. Cases were three sites providing a new end-oflife service model for older people. The services were provided in community settings, primarily providing support in peoples own homes. Study participants included the older people receiving the end-of-life care service, their informal carers, staff providing care within the service and other stakeholders. Data collection included individual interviews with older people and informal carers at two time points, focus group interviews with staff and local stakeholders, nonparticipant observation of meetings, and a final cross-case deliberative panel discussion workshop. Framework analysis facilitated analysis within and across cases. RESULTS: Twenty-three service users and five informal carers participated in individual interviews across the cases. Two focus groups were held with an additional twelve participants, and 19 people attended the deliberative panel workshop. Important elements contributing to the experience and impacts of the service included organisation, where services felt they were 'outsiders,' the focus of the services and their flexible approach; and the impacts particularly in enriching relationships and improving mental health. CONCLUSION: These end-of-life care service models operated in a space between the healthcare system and the person's life world. This meant there could be ambiguity around their services, where they occupied a liminal, but important, space. These services are potentially important to older people, but should not be overly constrained or they may lose the very flexibility that enables them to have impact. 

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Care and the shadow of the fourth age: how does home care get caught up in it and how does it stay away from it?

This article examines how care encounters at the elders' homes are forged, and how the way these encounters are forged avoids or evokes the social imaginary of the fourth age. Data were gathered in Portugal from elders receiving home care (16 cases), their care workers (eight cases) and family carers (six cases), through participant observation and informal conversations (conducted at the elders' homes), as well as focus groups. The collected data were analysed according to the procedures of Framework Analysis. This study found five forms of care encounters - marked by conflict, infantilisation, burden, harmony and indifference - the harmony form being the only one found to maintain the fourth age at a distance. It concludes that home care has a Janus-like nature in relation to the fourth age, and that the way home care encounters are forged depends on the conditions of the care settings and the actions of all participants in care encounters. It also concludes that it is difficult to maintain the social imaginary of the fourth age at a distance when the elders exhibit high levels of infirmity. Finally, it concludes that family carers play a crucial role in the way care encounters unfold. Implications for practice and policy include vocational training regarding the relational component of care, and information and educational programmes for family carers.

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Adaptation and Validation of the Capacity Scale for Informal Caregivers of Elderly Stroke Patients to be Used in Brazil

Background and Purpose: The Portuguese instrument for informal caregivers' skills providing care of aged people after a stroke (ECPICID-AVC) evaluates the capacities that informal caregivers must have for supporting aged stroke survivors. The purpose was to adapt and validate the ECPICID-AVC to be used in Brazil. Methods: A methodological study was conducted. Results: The terms with the lowest degree of comprehension were adapted. The factor analysis suggested the exclusion of three items and that the remaining be grouped into six domains. The factor loadings varied from 0.525 to 0.924. The internal intra-assessor consistency was satisfactory (ICC = 0.94, CI 95%). Total reliability was considered excellent (Cronbach's alpha = 0.914). Conclusions: The ECPICID-AVC is considered appropriate for using in Brazil.

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I’ll Be a Caregiver-Employee: Aging of the Workforce and Family-to-Work Conflicts

Background: The double role of caregiver-employee (CE) defines those workers who simultaneously serve as an informal, unpaid care provider for sick, disabled, or elderly relatives, and it is a situation that is on the increase in most western countries. Providing informal caregiving can lead to detrimental effects on emotional well-being and several physical and psychological diseases (e.g., caregiver-burden). CEs can suffer double discomfort (at work and at home), but, first of all, they can be exposed to a high level of home-to-work conflict (HWI). In this study, we analyzed the CE phenomenon in a typical Italian public company, where the mean age of workers is particularly high. Methods: An online questionnaire related to the perception of HWI, well-being, and discomfort at work (depression, emotional exhaustion, job engagement) in relation to the family load (none, parents with <12 children to care for, caregiver to other adults, or children and older adults to care for/old/children to care for employees) was answered by 1704 administrative workers. Results: More than 20% of our sample was included in the elder caregiver condition or in the double role or “sandwiched” condition with older adults and children to care for. The family load changed significantly between the different age groups: for workers aged between 55 and 64 years, the percentage was nearly 27%. CEs had higher levels of HWI and of personal and job discomfort and lower levels of engagement, when compared with non-CEs. Having “only” older adults to care for (the typical CE condition) was associated with having the most negative results. Conclusion: This study confirms and underlines the increasing number of CEs in western organizations and their higher levels of HWI, work disengagement, emotional exhaustion, and depression. As the general population and workforce experience increased “graying,” and many more workers become CEs out of necessity, stable caregiver-friendly workplace policies (CFWPs) should be developed. 

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Public policy for supporting employed family caregivers of the elderly: the Israeli case

The demographic processes that have  been avolving in recent years around the world and Israeli society in particular, associated with the rise in life expectancy and the aging of population, are rasing the depedency ratio  and increasing public policy  makers' interest in issues related to caring for the elderly and thier support. These  circumstances have a considerable effect on family member required to  assist  thier aging parents, as they raise the potential support ratio and have an even greater impact on employed family caregivers. This article examined the policy implemented in Israel for providing support and assistance to employed family caregivers assisting ageing parents. It shows that the current policy is relatively limited compared to that of other liberal countries and not compatible with caregivers’ demands and needs. The article calls for implementing an effective public policy for employed family caregivers and suggests ways of formulating such a policy. 

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Caregiving centenarians: Cross-national comparison in Caregiver-Burden between the United States and Japan

Background and Objectives: The personal distress associated with caring for a family member has been well documented; however, questions about the burden of caregiving for centenarians and cross-national differences in the caregiving context, remain unanswered. Research Design and Methods: This study includes reports by caregivers of 538 near-centenarians and centenarians in the U.S. and Japan: 234 from the Georgia Centenarian Study and 304 from the Tokyo Centenarian Study. Basic descriptive and multivariate regression analyses were conducted. Mean levels of caregiver burden and near-centenarian and centenarians’ characteristics (as predictors) for caregiver burden were compared between the U.S. and Japan. The near-centenarian and centenarians’ functional capacity and personality were assessed as predictors. Results: Differential predictive patterns in caregiver burden were found in the two groups. In the U.S., near-centenarian and centenarians’ agreeableness and conscientiousness were negatively associated with caregiver burden; whereas the near-centenarian and centenarians’ neuroticism and number of diseases were positively associated with caregiver burden. In Japan, the near-centenarian and centenarians’ activities of daily living, openness, and agreeableness were negatively associated with caregiving burden. Interaction effects between functional capacity and personality, on caregiver burden were observed only in the U.S. In the U.S., higher levels of agreeableness and openness significantly changed the level of caregiver burden associated with vision problems and a greater number of diseases. Discussion and Implications: Cross-national comparative predictors of caregiving burden between the two countries emphasized that caring for centenarians should be understood in the caregiving context, as well as the social context.

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Does the experience of caring for a severely disabled relative impact advance care planning? A qualitative study of caregivers of disabled patients

The aging of the Taiwanese population has become a major issue. Previous research has focused on the burden and stress faced by caregivers, but has not explored how the experience of these caregivers influences decisions of advance care planning (ACP). Semi-structured and in-depth interviews were conducted. Qualitative content analysis was used to identify important themes. Five themes and fourteen sub-themes were identified: (1) Past experiences: patient wishes, professional recommendations, and expectation about disease progress; (2) Impact of care on family members: positive affirmation, open-minded life, social isolation and health effects, and financial and life planning effects; (3) Attitude toward life: not forcing to stay, and not becoming a burden, (4) Expected proxy dilemmas: torment between doing or not, seeing the extension of suffering and toil, and remorse and self-blame; (5) Expectation of end of life (EOL) care: caregiver’s experience and EOL care decisions, and practicality of EOL decision making. After making multiple medical decisions for their disabled relatives, caregivers are able to calmly face their own medical decisions, and “not becoming a burden” is their primary consideration. It’s suggested that implementation of shared decision-making on medical care for patients with chronic disability will not only improve the quality of their medical care but also reduce the development of remorse and guilty feelings of caregivers after making medical decisions. 

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Being a caregiver as a determinant of quality of life and as a contributor to depressive symptoms

Background. Taking care of elderly, ill and disabled people, as well as rearing children alone, involve a number of medical, psychological, economic and social problems. Objectives. The aim of this study was to assess QoL and the severity of depressive symptoms in nonprofessional caregivers compared to non-caregivers. Material and methods. The study involved 460 (100%) participants, including 335 (72.8%) women and 125 (27.2%) men. The individuals were divided into two groups of the same size: a study group of 230 (50%) caregivers and a control group of 230 (50%) non-caregivers. 35.2% (n = 81) of the caregivers were taking care of an adult family member (parent, husband, wife, sister or brother), and 64.8% (n = 149) were mothers rearing children alone, of whom 91 women (19.8% of the whole study sample) were unmarried. The instruments employed in this study were the World Health Organization Quality of Life-Bref (WHOQoL-Bref) questionnaire, the Beck Depression Inventory and a questionnaire of our own devising. Results. The caregivers (p = 0.001) had lower general QoL. the non-caregivers (control group) scored 4 points more for general QoL, which was associated with a difference in the scores for the WHOQoL-Bref physical health domain. There were statistically significant differences in general QoL (p = 0.031) and in QoL scores in the physical health domain (p = 0.043) between the subgroups of caregivers. Conclusions. Estimating the extent of non-institutional care and concern for the quality of caregivers' lives will improve the physical and mental functioning of both caregivers and those under their care. Regardless of the nature of care, state of health and family relationships, caregivers should receive support from healthcare professionals, the local community, authorities and volunteers.

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Systematic review: Influence of self-help groups on family caregivers

Introduction: Since the incorporation of women into the world of work, together with the progressive ageing of the population and the increase of chronic diseases, there is an alteration in the role of the caregiver, due to the physical, work and family burden it bears, emotional conflicts and with other family members. Mutual aid can be an effective alternative to promoting the well-being of caregivers, as well as their families and dependents. Objective: To know the characteristics of self-help groups for family caregivers and their influence on caregivers, the dependent and family health. Methodology: Systematic review. The search strategy included the Pubmed, Scopus, Psycinfo, Eric, Cochrane plus and CSIC databases; selecting scientific articles in either Spanish, Catalan, English, Portuguese or French, for the last 10 years. Results: 12 articles related to the study topic were selected. All studies show that participation in these groups can improve the physical-psychological well-being, the health of caregivers and, at the same time, reinforce their sense of social support, although there is a lack of studies in our environment, with a size higher quality sample. Conclusions: Caregivers benefit from participating in self-help groups. Therefore, they should become a routine component of the family caregiver. 

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Decreasing Heart Failure Readmissions Among Older Patients With Cognitive Impairment by Engaging Caregivers

BACKGROUND: Cognitive impairment is common in older patients with heart failure (HF), leading to higher 30-day readmission rates than those without cognitive impairment. OBJECTIVES: The aim of this study was to determine whether increased readmissions in older adults with cognitive impairment are related to HF severity and whether readmissions can be modified by caregiver inclusion in nursing discharge education. METHODS: This study used prospective quality improvement program of cognitive testing and inclusion of caregivers in discharge education with chart review. Two hundred thirty-two patients older than 70 years admitted with HF were screened for cognitive impairment using the Mini-Cog; if score was less than 4, nurses were asked to include caregivers in education on 2 cardiovascular units with an enhanced discharge program. Individuals with ventricular assist device, transplant, or hospice were excluded. Measurements include Mini-Cog score, 30-day readmissions, readmission risk score, ejection fraction, brain natriuretic peptide, and medical comorbidities. RESULTS: Readmission Risk Scores for HF did not correlate with Mini-Cog scores, but admission brain natriuretic peptide levels were less abnormal in those with better Mini-Cog scores. Only for patients with cognitive impairment, involving caregivers in discharge teaching given by registered and advanced practice nurses was associated with decreased 30-day readmissions from 35% to 16% (P = .01). Readmission rates without/with cognitive impairment were 14.1% and 23.8%, respectively (P = .09). Abnormal Mini-Cog screen was associated with a significantly increased risk of 30-day readmission (odds ratio, 2.23; 95% confidence interval, 1.06-4.68; P = .03), whereas nurse documentation of education with family was associated with a significantly decreased risk of 30-day readmission (odds ratio, 0.46; 95% confidence interval, 0.24-0.90; P = .02). CONCLUSIONS: Involving caregivers in discharge education significantly reduced 30-day readmission rates for patients with HF and cognitive impairment. The Readmission Risk Score was similar between patients older than 70 years with and without cognitive impairment. We have hypothesis-generating evidence that identification of cognitive impairment and targeted caregiver engagement by nurses may be critical in the reduction of readmission rates for older patients with HF.

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Caring safely at home

This video-based resource is designed to help people look after someone safely at home.

This resource will help you care for people in any situation, although this resource may be particularly useful if you are supporting someone during the COVID-19 crisis.

Each section has a set of videos designed to give you and the person you care for practical and relevant information to support you day to day.

What will the videos cover?

  • how to help manage certain conditions
  • providing everyday support for any person you’re caring for.

There is no set order you need to go through these topics, and some may not apply to your specific situation. Learn at your own pace and choose whichever is relevant to you.

Original source (some source materials require subscription or permission to access)

Associations between care network types and psychological well-being among Dutch older adults

This study examines the mechanisms underlying the association between care network types and psychological well-being. Care recipients in the 2015/16 wave of the Longitudinal Aging Study Amsterdam (<i>N</i> = 607) reported on the structural (size and composition) and functional features of care network types (satisfaction, feeling in control of care and care attitudes). Those in a mixed care network reported the highest depressive symptoms, while those in a spousal care network and a privately paid care network reported the lowest. The importance of being in control of care interacts with care network type on well-being. The results corroborate that both informal and formal caregivers need to help older persons to remain in control of care.

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Caring for older people: relational narratives of attentiveness, commitment and acceptance

Informal care evolves from an existing relationship with the care recipient. This study aims to understand the relational nature of such care. Six participants caring for a spouse or parent chose their own methods of data collection, including keeping a journal, telephone interviews or face-to-face interviews. Participants drew on personal narratives to reveal different identities, which included a guardian, a partner, a coper, and a campaigner on behalf of the person receiving care. These findings demonstrate how providing good care is part of each carer’s relational identity. Acknowledging the relational nature of care will enable better support for carers.

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Voice‐Controlled Intelligent Personal Assistants to Support Aging in Place

BACKGROUND/OBJECTIVES: Many older adults wish to age in place, and voice‐controlled intelligent personal assistants (VIPAs; eg, Amazon Echo and Google Home) potentially could support unmet home needs. No prior studies have researched the real‐world use of VIPAs among older adults. We sought to explore how older adults and caregivers utilize VIPAs. DESIGN/MEASUREMENT: Retrospective review of all verified purchase reviews of the Amazon Echo posted on Amazon.com between January 2015 and January 2018, with filtering for health‐related older adult key words. Open‐ended reviews were qualitatively analyzed to identify relevant themes. RESULTS: On retrieval, there were 73 549 reviews; and with subsequent key word filtering, 125 total reviews were subsequently analyzed. Five major themes were identified: (1) entertainment ("For two very senior citizens...we have really had fun with Echo. She tells us jokes, answers questions, plays music.); (2) companionship ("A senior living alone...I now have Alex to talk to."); (3) home control; (4) reminders ("I needed something that would provide me with information I couldn't remember well, such as the date, day, or my schedule...I highly recommend for anyone with memory challenges"); and (5) emergency communication. Several felt it reduced burdening caregivers. "...You also feel guilt from fear of overburdening your caregivers. Alexa has alleviated much of this." Specifically, caregivers found that: "By making playlists of songs from her youth whoever is providing care, family or professional caregiver, can simply request the right song for the moment in order to sooth, redirect, or distract Mom." Alternatively, negative reviewers felt the VIPA misunderstood them or could not adequately respond to specific health questions. CONCLUSION: VIPAs are a low‐cost artificial intelligence that can support older adults in the home and potentially reduce caregiver burden. This study is the first to explore VIPA use among older adults, and further studies are needed to examine the direct benefits of VIPAs in supporting aging in place.

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Vietnamese Adult-Child and Spousal Caregivers of Older Adults in Houston, Texas: Results from the Vietnamese Aging and Care Survey (VACS)

Vietnamese are the largest Asian ethnic group in Houston, Texas; however, research on this population is scarce. To address this dearth of knowledge, we developed the Vietnamese Aging and Care Survey. The objective of the study was to explore the sociodemographic and health characteristics of Vietnamese adults aged 65 years and older (n = 132) and their family caregivers (n = 64). Adult-child caregivers (n = 41) were aged between 21 and 65 years old. The majority were married, working, female, and in good to excellent health. Spousal caregivers (n = 23) were between 57 and 82 years old, retired, female, and in fair to good health. Adult children received more caregiving-related help from others compared to spousal caregivers; however, they felt more caregiver burden, had more perceived stress, and were in challenging relationships with care recipients. Differences in life stages of adult-child versus spousal caregivers may contribute to these results. Implications are discussed.

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Using Patient- and Family-Reported Outcome and Experience Measures Across Transitions of Care for Frail Older Adults Living at Home: A Meta-Narrative Synthesis

Background and Objectives: Our aim was to create a "storyline" that provides empirical explanation of stakeholders' perspectives underlying the use of patient- and family-reported outcome and experience measures to inform continuity across transitions in care for frail older adults and their family caregivers living at home.; Research Design and Methods: We conducted a meta-narrative synthesis to explore stakeholder perspectives pertaining to use of patient-reported outcome and experience measures (PROMs and PREMs) across micro (patients, family caregivers, and healthcare providers), meso (organizational managers/executives/programs), and macro (decision-/policy-makers) levels in healthcare. Systematic searches identified 9,942 citations of which 40 were included based on full-text screening.; Results: PROMs and PREMS (54 PROMs; 4 PREMs; 1 with PROM and PREM elements; 6 unspecified PROMs) were rarely used to inform continuity across transitions of care and were typically used independently, rarely together (n = 3). Two overarching traditions motivated stakeholders' use. The first significant motivation by diverse stakeholders to use PROMs and PREMs was the desire to restore/support independence and care at home, predominantly at a micro-level. The second motivation to using PROMs and PREMs was to evaluate health services, including cost-effectiveness of programs and hospital discharge (planning); this focus was rarely at a macro-level and more often split between micro- and meso-levels of healthcare.; Discussion and Implications: The motivations underlying stakeholders' use of these tools were distinct, yet synergistic between the goals of person/family-centered care and healthcare system-level goals aimed at efficient use of health services. There is a missed opportunity here for PROMs and PREMs to be used together to inform continuity across transitions of care.

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Using a Nursing Salon to Identify and Develop an Initiative for Family Caregivers of Older Adults

The purpose of the Aging Well Nursing-Interprofessional Salon was to explore current local community healthcare issues for older adults and to develop innovative strategies that support and enhance their health. An initiative emerged from the salon that focuses on identifying caregivers to ensure their awareness of available support resources. We are in the process of developing a pilot plan that includes collaboration of PhD and doctorate of nursing practice students, nursing faculty, and community agencies that support older adults.

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Thai family caregivers' experiences helping dependent elders during medical emergencies: a qualitative study

Aim: To describe the experience of family caregivers of dependent elders during medical emergencies in rural settings in Thailand.; Methods: This was a descriptive qualitative research using in-depth interviews of 15 participants. Content analysis was applied to transcribed interviews, including data reduction as well as identification of key words, phrases, and themes.; Results: The findings described the experience of caregivers of dependent older persons who faced emergency illness. Most of the family caregivers described their roles in unusual situations as practising assessment first and doing something that may relieve the symptoms experienced by the older persons before initiating and calling for help from relatives, neighbors, and, finally, the emergency medical services. The caregivers four main barriers to them feeling competent: (1) lack of home monitoring devices, (2) inexperienced caregivers in assessing warning signs to report during emergency care, (3) lack of information and understanding of patient rights in emergency health services, and (4) delayed arrival of emergency medical services.; Conclusions: There are barriers to the development of competency in caregiving skills, especially in assessing and recognizing warning signs and initiating first aid accurately before the arrival of the emergency health care team.

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Social support and depressive symptoms among family caregivers of older people with disabilities in four provinces of urban China: the mediating role of caregiver burden

Background: To examine the relationship between social support and depressive symptoms of Chinese family caregivers of older people with disabilities, and to evaluate the role of caregiver burden as a potential mediator of that relationship.; Methods: A survey questionnaire was completed face-to-face by 567 primary family caregivers of older people with disabilities in four provinces in China. Covariates that may affect depressive symptoms, such as the characteristics of disabled people (socio-economic factors, functional and cognitive capacity) and caregivers (caregiver duration and self-rated health of caregivers) were collected. Social support was measured by the Multidimensional Scale of Perceived Social Support (MSPSS); depressive symptoms were assessed by the shortened 10 item version of Center for Epidemiological Studies Depression scale (CES-D); and the caregiver burden was assessed by the Zarit Burden Interview (ZBI).; Results: The prevalence of depressive symptoms among caregivers was 37.7%. Higher levels of social support was negatively associated with lower depressive symptoms. This relationship was partially mediated by the caregiver burden, where higher levels of the caregiver burden were negatively associated with depressive symptoms. Furthermore, caregivers who were women, spent extended time in caregiving and were in poor health, reported significantly higher depressive symptoms.; Conclusions: Our results indicated that social support was negatively associated with depressive symptoms in family caregivers and in the caregiver burden. The caregiver burden partially mediated the social support-depressive symptoms association. Interventions for family caregivers should include increasing social support, health monitoring and structured interventions to reduce the caregiver burden and attenuate family caregivers' depressive symptoms.

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Regrets of family caregivers in Israel about the end of life of deceased relatives

Objective: We aimed to clarify the content of different types of regrets or lack of regret, and the frequency of feeling regret among family caregivers who assisted their relatives during their end of life stage. Method: Seventy primary informal caregivers in Israel were interviewed (17 spouses, 52 children, and 1 cousin) concerning their regret about the end of life of their deceased relative, including a general question about regret and questions about regret concerning life-sustaining treatments. After calculating the frequency of regrets and lack of regret, we conducted a qualitative analysis, using a thematic approach to identify themes and interpret data. Results: A majority of caregivers (63%) expressed regret and about 20% expressed ambivalence involving both regret and denial of regret. Regrets pertained to care given, suffering experienced, and the caregiver's behavior towards, and relationship with the deceased, including missing opportunities to express love and caring toward relatives. Caregivers viewed almost 30% of 75 administered life-sustaining procedures as misguided. Most regrets involved inaction, such as not communicating sufficiently, or not fighting for better care. Conclusion: This article provides a comprehensive description of EoL regrets, and helps clarify the complexity of regrets, lack of regrets, and ambivalence concerning regrets, though the study is limited to one country. Analysis suggests the need for public education concerning the EoL process, and for changes within the health care system to improve communication, to improve understanding of the needs of the terminally ill, and to provide more instruction to family caregivers to help them understand EoL.

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Preliminary Evidence for the Validity of the Family Caregiver Identity Scale

The purpose of this study was to develop and evaluate the Family Caregiver Identity Scale (FCIS), an instrument designed to measure the extent to which an individual identifies with the family caregiver role. The process of instrument development outlined in the Standards for Educational and Psychological Testing was combined with Dillman's four stages of pretesting. This was a multistage, iterative process, including several revisions based on feedback from experts, interviews, and pilot testing. Factor analyses were performed to test the hypothesized model of caregiver identity. A version of the FCIS consisting of 18 items was created and demonstrated initial evidence of validity. The FCIS will enable gerontological professionals to assess caregiver identity. The absence of caregiver identity is a factor in caregivers not accessing support services. This study contributes to the growing body of research connecting caregiver identity and support service utilization by caregivers.

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Predictors of Unmet Need among Informal Caregivers

Objectives: This study investigates the relationship of caregiver demographics, caregiving intensity, caregiver support use, and aspects of the caregiving situation to a self-reported measure of unmet need among U.S. informal caregivers of older adults living at home with various conditions.; Methods: Response data from 1,558 caregiver participants interviewed by telephone during the December 2016 baseline period of the Outcome Evaluation of the National Family Caregiver Support Program were used. Caregivers who responded "Definitely No" to the question "Are you receiving all the help you need?" were classified as reporting unmet need. Logistic regression was used to find significant factors associated with unmet need among the full sample and among caregivers tiered by three levels of burden.; Results: Unmet need was reported by 22% of the caregivers. In a fully adjusted model, unmet need was predicted by higher levels of caregiving intensity, non-White race of the caregiver, and the caregiver not feeling appreciated by their care recipient. Other predictors associated with unmet need were no use of caregiver educational services, fewer respite hours, not living in a rural area, and caregiver having an education past high school.; Discussion: Caregivers who do not feel appreciated by their care recipient and non-White caregivers should be identified as potential targets for intervention to address unmet need, especially if they are also reporting higher levels of caregiver burden. Understanding the factors associated with self-reported unmet need can assist caregiver support programs in measuring and addressing the needs of informal caregivers to support their continued caregiving.

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Perceived stress and social support influence anxiety symptoms of Chinese family caregivers of community-dwelling older adults: a cross-sectional study

Aim: Chinese family members always take care of older adults because of obligations stemming from the culture of filial piety and the paucity of a long-term care system. These caregivers usually perceive high levels of stress that could compromise their psychological health and consequently result in anxiety impairments. This study aimed to assess the anxiety symptoms of Chinese family caregivers of older adults, explore factors associated with these symptoms, and provide theoretical evidence on improving their mental health.; Methods: A questionnaire survey was conducted face-to-face with caregivers of community-dwelling older adults. The survey asked about the demographic characteristics of the caregivers and older adults, objective caregiving loads, and social support and included the Zung Self-Rating Anxiety Scale and the Perceived Stress Scale.; Results: Anxiety symptoms were present in 43.1% of caregivers. The R2 changes indicated that the incremental variance explained by each block of variables was 9.8%, 5.0%, 0.7%, 17.6%, and 2.1% for demographic characteristics of caregivers, demographic characteristics of older adults, objective caregiving loads, perceived stress, and social support, respectively. Perceived stress was the strongest predictor of anxiety symptoms, and social support was positively associated with anxiety symptoms. Factors associated with caregivers' anxiety symptoms were having a chronic disease and living with older adults, as well as older adults' weight, hours of sleep, and education level.; Conclusion: Chinese family caregivers of older adults experienced higher levels of anxiety symptoms. Perceived stress could aggravate these symptoms, but social support might assist in alleviating anxiety symptoms from the stress of caregiving.

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Managing Urinary Incontinence

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home.The articles in this new installment of the series provide simple and useful instructions that nurses should reinforce with family caregivers. This article is the second of two that provide an update on urinary incontinence and its management in older adults. It includes an informational tear sheet-Information for Family Caregivers-that contains links to the instructional videos. To use this series, nurses should read the articles first, so they understand how best to help family caregivers, and then encourage caregivers to watch the videos and ask questions. For additional information, see Resources for Nurses.

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The "Last Child": Lone Family Caregivers in St. Croix, US Virgin Islands

I investigate local explanations for a common family configuration of care for older relatives on the island of St. Croix, U.S. Virgin Islands: the "lone family caregiver." Through the examination of a paradigm case emerging from these explanations, I argue that local logics can divest some children of obligations to care for their older parents. I suggest that this case is an important addition to recent discussions within the anthropology of care that emphasize how families practice "care across distance," as it offers an alternative example of how families manage care in the context of migration. 

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Innovating Long-Term Care Provision in Mediterranean Welfare States: A Comparison Between Italy and Israel

Social innovations in long-term care (LTC) may be useful in more effective responses to the challenges of population aging for Western societies. One of the most investigated aspects in this regard is the role of family/informal care and strategies to improve its integration into the formal care system, yielding a more holistic care approach that may enhance opportunities for aging in place. This article reports the findings of a comparative research focusing on the Italian and Israeli LTC systems as representative of the Mediterranean "family-based" care model. To analyze the innovative solutions that have been adopted or are needed to improve LTC provision in these two contexts, focus groups and expert interviews have been carried out in both countries to identify the most relevant challenges and responses to them and to highlight promising policies and strategies to be adopted or up-scaled in the future. These include multidisciplinary case and care management, a stronger connection between prevention and LTC provision, and more systematic recognition of the role and limits of informal caregivers' contributions.

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Informal Caregiver Burden and Benefits and Older Adult Mortality: A Survival Analysis

Objective: Informal caregivers are crucial to maintaining older adults' health, but few studies examine how caregiving receipt is associated with older person longevity. In a nationally representative sample, we prospectively explore whether and how having an informal caregiver is associated with older adult overall mortality, and how caregivers' burden and benefits perceptions relate to care recipient mortality.; Methods: We match six National Health and Aging Trends Study waves (2011-2016) with 2011 National Study of Caregiving data, conducting survival analysis on 7,369 older adults and 1,327 older adult-informal caregiver dyads.; Results: Having an informal caregiver is associated with 36% (p<0.001) higher mortality risk over 6-year follow-up, adjusting for demographic, economic and health factors. Older adults whose caregivers perceive only burden have 38% higher (p<0.05) mortality risk than those with caregivers reporting neither burden nor benefits. This risk is reduced from 38% higher to 5% higher (p<0.001) for older adults with caregivers reporting benefits alongside burden, compared to those with caregivers reporting neither perception.; Discussion: Having a caregiver may signal impending decline beyond known mortality factors. However, interventions to increase caregivers' benefit perceptions and reduce their burden may decrease mortality risk for older adults with declining health and functional ability.

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How do clients and (In)formal caregivers experience quality of home care? A qualitative approach

Aim: To explore and understand the views of clients and formal and informal caregivers about the experienced quality of home care for older people. Design: A descriptive qualitative study was conducted using individual interviews. Methods: Six home care clients, four formal and six informal caregivers were recruited from two Dutch home care organizations. Individual, semi‐structured interviews took place between April ‐ November 2018. The INDividually EXperienced QUAlity of Long‐term care framework was used to guide data collection and content analyses. Results: The analyses revealed several important attributes contributing to experienced quality of home care such as a preferred small number of caregivers, perceived sufficient time for care provision and a caring atmosphere facilitating open communication and humour. Participants indicated that care routines fitting with the care receiver's former way of living were important. A more 'close' personal care relationship related to trust, openness and empathy was preferred over a more 'detached' professional care relationship. Conclusion: This study identified a wide range of attributes related to experienced quality of care from the perspectives of clients and formal and informal caregivers in home care. Impact: Care providers are being challenged to structurally assess individual experienced quality of home care. This study underlines the importance of incorporating care preferences and experiences throughout the care process from a relationship‐centred care approach. Relevant care measures and outcomes should be determined to gain insight and further improve individual care provision.

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Female family carers' experiences of violent, abusive or harmful behaviour by the older person for whom they care: a case of epistemic injustice?

Family carers affected by violent, abusive or harmful behaviour by the older person for whom they care face social and epistemic challenges in developing and sharing knowledge about their experiences. These difficulties have contributed to a situation in which there is a paucity of evidence and public discourse about how we understand violence and harm instigated by people who have care needs or are 'vulnerable'. This paper reports the findings of a qualitative study that involved 12 in‐depth interviews with female carers affected by violence, abuse or harm. The study was informed theoretically by Miranda Fricker's concept of epistemic injustice which was used as a framework for analysis. There were two principal findings: (1) Carers were sensitive to anticipatory stigma and loss of moral autonomy. As a result, they self‐censured what they shared and, at times, were met with subtle but powerful processes of silencing. (2) Carers had limited linguistic and conceptual resources to explain the emotional and social aspects of the harm they experienced, exacerbated by implicit social norms about the 'private' and gendered nature of familial care. To conclude, we discuss the implications of these findings for sociological research and health and social care practice.

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Feasibility of Tele-Prompt: A tablet-based prompted voiding intervention to support informal caregivers of older adults with urinary incontinence

Urinary incontinence (UI) is a highly prevalent condition, burdening older adults and their informal caregivers. This study explored the development and feasibility of a 6-week evidence-based, educational/skill building program delivered via tablet-personal computer aimed at developing informal caregiver UI knowledge; and enhancing informal caregiver skill set in prompted voiding and toileting strategies. Caregivers also received individualized weekly coaching sessions from a nurse expert. Feasibility and preliminary efficacy were tested in three caregiver/care-recipient dyads. Recruitment of eligible participants through community-based resources was a challenge to feasibility. Most caregivers found the technology acceptable, but adherence to prompted voiding was inconsistent. All caregivers rated the intervention highly, reported improvements in their care-recipient's urine leakage, found access to a UI expert beneficial, and would recommend it to a friend. The results suggest that the tablet-facilitated intervention was feasible and acceptable to informal caregivers and showed promise for improving both caregiver and care recipient outcomes.

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Family Caregiving for Older Adults

Family members are the primary source of support for older adults with chronic illness and disability. Thousands of published empirical studies and dozens of reviews have documented the psychological and physical health effects of caregiving, identified caregivers at risk for adverse outcomes, and evaluated a wide range of intervention strategies to support caregivers. Caregiving as chronic stress exposure is the conceptual driver for much of this research. We review and synthesize the literature on the impact of caregiving and intervention strategies for supporting caregivers. The impact of caregiving is highly variable, driven largely by the intensity of care provided and the suffering of the care recipient. The intervention literature is littered with many failures and some successes. Successful interventions address both the pragmatics of care and the emotional toll of caregiving. We conclude with both research and policy recommendations that address a national agenda for caregiving.

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Family Caregivers' Experiences With Health Care Workers in the Care of Older Adults With Activity Limitations

Importance: Family and unpaid caregivers often play an active role in managing the care of older adults with activity limitations.; Objective: To examine caregivers' experiences with older adults' health care workers.; Design, Setting, and Participants: This survey study constitutes a secondary analysis of a sample of 1916 family and unpaid caregivers to 1203 community-living older adults with activity limitations who participated in the 2017 National Health and Aging Trends Study. Data analysis was performed January to August 2019.; Exposures: Caregiver sociodemographic characteristics, caregiving intensity, and frequency speaking with or emailing older adults' health care workers.; Main Outcomes and Measures: Caregiver-reported experiences when interacting with older adults' health care workers in the prior year, including being listened to, being asked about understanding of treatments, and being asked about help needed in managing older adults' care.; Results: Caregivers (mean [SE] age, 59.4 [0.5] years; 63.7% women) assisting community-living older adults with activity limitations reported that they never (56.3%), sometimes or rarely (33.0%), or often (10.7%) spoke with or emailed older adults' health care workers in the prior year. Most caregivers who interacted with older adults' health care workers reported being always (70.6%) or usually (18.2%) listened to and always (54.4%) or usually (17.7%) being asked about their understanding of older adults' treatments. Fewer caregivers reported being always (21.3%) or usually (6.9%) asked whether they needed help managing older adults' care, and nearly one-half (45.0%) were never asked. Caregivers who interacted with older adults' health care workers often (vs sometimes or rarely) were more likely to report being always or usually listened to (94.8% vs 86.9%; P = .004), being asked about understanding treatments (80.1% vs 69.5%; P = .02), and being asked about needing help (40.8% vs 24.1%; P < .001). No other exposures were consistently associated with caregiver experiences. Measures of caregiving intensity, including caring for an older adult with dementia, were not associated with being listened to or asked about understanding, but were associated with being asked about needed help. Although caregivers of persons with dementia were more likely than caregivers of persons without dementia to report always being asked about needed help (26.9% vs 19.0%), a high percentage in both groups were never asked (41.2% vs 46.5%) (P = .007).; Conclusions and Relevance: These findings reinforce the need for strategies to better support family and unpaid caregivers, who are the main source of assistance to older adults with physical and/or cognitive limitations.

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Experience of family caregivers of hospitalized older people in Kolkata, India

In India, family caregivers (FCs) play a major role in providing care to their older kin during hospitalization. This article explores the challenges encountered by them while providing care in a public hospital. It draws upon empirical insights obtained through interviews with 54 FCs and field observations. The findings show that the hospital was not congenial for FCs and exposes the factors impeding their caregiving role. FC experience was found to be highly complex and fraught with multiple practical challenges during admission, in-hospital treatment, and at discharge. All these had repercussions on various aspects of their own life and well-being like poor health outcomes, financial stress, and social isolation. The article concludes that the needs, preferences, and challenges of the FCs need to be considered to make hospitals conducive for FCs of older people.

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The Effect of National Family Caregiver Support Program Services on Caregiver Burden

Extant evidence on the effectiveness of caregiver programs in alleviating caregiver burden is mixed, underscoring the need for further investigations. This study evaluated the effect of the National Family Caregiver Support Program (NFCSP) educational services and respite care on caregiver burden. We used survey data from caregivers assigned to program (n = 491) or comparison (n = 417) group based on their reported use of NFCSP services. Adjusted difference-in-differences (DiD) analysis found an increase in mean burden scores for both groups from baseline to 6 or 12 months. Among program caregivers receiving ≥4 hr of NFCSP respite care per week (n = 307) and matched comparisons (n = 370), burden scores decreased slightly for program caregivers (-0.095 points), but increased for comparison caregivers (+0.145 points). The DiD (0.239 points) was not statistically significant. More research is needed to determine the minimum amount of respite care needed to positively impact caregiver burden.

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Coping with cognitive impairment and family caregiving: Introduction to the special section

Consistent with the long history within Psychology and Aging of publishing high impact articles on family caregiving, the current Special Section includes 5 articles that provide important advances, in knowledge and in methodological sophistication, to the study of cognitive difficulty, impairment and family caregiving. One study used daily diary data over 14 days to conduct microlongitudinal analyses of the prospective impact of everyday memory failures on negative affect and marital interactions in older couples. Also relying on dyadic data, 2 other articles addressed the impact of caregiving on family members, including a study of the effects of transitioning to family caregiving over time on well-being in older husbands and wives, and a comparison of primary and secondary caregivers. Together, these articles represent important methodological advances in terms of the use of longitudinal data to study the effects of transition to cognitive impairment and spousal caregiving within the couple, and the inclusion of multiple caregivers to illustrate the impacts of caregiving in the broader family. In addition, two articles examined issues in clinical intervention for caregivers. Both articles offer new insights about the effectiveness of caregiver interventions, with the former focusing on the relative merits of offering intervention components in a flexible way over the manualized approach, and the latter a comprehensive systematic review and meta-analysis to tease out the relative utility of different intervention characteristics and approaches, with a new lens to look at psychoeducational programs. The implications of these articles for family caregiving and further research advances are discussed. 

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The Changing Status of Israeli Arab Women as Reflected in Their Role as Main Caregivers

The study evaluated how changes in the status of women in the Israeli Arab sector are perceived in light of the role of women as main caregivers of older adults. Interviews with 25 older adults and 27 family members were conducted. Qualitative analysis consisted of constant comparisons and contrasts of relevant themes. Two main themes emerged from the interviews. The first theme was the expected and actual role of women. The immediate response of most interviewees was the expectation that women are responsible for housework in their own home and in that of their aging parents. The second theme was the changes in the woman’s status in the Arab society. Most respondents noted that women today are very busy, and they sometimes work outside the home. In other words, the themes reflect the conflict between tradition and the rules that were followed in the past, and the changes that have appeared in recent years.

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Caring Near and Far by Connecting Community-Based Clients and Family Member/Friend Caregivers Using Passive Remote Monitoring: Protocol for a Pragmatic Randomized Controlled Trial

Background: Significant chronic disease challenges exist among older adults. However, most older adults want to remain at home even if their health conditions challenge their ability to live independently. Yet publicly funded home care resources are scarce, private home care is expensive, and family/friend caregivers have limited capacity. Many older adults with chronic illness would require institutional care without the support from family member/friend caregivers. This role raises the risk of physical health problems, stress, burnout, and depression. Passive remote monitoring (RM), the use of sensors that do not require any action by the individual for the system to work, may increase the older adult's ability to live independently while also providing support and peace of mind to both the client and the family member/friend caregiver.; Objective: This paper presents the protocol of a study conducted in two provinces in Canada to investigate the impact of RM along with usual home care (the intervention) versus usual home care alone (control) on older adults with complex care. The primary outcome for this study is the occurrence of and time to events such as trips to emergency, short-term admission to the hospital, terminal admission to the hospital awaiting admission to long-term care, and direct admission to long-term care. The secondary outcomes for this study are (1) health care costs, (2) client functional status and quality of life in the home, (3) family/friend caregiver stress, and (4) family/friend caregiver functional health status.; Methods: The design for this study is an unblinded pragmatic randomized controlled trial (PRCT) with two parallel arms in two geographic strata (Ontario and Nova Scotia). Quantitative and qualitative methodologies will be used to address the study objectives. This PRCT is conceptually informed by the principles of client-centered care and viewing the family as the client and aims at providing supported self-management.; Results: This study is supported by the Canadian Institutes for Health Research. A primary completion date is anticipated in fall 2022.; Conclusions: Findings from this real-world rigorous randomized trial will support Canadian decision-makers, providers, and clients and their caregivers in assessing the health, well-being, and economic benefits and the social and technological challenges of integrating RM technologies to support older adults to stay in their home, including evaluating the impact on the burden of care experienced by family/friend caregivers. With an aging population, this technology may reduce institutionalization and promote safe and independent living for the elderly as long as possible.; Trial Registration: International Standard Randomised Controlled Trial Number (ISRCTN) 79884651; http://www.isrctn.com/ISRCTN79884651.; International Registered Report Identifier (irrid): DERR1-10.2196/15027.

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The care-wage penalty: the association between family care and wages

Background: Against the background of demographic aging, the need for professional and private care will increase in the future. To contain costs many welfare states rely on the family as care provider and, in addition, people in need of care often prefer being cared for at home. Thus, the number of people who provide care privately and without pay in the home environment (referred to as family care in this article) is likely to increase. So far, however, research on the impact of family care on the labor market situation of caregivers in general and their wages in particular remains scarce. Objective: This article examines whether and if so to what extent, family care affects the wages of women and men. Material and methods: Using data from the German Socio-Economic Panel (2001–2017), fixed effects regressions were estimated separately for women and men, while accounting for important confounders. Results: Both women (2.4%) and men (3%) suffer wage losses as a result of family care activities. Conclusion: The results indicate that care-related wage losses, net of relevant controls, exist.

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The Care of "Small Things": Aging and Dignity in Rwanda

In Rwanda, disruptions to family and social life as a result of the 1994 genocide, and the economic transformations in its aftermath, have complicated the fabric of elder care across the country. In this article, I focus on how elderly Rwandans are reconfiguring their care networks - many of which were destroyed during the genocide - by acting as caregivers and care receivers for each other on a daily basis. Although emotionally and physically taxing, elderly Rwandans emphasize that the "small things" embedded in the giving and receiving of care are intricately connected to how personal and collective dignity is cultivated. 

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Can Family Caregivers Provide Life Review to Reduce Depression in Older Adults With Dementia?

Life review (LR) therapy has received considerable support as an effective treatment for depression among older adults. Researchers believe that providing LR does not require extensive training and can be done by family members who are not psychiatric professionals. If so, then training family caregivers to provide LR is a potential strategy for alleviating the shortage of resources for treating depression among the growing population of older adults experiencing depression. A pilot study that explored the feasibility of that strategy had mixed results. Seventeen (89%) of 19 caregiver–care recipient dyads completed the current study, and caregivers provided the LR with self-reported fidelity. However, there was lack of statistically significant improvement in this convenience sample. Implications are provided for future assessments of this strategy with a larger study of caregiver and care recipient dyads. 

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Beware of Discharge: A Case Exploring the Ethics of Societal Expectations Placed on Family at Hospital Discharge

As the population ages and medical therapies advance, more individuals are living in the community with complex health conditions. These individuals, as well as their clinicians, often assume their family members and friends will be capable of, and willing to, provide the caregiving work necessary to continue living at home. There is an ethical problem in this assumption that unpaid community care will be provided by family or friends. Using the Hunt and Ells Patient-Centered Care Ethics Analysis Model for Rehabilitation (2013), this article explores the ethical considerations involved in the hospital discharge planning of a fictional case involving a middle-aged, male stroke patient who is in a strained marriage. We discuss the ethical merits and concerns of the various discharge options. We conclude with recommendations to avoid assumptions that family or friends will provide unpaid care after a hospital discharge. We share advocacy suggestions for improving community supports for caregivers and those with long-term care needs.

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Barriers and facilitators to cancer treatment adherence for older Rural African Americans: Understanding the experience from the view of patients and their caregivers

The purpose of the present study was to understand the barriers that a particularly vulnerable sub-population of older adults experience in adhering to cancer treatments in rural eastern North Carolina. Qualitative descriptive interviews were completed with 16 individuals (8 cancer patients and their caregivers) about the challenges they face in adhering to cancer treatments. Three themes emerged based on the analysis which included transportation and financial barriers, and assistance that facilitated patients to adhere to treatment protocols. Transportation barriers were those associated with both the formal and informal systems. Financial barriers were related to costs associated with treatment. Participants also reported on ways in which adherence was facilitated via both formal and informal means. Our findings support those of previous research on treatment adherence and add information on the actions patients take in response to barriers that can negatively impact their disease trajectory. The knowledge gained can inform service providers about the issues in treatment adherence and help identify interventions that could support caregivers and patients to circumvent such challenges. 

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Attributes of caregivers' quality of life: A perspective comparison between spousal and non-spousal caregivers of older patients with cancer

Purpose: With the aging population, our current understanding of patients with cancer and their family caregivers needs to be expanded to older patients with cancer and their caregivers. By differentiating spousal caregivers and non-spousal caregivers, we aimed to investigate the universalities and particularities of caregiving for older patients with cancer.; Methods: Through 11 cancer centers in South Korea, 358 patient-caregiver pairs were recruited in this cross-sectional study. Patients were of gastric, colorectal, or lung cancers, and caregivers were those who accompanied the patients to the clinic. Along with socio-demographic variables, medical records of the patients, and caregiving-related measurements, the caregiver's quality of life (AC-QOL) was rated both by patients and by caregivers.; Results: Statistically significant attributes of ACQOL included patient's age, caregiving duration, caregiver's concern about financial burden, caregiver's self-evaluation of their own physical health, and work conflicts due to caregiving for spousal caregivers (R2 = 0.687). For non-spousal caregivers, caregiving duration, caregiver's concern about financial burden, caregiver's self-evaluation of their own physical health, and family conflicts due to work were found significant (R2 = 0.272). Also patients rated ACQOL in higher accordance with their spousal caregivers than with non-spousal caregivers.; Conclusion: The needs of spousal caregivers and non-spousal caregivers might vary, which should inform the effective and efficient channeling of support for family caregivers. Future research suggestions, along with the study limitations, are discussed.

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Association between sleep, care burden, and related factors among family caregivers at home

Aim: Several studies have reported a negative correlation between depressive symptoms and family caregivers' (FCs) subjective sleep status. However, there is a paucity of information on the association between objective/subjective sleep status, care burden, and related factors.; Methods: Participants were 23 pairs of care receivers (CRs; Mage = 82.7 ± 8.5 years; 69.6% women) receiving long-term care at home and their FCs (Mage = 66.9 ± 11.0 years; 69.6% women). At baseline, demographic data, subjective sleep status (Pittsburgh Sleep Quality Index; PSQI), WHO-5 well-being, depressive mood, and frequency of going outdoors were collected. FCs wore a small, wrist-worn device with an accelerometer to assess objective sleep status for a consecutive 24-h 2-week period, and they answered the Zarit Burden Interview short version (ZBI) every night before sleep. After 3 months, CR status was collected and analysed retrospectively.; Results: The mean total sleep time over 2 weeks was 349.5 ± 69.6 min. The mean ZBI score over 2 weeks was 8.8 ± 6.8, which was significantly correlated with total sleep time (r = -0.42; P < 0.05), total time in bed (r = -0.44; P < 0.05), PSQI (r = 0.62; P < 0.01), frequency of going outdoors by CRs (r = -0.42; P < 0.05), and WHO-5 well-being among CRs (r = -0.50; P < 0.05). Multiple regression analyses revealed that total sleep time (β = -0.51; P < 0.05) was significantly associated with care burden (adjusted R2 = 0.45). At the 3-month follow-up, four CRs had been hospitalised or died, and their FCs displayed significantly severe care burden and slept less than at baseline.; Conclusions: Reduced objective total sleep time is significantly associated with the severity of care burden among FCs. Home-based care is critical in Japan; therefore, it is meaningful to determine how to reduce care burden.

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Challenges and needs of informal caregivers in elderly care: Qualitative research in four European countries, the TRACE project

Background: Providing informal care may affects caregivers' life in different ways. Determining the needs of caregivers and supporting them can improve both the quality of life of the caregivers, as well as the elderly they take care of. Objective: To explore the experiences and needs of the informal caregivers in four countries. Design: Qualitative research method was used in the study. Methods: The qualitative data was collected through focus groups and individual interviews between December 2016–May 2017. In all countries interviews were conducted in the mother language of the informants. Informants of the qualitative research were adult people who take primary care of an individual with chronic diseases, aged 65 years or older. Data were collected from 72 informal caregivers from four European countries. Inductive content analysis was performed. Results: Informal caregivers identified 2 themes, 5 subthemes, 19 categories and 7 subtcategories. The themes highlighted two major issues: informal caregiver's challenges and needs related to the management of care of elderly and caregivers' personal needs. Conclusion: The important and charming results of the present study are, difficulties of managing caregiver's own life, and coping with emotions are common in four countries. Identifying challenges and needs of informal caregivers enable healthcare professionals to develop care strategies and plan interventions focused to support and help to reduce the burden of care for elderly with chronic diseases. 

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Community Social Capital and Positive Caregiving Experiences Among Adult-Children Caregivers of Older Adults With Disabilities in Urban China

The present study aimed to examine the association between community social capital and positive caregiving experiences among adult-children caregivers of disabled older adults in urban China. Data for this study were derived from the 2016 wave of the Longitudinal Study on Family Caregivers for Frail Older Adults Aged 75 or Above in Shanghai. The final analysis featured 440 disabled older adult and adult-children caregiver dyads. Multiple indicators and multiple causes modeling was used to test the proposed model from a structural equation modeling perspective. Provision of support to others was significantly associated with self-affirmation. Citizenship activity was significantly associated with life enrichment. Support of units (i.e., employers) was significantly associated with self-affirmation and life enrichment. The findings support the integration of the stress process model and social capital theory and highlight the important role of community social capital in enhancing the subdimensions of positive caregiving experiences. Policy and intervention implications are discussed.

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Cloud and Internet of Things Technologies for Supporting In-House Informal Caregivers: A Conceptual Architecture

Persons in a situation of dependency, or independent but with deficiencies in their autonomy, have specific needs for a better management of their long-term care. New sensing technologies based on real-time location systems, mobile apps, the Internet-of-Things (IoT) paradigm and cloud systems can be used to collect and process information about their activity and their environment in a continuous and truthful way. In this chapter, we analyse current solutions available to support informal caregivers and propose an innovative framework based on the integration of existing IoT products and services of cloud architectures. From the technological point of view, the system we propose is focused on the integration and combination of technologies for providing support for the informal caregiver in long-term care. The differential factor of these technologies is the customization level according to the specific context of the end-users. The main contribution of the proposed systems relies on the intelligence and the management of recorded events to create complex and reliable alerts, and its ability to configure multiple end-user instances and configurations (e.g.: needs, countries, regions, cultures). These type of systems should be sustainable and efficient, and that is why the inclusion of cloud technologies can grant its flexibility and scalability. 

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Worry about Performance: Unravelling the Relationship between 'Doing More' and 'Doing Better'

Objective: Recent studies have described worry about caregiver performance (WaP) as a distinct dimension of caregiver burden. We aimed to explore care recipient and caregiver characteristics between the concordant and discordant WaP groups in a population of caregivers of older adults with cognitive impairment. The secondary objective is to explore if there are differences between high and low WaP subsets in the 'doing more' and 'doing better' groups. Design, setting and participants: This is a retrospective study of 936 dyads of community-dwelling older adults with cognitive complaints and their primary family caregiver from a hospital in Singapore. Measurements: We performed descriptive and inferential statistics of the characteristics of caregivers and patients. We categorized caregiver-patient dyads into four groups, namely concordant (high vs low WaP) and discordant ('doing more' vs 'doing better') groups. For both concordant and discordant groups, we further defined low and high WaP subgroups using tertile cutoffs. Results: The concordant low WaP group is predicted by the spousal relationship (p<.001) and care recipients with fewer neuropsychiatric symptoms (p<.001). There is no significant difference between the discordant groups, which were predominantly the adult children. Further analysis of subgroups found that in the 'doing better' group, there were more spouses in the high as compared to low WaP subgroups, with the reverse true in the 'doing more' group. In the 'doing more' group, caregivers with high WaP also had higher total ZBI (p<0.05) with higher factors (Fl, F2 and F3) scores (p<0.05). They also endorsed higher NPI-Q scores (p=0.045) particularly in the domain of depression / dysphoria (p=0.034). These differences are not seen in the 'doing better' group. Conclusion: Our study suggests an association with caregiver characteristics (adult child) and disruptive behavior in the 'do more' high WaP discordant group. Delineating into the high and low WaP subgroups can help us identify the 'do more' high WaP subgroup that merits further attention and early intervention.

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Words Matter: The Language of Family Caregiving

The authors discuss the vocabulary used to describe caregivers, They mention the role of family caregiving in geriatric care, how the use of the word "informal" to describe this caregiving is inadequate for the work that is done, and efforts to change how family caregivers are described.

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What do caregivers value and is there agreement in perception of met needs between nurses and caregivers?

Introduction: There is an increasing reliance on informal caregivers to continue the care of patients after discharge. This is a huge responsibility for caregivers and some may feel unprepared for the role. Without adequate support and understanding regarding their needs, patient care may be impeded. This study aimed to identify the needs valued by caregivers and if there was agreement between acute care nurses and caregivers in the perception of whether caregiver needs were being met. Methods: We conducted face-to-face interviews with 100 pairs of acute care nurses and caregivers. Participants were recruited from inpatient wards through convenience sampling. Questionnaires included demographic data of nurses and caregivers, patients' activities of daily living, and perception of caregiver needs being met in six domains of care. Independent t-test was used to compare mean values in each domain, and intraclass correlation coefficient was used to compare agreement in perception. Results: Caregivers valued reassurance the most. Three domains of care needs showed significant differences in perception of caregiver needs being met:reassurance (p = 0.002), honesty and timeliness (p = 0.008), and kindness and genuine care (p = 0.026). There was poor agreement in all six domains of caregiver needs being met between nurses and caregivers. Conclusion: Although caregivers valued reassurance the most, there was poor agreement between acute care nurses and caregivers in the perception of caregiver needs being met. Hence, more attention should be paid to the caregiver's needs. Further studies can examine reasons for unmet caregiver needs and interventions to improve support for them.

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A validation study of the ICECAP-O in informal carers of people with dementia from eight European Countries

Purpose: The pressure on healthcare budgets remains high, partially due to the ageing population. Economic evaluation can be a helpful tool to inform resource allocation in publicly financed systems. Such evaluations frequently use health-related outcome measures. However, in areas such as care of older people, improving health outcomes is not necessarily the main focus of care interventions and broader outcome measures, including outcomes for those providing informal care, may be preferred when evaluating such interventions. This paper validates a recently introduced well-being measure, the ICECAP-O, in a population of informal carers for people with dementia from eight European countries.; Methods: Convergent and discriminant validity tests were performed to validate the ICECAP-O using data obtained in a sample of 451 respondents from Germany, Ireland, Italy, the Netherlands, Norway, Portugal, Sweden and the UK. These respondents completed a number of standardized questionnaires within the framework of the Actifcare project.; Results: The ICECAP-O performed well among informal carers, in terms of both convergent and discriminant validity. In the multivariate analysis, it was found to be significantly associated with the age of the person with dementia, EQ-5D-5L health problem index of the person with dementia, carer-patient relationship, care recipient CDR, carer LSNS Score, the PAI score, and Perseverance Time.; Conclusion: The ICECAP-O appears to be a valid measure of well-being in informal carers for people with dementia. The ICECAP-O may therefore be useful as an outcome measure in economic evaluations of interventions aimed at such informal carers, when these aim to improve well-being beyond health.

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Using sensor-based technology for safety and independence - the experiences of people with dementia and their families

Background: The majority of people with dementia prefer to live independently and safely in their own home cared for by their family members. Much effort has been invested in the development of technology, such as sensor-based networks. Many challenges remain, in particular gaining more knowledge about their experiences and perceived benefits. This study aimed to explore experiences, needs and benefits with using sensor-based technology for safety and independence in the homes of people with dementia and their family members.; Methods: This study is part of the TECH@HOME project, aiming to evaluate the effects of sensor-based technology on independence among people with dementia and caregiver stress among their family members. This study applied an inductive, qualitative approach with semi-structured interviews of people with dementia (n = 9) and family members (n = 21). The participants were interviewed between June and September 2018 after using the technology for at least 6 months. The interviews were analysed with manifest content analysis.; Results: Our findings highlighted that technology was considered as a precaution and a safety measure that could provide a sense of having control of the everyday life of the person with dementia. Understanding and acceptance of the technology were as important, together with the reliability of the technology. Ethical dilemmas related to the monitoring of the person with dementia in the home were also raised.; Conclusion: This study provides insights into how people with dementia and family members experience and benefit from using sensor-based technology in their own homes. The knowledge generated is essential for healthcare professionals and policymakers developing and implementing care and service systems including technology, as well as for the industry.

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Trust in older persons: A quantitative analysis of alignment in triads of older persons, informal carers and home care nurses

Self‐management by older persons could be influenced by the level of trust found in triads of informal carers, formal care providers and care recipient, the older person. Little research has been done on care providers' trust in older persons. This study aims to explore the level of trust that informal carers and home care nurses have in older persons, the extent of alignment in triads and the relationship between trust in older persons and self‐management. We conducted a cross‐sectional survey study in the Netherlands, sampling 133 older persons, 64 informal carers and 72 nurses, which resulted in 39 triads. Alignment level was analysed through Intraclass Correlation Coefficient 1 scores and absolute and mean difference scores. Correlation analysis and one‐way analysis of variance measured the relationship between trust and self‐management. The results show that triads contain both alignment and misalignment. Misalignment occurs mostly when informal carers and nurses have little trust in the older person while this person views their own behaviour towards their caregivers positively. Care providers' trust levels relate significantly to their perception of the person's ability to self‐manage, but not to the person's self‐rated ability. This could be explained by care providers not communicating their intrinsic trust in the older person to them. Trust building could be enhanced by organising discussions of mutual expectations of trust and both formal and informal care providers could benefit from compassionate assessment training, to learn how to openly express their trust in the older person. 

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Transitions to family caregiving: enrolling incident caregivers and matched non-caregiving controls from a population-based study

Background and Aim: Providing care to an older adult with a disability has been associated with increased risk to the caregiver's health, but most previous studies of caregiving and health compare persons who are already caregivers with poorly matched non-caregiving controls and are often based on convenience samples. In this report, we describe the enrollment of persons who transitioned into a family caregiving role while participating in a national epidemiological study.; Methods: Participants in the REasons for Geographic And Racial Differences in Stroke (REGARDS) study were asked on two occasions 9-14 years apart if they were providing care on an ongoing basis to a family member with a chronic illness or disability. Those who answered "no" and "yes", respectively, to this caregiving question and reported sufficient caregiving responsibilities after their transitions were enrolled in the present study as incident caregivers (N = 251). Participants matched on multiple demographic and health history variables and who reported no history of caregiving were enrolled as non-caregiving controls (N = 251).; Results: Among eligible participants, 84% agreed to participate, and 47% of caregivers reported caring for a person with dementia. Descriptive analyses confirmed the success of the matching procedures for balancing the groups on multiple demographic and pre-caregiving health variables. Depressive symptoms and perceived stress increased significantly after the transition to caregiving.; Conclusion: Comparable, population-based samples of incident caregivers and matched non-caregivers have been enrolled. Future analyses will examine within-person changes in health and circulating biomarkers as a function of the transition to caregiving.

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"Tipping point" concept analysis in the family caregiving context

Aim: Analyze the concept "tipping point" in the older adult family caregiving context to further knowledge about caregiving families, enhancing transdisciplinary theory, research, and practice. Background: While used commonly in some disciplines, how "tipping point" has been used in health care, generally, and in relation to caregiving families, specifically, is less clear. This project was conducted to offer conceptual clarity to tipping point. Design: Walker and Avant's framework. Data Source: Searches of scholarly literature in PsycINFO, CINAHL, and PubMed using the search term "tipping point" in either title or abstract. Review Methods: Definitions used were extracted; instances when the concept was implied but the actual term "tipping point" was not used and contexts where the term was used or implied were identified. Results: The composite definition of a caregiving tipping point is a seemingly abrupt, severe, and absolute change event involving either the older adult or caregiver(s), or both that indicates a breakdown in the status quo of the caregiving system. Conclusions: Transdisciplinary research, care, and policy should treat caregiving families as complex systems, use longitudinal assessments, and include colloquial communication. Early detection of impending tipping points will provide family‐centered decisional support and enhance families' quality of life and safety.

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Synergistic Dependencies in Partner and Elder Abuse

Although dependency in its various forms has been widely studied, most investigations examine manifestations of dependency within individuals. Scrutiny of the literature reveals that synergistic dependencies—situations wherein both members of a dyad manifest excessive dependency of one form or another—play a role in some forms of partner and elder abuse. High levels of interpersonal or economic dependency in a woman coupled with high levels of interpersonal dependency in her male partner increase the likelihood of partner abuse. When family member caregivers are economically dependent on a functionally dependent older adult, risk for elder abuse increases. Although these synergistic dependencies differ across abuse domains, two prevailing themes emerge. The interpersonal, economic, and functional dependencies of abused partners and older adults are associated with feelings of helplessness, powerlessness, and an inability to challenge the abuser. The common dependency-related dynamic in perpetrators of abuse is fear—fear of abandonment leading to partner abuse, and fear of loss of financial support increasing risk for elder abuse. 

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Supporting family caregiver engagement in the care of old persons living in hard to reach communities: A scoping review

Today, 8.5% of the world's population is 65 and over, and this statistic will reach 17% by 2050 (He et al., U.S. Census Bureau, international population reports, P95/16‐1, An ageing world: 2015, U.S., 2016). They are the people who, with increasing age, will find themselves more closely interfacing with the national health system, which in many countries shows strong imbalances between rural and urban areas. In this context, a fundamental role is played by the relatives who find themselves becoming informal caregivers to compensate for lack of services. To date, however, little has been done to help these people. In this article, we want to identify the nature and extent of research evidence that had its objective to help informal caregivers in rural, hard to reach areas (Grant & Booth, Health Information & Libraries Journal, 2009, 26, 91). Following the approach set out by Arksey and O'Malley (International Journal of Social Research Methodology, 2005, 8, 19), we conducted a scoping review in May 2018 and closed the review with an update in September 2018. We identified 14 studies published from 2012, the European Year of Active Ageing, promoted by the European Commission, which had three domains of implementation: emotional support to decrease the emotional burden of caregivers, educational support to increase their skills, and organisational support to improve the mobility of caregivers and carereceivers. Although informal caregivers play a fundamental role in many countries, the studies that have been involved in alleviating their caring burden are few; nevertheless, they provide interesting indications. This lack of attention confirms how this portion of the population is still neglected by scientific research and risks having unequal access to health and social care. Future research is needed, not only to create and improve services to caregivers in rural, hard to reach areas, but also to evaluate and focus on the participation and the engagement of caregivers in the co‐design of these services. 

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Supporting Active Aging for Persons with Severe Disabilities and Their Families Across the Life Course

Individuals with severe disabilities and their families can engage in person-centered and family-centered planning for aging using a life course view. Viewing aging within the context of the family and disability is essential because many people with severe disabilities depend on their families for supports in daily living, social relationships, and for activities within communities. Since eligibility-based supports are often limited, parents and other family members play large roles both financially and socially in helping their family member move through the life course into active and healthy aging. Charting the LifeCourse is a framework that both people with disabilities and their families can use to achieve desired life outcomes over time. Issues that impact active and healthy aging for people with disabilities include the aging of caregivers, death of a caregiver, limited resources for supporting physical and health concerns, staying active in the community following retirement, and maintaining social emotional connections.

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Social Participation and Health Outcomes Among Caregivers and Noncaregivers in Great Britain

This study investigates the relationship between social participation and health outcomes between caregivers and noncaregivers in Great Britain. Previous studies indicate that the impact of informal caregiving on the carer's health is complex, and the intensity of care provision has an adverse impact on the caregivers' health, while social participation could have a protective role in this respect. Using qualitative and quantitative data from Wave 8 of the 1958 National Child Development Study, the analysis shows that social participation has a positive effect on the carers' mental health and subjective well-being. Individuals who did not engage in social participation reported lower levels of mental health and control, autonomy, self-realization and pleasure (CASP) scores than those engaged in social participation. The qualitative results showed the barriers to social participation of caregivers to be time, energy, and finance. We discuss ways in which the government could address such barriers to improve the level of social participation among caregivers.

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Sleep Quality in Caregivers of Older Patients with Schizophrenia Spectrum and Bipolar Disorders: A Case-Control Study

Objectives: Prior literature has documented the global burden of serious mental illnesses. The present study aimed to compare the sleep quality in caregivers of older patients with schizophrenia spectrum and bipolar disorders with control participants who did not serve as caregivers. Methods: We performed a case-controlled, cross-sectional study among family caregivers of older patients with psychotic disorders in Razi Hospital, Tunisia. Subjective sleep quality was assessed using the Pittsburgh Sleep Quality Index Scale (PSQI). Results: Fifty caregivers of older patients (≥ 60 years) with schizophrenia spectrum and bipolar disorders, and 50 matched controls were enrolled. The three sub-dimensions of the PSQI, namely subjective sleep quality, sleep duration, and sleep efficiency, as well as overall PSQI scores, were worse for caregiver participants. Hierarchical multiple regression analyses predicting PSQI scores revealed that caregivers' age and marital status were the only significant predictors in the final model. Conclusions: Older adults with severe mental disorders constitute a vulnerable population which generates a significant burden of care, and impacts their caregivers' subjective sleep quality. Clinical Implications: Family interventions, including sleep interventions, should be considered as an integral component of treatment for serious mental illnesses. When promoting sleep quality, older and single caregivers should be targeted.

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A qualitative systematic review of factors affecting caregivers' decision-making for care setting placements for individuals with dementia

Aims: To synthesize factors that facilitates or hinders the choice of a new living environment for a person with dementia by the informal caregiver.; Background: In an effort to develop evidenced-based interventions to support caregivers, it is essential to explore their experience.; Design: A qualitative systematic review using thematic synthesis. Studies published up to July 2019 were retrieved from four electronic databases. Two independent reviewers selected studies and assessed their methodological quality.; Findings: Choosing a new living environment for a person with dementia includes two main concerns for caregivers: (1) evaluating the current living environment and caregiving arrangements; and (2) evaluating potential living environments. The key factor, that is acceptability, reflects the extent to which a change of living environment is personally and socially perceived as desirable, suitable, as well as decent for all stakeholders.; Conclusions: Future interventions must consider that caregivers' decision-making process is highly social and value-laden.

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The mediating effects of leisure engagement on relationships between caregiving stress and subjective wellbeing among family caregivers of persons with cognitive impairment: A cross-sectional study

Family caregivers of persons with cognitive impairment experience changes in reductions in leisure engagement, which can decrease their subjective wellbeing (leisure satisfaction, negative affect and positive affect). We recruited 100 dyads of patients with cognitive impairment and family caregivers by convenience sampling from outpatient memory clinics and daycare centers in northern Taiwan. Hierarchical regression analysis tested the mediating effects of leisure engagement on the relationship between caregiving stress and subjective wellbeing. Results indicated that the restorative experience of event/tourism activities (β = 0.23, p < .05) significantly mediated between caregiving stress and leisure satisfaction. In addition, the only significant mediator between caregiving stress and negative affect was leisure barriers (β = 0.21, p < .05). Both of the regression models explained 27% of the variance. Future development of leisure interventions should focus on reducing leisure barriers and providing event and tourism activities to the dyads. 

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"It's More than Just Needing money": The Value of Supporting Networks of Care

It is well established in research, practice, and policy that unpaid caregivers (family and friends of people with care needs) experience stress in their role. Supports that have been put in place by policy planners and program developers to support caregivers may not be accessed by caregivers at all or may do little to reduce their stress. Accessing personal resources (education, finances), in addition to social resources (individual connections) and societal resources (community supports) are critical in fostering resilience in caregivers (helping them adapt to stress and adversity). Social capital theorists argue that creating connections at various levels can improve access to resources. This research, through qualitative interviews (n = 21), identifies the different levels of resources required to address the needs of caregivers. Our findings indicate that interventions that focus on access to personal-level resources (education, funding) are important, but are on their own insufficient. Of more importance were interventions that work to improve relationships between formal providers and families; access to interdisciplinary teams; cross-sectoral collaborations; and inter-organization relationships, highlighting that a system that works together is likely to improve caregivers' access to resources.

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Is Family Caregiving Associated With Inflammation or Compromised Immunity? A Meta-Analysis

Background and Objectives Family caregiving stress has been widely reported to have negative effects on circulating biomarkers of immune system function and inflammation. Our goals were to systematically review this literature and conduct a meta-analysis on the extracted effects. Research Design and Methods A systematic search of published studies comparing caregivers and noncaregivers on biomarkers measured from blood samples was conducted in the PubMed, Embase, and Cochrane databases. This search identified 2,582 articles and abstracts. After removing duplicative papers and studies not meeting inclusion criteria, 30 articles were identified that reported analyses on 86 relevant biomarkers from 1,848 caregivers and 3,640 noncaregivers. Results Random-effects models revealed an overall effect size across all biomarkers of 0.164 SD units (d). A slightly larger overall effect (d = 0.188) was found for dementia caregivers only. Immune system comparisons yielded somewhat larger differences than inflammation comparisons. Most studies used small convenience samples, and effect sizes were larger for studies with moderate or high bias ratings than for studies with low bias ratings. No significant associations were found in studies that used population-based samples. Discussion and Implications Caregivers had small but significantly reduced immune system functioning and greater inflammation than noncaregivers, but associations were generally weak and of questionable clinical significance. The absence of clear associations from low bias studies and population-based studies underscores concerns with possible selection biases in many of the convenience samples. Population-based studies that assess biomarkers before and after the onset of caregiving might add much clarity to this literature. 

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Informal caregivers in Chile: the equity dimension of an invisible burden

Population aging is driving a process of increase in long-term care needs in Chile and many countries around the world. In this context, this article asks about the consequences of this increase in informal caregivers, emphasizing the inequity issues arising from these changes. Using the CASEN 2017 survey, caregivers are identified and matched to people with long-term care needs. Results show that most caregivers are women, and a large fraction of them are also elderly; this is similar to what has been found previously in developed countries. Caregivers have fewer opportunities than non-caregivers, which translates into lower income-generating ability and higher poverty. The nature of these tasks creates a vicious cycle in which people get trapped with increasing needs and fewer resources to meet them. Important differences arise between caregivers and the rest of the population. Even more concerning is that these disparities are avoidable to some extent, adding an equity dimension to the problem. This emphasizes the need for the generation of policies that will support caregivers and meet their needs.

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Family experience in providing support and the achieving of post-stroke late adulthood development

Objectives: Supporting the achievement of post-stroke late adulthood development is a unique experience that impacts heavily on families. The purpose of this study was to provide an overview of family experience in providing support post-stroke to a family member and enabling them to achieve late adulthood development and then to interpret this.; Method: The research used a qualitative design with a descriptive phenomenology approach. The participants were 14 caregivers of the elderly.; Results: The results (1) the impact of the bio-psycho-socio-spiritual on the elderly post-stroke survivor, (2) how the family fulfills the needs of the post-stroke elderly person, (3) the impact of the post-stroke period on the elderly by family members, (4) the achievement of post-stroke late adulthood development by family members, and (5) the meaning of providing care for the post-stroke elderly survivor.; Conclusions: This research identified 5 themes and recommendations are that psychoeducation for the carers of stroke survivors should be improved.

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Examining satisfaction of older adult patients and their caregivers following traumatic injury: a cross-sectional study of three level I trauma centres

Objective: To explore satisfaction of care received by older adult patients and their primary caregivers following traumatic injury.; Design: Prospective, cross-sectional study using the FAMCARE (Family Satisfaction with Advanced Cancer Care Scale) satisfaction surveys prior to discharge.; Setting: Three level I trauma centres in Colorado from November 2016 to December 2017.; Participants: Trauma patients ≥55 years old and their primary caregivers.; Outcome Measures: Overall mean (SD) satisfaction, satisfaction <80% vs ≥80%, and mean satisfaction by survey conceptual structures.; Results: Of the 319 patients and 336 caregivers included, the overall mean (SD) patient satisfaction was 81.7% (15.0%) and for caregivers was 83.6% (13.4%). The area with the highest mean for patient and caregiver satisfaction was psychosocial care (85.4% and 86.9%, respectively). Information giving was the lowest for patients (80.4%) and caregivers (80.9%). When individual items were examined, patients were significantly more satisfied with 'availability of nurses to answer questions' (84.5 (15.3) vs 87.4 (14.8), p=0.02) and significantly less satisfied with 'speed with which symptoms were treated' (80.6 (17.9) vs 84.0 (17.0), p=0.03) compared with caregivers. Patients with a history of smoking (least squares mean difference: -0.096 (-0.18 to -0.07), p<0.001) and hospital discharge destination to an outside facility of care (adjusted OR: 1.6 (1.0 to 2.4), p=0.048) were identified as independent predictors of lower overall satisfaction in generalised linear and logistic models, respectively.; Conclusions: Our data suggest that patients' medical history was driving both patient and caregiver satisfaction. Patient characteristics and expectations need to be considered when tailoring healthcare interventions.

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Effect of the Tailored, Family-Involved Hospital Elder Life Program on Postoperative Delirium and Function in Older Adults: A Randomized Clinical Trial

Importance: Postoperative delirium (POD) is a common condition for older adults, contributing to their functional decline.; Objective: To investigate the effectiveness of the Tailored, Family-Involved Hospital Elder Life Program (t-HELP) for preventing POD and functional decline in older patients after a noncardiac surgical procedure.; Design, Setting, and Participants: A 2-arm, parallel-group, single-blind, cluster randomized clinical trial was conducted from August 24, 2015, to February 28, 2016, on 6 surgical floors (gastric, colorectal, pancreatic, biliary, thoracic, and thyroid) of West China Hospital in Chengdu, China. Eligible participants (n = 281) admitted to each of the 6 surgical floors were randomized into a nursing unit providing t-HELP (intervention group) or a nursing unit providing usual care (control group). All randomized patients were included in the intention-to-treat analyses for the primary outcome of POD incidence. Statistical analysis was performed from April 3, 2016, to December 30, 2017.; Interventions: In addition to receiving usual care, all participants in the intervention group received the t-HELP protocols, which addressed each patient's risk factor profile. Besides nursing professionals, family members and paid caregivers were involved in the delivery of many of the program interventions.; Main Outcomes and Measures: The primary outcome was the incidence of POD, evaluated with the Confusion Assessment Method. Secondary outcomes included the pattern of functional and cognitive changes (activities of daily living [ADLs], instrumental activities of daily living [IADLs], Short Portable Mental Status Questionnaire [SPMSQ]) from hospital admission to 30 days after discharge, and the length of hospital stay (LOS).; Results: Of the 475 patients screened for eligibility, 281 (171 [60.9%] male, mean [SD] age 74.7 [5.2] years) were enrolled and randomized to receive t-HELP (n = 152) or usual care (n = 129). Postoperative delirium occurred in 4 participants (2.6%) in the intervention group and in 25 (19.4%) in the control group, with a relative risk of 0.14 (95% CI, 0.05-0.38). The number needed to treat to prevent 1 case of POD was 5.9 (95% CI, 4.2-11.1). Participants in the intervention group compared with the control group showed less decline in physical function (median [interquartile range] for ADLs: -5 [-10 to 0] vs -20 [-30 to -10]; P < .001; for IADLs: -2 [-2 to 0] vs -4 [-4 to -2]; P < .001) and cognitive function (for the SPMSQ level: 1 [0.8%] vs 8 [7.0%]; P = .009) at discharge, as well as shorter mean (SD) LOS (12.15 [3.78] days vs 16.41 [4.69] days; P < .001).; Conclusions and Relevance: The findings suggest that t-HELP, with family involvement at its core, is effective in reducing POD for older patients, maintaining or improving their physical and cognitive functions, and shortening the LOS. The results of this t-HELP trial may improve generalizability and increase the implementation of this program.; Trial Registration: Chinese Clinical Trial Registry Identifier: ChiCTR-POR-15006944.

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Differences within Differences: Gender Inequalities in Caregiving Intensity Vary by Race and Ethnicity in Informal Caregivers

Among the 50+ million informal caregivers in the US, substantial gender, racial/ethnic, and socioeconomic disparities in caregiving intensity are well-documented. However, those disparities may be more nuanced: gender disparities in caregiving intensity may vary by race/ethnicity (White, Black, and Hispanic) and socioeconomic status (SES). We used data from the 2011 National Study of Caregiving and applied generalized linear models to estimate associations between three measures of caregiver intensity (ADLs, IADLs, and hours caregiving/month) and the three sociodemographic factors with their interaction terms. Black female caregivers provided significantly higher levels of care than White females and males for both IADL caregiving and hours/month spent caregiving. Black caregivers spent an average of 28.5 more hours/month (95%CI 1.7-45.2) caregiving than White caregivers. These findings highlight the need to understand the complex disparities within population subgroups and how intersections between gender, race/ethnicity, and SES can be used to develop effective policies to reduce disparities and improve caregiver quality-of-life. 

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Delirium Burden in Patients and Family Caregivers: Development and Testing of New Instruments

Background and Objectives Delirium creates distinct emotional distress in patients and family caregivers, yet there are limited tools to assess the experience. Our objective was to develop separate patient and family caregiver delirium burden instruments and to test their content and construct validity. Research Design and Methods Two hundred forty-seven patients and 213 family caregivers were selected from an ongoing prospective cohort of medical-surgical admissions aged ≥70 years old. New patient and family caregiver delirium burden instruments were developed and used to measure the subjective experiences of in-hospital delirium. Delirium and delirium severity were measured by the Confusion Assessment Method (CAM) and CAM-Severity (long form). Results Both Delirium Burden (DEL-B) instruments consist of eight questions and are measured on a 0 – 40 point scale. Final questions had good clarity and relevancy, as rated by the expert panel, and good internal consistency (Cronbach's α =.82–.86). In the cohort validation, Patient DEL-B (DEL-B-P) was 5.1 points higher and Family Caregiver DEL-B (DEL-B-C) was 5.8 points higher, on average, for patients who developed delirium compared to those who did not (p <.001). Test–retest reliability of DEL-B-C at baseline and 1 month was strong (correlation =.73). Delirium severity was mildly-moderately correlated with DEL-B-P (correlation =.34) and DEL-B-C (correlation =.26), suggesting contribution of other factors. Discussion and Implications We created instruments to reliably measure and evaluate the burden of delirium for patients and their family caregivers. Although additional validation is indicated, these instruments provide a key first step toward measuring and improving the subjective experience of delirium for patients and their families. 

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Caring for migrant older Moroccans with dementia in Belgium as a complex and dynamic transnational network of informal and professional care: A qualitative study

Background: Due to its labour migration history, Belgium is confronted with an increasingly older population of people of Moroccan background who have been diagnosed with dementia. These migrants came to the country during the labour migration wave of the nineteen-sixties and seventies to work in mines and other industries and they are now ageing. Yet little is known about how dementia care is provided to this older population.; Objectives: This study explores how dementia care is provided to these Moroccan older people with dementia, and what challenges do caregivers face in providing care.; Methods: A qualitative study including 31 informal caregivers of older Moroccan migrants with dementia and professional caregivers in the field of dementia care in several Belgian cities was conducted. After an initial focus group including 6 informal and professional caregivers, individual in-depth interviews were held with 12 informal caregivers of Moroccan decent and 13 professional caregivers. In order to be included in the study, informal caregivers had to have a recent experience in caring for an older family member with dementia. The professional caregivers had to be active in the field of dementia care (General Practitioners, nurses, psychologists,…) and have experience with older migrants with dementia.; Results: Analyses of the collected data reveal that current dementia care is a challenging, complex and dynamic search process. This process is shaped by (1) multiple factors reflecting the changing care needs of the care recipient during the course of the dementia, (2) the individual (transnational) recourses of the informal caregivers and the (3) current (lack of) accessibility of professional dementia care (driven by the absence of an accessible migration-, culture- and religion-sensitive professional care). The limited professional service-use is predominantly compensated through the search for transnational external helpers. The limited migration, cultural and religious sensitivity of current dementia care is often overlooked by professional caregivers.; Conclusion: The study provides a better understanding of the complex reality of dementia care for older migrants in which these different aspects intersect. This understanding enable health professionals and policy makers to develop a better suited care for older migrants with dementia.

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Carer Social Care-Related Quality of Life Outcomes: Estimating English Preference Weights for the Adult Social Care Outcomes Toolkit for Carers

Background: There is increasing interest in assessing the effects of interventions on older people, people with long-term conditions and their informal carers for use in economic evaluation. The Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer) is a measure that specifically assesses the impact of social care services on informal carers. To date, the ASCOT-Carer has not been preference-weighted. Objectives: To estimate preference-based index values for the English version of the ASCOT-Carer from the general population in England. Methods: The ASCOT-Carer consists of 7 domains, each reflecting aspects of social care-related quality of life in informal carers. Preferences for the ASCOT-Carer social care-related quality of life states were estimated using a best-worst scaling exercise in an online survey. The survey was administered to a sample of the general adult population in England (n = 1000). Participants were asked to put themselves into the hypothetical state of being an informal carer and indicate which attribute they thought was the best (first and second) and worst (first and second) from a profile list of 7 attributes reflecting the 7 domains, each ranging at a different level (1-4). Multinomial logit regression was used to analyze the data and estimate preference weights for the ASCOT-Carer measure. Results: The most valued aspect by English participants was the 'occupation' attribute at its highest level. Results further showed participants rated having no control over their daily life as the lowest attribute-level of all those presented. The position of the 7 attributes influenced participants' best and worst choices, and there was evidence of both scale and taste heterogeneity on preferences. Conclusion: This study has established a set of preference-based index values for the ASCOT-Carer in England derived from the best-worst scaling exercise that can be used for economic evaluation of interventions on older individuals and their informal carers.

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Caregiving for older adults requiring hemodialysis: A comparison study

This study examined differences in caregiving appraisal between primary family caregivers of disabled older adults receiving hemodialysis (PFCGs-wHD) and disabled older adults not receiving dialysis (PFCGs-woD). A total of 242 PFCGs -wHD and 335 PFCGs-woD were included in the analyses. We used adjustment by propensity score to control for bias by confounding factors. Caregiving appraisal was measured in terms of role strain, emotional exhaustion, and caregiving satisfaction. On the first task, PFCGs-wHD demonstrated significantly worse levels on all three appraisal indicators than did PFCGs-woD. On the second task, only higher emotional exhaustion was significantly mediated by higher role strain in PFCGs-wHD. Further, PFCGs-wHD status directly influenced lower caregiving satisfaction without mediation by higher role strain. Caregiving for disabled older adults receiving HD may be associated with significant challenges for caregivers. 

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Caregiving Across Diverse Populations: New Evidence From the National Study of Caregiving and Hispanic EPESE

Background and Objectives: The current study employs population-based data to determine the extent to which stress and coping factors are related to self-rated health and distress for informal caregivers (CGs) from the 3 largest racial/ethnic groups in the United States (non-Latino White, African American, and Mexican American).; Research Design and Methods: Data on primary, informal CGs are obtained from the 2015 National Study of Caregiving (NSOC) (n = 667) and the 2016 Hispanic Established Populations for the Epidemiologic Studies of the Elderly (H-EPESE) CG supplement (n = 287). Logistic regression models of health are presented for all CGs and specifically for dementia CGs.; Results: Caregiving intensity is related to health for non-Latino White CGs and African American dementia CGs. Support from family and friends is related to better self-rated health, but only for African American dementia CGs. While better relationship quality is related to better health for African American CGs and White dementia CGs, formal support utilization is related to worse CG health for Mexican American dementia CGs.; Discussion and Implications: Findings emphasize the importance of earlier detection and intervention with CGs at the beginning in the caregiving career, the interplay of formal and informal support, and appropriate ways to intervene with dementia CGs. Culturally tailored home- and community-based care options are needed to supplement the low levels of CG support, especially for the Mexican American population.

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Caregivers of hip fracture patients: The forgotten victims?

Introduction: The burden that family and friends assume when caring for hip fracture patients can negatively impact the caregiver's quality of life, relationships, and the decision to place the patient in a care facility. The purpose of this study was to evaluate the burden of caregiving for intertrochanteric hip fractures to better counsel patients and caregivers in order to prevent delayed admission to a care facility. Methods: A retrospective analysis of a prospectively gathered elderly hip fracture database identified 29 patients and their caregivers with complete 6 month follow-up. Caregiver burden and depression scales were administered to the primary caregiver in the immediate perioperative period (baseline), at 3 month follow-up, and at 6 month follow-up. At each time point caregivers reported the effects of caregiving on their finances, work hours, relationships, and their willingness to admit the patient to a long-term care facility. Results: At 6 month follow-up, <30% of caregivers reported negative effects on their finances, relationships, work hours, or intent to place the patient in care facility, while 77% endorsed cherishing their time spent as a caregiver. The number of caregivers with a high caregiver burden remained stable at 20% over the 6 month follow-up; these caregivers were more likely to have a depressed mood (p < 0.01), to consider placement of the patient into a long-term care facility (p < 0.01), and to have negatively affected finances (p = 0.03) and relationships (p < 0.01). Conclusions: High degrees of burden were experienced by 20% of caregivers of hip fracture patients. Caregivers with high caregiver burdens were more likely to consider placement of the patient into a long-term care facility. Risk factors for high caregiver burdens should be identified to optimize the quality of caregiving after discharge and to prevent delayed admission to a long-term care facility. Level Of Evidence: Level IV, case series.

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Depressive symptoms among adult children caregivers in China: moderating effects of working status and gender

Objectives: With over one-fifth of the world's older population, shrinking family size and increasing number of women in the workforce, elder care is a growing challenge for families in mainland China. This study explored the moderating effect of working status and gender on caregiving time and depressive symptoms among adult children caregivers in mainland China. Method: Participants were 660 adult children caregivers from a nationally representative sample of individuals aged 45 + (N = 13,204) who participated in the China Health and Retirement Longitudinal Study (CHARLS) Wave 2 (2013). Multiple linear regression was used to analyze the direct effect of caregiving time and the moderating effects of working status and gender on symptoms of depression among caregivers. Results: Significant main effect between caregiving time and depressive symptoms was found controlling for demographic covariates. The three-way interaction between working status, gender and caregiving time was also significant. Working status and gender moderate the effect of caregiving time on depressive symptoms: among employed men and women caregivers, spending more hours providing care predicted fewer depression symptoms. Unemployed men caregivers who spent more hours providing care showed highest level of depressive symptoms. Conclusion: The relationship between caregiving time and depressive symptoms was moderated by working status and gender. Future research is needed to explore factors that influence changes in caregivers' health and well-being over time. 

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Personalisation, customisation and bricolage: how people with dementia and their families make assistive technology work for them

Assistive technologies (ATs) are being 'mainstreamed' within dementia care, where they are promoted as enabling people with dementia to age in place alongside delivering greater efficiencies in care. AT provision focuses upon standardised solutions, with little known about how ATs are used by people with dementia and their carers within everyday practice. This paper explores how people with dementia and carers use technologies in order to manage care. Findings are reported from qualitative semi-structured interviews with 13 people with dementia and 26 family carers. Readily available household technologies were used in conjunction with and instead of AT to address diverse needs, replicating AT functions when doing so. Successful technology use was characterised by 'bricolage' or the non-conventional use of tools or methods to address local needs. Carers drove AT use by engaging creatively with both assistive and everyday technologies, however, carers were not routinely supported in their creative engagements with technology by statutory health or social care services, making bricolage a potentially frustrating and wasteful process. Bricolage provides a useful framework to understand how technologies are used in the everyday practice of dementia care, and how technology use can be supported within care. Rather than implementing standardised AT solutions, AT services and AT design in future should focus on how technologies can support more personalised, adaptive forms of care.

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266 Patient and Carers Experience of an Acute Care at Home Team: A Service Evaluation

Background The Aim of the Acute Care at Home Team is to provide acute care to over 65's in the patient's own home, providing assessment and treatment of acute conditions such as pneumonia, urinary sepsis and heart failure. It is a multidisciplinary team that works together to streamline services to enable a patient to stay safely in their own home. A full comprehensive geriatric assessment is carried out in all patients to help improve patient outcomes. The patients have full access to in patient services such as scans, and x-rays. All blood tests are treated as urgent to ensure the patient is in no way disadvantaged by being treated by acute care at home compared with hospital care. The aims and objectives are to explore patient and family experiences and identify any areas for improvement. Methods A service users and carers experience Questionnaire (N=31) was used to gain insight into how satisfied the patient or family were with the service and what the experience was like having the team come into their home. Results Patient satisfaction with this Acute Care at Home Team was reported at 100%. Patients were happy with the care they received, 100% of patients were happy with staff's knowledge of their condition and treatment plan. All of the respondents stated they would both recommend the service and use it again. The qualitative responses were in keeping with 100% satisfaction in that they were positive in nature. Conclusion This service evaluation has shown that patient and carer experience of this Acute Care at Home Team is a positive one, with 100% satisfaction levels. There are some small areas to be improved upon, however the results show this service is providing the over 65 population with a good experience of being treated at home as an alternative to hospital care when acutely unwell. 

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65 The Health and Well-Being of Family Carers of Older People: An Exploratory Cross-Sectional Analysis

Background Family carers are critical to supporting older people to live well in their homes and demand for care at home is projected to increase dramatically into the future. The Irish state and health system, therefore, are dependent upon the supply of family care now and into the future. The health and well-being of older family carers, and carers providing care to older people in the community, is under-researched. Methods A combination of online and postal survey distribution achieved a convenience sample (N=1102) of carers from the membership and network reach of Ireland's largest family carer support and advocacy agency. Results Of those carers providing care to an older adult (n=341), 30% were aged over 64 and 28% reported mild to moderate carer burden. A further 36% reported moderate to severe burden. The average Zarit burden score for carers caring for an older adult was 44 (CI 42:45) and was 39 (CI 36:43) for family carers aged over 64. Among family carers of older adults, 72% reported diagnosis or treatment for physical illness and 42% reported diagnosis or treatment for mental illness. The most frequently cited source of worry for this group was their own health and wellbeing (73%) followed by lack of appropriate supports/services (68%). GPs were the most frequently cited source of support (64%) followed by a PHN (50%). Conclusion The study findings indicate that the lack of appropriate state supports and services for family carers is negatively impacting carer health and well-being. Family carers, including those providing care to older people and those who are themselves aged over 64, need to be consistently identified for intervention by health professionals, particularly GPs and PHNs. 

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119 The Perceptions of Older Patients and their Family or Caregivers Towards Physical Activity and Exercise in Hospital: A Qualitative Study

Background Between 30-60% of older people experience functional decline after hospitalisation which can be accelerated by inactivity in hospital. Family or caregivers can positively affect activity levels of hospitalised older people. We aimed to explore the perceptions of hospitalised older people and their family or caregivers towards physical activity and exercise during an admission to a Specialist Geriatric Ward in an acute hospital Methods A qualitative approach was taken, using semi-structured interviews with eleven patient participants and semi-structured focus groups with four family or caregivers. Thematic analysis was utilised to identify key themes. Results Three similar themes emerged from both groups: 1) personal feelings towards exercise or inactivity, 2) the role family/caregivers could play in facilitating exercise and 3) the role of hospital staff, which all impacted on participants' perceptions towards exercise in hospital. Personal influences including self-efficacy and appreciation of the importance of exercise resulted in more positive views towards activity. There was an acute awareness among some family of the dangers of inactivity. Uncertainty existed regarding the role family or caregivers have in increasing patient activity levels. Some patient participants believed family involvement may increase activity levels, while others thought it would compromise their independence. Both groups identified a need for more patient-specific information regarding activity in hospital. Both groups favoured hospital staff encouraging rather than restricting activity and felt that more doctors encouraging exercise would be helpful. The need for more opportunities for meaningful activity in hospital was highlighted. Conclusion Physical activity and exercise were perceived as important during hospital admission. Hospital staff should facilitate and enable increased opportunities for patient activity, and empower family or caregiver involvement in this where appropriate. 

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175 A Dyadic Approach to Life-Threatening Illness in Older Adults and their Spouse Carers

Background Little research focuses on the older adult with life-threatening illness and their carer simultaneously, nor the role of the interpersonal and familial context around them. The purpose of this study was to identify factors associated with poor mental health and lack of shared appraisal of symptoms. Methods Multilevel modeling was used to examine cross-sectional data from 135 older adult-spouse carer dyads with life-threatening illness (59 with congestive heart failure and 76 with lung cancer). This was a secondary analysis of quantitative data from two studies. Data were gathered using established measures of symptoms (dyspnoea, fatigue, pain), depression, concealment, relationship quality and family support with in-person interviews conducted separately for older adults and their carers. Diagnosis and stage of disease were gathered from clinical records. Results Older adults with heart failure reported significantly more depressive symptoms than older adults with lung cancer, whereas spouses caring for someone with heart failure reported significantly less depressive symptoms than those caring for someone with lung cancer. Greater levels of spouse depressive symptoms were significantly associated with less shared appraisal of the older adult's fatigue and pain interference, controlling for the quality of the relationship between them. Finally, risk factors for higher depressive symptoms of older adults included higher levels of concealing symptoms and worries from their spouse, advanced stage of disease, reporting low relationship quality and low levels of support from family. Risk factors for higher depressive symptoms of spouse carers included being younger and reporting low support from family. Conclusion Findings highlight the importance of taking a dyadic approach to life-threatening illness in older adults and the role of interpersonal and familial variables on the mental health of both members. Interventions to support and strengthen relationships and communication and address depressive symptoms of both members of the dyad are warranted.

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59 Male Family Carers' Perceptions of Formal Support Services, a Meta-ethnography

Background Family carers provide thousands of hours of unpaid work every year, a third of whom are men, however this group are generally under-represented in research. Comparative studies have shown that male carers experience their caring role differently to female counterparts. Social concepts related to masculinity can help to explain help-seeking behaviours of male carers, as well as their attitudes to accessing outside support. Compared to women carers, men have lower rates of uptake of formal support services. This aim of this review, therefore, was to examine accounts of male carers' experiences and perceptions of receiving formal support. Methods The study followed a meta-ethnography process starting with a systematic literature search of five electronic databases. The methodological quality of the included studies was evaluated using the McMaster checklist. Using NVivo 12 software, primary qualitative data was analysed and key themes were identified. Results were synthesised using Noblit and Hare's (1988) process of meta-ethnography, retaining direct quotes from the studies. Results Eighteen studies were included in the final paper. Three main themes were identified: 1) asserting control over the caring role 2) desire to excel in caring role and 3) coping without formal support. Conclusion For the most part, male carers expressed a desire to be competent in their caring role. Perceived loss of control within the caring relationship was a key factor when men had low trust and dissatisfaction with services. Support services that were collaborative, education-based and gender-sensitive were favoured by the men. To engage more male carers, service providers should acknowledge men's experience and capabilities as well as their wish to stay involved in decision-making around care for their family member. For men over the age of 85 male family carers outnumber females in Ireland (CSO 2016). It is important to understand male carers' experience to develop more inclusive supports and consequently increase service uptake

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Mental health of carers in Wales: a national population survey

Background Informal care is increasingly common in ageing populations. However, the impact of caring responsibilities on carers’ mental health remains unclear. We used data from the HealthWise Wales (HWW) cohort to examine the impact of caregiving on the mental health of carers. Methods HWW collects demographic, lifestyle, and opinion data, which are linked to routine health-care records, from individuals aged 16 years or older who live in Wales, UK (n=21 779). Mental health was assessed by use of the short Mental Health Inventory (MHI-5) and self-reported diagnosis of mental health conditions. Data on diagnosis of common mental disorders (CMD), including depression and anxiety, were obtained from linked health-care records. Level of caring responsibilities and its impact on the individual's work were self-reported. We estimated associations between caring responsibilities and CMD using logistic regression adjusting for gender, age, and deprivation. HWW received ethics approval from Wales Research Ethics Committee (REC) 3 on March 16, 2015 (reference 15/WA/0076). All participants gave informed consent digitally as a pre-requisite for registration online. Findings The cohort included 3682 carers; 2791 (76%) were female, 2833 (77%) were aged 45 years or older, and 1900 (53%) lived in more deprived areas. The cohort of non-carers included 10 023 people; 7107 (71%) were female, 6030 (60%) were aged 45 years or older, and 4814 (49%) lived in more deprived areas. Of those identifying as carers, 1271 (35%) of 3607 with linked health records self-reported a CMD and 1331 (44%) of 3057 with linked health records had a diagnosis of a CMD versus 3029 (31%) and 2992 (36%) of non-carers, respectively. There was 80% agreement between self-report and recorded diagnosis of a CMD in health-care records. Compared with non-carers, carers were 1·3 times more likely to have an MHI5 score indicating current CMD (odds ratio [OR] 1·28, 95% CI 1·17–1·40; p<0·0001). Participants who had previously given up work to provide care were also more likely to have an MHI5 score indicative of a CMD (1·67, 1·47–1·88; p<0·0001). Being a carer was further linked to the likelihood of self-reported diagnosis of a CMD (1·21, 1·11–1·32; p<0·0001) and of diagnosis of a CMD from health-care records (1·32, 1·21–1·44; p<0·0001), even after adjusting for sociodemographic factors. Interpretation This study suggests that caring is linked to poor mental health, emphasising the potential burden of caring responsibilities on the carers’ mental health across the population. While acknowledging the cross-sectional nature of these data, these findings highlight the need to develop and test interventions that can support informal carers to protect their mental health. Funding Health and Care Research Wales.

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Caregiving time costs and trade-offs: Gender differences in Sweden, the UK, and Canada

Population ageing is putting pressure on pension systems and health care services, creating an imperative to extend working lives. At the same time, policy makers throughout Europe and North America are trying to expand the use of home care over institutional services. Thus, the number of people combining caregiving responsibilities with paid work is growing. We investigate the conflicts that arise from this by exploring the time costs of unpaid care and how caregiving time is traded off against time in paid work and leisure in three distinct policy contexts. We analyze how these tradeoffs differ for men and women (age 50-74), using time diary data from Sweden, the UK and Canada from 2000 to 2015. Results show that women provide more unpaid care in each country, but the impact of unpaid care on labor supply is similar for male and female caregivers. Caregivers in the UK and Canada, particularly those involved in intensive caregiving, reduce paid work in order to provide unpaid care. Caregivers in Sweden do not trade off time in paid work with time in caregiving, but they have less leisure time. Our findings support the idea that the more extensive social infrastructure for caring in Sweden may diminish the labor market effects of unpaid care, but highlight that throughout contexts, intensive caregivers make important labor and leisure tradeoffs. Respite care and financial support policies are important for caregivers who are decreasing labor and leisure time to provide unpaid care.

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Non-spouse companions accompanying older adults to medical visits: a qualitative analysis

Background Medical Visit Companions (MVCs) are encouraged for older adults' routine medical encounters. Little data exist on the experiences and contributions of non-spouse companions for the growing population of older adults without a living spouse. Methods We conducted six focus groups with forty non-spouse MVCs identified through churches in Baltimore, Maryland. Thematic analysis was used to identify key issues before the visit, during the visit itself, after the visit, and in the overall companion experience. Results MVCs described their experiences positively but also highlighted many challenges related to the role that extended far beyond the visit itself. These included scheduling, transportation, communication, and coordination of care expectations. Conclusion Our increasingly complex healthcare system can be challenging for older adults to navigate successfully. The diverse nature of tasks performed by companions in this study highlight the many benefits of having a companion accompany older patients to medical visits. The positive experience of the companions studied and their willingness to continue their role in the future highlights the untapped potential for increased social facilitation to improve the quality of healthcare visits and achieve patient-centered care for all older patients.

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Contextual factors influencing medication management by rural informal caregivers of older adults

Background: Managing medications is an important part of the rural informal caregiver's role in the community setting, and the context within which care is provided plays an important role in shaping the work they perform. However, little is known about the intra- and interpersonal factors that impact the rural caregiver's involvement in and performance of medication management. Objectives: To identify contextual factors influencing medication management by rural informal caregivers of older adults. Methods: Four separate focus groups with rural caregivers of older adults were conducted with 5-9 caregivers per group. Participants were asked to describe the medication management activities performed and problems they encountered while providing assistance. Focus groups were recorded, transcribed verbatim, and analyzed for themes using an inductive approach. Results: Care recipient independence, or their ability and preference to perform medication-related activities without supervision, was a key factor driving the caregiver's involvement in medication management and how it was performed. Many caregivers used a team-based approach to medication management that supported the care recipient's independence. Care recipient health and function was a driver behind the need for caregiving, and declines in physical and mental health led to changes in how medication management was carried out over time. Caregiver location also impacted the ways in which medication management was performed by caregivers. Conclusions: Interventions and pharmacy services to support medication management by rural informal caregivers should be designed in a way that preserves and promotes the care recipient's independence, and should be tailored to the context within which caregiving is performed.

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Family Caregiver Factors Associated With Emergency Department Utilization Among Community-Living Older Adults With Disabilities

Background: Older adults with disability are frequent users of the emergency department (ED) and often rely on family caregiver support. We identify whether and which caregiver characteristics are associated with older adults' ED use. Methods: We use Cox proportional hazards regression to model the likelihood of all-cause ED use (defined as 1 or more visits within 12 months of survey) as a function of caregiver characteristics after adjusting for older adult sociodemographic and health characteristics. We draw from linked older adult and caregiver surveys and administrative claims, creating a sample of 2521 community-living older adults with mobility/self-care disability receiving care from a family or unpaid caregiver. Results: About half (52.5%) of older adults receiving mobility or self-care help incurred 1 or more ED visits within 12 months of interview. Adjusting for year of data collection, sociodemographic characteristics, and health status, these older adults were at greater risk of all-cause ED use if their primary caregiver provided greater than 40 hours of care per week (hazard ratio [HR] 1.22, 95% CI 1.04-1.43; P = .02), helped with health care tasks (HR 1.26; 95% CI 1.08-1.46; P < .01), or experienced physical strain (HR 1.18; 95% CI 1.03-1.36; P = .02). Conclusion: Caregiver strain, helping with health care tasks, and greater hours of help per week are associated with heightened risk of ED use among older adults receiving mobility or self-care help. Study findings suggest the potential benefit of caregiver assessment and support.

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Older Adult Factors Associated With Identified Need for Family Caregiver Assistance During Home Health Care

Family caregivers make important contributions to home health care for older adults, but knowledge of the specific roles they assume is lacking. We analyzed data from 1,758 community-dwelling Medicare beneficiaries aged 65+ receiving Medicare-funded home health care between 2011 and 2016, using linked National Health and Aging Trends Study and Outcomes and Assessment Information Set data. Most (86.7%) beneficiaries receiving home health care had an identified need for family caregiver assistance, and nearly 6 in 10 (57.9%) had identified need for caregiver assistance with five or more tasks. After examining significant associations between older adult characteristics and identified needs for caregiver assistance with specific tasks, we identified three profiles of older adults who demonstrate similar patterns of identified need for family caregiver assistance during home health. These profiles include: (1) older adults with greater functional impairment who more often had identified need for assistance with Instrumental Activities of Daily Living, advocacy, or Activities of Daily Living; (2) older adults with cognitive impairment who more often had identified need for assistance with medication administration or supervision; and (3) older adults with greater clinical severity who more often had identified need for assistance with medical procedures and equipment. Findings support calls to develop training interventions and strengthen the partnership between home health providers and family caregivers. These three profiles present a potential framework for the development of family caregiver training programs.

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Policy Brief on Ageing No. 22: The challenging roles of informal carers

The number of older people with care or support needs is on the rise across the UNECE region. While there are efforts to expand formal long-term care services to respond to this growing demand, informal care forms the backbone of long-term care (LTC) provision across the UNECE region. There is diversity in the way long-term care provision is organised and financed across the region as well as with regard to the status, recognition and support provided to informal carers. Although informal carers cover an estimated 70 to 95 per cent of all care needs,  they are often called the ‘invisible workforce’ in long-term care systems as they are rarely registered or counted and their status as informal care provider is often not formally recognized. The majority of informal care is provided by women.

By covering for the gaps in both short-term and long-term formal care provision, thus “co-producing” care services alongside professional service providers, informal carers help prevent or delay the need for institutionalization of people in need of care or support and are enabling them to remain living at home. 

It is challenging for informal carers to cover short-term care needs for a family member, neighbour or friend. It becomes even more demanding the longer this activity has to be performed, especially when informal carers might themselves be of advanced age and care recipients themselves. Policy measures are needed to address the growing need for care in a way that prevents strain on families and caregivers and protects their health and well-being. Public policies need to ensure that informal carers will not be forced to reduce or give up paid employment, face social exclusion and ultimately be caught in a poverty trap.

This policy brief focuses on informal carers who provide long-term informal care to older persons. It addresses the policy challenge to support informal carers in a multifaceted way, identifying key challenges faced by informal carers and policy strategies to address them. 

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Community and caregiver perceptions of giving care to seniors

Background: Family caregivers of seniors and disabled adults frequently bear the responsibility of aiding in instrumental activities of daily living and locating resources, often while raising their own families. As the demand for care rises, caregivers may experience declining physical health and increased social and emotional stress compared to their noncaregiving counterparts. This study aims to better understand the journey of unpaid family caregivers and identify opportunities for improvement across organizations, policies, systems, and teams. Research design and methods: A purposive sample of 28 current and former unpaid caregivers of seniors or people with disabilities (26 females and 2 males) participated in four separate focus groups. Recordings were transcribed verbatim and analyzed using open coding. Results: Six major themes surrounding the experience of caregiving emerged from the coding process: Ambivalence, “Boiling Point,” Coping, Acknowledgment and Acceptance, Family Dynamics, and Interaction with the System. Focus groups indicated an urgent need to identify and support unpaid caregivers earlier in their trajectory of caring for a senior and to provide consistent, right-time resources over the trajectory of the senior’s lifespan. Discussion and implications: The rational, emotional, and relational components of caregiving represent distinct but overlapping themes within the experience of giving care. Each theme influences another, creating an experience that is complex, fluid, and sensitive to change. The system surrounding caregivers must proactively identify caregivers as equal members of the care team for a senior or disabled adult early in the patient’s disease trajectory.

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Caring for Aging Populations: Examining Compassion Fatigue and Satisfaction

Stamm’s Professional Quality of Life Scale (ProQOL) was utilized to examine compassion fatigue and compassion satisfaction among three types of caregivers: formal (employed in a caregiver role), adult child (caring for an aging parent), and spouse/partner (caring for significant other). Data were collected from a sample of 87 adults who were currently (for 6 months or longer) providing care to an individual 65 years of age or older. The results revealed that formal caregivers had significantly higher compassion satisfaction scores compared to both adult child and spouse/partner caregivers. Additionally, results indicated that formal caregivers had significantly lower compassion fatigue scores than adult child caregivers. Although limited by the homogeneities in the sample of convenience, this study suggests that family caregivers could benefit from additional support in providing care. Furthermore, research should be conducted to examine factors that contribute to formal caregivers’ increased satisfaction and decreased fatigue in an effort to inform family caregivers. 

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Exploring caregivers' perspectives on improving care for older people at the end of life in Thailand

Background: Older people in Thailand receive general medical and social care at the end of life, and many rarely access palliative services. In light of this, improving the quality of care for the ageing population relies on addressing the needs of family caregivers, who provide the majority of care in a home setting. Understanding caregivers' perspectives when caring for a friend or relative will help to improve the quality of care that they provide. Aim: To explore caregivers' perspectives on improving care for older people in Thailand in the palliative stage. Methods: A qualitative study using in-depth interviews and observation of 10 older people in the palliative stage and their caregivers was undertaken. Data were analysed using content analysis. Findings: Data analysis revealed three themes: caregivers cared to repay the older person's previous kindness, caregivers cared and changed their caregiving behaviour to minimise the older person's perception of being abandoned or being a burden, and to follow Thai ancestral traditions, so that the older person could die peacefully. Conclusion: This study provides specific instructions for those who provide care for older Thai people in the palliative stage. Finding ways to address caregivers' perspectives on improving care quality could enhance the experience of care recipients.

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Multi-part quality evaluation of a customized mobile application for monitoring elderly patients with functional loss and helping caregivers

Background: The challenges faced by caregivers of the elderly with chronic diseases are always complex. In this context, mobile technologies have been used with promising results, but often have restricted functionality, or are either difficult to use or do not provide the necessary support to the caregiver - which leads to declining usage over time. Therefore, we developed the Mobile System for Elderly Monitoring, SMAI. The purpose of SMAI is to monitor patients with functional loss and to improve the support to caregivers' communication with the health team professionals, informing them the data related to the patients' daily lives, while providing the health team better tools. Method: SMAI is composed of mobile applications developed for the caregivers and health team, and a web portal that supports management activities. Caregivers use an Android application to send information and receive care advice and feedback from the health team. The system was constructed using a refinement stage approach. Each stage involved caregivers and the health team in prototype release-test-assessment-refinement cycles. SMAI was evaluated during 18 months. We studied which features were being used the most, and their use pattern throughout the week. We also studied the users' qualitative perceptions. Finally, the caregiver application was also evaluated for usability. Results: SMAI functionalities showed to be very useful or useful to caregivers and health professionals. The Focus Group interviews reveled that among caregivers the use of the application gave them the sensation of being connected to the health team. The usability evaluation identified that the interface design and associated tasks were easy to use and the System Usability Scale, SUS, presented very good results. Conclusions: In general, the use of SMAI represented a positive change for the family caregivers and for the NAI health team. The overall qualitative results indicate that the approach used to construct the system was appropriate to achieve the objectives. 

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Caregiver Interventions for Adults Discharged from the Hospital: Systematic Review and Meta-Analysis

OBJECTIVES: To review the evidence evaluating the effectiveness of informal caregiver interventions to facilitate the recovery of older people discharged from the hospital. DESIGN: Systematic review and meta-analysis. SETTING: Hospital and community. METHODS: Published and unpublished randomized and nonrandomized controlled trials assessing the effectiveness of informal caregiver interventions to support the recovery of older people discharged from the hospital were identified (to March 2019). The primary outcome was patient health-related quality of life (HRQOL). Secondary outcomes included patient function, caregiver burden, caregiver HRQOL, psychological distress, adverse events, and health resource use. Studies were critically appraised and meta-analyzed. PARTICIPANTS: Adults who had been admitted to the hospital. RESULTS: A total of 23 studies were eligible (4695 participants). The indication for hospital admission was stroke in 21 trials (91%). Interventions consisted of training and/or skills-based programs, with or without home visits/telephone follow-up. Caregiver interventions for patients following stroke may provide no benefit for patient HRQOL at 12 months (standardized mean difference =.29; 95% confidence interval = -.12 to.69; low-quality evidence). Caregiver interventions demonstrated benefit for caregiver burden and both patient and caregiver anxiety at 12 months. No consistent effect was found on functional outcomes, depression, HRQOL, adverse events, or health resource use measures. CONCLUSIONS: Informal caregivers who receive training to facilitate the recovery of older people discharged from the hospital following stroke may have a lower burden and reduced anxiety at 12 months compared with those who do not. However, the evidence was moderate to low quality. Further study is warranted to explore whether caregiver interventions can be modified for nonstroke populations such as those with hip fracture. 

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Progress and Policy Opportunities in Family Caregiver Assessment: Results From a National Survey

Family caregivers play an essential role in long-term services and supports (LTSS). Despite numerous calls for robust caregiver assessment policies to determine needs and treat them as partners in care planning, there has been limited information about whether or how states assess caregiver needs and strengths, or use caregiver information. Using cross-sectional survey data from the 2015 Process Evaluation of the Older Americans Act National Family Caregiver Support Program (NFCSP), this study analyzes caregiver assessment policies and practices in 54 State Units on Aging, 619 Area Agencies on Aging, and 642 local service providers. It examines whether and for what purposes caregiver assessments are used, what domains are included, and how well current policies conform to recommended practice. It also recommends that policy makers who influence NFCSP and other LTSS programs develop caregiver assessment practices using a multidimensional framework including more caregiver-focused domains and utilizing assessment data to measure program outcomes. 

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The impact of the absorbent products distribution system on family caregivers of older people with incontinence in Italy: Perception of the support received

Background: Urinary incontinence is a chronic, age-related disorder, likely to increase in the future due to global population ageing. In Italy, as in most countries, older people with incontinence are often cared for by family caregivers, whose burden might be worsened by the perception of receiving an inadequate support, due to the lack of customized services. The aim of this study was to evaluate the impact of the absorbent products distribution method on family caregivers' perception of the support received. Methods: The study compared the distribution of pads to homes and in pharmacy via a survey reaching 101 family caregivers of older people with incontinence living in two geographical areas of the Marche Region (Central Italy) with different distribution systems. The association between "Quality of perceived support" (the outcome variable) and two types of absorbent products delivery methods (i.e. pharmacy and home distribution) was analysed by means of a general linear model. Results: Findings show that family caregivers receiving pads at home (HODs) perceived a higher support than those gaining them at the pharmacy (PHADs) (respectively 68.1% vs 35%). The association between perceived support level and distribution system remained even after correction for confounding factors. 70.2% of PHADs reported "Poor well-being", versus only 53.7% of HODs. The latter are more satisfied with the type of products distribution and thus less inclined to experiment different systems for the supply of products for the urinary continence (e.g. by voucher). The results are virtually reversed among PHADs and the difference is statistically significant (p < 0.001). Conclusions: When family caregivers feel supported by a more customized service delivery system, their perception of the care-related burden is mitigated. Thus, it is important to consider the needs of both family caregivers and cared for older people, and not only of the latter for designing a more suitable distribution of absorbent products. The best solution could be leaving end-users the freedom to choose how they want to get products (e.g. voucher or personal budget). This requires a reorganization of the current pads delivery systems adopted by the Marche and by other Italian Regional Health Systems. 

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Redesigning care for older people to preserve physical and mental capacity: WHO guidelines on community-level interventions in integrated care

Islene Araujo de Carvalho and coauthors discuss the WHO guidelines on integrated care for older people.

Summary points:

  • Numerous underlying physiological changes occur with increasing age, and for older people, the risks of developing chronic diseases and care dependency increase.
  • Health systems are often better designed to respond to episodic health needs than to the more complex and chronic health needs that tend to arise with increasing age, and reprioritization is required to meet the needs of ageing populations.
  • Significant losses in capacity and care dependency in later life can be delayed or avoided if health interventions are introduced earlier in the process of functional decline.
  • We discuss the recommendations of the WHO Integrated Care for Older People (ICOPE) Guidelines, which provide evidence-based recommendations for managing declines in intrinsic capacity, developed with the Grading of Recommendations Assessment, Development and Evaluation (GRADE) methodology.
  • Implementation of evidence-based interventions requires community-based assessment of an individual’s needs, development and implementation of a care plan, provision of monitoring and referrals as needed, and supporting caregivers.
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The design and methodology of a usability protocol for the management of medications by families for aging older adults

BACKGROUND: Health research apps often do not focus on usability as a design priority. This is problematic when the population of interest is disproportionately underrepresented as users of mobile apps, especially observed with aging older adults (> = 75). Challenges with the adoption of health information technology (HIT) among this group are exacerbated by poor design and user interface/experience (UI/UX) choices. This protocol describes the testing and evaluation process of one HIT app for the family-based collaboration platform InfoSAGE. METHODS: We aim to recruit twenty subjects from both informal family-caregivers and aging older adults to examine the usability of the InfoSAGE mobile medication manager. Participants will be audio and visually recorded, in addition to the use of screen capture recordings, while 'thinking aloud' as they complete eight common use-case scenarios. Multiple independent reviewers will code video and audio recordings for thematic analysis and use problems will be evaluated. Success and failure of each scenario will be determined by completion of sub-events. Time-to-complete analysis will be used to ascertain the learning curve associated with the app. DISCUSSION: Frequently observed problem areas will be used as the basis of further evolution of the app, and will further inform generalized recommendations for the design of HIT apps for research and public use. This study aims to improve the model of development for dual user populations with dissimilar technological literacy to improve retention and use. Results of this study will form the foundation of a design framework for mobile health apps.

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The caregiving dyad: Do caregivers’ appraisals of caregiving matter for care recipients’ health?

Caregiving experiences matter for caregivers’ own wellbeing, but few studies link caregivers’ burden and benefit perceptions with recipient outcomes. Following the stress process model, I prospectively explore how caregivers’ experiences shape recipients’ mental health. I match US National Health and Aging Trends Study and National Study of Caregivers, employing logistic regression on 781 older adult-informal caregiver dyads. I examine how caregivers’ appraisals shape recipients’ subsequent depression and anxiety, with caregiver mental health and recipient unmet care need as key covariates. Recipients receiving care from caregivers reporting predominantly benefits are less likely to become depressed than counterparts receiving care from persons reporting predominantly burden. Recipients receiving care from persons reporting benefits even alongside low or moderate burden are also less likely to become anxious. Recipient unmet care need, but not caregiver mental health, is associated with recipient mental health. Improving caregiver conditions may have benefits for both dyad members. 

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Coping and anxiety in caregivers of dependent older adult relatives

The aim of this study was to analyze the relationship between coping and anxiety in caregivers of dependent older adult relatives. A cross-sectional study was carried out in the province of Jaén (Andalusia, Spain). The convenience sample consisted of 198 family caregivers of dependent older adults. The main measurements were anxiety (Hamilton scale), coping (Brief COPE), subjective burden (Caregiver Strain Index), objective burden and sex of the caregiver. The main analyses were bivariate analysis using the Pearson correlation coefficient, and multivariate analysis using multiple linear regression. An independent regression model was developed for anxiety and each type of coping, adjusting for sex, subjective burden and objective burden. Our results demonstrate that anxiety was negatively associated with planning (partial r = -0.18), acceptance (partial r = -0.22) and humor (partial r = -0.20), and it was positively associated with self-distraction (partial r = 0.19), venting (partial r = 0.22), denial (partial r = 0.27) and self-blame (partial r = 0.25). Planning, acceptance and humor coping strategies may be protective factors of anxiety. Strategies such self-management, relief, denial and self-blame may be risk factors for anxiety.

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Comparing Assessments of Physical Functional Independence in Older Adults with Mobility Limitations

Objectives The aims of the study were (1) to assess the agreement and correlation between self-reported functional independence and observations of family caregivers in a heterogeneous population of community-dwelling older adults with disabilities and (2) to determine how self-reports and caregiver reports correlate with evaluator rated functional independence over time. Design Data were drawn from a larger, randomized controlled trial examining the effects of a caregiver-inclusive intervention on outcomes of care recipients and their family caregivers. Functional independence measures were obtained using a self-report version of the Functional Independence Measure (care recipient self-reported Functional Independence Measure, caregiver self-reported Functional Independence Measure) and the Functional Autonomy Measurement System (evaluator perspective). They were administered at baseline (preintervention) and after the intervention at 6, 22, and 58 wks. Results Bivariate correlation analyses of 90 dyads consisting of older care recipients and their family caregivers reported moderate to very strong correlations between the three functional independence measures across all time points (rS = 0.45-0.91, P &lt; 0.01). Bland-Altman analyses revealed a small systematic bias between care recipient and caregiver assessments of functional independence, with participants reporting higher scores across all time points (mean difference = 2.00-2.97). Conclusions There is substantial consistency among the self-assessed, caregiver-assessed, and evaluator assessed functional independence of older adults. Caregivers may be used as proxies for community-dwelling older adults without severe cognitive impairments with functional limitations. 

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Needs-focused interventions for family caregivers of older adults with cancer: a descriptive interpretive study

Purpose: Although family caregivers (FCs) of older adults with cancer (OACs) provide invaluable assistance by fulfilling multiple tasks along the cancer trajectory, evidence suggests that their needs are poorly assessed, and there is a scarcity of supportive interventions that influence their well-being. Viewing these issues as opportunities for improvement, we conducted this qualitative study to understand FCs’ needs and identify promising needs-focused interventions. Methods: This descriptive interpretive qualitative study was conducted in Quebec, Canada, in a French Canadian Oncology Clinic. Participants were FCs who were spouses or adult children (n = 25) of OACs aged 70 years or older. Data were collected via focus groups and were analyzed using an ongoing analytic process following each interview. Results: Three types of needs were of particular importance: information, relationships between FC and others, and care for oneself. The need for information was described in terms of the content, timeliness, and modalities in which information should be verbalized and delivered. The need for relationships specifically targeted health care providers (HCPs), family members, and OACs. The need to care for oneself was recognized as important throughout the cancer trajectory but also represented a challenge. Participants proposed innovative ideas for interventions, resources, and strategies for each type of need. Conclusions: According to our results, HCPs should systematically include FCs into OACs’ care plan through the use of concrete actions such as the “family systems approach” suggested by Duhamel, and integrate a systematic FC’s needs assessment.

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Moving beyond the first response phenomenon: Exploring carers’ views and experiences of being involved in research and development work

Purpose: In Sweden, the care of older people and people with disabilities is increasingly carried out by informal carers, often family members, who are unpaid and outside a professional or formal framework. While there is an increasing awareness of the role of carers within service systems and their own needs for support, their involvement in research is underexplored. The purpose of this paper is to explore carers’ views and experiences of involvement in research and development (R&D) work. Design/methodology/approach: A qualitative study was conducted, consisting of 12 individual interviews with carers from different local Swedish carer organizations. Findings: Core findings included carers’ discussions of the perceived challenges and benefits of their involvement in research, both generally and more specifically, in the context of their involvement in the development of a national carer strategy. Research limitations/implications: Limitations included the relative lack of male carer participants and the convenience sample. Practical implications: Authentic carer involvement in research demands a high level of engagement from researchers during the entire research process. The provided CRAC framework, with reference to the themes community, reciprocity, advocacy and circumstantiality, may help researchers to understand and interpret carer involvement in research and provide the prerequisites for their involvement. Originality/value: There is a dearth of studies that systematically examine carer involvement in research. This paper attempts to redress this gap by providing a nuanced analysis of carer involvement in R&D work from the perspective of carers themselves.

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The effectiveness of a life story program on stress reduction among Chinese American family caregivers of older adults

The study aims to examine the effectiveness of a life story program on reducing Chinese American family caregivers’ stress due to the burden of caregiving. This study conducted a quasi-experimental pre-posttest research design. A simple one-way ANOVA was performed to test the significance of the intervention on caregivers’ burden. The life story was not found to be directly statistically significant on reducing burden. However, through the life story intervention, it was discovered that among Chinese American family caregivers their perceived lower dependency of the care receiver, fewer needs of the care receiver and unknown time frame of continuation of care were statistically significant on the burden scale. The life story intervention improved family caregivers’ insight and judgment on the effect that care receivers’ needs and demands had on their continuation of caregiving. 

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Building Better Caregivers: A Pragmatic 12-Month Trial of a Community-Based Workshop for Caregivers of Cognitively Impaired Adults

Building Better Caregivers (BBC), a community 6-week, peer-led intervention, targets family caregivers of those with cognitive impairments. BBC was implemented in four geographically scattered areas. Self-report data were collected at baseline, 6 months, and 1 year. Primary outcome were caregiver strain and depression. Secondary outcomes included caregiver burden, stress, fatigue, pain, sleep, self-rated health, exercise, self-efficacy, and caregiver and care partner health care utilization. Paired t tests examined 6 month and 1-year improvements. General linear models examined associations between baseline and 6-month changes in self-efficacy and 12-month primary outcomes. Eighty-three participants (75% of eligible) completed 12-month data. Caregiver strain and depression improved significantly (Effect Sizes =.30 and.41). All secondary outcomes except exercise and caregiver health care utilization improved significantly. Baseline and 6-month improvements in self-efficacy were associated with improvements in caregiver strain and depression. In this pilot pragmatic study, BBC appears to assist caregivers while reducing care partner health care utilization. Self-efficacy appears to moderate these outcomes. 

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Recruitment of caregivers into health services research: Lessons from a user-centred design study

Background: With patient and public engagement in many aspects of the healthcare system becoming an imperative, the recruitment of patients and members of the public into service and research roles has emerged as a challenge. The existing literature carries few reports of the methods – successful and unsuccessful – that researchers engaged in user-centred design (UCD) projects are using to recruit participants as equal partners in co-design research. This paper uses the recruitment experiences of a specific UCD project to provide a road map for other investigators, and to make general recommendations for funding agencies interested in supporting co-design research. Methods: We used a case study methodology and employed Nominal Group Technique (NGT) and Focus Group discussions to collect data. We recruited 25 family caregivers. Results: Employing various strategies to recruit unpaid family caregivers in a UCD project aimed at co-designing an assistive technology for family caregivers, we found that recruitment through caregiver agencies is the most efficient (least costly) and effective mechanism. The nature of this recruitment work – thetimeandcompromises it requires – has, we believe, implications for funding agencies who need to understand that working with caregivers agencies, requires a considerable amount of time for building relationships, aligning values, and establishing trust. Conclusions: In addition to providing adaptable strategies, the paper contributes to discussions surrounding how projects seeking effective, meaningful, and ethical patient and public engagement are planned and funded. We call for more evidence to explore effective mechanisms to recruit family caregivers into qualitative research. We also call for reports of successful strategies that other researchers have employed to recruit and retain family caregivers in their research.

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Methods for involving people living with dementia and their informal carers as co-developers of technological solutions

This paper reports on the research methods used in five different projects aimed at supporting people living with dementia in their everyday lives and activities of daily living. In all five projects, people living with dementia and their informal carers were involved. Applied methods ranged from passive involvement in the form of observations to very active involvement consisting of consultation rounds and think-aloud sessions. The projects highlighted that people living with dementia can still contribute to the development of solutions that support them in the self-management of their symptoms and challenges, as well as technological solutions that support them in daily living. 

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Insights into the system of care of the elderly with mental disorders from the perspective of informal caregivers in Lithuania

Background: Changes in the demographics and respective growth of life expectancy and social needs make informal caregiving crucial component of comprehensive health and social care network, which substantially contributes to the health and well-being of the elderly. The purpose of this paper is to understand the system of care of elderly patients with mental disorders from the perspective of informal caregivers in Lithuania. Methods: We conducted five semi-structured focus group discussions with 31 informal caregivers attending to elderly patients with mental disorders. The data were audiotaped and transcribed verbatim. A thematic analysis was subsequently performed. Results: Five thematic categories were established: (1) the current state of care-receivers: Representation of the complexity of patients' physical and mental condition. (2) The current state of caregivers: Lack of formal caregivers' integration as a team; inadequate formal involvement of informal caregivers. (3) Basic care needs: The reflection of the group needs relating directly to the patient, care organisation and the caretaker. (4) The (non-) Readiness of the existing system to respond to the needs for care: Long-term care reliance on institutional services, lack of distinction between acute/immediate care and nursing, lack of integration between the medical sector and the social care sector. (5) Potential trends for further improvement of long-term care for the elderly with mental disorders. Conclusions: Strengthening of the care network for elderly patients with mental disorders should cover more than a personalised and comprehensive assessment of the needs of patients and their caregivers. Comprehensive approaches, such as formalization of informal caregivers' role in the patient care management and planning, a more extensive range of available services and programs supported by diverse sources of funding, systemic developments and better integration of health and social care systems are essential for making the system of care more balanced. 

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Implementation of a Psychosocial Intervention Program for Working Caregivers

The overall aim of this pilot study was to examine the feasibility and acceptability of a multicomponent, psychosocial intervention specifically designed to meet the unique needs of caregivers who are balancing caregiving duties with work responsibilities. Seventy-one family caregivers employed at a private, nonprofit institution in South Florida were randomized to either the Caregiver Workstation condition (n = 35) or a control condition (n = 36). Sixty-two caregivers completed the 5-month follow-up. Our results indicate that an intervention tailored to the time demands of a working caregiver is feasible, acceptable to caregivers, and has the potential to have positive long-term effects. Currently, there are limited data available regarding the benefits of employer programs for caregivers or the type of programs caregivers find most useful. This pilot study is the first step in developing a working caregiver intervention program that can be implemented on a broad-scale basis.

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Assessing Programs, Methods, and Policies to Engage and Empower Family Caregivers

This issue of Journal of Applied Gerontology includes an impressive collection of articles that highlight interventions, assess moderators, explore methodological approaches and emphasize the value of caregiver assessments, all within the context of supporting and empowering family caregivers. Recognition is growing of the sheer magnitude of caregivers (AARP Public Policy Institute estimates over 45 million) and the impact, both beneficial and challenging, of fulfilling this role. Several of these articles demonstrate that interventions designed to address caregivers’ varying needs, while remaining adaptable in their approaches, are likely to yield more positive participant outcomes. Each of these articles focuses on the caregivers’ needs while validating their caregiving experiences.

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Educating the next generation of family caregivers through the use of dynamic case studies

Between 2008 and 2016, students in an Introduction to Gerontology course were required to complete a dynamic case study project simulating caregiving arrangement decision making. Students were divided into groups representing typical multigenerational families and were required to determine how to develop caregiving arrangements to respond to an older family member’ s changing levels of need. The assignment concluded with students writing a final paper summarizing what they learned. This study examined the themes emerging from student group case study papers to gain an understanding of the challenges students face in understanding the dynamics of making family-based caregiving decisions. This is of particular importance as many students were seeking careers in human services and would be assisting clients in such decision-making processes, as well as involvement in decision making for their own family members. Themes that emerged from group papers and the implications related to gerontology education and policy are discussed. 

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Projecting future demand for informal care among older people in China : the road towards a sustainable long-term care system

The long-term care system in China relies heavily on informal care provided by family members. This study makes projections on the demand for informal care among Chinese older people between 2015 and 2035 and quantifies the level of long-term care resources needed to meet their needs. The data come from longitudinal information in a nationally representative sample, China Health and Retirement Longitudinal Survey 2011 and 2013. The macrosimulation approach (PSSRU model) and the Markov approach are integrated into one Bayesian modelling framework. The Monte Carlo simulation technique is used to capture parameter uncertainty. We project that the demand for informal care will increase from 41.3 million people (95 per cent CI: 39.9-42.7) in 2015 to 82.6 million people (95 per cent CI: 78.3-86.9) in 2035. The long-term care system faces unbalanced pressure of demand for informal care from different groups of older people. The projected demand is sensitive to changes in older people's disability trajectory and the availability of formal care provided by the government, but less sensitive to an increase in singleton households in the future. We discuss possible policy measures to alleviate the mounting pressure on the demand for informal care. 

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The dynamics of social care and employment in mid-life

This study investigates the relationship between the provision of informal care to older parents/parents-in-law and the employment status of adult children in mid-life. The study analyses unique panel data for a cohort of individuals born in 1958 in Britain, focusing on respondents at risk of providing care (i.e. with at least one surviving parent/parent-in-law) and in employment at 50. Logistic regression is used to investigate the impact of caring at 50 and 55 on employment status at 55, controlling for socio-demographic characteristics, the respondent's health status and their partner's employment status. Separate models examine (a) the likelihood of exiting the labour force versus continuing work, and (b) amongst those continuing in work, the likelihood of reducing hours of employment. Different types of care (personal, basic and instrumental support) are distinguished, along with hours of caring. The results highlight that providing care for more personal tasks, and for a higher number of hours, are associated with exiting employment for both men and women carers. In contrast, the negative impact of more intense care-giving on reducing working hours was significant only for men - suggesting that women may juggle intensive care commitments alongside work or leave work altogether. Facilitating women and men to combine paid work and parental care in mid-life will be increasingly important in the context of rising longevity. 

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Co-construction of an Internet-based intervention for older assistive technology users and their family caregivers: stakeholders’ perceptions

Purpose: Providing care to older adults using assistive technology can be challenging for family caregivers. To inform the development of an Internet-based intervention, this study aimed to identify older assistive technology users and family caregivers’ needs related to assistive technology procurement, and to explore how to offer remote support through an Internet-based intervention. Methods: Based on an iterative user-centered design approach, 30 semi-structured interviews were conducted with stakeholders about their experiences with assistive technology procurement/attribution and their perceptions of a proposed intervention. A modified content analysis approach was used, with a mix of emerging and a priori concepts. Results: Participants view assistive technology procurement as an ongoing cyclical process, with potential unmet needs at key moments before and after assistive technology procurement. Assistive technology user-family caregiver dyads needs focus on assistive technology information, access, assistive technology-person-context match, training and support. While participants felt there were benefits to the proposed intervention they also identified potential implementation barriers. Conclusion: Assistive technology Internet-based interventions dedicated to family caregivers should ensure systematic and tailored follow-up while integrating some form of human support. This study guides the prototype design of the proposed intervention towards a graded support approach, empowering assistive technology users and family caregivers to resolve assistive technology-related challenges. Implication for rehabilitation Providing home-based care to older adults using assistive technology (e.g., mobility aids, communication aids) can be challenging for family caregivers. Using a user-centered design approach, an Internet-based intervention is under development to support older assistive technology users and their family caregivers. Through interviews with diverse stakeholders, this study explores unmet needs related to assistive technology procurement and perceptions about the proposed intervention. 

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Assessing mechanisms of benefit in adult day programs: the adult day services process and use measures

Objectives: A limitation of adult day service (ADS) research is that there remains little understanding of how these community-based long-term care programs operate to benefit clients or family caregivers (i.e. the process of ADS use). The purpose of this study was to validate the ‘ADS Process and Use Measures’ (APUM) which were developed to assess such mechanisms. Method: Participant observation and semi-structured interviews in two ADS settings resulted in qualitative data to inform a conceptual model, subscales, and Likert-scale items. Three experts in ADS research reviewed the initial 129-item version of the APUM to establish content validity, and 27 family caregivers of current or prior ADS clients provided feedback on face validity of a subsequent 58-item version. Results: Principal components and confirmatory factor analyses on a sample of 269 family members of ADS clients recruited from 90 programs throughout the U.S. established a measure featuring 5 domains, 12 reliable subscales, and 49 items. Analysis of discriminant and convergent validity found that various subscales from four of the domains (Why ADS is Used, Events Prior to Use, Why ADS Does Not Work, and Pathways to Benefits) were significantly associated (p < 0.05) with family caregiver distress and ADS client quality of life variables. Conclusion: The ADS Process and Use Measures effectively assess mechanisms of program benefit and could help to enhance the overall quality of these critical community-based long-term care options for older persons and their families. 

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Global Convergence: Aging and Long-Term Care Policy Challenges in the Developing World

Aging around the world poses a global challenge in eldercare. This challenge is particularly felt in low- and middle-income countries (LMICs), where population aging outpaces the development of aged care policies and services. This Perspective highlights the phenomenon of global convergence in several unsettling trends and challenges shared across LMICs. These include the weakening of informal family care systems for the elderly, growing need for formal long-term care of the frail and disabled who can no longer be adequately supported by family members, and mounting pressures for policy responses to tackle these societal challenges. It is argued that policymakers should take a proactive stance. That is, when family care for the elderly falls short and family caregivers are increasingly under strain, the government should step in and step up support to fill in the gap by developing appropriate policies and a continuum of long-term care services that are accessible and affordable for the majority of older people in need. Three general principles are then suggested with regard to long-term care provision, financing, and quality assurance, which transcend national borders and can be used to guide long-term care policymaking across LMICs.

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Risk and protective factors associated with domestic abuse among older Chinese in the People's Republic of China

Objectives: To identify risk and protective factors associated with elder abuse among older Chinese with cognitive and physical impairment in the People's Republic of China (PRC). Methods: 1002 dyads of care recipients and family caregivers were interviewed. Results: The mutually reported rates were 9.7%, 0.8%, 33.2%, and 39.7% for psychological abuse, physical abuse, financial exploitation, and caregiver neglect respectively. Caregiver burden, care recipient neuropsychiatric symptoms, and cognitive impairments are prominent risk factors, while protective factors associated with multiple abuse subtypes include caregiver's use of emotion-focused and solution-focused coping, perception of familism, and premorbid relationship rewards. Distinct factors were observed for respective forms of abuse. Psychological abuse with family poverty; Caregiver neglect with caregiver's substance use and poor physical health; Financial exploitation with caregiver's neurotic personality, as well as care recipient's younger age, absence of chronic illness, and co-residence between the caregiver and care recipient. Discussion: Both similar and distinct factors were observed for different forms of abuse, potentially useful for designing prevention and intervention programs. 

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Coping strategies and psychological distress in family carers of frail older people: A longitudinal study

Background: Carers of dependent older people experience high levels of psychological distress. However, little is known about the effects of coping on carer distress over time. In this one year longitudinal study we investigated the relationship between distress, and coping strategies in a representative sample of family carers living in Spain. Methods: Primary carers of older people were recruited (N = 200). We used probability sampling and collected data via individual interviews from 2013 to 2015. Variables investigated included psychological distress, coping, and levels of objective and subjective burden. Panel data analysis was used to test a model of association of psychological distress, and coping strategies controlling for key confounders. Results: Acceptance and emotional support were the most frequently used strategies, whereas behavioural disengagement and humour were the least used. In the panel data regressions, positive reframing (B = -0.79, p < 0.001), self-distraction (B = -0.46, p = 0.034), substance use (B = 0.57, p < 0.001) and denial (B = 0.57, p = 0,049) were significantly related to psychological distress at one year follow-up. Limitations: Limitations include participant drop out and assessing substance use coping via a brief measure. Conclusions: Positive reframing and self-distraction were longitudinally associated with lower levels of carer psychological distress. Using denial and substance use coping increased distress long-term. Our results suggest that interventions that focus on positive reframing and assisting carers in decreasing dysfunctional coping may be useful therapeutic targets mitigating carer psychological morbidity. 

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Assistive robots for socialization in elderly people: results pertaining to the needs of the users

Background/aim: Technological solutions can support the elderly, improve their quality of life and reduce isolation and loneliness. The Euro-Japan ACCRA (Agile Co-Creation for Robots and Aging) project has the objective of building a reference co-creation methodology for the development of robotic solutions for ageing. The aim of this study is to provide a pilot qualitative analysis of the real needs of elderly people and their caregivers when exposed to conversational activities with robots and to identify priority needs that should be developed from end-user perspectives. Methods: A qualitative research design was adopted to define a pre-structured questionnaire that was administered to the elderly taking part in the piloting sessions. Three groups of end-users were included: subjects with an age ≥ 60 years, informal caregivers and formal caregivers. Results: The interviews were carried out in Italy and Japan. A total of 17 elderly and 36 caregivers were recruited. Common needs in the two sites were categorized into 3 groups: Communication; Emotion Detection and Safety. General robot acceptance level is good and perception is positive among participants in the pilot sites. Conclusion: A positive perception of the elderly on the application of a robotic solution was found and many are the needs that could be addressed by an appropriate and careful robotic development taking into account the real needs and capabilities of the involved subjects. 

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Give me a break: Design for communication among family caregivers and respite caregivers

This study focuses on solutions to issues that arise from gaps in communication between primary family caregivers of older adults and respite caregivers. We collected data through 18 semi-structured interviews with primary family and respite caregivers and qualitatively analyzed the interviews to extract common needs. Participants identified three main needs that our designs address: building trust through status updates, learning routines & care management, and accessing technology. Based on those needs, we designed a prototype of an application which connects primary family caregivers with respite caregivers and facilitates communication between the involved parties. This design can serve as a framework for future work designed to improve elder care in general, the well-being of caregivers, and the efectiveness of respite care. 

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Knowledge Gaps About End-of-Life Decision Making Among Mexican American Older Adults and Their Family Caregivers: An Integrative Review

Introduction: Mexican Americans (MAs) are the largest, fastest growing Latino subgroup in the United States, yet their use of hospice is limited. To better understand this disparity, the authors conducted an integrative review focused on MA caregiving families’ end-of-life (EOL) care decisions. Method: In this literature review, the authors content analyzed results and discussions of 22 research studies focused on EOL decisions, which sampled MA adults at least 50 years old and/or families. The authors used Whittemore and Knafl’s integrative review process, employing constructs from the Ethno-Cultural Gerontological Nursing Model. Results: Topics included attitudes toward hospice, life-sustaining treatment, advance care planning, EOL decision making, perceptions of a good death, and life-limiting illnesses. EOL research for MA caregiving families is meager, largely atheoretical, and rarely validated by subsequent studies. Discussion: Nursing research is needed to extend theory and policy in order to skillfully match EOL care with MA caregiving families’ needs.

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Development of a Brief Caregiver-centric Screening Tool to Identify Risk of Depression among Caregivers of Hospitalized Older Adults

Objectives: Caregivers of hospitalized older adults experience elevated levels of stress and are at risk of poor health outcomes. There is a lack of screening tools based on self-reported caregiver variables incorporating both protective and risk factors, for early identification of at-risk caregivers. This study reports the development of a caregiver-centric screening tool to identify risk of depression at admission and predicts 3-month risk of depression and quality of life amongst caregivers of older adults with an unplanned admission. Design, Setting and Participants: This prospective cohort study was conducted in the medical wards of a tertiary-care hospital from July 2015 to May 2017. We recruited family caregivers of patients aged 65 years and above who fulfilled the following criteria: a) unplanned admission, b) not residing in nursing homes; and c) requiring assistance in activities of daily living. Measurements: We examined 11 candidate caregiver variables (mastery, burden and nine demographic variables). Risk of depression (score ≥8 on Hospital Anxiety and Depression Scale (HADS-D) depression subscale) was the primary outcome, and was assessed during the index admission. Logistic regression models were used to identify risk factors and risk scores (weights). The total risk scores were then stratified into three risk levels. Predictive validity of the screening tool was assessed using 3-months post-discharge risk of depression and health-related quality of life (HRQoL). Results: The study included 274 caregiver-patient dyads. The mean (SD) age of the caregivers was 59 (10) years with 33.6% caregivers screening positive for risk of depression. The final model comprised three caregiver variables: mastery, burden and education. The total risk scores ranged from 0 to 6 and showed good discrimination (AUC:0.82, 95% CI: 0.77 to 0.87). Caregivers were classified into low-risk (0–1 points), intermediate-risk (2–4 points), and high-risk (5–6 points) groups, with corresponding rates of risk of depression (HADS-D≥8) of 10.7%, 44.6% and 73.3%, during admission. Relative risk rates of the intermediate- and high-risk group using the low-risk group as reference were 4.16 and 6.84 respectively. At 3-months post-discharge, the rates of caregivers at risk of depression or having poor HRQoL also increased corresponding to the three risk levels as per baseline, supporting the predictive validity of the tool. Conclusions/Implications: The caregiver-centric tool is a novel, practical, self-administered, relatively brief caregiver-centric instrument that can be used for rapid screening and stratification of caregivers at risk of depression. Uniquely, the tool comprised of assessment of protective factor (mastery) in addition to risk factors to provide a holistic assessment of the caregiver. It can be incorporated as part of older adults’ admission evaluation so that prompt intervention can be rendered to their at-risk caregivers. 

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Time to move? Factors associated with burden of care among informal caregivers of cognitively impaired older people facing housing decisions: Secondary analysis of a cluster randomized trial

Background: Making health-related decisions about loved ones with cognitive impairment may contribute to caregiver burden of care. We sought to explore factors associated with burden of care among informal caregivers who had made housing decisions on behalf of a cognitively impaired older person. Methods: We conducted a secondary analysis within a cluster randomized trial (cRT) conducted in 16 publicly-funded home care service points across the Province of Quebec. The cRT assessed the impact of training home care teams in interprofessional shared decision making (IP-SDM). We assessed burden of care with the Zarit Burden Interview (ZBI) scale. We adapted Pallett's framework to inform our data analysis. This framework posits that factors influencing burden of care among caregivers fall within four domains: (a) characteristics of the caregiver, (b) characteristics of the cognitively impaired older person, (c) characteristics of the relationship between the caregiver and the cognitively impaired older person, and (d) the caregiver's perception of their social support resources. We computed the ZBI score and performed multilevel linear regression modelling. Results: Among 296 caregivers included in the dataset, the mean ZBI score was 29.8 (SD = 17.5) out of 88. The typical participant was 62.6 years old (SD = 11.7), female (74.7%), and caring for a mother or father (61.2%). Using multivariate analysis, factors significantly associated with caregiver burden mapped onto: caregiver characteristics (caregivers with higher burden were female, experienced higher decision regret and decisional conflict, preferred that their loved one move into the caregiver's home, into a private nursing home or a mixed private-public nursing home, and had made the decision more recently); relationship characteristics (spouses and children experienced higher burden); and caregiver's perception of social support resources (caregivers who perceived that a joint decision making process had occurred had higher burden). Conclusion: In line with the proposed framework used, we found that caregiver characteristics, relationship characteristics and caregiver's perception of social support resources were associated with burden of care. Our results will help design interventions to prevent and/or reduce caregivers' burden of care. Trial registration: NCT02244359. Date of registration: September 18, 2014. 

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The hidden patient: chronic physical morbidity, psychological distress, and quality of life in caregivers of older adults

Aim Increasing demands for care provision to older adults require good physical and mental health among caregivers. Few studies have examined the health status and correlates of quality of life among caregivers of older adults. The present study therefore sought to examine the prevalence of chronic physical conditions, psychological distress, and correlates of physical and mental quality of life among caregivers of older adults (≥60 years) in Singapore. Methods Participants were 285 informal caregivers who were providing care to an older relative. Participants were recruited at the Institute of Mental Health, Singapore, and they completed self-report measures on chronic physical morbidity, psychological distress, and physical and mental quality of life. Multiple regression models were constructed to examine correlates of physical and mental quality of life. Results More than half of the caregivers had at least one chronic physical condition (58.6%) and psychological distress (52.6%). Chronic physical morbidity, psychological distress, and secondary education status were associated with lower physical quality of life. Psychological distress, younger age, primary education status, and more time spent caregiving were associated with lower mental quality of life. Conclusion Poor physical and mental health among caregivers may impair their ability to provide adequate care to older adults with progressive medical needs. It is important for medical practitioners not to neglect the physical and mental health of caregivers through continued assessment of chronic physical morbidity, psychological distress, and quality of life.

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Caregivers for the elderly in Thailand: development and evaluation of an online support system

Informal caregivers are playing a major role in helping elderly people with their activities in daily life. The purpose of this work is to develop an Online Support System for Elderly Care (OSSEC) to provide services for informal caregivers in Thailand. The system has six modules which are: patient and caregiver profile manager, elderly care recommender applying case-based reasoning, daily care plan manager, elderly care activity notifier, elderly care information resource locator and caregivers’ social interaction platform. We have established the utility of OSSEC in enhancing the knowledge and ability of informal caregivers and in reducing their stress. In particular, we measured quantitatively the usefulness of OSSEC and evaluated user satisfaction as well.

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The relationship between formal and informal care among Chinese older adults: based on the 2014 CLHLS dataset

Background The substitute or complementary effect of formal care on informal care service used by the elderly has been tested in Western countries. However, this effect is excluded from the discussion in the Chinese context. The identification of the relationship between informal care and formal care may imply different directions in policy-making. Thus, this study contributes to understanding the relationship between informal care and formal care among Chinese older adults. Methods Using the dataset from the Chinese Longitudinal Healthy Longevity Survey (CLHLS) in 2014, this study uses regression models and instrumental variable (IV) method to examine the impact of formal care on informal care. Results The results primarily show that formal care does not substitute informal care among Chinese older adults. In fact, formal care is a supplement to informal care in China. Conclusion It is expected that informal care will become less available in the future in China. Thus, policymakers should be concerned about the underdevelopment of formal care for the elderly in China

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Optimizing Participation of Older Adults with Cognitive Deficits Post-stroke: Types of Help and Caregiver Burden

This longitudinal mixed-method study examined the types of help provided by caregivers to optimize participation of older adults with cognitive deficits post-stroke (care recipients), and how these types of help varied with caregiver's burden. Twelve family caregivers of care recipients post-stroke completed a burden questionnaire and semi-structured interviews one month, three months, and six months following care recipient's discharge home from acute care, rehabilitation, or day hospital. Care recipients completed cognitive tests and a social participation questionnaire. Types of help caregivers provided differed according to the amount of daily living support, degree of concern for care recipient's well-being, and impact on caregivers' social life. Interestingly, types of help fostering care recipient's social participation, self-esteem, and abilities were unrelated to a negative impact on caregivers' social life. Understanding how different types of help relate to caregiver burden could improve the types of help to optimize care recipients' social participation without overburdening caregivers

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Accuracy of Adult Children's Perceptions of Mothers' Caregiver Preferences

Background and Objectives Most older mothers have strong preferences regarding which offspring will serve as their future caregivers, and violation of these preferences has been found to have consequences for mothers' psychological well-being. However, no study has examined the accuracy of adult children's perceptions of their mothers' caregiver preferences. In this article, we compare mothers' stated preferences for particular caregivers with their adult children's perceptions of their mothers' preferences. Research Design and Methods Data were collected from 675 adult children and their mothers nested within 285 families as part of the Within-Family Differences Study. Results Only 44.6% of adult children accurately reported their mothers' preferences for particular offspring as caregivers. Consistent with our hypotheses, accuracy was higher when mothers and children shared values regarding filial piety, and lower when children were parents, had poor health, and lived further away. Surprisingly, primary caregivers were substantially less likely to accurately report mothers' caregiver preferences than were noncaregivers. This counterintuitive pattern can be explained by the finding that most mothers were cared for by children whom they did not prefer and may have therefore been reluctant to share their preferences with those caregivers. Discussion and Implications Given the negative psychological consequences for mothers whose caregiver preferences are violated, the high level of inaccuracy found among adult children has important implications when mothers face serious health events. These findings underscore the need for intervention efforts to encourage practitioners and clinicians to collect information directly from mothers regarding preferences for particular offspring as caregivers.

[Correction: In “Accuracy of Adult Children’s Perceptions of Mothers’ Caregiver Preferences,” DOI: 10.1093/geront/gny064, the sentence: “Seventy-five percent of the adult children for whom contact information was available agreed to participate, resulting in a final sample of 833 children nested within 277 families.” should read: “Seventy-five percent of the adult children for whom contact information was available agreed to participate, resulting in a final sample of 826 children nested within 360 families.”]

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Male/Female Differences in the Impact of Caring for Elderly Relatives on Labor Market Attachment and Hours of Work: 1997-2015

Objectives: Using representative samples of the Canadian labor market (N = 5,871,850), this study examined male/female differences in the impact of informal care on labor market attachment, and the extent to which differences in labor market participation and employment relationships explained these differences over a 19-year period. Methods: We examined four outcomes related to labor market impacts associated with caring for elderly relatives: leaving the labor market, working part-time, taking time off work in the previous week, and the amount of time taken off from work. Regression models examined differences between men and women, and the extent to which gendered labor market roles accounted for these differences. Results: We observed an increase in all labor market outcomes over the study period. Women were more likely than men to experience each outcome. Adjusting for labor market role variables did not change these estimates appreciably. After adjustment for differences in labor market roles women were 73% more likely to leave the labor market, more than 5 times more likely to work part-time, and twice as likely to take time off in the last week due to informal care. Further, for temporary absences to provide care, women took an average of 160 min more per week than men. Discussion: Taken together, these results suggest an increasing impact of informal care on labor market participation in Canada between 1997 and 2005, and it remains gendered. 

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Quality of life predictors in informal caregivers of seniors with a functional performance deficit - an example of home care in Poland

Background: There is insufficient research into informal caregivers' quality of life (QoL) in Poland. The purpose of this work is to study predictors that considerably affect QoL of informal caregivers (IC) providing home care for seniors with chronic diseases and a functional performance deficit. Materials and methods: In the cross-sectional research design, ICs were randomly chosen among the geriatric population receiving care in 5 primary health care settings. The WHOQoL-AGE questionnaire was used to assess QoL of ICs (n=138). The Barthel scale and Polish version of the Abbreviated Mental Test Score (AMTS) were applied to assess individuals with chronic diseases and functional and mental performance deficits (n=138). The Geriatric Depression Scale Short Form (GDS-SF) was used to measure the extent of risk of depressive symptoms in care-receivers. A hierarchical regression analysis was carried out to determine predictors of caregivers' QoL. Results: Mean values in the group of seniors provided with home care were as follows: the Barthel scale M=43.20, SD=27.06, the AMTS M=7.78 (SD=1.65), and the GDS-SF M=7.34 (SD=3.10). QoL of ICs (the WHOQoL-AGE) was M=70.14 (SD=15.31). Significant predictors of caregivers' QoL turned out to be support in care given by others β =0.605, p<0.001, experience in care β =-0.220; p<0.001, caregivers' health self-assessment β =0.174, p<0.001, and depressive disorders in care-receivers GDS β = −0.178, p<0.001. Conclusions: The QoL of ICs who provide care for individuals with chronic diseases and a functional performance deficit improves with an increase in the support they receive from others, their higher health self-assessment, and greater experience in care. An increase in depressive symptoms in care-receivers determines a lower level of caregivers' QoL.

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Care Stress Experienced by Caregivers of Elderly Individuals With Disabilities and the Coping Strategies Utilized: A Survey Study in the City of Nanjing, China

The objectives of this study were to (1) analyze the circumstances of caregivers of elderly individuals with disabilities; (2) present their levels of care stress; (3) examine family, market, and government factors that help reduce this care stress; and (4) identify the most effective method of alleviating stress for these individuals. Face-to-face interviews were conducted using standardized questionnaires. Caregivers experienced a moderate level of stress, which increased with time. Spouse caregivers experienced highest care stress, with psychological stress being greatest. All caregiver groups received different levels of care assistance from family, market, and government. Most received support from family, few paid for professional care market services, and most were unsatisfied with government care services. Stress was associated differently with care time, care assistance, and sociodemographic characteristics. Spouse caregivers, psychological counseling, and quality of public care services require further attention, with an integrated care system required to help alleviate care stress among caregivers.

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Caregiving for Older Adults with Limited English Proficiency: Transitioning from Hospital to Home

Background: Although the family caregiver workforce is increasingly diverse, little is known about culturally and linguistically diverse caregivers and patients for whom they care. Caregiver roles include communicating with health care teams on behalf of patients with language barriers.; Objective: Our objective is to describe characteristics and experiences of caregivers for patients with limited English proficiency (LEP) immediately following hospital discharge.; Design: Cross-sectional.; Participants: Primary informal caregivers for Chinese- and Spanish-speaking patients with LEP discharged from a large academic medical center's orthopedic surgery, general surgery, and cardiovascular inpatient floors from June 2012 to August 2013.; Main Measures: Bilingual-bicultural research assistants conducted baseline structured interviews with patients or surrogates in the hospital, and 3 weeks after discharge, gathering demographic and health information. They then interviewed by phone informal caregivers, identified by patients, to determine caregiving experiences.; Key Results: One hundred fifty-eight caregivers were interviewed post-discharge. Two-thirds (69.0%) were adults caring for parents or grandparents, and 20.9% were spouses or partners. Sixty-nine (43.7%) caregivers had LEP themselves, yet only 12% of patients reported having access to professional interpreters at the time discharge instructions were provided. Ninety percent reported performing three or more caregiving roles for the patient (helping at home, helping with medical decisions, helping with medical forms, helping communicate with medical staff, and talking with doctors about medical care). Forty percent reported moderate/high levels of perceived stress (some, most, or all of the time) caring for the patient. Multivariate regression revealed caregivers for Chinese-speaking patients, and those for patients discharged to another hospital were most likely to report moderate/high levels of perceived stress.; Conclusion: Culturally and linguistically diverse caregivers perform multiple roles caring for patients with LEP, often have LEP themselves, and experience notable levels of stress. These results also demonstrate an opportunity to expand the use of professional interpreters at hospital discharge to avoid communication errors.

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Economic costs of informal care for people with chronic diseases in the community: Lost income, extra welfare payments, and reduced taxes in Australia in 2015–2030

We estimated the economic costs of informal care in the community from 2015 to 2030, using an Australian microsimulation model, Care&WorkMOD. The model was based on data from three Surveys of Disability, Ageing, and Carers (SDACs) for the Australian population aged 15–64 years old. Estimated national income lost was AU$3.58 billion in 2015, increasing to $5.33 billion in 2030 (49% increase). Lost tax payments were estimated at AU$0.99 billion in 2015, increasing to AU$1.44 billion in 2030 (45% increase), and additional welfare payments were expected to rise from $1.45 billion in 2015 to AU$1.94 in 2030 (34% increase). There are substantial economic costs both to informal carers and the government due to carers being out of the labour‐force to provide informal care for people with chronic diseases. Health and social policies supporting carers to remain in the labour force may allow governments to make substantial savings, while improving the economic situation of carers.

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Perceptions of family caregivers on the implementation of the cordial older family nursing model: A qualitative study

Objectives: This study aims to understand the perceptions of family members as caregivers on the implementation of the cordial older family nursing model.; Method: This study used a qualitative phenomenological study with an in-depth interview. A total of 18 Participants were selected using a purposive sampling technique. The data from the participants was acquired through semi-structured interviews. Subsequently, the data were analyzed using the Colaizzi method. This study has obtained approval from the research ethics committee.; Results: This study highlighted five focal themes, include (1) expressed emotions among caregivers, (2) caregivers of the older persons, (3) the impact of the cordial older family nursing model, (4) caregivers' expression of gratitude toward the older persons, and (5) barriers to providing nursing through the cordial older family nursing model.; Conclusion: Family caregivers have some issues concerning how to provide care to older persons in wide-ranging activities. Post implementation of the cordial older family nursing model revealed that family caregivers showed positive values and attitudes such as emotional expression, types and means of care, and appreciation of the older persons.;

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Homebound Status and the Critical Role of Caregiving Support

The homebound population relies on both paid and family caregivers to meet their complex care needs. In order to examine the association between intensity of caregiving support and leaving the home, we identified a population of community-dwelling, homebound Medicare beneficiaries age ≥65 (n = 1,852) enrolled in the 2015 National Health and Aging Trends Study and measured the support they received from paid and family caregivers. Those who had ≥20 h of caregiving support per week had 50% less odds of being "exclusively homebound" (rarely or never leave home) (OR 0.56, p < .01). Policies that facilitate increased support for family caregivers and better access to paid caregivers may allow homebound individuals who would otherwise be isolated at home to utilize existing community-based long-term care services and supports.

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Predictors of Secondary Role Strains Among Spousal Caregivers of Older Adults With Functional Disability

Background and Objectives: Aging spouses commonly care for a partner with functional disability, but little is known about how spousal caregiving may impact different life domains. This study evaluated how caregiving characteristics are associated with secondary role strains among spousal caregivers. Research Design and Methods: This cross-sectional study examined 367 spousal caregivers and their partners from the 2011 National Health and Aging Trends Study and National Study of Caregiving. Hierarchical regressions were estimated to determine how caregiver background factors (sociodemographics, health conditions) along with primary objective (care activities, care recipient health conditions, and dementia status) and subjective (emotional caregiving difficulties, role overload) stressors are linked to care-related valued activity restriction, negative caregiving relationship quality, and care-related family disagreements. Gender differences were considered. Results: After accounting for all predictors, older caregivers and caregivers providing more help with activities of daily living and health system interactions (e.g., scheduling appointments) were more likely to report activity restriction, whereas caregivers with more emotional difficulties reported higher negative caregiving relationship quality. Role overload was positively associated with all three secondary strains. For husbands only, caring for a partner with more chronic conditions was linked to higher negative caregiving relationship quality and caring for a partner with dementia was associated with a greater likelihood of family disagreements. Discussion and Implications: Secondary role strains may develop through similar and unique pathways for caregiving wives and husbands. Further research is needed to identify those who could benefit from support in managing their care responsibilities alongside other life areas.

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Measuring triadic decision making in older patients with multiple chronic conditions: Observer OPTION

Objective: To develop a valid and reliable tool to measure triadic decision making between older adults with multiple chronic conditions (MCC), their informal caregivers and geriatricians. Methods: Video observational study with cross-sectional assessment of interaction during medical consultations between geriatricians (n = 10), patients (n = 108) and informal caregivers (68) by three calibrated raters at the geriatric outpatient department of two Dutch hospitals. The Observer OPTIONMCC instrument was developed, based on the 'Dynamic model of SDM in frail older patients' and the 'Observing Patient Involvement in Decision Making - 5 item scale' (Observer OPTION-5). Results: Factor analysis confirms that it is acceptable to regard the new scale as a single construct. The 7-item single factor solution explained 62.76% of the variability for geriatricians, 61.60% of the variability for patients and 54.32% of the variability for informal caregivers. The inter-rater ICC for the total Observer OPTIONMCC score was .96, .96, and .95 (resp. geriatricians, patients, informal caregivers), with values ranging from .60 to .95 for individual items, showing good levels of agreement. Conclusion and Practice Implications: We conclude that Observer OPTIONMCC is sufficiently valid and reliable to be used for the assessment of triadic SDM in populations of older patients with MCC.

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Female Family Caregivers' Experiences During Nursing Home Admission: A Phenomenological Qualitative Study

The experience of nursing home (NH) admission has a significant impact on older adults and their relatives. The aim of the current study is to describe the life experiences of female family caregivers (N = 20) after long-stay NH admission of their relative. A qualitative phenomenological approach was followed with purposeful sampling. Data were collected over 18 months using unstructured interviews, letters, and diaries and were analyzed using systematic text condensation analysis. Three themes emerged: The Value of Experience: Deciding on Admission and Defending One's Criteria; Living on Two Sides of the Same Coin; and Maintaining Contact. Results provide insight into female caregivers' experiences of NH admission, which may improve relationships established between female family caregivers and NH staff and help inform the decisionmaking process.

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Well‐being loss in informal care for the elderly people: Empirical study from China national baseline CHARLS

Introduction: Well‐being is an important component of health, while informal care plays a vital role in daily care of the elderly. However, the effects of informal care on the well‐being of the elderly remain unclear. This study was aimed to estimate such effects, in which well‐being was measured by 2 subjective indicators: happiness and life satisfaction. Methods: Potential endogeneity was purified using instrumental variables. Data were collected from national baseline China Health and Retirement Longitudinal Study (CHARLS). Results: Receiving informal care would decrease the elderly's happiness score and life satisfaction score significantly. The health produced from informal care cannot offset the health depreciation caused by aging. Discussion To improve the well‐being of the elderly, caregivers have more to do and policymakers can design designated care policies based on our results.

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Spousal Caregivers Are Caregiving Alone In The Last Years Of Life

Caregiving in the last years of life is associated with increased depression and negative health outcomes for surviving spouses, many of whom are themselves in poor health. Yet it is unclear how often spouses are caregiving alone, how they differ from supported spouses, and whether lack of support affects postbereavement outcomes. We hypothesized that spouses who were solo caregivers--that is, the only caregivers (paid or unpaid) who provided assistance with a spouse's selfcare or household activities--would experience more depression after bereavement than supported spouses would. Using information from the Health and Retirement Study, we found that 55 percent of the spouses of community-dwelling married people with disability were solo caregivers. Solo caregiving was even common among people who cared for spouses with dementia and those with adult children living close by. Bereavement outcomes did not differ between solo and supported caregiving spouses. Caregiving spouses are often isolated and may benefit from greater support, particularly during the final years before bereavement. While some state and federal policy proposals aim to systematically recognize and assess caregivers, further innovations in care delivery and reimbursement are needed to adequately support seriously ill older adults and their caregivers. Ultimately, the focus of serious illness care must be expanded from the patient to the family unit.

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Work-Related Opportunity Costs Of Providing Unpaid Family Care In 2013 And 2050

Older Americans living in the community who need help with functional limitations overwhelmingly rely on unpaid care, which is often provided by working-age family members. This study assessed the impact of unpaid family caregiving on the likelihood of working and hours worked for caregivers and calculated the related cost of forgone earnings in 2013 and 2050. The current economic cost is about $67 billion, which by midcentury will likely double to $132-$147 billion, fueled primarily by the growth of the disabled older population and the increased share of better-educated caregivers. Average opportunity cost per caregiver will likely increase by 8-20 percent and per US resident by 54-72 percent. Future policy action could benefit from accounting fully for the economic costs in addition to the benefits of unpaid caregiving, which would help better define the scope and size of programs needed to support caregivers. 

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The relationship between elder care-giving and labour force participation in the context of policies addressing population ageing: A review of empirical studies published between 2006 and 2016

This paper systematically reviews empirical research published between 2006 and 2016 on the relationship between informal care-giving to elders and labour force participation (LFP). It does so in the context of Organisation for Economic Co-operation and Development policy responses to population ageing. In this context, conclusions regarding the LFP and care-giving relationship should at least be applicable to the sub-population of working-aged individuals who are most likely to provide informal elder care. Currently, these are women in mid-life and the recipients of their care are mostly extra-residential parents. The review's key conclusion is that mid-life women care-givers of elderly parents are significantly likely to reduce their working hours and also to work fewer hours relative to their non-care-giving counterparts. In drawing this conclusion, the review shows that studies finding only modest care-giving effects on LFP either do not adequately control for care-giving intensity or their conclusions apply to sub-populations less likely to be affected by policies addressing population ageing.

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Older persons’ experiences of adapting to daily life at home after hospital discharge: a qualitative metasummary

Background Researchers have shown that hospitalisation can decrease older persons’ ability to manage life at home after hospital discharge. Inadequate practices of discharge can be associated with adverse outcomes and an increased risk of readmission. This review systematically summarises qualitative findings portraying older persons’ experiences adapting to daily life at home after hospital discharge. Methods A metasummary of qualitative findings using Sandelowski and Barroso’s method. Data from 13 studies are included, following specific selection criteria, and categorised into four main themes. Results Four main themes emerged from the material: (1) Experiencing an insecure and unsafe transition, (2) settling into a new situation at home, (3) what would I do without my informal caregiver? and (4) experience of a paternalistic medical model. Conclusions The results emphasise the importance of assessment and planning, information and education, preparation of the home environment, the involvement of the older person and caregivers and supporting self-management in the discharge and follow-up care processes at home. Better communication between older persons, hospital providers and home care providers is needed to improve the coordination of care and facilitate recovery at home. The organisational structure may need to be redefined and reorganised to secure continuity of care and the wellbeing of older persons in transitional care situations.

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What Are the Characteristics of Caregivers Logging in for Support Services?

Background and Objectives: Online service delivery options have the potential to increase access to informational resources among caregivers to older adults. However, it is unknown which caregivers will use online-delivered services over usual service delivery modes (e.g., by phone) when both options are available in social service settings. This is important for service providers to know when making decisions that best serve their communities. Research Design and Methods: Guided by Andersen’s model of health service utilization, we used step-wise logistic regression models to compare the characteristics of caregivers who used an online information service called FCA CareJourney (FCA CJ) with those who accessed the same services using the usual mode of service delivery (N = 540). Online and usual-care services were available through two social service organizations in California. Results: In all, 13.7% of clients used FCA CJ to receive services online. Enabling characteristics were the main predictors of using online-delivered services. Caregivers employed part-time had 3.82 times the odds of using online-delivered services compared to those employed full-time (odds ratio [OR] = 3.82; 95% confidence interval [CI]: 1.58–9.22). Caregivers who learned about services from health care providers had 2.91 times the odds of using FCA CJ as those who learned about services through social services (OR = 2.91; 95% CI: 1.28–6.62). Even among those who learned about services online, 62.2% still accessed services using usual delivery modes. Discussion and Implications: Based on differences in the characteristics of caregivers using different service delivery modes and the low uptake of online-delivered services, we suggest online service delivery should supplement, not replace, usual delivery modes in social service settings. At the same time, user rates of online service delivery are likely modifiable. Given the potential for online-delivered programming to expand access to information services for caregivers, we recommend further examination into the effects of marketing online service delivery options to caregivers in novel ways

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Pilot Study of a Transitional Intervention for Family Caregivers of Older Adults

Objective : To conduct a formative evaluation of a transitional intervention for family caregivers, with assessment of feasibility, acceptability, appropriateness, and potential benefits. Methods : The intervention aimed to provide emotional support, information on community resources, and information and support for development of coping skills for the caregivers of patients aged 65 and older who were to be discharged home from an acute medical hospital admission. We used a one-group, pre- and three-month post-test study design. Results: Ninety-one patient-caregiver dyads were recruited. Of these, 63 caregivers (69%) received all five planned intervention sessions, while 60 (66%) completed the post-test. There were significant reductions in caregiver anxiety and depression following the intervention, and high rates of satisfaction. Discussion: This transitional intervention should be further evaluated, preferably with a control group, either as a stand-alone intervention or as one component of a comprehensive transitional intervention for older patients and their caregivers.

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Caring for a frail older person: the association between informal caregiver burden and being unsatisfied with support from family and friends

Background/objective: although informal caregivers (ICG) find caring for a relative mainly satisfying, it can be difficult at times and it can lead to a state of subjective burden characterised by -among others- fatigue and stress. The objective of this study is to analyse the relationship between perceived social support and subjective burden in providing informal care to frail older people. Methods: a descriptive cross-sectional study was conducted using data from a large nationwide longitudinal effectiveness study. Pearson correlations were calculated between the variables for support and burden. Logistic regression models were applied to determine the association between being unsatisfied with support and burden, taking into account multiple confounding variables. Results: of the 13,229 frail older people included in this study, 85.9% (N = 11,363) had at least one informal caregiver. Almost 60% of the primary informal caregivers manifested subjective burden, measured with the 12-item Zarit-Burden-Interview (ZBI-12). The percentage of informal caregivers that were unsatisfied with support from family and friends was on average 11.5%. Logistic regression analysis showed that being unsatisfied with support is associated with burden (OR1.85; 95%CI1.53–2.23). These results were consistent for the three groups of impairment level of the frail older persons analysed. Conclusions: the association between perceived social support and subjective caregiver burden was explored in the context of caring for frail older people. ICGs who were unsatisfied with support were more likely to experience burden. Our findings underline the importance of perceived social support in relation to caregiver burden reduction. Therefore efforts to improve perceived social support are worth evaluating.

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End‐of‐life priorities of older adults with terminal illness and caregivers: A qualitative consultation

Background: As older adults approach the end‐of‐life (EOL), many are faced with complex decisions including whether to use medical advances to prolong life. Limited information exists on the priorities of older adults at the EOL. Objective: This study aimed to explore patient and family experiences and identify factors deemed important to quality EOL care. Method: A descriptive qualitative study involving three focus group discussions (n = 18) and six in‐depth interviews with older adults suffering from either a terminal condition and/or caregivers were conducted in NSW, Australia. Data were analysed thematically. Results: Seven major themes were identified as follows: quality as a priority, sense of control, life on hold, need for health system support, being at home, talking about death and competent and caring health professionals. An underpinning priority throughout the seven themes was knowing and adhering to patient's wishes. Conclusion: Our study highlights that to better adhere to EOL patient's wishes a reorganization of care needs is required. The readiness of the health system to cater for this expectation is questionable as real choices may not be available in acute hospital settings. With an ageing population, a reorganization of care which influences the way we manage terminal patients is required.

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Training family to assist with physiotherapy for older people transitioning from hospital to the community: a pilot randomized controlled trial

Objective: To investigate the safety and effectiveness of augmenting physiotherapy with family-assisted therapy, to inform a future, fully powered trial.; Design: Parallel pilot randomized controlled trial.; Setting: Transition Care Program.; Participants: Thirty-five older adults with multimorbidity, recently hospitalized, with a mean age of 84.1 years (SD = 6.1 years) and mean Modified Barthel Index of 67.8 units (SD = 19.2 units), and 40 family members.; Interventions: The control group ( n = 18) received usual physiotherapy care. The experimental group ( n = 17) received usual physiotherapy care and family-assisted therapy from a family member trained by a physiotherapist.; Main Measures: Primary outcomes were falls-related self-efficacy measured by the Short Falls Efficacy Scale - International and falls during the intervention period. Secondary outcomes included daily steps, EQ-5D-3L (three-level version of the EuroQoL five-dimensional health-related quality of life questionnaire) and ICECAP-O (ICEpop CAPability measure for Older people), Modified Barthel Index and Modified Caregiver Strain Index.; Results: There were no between-group differences for falls-related self-efficacy. Relative to the control group, the experimental group was observed to have a reduced risk of falling (relative risk = 0.38, 95% confidence interval (CI) = 0.09-1.60) and a reduced falls rate (incidence rate ratio = 0.22, 95% CI = 0.04-1.20) was of borderline statistical significance. The experimental group walked a mean of 944 daily steps more than the control group (95% CI = 139-1748) and had a significant reduction in activity limitation. There were no between-group differences for quality of life or caregiver strain.; Conclusion: Augmenting physiotherapy with family-assisted therapy is feasible for older people transitioning from hospital to the community. A fully powered randomized controlled trial is indicated.

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Caregiving, ethnicity and gender in Māori and non-Māori New Zealanders of advanced age: Findings from LiLACS NZ Kaiāwhina (Love and Support) study

Objective: This study investigates sex and ethnicity in relationships of care using data from Wave 4 of LiLACS NZ, a longitudinal study of Māori and non‐Māori New Zealanders of advanced age. Methods: Informal primary carers for LiLACS NZ participants were interviewed about aspects of caregiving. Data were analysed by gender and ethnic group of the LiLACS NZ participant. Results: Carers were mostly adult children or partners, and three‐quarters of them were women. Māori and men received more hours of care with a higher estimated dollar value of care. Māori men received the most personal care and household assistance. Carer employment, self‐rated health, quality of life and impact of caring did not significantly relate to the gender and ethnicity of care recipients. Conclusions: Gender and ethnicity are interwoven in caregiving and care receiving. Demographic differences and cultural expectations in both areas must be considered in policies for carer support. 

Policy Impact: Female predominance in caregiving is a robust finding in ageing studies. That men, particularly Māori men, received more informal care suggests that more research is needed to tease out influential demographic and cultural factors, to underpin equitable carer support services.

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Family Caregiving Situations and Engagement in Advance Care Planning

Background: Family members are involved in the decision-making process of advance care planning (ACP). However, there is limited evidence about how family caregiving situations affect engagement in ACP. Objective: To understand how agreement on caregiving situations and caregiving burdens are predictive of engagement in ACP of older adults. Design: Cross-sectional secondary data. Setting/Subjects: Subjects were nationally representative of adults ages 65 or older from the National Health and Aging Trends Study. Measurements: Informal engagement in ACP was measured based on whether respondents had discussed an end-of-life care option. The study involving formal engagement in ACP asked whether respondents have completed durable powers of attorney or living wills. Family members' agreement on caregiving situations and caregiving burdens were used to measure caregiving situations. We also include sociodemographic and health-related variables. Results: Higher levels of disagreement between family members concerning care for older adults were associated with engagement in formal ACP (odds ratio [OR] = 0.5); there were higher levels of caregiver burdens with engagement in formal ACP (OR = 1.1). The factors of being age 85 or older (OR = 2.2) and having fallen down in the previous year (OR = 1.9) were also related to formal engagement in ACP. Being white and having high school diplomas were associated with both informal and formal engagement in ACP. Conclusions: Caregiving situations may affect care recipients' decision-making regarding informal and formal engagement in ACP in different ways, suggesting different intervention strategies for different types of ACP.

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Care for Caregivers: Understanding the Need for Caregiver Support

Most long‐term care for older adults in the United States is provided by informal caregivers (Ahmad, [Ahmad, K., 2012]), the majority of whom experience an intense range of emotions from satisfaction to loneliness. Counselors must consider this emerging population of caretakers and learn methods to encourage clinical services to address their need for support. This article delineates experiences and challenges of informal caregivers and provides suggestions for effective clinical services for caregiver populations.

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Characteristics and Difficulties of Informal Caregivers in Assisting Elderly People

Objective: This study aims to identify the informal caregivers' difficulties in assisting the elderly patients of the Programa Saúde da Família [Family Health Program] in Bambuí city, Minas Gerais State, Brazil. Methods: This is a transversal research, approved by the Certificado de Apresentação para Apreciação Ética (CAAE) [Certificate of Presentation for Ethical Appreciation] No. 0146.0.213.000-11. Seventy elderly people and their informal caregivers were interviewed and the collected data were analyzed. Results: The treatment of cognitive disorders in the elderly (32.9%) and the lack of knowledge about the health care delivered (20%) were the main difficulties stated by the caregivers. These results also showed a bivariate relationship with "difficulty during care": the caregivers who stated that they slept less (≤ 6 hours/night) (%), "did not have a caregiver course" (%) and did not have "leisure activity" (%); regression: individuals who affirmed that they had not completed a course for caregivers of the elderly. Conclusion: It was settled that actions aiming to support the informal caregiver in face of the numerous difficulties faced in the care of the elderly are essential.

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A responsibility that never rests - the life situation of a family caregiver to an older person

Background: When the ageing population increases, the burden and responsibility of close family members will likely increase. Those closely related who assume a great responsibility can be significantly affected in health, well‐being and daily life. Aim: This study aims to describe the life situation when family caregivers are imposed responsibility for an older person with complex care needs in their own home. Methods: In this Swedish qualitative study, ten family caregivers were strategically selected in order to achieve variations in the life situation. A reflective lifeworld research design based on phenomenological philosophy was used throughout the data collection with the lifeworld interviews and the analytic process. Findings: In terms of extensive responsibility, the life situation is complex and involves emotions that are difficult to manage. In essence, a paradoxical life situation is described which is experienced as both voluntarily and nonchosen at the same time. The responsibility never rests. The essential meaning is further illustrated with three constituents: loss of freedom, contradictory feelings and affected relationships. Conclusion: A life situation with extensive responsibility for an older family member interferes with the whole life situation with an impact on health and relationships with other people. The findings are crucial for professional caregivers in order to capture the nature of family support in a way that enables a meaningful life for both the family caregiver and the older person being cared for. Knowledge of this will give professional caregivers an increased awareness of the life situation of family caregivers and provide a better understanding of the support they are longing for, and, in some countries, such as Sweden, also are entitled to by law.

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The art of maintaining everyday life: collaboration among older parents, their adult children, and health care professionals in reablement

Background: A shift in the work-divide among generations and an ageing population have altered the balance of care and support between families and welfare states. Although state policy has increasingly acknowledged that older adults ageing in place receive support from family members, how adult children perceive their collaboration with their parents and health care professionals in reablement services remains unclear. The aim of this study is to identify how adult children perceive the collaboration between older parents, family members, and health care professionals in reablement services. Methods: This study has a qualitative research design with a constructivist grounded theory approach. In total, 15 adult children - 6 sons, 8 daughters, and a daughter-in-law, aged 47-64 years - whose parents had received reablement services, participated in in-depth interviews. Results: Our findings clarify how children and their older parents' reablement services can collaborate to support how the adult children manage and maintain both their own and their parents' everyday lives. The core category derived from our data analysis was the art of maintaining everyday life, with four subcategories indicating the different dimensions of that process: doing what is best for one's parents, negotiating the dilemmas of everyday life, managing parents' reablement, and ensuring the flow of everyday life. Conclusion: To promote collaboration among older adults, their children, and health care professionals in reablement, health care professionals need to proactively involve older adults' family members in the reablement processes, particularly because older adults and their children do not always express all of their care-related needs to reablement services. 

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Women Caring for Our Aging in Place Seniors Will Lose Out because of U.S. Immigration Policies

Most older people experiencing chronic health problems, physical disabilities, and memory losses are still able to age in place in their own homes. However, they often need help from others to enjoy healthy, active, and independent lives. They turn mostly to family members, mainly women and usually their daughters, daughters-in-law or wives. But caring for frail elders has become more demanding and complex, and these family members often feel physically and emotionally overwhelmed and burnt out. They concede that they cannot do it alone. Others find it more difficult to hold full-or even part-time jobs. Hiring home (direct) care workers to assist their loved ones can be an effective solution to ease their caregiving responsibilities. However, these personal care aides, home health aides, and nursing assistants are already in short supply. Moreover, going forward the aging of the baby boomer population will result in an even greater demand for their services even as these jobs are often unattractive to American-born workers and turnover is high. This country's immigration policies will make it even more difficult for women caring for older persons to hire these workers. Over 25 percent of home care workers are low-skilled immigrants or foreign-born. However, the Trump administration's policies reduce the number of immigrants entering the U.S. and specifically choke off the various pathways that enable low-skilled persons to be hirable in the home care sector. Female caregivers seeking relief from their caregiving responsibilities will lose out unless we remove these immigration barriers.

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Do Family Caregivers Offset Healthcare Costs for Older Adults? A Mapping Review on the Costs of Care for Older Adults With Versus Without Caregivers

Background and Objectives: Older adults face significant long-term care and health care costs. But some of these costs can potentially be offset through family caregivers who may serve as substitutes for formal care or directly improve the care recipient’s health and reduce health care utilization and expenditures. This article reviews the current literature to determine whether it is possible through existing work to compare the costs of care for individuals with versus without family caregivers and, if not, where the data, measurement, and other methodological challenges lie. Research Design and Methods: A mapping review of published works containing information on health care utilization and expenditures and caregiving was conducted. A narrative approach was used to review and identify methodological challenges in the literature. Results: Our review identified 47 articles that met our criteria and had information on caregiving and health care costs or utilization. Although findings were mixed, for the most part, having a family caregiver was associated with reduced health care utilization and a decreased risk of institutionalization however, the precise difference in health care expenditures for individuals with caregivers compared to those without was rarely examined, and findings were inconsistent across articles reviewed.  Discussion and Implications: The number of family caregivers providing care to loved ones is expected to grow with the aging of the Baby Boomers. Various programs and policies have been proposed to support these caregivers, but they could be costly. These costs can potentially be offset if family caregivers reduce health care spending. More research is needed, however, to quantify the savings stemming from family caregiving.

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End-of-Life Preparations Among LGBT Older Canadian Adults: The Missing Conversations

LGBT (lesbian, gay, bisexual, and transgender) older adults are more likely than their heterosexual peers to age with limited support in stigmatizing environments often poorly served by traditional social services challenging their preparedness for end of life. Fourteen focus groups and three individual interviews were conducted in five Canadian cities with gay/bisexual men (5 groups 40 participants), lesbian/bisexual women (5 groups 29 participants), and transgender persons (3 interviews, 4 groups 24 participants). Four superordinate themes were identified: (a) motivators and obstacles, (b) relationship concerns, (c) dynamics of LGBT culture and lives, and (d) institutional concerns. Several pressing issues emerged including depression and isolation (more common among gay and bisexual men), financial/class issues (lesbian and bisexual women), and uncomfortable interactions with health-care providers (transgender participants). These findings highlight the challenges and complexities in end-of-life preparation within LGBT communities.

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Factors Associated with Receipt of Training Among Caregivers of Older Adults

This study uses data from the 2015 National Health and Aging Trends Survey to investigate whether family and unpaid caregiver characteristics are associated with the receipt of caregiver training.

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Connecting Caregivers to Support: Lessons Learned From the VA Caregiver Support Program

Development and evaluation of supportive caregiver interventions has become a national priority. This study's aim was to evaluate how caregivers participating in the Department of Veterans Affairs (VA) Caregiver Support Program (CSP) use and value supportive services. Qualitative semi-structured interviews ( N = 50 caregivers) were the core of a mixed-methods design, and surveys ( N = 160) were supplemental. Caregivers who had used CSP services valued emotional, functional, and health care navigational support, calling support groups and the program coordinator their "lifeline." However, many described a lack of connection with the program-not knowing about or successfully engaging in program services-and needed more information about available resources. Caregivers in rural areas or caring for individuals with specific diseases reported needing tailored services to meet their unique needs. Policy makers and practitioners should proactively promote supportive services for caregivers. Future research should explore strategies for reducing barriers to accessing tailored support to meet the needs of a diverse caregiver population.

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Health effects of caring for and about parents and spouses

Informal caregiving is a potentially attractive alternative to formal care but may entail health costs for the caregiver. We examine the mental and physical health impact of providing informal care and disentangle the caregiving effect – the effect of caring for someone in need – from the family effect – the effect of caring about someone in need. We account for the main sources of endogeneity in the caregiving decision using Arellano-Bond difference GMM models. We use four waves (2010–2013) of panel data from the Dutch Study on Transitions in Employment, Ability and Motivation (STREAM). We find that caregiving harms the mental health of caregivers the effect is more prominent for spousal caregivers. On top of this, a negative health shock of a family member also has a direct negative effect on mental health, providing evidence of a family effect. Our findings thus highlight that the total effect of having a sick relative may be underestimated when the family effect is not adequately accounted for. As the caregiving effect differs substantially between various types of caregivers, policies to cushion these effects should specifically target those subgroups of caregivers that carry the largest burden of informal caregiving.

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Who provides care in the last year of life? A description of care networks of community-dwelling older adults in the Netherlands

Background: Home-based care networks differ in size and composition, but little is known about the characteristics of care networks for those nearing the end of their lives. This study aimed to identify different types of home-based care networks of community-dwelling older adults in the Netherlands and to assess the association between care network type and the health status and socio-demographic characteristics of care recipients. Methods/design: We used data from participants of the Longitudinal Aging Study Amsterdam (2001–2013) with chronic diseases or functional limitations who died within 12 months of their last interview and received home based personal and/or household care (n = 146). Latent Class Analysis was used to model distinct end-of-life care networks among this pooled cross-section of older people whose characteristics imply care needs. The Akaike information criterion was used to determine the optimal model. Associations between network type and care recipient characteristics were explored using conditional inference trees. Results: We identified four types of care networks; a partner network (19%) in which care was mainly provided by partners, with little care from private caregivers or professionals, a mixed network (25%) in which care was provided by a combination of children, professionals and/or other family members, a private network (15%) in which only privately paid care was provided, and a professional network (40%) in which care was mainly provided by publicly paid professionals, sometimes with additional care from family or privately paid caregivers. Care networks near the end of life showed similar characteristics to those identified for older people more generally, but care seemed to be more intensive in the last year of life compared to the years preceding it. End-of-life care networks were mostly related to age, educational level and partner status. Formal care substitutes informal care whenever there is no partner or child present and able to provide care. Conclusion: Our findings indicate that personal and household care can be quite intensive in the last year of life, especially for partner caregivers. To prevent caregiver burden, it is important that professionals make sure partner caregivers receive adequate and timely support to cope with the care situation.

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Family Caregiving in Serious Illness in the United States: Recommendations to Support an Invisible Workforce

Family caregivers provide the vast majority of care for individuals with serious illness living in the community but are not often viewed as full members of the healthcare team. Family caregivers are increasingly expected to acquire a sophisticated understanding of the care recipient's condition and new skills to execute complex medical or nursing tasks, often without adequate preparation and support, and with little choice in taking on the role. This review draws on peer‐reviewed literature, government reports, and other publications to summarize the challenges faced by family caregivers of older adults in the context of serious illness and to identify opportunities to better integrate them into the healthcare workforce. We discuss promising approaches such as inclusion of family caregivers in consensus‐based practice guidelines; the “no wrong door” function, directing consumers to needed resources, regardless of where initial contact is made; and caregiver‐friendly workplace policies allowing flexible arrangements. We present specific recommendations focusing on research, clinical practice, and policy changes that promote family‐centered care and improve outcomes for caregivers as well as persons with serious illness.

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Racial Differences in Caregiving: Variation by Relationship Type and Dementia Care Status

Objective: To examine differences between White and African American caregivers in strain, health, and service use in a population-based sample of informal caregivers for older adults. We also assessed whether relationship type (parent, other family, friend) and dementia care status (yes or no) were moderators of any racial differences. Method: We examined 887 informal caregivers via covariate-adjusted 3 × 2 × 2 factorial ANOVAs. Results: After covariate adjustment, there were few significant racial differences in caregiving strain, health, and service use. Dementia caregivers reported greater strain, and there were three-way interactions among relationship type, dementia care status, and race for physical strain and emotional stress. Discussion: Previous findings suggesting substantial racial differences in caregiver strain, which have primarily come from convenience samples that combined care relationship types, were not replicated. Racial and ethnic differences in caregiving may be context-specific. Historical changes in caregiving should be examined in future research.

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Do Income Supplemental Programs for Older Adults' Help Reduce Primary Caregiver Burden? Evidence from Mexico

In countries such as Mexico without formal public long-term care policies, informal care becomes the main source of support for older adults. Alternative social programs, such as supplemental income programs, for older adults could alleviate caregiver burden, especially if supplemental income were to be used for paid care or to compensate non-paid family caregivers. This work is the first to analyze the effects of a supplemental income program for older adults on primary caregiver burden. To identify how such a program might affect caregiver burden, we analyze rich panel data on 433 adults 70 years and older in two communities, one receiving a supplemental income program and the other not, in Yucatan, Mexico. Data were collected in 2008 and 2009 among treatment and control groups before and 6 months after program introduction. We employ a difference-in-differences approach. In our sample, most care is provided by non-paid female caregivers. We find that individuals in both the treatment and control groups received fewer hours of care over time. The decrease was lower for older adults who received the supplemental income, but the difference with those who did not was not statistically significant. We also observe few changes on caregiving burden; even after program introduction, more than 98% of caregivers remained unpaid and the same primary caregiver remained. Altogether, our work suggests supplemental income programs have negligible effects on caregiving, making evident the urgent need for other strategies to support non-paid caregivers who bear most of the burden for old-age care in Mexico.

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Life course trajectories of family care

More than 30 years ago, Elder theorised multiple life-course trajectories in domains such as family and work, punctuated by transitions that create the structure and rhythm of individual lives. We argue that in the context of population ageing, family care should be added as a life-course domain. We conceptualise life courses of family care with core elements of 'care as doing' and 'care as being in relationship', creating hypothetical family care trajectories to illustrate the diversity of life-course patterns of care. The framework provides a basis for considering influences of care on cumulative advantage/disadvantage for family carers.

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Perceived reliability of assistance among American older adults: a study of kin and non-kin help

As a neglected dimension of the quality of care, assessments of caregiver reliability by older adults receiving help contributes to the better understanding of unmet needs for assistance in everyday life. This study examines how the numbers and composition of helpers - both potential and actual - relate to older Americans' reports of the reliability of assistance. According to the 2008 US National Elder Mistreatment Study (<i>n</i> = 2,176), the potential network, proxied by marital status and household size, was not a significant predictor of unreliable care, nor was the actual number of caregivers. We distinguish four types of helping sources: kin-only; exclusively informal non-kin (eg friends, neighbours); exclusively formal (paid); and mixed type. There was a higher risk of unreliable care among respondents relying exclusively on informal non-kin assistance compared with exclusively kin help. Kin-only provided more reliable care than informal non-kin but were no more reliable than formal or mixed types.

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The availability of carers for older disabled people in Spain: demographic insights and policy implications

The growth of the older population with care needs, together with the decrease of the population traditionally providing such care, are the most frequently cited consequences of demographic change affecting long-term care policies. This study examines the changes in the availability of carers in Spain (1998-2018) using survey data. Results point to a decrease of potential carers in terms of intergenerational care, but also to an increase of potential carers among older people of the same generation.

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Personhood, identity and care in advanced old age by Paul Higgs and Chris Gilleard

How does society collectively envision what ‘old age’ looks like, and what does this vision mean for how we plan for, support and conceptualise care? This book explores the concepts and practices of care in relation to what Higgs and Gilleard describe as the social imaginary of the fourth age: a collective representation of later life composed of those elements most feared about ‘extreme’ older age, namely, physical and cognitive decline, infirmity, and, ultimately, failure. They begin by outlining how the social imaginary of the fourth age has emerged in contrast to that of a third age of ‘successful aging’, wherein an older individual is imagined to be able to exert autonomy, retain productivity and continue an active lifestyle.

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Physical and mental health of Chinese grandparents caring for grandchildren and great-grandparents

The increasing worldwide prevalence and intensity of grandparenting has attracted an attention to its health implications for caregivers against the backdrop of population aging. Thanks to prolonged life expectancy and reduced infant mortality, extended families that comprise four generations, co-residential or not, are no longer rare in China. The current study examines health consequences when Chinese grandparents provide care to not only grandchildren but also their own elderly parents or parents-in-law (i.e., great-grandparents). Drawing on data from the 2011–2013 China Health and Retirement Longitudinal Study (CHARLS), mental health was captured by levels of life satisfaction and depressive symptoms, and physical health was measured by levels of high sensitivity C-reactive protein (CRP), hypertension, high-risk pulse rate, and diabetes. Overall grandparents who cared for grandchildren only had better mental and physical health, compared with non-caregivers. There was some evidence that the 'sandwich' grandparents who cared for both grandchildren and great-grandparents reported greater life satisfaction, fewer depressive symptoms, and reduced hypertension compared with non-caregivers. The health advantage of caregiving was most pronounced in urban grandfathers whose caregiving conformed to the norm of filial piety and who did so most likely to seek emotional reward instead of an intergenerational time-for-money exchange. In contrast, rural grandmothers were the most vulnerable group and their health disadvantage seemed to arise from caring for great-grandparents. These findings highlight the importance of rural-urban context and gender role in studying the health effects of intergenerational caregiving on Chinese grandparents. • About 30% of the Chinese elderly are grandparents in four-generation families. • The majority of them care for grandchildren, great-grandparents, or both. • Urban grandfathers enjoy health benefits from intergenerational caregiving. • Rural grandmothers suffer health risks from intergenerational caregiving.

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Ageism in informal care network members of older women

Objectives: Negative attitudes toward aging are common among formal healthcare providers, but have been infrequently assessed among informal caregivers providing assistance to older adults. The current study sought to identify factors associated with ageism toward older women.; Design: Multivariate hierarchical linear regression modelSetting:Lower-income neighborhoods in an urban setting in the Midwestern USAParticipants:144 care network members of White and African American women aged ≥ 65 years Measurements: Age Group Evaluation and Description (AGED) Inventory assessed attitudes toward older women; CES-D scale measured depressive symptoms; Intergenerational Affectional Solidarity Scale assessed relationship closeness.; Results: In bivariate analyses, African American caregivers endorsed more positive attitudes toward older women. In the multivariate regression model, attitudes toward older women were associated with care recipient health (β = 0.18, p < 0.05) and relationship closeness with the care recipient (β = 0.23, p < 0.05). However, these associations were fully mediated by care recipient-specific attitude ratings by the care network member. The association between person-specific attitudes and general attitudes was uniquely directional.; Conclusions: Findings from the present study are consistent with past research suggesting that 'ageism' may, at least in part, derive from bias against perceived poor health. Further, our findings of an association between attitude toward the care recipient and attitudes toward older women in general provide support for cognitive psychology theory which emphasizes the role of personal experience in stereotype formation through the availability heuristic. The current study underlines the necessity for development of interventions to address ageism in informal caregivers.

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Caregiver Reward and Burden: Differing Constructs in Family Members Providing Care for Medically Ill Homebound Older Adults

Objective: This study examined the relationship between caregiver burden and reward and how each relates to factors, such as depression, within the caregiving dyad.; Method: A total of 101 older adults and their primary family caregivers were recruited upon enrolling in home health care services. Patients were assessed for sociodemographic information, depression, disability, pain, and caregiver support at baseline and at 8 weeks. Caregivers were assessed at baseline for sociodemographic information, depression, caregiver burden, caregiver reward, and caregiving tasks they provide.; Results: Burden and reward were significantly inversely correlated, but differentially associated with distinct patient and caregiver variables. Patients whose caregivers reported higher baseline levels of caregiver reward were more likely to have lower depression scores at follow-up.; Discussion: Given that different aspects of patients and caregivers influence reward and burden, assessing caregivers for both burden and reward may better target caregiver interventions at the individual and family levels, particularly for older adult depression.

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Levels of Satisfaction, Workload Stress and Support Amongst Informal Caregivers of Patients Receiving or Not Receiving Long-Term Home Nursing Care in Poland: A Cross-Sectional Study

The role of informal caregivers was included in the Assumptions of the Long-Term Senior Policy in Poland for 2014-2020. The document acknowledged the necessity of diagnosing the needs of informal caregivers of elderly people and to implement systemic solutions that would enable the provision of assistance for them. In response, this study aimed to describe the situation of caregivers of patients receiving versus patients not receiving Long-Term Home Nursing Care (LTHNC; i.e., a formal program including regular visits by a nurse specializing in home care) in terms of caregiver socio-demographic characteristics, health self-assessment, work overload, satisfaction derived from being a caregiver, and the quality of perceived support. A cross-sectional study was conducted using the Carers of Older People in Europe (COPE) Index in 2015 in the north-eastern part of Poland involving 170 caregivers of patients supported with LTHNC and 86 caregivers of patients staying at home and not receiving LTHNC. We found that caregivers for patients receiving LTHNC were significantly less overloaded with care work than caregivers for patients without LTHNC support (p < 0.001). LTHNC support was also related to the level of satisfaction with providing care: Caregivers for patients receiving LTHNC were significantly more satisfied with performing their role and felt greater support than caregivers for patients without LTHNC (p < 0.001). Our study provides evidence for a positive relationship between LTHNC and the situation of informal caregivers of dependent elderly people at home. A formal program of visits by a nurse specializing in long-term home care may facilitate the provision by caregivers of better informal care to patients staying at home.

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CE: Original Research: New Acute Symptoms in Older Adults with Cognitive Impairment: What Should Family Caregivers Do?

The authors assessed the frequency with which family caregivers of older veterans with cognitive impairment sought guidance for new physical or behavioral symptoms and described the characteristics of such events, including the diagnoses and advice given. Background: When older adults with cognitive impairment develop new physical or behavioral symptoms, their family caregivers face a difficult decision: whether and when to seek professional medical care. Most family caregivers lack formal training in assessment and may have difficulty making such decisions. The Veterans Health Administration's home-based primary care (HBPC) program, which is widely available, offers community-dwelling frail veterans and their family caregivers guidance, with the goal of reducing hospitalization and institutionalization in long-term care facilities. Objective: This study sought to assess the frequency with which family caregivers of cognitively impaired older adults sought prehospital guidance from health care professionals when that resource was available to them, and to describe the characteristics of such events. Methods: This study used a retrospective chart review of patients who were enrolled in the Orlando Veterans Affairs Medical Center HBPC program for at least one month between October 1, 2013, and September 30, 2014; had a diagnosis indicative of cognitive impairment (Alzheimer's disease, vascular dementia, or mild cognitive impairment); had a dedicated family caregiver; and were not enrolled in hospice care. Data were collected from data collection templates and nurses' narrative notes. Univariate descriptive analyses were conducted regarding the type of staff contacted by family caregivers, the presenting diagnoses, the guidance offered by staff, and the number of unplanned acute care encounters. Results: Among the 215 patients studied, there were 254 unplanned acute care encounters (including ED visits followed by discharge to home and ED visits resulting in hospital admission). Family caregivers sought guidance from a health care professional 22% of the time before such an encounter. The presenting clinical issues were most often new problems (43%) that included falls, feeding tube problems, fever, new pain, rash or other skin problems, and unexplained edema. Overall, 25% of all unplanned acute care encounters were for reasons considered potentially avoidable. About half of the patients who were subsequently hospitalized had symptoms of delirium, indicating that their illness had significantly advanced before presentation. Conclusions: It's important for health care professionals to ensure that family caregivers of cognitively impaired older adults can access professional guidance readily when facing decisions about a loved one's care, especially when there is an acute onset of new symptoms. Teaching caregivers how to recognize such symptoms early in order to prevent exacerbations of chronic illness and subsequent hospitalization should be a high priority. Our findings underscore the need to do so, so that caregivers can best use the resources that HBPC programs have (or ought to have) in place, in particular 24/7 guidance and decision assistance.

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Are the Elderly Perceived as a Burden to Society? The Perspective of Family Caregivers in Belgium and Kenya: A Comparative Study

Introduction: It is estimated that 70% to 80% of informal care for frail and disabled elders is provided by family caregivers (FCGs).; Aim: To better understand how caregiving for the elderly has affected FCGs lives and to compare the perspective of these caregivers in Belgium and Kenya.; Method: Semistructured interviews were undertaken with 15 FCGs in Kenya and 15 FCGs in Belgium. Interpretative phenomenological analysis was used to identify themes.; Results: Themes discovered in the experience of family caregiving included profile of the care receiver, impact of caregiving on the FCG, cultural values and norms, challenges in caregiving, coping strategies and caregiver well-being.; Discussion: FCGs in both Kenya and Belgium identified experiencing serious concerns. In Kenya, the lack of resources and formal structures play a more important role than in Belgium. Despite this difference, culture-specific views and norms are paramount to explaining the FCG experience in the two countries.

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How to relieve stress in adult child caregivers of the older adults with disabilities: a survey study from the city of Nanjing, China

The care of older adults with disabilities (OADs) in China is mostly provided by their adult offspring. As the population continues to age, carer stress will increase. A survey of 900 adult child caregivers of OADs was conducted in Nanjing City, Jiangsu Province, China, and used to investigate the status and stress levels of caregivers in order to explore effective support for offspring caregivers and suggest improvements to the social care system. Multiple linear regression models were used to examine the effects of coping strategies on carer stress. Caregivers experienced stress at moderate or high levels due to physical, psychological, financial, and work issues. Stress was significantly associated with OADs' health status and self-care ability, and the amount of care time. Caregivers sought help from their families to care for elderly parents, which significantly relieved stress. The purchase of social care services and professional medical services for OADs significantly reduced stress; however, for elderly persons with high self-care ability, the purchase of social care services increased caregiver stress, while government-subsidized family nursing allowances reduced it. It is necessary to focus on the role of family care to stimulate mutual family support, and to integrate society and government support systems.

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Relationships and burden: An empirical-ethical investigation of lived experience in home nursing arrangements

Quantitative research has called attention to the burden associated with informal caregiving in home nursing arrangements. Less emphasis has been placed, however, on care recipients' subjective feelings of being a burden and on caregivers' willingness to carry the burden in home care. This article uses empirical material from semi-structured interviews conducted with older people affected by multiple chronic conditions and in need of long-term home care, and with informal and professional caregivers, as two groups of relevant others. The high burden of home-care arrangements is unanimously stressed by all three groups involved in the triangle of care. An empirical-ethical investigation of what can be legitimately expected from family members and informal caregivers, informed by Frith's symbiotic empirical ethics approach, was undertaken. Key tenets from the special goods theory and nursing professionalism are used as analytical tools. The study concludes that the current situation may hinder professional development and can reinforce feelings of being a burden to relevant others.

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The relationship between perceived social support and depressive symptoms in informal caregivers of community-dwelling older persons in Chile

Aim: Depression among caregivers of older persons is a serious concern, but it is often overlooked and neglected in developing countries. The aim of this study was to examine the relationship between perceived social support and depression in informal caregivers of community-dwelling older persons in Chile.; Methods: We analyzed cross-sectional secondary data on 377 dyads of community-dwelling older persons and their informal caregivers from a nationwide survey in Chile. The Duke-UNC Functional Social Support Questionnaire (FSSQ) was used to measure caregivers' perceived social support, and the Center for Epidemiologic Studies Depression Scale assessed their depression.; Results: In this study, 76.9% of the caregivers perceived a high level of social support, and 46.9% were assessed as having depression. Based on multivariable analysis, factors that decrease the likelihood of being depressed are a high level of social support (odds ratio (OR) = 0.311, 95% confidence interval (CI): 0.167-0.579) and having taken holidays in the past 12 months (OR = 0.513, 95%CI: 0.270-0.975). Factors that increase the likelihood of being depressed are being a female caregiver (OR = 2.296, 95%CI: 1.119-4.707), being uninsured (OR = 4.321, 95%CI: 1.750-10.672), being the partner or spouse of the care recipient (OR = 3.832, 95%CI: 1.546-9.493), and the number of hours of care (OR = 1.053, 95%CI: 1.021-1.085).; Conclusion: Higher levels of perceived social support and holidays were associated with lower levels of depression. However, being female, being the care recipient's partner or spouse, being uninsured, and having long care periods had detrimental effects. Interventions to preserve and enhance perceived social support could help improve depressive symptoms in informal caregivers. Additionally, support should be available to caregivers who are women, uninsured, and the care recipient's partner or spouse, as well as those who provide care for long hours, to ensure they have respite from their caregiving role.

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Foreign Domestic Workers and Eldercare in Singapore: Who Hires Them?

In Singapore, policy makers expect families to remain actively involved in the care of their frail older relatives, as manifestly expressed in its Many Helping Hands approach to long-term care. To enable families to fulfill this expectation, the government has enacted policies that encourage the hiring of foreign domestic workers (FDWs) to complement or supplement informal caregiving efforts. Using the Andersen Behavioral Model, we were interested in identifying caregiver and care receiver characteristics that might predict the hiring of FDWs. With data from a convenience sample of 488 informal caregivers, we ran logistic regression regressing the hiring of an FDW on various predisposing, enabling, and need factors. Of interest, enabling factors such as household income, housing type, and educational level were predictive of hiring an FDW in the home. Only one need factor, time spent in caregiving, was predictive of the increased likelihood to hire an FDW. Policies that encourage the marketization of care are likely to favor those with financial means and inadvertently ignore the caregiving burdens of lower income families. In addition, we suggest research and policies to ensure the well-being and protection of FDWs who have become a key component of the long-term care policy and practice in Singapore.

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Family caregivers' perceptions of maltreatment of older adults with dementia: findings from the northwest of Spain

Dementia is a neurocognitive disorder that implies a risk factor of maltreatment by family caregivers. In this study, we analyzed both informal caregiver's perceptions of maltreatment and aspects of the caregiver and caregiving behavior that may be associated with maltreatment. We conducted five focus groups (FGs) in three Spanish cities: Segovia, Soria and León. The themes that were identified were related to two levels of maltreatment: (a) relational and (b) institutional. At the relational level, we observed the justification of maltreatment of Older Adults with Dementia (OAswD) by family caregivers during the occurrence of behavioral symptoms. At the institutional level, we noted that lack of support from the government was considered a type of maltreatment. These themes suggest that policy issues related to healthcare should be considered.

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Multifactorial Examination of Caregiver Burden in a National Sample of Family and Unpaid Caregivers

OBJECTIVES To examine factors associated with caregiver burden from a multifactorial perspective by examining caregiver and care recipient characteristics and a full range of caregiving tasks. DESIGN Nationally representative surveys of community‐dwelling older adults and their family caregivers residing in the United States. SETTING 2011 National Health and Aging Trends Study and National Study of Caregiving. PARTICIPANTS Community‐dwelling older adults and their family caregivers. MEASUREMENTS Caregiver burden, comprising emotional, physical, and financial difficulties associated with caregiving. RESULTS: An estimated 14.9 million caregivers assisted 7.6 million care recipients. More than half of caregivers reported burden related to caregiving. In a multivariable regression model, caregivers who assisted with more activities of daily living and instrumental activities of daily living, health management tasks, and health system logistics were more likely to experience burden, as were female caregivers, adult child caregivers, caregivers in poor health, caregivers with anxiety symptoms, and those using respite care. Dementia was the only care recipient characteristic associated with burden. CONCLUSION: Caregiver characteristics and provision of caregiving tasks determine caregiver burden more than care recipient characteristics. Absence of an association between type of a care recipient's chronic conditions and burden, except for dementia, suggests that the tasks that caregivers who assist older adults with a variety of health conditions undertake shape the experience of caregiving. 

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Needs and preferences of informal caregivers regarding outpatient care for the elderly: a systematic literature review

Background: Informal caregivers are an essential pillar for ensuring and maintaining the outpatient care of the frail elderly. Due to demographic changes, including an increase in the number of people in need of care as well as changing social structures (full-time employment of women, increasing number of single households, etc.) these informal care structures are fraught by considerable challenges. To support and facilitate informal caregivers in their role of nursing, it is important to identify their preferences, needs, and thus create a preference-oriented system.; Methods: A systematic review was conducted to identify preferences and needs regarding the organization of informal care. The database searches were performed by using EMBASE, Scopus and Dimdi.; Results: A total of 44 studies were included in the present review. Studies from 17 different countries provide broad international perspectives. Besides the preferences for long-term care structure, the following four principal topics were identified: (1) informational needs; (2) support needs; (3) organizational needs, and (4) needs for societal recognition.; Conclusion: To meet the current challenges in the outpatient or home-based care of elders, it is essential to strengthen the role of informal caregivers. Therefore, it is necessary to adopt and further develop informal care structures according to the needs of informal caregivers. However, demographic, financial and cultural aspects of each country need to be considered as these may influence the preferences and needs of informal caregivers.

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Caregivers of older adults with dementia and multiple chronic conditions: Exploring their experiences with significant changes

Family caregiving is considered a social transition as changes in the health of the care recipient create a process of transition for the caregiver when they are more vulnerable to threats to their own health. Family and friend caregivers take on many responsibilities and experience high levels of burden when caring for community-dwelling older adults living with dementia and multiple chronic conditions. However, little is known about the changes they experience in their caring roles or how they cope with these changes. This qualitative descriptive study was part of a larger mixed methods randomized controlled trial evaluating a web-based caregiver support toolkit. Multiple semi-structured phone interviews were conducted with caregivers of older adults with dementia and multiple chronic conditions. Content analysis was used to generate thematic descriptions. Six themes were generated and grouped into two categories. Significant changes experienced by caregivers are described by the following themes: 'everything falls on you - all of the responsibilities,' 'too many feelings' and 'no time for me.' The themes describing how caregivers coped with these changes include: seeking support, self-caring, and adapting their caregiving approach. Study results indicate that caregivers of older adults with dementia and multiple chronic conditions experienced many changes in their caregiving journey resulting in increasing complexity as they tended to the care recipients' declining health and well-being. These caregivers used several creative strategies to cope with these changes. Health care providers should consider both the caregiver and care recipient as clients in the circle of care, and facilitate their linkage with health and community support services to help address the increasing complexity of care needs.

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Intergenerational Ambivalence and Dyadic Strain: Understanding Stress in Family Care Partners of Older Adults

Objectives: The present study used Pearlin, Mullan, Semple & Skaff's (1990) caregiving stress process model as a framework to examine the comparative influence of two stressors: (a) intergenerational ambivalence as a unified construct and (b) dyadic strain, which is one isolated component of intergenerational ambivalence. Methods: Participants were 120 women providing healthcare and medication assistance to an earlier generation family member with physical and/or cognitive impairments. Results: Hierarchical regression confirmed that intergenerational ambivalence explained perceived stress in family care partners, beyond the variance accounted for by other commonly reported stressors such as length of caregiving experience, memory/cognitive and functional impairments of the care recipient, caregiver overload, family conflict and financial strain. Further analyses revealed that examining dyadic strain apart from intergenerational ambivalence may more accurately explain the influence of ambivalence scores on care partners' perceived stress. Conclusions and Clinical Implications: The comparative influence of dyadic strain versus ambivalence suggests that stress-reducing interventions may benefit from a focus on reducing care partners' experiences of negative strain in the dyadic relationship rather than managing ambivalence.

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Influence of caregiver burden on well-being of family member caregivers of older adults

Background: Caregiving to older adults is one of the most important social issues associated with aging. While caregiving provides a suitable care and supportive environment for older adults, changes in the lives of caregiving family members also affect their health. The aim of this study was to examine the effect of care burden on the well-being of family members providing care for older adults.; Methods: The study used a cross-sectional design. The study sample included 363 family caregivers of older adults. Socio-demographic questionnaire form, Burden Interview and Caregiver Well-Being Scale were used as data collection tools. Multiple linear regression analysis was performed to explore the predictors of well-being in the family caregivers of older adults.; Results: The caregiver burden mean score was 32.63 ± 15.72 and Caregiver Well-Being Mean score was 159.38 ± 24.55. Caregiver burden, perceived health status of the older adults, marital status, perceived health status of caregiver and social support of caregiver were found to be statistically significant predictors of well-being in family member caregivers of older adults. Caregiver burden level was found to be the strongest predictor of well-being in the family caregivers of older adults.; Conclusion: Results showed that caregiver burden had an important effect on well-being of the caregiver. For this reason caregiver burden should be considered during interventions for improving well-being in family caregivers of older adults. Findings of our study revealed the necessity of showing special attention to caregivers by healthcare professionals and the importance of conducting interventional studies that aim to reduce caregiver burden in order to promote well-being.

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Self-Compassion, Health Outcomes, and Family Carers of Older Adults: An Integrative Review

Objectives: This review sought to synthesize published evidence about the role of self-compassion on health outcomes for family carers of older adults, to describe the current state of knowledge.; Method: Using an integrative review method that permitted any research design, eight databases were searched. Extensive searching of gray literature sources was also undertaken. Studies included in the review underwent processes of methodological quality assessment (Mixed Methods Appraisal Tool - Version 2011), data extraction, analysis, and syntheses.; Results: Four studies were included: two randomized controlled trials, a descriptive cross-sectional survey, and a qualitative study. There was preliminary evidence to show the potential of self-compassion to help family carers cope and reduce levels of burden. However, efficacy of self-compassion interventions to improve family carer health outcomes could not be determined.; Conclusions: Self-compassion in family carers of older adults is a new and emerging research area, and there is very little published evidence about how self-compassion might be developed to improve health outcomes for family carers.; Clinical Implications: To inform clinical understanding within this population, future quality research is needed, particularly regarding proof-of-concept, moderating effects of carer and care recipient factors, reliability of self-compassion measures, and the development and testing of self-compassion based interventions.

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The imperative of caring for the dependent elderly person

This text presents an overview of aging in Brazil and information that highlights the need to create instruments to deal with the exponential increase of the elderly population, particularly those who lose their physical, cognitive, mental/emotional, and social autonomy. Examples of public policies created by European countries, notably Spain, show how they act to protect the most vulnerable individuals and provide support to their families, especially to the informal caregivers. The whole process of protection for the long-lived is perceived as a form of social solidarity in which the State and sub-national entities, society, the families and the elderly people themselves participate.

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Physical, emotional and social burden of elderly patients' informal caregivers

Objective: Assess the burden and identify the burden-related factors in home-baded informal caregivers of bedridden elderly attended by the Family Health Strategy. Methods: Analytical, cross-sectional study involving 208 informal caregivers. The data were collected between February and July 2017 by applying the characterization script and the Informal Caregiver Burden Assessment Questionnaire. For analysis purposes, the Statistical Package for the Social Science, version 20.0 was used. Descriptive (central trend and dispersion, absolute and relative frequency measures) and inferential (Mann-Whitney and Kruskal-Wallis tests; Spearman correlation test) statistics were applied. Results: The mean total burden score was 71.1 (±26.3). A statistically significant difference was observed in the total burden and domain scores according to the variables: marital status of caregiver, degree of kinship with the elderly and all clinical variables of the caregivers. A positive correlation was registered between the burden and the caregiver's age and between the burden and number of daily hours spent on care. Conclusion: The burden was higher for the partners, caregivers with comorbidities, pain related to the activity performed and caregivers who considered their health as regular.

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Interventions to address burden among family caregivers of persons aging with TBI: A scoping review

Purpose: To capture the scope of literature exploring interventions for caregivers of aging persons with TBI. Methods: A scoping review of peer reviewed literature was conducted in two phases. Phase I: Searching seven databases, two independent raters screened articles using a set of predetermined criteria. Included articles were reviewed, and categorized according to common themes. Phase II: Five stakeholders were engaged in a consultation. A content analysis was performed by extracting statements from each interview using an inductive strategy, and organizing each into themes. Findings: A total of 11 articles were included in the final analysis. Inter-rater reliability was assessed at both the title and abstract search [98.8% agreement; k = 0.3425 (95% CI,.246 to.439), p < .05]; and the full-text review [83% agreement; k = 0.542 (95% CI, 0.340 to 0.745), p < .05] phases. Seven articles identified potential interventions, and four identified and evaluated an intervention. Interventions targeted subjective burden (n = 4) and objective burden (n = 4), with caregiver knowledge and skill development (n = 3) classified as a sub-category of objective burden. Stakeholders overwhelmingly emphasized the need for interventions to reduce objective burden. Implications: Included articles were primarily composed of levels six and seven evidence, suggesting that this literature is in an early stage of development. Future research should emphasize the development and evaluation of interventions to reduce objective burden.

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Geographical proximity and depressive symptoms among adult child caregivers: social support as a moderator

Objectives: This study examined whether geographical proximity is a predictor of depressive symptoms, and whether family and friend support can moderate the relationship between geographical proximity and depressive symptoms. Method: A survey of 557 adult child primary caregivers was conducted in Shanghai, China in 2013. Geographical proximity was measured as a categorical variable: coresidence, short distance (less than 30 minutes' travel time), and long distance (more than 30 minutes' travel time). Family and friend support were assessed using the Multidimensional Scale of Perceived Social Support. Depressive symptoms were evaluated using the Center on Epidemiologic Studies Depression Scale. Multiple regression analyses and interaction terms were used to test the moderating roles of family and friend support. Results: Adult child caregivers who live more than 30 minutes away from care recipients experienced higher depressive symptoms than coresiding caregivers (β =.114, p <.01). Family support (β = −.408, p <.05) and friend support (β = −.235, p <.05) were protective factors that lessened depressive symptoms for long-distance adult child caregivers. Conclusion: This study adds spatial dimension to caregiving literature and extends stress process theory. These findings have important implications for service planning and social support for adult child caregivers.

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Relational aspects of mastery for frail, older adults: The role of informal caregivers in the care process

Frail, older care recipients are often thought of as individuals with a decreased mastery of everyday life skills. Various authors have proposed to acknowledge a relational dimension of mastery, defined as the ability to maintain control over one's life with the help of others. This study explores how frail, older adults experience relational aspects of mastery and the role of their informal caregivers in maintaining these aspects of mastery over the care process. Qualitative interviews (N = 121) were conducted in 2016 with potentially frail, community-dwelling older adults participating in the Detection, Support and Care for Older people: Prevention and Empowerment (D-SCOPE) project. A secondary analysis of 65 interviews reveals that, according to frail, older adults, informal caregivers contribute in various ways to the preservation of their mastery. This differs across the four elements of care: caring about (attentiveness), taking care of (responsibility), care-giving (competence), and care-receiving (responsiveness). However, in some cases, older adults experienced a loss of mastery; for example, when informal caregivers did not understand their care needs and did not involve them in the decision, organisation, and provision of care. A relational dimension of mastery needs to be acknowledged in frail, older care recipients since stimulating mastery is a crucial element for realising community care objectives and person-centred and integrated care.

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Caring for the elderly at work and home: Can a randomized organizational intervention improve psychological health?

Although job stress models suggest that changing the work social environment to increase job resources improves psychological health, many intervention studies have weak designs and overlook influences of family caregiving demands. We tested the effects of an organizational intervention designed to increase supervisor social support for work and nonwork roles, and job control in a results-oriented work environment on the stress and psychological distress of health care employees who care for the elderly, while simultaneously considering their own family caregiving responsibilities. Using a group-randomized organizational field trial with an intent-to-treat design, 420 caregivers in 15 intervention extended-care nursing facilities were compared with 511 caregivers in 15 control facilities at 4 measurement times: preintervention and 6, 12, and 18 months. There were no main intervention effects showing improvements in stress and psychological distress when comparing intervention with control sites. Moderation analyses indicate that the intervention was more effective in reducing stress and psychological distress for caregivers who were also caring for other family members off the job (those with elders and those "sandwiched" with both child and elder caregiving responsibilities) compared with employees without caregiving demands. These findings extend previous studies by showing that the effect of organizational interventions designed to increase job resources to improve psychological health varies according to differences in nonwork caregiving demands. This research suggests that caregivers, especially those with "double-duty" elder caregiving at home and work and "triple-duty" responsibilities, including child care, may benefit from interventions designed to increase work-nonwork social support and job control.

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Caring by telecare? A hermeneutic study of experiences among older adults and their family caregivers

Aims and Objectives: To obtain a deeper understanding of the persistent use of telecare for older adults and their family caregivers.; Background: Telecare is seen as part of the solution in home care services for ageing in place. Previous studies have shown that telecare is a complex intervention, and there is still a poor understanding of older adults' and their family caregivers' experience with the use of telecare.; Design: This study used a qualitative hermeneutic research approach.; Method: Interviews were conducted with 18 older adults and follow-up interviews were conducted with 15 participants after 5-6 months of use. In addition, interviews were conducted with seven close family caregivers. The COREQ checklist was used.; Results: The older adults expressed increased safety, security and independence. Although some of them experienced challenges, they continued to use the services. Furthermore, the findings revealed needs that telecare could not cover. Family caregivers reported that telecare eased their concern for a time. However, they felt increased responsibility which led to ambivalent feelings between wanting to comply with the older adults' desire to live at home and the stress and concern this caused.; Conclusion: Telecare does improve care offered by home care services. However, it must be considered in the context of assistance and other measures and be provided in response to each individual's specific needs. Family caregivers may benefit from telecare, but telecare may also add to their care burden.; Relevance To Clinical Practice: There is a need for increased knowledge and information about telecare and for follow-up from home care services. Family caregivers are important for promoting sustainable use, but a support system and better cooperation with home care services is needed.

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Understanding Caregiver Quality of Life in Caregivers of Hospitalized Older Adults With Cancer

BACKGROUND/OBJECTIVES: Caregivers of older adults with cancer assist both with cancer care and other health issues, which may make them vulnerable to consequences of caregiving. Hospitalization may represent a time when a caregiver's ability to provide care at home is exceeded. We sought to characterize caregivers of hospitalized older adults with cancer, determine their quality of life (QOL), and identify factors associated with caregiver QOL. METHODS: Patients (n = 100), aged 65 years and older, with an unplanned hospitalization and their caregivers were included. Caregivers completed a questionnaire about their health, social support, caregiving relationship, QOL (Caregiver Quality of Life Index‐Cancer [CQOLC] tool), and patient function. Patient medical history was obtained via chart review. The association between patient, caregiving, and caregiver factors and CQOLC was determined using multivariate linear regression. RESULTS: Most patients (73%) had metastatic/advanced disease, and 71% received treatment for their cancer within 30 days of hospitalization. Median Karnofsky Performance Status (KPS) was 60%, and 89% required help with instrumental activities of daily living, as reported by caregivers. Median caregiver age was 65 years (range = 29‐84 years). The majority (60%) had no major comorbidities and rated their health as excellent/good (79%), though 22% reported worsening health due to caregiving. Caregivers had a median Mental Health Inventory‐18 score of 70 (range = 0–97), a median Medical Outcomes Study (MOS)‐social activity score of 56 (range = 0–87.5), and a median MOS‐Social Support Survey score of 68 (range = 0–100). Caregivers provided a median of 35 hours of care per week (range = 0‐168 hours of care per week). Mean CQOLC was 84.6 ± 23.5. Lower caregiver QOL was associated with poorer caregiver mental health, less social support, and poorer patient KPS (P < .05). CONCLUSION: Caregivers of hospitalized older adults with cancer are older but generally in good health. Those with poorer mental health, less social support, and caring for patients with poorer performance status are more likely to experience lower QOL. 

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Interdependence in Health and Functioning Among Older Spousal Caregivers and Care Recipients

Older spousal caregiving relationships involve support that may be affected by the health of either the caregiver or care recipient. We conducted a longitudinal analysis using pooled data from 4,632 community-dwelling spousal care recipients and caregivers aged ⩾50 from the 2002 to 2014 waves of the Health and Retirement Study. We specified logistic and negative binomial regression models using lagged predictor variables to assess the role of partner health status on spousal caregiver and care recipient health care utilization and physical functioning outcomes. Care recipients' odds of hospitalization, odds ratio (OR): 0.83, p <.001, decreased when caregivers had more ADL difficulties. When spouses were in poorer versus better health, care recipients' bed days decreased (4.69 vs. 2.54) while caregivers' bed days increased (0.20 vs. 0.96). Providers should consider the dual needs of caregivers caring for care recipients and their own health care needs, in adopting a family-centered approach to management of older adult long-term care needs.

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The Perceived Caregiver Burden Among Turkish Family Caregivers Providing Care for Frail Older Adults

Purpose: The older population has reached to 8.5%, and the prevalence of frailty is reported as 39.2% in Turkey. The purpose of the study was to assess caregiver burden in families who care for frail older adults in Turkish culture.; Method: This descriptive study was conducted in Turkey between June and October 2017. Frail older adults who had no severe cognitive impairment were included. Data were measured using the Older Adult Information Form, Edmonton Frailty Scale, Caregiver Information Form, and Zarit Burden Interview.; Results: In total, 131 older person/caregiver dyads were analyzed; the Zarit Burden Interview mean score was 37.59 ± 18.20. Caregivers with less education and providing care more than 8 hours experienced a higher burden ( p < .05). The severity of frailty significantly correlated with the caregiver scores ( R = .36, p < .01).; Conclusion: The caregiver burden in Turkish family caregivers was found mild to moderate and correlated with the degree of frailty. Policymakers should focus on culture-specific formal caregiver services.

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Estimating Informal Caregiving Time from Patient EQ-5D Data: The Informal CARE Effect (iCARE) Tool

Background: Families and friends provide a considerable proportion of care for patients and elderly people. Caregiving can have substantial effects on caregivers' lives, health, and well-being. However, because clinical trials rarely assess these effects, no information on caregiver burden is available when evaluating the cost effectiveness of treatments. Objective: This study develops an algorithm for estimating caregiver time using information that is typically available in clinical trials: the EQ-5D scores of patients and their gender. Methods: Four datasets with a total of 8012 observations of dyads of caregivers and a gamma model with a log-link estimated with the Bayesian approach were used to estimate the statistical association between patient scores on the EQ-5D-3L dimensions and the numbers of hours of care provided by caregivers during the previous week. The model predicts hours of care as mean point estimates with 95% credible intervals or entire distributions. Results: Model predictions of hours of care based on the five EQ-5D dimensions ranged from 13.06 (12.7-14.5) h/week for female patients reporting no health problems but receiving informal care to 52.82 (39.38-66.26) for male patients with the highest level of problems on all EQ-5D dimensions. Conclusions: The iCARE algorithm developed in this study allows researchers who only have patient-level EQ-5D data to estimate the mean hours of informal care received per week, including a 95% Bayesian credible interval. Caregiver time can be multiplied with a monetary value for caregiving, enabling the inclusion of informal care costs in economic evaluations. We recommend using the tool for samples that fall within the confidence intervals of the characteristics of our samples: men (age range 47.0-104.2 years), women (age range 55-103 years).

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Including and Training Family Caregivers of Older Adults in Hospital Care: Facilitators and Barriers

Background: Despite the role caregivers play in the delivery of care, the interactions and training methods used with caregivers during an inpatient stay are not clear.; Purpose: The purpose was to examine interactions and training methods used with caregivers during hospital care.; Methods: A mixed-methods case study was conducted. Observations were summarized and interviews were analyzed using thematic analysis.; Results: The frequency of caregiver engagement varied at different points in the care process but was highest among observations during the stay care point. Providers were most commonly using written and verbal instructions to train caregivers. Three themes emerged from the interviews and were described to be both facilitators and barriers to caregiver involvement: experience, time, and relationship.; Conclusions: High-quality person and family-centered care depends upon coordinated efforts among health care systems, providers, patients, and caregivers. Future caregiver initiatives should aim to decrease disengagement, increase assessment, and broaden the use of training methods.

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Shifts in Family Caregiving--and a Growing Care Gap

As baby boomers approach old age, many factors may be driving a growing divide between the demand for family caregivers and the number of available caregivers. This article highlights trends in family caregiving and changing patterns of family life that challenge the family's capacity to carry out its traditional functions in long-term services and supports (LTSS), describes the high cost of LTSS (including out-of-pocket spending), illuminates the future care gap, and explains the implications of these trends in the context of providing and paying for LTSS.

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Paid Family Leave: An Emerging Benefit for Employed Family Caregivers of Older Adults

As our population ages, the ability to take time off to care for an ill family member or close friend without losing income or a job is a growing social, health, and economic issue for American families. Therefore, the need for paid family leave policies for workers with caregiving responsibilities is an important topic for employers and policymakers, in the clinical care of older adults, and at kitchen tables across the United States. Despite this growing need, paid family leave is not available to most workers, and there is no national paid family leave policy. Health care and social service providers have a role in ensuring that family members of their patients with a serious health condition or disability are aware of the potential availability of paid family leave benefits in the states and businesses that provide them. Building a better system of care for older adults means changes not only in health care settings and in long-term services and supports, but in workplaces too. This article describes the challenges faced by workers with family caregiving responsibilities, explains why paid family leave matters, indicates which states have adopted these protections, and reviews research on existing paid family leave policies. Finally, actions by clinicians and other stakeholders are offered to advance awareness about paid family leave benefits, including coverage for workers with care responsibilities for older people.

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Caring for the seniors with chronic illness: The lived experience of caregivers of older adults

Background Caregivers of the elderly with chronic illnesses are exposed to the burden associated with their caregiving activities. This study described the lived experience of caregivers of older adults in Nigeria. Methods A qualitative design guided by interpretive phenomenology informed the design of the research, whereby 15 in-depth interviews were conducted with caregivers of older adults with chronic illnesses. The interview sessions were audiotaped and transcribed verbatim and analysed using constant comparison analysis method. Results Fifteen caregivers, from different parts of Osun State, Nigeria, took part in the in-depth interviews. The caregivers were aged between 19 and 70 years, ten were women, five of them had secondary education, seven were self-employed and six were in a spousal relationship. The study uncovered four interrelated themes with explanatory subthemes—commitment to preservation of life (managing challenges associated with daily routine, problem with mobility, bathing and grooming, feeding, and problem with hygiene) (ii) denial (refusal to accept that burden exists) , other things suffer (disruption of family process, suffering from poor health and social isolation), (iv) reciprocity of care (pride in caregiving, caregiving as a necessity and not by choice, and law of karma). Conclusion This study provides insight into the burden of care of older adults with chronic illness. Caregivers' commitment to preserving life makes them provide assistance whose performance even run contrary to their own wellbeing. Intervention programme should be designed to support the caregivers thereby improving their wellbeing. 

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Burden and Coping Ability of Individuals Caring for Chronically Ill Older Adults in Nigeria: A Mixed Methods Study

Family members play key roles in the care of older adults with chronic illness. However, little is known about the negative consequences of caregiving in Sub-Sahara Africa. The current study examined the influence of caregivers' burden and coping ability on the health-related quality of life of caregivers of older adults with chronic illness. An exploratory sequential mixed methods study was conducted among 16 family members. Findings showed that caregivers experienced severe burden, coped moderately with the burden, and had poor quality of life. Furthermore, directed content analysis of the in-depth interviews uncovered six major themes: (a) Being Pulled in Opposite Directions, (b) Experiencing Poor Health, (c) Receiving Support From Family and Friends, (d) Turning to God for Help, (e) Seeking Relief for Aching Bodies, and (f) Seeking Remedies for Sleeplessness. The current findings may have implications for designing programs that aim to improve the well-being of caregivers.

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Outcomes of a Problem-Solving Medication Management Intervention for Informal Caregivers

Older adults with memory loss often require assistance from caregivers to manage their medications. This study examined the efficacy of a problem-solving-based intervention focused on caregiver medication management, problem solving, self-efficacy, and daily hassles. Caregiver health-related quality of life (HRQoL) and patient health care utilization were secondary outcomes. Totally, 83 patients (age 79.9±8.8 years) and their informal caregivers (age 66.9±12 years, female 69.9%, White 85.5%) were randomized; data collection occurred at baseline, 8, 16, and 24 weeks. Linear mixed modeling showed significant decreases in medication deficiencies which were sustained over time. No significant changes in caregiver problem solving, daily hassles, or patient health care utilization occurred between groups or over time. In addition, caregiver self-efficacy and mental HRQoL decreased in both groups. Physical HRQoL decreased in the intervention group, yet increased in the usual care group. Future research should investigate these outcomes in larger and more diverse samples.

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Informal and formal care preferences and expected willingness of providing elderly care in Germany: protocol for a mixed-methods study

Introduction: In Germany, the number of elderly people in need of care is expected to increase from 2.4 million in 2015 to 3.2 million in 2030. The subsequent rise in demand for long-term care facilities is unlikely to be met by the current care structures and available staff. Additionally, many Germans still prefer to be cared for at home for as long as possible. In light of recent changes, such as increasing employment rates of women and growing geographical distances of family members, informal caregiving becomes more challenging in the future. The aim of this study is to explore preferences for informal and formal care services in the German general population, as well as the expected willingness of providing elderly care.; Methods and Analysis: A mixed-methods approach will be used to explore care preferences and expected willingness of providing elderly care in the German general population. A systematic literature review will be performed to provide an overview of the current academic literature on the topic. Qualitative interviews will be conducted with informal caregivers, care consultants and people with no prior caregiving experiences. A labelled discrete choice experiment will be designed and conducted to quantitatively measure the preferences for informal and formal care in the German general population. People between 18 and 65 years of age will be recruited in cooperation with a (regional) statutory health insurance (AOK Lower Saxony). A mixed multinomial logit regression model and a latent class finite mixture model will be used to analyse the data and test for subgroup differences in care preferences.; Ethics and Dissemination: The study has been approved by the Committee for Clinical Ethics of the Medical School in Hannover. Data will be treated confidential to ensure the participants' anonymity. The results will be discussed and disseminated to relevant stakeholders in the field.; Trial Registration Number: DRKS00012266.

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The Experience of Adult Children Caregiving for Aging Parents

When the normal progression of life for an aging person is interrupted by a decline in physical and or mental abilities, adult children are often suddenly faced with assuming care of their parent(s). Currently, adult child caregivers of aging parents work up to 100 hours per month at caregiving. Most existing literature is focused on informal caregivers, which can consist of spouses, relatives, and friends' caregiving for persons with debilitating illnesses. Despite the amount of time dedicated to parental caregiving, little is known about the experience of this exclusive caregiver group. The aim of this study was to explore and describe the experience of adult children caregiving for aging parents at any stage of health. A qualitative phenomenological approach was used to interview six daughters and one daughter-in-law. Themes were identified and presented through the use of narratives and poetry. The participants expressed they felt unprepared for caregiving and their culture had a direct impact on the expectations of caregiving. A myriad of unpleasant emotions and loss were voiced, yet their outlooks remained extremely positive. The overall health of adult child caregivers needs to be supported to prepare them for what lies ahead with caregiving. Caregivers report their loved one(s) required several hospitalizations, which lead to performing medical/nursing tasks at home. Nursing then has a unique opportunity during discharge preparation, to identify those who need community, state, and faith-based services. Replication is needed to address the limitation of the number of participants, ethnic, and gender diversity. 

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Understanding the integration of family caregivers in delirium prevention care for hospitalized older adults: a case study protocol

Aim: To understand family caregiver involvement in delirium prevention care for older adults hospitalized for orthopedic surgery hospitals and family caregiver integration by nurses.; Design: Multiple-case study.; Methods: The model of Care Partner Engagement was selected as theoretical framework. Eight cases will comprise an older adult hospitalized a family caregiver and a ward nurse. They will be recruited with a non-probability sampling on two orthopedic surgery wards in two hospitals. Semi-structured interviews with participants will be audiotaped. Sociodemographic data will be collected. These data, researcher field notes and interview transcripts will be subjected to within- and across-case thematic analysis. Regional ethics committee approved the study protocol in August 2018.; Discussion: The study will allow surgical nursing teams to gain a better understanding of the issues and possibilities regarding family caregiver integration in delirium prevention care for older adults.; Impact: Integration of family caregivers in care to prevent older adults' delirium is a challenge for nurses. In practice, this study will allow to gain a better understanding of the integration of family caregivers in care to prevent older adults' delirium, the factors that influence it and the ways to improve it. In research, results will be used to develop an intervention whose aim would be a better integration of family caregivers into delirium prevention care that can be tested in the future. 

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We Are Caregivers: Social Identity Is Associated with Lower Perceived Stress among Rural Informal Caregivers

Informal caregivers often experience high stress levels with little support, especially in rural settings. With a mixed-methods approach, this research explored experiences of rural informal caregivers, including how social identification as a caregiver, social interactions, and formal and informal coping support related to perceived stress. Major focus group themes (n = 8) included lacking available services, balancing challenges, unmet practical needs, and strong community identity. Survey data (n = 22) revealed that perceived coping support (e.g., having someone to turn to), social interactions, and caregiver identity (e.g., perceiving the role as important to one's self-concept) were associated with lower life upset stress, but only caregiver identity was associated with managing the personal distress and negative feelings associated with caregiving stress. Results suggest that, although available rural services may fall short, other options might alleviate caregiver stress, including facilitating access to coping support, encouraging social interactions, and enhancing caregiver social identity.

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Needs Assessment for Turkish Family Caregivers of Older Persons with Cancer: First-Phase Results of Adapting an Early Palliative Care Model

Background: Although palliative care is expanding globally for patients with serious illness, Turkey has not had widespread integration of early concurrent oncology palliative care. Hence, adapting and testing models of concurrent oncology palliative care for Turkish patients is imperative. Furthermore, it is critical that these care models also address the needs of family caregivers.; Objective: To assess needs and elicit suggestions that would inform the adaptation of the ENABLE (Educate, Nurture, Advise, Before Life Ends) evidence-based early palliative care model for Turkish family caregivers of older persons with cancer.; Methods: Formative evaluation study. Semi-structured interviews were conducted with 25 primary family caregivers of older individuals with cancer. Thematic analyses yielded themes in four domains: meaning of caregiving, effect of caregiving, education and consulting needs, and preferences about the delivery of the ENABLE model of palliative care support.; Results: Caregivers described the impact of the cancer on their daily lives and responsibilities in the areas of physical, psychological, work, social, and family life. Caregivers emphasized their needs for information about symptoms, physical care, cancer pathology, and prognosis. Regarding the ENABLE model of early concurrent palliative care, participants wanted encounters to be in-person with educational material support that was simple and focused on disease information (prognosis, medication, handling emergency situations), psychological support, caring, nutrition, and acquiring community services.; Conclusion: Themes from this study will be used to modify the ENABLE intervention protocol for future pilot and efficacy testing in Turkish caregivers.

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Is training for informal caregivers and their older persons helpful? A systematic review

Background: The steady increase in the number of people suffering from chronic diseases and increasing life expectancy raises new demands on health care. At the same time, the need for informal caregivers is increasing. This study aims to perform a systematic review of the methodologies used to identify effect of different types of training on informal caregivers and their older persons.; Methods: MEDLINE (PubMed), CINAHL and Ovid were searched from December 2016 and April 2017. The following keywords were used; "informal caregiver", "training" "elderly", older persons". Identified publications were screened by using the following inclusion criteria; systematic reviews, randomized controlled trials, prospective cohort and multicentre studies, English language full text journals, samples or interventions that included caregivers of older persons and published in last 10 years.; Results: Twenty four studies (12 randomised control trials, 8 intervention studies and 4 systematic reviews) were included. Most of the randomized controlled trials involved both caregivers and elderly. Pretests and post-tests were used in intervention studies (5 out of the 8 studies). ICT-based, psychosocial interventions on family caregivers' education program for caregivers were applied. Caregivers following a supportive educative learning had a significantly better quality of life.; Conclusions: The findings of this systematic review suggest that support interventions for caregivers can be effective in reducing caregivers' stress, with a consequent improvement of the quality of care. However, results are based on relatively small studies, reporting somewhat controversial findings supporting the need to perform further research in this field.

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Does Caregiving Strain Increase as Patients With and Without Dementia Approach the End of Life?

Context. Family caregivers play critical and demanding roles in the care of persons with dementia through the end of life. Objectives. The objective of this study was to determine whether caregiving strain increases for dementia caregivers as older adults approach the end of life, and secondarily, whether this association differs for nondementia caregivers. Methods. Participants included a nationally representative sample of community-living older adults receiving help with self-care or indoor mobility and their primary caregivers (3422 dyads). Older adults' death within 12 months of survey was assessed from linked Medicare enrollment files. Multivariable logistic regression was used to assess the association between dementia and end-of-life status and a composite measure of caregiving strain (range: 0–9, using a cut point of 5 to define “high” strain) after comprehensively adjusting for other older adult and caregiver factors. Results. The prevalence of dementia in our sample was 30.1%; 13.2% of the sample died within 12 months. The proportion of caregivers who experienced high strain ranged from a low of 13.5% among nondementia, non–end-of-life caregivers to a high of 35.0% among dementia caregivers of older adults who died within 12 months. Among dementia caregivers, the odds of high caregiving strain were nearly twice as high (aOR = 1.94, 95% CI: 1.10–3.45) for those who were assisting older adults nearing end of life. Among nondementia caregivers, providing care near the end of life was not associated with high strain. Conclusion. Increased strain toward the end of life is particularly notable for dementia caregivers. Interventions are needed to address the needs of this population.

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Fear, Defensive Strategies and Caring for Cognitively Impaired Family Members

One topic rarely addressed in the literature on older adults and interpersonal violence is the violence that can be experienced by family carers in relationship with a person living with cognitive impairment. This violence tends to remain hidden and is rarely framed as intimate partner violence. We examine how situations of intimidation and violence invoked fear in family carers and how they interpreted and reacted to these circum- stances. Interview and diary data were collected from family members who had previously or were currently experiencing some form of aggression in caring for someone with cognitive impairment or dementia. Drawing on discussions of fear and applying the analytic lens of defensive strategies, we explore how these carers responded to situations of intimidation and violence.

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Psychological outcomes of eCare technologies use for informal carers: A scoping study

Background The use of eCare technologies could address some of the challenges related to demographic changes and decreased care potential. However, little is known about eCare technologies' potential in relation to the psychological outcomes for informal carers. Research aim This study aims to provide an overview of the psychological outcomes of eCare technologies use for informal carers. Methodology A scoping study was done, where peer reviewed papers, written in English, investigating the use of eCare technologies in informal care and their psychological outcomes on informal carers, were included. Non-scientific studies, and studies which focused on psychological counselling or training through the Internet or phone, were excluded. The data search was conducted in Academic search complete, Scopus, ProQuest and Science Direct databases, from 12 October 2017 to 17 October 2017 and included 16 studies published since 2013. Results Six psychological outcomes were identified (peace of mind, reassurance, anxiety, depression, stress and burden). Out of those psychological outcomes, positive outcomes of eCare technologies use for informal carers were counted 37 times and negative outcomes only eight, suggesting a positive prevalent pattern of eCare technologies use for informal carers. Conclusion The outlined interplay between the positive and negative psychological outcomes suggest that the use of eCare technologies in informal care warrants further research, for instance whether the eCare technologies actually fulfil older people and informal carers' needs. 

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Older adults neglected by their caregivers: vulnerabilities and risks identified in an adult protective services sample

Purpose Using a risk and vulnerability framework, the purpose of this paper is to describe the characteristics of older adults that Adult Protective Services (APS) substantiated for neglect by caregivers, their caregivers and the interrelationships between them. Design/methodology/approach The paper uses a qualitative study of 21 APS case record narratives using a template analysis. Findings Neglect related to withholding or refusing medical care was the most common. The older adults had multiple health conditions and geriatric syndromes. Caregivers had difficulties in carrying out caregiving role due to health and mental health issues, work responsibilities and lack of insight into older adults’ needs. The refusal to access or accept services by both the older adults and the caregivers was a predominant theme. Research limitations/implications The sample size was small, limited to one geographical area, and non-representative of all neglect cases. The data were extracted from written case narratives and not directly from the older adults and their family members. Case records varied in the case detail provided. Practical implications To protect vulnerable older adults and improve quality of life, APS involvement in cases of caregiver neglect needs strategies to get people to accept help and access services to address multiple health and psychosocial problems for both older adult victims and their caregivers. Originality/value This study provides in-depth information on APS cases involving caregiver neglect that add to understanding of this complex problem and points to areas for further study.

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Unmet Support Needs of Informal Caregivers of Older Adults

Due to projected growth of the 65-and-older population and concerns of an impending care gap, reliance on informal caregivers is expected to increase. Improving support for informal caregivers is viewed as a national priority, yet research related to the unmet support needs of informal caregivers is limited. The purpose of this cross-sectional correlational study was to examine predictive relationships between contextual factors (caregiving relationship and type of illness) and environmental factors (rurality) and the unmet support needs (classes, service access, support groups, counseling, and respite) of informal caregivers of older adults. The theoretical framework was Bronfenbrenner’s ecological systems theory. Archival data were drawn from the 2015 Behavioral Risk Factor Surveillance System optional caregiver module dataset provided by the Centers for Disease Control and Prevention. Findings from multiple logistic regression analysis revealed that spousal caregivers had 42.7% lower odds than adult child caregivers of reporting unmet support needs related to service access. Dementia caregivers had 2.05 times higher odds of reporting unmet support needs of counseling, 1.31 times higher odds of reporting unmet support needs related to service access, and 1.91 times higher odds of reporting unmet support needs for respite care, relative to other caregivers. Caregivers residing in a suburban county had 28.7% lower odds and caregivers not residing in a metropolitan statistical area (MSA) had 30.5% lower odds of reporting unmet support needs related to service access, relative to caregivers residing in the center city of an MSA. Health care leaders and policymakers may use the findings to distribute resources and tailor interventions to better meet the needs of informal caregivers of older adults.

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Eldercare and Childcare: How Does Caregiving Responsibility Affect Job Discrimination?

Despite rising legal claims, little research has examined discrimination against job applicants or employees because of their family caregiving responsibilities. Across three studies, we examine discrimination in hiring and starting salary decisions among equally qualified job applicants based on their elder, child, or sandwiched caregiving responsibilities. In study 1, primary caregiving parents were less likely to be hired, were offered lower salaries, and were rated as less competent, committed, available, and agentic, compared to non-primary caregiving parents. In study 2, primary child and elder caregivers were less likely to be hired and received lower salaries, and they were evaluated more negatively on job-related factors than non-caregivers, especially if they were female. In study 3, primary sandwiched caregivers (i.e., those responsible for both elder and child care) were less likely to be hired and were given lower salaries than primary child caregivers in a male-dominated job. Sandwiched caregivers were evaluated more negatively than other caregivers in both female- and male-dominated jobs.

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Employed Caregivers’ Response to Family-Role Overload: the Role of Control-at-Home and Caregiver Type

Drawing from role theory, stress and coping, and caregiving literatures, this paper develops a model of family-role overload involving two forms of caregiver burden (subjective, objective) and two types of maladaptive changes in employee behavior (at work, personal), and hypothesizes that caregiver type (eldercare-only vs. sandwich) moderates all paths in the model. Partial Least Squares structural equation modeling (SEM) supported all hypothesized direct paths. Contrary to our hypotheses, data analysis showed two positive relationships (i.e., objective caregiver burden to family-role overload, family-role overload to maladaptive changes in personal behavior) were stronger for those in the eldercare-only sample than for those in the sandwich sample. Post hoc analysis revealed five significant gender differences in the relationships included in our model. This study contributes to work–family theory by reinforcing the need to consider both caregiver type and gender when researching the challenges faced by employees trying to balance work and caregiving.

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Eldercare and Work Among Informal Caregivers: A Multidisciplinary Review and Recommendations for Future Research

Although research on eldercare and work has burgeoned in recent years, current literature is lacking an integrative model or framework to summarize existing findings and guide future research. The purpose of this article is to synthesize prior empirical research regarding eldercare among informal caregivers who must balance care with employment. We propose a conceptual model to serve as an organizing framework to understand eldercare and work. More specifically, our model includes predictors and outcomes that are grouped in terms of individual, family, caregiver relationships, work, and societal factors related to elder caregiving and work. We highlight and discuss key factors that mediate and moderate the relations between eldercare and its associated outcomes at multiple levels, including employees, their families, organizations for which caregivers work, and society as a whole. Finally, we provide methodological and substantive recommendations to guide future research.

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Formal Care of the Elderly and Health Outcomes Among Adult Daughters

Health-care expenditures and the demand for caregiving are increasing concerns for policy makers. Although informal care to a certain extent may substitute for costly formal care, providing informal care may come at a cost to caregivers in terms of their own health. However, evidence of causal effects of care responsibilities on health is limited, especially for long-term outcomes. In this paper, we estimate long-term effects of a formal care expansion for the elderly on the health of their middle-aged daughters. We exploit a reform in the federal funding of formal care for Norwegian municipalities that caused a greater expansion of home care provision in municipalities that initially had lower coverage rates. We find that expanding formal care reduced sickness absence in the short run, primarily due to reduced absences related to musculoskeletal and psychological disorders. In general, we find no effects on long-term health outcomes.

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Collaborative story production with bereaved family carers of people who died in advanced age

Purpose Is collaborative story production (CSP) a useful method to collaborate with bereaved families to record their reflections on the end of life circumstances and care of people of advanced age? The paper aims to discuss this issue. Design/methodology/approach Drawing from Te Pākeketanga, a bicultural study involving 58 bereaved Māori and non-Māori families on behalf of 52 older relatives, the authors describe the CSP method. Researchers and participants co-created personalised written stories about the older person and their end of life experiences, supported with photographs of family, friends and memorabilia. The authors aimed to uplift the status of the older person and their family by tangibly reflecting the significance and magnitude of what had been shared and to strengthen the research analysis.Findings CSP supported member checking, promoted a robust understanding of participants’ narratives and increased the trustworthiness of data and strengthened the Kaupapa Māori and social constructivist analysis. However, some participants experienced difficulty revisiting painful memories when reading their story. CSP took longer than anticipated, was labour intensive and required a highly skilled and resourced team to ensure participants benefitted. Originality/value Using the CSP method with a bicultural cohort of bereaved families who had provided care to someone over the age of 80 was very helpful in assisting the researchers to gather narrative information and present it back to participants in a story format for their comment and feedback. The method contributed a useful way to partner with bereaved family caregivers following the death of an older family member. The authors needed a way to record the participants’ narratives of the older person’s end of life circumstances and end of life care experiences. This was very important, particularly for grieving families and indigenous families who may have felt vulnerable engaging with research, and with the research processes. The approach provided a helpful and non-intrusive member-checking process. The unique bicultural study approach deliberately utilised the CSP method to assist the researchers to work safely with bereaved families as the participants reflected upon and explored not only the end of life circumstances of the older person, but they also focused on the “death” and their own bereavement experiences. CSP also provided a helpful member-checking method; the authors were working with highly sensitive information and wanted to ensure that the authors as researchers understood and interpreted the families’ narrative data correctly, according to their perspectives.

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Family Caregivers' Experiences of Within-Hospital Handoffs for Older Adults in Acute Care

Family caregivers' experiences during within-hospital handoffs between acute care units are not well understood. Qualitative description methodology was employed to describe family caregivers' experiences during their loved ones' handoffs. Semistructured interviews were conducted with 10 caregivers of hospitalized older adults. Three themes emerged: Lack of care coordination, Muddling through handoffs alone, and Wariness toward the care delivery system. Findings can help clinicians shape their interactions with caregivers to maximize their involvement in post–hospital care.

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Family Caregivers of Older Adults, 1999–2015: Trends in Characteristics, Circumstances, and Role-Related Appraisal

Purpose of Study To assess trends in family caregiving between 1999 and 2015. Design and Methods We construct nationally representative profiles of community-dwelling older adults receiving help with self-care or indoor mobility and their "primary" family or unpaid caregiver using the 1999 and 2004 National Long Term Care Survey, 2011 and 2015 National Health and Aging Trends Study, and linked caregiver surveys. Trends are examined. Results Older adults receiving help were incrementally younger, more racially diverse, and better educated in 2015. Primary caregivers overwhelmingly continued to be spouses and adult children. Arrangements were increasingly 4 years or longer in duration (shifting from 44.8% in 1999 to 60.5% by 2015). On average, primary caregivers provided about or in excess of 30 hr per week at all four time points. Spouses provided fewer hours of care, were twice as likely to work, and half as likely to report substantial emotional, physical, and financial difficulty due to caregiving in 2015 than 1999. Adult children provided comparable hours of care to a more impaired population; a similar proportion reported substantial caregiving-related difficulty at each time. Use of respite care nearly doubled from 8.5% in 1999 to 15.7% in 2015. Dementia caregivers were less likely to report substantial physical and financial difficulty and more likely to use respite care in 2015 than 1999. Implications Family caregivers' circumstances generally improved during the 16-year period. Results diverge from prevailing concerns regarding the state of family caregiving and demonstrate the importance of longitudinally monitoring trends in late-life family caregiving.

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Seeing and Supporting LGBT Older Adults' Caregivers and Families

The article focuses on the role of biological or legal family members of lesbian, gay, bisexual, and/or transgender (LGBT) older adults, in providing better care, comfort and safety, and talks of nurses to develop trust to recognize and communicate, and provides chart on questions to be asked.

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Caregiving to Older Adults: Determinants of Informal Caregivers’ Subjective Well-being and Formal and Informal Support as Alleviating Conditions

Objectives In response to concerns about the sustainability of health care systems that increasingly rely on informal care, we first investigate explanations of informal caregivers’ subjective well-being: primary stressors (care-receivers’ cognitive impairment, functional disability, and problem behavior), primary appraisal (hours of informal caregiving), and secondary appraisal (burden). Second, we investigate the extent that formal (professional home care) and informal support (from other caregivers/volunteers and from family/friends) alleviate well-being losses due to informal care provision. We modified the stress–appraisal model to explicitly include buffering effects of support. Method We analyzed 4,717 dyads of Dutch informal caregivers and their older care-receivers from the Older Persons and Informal Caregivers Survey Minimum DataSet with multilevel techniques. Results Caregivers’ subjective well-being was directly correlated with burden, hours of informal caregiving, and problem behavior of care-receivers. It was indirectly correlated with care-receivers’ cognitive impairment and functional disability. Formal and informal support weakened the positive relationship between primary stressors and caregiving hours. Discussion Modification of the stress–appraisal model appears useful as it identifies which sources of support buffer at which stages of the stress process. Findings suggest that cutbacks in formal/professional care may aggravate negative well-being outcomes of informal caregiving and compromise informal caregivers’ labor market participation.

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Parental health limitations, caregiving and loneliness among women with widowed parents: longitudinal evidence from France

We investigate how daughters’ feelings of loneliness are impacted when widowed parents develop health limitations, and when daughters take on personal care tasks in response. Using longitudinal data from daughters of widowed parents drawn from the French Family and Intergenerational Relationships Study (ERFI, 1485 observations nested in 557 daughters), we assess (a) whether health limitations of widowed parents are associated with daughters’ feelings of loneliness regardless of whether or not daughters provide personal care and (b) whether there is an effect of care provision on loneliness that cannot be explained by parental health limitations. Fixed effect regression analyses show that widowed parents’ health limitations were associated with raised feelings of loneliness among their daughters. No significant additional effect of providing personal care to a widowed parent was found. Prior research on the impact of health limitations of older parents on the lives of their adult-children has focused mostly on issues related to informal caregiving. Our findings suggest that more attention to the psychosocial impact of parental health limitations—net of actual caregiving—on adult children’s lives is warranted.

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Distress in informal carers of the elderly in New Zealand

Aims: Informal care, which is unpaid and often provided by family and friends, is the primary source of aged care in New Zealand. In addition to financial costs there are known psychological costs of being a carer, including poor mental health.; Methods: This research aimed to interview a group of New Zealand carers and describe their rates of depression and anxiety, their motivations for providing care, costs of care and their experience of aggression. Interviews used standardised questions and were conducted over the phone.; Results: Results are reported from interviews of 48 carers and suggest this group have elevated symptoms of depression and anxiety. Most of the carers are partners or children of the carees and likely do the caring out of love. Unpaid family carers experience low levels of aggression. Carers reported personal and social restriction, and physical and emotional health the most burdensome aspect of being a carer.; Conclusions: Carers of the elderly in New Zealand show elevated levels of distress. Higher levels of emotional support are needed for New Zealand carers. If the health system continues to rely on unpaid carers more should be done to support them.

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Family assessment of elderly patients with liver disease

Objective: to analyze the structure, development and operation of families of elderly patients with liver disease. Method: this is a qualitative-field study, which used the Calgary Family Assessment Model. The study had as its backdrop of research a philanthropic hospital. The study population consisted of five families of elderly hospitalized patients with liver disease. Results: from the five females families evaluated, two were characterized as extensive, one rebuilt, one was composed of brothers without ties of consanguinity and only one as the nuclear family. It was also possible to verify that the relatives presented themselves as the main caregiver, and that all families presented the monthly average of two minimum wages. Conclusion: taking into consideration that the family participation in the process of illness presents itself as a determinant factor for the satisfactory prognosis of patients, the role of nursing before the evaluation and intervention in the family context will contribute significantly to improved health status and wellbeing of patients and their families.

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Improving health care communication for caregivers: A pilot study

With the growing older adult population, there will also be more informal caregivers assisting friends and family with their health care. With the increasing complexity of health care, improved caregiver communication skills have the potential to reduce caregiver burden and frustration and improve care recipient health. The primary goal of this project was to develop and refine the content and teaching methods of a small-group behavioral change program to improve communication between caregivers of older adults and health care professionals. The authors developed the Care Talks program for improving communication between caregivers and health care professionals. They conducted a prospective cohort feasibility study of the intervention to assess caregiver communication confidence at baseline and one month postintervention. Six participants were enrolled. Of the 15 participants who answered the question, 15 (100%) would recommend this program to a friend. There was significant improvement in a 10-question composite of communication confidence pre/post scores from 74.1 to 79.6 p = .03. This small-group behavioral change intervention significantly improved communication confidence for this sample of caregivers. Further research is needed to determine the long-term effects of this program on caregivers and care recipients.

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Information sharing across generations and environments (InfoSAGE): study design and methodology protocol

Background: Longevity creates increasing care needs for healthcare providers and family caregivers. Increasingly, the burden of care falls to one primary caregiver, increasing stress and reducing health outcomes. Additionally, little has been published on adults', over the age of 75, preferences in the development of health information sharing with family members using online platforms. This study aims to assess a novel, Internet based, family-centric communication and collaboration platform created to address the information needs of elders and their informal caregivers in a community setting.; Methods: This study is an internet-based, open prospective cohort study, enrolling dyad pairs of one adult over the age of 75 with one informal caregiver. Dyads will be offered to use the InfoSAGE online platform without prospective assignment. Participants will consent using an online process that enables participation from any location and shares important study and privacy details. The platform will enable the capture of search queries and tracking of functions such as tasks and discussions. Surveys every six months assess health status, health and social needs, and caregiver burden using validated instruments over a two-year period. We will use a mixed methods approach, utilizing qualitative survey data along with website usage analytic data.; Discussion: Analysis of the longitudinal usage and survey data will help to examine the patterns of family communication and health information seeking as the central older adult ages. We will use the study data to inform design recommendations relevant to a complex mixture of users, with special consideration to the needs of older adult users and potential physical limitations.

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Paying the Hidden Bill: How Public Health Can Support Older Adults and Informal Caregivers

The article explores how public health systems in the U.S. can support older adults and informal caregivers. Topics discussed include how informal caregivers, an unpaid labor pool, are the cornerstone of long-term care in the U.S., forming a national caregiving strategy and ways these caregivers could be paid through medicaid, paid sick leave and providing tax credits.

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Older Brazilian caregivers and their lived experiences of caring—A hermeneutic phenomenological study

Aims and objectives: To understand the lived experiences of older Brazilian carers. Background: For many caregivers, the practice of caregiving becomes their daily lives, embedding in their care and the experiences, beliefs, learning and techniques that contribute to the meanings these caregivers attach to their world. Studies have reported on the experiences of caregivers in general; however, few studies have addressed the unique characteristics of older caregivers. Method: Phenomenological research was conducted in the homes of these persons who were registered in a public programme of home care. This study utilised recorded interviews with a guiding question and roadmap for characterisation. The transcribed interviews were analysed based on philosophical hermeneutics and on the understanding of the hermeneutic circle. The units of meaning were discussed from the perspective of Heidegger's phenomenology. Results: Six older primary caregivers participated, aged between 62–84 years. The following units of meaning were developed: the daily life of being in the world as an older person caring for another older person, the historicity and their disclosedness to the world of care. Conclusions: The worldliness of these people is influenced by a taxing routine and being overloaded and lonely, which renders these caregivers vulnerable because of this routine and because of the inherent weaknesses induced by the ageing process. Relevance to clinical practice: This research can help health professionals better understand the worldliness of older caregivers. Such understanding will enhance the assistance available to caregivers, which must extend beyond the care of the sick person: interventions can reduce their overburden and risk of illness, improving their experiences as caregivers and their quality of life. 

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Supporting Family Caregivers of Seniors Within Acute and Continuing Care Systems

Family caregivers who provide care to seniors at no cost to the healthcare system are an integral part of the healthcare system. Caregiving, however, can cause significant emotional, physical and financial burden. We held a one-day symposium on how to best involve and support family caregivers in the healthcare system. The symposium brought together caregivers, healthcare providers, administrators and policy-makers to identify needs and make recommendations to address these issues. Methods Participants engaged in conversation circles which were audio-recorded and transcribed. Data were qualitatively analyzed alongside written notes provided by participants. Results Symposium participants identified a lack of both orientation and education for healthcare providers about family caregivers and standardized processes for assessing caregiver burden. They highlighted a need to ensure that the family experience is captured and included as an essential component of care, foster a culture of collaboration, expand the notion of the healthcare team to include family caregivers, provide more integrated palliative care, and enhance policies and programs to acknowledge family caregivers. Conclusion There is a need to recognize the essential role of family caregivers in seniors' health and well-being, and to take on a more comprehensive approach to patient care.

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Muscled by the System: Informal Caregivers' Experiences of Transitioning an Older Adult into Long-term Care

This study explored informal caregivers' experiences of transitioning an older adult into long-term care (LTC). Qualitative description guided our analysis of semi-structured interviews with 13 informal caregivers of older adults from three LTC homes in southern Ontario. Our findings illustrate that caregivers experience chronic worry and burden before deciding on, or requiring to apply for, LTC. A sense of lack of control was a prominent theme, especially when caregivers were applying for LTC beds. Participants perceived pushing, pressure, and punishment from the health care system and felt relieved and fortunate after they accepted a bed offer. This tumultuous experience stimulated caregivers to anticipate future transitions. It is recommended that caregivers receive preparation and targeted support to manage transition experiences. Improved communication among health professionals is essential. Penalties for declining an offer for a bed in LTC should be re-examined in relation to its negative influence on caregivers' experience.

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Trends in Informal Care for Disabled Older Americans, 1982-2012

Background and Objectives: We examine trends in informal care from the perspective of both community-dwelling disabled older Americans and their caregivers from 1982 to 2012. We decompose hours of care received from spouses and children according to changes in: (a) the number of potential spousal and child caregivers ("family structure"), (b) the likelihood that existing spouses and children are caregivers ("caregiving propensity"), and (c) the amount of care provided by individual caregivers ("time burden").; Research Design and Methods: We examine two sets of time trends based on distinct samples of community-dwelling disabled older Americans from the 1982-2004 waves of the National Long-Term Care Survey (NLTCS) and the 2000-2012 waves of the Health and Retirement Study (HRS).; Results: Existing spouses' and children's decreasing likelihood of being caregivers led to fewer spousal and child caregivers per disabled older person in the 2004 NLTCS than the 1982 NLTCS. However, the NLTCS and HRS time trends suggest that the amount of care provided by individual caregivers was similar from 1989 to 2012.; Discussion and Implications: Because individual caregivers' time burden has remained fairly constant since at least 1989, advocacy on behalf of policies that promote more and better support for caregivers is appropriate.

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Factors Affecting Family Caregivers' Burden and Depression in Home-based Long-Term Care Service under the Long-Term Care Insurance System

Purpose: This study tried to identify changes in family burden after the introduction of the long-term care insurance and to examine the factors influencing subjective and objective caring burden and depression of family caregivers of elders receiving home-based long-term care. Methods: Data were collected from 203 family caregivers of elders from August 1 to 31, 2015 using questionnaires. They were analyzed in descriptive statistics, t test, ANOVA test, and multiple regression analysis. Results: The mean score of depression was 7.24, which suggested mild depression level. The subjective family burden was 2.71 and the objective burden 3.04. The factors affecting depression included subjective burden (t=5.08, p<.001), objective burden (t=2.80, p=.006), time of elderly care per day (t=-3.61, p< .001), caregiving duration (t=3.33, p=.001), age (t=3.13, p=.002), family relationship (t=2.48, p=.014), and economic status (t=1.99, p=.047). Conclusion: The family burden was most important influencing factor on caregiver's depression. Therefore, services and supports to alleviate caregivers' burden in the home-based care should be added to long-term care.

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Health information management practices in informal caregiving: An artifacts analysis and implications for IT design

Introduction: Unpaid informal caregivers of adult care recipients, including persons with dementia, experience multiple unmet information needs and information management challenges. Objectives: To understand the current personal health information management (PHIM) practices in informal caregiving for adults with and without dementia. Methods: Semi-structured interviews were performed with ten informal caregivers-half of whom were caring for persons with dementia-and four formal caregivers at an adult day service. Interviews centered on a paper-based tool distributed by the day service, the CARE Kit, permitting an artifacts analysis of the tools used by participants for PHIM. Qualitative thematic analysis was applied to interview data. Results: Caregivers' PHIM practices aimed to support daily care management and decision-making on behalf of care recipients, through: 1) information acquisition and integration across multiple sources and records; 2) information maintenance, updating, and use over time; and 3) information sharing and communication with healthcare professionals and other family caregivers. Participants reported advantages and challenges of their PHIM practices and tools, including fitting PHIM into their daily lives, managing PHIM-related cognitive workload, the functionality of PHIM tools, and the dynamic, longitudinal nature of PHIM. Conclusion: The study produced a number of implications for caregiver health information management information technology (CHIM IT), based on findings about the nature of caregivers' practices for managing information for adult care recipients. We present CHIM IT requirements related to privacy and security, customization and flexibility, ease of use, credibility and sensitivity, situation awareness, information integration, delegation and shared use, updating and maintenance, archiving and versioning, communication, agency and information access, and validation.

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The Cost of Caring: Economic Vulnerability, Serious Emotional Distress, and Poor Health Behaviors Among Paid and Unpaid Family and Friend Caregivers

This study examined differences between paid and unpaid family/friend caregivers to better understand the consumer-driven caregiving workforce. We compared economic vulnerability, unhealthy behavior, and serious emotional distress for 475 paid and 10,500 unpaid family/friend informal caregivers from the 2009 California Health Interview Survey. We then estimated whether caregiver status moderated the relationship between economic vulnerability and health outcomes. Compared to unpaid family/friend caregivers, paid family/friend caregivers had a 27% greater risk ( p = .002) of economic vulnerability. Among all family/friend caregivers, the probabilities of serious emotional distress and unhealthy behaviors increased by >100% and 28% for those with the greatest compared to the least economic vulnerability, and caregiver type did not moderate these relationships. To address economic and health vulnerabilities of paid informal caregivers, policy makers might increase wages in consumer-driven programs. These changes could prove beneficial to both paid informal caregivers and their care recipients, while reducing long-term inefficiencies in consumer-driven programs.

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Informal support for older adults is negatively associated with walking and eating during hospitalization

Processes related to daily care of older adults during hospitalization, such as mobility and nutrition, have long-term consequences for their health and functioning. Although instrumental support provided by family members during hospitalization is highly prevalent, its relationship to older adults' actual walking and eating is unknown. Data on walking level (walking outside vs. inside the room) and nutritional intake were collected from 493 independent older adults admitted to internal medicine wards through up to three daily interviews using validated questionnaires. Informal support with walking and eating was assessed with the modified Informal Caregiving for Hospitalized Older Adults scale. Multivariate regression showed that informal support with walking and eating was associated with greater likelihood of walking inside the room and with lower nutritional intake. This association between informal support and less walking and eating call for routine functional assessments and tailored counseling of informal caregivers to meet older patients' support needs.

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A Comprehensive Measure of the Costs of Caring for a Parent: Differences According to Functional Status

Approximately 34 million family and friends provided unpaid care to individuals aged 50 and older in 2015. It is difficult to place a value on that time, because no payment is made to the caregiver, and multiplying caregiving hours by a wage does not account for the value of lost leisure time, implications for future employability and wages, or any intrinsic benefits accrued to the care provider. This study used a dynamic discrete choice model to estimate the costs of informal care provided by a daughter to her mother, including these other costs and benefits not typically accounted for, and compared these cost estimates for 4 categories of the mother's functional status: doctor-diagnosed memory-related disease, limitations in activities of daily living (ADLs), combination of both, cannot be left alone for 1 hour or more. We studied women aged 40 to 70 with a living mother at the start of the sample period (N=3,427 adult daughters) using data from the Health and Retirement Study (1998-2012). The primary outcome was the monetized change in well-being due to caregiving, what economists call "welfare costs." We estimate that the median cost to the daughter's well-being of providing care to an elderly mother ranged from $144,302 to $201,896 over 2 years, depending on the mother's functional status. These estimates suggest that informal care cost $277 billion in 2011, 20% more than estimates that account only for current foregone wages.

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Creating a conceptual model for family caregivers of older adults intervention research: A narrative review of learned resourcefulness, resourcefulness, and the transtheoretical model

Providing and maintaining optimal care is challenging for older family caregivers who are caring for disabled older adults. Learned Resourcefulness can facilitate family caregivers' self-help strategies, and Resourcefulness can facilitate help-seeking from others. However, little is known about how older family caregivers can effectively maintain and adapt self-help and help-seeking strategies over time, especially as the dynamic nature of caregiving for disabled older adults demands change. To this end, the Transtheoretical model (TTM) provides useful constructs that address family caregivers' readiness to change their self-help and help-seeking behaviors. This paper reviews relevant literature regarding Learned Resourcefulness, Resourcefulness, and the TTM. The proposed conceptual model incorporates constructs from the TTM integrated with Learned Resourcefulness and Resourcefulness strategies to aid in the development and testing of interventions that are designed to promote the quality of life and health of older family caregivers while they are providing care to disabled older adults.

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The effects of leisure on stress and health of family caregivers

The number of older adults is projected to grow significantly by 2050. Predictions also suggest that living longer but not healthier lives will increase the demand for family caregivers as well. Regrettably, caregivers in comparison with noncaregivers will likely continue to experience higher levels of stress, poorer health, and increased propensity for using unhealthy behaviors to address their stress. This study used mediation analysis to examine the relationship among 3 leisure variables, perceived stress, and self-reported general health (SRGH) of family caregivers (n = 240) who completed an online survey. Results indicated that individually, each of the 3 leisure variables was positively associated with higher SRGH. Results also showed that perceived stress significantly predicted SRGH. Of greater significance, however, was the observation that perceived stress was significantly predicted by both satisfaction with time for leisure and satisfaction with the quality of the leisure experience but not by leisure participation. Thus, the variables that addressed caregivers' satisfaction with both the time for leisure and with the quality of the leisure experience were more effective than mere leisure participation to reduce perceived stress and ultimately provide better self-reports of health. These results are consistent with the literature about the ability of leisure to cope with stress. More importantly, they provide strong support for the design and implementation of interventions to help caregivers develop meaningful leisure-based activities to reduce perceived stress.

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Ambivalence, families and care

Although research shows that most parents and adult children report generally positive and supportive ties, there is also evidence that negative interactions and emotions are common in intergenerational relationships. To investigate this complexity, researchers have moved beyond simple models to orientations and approaches that recognise contradictory emotions and attitudes regarding family relationships in later life. These efforts have given rise to what has come to be termed the 'intergenerational ambivalence' perspective. In this article, we explore the applicability of this perspective to the issue of family caring. We begin by reviewing recent developments in the intergenerational ambivalence perspective. We then discuss a paradox: although caring appears to be a situation particularly prone to conflicting emotions, little research has focused specifically on ambivalence among carers. We present results from our work that shed light on the measurement of carer ambivalence, as well as substantive findings regarding sources of ambivalence for carers.

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Sharing lives: Adult children and parents by Marc Szydlik (2016)

No relationships last longer than connections between parents and children, particularly in the era of ever-growing life expectancy. Low fertility and the small number of siblings mean that modern families include fewer members of the same generation and more of a previous one, recasting the balance of exchange between parents, children and grandchildren in terms of space, money and time/care. This book presents and discusses the key findings of the Survey of Health, Ageing and Retirement in Europe (SHARE), focusing on intergenerational relations.

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The intersection of formal and informal care for older people in a multicultural society: the case of two adult day-care centres in Northern Israel

Despite being a relatively young society, Israel, like many other countries, has not escaped the global ageing phenomenon. About 11% of its population are aged 65 years or older; this compares with an average of 18% in many European countries. About 75% of Israel’s population are Jewish and about 21% are Arabs (CBS, 2017).[...] Despite the fact that more older people – from both communities – are now accepting a mix of support from their families alongside services, families are still the main source of care for older people in Israel (Katz et al, 2015).

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Implications of the use of migrant care work and web-based services on family caregivers' health

This article illustrates the implications of two recent trends on family carers' health: the employment of home-based migrant care workers; and the provision of web-based supports. The main factors traditionally associated with carers' health are used to analyse the results of a six-country study via a multilevel linear regression. Attention will be dedicated to the role of migrant care workers, who are often hired by private households to provide eldercare. Finally, web-based services for carers will be investigated by considering InformCare, a recently implemented European platform tested on a sample of carers from three countries (Germany, Italy and Sweden).

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Transforming care: innovation and sustainability (3rd Transforming Care Conference, 26-28 June 2017, Milan, Italy)

The focus of the ‘3rd Transforming Care Conference’ was twofold: (1) tensions between policy and social innovation in care policies; and (2) pressures on the financial and social sustainability of care systems. The rationale for choosing these topics stems from the fact that care policies are rooted in dynamic and unstable financial and social environments, thereby necessitating responses to many long-term and intergenerational challenges. At the same time, such challenges and policy responses are inherently complex, and any analysis needs to include the perspectives of carers, those in need of care and others involved in caring.

The conference aimed to bring together scholars from different backgrounds and perspectives to discuss how care is being transformed in ‘turbulent, multifaceted and changing contexts’. It addressed a range of topics: early child education and care, care for adults with disabilities and long-term care for older people

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Supporting carers in a remote region of Quebec, Canada: how much space for social innovation?

This research moves from the general hypothesis that assistance provided to a person needing support, and the effort needed to articulate work and care may, under certain conditions, become a factor in carers' inequality and vulnerability. The article presents the results of qualitative research conducted in Quebec, Canada, with carers of older people who also have full-time paid employment in the labour market, and on professionals providing these carers with services. It considers how the services offered to carers have been implemented and how they can affect carers' daily lives.

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The meaning of care: The social construction of care for elderly people by Bernard Weicht

Weicht’s latest book represents a profound reflection on informal care for elderly people from a social-constructivist perspective – a reflection that also provides a thorough account of gendered practices, power relations and contextual constraints in how care norms, practices and relationships are discursively constructed. 

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InformCare: the European information hub on family care

An increasing amount of research in Europe – and beyond – has focused on the development of innovative solutions for providing support services to family carers of frail older people. This is especially the case in terms of web-based programmes. [...] There is clearly a role for well-designed and robustly supported web-based support platforms like InformCare in helping to sustain carers, deliver policy aims and ensure carer access to information, advice and support.

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Collateral damage: Australian carers' services caught between aged care and disability care reforms

In Australia, 2.7 million family and friend carers care for people with disabling conditions (including mental health conditions), who are terminally ill and/or who are elderly and frail. It is no surprise that those carers who provide the most care often experience multiple disadvantages, including constraints on their ability to work and accompanying financial stress, social isolation, and high levels of disability, ill health and stress [...] The question remains, however: in the context of increasing fiscal constraint and the diversion of funds into the NDIS, exactly how much will be left to support the proposed integrated carer support system? Additionally, if this development does not materialise, what future is there for dedicated support for Australia’s carers?

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The Taiwanese Association of Family Caregivers: transformation in the long-term care debate for carers

Accepting political appointment from the government is a double-edged sword for an advocacy group, which could mean a chance to influence policies or conflicts with other advocacy groups. The Taiwanese Association of Family Caregivers (TAFC) went through such a process of transformation when it was appointed as a member of a formal committee set up by the Taiwanese government in 2009 in order to develop and implement a long term care insurance scheme. We named this process TAFC's awakening because this opportunity served as a catalyst for TAFC to confirm its identity as a representative of carers, speaking solely from the carer's perspective.

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Family care work: a policy-relevant research agenda

This article addresses the need for policy-relevant research agendas on family care in transaction with formal care and public as well as organisational norms and policies in light of the crisis in caregiving for older adults. We propose a combined institutional and life-course theoretical approach, suggesting seven ways of organising scholarly enquiry to promote understanding of the changing nature of family care in the 21st century, inform policymakers' efforts at supporting family caregivers and improve caregivers' and care recipients' quality of life. These include: (1) moving beyond snapshots of individuals; (2) conducting comparative cross-cultural and crosscohort analyses; (3) documenting social heterogeneity, vulnerability and inequality; (4) capturing individuals' and families' adaptive strategies and cycles of control during the caregiving process; (5) investigating policy innovations and natural experiments; (6) assessing third parties as mediating institutions between regulatory environments and caregiving families; and (7) attending to the subjective meanings of care.

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Empowerment of family caregivers of adults and elderly persons: A concept analysis

Aim This concept analysis defined and described the components of empowerment of family caregivers who care for adults and the elderly. Methods Rodgers evolutionary method of concept analysis was used. Data sources included Pub Med, CINAHL, Scopus, and Igaku Chuo Zasshi. Thirty articles published between 1995 and 2015 focusing on the empowerment of family caregivers providing care to adults and the elderly were selected. Result The analysis reveals 6 attributes, 5 antecedents, and 5 consequences. In addition, the results reveal structured aspects of family caregivers, care receivers, and other people surrounding them, and their relationships. Empowerment of adults' and elders' family caregivers may be defined as "positive control of one's mind and body, cultivating a positive attitude, proactively attempting to understand one's role as a caregiver to improve caregiving capabilities, focusing on others as well as oneself, supporting the independence of the care receiver, and creating constructive relationships with other people surrounding them." Conclusion The components of empowerment clarified in this research can be used for the measurement of and interventions aimed at improving empowerment among family caregivers. Furthermore, clarifying the definition of empowerment among family caregivers enables researchers to better distinguish empowerment from similar concepts in the future. 

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Income-based inequalities in caregiving time and depressive symptoms among older family caregivers under the Japanese long-term care insurance system: a cross-sectional analysis

AIM: Long-term care systems may alleviate caregiver burdens, particularly for those with fewer resources. However, it remains unclear whether socioeconomic disparity in caregiver burdens exists under a public, universal long-term care insurance (LTCI) system. This study examined income-based inequalities in caregiving time and depressive symptoms in Japanese older family caregivers. We further compared inequality in depressive symptoms with that of non-caregivers to evaluate whether family caregiving exacerbates this disparity. METHODS: Data were obtained from a cross-sectional, nationwide survey conducted by the Japan Gerontological Evaluation Study in 2013. Participants were functionally independent older adults aged >=65 years (N = 21,584). Depressive symptoms were assessed using the Geriatrics Depression Scale (GDS); caregiving hours per week, household income, and other covariates were also assessed. RESULTS; Family caregivers occupied 8.3 per cent of the total. A Poisson regression model revealed that caregivers in lower income groups (compared to those in the highest) were 1.32 to 1.95 and 1.63 to 2.68 times more likely to engage in >=36 and >=72 hours/week of caregiving, respectively. As for the GDS (>=5), an excess risk was found in the caregivers in lower (compared to higher) income groups (adjusted prevalence ratio: 1.57-3.10). However, an interaction effect of income by caregiving role indicated no significant difference in inequality between caregivers and non-caregivers (p = .603). The excess risk for GDS (>=5) in the caregivers compared to non-caregivers was observed across income groups. CONCLUSIONS: Our findings revealed a possible disparity in family caregivers under the public LTCI system. Further studies should examine factors associated with longer caregiving hours in lower income households. Our findings also suggest the necessity for more efforts to alleviate depressive symptoms in family caregivers under the LTCI system regardless of income level, rather than exclusively supporting those with a low income. 

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Effects of a caregiver-inclusive assistive technology intervention: a randomized controlled trial

BACKGROUND: The principal aim of this study was to investigate whether a caregiver-inclusive assistive technology intervention improved older care recipients' functional autonomy and decreased the perceived burden of their family caregivers compared to customary care. METHODS: The study was a single-blind, mixed-methods, randomized controlled trial with baseline data collection and follow-ups at six, 22-, and 58-weeks after baseline evaluation, which was prospectively registered (ClinicalTrials.gov Identifier: NCT01640470. Registered 11/21/2011). Dyads comprising a care recipient and family caregiver were randomly assigned to either a caregiver-inclusive experimental group (N=44) or a customary-care comparison group (N=46). Eligible care recipients were aged >=55 years and had one or more limitations with mobility or daily activities, and family caregivers provided at least four hours per week of assistance. Outcome measures were administered to both groups at baseline and at the three follow-up time points. The data collectors were blinded regarding participants' intervention group. The primary outcome measures were the Functional Autonomy Measurement System to assess care recipients' functional performance, and the Caregiver Assistive Technology Outcome Measure to assess caregivers' burden. Qualitative interviews examined participants' perceptions of the caregiver-inclusive and customary care interventions. RESULTS: The experimental intervention addressed significantly more dyad-identified problematic activities, but caregiver involvement was evident in both groups and outcomes were not significantly different over time. In both groups, care recipients' functional autonomy declined significantly (P<.01), and caregivers' activity-specific and overall burden decreased significantly (P<.01). CONCLUSIONS: Given the unintended congruence between the caregiver-inclusive and customary care interventions, the overall findings lend support for the provision of assistive technology to reduce caregiver burden. 

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Structural relationship between emotional and social support for young adult carers towards intergenerational care of the multi-ethnic elderly

Purpose The purpose of this paper is to examine the structural relationship between the emotional and social support provided for individuals with caring responsibilities for elderly relatives, and the quality of care actually delivered. In addition, the moderating role of gender is explored. Design/methodology/approach A quantitative research design was utilised in which 200 usable questionnaires were collected from 250 respondents comprised of young adults who adopt a caregiving roles in respect of elderly parents or other close elderly relatives. The structural equation modelling (SEM) technique was selected for data analysis, and the Analysis of moment structure software version 21 was used. Findings The SEM results revealed that emotional support for caregivers was the most important predictor affecting the intergenerational care of multi-ethnic elderly people. Additionally, a moderation analysis revealed that the relative influence in this connection was more pronounced among female caregivers. An increase in the emotional support received by the recipient was found to enhance the level of the relationship, and to result in closer intergenerational ties in the care of the multi-ethnic elderly. Furthermore, the receipt of social support positively influences the judgement of an individual, and expands that person's social network, which can subsequently have a favourable impact on the way in which one fulfils their caring role. The significant effect of social support provided for intergenerational caregivers in the context of the multi-ethnic elderly was higher in the group of male caregivers than in the group of female caregivers. Practical implications This study sends a strong message to policy-makers in developing countries about the need to consider within their National Policy for the Elderly, improvements in the national action plan for a holistic and integrated approach to ensure the well-being of caregivers and the elderly. Originality/value The results of the study help young adults to understand the importance of emotional and social support in boosting their relationships with parents and families and motivating intergenerational efforts in the care of the multi-ethnic elderly. Harmony within families is an important ideal in any circumstance, but in the scenario of ageing family members it may be even more essential to try to achieve it.

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Information-sharing with respite care services for older adults: a qualitative exploration of carers' experiences

Respite services play an important role in supporting older adults and their carers. When an older person is unable to fully represent themselves, provision of respite care relies on effective information-sharing between carers and respite staff. This study aimed to explore, from carers' perspectives, the scope, quality and fit of information-sharing between carers, older people and respite services. An explorative, cross-sectional qualitative study involving a purposive sample of 24 carers, recruited via carer support groups and community groups in voluntary organisations, was undertaken in North East Scotland. Data were collected from August 2013 to September 2014, with participants taking part in a focus group or individual interview. Data were analysed systematically using the Framework Approach. The multiple accounts elicited from carers identified how barriers and facilitators to information-sharing with respite services changed over time across three temporal phases: 'Reaching a point', 'Trying it out' and 'Settled in'. Proactive information-sharing about accessibility and eligibility for respite care, and assessment of carers' needs in their own right, were initially important; as carers and older people moved on to try services out, time and space to develop mutual understandings and negotiate care arrangements came to the fore; then, once shared expectations had been established, carers' chief concerns were around continuity of care and maintaining good interpersonal relationships. The three temporal phases also impacted on which modes of information-sharing were available to, and worked best for, carers as well as on carers' perceptions of how information and communication technologies should be utilised. This study highlights the need for respite staff to take proactive, flexible approaches to working with carers and to make ongoing efforts to engage with carers, and older people, throughout the months and years of them utilising respite services. Information and communication technologies have potential to enhance information-sharing but traditional approaches will remain important. 

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Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a scoping review

BACKGROUND: As the population is aging, the number of persons living with multiple chronic conditions (MCC) is expected to increase. This review seeks to answer two research questions from the perspectives of older adults with MCC, their caregivers and their health care providers (HCPs): 1) What are the health and social care needs of community-dwelling older adults with MCC and their caregivers? and 2) How do social and structural determinants of health impact these health and social care needs? METHODS: We conducted a scoping review guided by a refinement of the Arksey & O'Malley framework. Articles were included if participants were 55 years or older and have at least two chronic conditions. We searched seven electronic databases. The data were summarized using thematic analysis. RESULTS: 36 studies were included in this review: 28 studies included participants with MCC; 12 studies included HCPs; five studies included caregivers. The quality of the studies ranged from moderate to good. Five main areas of needs were identified: need for information; coordination of services and supports; preventive, maintenance and restorative strategies; training for older adults, caregivers and HCPs to help manage the older adults' complex conditions; and the need for person-centred approaches. Structural and social determinants of health such as socioeconomic status, education and access influenced the needs of older adults with MCC. CONCLUSION: The review highlights that most of the needs of older adults with MCC focus on lack of access to information and coordination of care. The main structural and social determinants that influenced older adults' needs were their level of education/health literacy and their socioeconomic status. [Abstract]

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Depression in Family Caregivers of Mexican Descent: Exacerbated by Stress and Mitigated by Mutuality

Despite common assumptions that non-paid family caregivers of Mexican descent benefit spiritually from their roles according to cultural familistic norms, there is also evidence of caregiver stress resulting in depression. Depression has the potential to seriously affect caregivers' health and their ability to continue to provide care. The current study's purpose was to examine the relationships among depression, stress, and mutuality (i.e., the quality of the caregiver-care recipient relationship) ( N = 74 caregivers of Mexican descent in the southwestern United States). Multiple regression models and exploratory mediational analyses indicated that the stress-depression relationship can be significantly mediated by mutuality. Results support culturally appropriate interventions to decrease caregiver stress and depression by promoting mutuality. In addition, with changing trends in outside work roles and mobility of caregivers of Mexican descent, policy should make services truly accessible to support caregiving families of Mexican descent.

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The Roles of Telehealth Tools in Supporting Family Caregivers: Current Evidence, Opportunities, and Limitations

Family caregivers need more information and training on caregiving as well as supportive tools to facilitate stress management and enhance their coping skills. In addition, family caregivers need social support and practical assistance. Telehealth tools, broadly defined as technology-based tools that bridge geographic distance, can be a promising method to deliver interventions designed for family caregivers and enhance access to resources and support. Telehealth technologies are especially important for caregivers living in rural areas or providing remote caregiving.

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Personalisation, personal budgets and family carers. Whose assessment? Whose budget?

Summary: The policy of personalisation in English adult social care prioritises choice and control by service users over the support they receive. Carers also have rights to assessments and support, but these rights have developed separately, so interdependencies between carers and service users may be overlooked. Moreover, it may be difficult to reconcile these divergent policies in routine practice. This article reports findings from a study examining the roles played by carers in England in the processes of assessment, support planning and management of personal budgets for disabled and older people. The study was conducted between January 2011 and February 2013. It involved a survey of 16 adult social care departments across 2 English regions, and interviews with personalisation and carers lead officers in three local authorities. The Framework approach was used to manage the data, and analysis was done thematically. Findings: Practice was fragmented and inconsistent. Carers were reported to be involved in service users' assessments, and also asked about their willingness and ability to continue caring, but not necessarily about their own needs. Separate carers' assessments were reported to be usually offered, but take-up was low and lead officers' opinions about their value varied. Any help given by carers reduced the level of service users' personal budgets, but there was no evidence that carers' own needs (as identified in carers' assessments) were taken into account. Applications: Greater clarity and consistency is needed, especially the linking of service users' and carers' assessments and finding appropriate ways to meet both. These changes will become increasingly urgent with the implementation of the 2014 Care Act. 

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A Multicenter Pilot Study of Burden Among Caregivers of Geriatric Rehabilitation Patients With Neuromusculoskeletal Diseases

Purpose: In this study, we aimed to describe the sociodemographic characteristics of caregivers of patients in a geriatric unit and to clarify the relationship between caregiver burden and specific clinical variables in the patients and the characteristics of the caregivers. Design: Cross-sectional multicenter study. Methods: One hundred twenty-three patients and 123 caregiver dyads, with mean ages of 72.5 ± 7.7 years and 51 ± 14.7 years, respectively, were included. The functional, psychological, and cognitive statuses of the patients were determined, and the sociodemographic characteristics of the caregivers as well as the type and duration of caregiving were recorded. Caregivers completed the Caregiver Burden Inventory (CBI) to measure the perceived burden of care. Most patients were female and generally lived with their family. Findings: Most of the caregivers were family members (90%), female (73.2%), primary school graduates (52.8%), and first-degree relatives (73.1%). The average CBI score was 33, and the highest CBI subscores were for time, developmental, and physical burdens. Caregiver burden correlated with the patient’s ambulatory, psychological, and cognitive status and with the caregiver’s age, gender, income level, and duration of caregiving. Conclusions: We have highlighted the relationship between caregiver and patient characteristics in a cohort of elderly Turkish patients with neurological and musculoskeletal disorders. In particular, we have highlighted the heavy caregiver burden in a developing country. Clinical Relevance: Our results may guide the nurses to understand the requirements of caregivers and to help them find suitable resources that would meet their needs to cope with their burden.

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Silent strain of caregiving: Exploring the best predictors of distress in family carers of geriatric patients

Objectives: The aim of this article was to identify the best predictors of distress suffered by family carers (FCs) of geriatric patients. Methods: A cross-sectional study of 100 FC-geriatric patient dyads was conducted. The negative impact of care (NIoC) subscale of the COPE index was dichotomized to identify lower stress (score of #15 on the scale) and higher stress (score of ≤16 on the scale) exerted on FCs by the process of providing care. The set of explanatory variables comprised a wide range of sociodemographic and care-related attributes, including patient-related results from comprehensive geriatric assessments and disease profiles. The best combination of explanatory variables that provided the highest predictive power for distress among FCs in the multiple logistic regression (LR) model was determined according to statistical information criteria. The statistical robustness of the observed relationships and the discriminative power of the model were verified with the cross-validation method. Results: The mean age of FCs was 57.2 (±10.6) years, whereas that of geriatric patients was 81.7 (±6.4) years. Despite the broad initial set of potential explanatory variables, only five predictors were jointly selected for the best statistical model. A higher level of distress was independently predicted by lower self-evaluation of health; worse self-appraisal of coping well as a caregiver; lower sense of general support; more hours of care per week; and the motor retardation of the cared-for person measured with the speed of the Timed Up and Go (TUG) test. Conclusion: Worse performance on the TUG test was only the patient-related predictor of distress among the variables examined as contributors to the higher NIoC. Enhancing the mobility of geriatric patients through suitably tailored kinesitherapeutic methods during their hospital stay may mitigate the burden endured by FCs. 

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Family caregiving for older Aboriginal people in urban Australia: Disclosing worlds of meaning in the dementia experience

Dementia in Australia’s Aboriginal and Torres Strait Islander population is an area of significant health and community concern. In this article, we use a hermeneutic mode of interpretation to deepen understanding of experience and meaning in dementia for family carers of older Aboriginal people in urban Australia. Specifically, we draw from the hermeneutic concept of “world disclosure” to illuminate the dementia experience in three ways: through an artwork of the brain and dementia; through concrete description of the lived relation of caregiving; and through an epochal perspective on the significance of contemporary caregiving in dementia. Using narrative and visual knowledge, this three-fold approach brings to the forefront the importance of ontological and existential meanings which resonate for Aboriginal families in the dementia caregiving experience. 

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Health Information–Seeking Behaviors of Family Caregivers: Analysis of the Health Information National Trends Survey

Background: The growing population of aging adults relies on informal caregivers to help meet their health care needs, get help with decision making, and gather health information. Objective: The objective of this study was to examine health information–seeking behaviors among caregivers and to identify caregiver characteristics that contribute to difficulty in seeking health information. Methods: Data from the Health Information National Trends Survey 5, Cycle 1 (N=3181) were used to compare health information seeking of caregivers (n=391) with noncaregivers (n=2790). Results: Caregivers sought health information for themselves and others using computers, smartphones, or other electronic means more frequently than noncaregivers. Caregivers born outside of the United States reported greater difficulty seeking health information (beta=.42; P=.02). Nonwhite caregivers (beta =−.33; P=.03), those with less education (beta =−.35; P=.02), those with private insurance (beta =−.37; P=.01), and those without a regular health care provider (beta =−.35; P=.01) had less confidence seeking health information. Caregivers with higher income had more confidence (beta =.12; P≤.001) seeking health information. Conclusions: This study highlights the prevalence of electronic means to find health information among caregivers. Notable differences in difficulty and confidence in health information seeking exist between caregivers, indicating the need for more attention to the socioeconomic status and caregivers born outside of the United States. Findings can guide efforts to optimize caregivers’ health information–seeking experiences.

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Caregivers’ experiences of a home support program after the hospital discharge of an older family member: a qualitative analysis

The ageing global population has seen increasing numbers of older people living with chronic health problems, declining function, and frailty. As older people seek to live out their years at home, family members, friends and neighbours (informal caregivers) are increasingly relied upon for support. Moreover, pressured health systems and shorter hospital length of stay mean that informal caregivers can find themselves supporting the older person who is still unwell after discharge. The Further Enabling Care at Home (FECH) program was developed as a nursing outreach intervention designed to systematically address support needs of family caregivers of older people after hospital discharge to sustain their home-based caregiving. The objective of this study was to explore the experiences of informal caregivers who participated in the FECH program after an older family member’s discharge from hospital.

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The impact of personal budgets on unpaid carers of older people

Summary: This paper focuses on the impact of a personal budget – either in the form of a direct payment or managed personal budget – on the role of unpaid carers of older budget holders. Data were collected via postal survey of 1500 unpaid carers and semi-structured interviews with 31 carers. Findings: Unpaid carers played a central role in supporting older budget holders irrespective of the type of budget received. The allocation of a personal budget may have decreased the amount of ‘hands-on’ care they provided, enabling them to do different things for and with the person cared for, but most did not relinquish direct involvement in care provision. Both kinds of personal budget provided greater flexibility to juggle caring tasks with other roles, such as childcare or paid employment. However, carers supporting direct payment users did experience higher levels of stress. This seemed linked to the additional responsibilities involved in administering the direct payment. Carers seemed relatively unsupported by their local Adult Social Care Department: the survey found that only one in five said they had ever received a carer assessment. Application: The findings offer a detailed exploration of the impact of personal budgets on carers, suggesting that even in countries with relatively well-developed systems of support for carers such as England their impact remains overlooked. The paper may be of interest to social work practitioners, managers, academics and social work policy specialists working in countries that have, or are about to introduce, personal budgets or other forms of cash-for-care scheme.

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Caregivers for people at end of life in advanced age: knowing, doing and negotiating care

Background: the need for palliative and end of life care for the oldest old is growing rapidly. Family carers often report they do not feel well supported; for better practice and policy, we need better understanding of their experiences and how to support them. Design and setting: people in the LiLACS NZ longitudinal study of advanced age identified a carer to be interviewed after their death. Nominated caregivers were contacted 3–6 months after an older person’s death and invited to take part in the current study. Subjects: fifty-eight interviews were conducted with carers of 52 people in advanced age, 20 Maori and 32 non-Maori. The majority of the 58 carers were in their 60 s and were women. Methods: guided-conversation interviews covered end of life preferences and experiences, needs and gaps in support, arrangements after death, and experiences of bereavement. Rigorous data analysis included multiple researchers identifying and interrogating themes across and within: the transcripts, and feedback and discussion with participants. Results: we identify a typology of nine categories of care, and argue that the support and care provided by family should be understood as going beyond simple task-based transactions. We present a model of end of life care describing and explaining inter-related aspects of knowing, doing and negotiating care tasks. Conclusions: this work furthers current understandings of care, as multifaceted and negotiated. This has very practical implications for thinking about how best to support the complex end of life caregiving work of people caring for a person in advanced age.

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Issues with the measurement of informal care in social surveys: evidence from the English Longitudinal Study of Ageing

Informal care plays a significant role in the care system for older people in the United Kingdom, and this is projected to increase considerably in the next three decades as the population ages. Understanding these trends requires a good quality measurement of informal care. In this study, the authors compare care-givers’ responses to different informal care questions from the English Longitudinal Study of Ageing (ELSA) to investigate the influence of question design on the self-reporting of informal care. They also analyse spousal care dyads in order to model discrepancies in the reporting of care provision between spouses to provide an insight into the reliability of informal care measurements. The authors find that the most common measures used are likely to be under-estimating both the scale and scope of informal care, and they recommend careful consideration of the content of informal care survey questions in order to operationalise the measures of informal care activities.

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Struggles for recognition and redistribution: family carers and domestic workers in Spanish eldercare

Theories of social justice have identified the revaluation of caregiving work as a global challenge. Still, struggles for recognition are shaped by the specific cultural and institutional contexts in which they emerge. This article explores struggles for the recognition of caregiving work in Spanish eldercare, focusing on advocacy for family carers and for domestic workers. Drawing on interviews, findings reveal that domestic workers' needs are politicised to a greater extent than family carers' needs; empowerment and claims for workers' rights contrast with notions of self-care and mutual support. While the struggles are differentiated, the undervaluation of eldercare is a common theme.

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Intergenerational flows of support between parents and adult children in Britain

Understanding patterns of intergenerational support is critical within the context of demographic change, such as changing family structures and population ageing. Existing research has focused on intergenerational support at a given time in the individuals' lifecourse, e.g. from adult children towards older parents and vice versa; however, few studies have focused on the dynamic nature of such support. Analysing data from the 1958 National Child Development Study, this paper investigates the extent to which the receipt of parental help earlier in the lifecourse affects the chances of adult children reciprocating with support towards their parents later in life. The findings show that three-quarters of mid-life adults had received some support from their parents earlier in life, and at age 50 more than half were providing care to their parents. Patterns of support received and provided across the lifecourse differ markedly by gender, with sons being more likely to have received help with finances earlier in the lifecourse, and daughters with child care. The results highlight that care provision towards parents was associated with support receipt earlier in life. However, the degree of reciprocity varies according to the type of care provided by children. Such findings have implications for informal care provision by adult children towards future cohorts of older people, and by extension, the organisation of social care.

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Formal and informal long-term care in the community: interlocking or incoherent systems?

Help with activities of daily living for people in the community is provided through formal services (public and private) and informal (often unpaid) care. This paper investigates how these systems interlock and who is at risk of unmet need. It begins by mapping differences between OECD countries in the balance between formal and informal care, before giving a detailed breakdown for the UK. New analysis of UK Family Resources Survey data for 2012/13 and 2013/14 suggests high levels of unmet need. Who receives formal and informal care, and who receives neither, among the working-age and older populations were investigated. Findings: while informal care fills some gaps left by the lack of availability of formal services (and vice versa), not all older or working-age disabled people are protected in these ways. Adults living alone and those with high but not the highest levels of difficulty are most likely to have unmet need. Means-tested public entitlements ameliorate but do not remove the increased risk among people in low-income households. The paper concludes that public policy needs to integrate its support for formal and informal modes of care, with particular attention to those groups most at risk of unmet need.

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The third person in the room: the needs of care partners of older people in home care services - a systematic review from a person-centred perspective

AIMS AND OBJECTIVES: To identify and synthesise the needs of care partners of older people living at home with assistance from home care services., BACKGROUND: "Ageing in place" is a promoted concept where care partners and home care services play significant roles. Identifying the needs of care partners and finding systematic ways of meeting them can help care partners to cope with their role., DESIGN/METHODS: This study is based on the PRISMA reporting guidelines. The systematic review of qualitative and quantitative studies was guided by the Joanna Briggs Institute methodology., RESULTS: In total, 16 studies were included in the review, eleven qualitative and five quantitative. Three main categories were revealed in the analysis: the need for quality interaction, the need for a shared approach to care and the need to feel empowered., CONCLUSION: Care partners of older people have several, continuously unmet needs. A person-centred perspective can contribute new understandings of how to meet these needs. A knowledge gap has been identified regarding the needs of care partners of older people with mental health problems. There is a need to develop a tool for systematic collaboration between home care services and care partners, so that the identified needs can be met in a more thorough, systematic and person-centred way., RELEVANCE TO CLINICAL PRACTICE: The carers in home care services need competence to identify and meet the needs of care partners. The implementation of person-centred values in home care services can contribute to meet the needs of care partners to a greater extent than today. Future research on the needs of care partners of older people with mental health problems needs to be undertaken.

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Informal care and health behaviors among elderly people with chronic diseases

Background: The mechanism by which social relationships influence health can be interpreted as a social network regulating one's health behaviors. Based on the hypothesis that relatives, friends, or neighbors are sources of social support and may monitor one's health behaviors, researchers have gotten significant and consistent results that a social network can regulate health behaviors. However, few empirical studies have been conducted to examine the role of informal care in the regulation of health behaviors, especially for elderly individuals with chronic diseases that can be controlled by healthy behaviors. This paper researched the effects of informal care on health behaviors-smoking control, dietetic regulation, weight control, and maintenance of exercise-among elderly patients with chronic diseases in China who are facing the challenge of aging. Methods: We used the propensity score matching method to control the impacts of a very rich set of family and individual characteristics. The 2011-2012 national baseline data of the China Health and Retirement Longitudinal Study (CHARLS) was used. Results: Our findings showed that informal care could significantly help improve the health behaviors of elderly people. Informal care could improve the compliance of smoking control and dietetic regulation significantly. Elderly people with informal care smoked less and consumed more meals per day. For weight control, informal care helped decrease the possibility of weight gain of elderly people, but its impacts were not significant for BMI and weight loss. Last, for the elders, informal care could only help increase the probability of walking exercise; however, there was no significant result for moderate exercise. Conclusions: Findings from this study highlight the importance of informal care among elderly people. Our results appeal to policy makers who aim to control chronic diseases that they should take informal care into account and provide appropriate policies to meet the demand of informal care for elderly people. 

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Gender and sex differences in carers' health, burden and work outcomes: Canadian carers of community-dwelling older people with multiple chronic conditions

Using two waves of survey data on family carers caring for older adults with multiple chronic conditions in Ontario and Alberta, this article provides a sex and gender analysis of 194 carers' health outcomes. Gender and sex differences were examined on the following health outcomes: general self-efficacy; physical and mental health composite scores; overall quality of life; and the Zarit Burden Inventory – as well as experiences with work interference for carer-employees. Multivariate ordinary least squares linear regressions were used to estimate the effects of sex and gender, controlling for the carer's socio-demographic and geographic characteristics, as well as for the characteristics of the care recipients. Sex and gender were found to have differentiated effects on each health outcome examined, providing evidence for specifically targeting health interventions by sex and gender. First, sex matters, as illustrated by the fact that female carers were found to be experiencing more negative health impacts than male carers (shown in the physical composite score and the quality of life score). This suggests that health-related interventions need to be targeted at female carers. Further, male carers are more likely to experience less carer burden, and more work interference, than female carers. Second, gender matters, as illustrated by the fact that masculine and androgynous genders showed significantly positive associations with general self-efficacy. This suggests that carers with feminine and undifferentiated gender roles experience more challenges with general-self-efficacy and could benefit from training and educational interventions to enhance their confidence in the caring role.

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Working longer, caring harder - the impact of 'ageing-in-place' policies on working carers in the UK and Sweden

Most developed countries have introduced significant changes in housing and long term care policies for older people. Simultaneously, there is increasing policy and economic emphasis on extending working lives and on changes to pension schemes. These changes have combined to have negative consequences for working-age family carers. In this contribution the authors discuss the situations in the UK and Sweden - two countries with different policy traditions but facing similar challenges.

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Women and the Crisis of Care in the United States

The need for long-term care (LTC) services has been growing, and is escalating with the aging of the baby boomers. Women are the main providers and recipients of care in the formal (paid) and informal (family) LTC system, meaning they bear the brunt of the gap between the need for care and available resources. Without strong public resistance, this gap is likely to be filled by relying upon family care, mainly provided by women. This re-familization of care could turn our crisis of care into a catastrophe for low- and middle-income families.

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Elder Abuse in the African Diaspora: A Review

Background: As with many other populations, abuse of older adults is a growing problem across the Africa Diaspora. Modernization and urbanization are eroding the traditional values of respect for older adults. Also, older adults living in environments with limited social and economic resources, and having no means of economic support create a recipe for elder abuse and neglect. Methods: This article reviews the current literature on the epidemiology, risk factors, and interventions used for elder abuse across the African Diaspora. Results: Reports of elder abuse range from 24.9% to 81.1% across the Diaspora. Risk factors include cognitive and physical impairment, social isolation, lack of resources and widowhood. Conclusion: Community-based programs using the unique social networks of older populations of African descent can provide a venue to improve caregiver training and support, reinforce traditional filial and informal caregiving practices, increase the utilization of available governmental and institutional.

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General and proximal associations between unpaid eldercare, time constraints and subjective well-being

Population ageing requires understanding the implications of eldercare. Using American Time Use Surveys, the authors find that caregivers spend less time on personal care and social activities/sports, and more time on housework, than individuals who do not provide any eldercare. They also report higher stress and lower happiness. In addition, caregivers may not provide care every day, but on days when they do, they also spend more time on housework and less on paid work, and report higher levels of sadness than on days when they do not provide care. Regular caregivers experience worse wellbeing than non-caregivers, but also experience additional strain on days when they provide care.

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Recognizing the Important Role of Family Caregivers

Harris focuses on the the healthcare industry's start of recognizing family members and close friends to have a greater impact on the patients experience of illness and outcomes than formal healthcare. She also highlights the statistics of United States Census Bureau and the National Center for Heath Statistics 2016 profile of older Americans and opportunity to recognize and celebrate the valuable role that informal caregivers provide every day by showing support through shopping, sending card, telephone calls, random acts of kindness and spiritual support through prayer.

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Policy and advocacy for informal caregivers: How state policy influenced a community initiative

With a growing proportion of elderly in the global population, the role of 'informal caregivers' gains importance. Informal caregivers are unpaid family members or friends who provide assistance to home-dwelling adults with health-related needs or limitations. Internationally, informal caregivers provide important medical support to those with a variety of diseases. While informal caregivers will remain vital to the growing aging population's pursuit of healthy aging, they often suffer from 'caregiver burnout,' a state of physical, emotional, and mental exhaustion caused by their caregiving work. Policy and legislation are needed to diminish the burden on caregivers and to help assure that resources are allocated for these caregivers. We describe an initiative aimed at providing appropriate social support for caregivers by partnering among local organizations, hospitals, and health authorities. 

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Is it time to create a new nurse role dedicated to helping carers?

Informal carers play a vital role in enabling people with ongoing support needs to be cared for at home, but this has a negative impact on carers' own health and wellbeing. Although community nurses are well placed to identify and support carers, falling numbers of district nurses and the increasing needs of an ageing population mean they have limited time and so focus on patients. This article proposes the creation of a 'carer support nurse' role entirely dedicated to supporting carers.

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A systematic review of questionnaires used to measure the time spent on family care for frail older people

Time spent on family care of frail older people is difficult to substantiate because of its complex nature. The aim of this study is to check the content validity of existing questionnaires measuring the time spent on caring. Comparing the activities mentioned in the questionnaires with those from other data sources (three validated scales measuring the functional limitations in day-to-day activities and a qualitative study) enabled identification of important drawbacks in the questionnaires reviewed. A comprehensive list of activities was built in order to help future researchers to conduct effective data collection and thereby enable an in-depth analysis of family care supply.

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Family caregiving and compassion fatigue: A literature review

As the population ages, there is a growing need for families and friends to support frail older adults in their home. Although many family caregivers report feeling satisfied with their caring role, a growing number of caregivers also feel physically, emotionally, and financially drained by the experience. The purpose of this literature review is to explore the experience of compassion fatigue (CF) among family caregivers, and to suggest strategies to combat this possible consequence of caregiving. A literature search was conducted using the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed, and ProQuest databases. In total, six English peer reviewed articles related to CF and family caregiving were identified for review. Although there are few studies available on this topic, the literature suggests that CF is a concern for this group of caregivers. Caregivers were found to be consumed by a sense of responsibility to support their relatives, and they showed signs of hopelessness, guilt, resentment, and social isolation. To combat CF, we advocate implementing a systems management approach, which would bring together all healthcare stakeholders to support family caregivers and those they care for.

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Information and communication technology-mediated support for working carers of older family members: an integrative literature review

How best to support working carers is being paid increased attention across Europe and internationally. This article examines a largely unexplored area within the empirical literature, namely, information and communication technology-mediated support for working carers of older people. Using an integrative review methodology to draw on both quantitative and qualitative data, 14 studies were identified. Themes included making work–life balance easier, reducing the burden of caregiving and promoting well-being. Factors to consider in the design, implementation and evaluation of innovative support solutions for working carers are put forward. However, a lack of longitudinal studies and biased samples warrants further investigation.

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Health effects of informal caring in New Zealand: longitudinal findings from the Health, Work and Retirement study

This study investigates changes in the mental and physical health of carers compared to non-carers over 10 years in a sample of New Zealanders aged 54–70. Mental health increased slightly over time for all participants but there was no difference in trajectory change based on carer status except for those who stopped caring. No significant differences in physical health or differences in trajectory change for physical health across time based on caregiver status were found. Results provide some support for a health selection bias into caring and the adaptation hypothesis of caring across time.

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Innovative employers enhance caregiver benefits

[...]by 2040 the percentage of people aged 65 and older will have nearly doubled to nearly 22%, up from 13% in 2010. According to the Families and Work Institute’s 2016 National Study of Employers, 42% of employers offer elder care resource and referral services and 78% provide some amount of either paid or unpaid time off for employees who need to care for aging relatives. [...]25% of all family caregivers are younger millennials and 50% are under the age of 50. [...]recently, however, employees with elder care responsibilities had to use their paid time-off days or take an unpaid FMLA leave.

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DSHS rolls out two new caregiver support services

Ultimately, programs aim to help seniors stay in homes. The Washington state Department of Social and Health Services has rolled out new services for unpaid caregivers. Bea Rector, Olympia-based director of the home and community services division within the Aging and Long Term Support Administration of DSHS, says the services are designed to help at-home clients and care recipients and may also have financial savings. Like the Family Caregiver Support Program, Aging & Long Term Care of Eastern Washington subcontracts MAC and TSOA assessments and resources through Elder Services of Spokane, a division of Frontier Behavioral Health.

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Older Adult Spouses with Multiple Chronic Conditions: Challenges, Rewards, and Coping Strategies

There is a paucity of research exploring how spouses to older adults with multiple chronic conditions make meaning of their caregiving experience. For this study, we asked: What is the experience of spousal caregivers to persons with multiple chronic conditions? We applied Thorne's interpretive description approach, interviewing 18 spouses who provided a rich description of their caregiving experience; interviews were transcribed verbatim and thematically analysed. Themes were categorized according to challenges encountered, rewards gleaned, and sustaining strategies employed by participants in caregiving to their spouse with multiple chronic conditions. Unique findings relate to the challenges inherent in decision-making within the context of multiple chronic conditions. This article begins to address the gap in the literature regarding the caregiving experience within the context of multiple chronic conditions.

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A National Profile Of End-Of-Life Caregiving In The United States

To date, knowledge of the experiences of older adults' caregivers at the end of life has come from studies that were limited to specific diseases and so-called primary caregivers and that relied on the recollections of people in convenience samples. Using nationally representative, prospective data for 2011, we found that 900,000 community-dwelling Medicare beneficiaries ages sixty-five and older who died within the following twelve months received support from 2.3 million caregivers. Nearly nine in ten of these caregivers were unpaid. Compared to other caregivers, end-of-life caregivers provided nearly twice as many hours of care per week and, especially in the case of spousal caregivers, reported more care-related challenges. Yet older adults at the end of life were not significantly more likely than other older adults to receive caregiving funded by government, state, or private insurance. To meet the needs of older adults at the end of life, their unpaid caregivers must receive greater recognition and expanded access to supportive services.

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Formal and informal long term care work: policy conflict in a liberal welfare state

Purpose The undervaluing of care work, whether conducted informally or formally, has long been subject to debate. While much discussion, and indeed reform has centred on childcare, there is a growing need, particularly in countries with ageing populations, to examine how long-term care (LTC) work is valued. The purpose of this paper is to provide an overview of the way in which employment policies (female labour market participation, retirement age, and precarious work) and social policies (care entitlements and benefits/leave for carers) affect both informal carers and formal care workers in a liberal welfare state with a rapidly ageing population. Design/methodology/approach Drawing the adult worker model the authors use the existing literature on ageing care and employment to examine the approach of a liberal welfare state to care work focusing on both supports for informal carers and job quality in the formal care sector. Findings The research suggests that employment policies advocating increased labour participation, delaying retirement and treating informal care as a form of welfare are at odds with LTC strategies which encourage informal care. Furthermore, the latter policy acts to devalue formal care roles in an economic sense and potentially discourages workers from entering the formal care sector. Originality/value To date research investigating the interplay between employment and LTC policies has focused on either informal or formal care workers. In combining both aspects, we view informal and formal care workers as complementary, interdependent agents in the care process. This underlines the need to develop social policy regarding care and employment which encompasses the needs of each group concurrently.

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Do Personal Budgets Increase the Risk of Abuse? Evidence from English National Data

With the continued implementation of the personalisation policy, Personal Budgets (PBs) have moved to the mainstream in adult social care in England. The relationship between the policy goals of personalisation and safeguarding is contentious. Some have argued that PBs have the potential to empower recipients, while others believe PBs, especially Direct Payments, might increase the risk of abuse. This paper provides empirical evidence about levels of uptake of PBs and safeguarding referrals in England based on in-depth analysis of national data at aggregate, local council level in England, covering 152 Councils. This is complemented by analysis of 2,209 individual referral records obtained from three purposively selected study sites. The aim is to explore whether available data could provide evidence of association between the uptake of PBs and safeguarding referrals. Analysis of the national dataset found no significant relationships between PB uptake and the level and type of alleged abuse. However, analysis of individual-level referral data, from the three selected sites did find some significant associations particularly with financial abuse; and found the main perpetrators of the alleged abuse to be home-care employees. The findings are discussed within the context of current policy and practice.

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Stakeholder Meeting: Integrated Knowledge Translation Approach to Address the Caregiver Support Gap

Family caregivers are an integral and increasingly overburdened part of the health care system. There is a gap between what research evidence shows is beneficial to caregivers and what is actually provided. Using an integrated knowledge translation approach, a stakeholder meeting was held among researchers, family caregivers, caregiver associations, clinicians, health care administrators, and policy makers. The objectives of the meeting were to review current research evidence and conduct multi-stakeholder dialogue on the potential gaps, facilitators, and barriers to the provision of caregiver supports. A two-day meeting was attended by 123 individuals. Three target populations of family caregivers were identified for discussion: caregivers of seniors with dementia, caregivers in end-of-life care, and caregivers of frail seniors with complex health needs. The results of this meeting can and are being used to inform the development of implementation research endeavours and policies targeted at providing evidence-informed caregiver supports.

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How can employers do more to support eldercare in the workplace?

Employers are increasingly finding ways to support workers who are juggling jobs, children, and looking after elderly parents. A new era of flexible working is making life easier for carers. For employers that want to do more, concierge-style support programmes are an avenue to explore.

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Psychometric properties and relations with coping and family strain of the Health Services and Caregiver Experience questionnaire (HSCE): an outcome measure of informal caregivers experience for inpatient care in Italy

Background In the last decade, the number of patients supported by informal caregivers has substantially increased. In the Italian healthcare context, informal caregivers’ experience of care is a new under-recognized construct, and no assessment tool is available. Measuring caregivers’ experience is important since in Italy the relationship between doctors and patients/relatives is still considered asymmetrical. The current study presented development and initial psychometric properties of the Health Services and Caregiver Experience questionnaire (HSCE), a self-report tool of caregivers’ global experience for inpatient clinical care, including factor structure, reliability and its relations with measures of coping strategies and family strain. Methods The HSCE was administered to a total of 503 informal caregivers of inpatients admitted at an Italian University Hospital (mean age = 48.08 years, SD = 14.82, females = 61.40%). Family Strain Questionnaire-Short Form (FSQ-SF) and Coping Orientations to Problems Experience-New Italian Version (COPE-NVI) were administered to a subgroup of participants. First-grade relatives were 73.10%, whereas 13.20% were second-grade relatives and 13.70% were home-watch caregivers. Results Exploratory and confirmatory factor analyses showed a structure with a single factor, which explained 64.80% of the total variance. All the items had salient loadings. In the two subsamples, HSCE had excellent internal consistency (Cronbach’s alpha = 0.95-0.97). Positive moderate correlations were found between HSCE and FSQ-SF scores (r = 0.45, p < .05), between HSCE and COPE-NVI scale scores, including COPE-NVI positive attitude and COPE-NVI problem solving scores (rs’ range = 0.51-0.57, p < .05). Moreover, a positive large correlation between HSCE and COPE-NVI social support scores emerged (r = 0.72, p < .05). Correlations were not significant between HSCE scores and COPE-NVI turning to religion and avoidance strategies. Conclusions The HSCE resulted to have good psychometric properties. Better caregivers’ experience correlated with stronger family strain but also with better problem solving and social support. The study expanded knowledge on caregiver’s experience in Italy and indicated that HSCE is a valid and reliable tool to measure this under-recognized construct in Italy.

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Managing Medicines for Patients Dying at Home: A Review of Family Caregivers' Experiences

Context. Increased life expectancy, technical advances in treatment and symptom control, and the extension of palliative care in community settings not only lengthen life but also make it possible for many patients to be cared for, and to die, at home. Moreover, death increasingly occurs in late old age and after a prolonged period of comorbidity and/or frailty. This has far-reaching consequences for the way that professional services are resourced and organized and for the informal carers who are often responsible for providing the greater part of patient care, including management of complex medication regimes. Objectives. To explore the literature focused on family caregivers' (FCGs) experiences of medication management for patients being cared for and dying at home. Methods. This literature review takes a critical interpretive synthesis approach to the review of 15 identified articles. Results. Findings show that FCGs can struggle to manage medications for someone who is dying at home, yet there is an expectation that they will take on these roles and are often judged by professional standards. Five key themes identified particular issues around administration, organizational skills, empowerment, relationships, and support. Conclusion. As increasing demands are placed on FCGs, there remains limited acknowledgment or understanding of the challenges they face, how they cope, or could be best supported. Alongside training, FCGs need access to 24 hours of support and medication reviews to rationalize unnecessary medications. Furthermore, the ethical challenges arising from administering medicines at the end of life also need to be acknowledged and discussed.

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An integrative review on family caregivers' involvement in care of home-dwelling elderly

Often family members provide care-giving, which allows older adults to remain in their homes. With declining health and increasing frailty, care-giving of elderly people becomes a task of family caregivers (FC) in conjunction with home care nurses. It has been shown in both acute care settings and long-term care facilities that family members prefer to be involved in decision-making and care planning for their next of kin. Therefore, an integrative review was conducted to explore the body of knowledge of FCs' involvement in home-care settings from the FCs' perspective. CINAHL, PubMed, and Cochrane databases was searched with the terms family caregiver, involvement, home care, and community dwelling. Studies written in German or English between 1996 and 2017 focusing on FCs' caring for home-dwelling older adults together with home care nurses were included and critically appraised. The extracted findings were analysed with concept analysis method. Twenty-six studies were included and five themes were identified. Four themes formed the basis of assistance towards family caregivers by nurses and included "relationship building with professionals," "negotiating with professional care," "being professionally supported," and "managing role expectations and knowledge sharing". The fifth theme, "working together" described the mutual care for the care recipient. Although the first four themes were consistent with a pre-existing conceptual model by Sims-Gould and Marin-Matthews (2010), the fifth required an expansion of the model with an additional contribution "collaborative practice". The findings illustrate that involvement in care is an interactional process, which provides the basis for collaborative practices with the home care nurses for family caregivers. Family members often want to be part of the healthcare team, and nurses need contextual factors that allow providing their full range of skills and knowledge to involve family caregivers accordingly.

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Spotlight: Mind the care gap – exposing the health system’s vulnerability to the gap between family care provision and anticipated demand

This Spotlight offers an analysis of family carers, those who provide care and support on an unpaid basis to people who are sick, disabled or frail in the community. It explores how demand for care at home is likely to increase dramatically while the future supply of family carers may be limited by demographic factors. High calculations of the monetary value of family care to the State underscore it’s vulnerability to any future shortage in family carers. Current developments which may have an impact on carers’ lives and the future supply of carers are considered.

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Public expenditure costs of carers leaving employment in England, 2015/2016

In the context of global population ageing, the reconciliation of employment and unpaid caring is becoming an important social issue. The estimation of the public expenditure costs of carers leaving employment is a valuable measure that is of considerable interest to policy makers. In 2012, the Personal Social Services Research Unit estimated that the public expenditure costs of unpaid carers leaving employment in England were approximately £1.3 billion a year, based on the costs of Carer's Allowance and lost tax revenues on forgone incomes. However, this figure was known to be an underestimate partly because it did not include other key benefits that carers who have given up work to care may receive. This paper presents a new estimate of the public expenditure costs of carers leaving employment. Key sources of information are the 2009/2010 Survey of Carers in Households, 2011 Census and 2015/2016 costs data. As well as Carer's Allowance, the estimate also now includes the costs of other benefits that carers leaving work may receive, namely, Income Support and Housing Benefit. The results show that the estimated numbers of carers who have left employment because of caring have increased from approximately 315,000 to 345,000. Due mainly to the inclusion of a wider range of benefits, the public expenditure costs of carers leaving employment in England are now estimated at £2.9 billion a year. The new estimate comprises £1.7 billion in social security benefits paid to people who have left their jobs because of unpaid caring, plus another £1.2 billion in taxes forgone on this group's lost earnings. The paper concludes that, if there was greater public investment in social care, such as "replacement care" to support carers in employment, and fewer carers then left employment, public spending on benefits would be lower and revenues from taxation would be higher.

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Couples in Need of Home Care Services: Experiences With Support From Care Professionals

Many older people desire to remain in their homes and be cared for by a family member, but this arrangement requires support from care professionals. The aim was to describe how couples in need of home care services experienced the received support from care professionals. A qualitative design with content analysis was used. Data were collected through diaries and focus groups consisting of eight couples between 65 and 80 years, and two registered nurses. The main findings are described by the following categories: Organizational adapted, Withholding, Being in a gap, resulting in the theme Lack of professional support. Couples experienced shortcomings that were related to the organization, the care professionals, and the couples themselves. The theme Lack of professional support requires more knowledge.

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The Treatment of Informal Care-Related Risks as Social Risks: An Analysis of the English Care Policy System

The social risk literature examines the extent to which states have provided social protection against the 'old' social risks of the post-war era and the 'new' social risks affecting post-industrial capitalist states. In this paper the contingency of the provision of informal care to people aged 65 and over is discussed. The paper deconstructs the concept of social risk to determine the characteristics and processes which contribute to states recognising specific contingencies as social risks which require social protection. This conceptualisation is applied to make the case that care-related risks associated with the informal care of older people should be recognised and treated as social risks by states. Data from a qualitative study of the English care policy system provide empirical evidence that informal care-related risks are recognised, but not treated, as social risks in England. The findings reveal informal carers, and the older people they care for, receive inadequate and inconsistent statutory protection against the poverty and welfare risks they face. Furthermore the design and operationalisation of the English care policy system generates risks for care relationships.

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The start of caring for an elderly dependent family member: a qualitative metasynthesis

Background: The family often takes care of an elderly person who suddenly becomes dependent. This greatly affects different aspects of the caregivers’ lives. The aim of this study is to explore the initial experiences, during the first year of care, of persons who suddenly become caregivers for elderly dependent relatives. Methods: A search in CINAHL, PsycINFO, WOS, Medline, and Scopus and a metasynthesis of qualitative research were conducted including 19 articles. Results: Three categories were developed to explain the process of becoming a caregiver ‘taking on the role’ (life changes, uncertainty and confusion, and acceptance or resistance); ‘beginning to realise’ (new needs, impact, and appraisal); and ‘implementing strategies’ (seeking help and self-learning, reordering family and social relationships, solving problems, and devising strategies to decrease negative emotions and stress). Conclusions: The synthesis provides a comprehensive understanding of the experience of becoming a caregiver in order to help health-care professionals to adapt care plans to this situation.

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What effect does delirium have on family and nurses of older adult patients?

Objectives: This study aims to analyse the level of distress caused by delirium in patients' family and their nurses, and to identify factors associated with psychological distress in families of older adult inpatients in Intermediate Care Units/IMCUs regarding their global experience during hospitalization. Method: A prospective pilot study was carried out with families and nurses of older adult patients (≥65 y.o.) consecutively recruited from two IMCUs in Intensive Care Medicine Service in a University Hospital. Patients with Glasgow Coma Scale ≤11, brain injury, blindness/deafness and inability to communicate were excluded. Delirium was daily assessed with Confusion Assessment Method/CAM. The distress level regarding this episode in family and nurses was measured with Delirium Experience Questionnaire/DEQ. Family psychological distress of all recruited patients was assessed with Kessler Psychological Distress Scale/K10. Results: This study included 42 inpatients (mean age/MA = 78 y.o., 50% women), 32 families (68.8% sons/daughters, MA = 50.6 y.o., 81.3% women) and 12 nurses caring for delirium patients (MA = 33 y.o., all women). A total of 12 (28.6%) patients had delirium. Distress related to this episode were higher for families than for nurses (M = 3 vs. M = 2), but differences did not reach statistical significance (Z = –1.535, p = 0.125). The hierarchical regression model explained 44.3% of variability in family psychological distress. Higher levels of psychological distress were associated with living with the patient (p = 0.029), presence of previous cognitive decline (p = 0.048) and development of delirium (p = 0.010). Conclusion: These preliminary results show that family psychological distress is higher, when older adult patients developed delirium during hospitalization. Particular attention to these family carers should be given in future development of psychological support and psychoeducational interventions.

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Holding Up More Than Half the Sky

In recognition of the contributions that women made to Chinese society, Mao Zedong said that “women hold up half the sky.” In my family of origin, I am 1 of 5 children. Our ages range from mid-70s to early 60s. On Mother’s Day 2017 our mother “went home” following 2 years of steady decline. Mom lived on her own for 34 years, and she did quite well managing her affairs, keeping house, and visiting her children who were scattered around the country. But failing eyesight, hearing loss, and an inability to maintain personal hygiene and adequate nutrition and hydration began to take hold.

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Ethnomoralities of care in transnational families: care intentions as a missing link between norms and arrangements

Building on the distinction between the normative and the negotiable aspects of care, we argue that to understand the social phenomenon of care, we have to analyse not only the moral norms and the care arrangements, but also the intermediary level of intentions. The article presents an ethnomorality of care model combining these three levels. The article explores the case of transnational families (TNFs) of Polish post-2004 EU enlargement migrants with still relatively young parents back in Poland. Care provision for dependent elderly members remains a future challenge in the Polish TNFs, and at this stage it is interesting to inquire plans about the future support for the elderly, especially in the light of Polish predominant (informal) family care regime. We focus on care intentions in which social actors confront moral beliefs with capabilities and construct various social accounts for not following the norm of family care.

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Functional Decline and Emotional Elder Abuse: a Population-Based Study of Older Korean Adults

Elder abuse is an increasingly prevalent issue in South Korea. The current study examines the association between functional impairment and emotional abuse victimization in Korean adults 65 and older. We also examines the mediating roles of diverse aspects of family resources (i.e., older adult’s self-esteem, family cohesion, family assistance, contact with friends/neighbors, and participation in social activities) in the aforementioned association. We analyzed 9691 community-dwelling older Koreans from a population-based survey of the 2009 Survey of Elderly Care and Welfare Need. We conducted a path analysis to analyze the mediational hypothesis. About 11% of the study sample reported experiencing emotional abuse by a family member in the past year (n = 1082). The results of the mediational analysis showed that greater ADL/IADL limitations were associated with (a) reduced self-esteem and (b) receiving more assistance from family, which were ultimately associated with increased risk of emotional abuse victimization. Elder abuse is a family crisis that may occur as a result of maladaptation to the heightened long-term care needs of older family members. Practitioners should take into account older adults’ vulnerability in terms of the loss of adaptive resources in the face of functional decline. This study further supports the importance of relieving the burden of family caregivers to avoid the incidence of emotional elder abuse.

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New Evidence on Employment Effects of Informal Care Provision in Europe

Objective To estimate how labor force participation is affected when adult children provide informal care to their parents. Data Source Survey of Health, Ageing and Retirement in Europe from 2004 to 2013. Study Design To offset the problem of endogeneity, we exploit the availability of other potential caregivers within the family as predictors of the probability to provide care for a dependent parent. Contrary to most previous studies, the dataset covers the whole working‐age population in the majority of European countries. Individuals explicitly had to opt for or against the provision of care to their care‐dependent parents, which allows us to more precisely estimate the effect of caregiving on labor force participation. Principal Findings Results reveal a negative causal effect that indicates that informal care provision reduces labor force participation by 14.0 percentage points (95 percent CI: −0.307, 0.026). Point estimates suggest that the effect is larger for men; however, this gender difference is not significantly different from zero at conventional levels. Conclusions Results apply to individuals whose consideration in long‐term care policy is highly relevant, that is, children whose willingness to provide informal care to their parents is altered by available alternatives of family caregivers.

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Mobile apps for caregivers of older adults: Quantitative content analysis

Background: Informal caregivers of older adults provide critical support for their loved ones but are subject to negative health outcomes because of burden and stress. Interventions to provide information and resources as well as social and emotional support reduce burden. Mobile apps featuring access to information, assistance with scheduling, and other features can automate support functions inexpensively and conveniently and reach a greater proportion of caregivers than otherwise possible. Objective: The aim of this study was to identify mobile apps geared towards caregivers of older adults, catalog features, and suggest best practices for adoption based on empirical findings of beneficial interventions in the caregiving literature. Methods: Search for apps focused on ones catered for caregivers of older adults in Google Play and iTunes, compiling their features, and identifying features reflecting categories of support identified in successful intervention studies to negative caregiver outcomes. Intervention research indicates that provision of information and resources, assistance in practical problem solving, coordinating care among multiple caregivers, and emotional support reduce caregiver burden. Results: Despite approximately over 200,000 mobile health–related apps, the availability of mobile apps for caregivers is relatively sparse (n=44 apps) as of October 2017. Apps generally addressed specific categories of support, including information and resources, family communication, and caregiver-recipient interactions. Few apps were comprehensive. Only 8 out of 44 (18%) had features that addressed three or more categories. Few apps provided specific stress reduction exercises for caregivers, which is important for reducing burden. Conclusions: Mobile apps have the potential to provide resources, just­-in­-time information for problem-solving, and stress reduction strategies for caregivers. Many apps offer functions that have been shown to reduce burden and improve health outcomes in caregivers, but few provide emotional support. Using an evidence­-based practice approach, mobile apps for caregivers can provide multiple beneficial support functions. Apps can serve a much larger proportion of this highly underserved population in their mobile form than more traditional means, improving their health and quality of life.

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Empowering education of arthroplasty patients' significant others in three Southern European countries

Aims and objectives To examine the relationship between significant others' expected and received knowledge and their background characteristics in three Mediterranean countries (Cyprus, Greece, Spain), all of which deal with economic restrictions, have similar social support systems with the family members acting as family caregivers, and cultural similarities. Background Significant others' role is a key element in the older patients' postoperative recovery. However, people who take care of persons older than 65 years, as persons undergoing arthroplasty, are usually old themselves and need special support. Design Multicentre, descriptive, correlational study. Methods Data were collected preoperatively from 189 and postoperatively from 185 significant others using the Knowledge Expectations and the Received Knowledge of Significant Others Scales during 2010‐2012. Results Approximately one‐fourth of the significant others were older than 65 years. Their knowledge expectations were not adequately addressed in any of the countries they expected to be educated more on biophysiological issues and received the lowest knowledge regarding financial issues. The highest difference between expected and received knowledge was found in Greece and the lowest in Cyprus. Significant others may be less prepared for dealing with situations at home due to the knowledge difference between expected and received knowledge. Conclusions Significant others receive less education comparing to what they expect therefore, they are not prepared for dealing with problematic situations during their old relative's recovery. This is especially important in Mediterranean countries, where family members often provide patient care. Implications for practice As health care is changing towards active participation of patients and family, it is important that nurses provide the education needed, as lower education may lead to poor patient outcomes and higher education may lead to significant others' anxiety. Nurses may keep in mind that older significant others do not report higher knowledge difference, but may have lower expectations.

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Variances in family carers' quality of life based on selected relationship and caregiving indicators: A quantitative secondary analysis

Aims and objectives: To determine subgroups of family carers based on family relational and caregiving variables and to explore group differences in relation to selected carer outcomes. Background: Family caregiving in later life holds a myriad of positive and negative outcomes for family members' well‐being. However, factors that constitute family carers' experience and explain variances are less well understood. Design: A secondary data analysis using cross‐sectional data from a controlled randomised trial with community‐dwelling people 80 years or older and their families. Methods: A total of 277 paired data sets of older persons and their family carers were included into the analysis. Data were collected via mailed questionnaires and a geriatric nursing assessment. A two‐step cluster analysis was performed to determine subgroups. To discern group differences, appropriate tests for differences with Bonferroni correction were used. Results: Two family carer groups were identified. The low‐intensity caregiver group (57% of carers) reported high relationship quality and self‐perceived ease of caregiving. In contrast, the high‐intensity caregiver group (43% of carers) experienced significantly lower relationship quality, felt less prepared and appraised caregiving as more difficult, time intensive and burdensome. The latter cared for older, frailer and more dependent octogenarians and had significantly lower levels of quality of life and self‐perceived health compared to the low‐intensity caregiver group. Conclusions: A combination of family relational and caregiving variables differentiates those at risk for adverse outcomes. Family carers of frailer older people tend to experience higher strain, lower relationship quality and ability to work together as a family. Implications for practice: Nurses should explicitly assess family carer needs, in particular when older persons are frail. Family carer support interventions should address caregiving preparedness, demand and burden, as well as concerns situated in the relationship.

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Caregiving setting and Baby Boomer caregiver stress processes: Findings from the National Study of Caregiving (NSOC)

The aim of this study was to provide a comprehensive understanding of how the caregiving setting relates to caregiving experience among Baby Boomer caregivers (CGs). Based on a secondary data analysis (the National Study of Caregiving, N = 782), compared with CGs providing care to an older adult living in the community, CGs to older adults in non-NH residential care settings reported better emotional well-being, self-rated health, and relationship quality and less provision of assistance older adults with daily activities. While chronic conditions, relationship quality, and financial strain were associated with the health and well-being for both CC groups, degree of informal support was more consequential for the health of CGs providing care to older adults in the community. Our results provide critical information on the risk factors and areas of intervention for both CG groups. 

The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life

Older adults cared for at home by family members at the end of life are at risk for care transitions to residential and institutional care settings. These transitions are emotionally distressing and fraught with suffering for both families and the older adult. A theoretical model titled "The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life" was developed using the method of grounded theory. When a dying parent cannot remain at home to die, family members experience guilt throughout the transition process. Findings indicated that guilt surrounding transfers escalated during the initial stages of the transfer but was mitigated by achieving what family members deemed as a "good" death when relatives were receiving hospice care. The findings of this interpretative approach provide new insights into family-focused perspectives in care transfers of the dying.

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The nutrition and food-related roles, experiences and support needs of female family carers of malnourished older rehabilitation patients

Background: To improve perceived value of nutrition support and patient outcomes, the present study aimed to determine the nutrition and food‐related roles, experiences and support needs of female family carers of community‐dwelling malnourished older adults admitted to rehabilitation units in rural New South Wales, Australia, both during admission and following discharge. Methods: Four female family carers of malnourished rehabilitation patients aged ≥65 years were interviewed during their care‐recipients’ rehabilitation admission and again at 2 weeks post‐discharge. The semi‐structured interviews were audiotaped, transcribed and analysed reflecting an interpretative phenomenological approach by three researchers. A series of ‘drivers’ relevant to the research question were agreed upon and discussed. Results: Three drivers were identified. ‘Responsibility’ was related to the agency who assumed responsibility for providing nutrition support and understanding family carer obligation to provide nutrition support. ‘Family carer nutrition ethos’ was related to how carer nutrition beliefs, knowledge and values impacted the nutrition support they provided, the high self‐efficacy of family carers and an incongruence with an evidence‐based approach for treating malnutrition. ‘Quality of life’ was related to the carers’ focus upon quality of life as a nutrition strategy and outcome for their care‐recipients, as well as how nutrition support impacted upon carer burden. Conclusions: Rehabilitation units and rehabilitation dietitians should recognise and support family carers of malnourished patients, which may ultimately lead to an improved perceived benefit of care and patient outcomes. Intervention research is required to make strong recommendations for practice.

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Challenges in intergenerational caregiving for frail older people: A multiple case study

Families in Taiwan are considered central in caring for frail older people. However, rapid social changes are reshaping Taiwanese family values and structures. In this study, we explored the challenges of intergenerational families in caring for frail older people in Taiwan. Using a multiple-case study, 32 participants representing 12 families comprising three or more generations participated in individual, semistructured interviews. A grounded theory technique was used for the data analysis. Four themes emerged in the findings: intergenerational and intragenerational disharmony, restrictions in the physical environment, financial caregiving burdens, and lack of support from the healthcare system. The findings can help raise awareness of filial caregiving obligations of aging family members that have shifted from a parent-child dyad to being shared across multiple generations in Taiwan. Intergenerational caregiving for frail older people has become a challenge for policies aimed at keeping the aging population in the community.

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Supporting working carers' job continuation in Japan: prolonged care at home in the most aged society

This article concerns new policy challenges relevant to companies in supporting working carers of older people to retain their jobs in Japan. Although long-term leave and flexible working measures have been reformed to address long-term in-home care, the results of new data analysis imply that the effectiveness of support measures differs according to the length of the period of care provided at home. Long-term leave and reducing working hours are effective if the period in which care is provided is relatively short, but when care at home lasts longer, flexibility in the working schedule is crucial. The results also signal the importance of addressing the health of working carers as a new challenge that arises regardless of the length of care at home.

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Family caregiving: Updates from the field

The data on family caregiving is sobering and it behooves all to become familiar with several recent monographs and reports from the field. Happ looks at some reports that provide important data and evidence useful as caregivers develop, test, and implement best, conscientious practices in the discharge of older adults from acute care settings.

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Supporting the critical role of family carers in wellness management

Aging populations, the increased prevalence of chronic disease, and spiraling healthcare costs have led to calls for policy and technology that focuses on wellness management, preventative interventions, and decentralized healthcare. This has prompted several initiatives aimed at empowering individuals to proactively manage their wellness, including employee wellness programmes, step-tracking mobile apps, etc. However, a critical actor in this proposed new healthcare model is the family carer. These individuals are charged with managing outpatients’ wellness, tracking deteriorations, providing support, and even administering routine care in order to minimize and/or delay the need for further clinical intervention. Yet for most people, ‘wellness’ is a poorly understood and ambiguously measured concept. Hence, family carers are often asked to rely upon personal discretion to perform their duties. This paper uses a qualitative case study based on a series of semi-structured interviews to explore how family carers manage this responsibility, the support available to them (technologically and socially), and the challenges they face. It is informed by a research model which combines activity theory and attribute substitution theory in order to make sense of how the diverse actors involved in wellness management (e.g. the family carers, the patients, other family members, clinical/non-clinical healthcare workers) communicate and coordinate. Findings suggest family carers’ role in managing outpatient wellness is hindered by their inability to gather/share key wellness-related information with others involved. The study concludes by calling for better technological infrastructure linking carers with clinical professionals and more standardized information channels between various stakeholders in the caring activity.

  • Illustrates the social and technological complexity of wellness management activities
  • Shows lack of ‘access to’ and ‘sharing of’ wellness related information in such activities
  • Demonstrates the need for development of new ICTs to better support family carers
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The experiences of working carers of older people regarding access to a web-based family care support network offered by a municipality

Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web-based family care support network 'A good place' (AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge Experiencing ICT support as relevant in changing life circumstances and Upholding one's personal firewall. Findings indicate that the web-based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer-based support were barriers to utilising web-based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web-based support to working carers' preferences and situations, web-based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs.

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Formal and informal care of community-living older people: A population-based study from the Swedish National study on Aging and Care

Objectives: Study formal and informal care of community-living older people in the Swedish National study of Aging and Care (SNAC). Design: Cross-sectional, population based cohort. Setting: Three areas in Sweden: Municipality of Nordanstig, Stockholm and Skåne County. Participants: 3,338 persons ≥72 years. Measurements: Patterns and amounts of informal and formal care by cognition and area of residence. Results: 73% received no care; 14% formal care; and 17% informal care (7% received both). In the whole study population, including those who used no care, individuals in small municipalities received 9.6 hours of informal care/month; in mid-size municipalities, 6.6; and in urban areas, 5.6. Users of informal care received 33.1 hours of informal care/month in small municipalities, 54.6 in mid-size municipalities and 36.1 in urban areas. Individuals with cognitive impairment received 14.1 hours of informal care/month, 2.7 times more than people with no/slight impairment. In the whole study population, individuals in small municipalities received an average of 3.2 hours of formal care/month; in mid-size municipalities 1.4; and in urban areas, 2.6. Corresponding figures for formal care users were 29.4 hours in small municipalities, 13.6 in mid-size municipalities and 16.7 in urban areas. Formal care users received 7.1 hours, and informal care users, 5.9 hours for each hour/month received by people in the study population as a whole. Conclusions: More informal than formal care was provided. Informal care is more frequent in small municipalities than urban areas and for those with than without cognitive impairment. The relationship between data on the whole population and the data on users or care indicates that population-based data are needed to avoid overestimates of care.

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Web-based health interventions for family caregivers of elderly individuals: A Scoping Review

Background: For the growing proportion of elders globally, aging-related illnesses are primary causes of morbidity causing reliance on family members for support in the community. Family caregivers experience poorer physical and mental health than their non-caregiving counterparts. Web-based interventions can provide accessible support to family caregivers to offset declines in their health and well-being. Existing reviews focused on web-based interventions for caregivers have been limited to single illness populations and have mostly focused on the efficacy of the interventions. We therefore have limited insight into how web-based interventions for family caregiver have been developed, implemented and evaluated across aging-related illness. Objectives: To describe: a) theoretical underpinnings of the literature; b) development, content and delivery of web-based interventions; c) caregiver usage of web-based interventions; d) caregiver experience with web-based interventions and e) impact of web-based interventions on caregivers’ health outcomes. Methods: We followed Arksey and O’Malley’s methodological framework for conducting scoping reviews which entails setting research questions, selecting relevant studies, charting the data and synthesizing the results in a report. Results: Fifty-three publications representing 32 unique web-based interventions were included. Over half of the interventions were targeted at dementia caregivers, with the rest targeting caregivers to the stroke, cancer, diabetes and general frailty populations. Studies used theory across the intervention trajectory. Interventions aimed to improve a range of health outcomes for caregivers through static and interactive delivery methods Caregivers were satisfied with the usability and accessibility of the websites but usage was generally low and declined over time. Depression and caregiver burden were the most common outcomes evaluated. The interventions ranged in their impact on health and social outcomes but reductions in perception of caregiver burden were consistently observed. Conclusions: Caregivers value interactive interventions that are tailored to their unique needs and the illness context. However, usage of the interventions was sporadic and declined over time, indicating that future interventions should address stage-specific needs across the caregiving trajectory. A systematic review has the potential to be conducted given the consistency in caregiver burden and depression as outcomes.

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Addressing the Challenges of Aging: How Elders and Their Care Partners Seek Information

Purpose: Elders in retirement communities face many challenges concerning information and communication. We know little about whether or how online technologies help meet their medical and social needs. The objective of this study was to gain insights into how these elders and their families manage health information and communication. Design and Methods: Qualitative analysis of 10 focus groups with elders and family members. Participants were 30 elders at least 75 years of age residing in 5 senior living communities in and near Boston, MA, and 23 family members. Results: Elders and families turned first to their personal networks when they needed information or help. They stayed informed about elders’ health primarily by talking directly with providers. They used online resources infrequently, including portal access to medical records. They wanted online access to medication lists and visit notes, up-to-date information about local services and social activities, and a way to avoid the overwhelming nature of Internet searches. Implications: Elders in senior living communities and their families piece together information primarily from word of mouth communication. In the future, electronic social and collaborative technologies may make information gathering easier.

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Residential care and care to community-dwelling parents: out-selection, in-selection and diffusion of responsibility

Research suggests that adult children are less likely to provide care to community-dwelling parents when beds in residential care settings are more widely available. The underlying mechanisms are not well understood. Drawing on data from the Survey of Health, Ageing and Retirement in Europe (SHARE) on 1,214 impaired parent–child dyads from 12 countries, we find that adult children are less likely to provide care in countries where beds in residential care settings are more widely available because (a) parents’ care needs are less severe in such countries (out-selection hypothesis) and (b) adult children and impaired parents are less likely to share a household in such countries (in-selection hypothesis). Finally (c), after taking these two factors into account, adult children remain less likely to provide care in countries where beds in residential care settings are more widely available (diffusion of responsibility hypothesis). Plausibly, being able to rely on residential care undermines adult children's sense of urgency to step in and provide care to their parents.

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Care-related Quality of Life of informal caregivers of the elderly after a hip fracture

Background: Reforms in the Dutch healthcare system in combination with the aging of the population will lead to a strong increase in the demand for informal care in the Netherlands. A hip fracture is one of the most important causes of hospital admissions among frail elderly and informal caregivers experience stress that may have significantly negative impact on the caregivers’ Quality of Life. The purpose of the study was to determine the nature, intensity and the care-related Quality of Life (CarerQoL) of informal caregivers of elderly patients in the first six months after a hip fracture. In this cross-sectional study, were interviewed the primary informal caregivers of patients with a hip fracture about the informal care provided after one, three or six months following the injury. The CarerQoL of the informal caregivers was measured with the CarerQoL-7D instrument. Results: In total, 123 primary informal caregivers were included. The CarerQoL-7D score was on average 83.7 (SD 15.0) after one, three and six months, and there were no major differences between the measurement time points. The average amount of informal care provided per patient per week was 39.5 during the first six months. Partners of patients with a hip fracture provided significantly more hours of informal care (β 34.0; 95% CI: 20.9 – 47.1). Female informal caregivers stated a significantly lower level of CarerQoL (β -7.8; 95% CI: -13.3 – -2.3). Female caregivers were 3.0 times more likely to experience relational problems (aOR 3.02; 95% CI 1.08-8.43). Caregivers provided care at 6 months were associated with physical health problems (aOR 2.54; 95% CI 1.05-6.14). Conclusions: Informal caregivers, especially partners, are faced with providing care of greater intensity to elderly patients during the first six months after a hip fracture. The CarerQoL was not associated with the intensity of the provided informal care. However, this study shows that a considerable group of informal caregivers for elderly patients with a hip fracture experienced relational, physical and mental health problems that stemmed from providing intensive informal care during the first six months.

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The socioeconomic within-gender gap in informal caregiving among middle-aged women: Evidence from a Japanese nationwide survey

Caregiving to older people with needs has been mainly dependent on informal care provision by female caregivers. Compared with the care burden gender gap, the within-gender gap in women's socioeconomic status (SES) has attracted less policy attention. We investigated the association between middle-aged women's SES and the likelihood of being a primary caregiver for elderly informal care, focusing on household income, women's marital status, work status, and educational background under the universal and public system of formal long-term care provision in Japan. We used repeated cross-sectional data from nationally representative household surveys conducted between 2010 and 2013 to obtain a sample of 2399 women aged between 40 and 60 years living in the same household as a care recipient. We conducted multiple logistic regression analysis to obtain odds ratios of being a primary caregiver in the household regressed on women's SES variables, adjusting for the characteristics of care recipients and household composition. The results showed that single women with lower education were likely to be primary caregivers when the care recipients had severe levels of care needs, whereas the association was null in the case of care recipients with milder conditions. The results indicated that women's low education and non-married status were related to a higher likelihood of becoming a primary caregiver of severely disabled elderly for reasons other than lower economic power.To emancipate socioeconomically vulnerable women from the care burden, a broader set of social, economic, and welfare policies are needed.

  • Long-term elderly care has mainly been provided informally by women.
  • Our study focused on unequal burden within women across socioeconomic status (SES).
  • Single women with lower education were at risk of heavier caregiving burdens.
  • A broader policy is needed to reduce SES-bound disparity in women's caregiving.
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Validity and Reliability of the Positive Aspects of Caregiving (PAC) Scale and Development of Its Shorter Version (S-PAC) Among Family Caregivers of Older Adults

Purpose of the Study: To (a) assess the validity and reliability of the 9-item Positive Aspects of Caregiving (PAC) scale among a national sample of caregivers for older adults with functional limitations, (b) develop a shorter version (short-PAC [S-PAC] scale) and assess its psychometric properties, and (c) investigate both scales’ measurement equivalence/invariance (ME/I) across language of administration (Chinese/English/Malay). Design and Methods: Scale/item measurement property assessment, confirmatory factor analysis (CFA), testing the “original” 2-factor model (6 items: first factor; 3 items: second factor), and exploratory FA (EFA) of the 9-item PAC scale was done. Consequently, alternate CFA models were tested. The S-PAC was developed and subjected to CFA. For both scales, convergent (correlation with caregiver esteem) and divergent (correlation with caregiver depressive symptoms) validity, and language ME/I was assessed. Results: For the 9-item PAC scale, the “original” 2-factor CFA model had a poor fit; its EFA and scale/item measurement properties supported a single factor. Among alternate CFA models, a bi-factor model (all nine items: first factor [overall PAC]; six items: second factor [self-affirmation]; three items: third factor [outlook-on-life]) had the best fit. The bi-factor CFA model also had a good fit for the S-PAC scale, developed after eliminating 2 items from the 9-item PAC scale. Both scales demonstrated convergent and divergent validity, and partial ME/I across language of administration. Implications: Both the 9-item PAC and 7-item S-PAC scales can be used to assess positive feelings resulting from care provision among family caregivers of older adults with functional limitations.

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Family and Other Unpaid Caregivers and Older Adults with and without Dementia and Disability

Objectives: To estimate the number of caregivers providing assistance to community‐dwelling older persons with and without dementia and with or without substantial disability; to describe the characteristics of caregivers and care recipients in these groups; to characterize the health‐related tasks that caregivers provide; and to estimate associations between the numbers of tasks and caregiver burden. Design: Nationally representative surveys of caregivers and older adults in the United States. Setting: 2011 National Health and Aging Trends Study and National Study of Caregiving. Participants: Community‐dwelling older adults and their family caregivers, who were selected on the basis of having assisted with mobility, self‐care, household activities, transportation, or medical tasks. Measurements: Caregiver burden (emotional, physical, financial difficulties) and restrictions on social participation. Results: Although much larger proportions of older adults with dementia and disability (98.4%, n = 1.0 million) and dementia but not disability (95.5%, n = 1.3 million) received caregiving assistance, the largest absolute number of individuals receiving assistance were older adults without dementia or disability (4.0 million). Within each caregiver group, caregivers provided assistance with at least one task across domains of activity of daily living and instrumental activity of daily living–related assistance (>98%), health systems logistics (>70%), and health management (>50%). There was a significant linear association between number of tasks provided and risk of burden in virtually all caregiver groups and domains of assistance. Conclusion: Caregivers of care recipients without dementia or disability accounted for the largest absolute number of helpers. These caregivers, similar to caregivers of care recipients with dementia or disability, delivered a broad spectrum of health‐related tasks and experienced caregiver burden and restrictions on social participation. Findings support the need for interventions that address the needs of caregivers who have not typically been defined as high risk.

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Correlates of caregivers' involvement in the management of older adults' medications

Background Family caregivers are actively involved in medication management, yet little is known about factors associated with caregivers' involvement in this role and how that information can be utilized to engage caregivers in the healthcare system. Objectives To explore factors associated with caregiver involvement in various aspects of older adults' medication management (i.e., ordering, keeping track or ensuring the correct medication is taken at the correct time, and injecting medications). Methods A retrospective analysis of two national surveys, the 2011 National Health and Aging Trends Study and the National Study of Caregiving was performed. Multivariate logistic regression models were used to examine the associations between demographic and caregiving variables with caregiver involvement in three medication management activities. Results Approximately two-thirds of family caregivers (N = 1369) were involved in one or more medication management activities. Factors associated with caregivers' assistance with ordering medications included being female, high frequency of involvement in instrumental activities of daily living (IADLs), involvement in medically-related activities, and caring for an older, less educated, or Hispanic care-recipient and individuals with lung disease or dementia (p < 0.05). Caregiver living arrangement, high frequency of involvement in activities of daily living (ADLs) and IADLs, involvement in medically-related activities along with care-recipient's race/ethnicity and having a dementia diagnosis were all associated with caregiver assistance in keeping track of medications (p < 0.05). Factors associated with assistance in injecting medications were caring for older adults with diabetes or stroke, or being involved in medically-related activities (p < 0.05). Conclusions Different demographic and caregiving factors were associated with caregiver involvement in various medication management activities. Recurring factors included race/ethnicity, certain care-recipient disease states, and caregiver involvement in IADLs and medically-related activities. Healthcare providers can play a proactive role in engaging caregivers in discussion about medication management and these findings can help practitioners more effectively target caregivers for education and support.

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Sustainability of Long-term Care: Puzzling Tasks Ahead for Policy-Makers

Background: The sustainability of long-term care (LTC) is a prominent policy priority in many Western countries. LTC is one of the most pressing fiscal issues for the growing population of elderly people in the European Union (EU) Member States. Country recommendations regarding LTC are prominent under the EU’s European Semester.  Methods: This paper examines challenges related to the financial- and organizational sustainability of LTC systems in the EU. We combined a targeted literature review and a descriptive selected country analysis of: (1) public- and private funding; (2) informal care and externalities; and (3) the possible role of technology in increasing productivity. Countries were selected via purposive sampling to establish a cohort of country cases covering the spectrum of differences in LTC systems: public spending, private funding, informal care use, informal care support, and cash benefits.  Results: The aging of the population, the increasing gap between availability of informal care and demand for LTC, substantial market failures of private funding for LTC, and fiscal imbalances in some countries, have led to structural reforms and enduring pressures for LTC policy-makers across the EU. Our exploration of national policies illustrates different solutions that attempt to promote fairness while stimulating efficient delivery of services. Important steps must be taken to address the sustainability of LTC. First, countries should look deeper into the possibilities of complementing public- and private funding, as well as at addressing market failures of private funding. Second, informal care externalities with spill-over into neighboring policy areas, the labor force, and formal LTC workers, should be properly addressed. Thirdly, innovations in LTC services should be stimulated to increase productivity through technology and process innovations, and to reduce costs.  Conclusion: The analysis shows why it is difficult for EU Member State governments to meet all their goals for sustainable LTC, given the demographic- and fiscal circumstances, and the complexities of LTC systems. It also shows the usefulness to learn from policy design and implementation of LTC policy in other countries, within and outside the EU. Researchers can contribute by studying conditions, under which the strategies explored might deliver solutions for policy-makers

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“Self-Employed” in Caregivinghood: The Contribution of Swedish Informal Caregivers’ Environmental and Contextual Resistance Resources and Deficits

Informal caregivers provide the majority of care for older adults residing in their own homes. Caregivinghood, a new evidence-based concept, describes a time of life when relatives provide care at home. These caregivers need knowledge regarding resources to help them resolve the challenges they encounter. The theoretical framework underpinning this study is Antonovsky’s salutogenic theory of health. This study had two aims: (1) to examine the salutogenic core concepts Generalized and Specific Resistance Resources and Deficits (GRRs/SRRs and GRDs/SRDs) described by Swedish informal caregivers as originating from the environmental and contextual domain of caregivinghood and (2) to discuss how this new knowledge might contribute to the development of health promotion initiatives. This qualitative and theory driven study used inductive and deductive data analysis. Data were gathered through salutogenically guided face-to-face interviews of 32 Swedish informal caregivers. In addition, the study relied on the salutogenic core concepts Specific and Generalized Resistance Resources and Deficits originating from their environment and context. Being in empowering surroundings reflects the presence of usable SRRs/GRRs, whereas Struggling in impeding surroundings reflects the presence of SRDs/GRDs. The results indicate that health-enhancing support has to be individualized (SRRs/SRDs) and generalized (GRRs/GRDs). This study’s salutogenic approach and the methodology enhance the understanding of the mechanisms behind the development of Sense of Coherence. The results contribute both empirically and theoretically to strengthen health promotion research and practice when developing activities and support for caregivers in stressful situations, such as informal caregiving.

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Do siblings free‐ride in “being there” for parents?

There is a potential free‐rider problem when several siblings consider future provision of care for their elderly parents. Siblings can commit to not providing long‐term support by living far away. If location decisions are made by birth order, older siblings may enjoy a first‐mover advantage. We study siblings' location decisions relative to their parents by estimating a sequential participation game for U.S. data. We find (i) limited strategic behavior, that is, in two‐child families, more than 92% of children have a dominant strategy, and (ii) a nonnegligible public good problem, that is, in families with multiple children, 18.3% more parents would have had at least one child living nearby had location decisions been made cooperatively.

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Lifting the Burden Formal Care of the Elderly and Labor Supply of Adult Children

We use a reform in the federal funding of care for the elderly in Norway to examine the effects of formal care expansion on the labor supply decisions of middle-aged children. We find a consistent and significant negative impact of formal care expansion on insured work absences for the adult daughters of single elderly parents. This effect is particularly strong for daughters with no siblings, who are also more likely to exceed earnings thresholds after the reform. We find no impacts of the reform on daughters’ mobility or parental health, and no effects on adult sons.

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The Family in Care for the Elderly: Managing the Overload and Coping with Difficulties

Introduction: Family is considered the main support of the elderly in a situation of dependency. Caregiving often results in overloading, leading to diverse problems. Aim: To evaluate the self-perception of the family caregiver’s overload and the strategies used to provide informal care to the dependent elderly considering their level of dependence. Method: The sample consisted of 21 children, 16 spouses, and nine other relatives of elderly dependents who responded to the Caregiver’s Overload Scale (Sequeira, 2007), the Portuguese version of Caregivers’ Assessment Management Index (CAMI, Nolan, Keady, & Grant, 1995) and the Barthel Index (Mahoney & Barthel, 1965). Results: The Barthel Index showed 34.8% of the elderly as severely dependent and 37.0% as totally dependent. The care most provided respected to medication, hygiene, food, and monitoring. Above 56.5% of the caregivers had an intense overload, both at the objective (impact of care and interpersonal relationship) and subjective (F3-Expectations regarding care and F4-Perceived self-efficacy) levels. The main reason for maintaining caregivers was family/personal obligation (95.7%). Caregivers reasonably assessed the effectiveness of their strategies in dealing with their dependent elderly (CAMI M = 101.0, SD = 15.0). There was a negative relationship between the perception of the caregiver’s overload and the age and health status of the elderly, as well as between the number of strategies used by the caregiver to overcome difficulties and the self-perception of the overload. Conclusion: The multiplicity of daily tasks performed in support of a family member in a situation of severe dependence translates into situations of intense overload, negatively impacting on care, interpersonal relationship, expectations regarding caring, and perception of self-efficacy of care.

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Caring for dependent parents: Altruism, exchange or family norm?

The purpose of this paper is to test alternative models of long-term caring motives. We consider three main motives: pure altruism, exchange and family norm. Our database is the second wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) which allows linking almost perfectly and with complete information children and their parents’ characteristics. Comparing the empirical results to the theoretical models developed, it appears that, depending on the regions analyzed, long-term caring is driven by moderate altruism or by family norm, while Alessie et al. (De Economist 162(2):193–213, 2014), also using SHARE data, stress the importance of exchange motive in intergenerational transfers.

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Exposing the Backstage: Critical Reflections on a Longitudinal Qualitative Study of Residents' Care Networks in Assisted Living

In this article, we analyze the research experiences associated with a longitudinal qualitative study of residents’ care networks in assisted living. Using data from researcher meetings, field notes, and memos, we critically examine our design and decision making and accompanying methodological implications. We focus on one complete wave of data collection involving 28 residents and 114 care network members in four diverse settings followed for 2 years. We identify study features that make our research innovative, but that also represent significant challenges. They include the focus and topic; settings and participants; scope and design complexity; nature, modes, frequency, and duration of data collection; and analytic approach. Each feature has methodological implications, including benefits and challenges pertaining to recruitment, retention, data collection, quality, and management, research team work, researcher roles, ethics, and dissemination. Our analysis demonstrates the value of our approach and of reflecting on and sharing methodological processes for cumulative knowledge building.

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Perceived support from a caregiver's social ties predicts subsequent care-recipient health

Most social support research has examined support from an individual patient perspective and does not model the broader social context of support felt by caregivers. Understanding how social support networks may complement healthcare services is critical, considering the aging population, as social support networks may be a valuable resource to offset some of the demands placed on the healthcare system. We sought to identify how caregivers' perceived organizational and interpersonal support from their social support network influences care-recipient health.We created a dyadic dataset of care-recipient and caregivers from the first two rounds of the National Health and Aging Trends survey (2011, 2012) and the first round of the associated National Study of Caregivers survey (2011). Using structural equation modeling, we explored how caregivers' perceived social support is associated with caregiver confidence to provide care, and is associated with care-recipient health outcomes at two time points. All data were analyzed in 2016.Social engagement with members from caregivers' social support networks was positively associated with caregiver confidence, and social engagement and confidence were positively associated with care-recipient health at time 1. Social engagement positively predicted patient health at time 2 controlling for time 1. Conversely, use of organizational support negatively predicted care-recipient health at time 2.Care-recipients experience better health outcomes when caregivers are able to be more engaged with members of their social support network.

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Perceived support from a caregiver's social ties predicts subsequent care-recipient health

Most social support research has examined support from an individual patient perspective and does not model the broader social context of support felt by caregivers. Understanding how social support networks may complement healthcare services is critical, considering the aging population, as social support networks may be a valuable resource to offset some of the demands placed on the healthcare system. We sought to identify how caregivers' perceived organizational and interpersonal support from their social support network influences care-recipient health.We created a dyadic dataset of care-recipient and caregivers from the first two rounds of the National Health and Aging Trends survey (2011, 2012) and the first round of the associated National Study of Caregivers survey (2011). Using structural equation modeling, we explored how caregivers' perceived social support is associated with caregiver confidence to provide care, and is associated with care-recipient health outcomes at two time points. All data were analyzed in 2016.Social engagement with members from caregivers' social support networks was positively associated with caregiver confidence, and social engagement and confidence were positively associated with care-recipient health at time 1. Social engagement positively predicted patient health at time 2 controlling for time 1. Conversely, use of organizational support negatively predicted care-recipient health at time 2.Care-recipients experience better health outcomes when caregivers are able to be more engaged with members of their social support network.

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Gender differences in the long-term care of older parents: evidence from India

This paper examines gender differences in the long-term care of older parents in India by studying the expected provision of care by married sons and daughters. Gender differences in long-term care are important, as the sociocultural environment of India shapes the role of married children. While married sons are expected to provide long-term care for their biological parents, married daughters have limited scope to do so, a tendency that was revealed through our data from Osaka University’s ‘Preference Parameters in India, 2011.’ Other family members are also expected to play a significant role in parental care, while neither gender expects their parents to rely on professional long-term care. This paper contributes to the scarce empirical evidence on long-term care for older parents by married children, as opposed to previous research that has focused on the division of caregiving activities between sons and daughters in general.

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The Mental Health of Children Providing Care to their Elderly Parent

Providing care to a disabled parent can be a psychologically strenuous activity with potential negative consequences for the caregiver's mental health. At the same time, experiencing the declining health of a parent – often the very reason for the parent's care needs – can impact the adult child's mental health negatively. Because both events are usually observed simultaneously, disentangling the “caregiver effect” and the “family effect” remains a challenge. Using longitudinal data of the elderly population in Europe and an instrumental variable approach to address possible endogeneity concerns, this paper separately estimates the effect of caregiving and the decline of a parent's health on adult children's mental health. While I find negative but small caregiver and family effects for the “average” caregiver, the caregiver effect is multiplied for daughters if care provision is triggered by higher parental care needs. 

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The longitudinal association between informal caregiving and body mass index in the second half of life: findings of the German Ageing Survey

Objective We aimed to investigate the relation between informal caregiving and body mass index (BMI) longitudinally. Study designThe data were drawn from wave 2 (2002) to wave 5 (2014) of the German Ageing Survey. This is a representative sample of the community-dwelling population aged 40 years and above in Germany. Methods Self-rated BMI was used. Individuals were asked whether they provide informal care on a regular basis. Adjusting for employment status, age, marital status, morbidity and depressive symptoms, fixed effects regressions were used. Results The fixed effects regressions showed that the onset of informal caregiving was not associated with changes in BMI in the total sample and in women, whereas the onset of informal caregiving was associated with increasing BMI in men (β = 0.15, P < 0.05). In addition, an increase in BMI was positively associated with ageing, an increase in morbidity and a decrease in frequency of sports activities in the total sample and in both sexes. Conclusions Our findings stress the longitudinal relation between informal caregiving and BMI in men. Consequently, it might be helpful to generate weight management strategies specifically designed for male informal caregivers.

  • We examined the longitudinal association between informal care and body mass index (BMI).
  • A representative sample of individuals aged 40 years and above was used (2002–2014).
  • Onset of informal caregiving was not associated with changes in BMI in the total sample and in women.
  • Onset of informal caregiving was associated with increasing BMI in men.
  • Findings are useful to tailor weight management strategies.
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The influence of institutional discourses on the work of informal carers: an institutional ethnography from the perspective of informal carers

Background The growing numbers of seniors worldwide and the need for support and services that follow from a higher standard of living have led to an increased focus on scarce benefits and limited human resources. At the same time, many western countries have had to make welfare cuts to balance budgets. This has brought the contributions of informal carers to the fore. Thus far, the focus has generally been on the need for the informal carers to receive information and support to enable them to contribute. Methods The study is designed as an institutional ethnography. The article describes the social processes of informal caregiving and how it interacts with formal caregiving, from the perspective of informal carers. The research question for the study is How do institutional discourses on the work of informal carers influence informal carework? Data for the article comes from qualitative semi-structured interviews with 26 informal carers caring for persons with dementia in Norway, and with 7 administrators working in the allocation divisions of five different municipalities. Results The results demonstrate how three institutional discourses of informal carers’ work influence the allocation divisions’ practices and the work of informal carers in caring for their next of kin. The three discourses are categorised as moral and family obligation, shared care and task specificity. The informal carers want to contribute, as they feel a family and moral obligation to their next of kin. In the interaction with the allocation division, they find that the expectation that they will share in the carework and perform specific tasks forces them to perform care within a framework set by the public services. Conclusions The findings suggest that further research should challenge how services are distributed and allocated rather than focus on how to enable informal carers to fulfil their role better. Because of their moral and family obligation, the informal carers do not have to be forced to perform certain tasks or parts of the shared care. To maintain the informal carers’ carework and to fully utilise their contributions, public services would benefit from collaborating with the informal carers to fulfil the total care need of the person with dementia.

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Components and Outcomes of Internet-Based Interventions for Caregivers of Older Adults: Systematic Review

Background: When trying to access interventions to improve their well-being and quality of life, family caregivers face many challenges. Internet-based interventions provide new and accessible opportunities to remotely support them and can contribute to reducing their burden. However, little is known about the link existing between the components, the use of behavior change techniques, and the outcomes of these Internet-based interventions.

Objective: This study aimed to provide an update on the best available evidence about the efficacy of Internet-based interventions for caregivers of older adults. Specifically, the components and the use of behavior change techniques and how they impact on the efficacy of the intervention were sought.

Methods: A systematic review searched primary source studies published between 2000 and 2015. Included studies were scored with a high level of evidence by independent raters using the GRADE criteria and reported caregiver-specific outcomes about interventions delivered through the Internet for caregivers of people aged 50 years and older. A narrative synthesis identified intervention components (eg, content, multimedia use, interactive online activities, and provision of support), behavior change techniques, and caregiver outcomes (eg, effects on stressors, mediators, and psychological health). The risk of bias within the included studies was assessed.

Results: A total of 2338 articles were screened and 12 studies describing 10 Internet-based interventions were identified. Seven of these interventions led to statistically significant improvements in caregiver outcomes (eg, reducing depression or anxiety, n=4). These efficacious interventions used interactive components, such as online exercises and homework (n=4) or questionnaires on health status (n=2) and five of them incorporated remote human support, either by professionals or peers. The most frequently used behavior change techniques included in efficacious interventions were provision of social support (n=6) and combinations of instructions to guide behavior change and barrier identification (n=5). The design and aim of the included studies did not permit determining exactly which component and/or behavior change technique was more efficacious in producing positive outcomes in caregivers. The risk for selection bias was low for all the studies, and low to high for performance, detection, and attrition biases.

Conclusions: In sum, Internet-based interventions that incorporate professional and social support, and provide instructions to change behavior and problem solve in an interactive manner appear to lead to positive outcomes in caregivers. Studies isolating the specific effect of components are needed to improve our understanding of the underlying mechanism of action.

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Caregiving and Perceived Generativity: A Positive and Protective Aspect of Providing Care?

Objectives : Although a sizable body of research supports negative psychological consequences of caregiving, less is known about potential psychological benefits. This study aimed to examine whether caregiving was associated with enhanced generativity, or feeling like one makes important contributions to others. An additional aim was to examine the buffering potential of perceived generativity on adverse health outcomes associated with caregiving. Methods : Analyses utilized a subsample of participants (n = 3,815, ages 30–84 years) from the second wave of the National Survey of Midlife Development in the United States (MIDUS). Results : Regression analyses adjusting for sociodemographic factors indicated greater negative affect and depression (p .001) and lower levels of positive affect (p <.01), but higher self-perceptions of generativity (p < .001), in caregivers compared with non-caregivers. This association remained after adjusting for varying caregiving intensities and negative psychological outcomes. Additionally, generativity interacted with depression and negative affect (p values < .05) to lessen the likelihood of health-related cutbacks in work/household productivity among caregivers. Conclusions : Results suggest that greater feelings of generativity may be a positive aspect of caregiving that might help mitigate some of the adverse health and well-being consequences of care. Clinical Implications : Self-perceptions of generativity may help alleviate caregiver burden and explain why some caregivers fare better than others.

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Indirect Fiscal Effects of Long‐Term Care Insurance*

Informal care by close family members is the main pillar of most long‐term care systems. However, due to demographic ageing, the need for long‐term care is expected to increase while the informal care potential is expected to decline. From a budgetary perspective, informal care is often viewed as a cost‐saving alternative to subsidised formal care. This view, however, neglects that many family carers are of working age and face the difficulty of reconciling care and paid work, which might entail sizeable indirect fiscal effects related to forgone tax revenues, lower social security contributions and higher transfer payments. In this paper, we use a structural model of labour supply and the choice of care arrangement to quantify these indirect fiscal effects of informal care. Moreover, based on the model, we discuss the fiscal effects related to non‐take‐up of formal care.

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Caring too much? Lack of public services to older people reduces attendance at work among their children

The need to provide care for older people can put a strain on their adult children, potentially interfering with their work attendance. We tested the hypothesis that public care for older people (nursing homes or home care services) would moderate the association between having an older parent in need of care and reduced work attendance among the adult children. The analysis used data from a survey of Norwegian employees aged 45–65 (N = 529). Institutional care for older people in need of care (i.e. nursing homes) was associated with improved work attendance among their children—their daughters in particular. Data also indicated a moderating effect: the link between the parents’ reduced health and reduced work attendance among the children was weaker if the parent lived in a nursing home. However, the results were very different for home-based care: data indicated no positive effects on adult children’s work attendance when parents received non-institutionalised care of this kind. Overall, the results suggest that extending public care service to older people can improve their children’s ability to combine work with care for parents. However, this effect seems to require the high level of care commonly provided by nursing homes. Thus, the current trend towards de-institutionalising care in Europe (and Norway in particular) might hamper work attendance among care-giving adult children, women in particular. Home care services to older people probably need to be extended if they are intended as a real alternative to institutional care.

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Carers as System Navigators: Exploring Sources, Processes and Outcomes of Structural Burden

Background and Objectives: Structural features of formal care systems influence the amount, difficulty, and complexity of what carers do as they interface with those systems. In this study, we explored how carers navigate health and social care systems, and their experiences of structural burden related to features such as complexity and fragmentation. Research Design and Methods: This qualitative descriptive inquiry drew on data from in-person interviews with 32 carers of older adults, which were analyzed first using inductive thematic analysis and then using structural burden as a conceptual lens. Results:  Participant accounts revealed how navigating formal systems on behalf of older adult family members can exact considerable demands on carers in terms of time investment and emotional energy. In this way, care systems exacerbate the stress and structural burden experienced by carers, even when formal services alleviate other forms of carer burden. Discussion and Implications: Our findings contribute to knowledge of how the structural context of formal services shapes carer experiences and outcomes. To promote equity and prevent burden, system navigation work should be considered as a public, structural issue, rather than an individual-level problem of skills and learning.

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Interconnections Between My Research and Experience as a Caregiver: Impacts on Empirical and Personal Perspectives

Shortly after I received my first R01 grant to study the health effects of caregiving, my sister and I became caregivers to our father. For the next 13 years, we helped him with activities of daily living (ADLs), accompanied him to doctors’ appointments, arranged for home health care, and finally for home hospice. At first, I was able to connect our assistance with ADLs, frustration with coordinating his care, and our psychological stress with my epidemiologic studies. My familiarity with the language of caregiving and long-term care helped us to navigate the medical and home care systems, and to be advocates for my father. However, as my father’s health declined, I felt an increasing disconnect between my research and my experience: communicating with physicians and other care providers, responding to crises and conversations with my sister about placing our father in a nursing home were greater sources of stress than my father’s dementia. These discrepancies made me realize that I could help caregivers more by helping them to negotiate these challenges than through performing quantitative research. So I enrolled in a counseling psychology program. My manuscript will chronicle the ways that caregiving changed me how my professional work did and did not help me as a caregiver how the developmental and family theories that I am learning in my psychology classes have expanded my understanding of stressors facing adult child caregivers, and how this entire experience ties into generativity and Third Chapter careers that build on midlife experiences.

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Effect of caregiving relationship and formal long-term care service use on caregiver well-being

Aim: Despite efforts to revise the traditional long‐term care (LTC) model, informal caregivers continue to provide a substantial amount of support to older adults as front‐line care providers. The present study aimed to understand the effect of informal caregiving on caregivers’ well‐being in Singapore with respect to different types of patient–caregiver relationships. Second, this study examined the association between formal LTC service use and caregivers’ well‐being. Methods: Two waves of data for 781 dyads of patients with LTC needs and their caregivers from a longitudinal study were analyzed. Multilevel regression models were used to examine the association between caregivers’ well‐being (self‐rated general health, stress level and quality of life) and LTC service use among different patient–caregiver relationships. Results: Spousal caregivers reported significantly lower quality of life compared with adult children caregivers. Non‐immediate family caregivers showed better overall well‐being compared with spouse and adult children caregivers. Caregivers of patients referred to nursing homes reported higher levels of stress and poorer self‐rated general health compared with caregivers of patients referred to community‐based services. Spouse and non‐immediate family caregivers of patients who utilized nursing home or home‐based services presented poorer self‐rated general health than caregivers of the patients who did not use any formal services. Conclusions: Developing a better understanding of the associations between well‐being and formal LTC service use for different types of patient–caregiver relationships is critical for policy makers and healthcare providers who aim to create holistic systems of care. 

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Determinants of depression in primary caregivers of disabled older relatives: a path analysis

Background: Despite the large literature analysing factors related to depression, several factors such as caregiving obligation an