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Caring for older people

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

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Problematic caregiving activities among family carers of older adults with disabilities

Background: Family carers of older adults with disability often both experience stress that may affect their ability to provide care, and find some caregiving activities differentially challenging. Objectives: The objectives of this research are to identify the caregiving activities that are most problematic to carers and to explore the reasons why carers found these activities challenging. Methods: Participants were past or current carers aged 19 years and older. Using an explanatory sequential mixed-methods approach, data were collected through a survey and open-ended interviews. Findings: Thematic analysis revealed that an activity was likely to be more problematic if it had to be coordinated with other caregiving needs or where a care recipient's disability was severe.

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Perceptions of and needs for e-Health solutions for elderly people with cognitive impairment, their caregivers and health care providers: A qualitative exploration

BACKGROUND: The prevalence of mild cognitive impairment (MCI) and mild neurocognitive disorder (mNCD) are steadily increasing in Canada. Information and communication technologies (ICTs) in health represent an innovation to promote home care and autonomy for people with various degrees of cognitive impairment. The objective of this study is to develop a web-based multicriteria decision support tool adapted to older adults with MCI or mNCD, their informal caregivers, and health care providers (HCPs) to support the development and implementation of ICTs adapted to the needs and preferences of people with cognitive impairments and their caregivers. METHODS: We used a participatory research strategy to develop of a decision support tool for the use of ICTs focused on the needs of patients, their caregivers, and HCPs. Data collection consisted of semi-structured interviews with elderly people with MCI (N = 10) and caregivers of people with mNCD (N= 7) to explore their current knowledge and perceptions of various ICTs as well as their needs and preferences for such interventions and a focus group with HCPs to understand their perceptions of the needs of seniors with MCI and caregivers of people with mNCD. RESULTS: ICTs are seen as a beneficial solution to promote home care and autonomy for people with cognitive disorders. ICTs provide a sense of security and peace of mind, especially for caregivers of people with mNCD. However, the complexity and high cost of ICTs as well as the lack of support appear to be major limits to their use. HCP recognize the value of e-Health but claim to lack reliable information and were therefore highly unsure to recommend its use. CONCLUSIONS: People suffering from cognitive disorders and their caregivers are generally open to technological developments and favour the use of ICTs. For health professionals, continuous training on ICTs would make them more comfortable to recommend them to patients and their families. Although the use of ICTs is promising for maintaining elderly people with cognitive disorders at home, our study shows that it will be necessary to find ways to make them accessible to promote their use. 

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Participation in Informal Caregiving Among People With Arthritis: Findings From a Canadian Longitudinal Study on Aging

Objective: Despite the joint pain and significant dysfunction that characterizes arthritis, many people with arthritis continue to carry out everyday duties and responsibilities. The objective of the present study was to describe participation in informal caregiving (unpaid assistance to someone with a health issue or limitation) among people with arthritis. Methods: Analysis of baseline data from the Canadian Longitudinal Study on Aging (CLSA), a nationally representative sample of people ages 45–85 years (n = 21,241), was performed. A questionnaire covering sociodemographic, health, and caregiving variables was completed by each study participant. Caregiving variables examined characteristics of the person who received the most care from the questionnaire respondent, as well as the types of caregiving (e.g., hands-on versus hands-off tasks) and amount of care provided (e.g., hours per week). Results: There was no difference in the proportion of people with and without arthritis who provided informal care (46%). Individuals with arthritis reported worse health, but this did not affect the likelihood of providing care, nor the types or amount of care provided. Caregivers with and without arthritis were most likely to provide fewer than 7 hours per week of care, and the most common type of care was characterized as hands-off, particularly transportation assistance. Men were just as likely to provide care as women but were less likely to provide high intensity care or perform hands-on tasks. Conclusion: Despite reporting worse health on average, people with arthritis were just as likely as people without arthritis to provide informal care. The need to provide informal care among people with arthritis may impact their ability to engage in self-management activities for their arthritis. 

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Optimizing the Meaningful Engagement of Older Adults With Multimorbidity and Their Caregivers as Research Partners: A Qualitative Study

Background: It is widely recognized that the engagement of older adults with multimorbidity and their caregivers as partners in health care research is important and invaluable. Objectives: The objective of this study was to examine how researchers can best engage and support older adults with multimorbidity and informal friend or family caregivers of older adults with multimorbidity as research partners in health care research teams. Methods: The persona-scenario method was used for participants to create fictional stories. These stories were analyzed to shed light on specific strategies that can support older adults and caregivers as partners on health care research teams, such as a patient-centered approach, identifying and addressing barriers to engagement, and clarifying roles and responsibilities on the research team. Results and conclusions: The results from this study can be used to inform research, policy, and education on supporting older adults with multimorbidity and caregivers of older adults with multimorbidity as research partners. 

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Involvement, worries and loneliness of family caregivers of people with dementia during the COVID-19 visitor ban in long-term care facilities

Background: To prevent COVID-19 from spreading in long-term care facilities (LTCFs), the Dutch government took restrictive measures, including a visitor-ban in LTCFs. Objectives: This study examined the relationship between involvement of family caregivers (FCs) of people with dementia (PwD) living in LTCFs and FCs mental health during the visitor-ban, and whether this relationship was moderated by the frequency of alternative contact with PwD during the visitor-ban and FC resilience. Methods: This cross-sectional study collected data from 958 FCs. Findings: FCs who visited PwD more frequently before, were more worried during the visitor-ban than those with lower visiting frequency. FCs who visited the PwD daily before, but had minimal weekly contact during the visitor-ban, worried less. Resilient FCs who did social and task-related activities before, experienced less loneliness during the visitor-ban. Conclusions: It is advisable for healthcare professionals to reach out to these groups, to facilitate ongoing contact and help them overcome their loneliness. 

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Intergenerational caring: a systematic literature review on young and young adult caregivers of older people

Background: The theme of young family caregivers of older relatives is still partially uncovered, although the phenomenon is increasing worldwide. This Systematic Literature Review discusses methodological and content issues of ten articles covering this topic, in order to contribute to increase the knowledge and provide suggestions for designing effective support services for adolescent young caregivers. To this purpose, the findings of this review are framed within the caregiving stress appraisal model (renamed CSA model) elaborated by Yates’ and collegues, in order to highlight differences between young caregivers and the older ones. Methods: Multiple databases including PubMed, Web of Science, Scopus, ProQuest - Psychology Database, CINAHL Complete - EBSCOHost were used to carry out a systematic review of the literature. Additional references were retrieved from experts contacted and research knowledge. The selected articles underwent both methodological appraisal and contents analysis: for every article an appraisal score was calculated and themes and sub-themes were identified. Results: Out of the ten included studies three were mixed methods, six qualitative and one quantitative. Nine reached a high quality methodological score and one medium. Four main themes emerged from the content analysis: aspects of the caregiving relationship; effects of caregiving; coping strategies; recommendations for services, policy and research. Conclusions: Selected studies explored practical features of the relationship between young caregivers and older family members (tasks performed, motivations, coping strategies) and highlighted both positive and negative outcomes on young people’s everyday life condition and future development. Nevertheless, these evidences were often limited to small samples that did not allow to make generalizations. More studies are needed including large samples in order to deepen the different aspects of caregiving and design tailored support services. 

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Incorporating young children into family caregiving for people with dementia in Taiwan

Background: Positive attitudes and appropriate knowledge about dementia are essential for the provision of suitable dementia care. Children as future voters may take on a critical role to increase community awareness and knowledge about dementia. Guided by Chinese filial piety cultural virtues, Taiwanese children are taught to respect and care for family seniors and extend this respect to other seniors. Accordingly, young children are considered part of family dementia caregiving system, despite children rarely assume formal caregiver role and not directly provide care work. However, Taiwanese children may possess stigmatized attitudes toward dementia due to a lack of proper dementia knowledge. Research Objective: This study aims to survey Taiwanese children age 9-11 years old attitudes and knowledge to the concepts of dementia. Methods: A total of 312 Taiwanese children from 8 elementary schools in the south Taiwan, aged 9-11 years old, were surveyed to assess their knowledge and attitudes toward dementia. Participants completed The Kids Insight into Dementia (KIDS), which is a 5-scale questionnaire containing three factors, “Personhood”, “Stigma”, and “Dementia Understanding”. The data was analyzed using quantitative method. Results: The results show that Taiwanese children are unfamiliar with dementia as related to brain disease (M= 3.94, SD=2.91), Taiwanese children are unfamiliar about nursing home provision of care (M=3.97, SD=2.17), Taiwanese children do not know the course of dementia disease (M=3.34, SD-1.39). Participants scored high on the question of “people with dementia have hobbies and interests” (M=4.15, SD=1.22); Participants reported that they agreed less often with stigma attached to the people with dementia, including items of “I would feel a bit scared if I met someone dementia in the street” (M=2.70, SD=1.79), ”people with dementia can be creepy” (M=2.18, SD=1.71), “It would be annoying of frustrating to spend time with someone with dementia” (M=2.15, SD=1.17), “It is unlikely that I would meet someone with dementia” (M=2.36, SD=1.27). Conclusions: Our findings suggest that Taiwanese children may express less stigmatized attitudes toward people with dementia and yet they report less understanding of concepts of personhood of people with dementia. Therefore, dementia education is necessary to increase dementia knowledge among school age children in Taiwan.

 

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Income-related inequalities in informal care: Evidence from the longitudinal healthy longevity survey in China

Objectives: This report aims to examine income-related inequalities in informal care among older people with functional limitations in China. Methods: Data are drawn from the 2005, 2008, 2011, and 2014 waves of the Chinese Longitudinal Healthy Longevity Survey. Erreygers concentration index, concentration index, and horizontal inequity index are used to examine inequalities in informal care. A random effects model is then used to investigate the relationship between household income and informal care. Results: There is no significant association between household income and the probability of receiving informal care. However, we observed a significant positive association between household income and hours of informal care received, indicating that those with higher household income receive more hours of informal care compared to those with lower household income. The degree of this inequality increases as the number of functional limitations increases. Discussion: Lower household income is associated with lower intensity of informal care received, particularly for older people with more functional limitations. Policies are required to support low-income older people with more functional limitations. 

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Implementation and dissemination of home and community-based interventions for informal caregivers of people living with dementia: A systematic scoping review protocol

Background: Ageing in place, supported by formal home and community services and informal caregivers, is the most used long-term care option for people with dementia (PwD). Informal caregivers are inundated by their caregiving responsibilities and resultantly suffer consequences. Despite the multitude of clinical effectiveness studies on interventions that support informal caregivers, there is a paucity of information regarding their implementation process. This scoping review aims to identify the implementation strategies, implementation outcomes, and barriers and facilitators that impede or support the dissemination and uptake of interventions that support informal caregivers of PwD at home. Methods and analysis :This protocol is guided by the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) Protocols, and the scoping review will follow the systematic steps of the PRISMA-Extension for Scoping Reviews guideline. The search strategy will include publications produced from inception to 8 March 2021 and will be conducted in the search engines Embase, Medline (Ovid), Web of Science and Cochrane Central Register of Controlled Trials (Wiley), followed by a three-stage approach. First, title and abstracts will be screened by two independent reviewers. Second, full-text articles will also be screened by both reviewers and, in case of disagreement, by a third reviewer. The first two stages are based on a set of inclusion and exclusion criteria. Reference lists of the final included studies will also be checked for relevant articles. Data from the final included studies will be extracted and synthesised using the Expert Recommendations for Implementing Change compilation and Proctor’s implementation outcomes to ensure homogenous and standardised reporting of implementation information. Ethics and dissemination: The review findings will be published in a peer-reviewed journal and disseminated at geriatric and implementation conferences to inform researchers, health service planners and practice professionals with an overview of the existing literature to guide them in the effective implementation of caregiver-focused interventions in dementia support.

 

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The impacts of caregiving intensity on informal caregivers in Malaysia: findings from a national survey

Background: Provision of informal care may adversely affect health, daily and social activities of the informal caregivers, but few studies have examined these effects in relation to caregiving intensity. This study examined the predictive factors associated with the effects of caregiving roles on health, daily and social activities of informal caregivers, accounting for caregiving intensity. Methods: Data of adults aged 18 years and over from the National Health and Morbidity Survey 2019 were used. Respondent’s demographic, socioeconomic, health, and caregiving-related characteristics were described using complex samples analysis. Logistic regression analysis was performed to examine the factors affecting health, daily and social activities of caregivers, accounting for caregiving intensity. Results: Five point one percent of adults in Malaysia provided informal care. High intensity caregivers were more likely to be actively employed and provided longer duration of care compared with low intensity caregivers. For low intensity caregiving, females, those aged 35–59 years, and those with long-term condition were more likely to have negative effects on health. Daily activities of non-Malays were more likely to be affected, while no factor was found significantly associated with effect on social activities. For high intensity caregiving, caregivers aged 60 and over, those received training and those without assistance were more likely to have negative effects on health. Daily activities of those without assistance were more likely to be affected. Social activities of non-Malays, those received training and those providing care for 2 years or more were more likely to be affected. Conclusions: Our study indicates that both low- and high-intensity caregivers have common features, with the exception of employment status and care duration. Caregiving, regardless of intensity, has a significant impact on caregivers. In order to reduce the negative consequences of caregiving responsibilities, all caregivers need assistance from the community and government, that is customised to their needs. By addressing the factors contributing to the negative effects of caregiving, a continuation of informal caregiving can be sustained through policies supporting the growing demand for informal care necessitated by an ageing population and higher life expectancy in Malaysia. 

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Impact of COVID-19 restrictions on carers of persons with dementia in the UK: a qualitative study

Background: informal carers provide the majority of the support for persons with dementia living at home. Restrictions imposed due to COVID-19 have had a profound impact on the daily life of the entire population. This study provides insight into the impact of these restrictions on carers of people with dementia living at home. Methods: qualitative semi-structured interviews. PARTICIPANTS: purposive sample of carers who provide at least 10 hours of care a week for the person with dementia living at home.UK. Results: twenty-three carers were interviewed, and thematic analysis identified three main themes-Changes to daily life, impact on carer health and wellbeing and reduced support from health and social support networks. The results highlight the impact of restrictions imposed on daily life and routines due to the pandemic, wellbeing of carers, reduced social support, lack of access to health and care professionals and respite for carers. The restrictions have had negative consequences on carers' wellbeing, and they have experienced difficulties in accessing formal care services and respite care. Conclusions: carers attempt to continue to provide physical, emotional and practical support for persons with dementia in the community throughout the COVID-19 restrictions. To prevent a future carer crisis, carers need better support systems including formal carer services, telecare solutions that work for them and additional support for respite, as the restrictions from this pandemic continue. 

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Future outlook of people living alone with early-stage dementia and their non-resident relatives and friends who support them

Background: Little is known about the experiences of people living alone with dementia in the community and their non-resident relatives and friends who support them. Objectives: In this paper, we explore their respective attitudes and approaches to the future, particularly regarding the future care and living arrangements of those living with dementia. Methods: The study is based on a qualitative secondary analysis of interviews with 24 people living alone with early-stage dementia in North Wales, United Kingdom, and one of their relatives or friends who supported them. All but four of the dyads were interviewed twice over 12 months (a total of 88 interviews). Findings: In the analysis, it was observed that several people with dementia expressed the desire to continue living at home for 'as long as possible'. A framework approach was used to investigate this theme in more depth, drawing on concepts from the existing studies of people living with dementia and across disciplines. Similarities and differences in the future outlook and temporal orientation of the participants were identified. Conclusions: The results support previous research suggesting that the future outlook of people living with early-stage dementia can be interpreted in part as a response to their situation and a way of coping with the threats that it is perceived to present, and not just an impaired view of time. Priorities for future research are highlighted in the discussion. 

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Family caregivers’ experiences with tele-rehabilitation for older adults with hip fracture

Background: There is a knowledge gap for implementing tele-rehabilitation (telerehab) after hip fracture. We recently conducted a clinical trial (ClinicalTrials.gov Identifier: NCT02968589) to test a novel online family caregiver-supported rehabilitation program for older adults with hip fracture, called @ctivehip. Objectives: In this qualitative substudy, our objective was to use semi-structured interviews to explore family caregivers experience with the telerehab program. Methods: Twenty-one family caregivers were interviewed between three and six months after the older adults completed @ctivehip. One occupational therapist with research and clinical experience, but not involved in the main trial, conducted and transcribed the interviews. We conducted a multi-step content analysis, and two authors completed one coding cycle and two recoding cycles. Results: Family caregivers who enrolled in @ctivehip were satisfied with the program, stated it was manageable to use, and perceived benefits for older adults’ functional recovery after hip fracture. They also suggested im-provements for the program content, such as more variety with exercises, and increased monitoring by health professionals. Conclusions: This work extends existing literature and generates research hypotheses for future studies to test telerehab content and program implementation. 

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Family Caregiver and Provider Perspectives on Inclusive Care: Aligning Needs and Expectations

Background: Home-based and community-based health care for individuals with complex medical conditions is often provided by family caregivers. Yet caregivers often are not meaningfully included in interactions with clinical health care teams. Inclusive care means inviting the caregiver to participate in shared decision-making and treatment planning. For aging or medically vulnerable adults, caregiver inclusion is an important facet of patient-centered care. Methods: We apply a mixed-methods approach using a survey (n=50) and semistructured interview data (n=13) from a national sample of caregivers of veterans and semistructured interview data from (n=24) providers from 3 Veterans Affairs regional networks. We elicited data from caregivers about their experiences with inclusive care and how providers communicate with them and assess their capacity. We juxtaposed these data with provider perspectives to see where there was alignment. Findings: We determined that caregivers play important roles in trust-building, communications management, implementation of care plans at home or in the community, and improving the care of care recipients-while maintaining a balance between competing tensions. Conclusions: Our findings suggest that expanding inclusive care could improve care quality and health outcomes of individuals with complex health care needs. Further, our findings bolster recent policy efforts at the federal and state levels to increase recognition of caregivers as key members of the health care team. 

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Factors Influencing Implementation of eHealth Technologies to Support Informal Dementia Care: Umbrella Review

Background: The worldwide increase in community-dwelling people with dementia underscores the need for innovative eHealth technologies that aim to provide support to both patients and their informal caregivers in the home setting. However, sustainable implementation of eHealth technologies within this target group can be difficult. Objective: The goal of this study was to gain a thorough understanding of why it is often difficult to implement eHealth technologies in practice, even though numerous technologies are designed to support people with dementia and their informal caregivers at home. In particular, our study aimed to (1) provide an overview of technologies that have been used and studied in the context of informal dementia care and (2) explore factors influencing the implementation of these technologies. Methods: Following an umbrella review design, five different databases were searched (PubMed, PsycINFO, Medline, Scopus, and Cochrane) for (systematic) reviews. Among 2205 reviews retrieved, 21 were included in our analysis based on our screening and selection procedure. A combination of deductive and inductive thematic analyses was performed, using the Nonadoption, Abandonment, Scale-Up, Spread, and Sustainability (NASSS) framework for organizing the findings. Results: We identified technologies designed to be used “by informal caregivers,” “by people with dementia,” and “with people with dementia.” Within those groups, most of the represented technologies included, respectively: (i) devices for in-home monitoring of lifestyle, health, and safety; (ii) technologies for supporting memory, orientation, and day structure; and (iii) technologies to facilitate communication between the informal caregiver and person with dementia. Most of the identified factors influencing implementation related to the condition of dementia, characteristics of the technology, expected/perceived value of users, and characteristics of the informal caregiver. Considerably less information has been reported on factors related to the implementing organization and technology supplier, wider institutional and sociocultural context of policy and regulations, and continued adaptation of technology over time. Conclusions: Our study offers a comprehensive overview of eHealth technologies in the context of informal dementia care and contributes to gaining a better understanding of a broad range of factors influencing their implementation. Our results uncovered a knowledge gap regarding success factors for implementation related to the organizational and broader context and continuous adaptation over the long term. Although future research is needed, the current findings can help researchers and stakeholders in improving the development and implementation of eHealth technologies to support informal dementia care.

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Factors associated with informal caregiving and its effects on health, work, and social activities of adult informal caregivers in Malaysia: findings from the National Health and Morbidity Survey 2019

Background: The increase in the elderly population, chronic and degenerative diseases, as well as accidents at work and on the road in Malaysia would result in an increased demand for informal care. Objectives: This paper aimed to determine the associated factors of informal caregiving and its effects on health, work and social activities of adult informal caregivers in Malaysia. Methods: The data from the 2019 National Health and Morbidity Survey (NHMS), a nationwide cross-sectional survey with a two-stage stratified random sampling design, was used in this research. The study included respondents who were 18 years and older (n = 11,674). Data were obtained via face-to-face interviews using validated questionnaires. Descriptive and complex sample logistic regression analyses were employed as appropriate. Results: 5.7% of the adult population were informal caregivers. Provision of informal care were significantly associated with the female sex (OR = 1.52, 95% CI [1.21, 1.92]), those aged 36–59 years (OR = 1.61, 95% CI [1.15, 2.25]), and those who reported illness in the past 2 weeks (OR = 1.79, 95% CI [1.38, 2.33]). The risk of having their health affected were associated with female caregivers (OR = 3.63, 95% CI [1.73, 7.61]), those who received training (OR = 2.10, 95% CI [1.10, 4.00]) and those who provided care for 2 years or more (OR = 1.91, 95% CI [1.08, 3.37]). The factors associated with the effects on work were ethnicity, received training and had no assistance to provide the care. In terms of effect on social activities, female caregivers (OR = 1.96, 95% CI [1.04, 3.69]) and caregivers who received training were more likely (OR = 2.19, 95% CI [1.22, 3.93]) to have their social activities affected. Conclusion: Our study revealed that sex, age, and self-reported illness were factors associated with being an informal caregiver in Malaysia. Informal caregivers faced effects on their health, work, and social activities which may be detrimental to their well-being. This understanding is crucial for planning support for caregivers.

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Informal Caregivers' Perspectives on the Mandated No Visitation Policy During COVID-19 Pandemic in Long-Term Care: A Qualitative Study

Background: The current descriptive qualitative study aimed to explore how informal caregivers of persons residing in long-term care (LTC) facilities are coping with the no visitation policy during the coronavirus disease 2019 (COVID-19) pandemic. Methods: Semi-structured interviews were conducted approximately 1 month after the no visitation policy was implemented. Interview questions explored how informal caregivers are feeling, coping, and staying connected and involved with loved ones residing in LTC. Recruitment (N = 14) occurred through social media, email, and word of mouth. To maintain social distance and reduce transmission risk, interviews were conducted by phone. Findings: Through systematic data reduction, six themes emerged: (a) Reminiscing About Life Before COVID-19, (b) Feelings Related to Physical Separation, (c) Our Loved Ones Are Lonely and Don't Understand, (d) Creating Ways to Stay Connected, (e) Recognition and Concern for LTC Staff, and (f) Coping During Future No Visitation Mandates. Conclusions: Results of this study may assist LTC administrators and nurses if no visitation policies are required in the future.

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Relationship between expression of gratitude by home-based care receivers and caregiver burden among family caregivers

Backgrounds: We focused on the frequency of “gratitude” expressed by home-based care receivers towards family caregivers before they were in the condition that needed care and investigated the relationship with caregiver burden. Methods: This cross-sectional online survey was completed by 700 family caregivers in Japan. Caregiver burden was assessed using the Zarit Burden Interview. Caregivers with a score of ≤ 19 were defined as having mild caregiver burden, those with a score of 20 to 38 as having moderate, and those with a score of > 38 as having severe. Additionally, caregivers were asked, “How often did you get a ‘thank you’ from your care receiver before they were in a condition that needed care?” Answers were scored using a 11-point Likert scale. Answers with scores 0-2 were defined as low frequency of gratitude, 3-6 as middle, and 7-10 as high. Results: Among all caregivers, 233 (33.3%), 229 (32.7%) and 238 (34.0%) accounted for having mild, moderate and severe caregiver burden, respectively. High frequencies of gratitude of 48.9%, 43.7%, and 39.1%, respectively, were concluded with a significantly higher rate in the mild than in the severe caregiver burden group (p = 0.03). The results of multinominal logistic regression analysis, even after adjusting for several factors, show that high frequency of gratitude was significantly associated with caregiver burden (p < 0.01, OR: 0.48, 95%CI: 0.28-0.81). Conclusions: We found the frequency of gratitude from the care receiver before they were in the condition that needed care was substantially associated with caregiver burden. 

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Juggling paid work and elderly care provision in Japan: Does a flexible work environment help family caregivers cope?

Objectives and methods: Using unique data from a Japanese survey, this paper examines whether flexible work arrangements targeted specifically at workers with caregiving responsibilities under the Child Care and Family Care Leave Act help family caregivers reconcile paid work with care provision. Results: The regression results suggest that access to caregiver leave, which allows family caregivers to take a continuous leave of up to 93 days, is negatively and significantly associated with the probability of leaving one's job within one year of the onset of demand for parental care. This alleviating effect of access to caregiver leave remains robust even in the longer term and in a specification where we take into account the possible endogeneity of care provision to the labor supply decision. Conclusions: The findings of this paper thus suggest that the caregiver leave introduced pursuant to the Act in Japan helps meet the need of family caregivers to take a certain period of time off from work to make the necessary arrangements for accommodating the sudden and unexpected demand for elderly care in their daily lives. 

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Remote activity monitoring for family caregivers of persons living with dementia: a mixed methods, randomized controlled evaluation

Background: The goal of the present study was to determine whether a remote activity monitoring (RAM) system benefited caregivers who aided relatives with Alzheimer’s disease or related dementias (ADRD) living at home. We hypothesized that over 18 months, families randomly assigned to receive RAM technology in the home of the person with ADRD would experience statistically significant (p <.05): 1) improvements in caregiver self-efficacy and sense of competence when managing their relative’s dementia; and 2) reductions in caregiver distress (e.g., burden, role captivity, and depression). Methods: An embedded mixed methods design was utilized, where 179 dementia caregivers were randomly assigned to receive RAM or not. Caregivers were surveyed bi-annually over an 18-month period to collect quantitative and qualitative data on RAM’s effects. Semi-structured interviews with 30 caregivers were completed following the 18-month data collection period to explore more in-depth how and why RAM was perceived as helpful or not. Results: Growth curve models showed no direct or moderation effect of RAM on dementia caregiver outcomes. The qualitative data revealed a complex utilization process of RAM influenced by the care environment/context as well as the temporal progression of ADRD and the caregiving trajectory. Conclusions: The findings suggest the need for developing more effective mechanisms to match appropriate technologies with the heterogeneous needs and care contexts of people living with ADRD and their caregivers. A triadic approach that incorporates professional care management alongside passive monitoring systems such as RAM may also enhance potential benefits. Trial registration: ClinicalTrials.govNCT03665909, retrospectively registered on 11 Sept 2018. 

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Satisfaction with caregiving among informal caregivers of elderly people with dementia based on the salutogenic model of health

Objectives: The main objective was to analyze the variables Sense of Coherence, Resilience and Emotional Regulation as predictors of satisfaction with care in caregivers of older adults people with dementia. Methods: An ex post facto cross-sectional study design with a single group. The data were collected between June and October 2020.63 caregivers of older adults people with severe dementia participated, by responding to questionnaires concerning the study variables during a telephone interview. Information was also collected regarding the characteristics of the care provided (years of evolution, degree of dementia, index of independence) and regarding the caregiver (age and years of caregiving) which will be analyzed as control variables. The data were analyzed using correlation analysis and multiple linear regression analysis. Results: The participants presented average levels for Sense of Coherence, Resilience, Emotional Regulation (M = 16.93) and a high degree of Satisfaction with care. Sense of Coherence was the main predictor of Satisfaction with care, explaining up to 67% of the variance, through its Significance and Comprehensibility dimensions. Although the Resilience variable presented a significant association with Satisfaction, its role in the predictive model was displaced by Sense of Coherence. Conclusions: Sense of Coherence and Resilience are relevant psychological variables because of their positive relationship with satisfaction with care among caregivers of older adults people with dementia. The caregivers' perception of the significance and comprehensibility of the situation are important positive predictors of their satisfaction with the care of older people with dementia. These results are suggestive to guide the follow-up and psychological support of caregivers. 

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Family caregivers for older persons with dementia offer recommendations to current caregivers: a qualitative investigation

Background and aims: Family members who care for older adults with dementia encounter significant difficulties across many domains. There is limited research in this area; thus, the aim here is to share the actual experiences of 30 family caregivers to other family caregivers and to show how these experiences can provide help and recommendations. Methods: This qualitative study of 30 family caregivers of family members aged 65 and older who died with dementia-related diagnoses used in-depth qualitative interviews conducted over a 12-month period for data collection and content analysis to understand the data. The study asked what they learned and what subsequent recommendations these caregivers had for other family caregivers taking care of an older person with dementia. Results: Four primary themes emerged from the content data analysis and included the following: (1) “do not do it alone”; (2) patience, love, and kindness; (3) “first of all, take care of yourself”; and (4) “get educated.” Conclusions: This study is unique in asking directly of family caregivers of older persons who died of dementia what they learned and what they want to share and recommend to ongoing and future family caregivers. 

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Family Caregiver Perspectives on Benefits and Challenges of Caring for Older Adults With Paid Caregivers

Background: Many older adults receive help from both family caregivers and home care workers. We aimed to understand family caregivers’ perspectives on home care workers. Methods: This qualitative study took place at an academic medical center in New York, N.Y. We interviewed family caregivers of community-dwelling older adults about their experiences with home care workers. We analyzed transcripts thematically. Results: We interviewed 17 family caregivers and identified four major themes: (a) home care workers provide functional and emotional support; (b) home care is logistically challenging; (c) finding the right fit between home care workers, older adults, and families is essential; and (d) home care workers and family caregivers coordinate care well beyond the initiation of home care. Conclusion: Despite its logistical challenges, home care benefits patients and family caregivers. Given the growing prevalence of caregiving, clinicians and family caregivers might benefit from training and support about working with home care workers. 

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Taking a Break: Daily Respite Effects of Adult Day Services as Objective and Subjective Time Away From Caregiving

Background and Objectives: Adult day services (ADS) can provide emotional and physical relief for caregivers of persons with dementia. While prior studies conceptualized ADS use at the aggregate level as a dichotomous construct, little is known about objective and subjective respite as distinct constructs. This study investigated how objective and subjective breaks from caregiving were associated with caregivers' daily emotional well-being. Research Design and Methods: Family caregivers (N = 173) whose relatives were using ADS at least twice a week participated in daily interviews over 8 consecutive days (day N = 1,359). Participants provided information on daily respite hours and daily affect. They also reported perceived frequency of breaks from caregiving responsibilities and primary and secondary caregiving stressors (i.e., overload and work conflict). Multilevel models were used to examine the research questions. Results: On average, caregivers reported 7.12 respite hours on ADS days and 1.74 respite hours on non-ADS days. Having more objective respite was associated with higher positive affect, whereas more subjective respite was associated with lower negative affect, after controlling for ADS use and other covariates. Further, caregivers with greater work conflict experienced more benefits to their positive affect as a result of objective respite. Discussion and Implications: Objective and subjective respite are unique aspects of caregiving that may have varying impact on caregivers. Respite may be especially beneficial for caregivers experiencing conflict between work and caregiving.

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Exploring experiences of family caregivers for older adults with chronic illness: A scoping review

Background and objectives: A Scoping Review was conducted to explore key issues that underpin the experiences of family caregivers of older adults with chronic illness. The review aims to identify the gap in literature and synthesise evidence on this topic. Globally, family caregivers of older adults with chronic illness experience burden. Evidence suggests that family caregivers’ needs are poorly understood and remain largely under recognised by healthcare services. Moreover, little is known about the experience of family caregivers caring for older adults with multiple chronic conditions. Methods: Data bases used included: (EBSCOhost, CINAHL, Science Direct, SCOPUS, MEDLINE, PubMed, ISI web of science and grey literature. 3352 records were identified, 58 full-text articles were assessed for eligibility, and 11 papers included in the literature review. Data are narratively synthesized. Conclusions: This review provides findings that suggest further research. 

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The early stages of caregiving: A qualitative study into the caregiving experiences of Asian family caregivers of persons with newly-diagnosed dementia

Background: In Asian societies, the responsibility of caring for persons with dementia often falls upon an immediate family member. However, little attention has been paid to the early stages of caregiving, as well as their transition into a more experienced caregiver. Methods: Thus, a qualitative descriptive study involving a purposive sample of 11 main family caregivers of a person with newly diagnosed dementia was recruited from a tertiary hospital in Singapore. Findings: Three themes emerged from the data analysis: (1) Suspicions to seeking confirmation of dementia, (2) Grappling with dementia diagnosis, and (3) Making adjustments for the future. Areas of needs and support identified during the early caregiving journey suggest the need for caregivers to be prepared for the practical and emotional challenges. Conclusions: Unique to the Asian culture, our findings put forth the advocacy of engaging persons with dementia in the discussions of their long-term care and options. 

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The 4Ms of an Age-Friendly Health System

This article is the first in a new series, Supporting Family Caregivers in the 4Ms of an Age-Friendly Health System, published in collaboration with the AARP Public Policy Institute as part of the ongoing Supporting Family Caregivers: No Longer Home Alone series. The 4Ms of an Age-Friendly Health System (What Matters, Medication, Mentation, and Mobility) is an evidence-based framework for assessing and acting on critical issues in the care of older adults across settings and transitions of care. Engaging the health care team, including older adults and their family caregivers, with the 4Ms framework can help to ensure that every older adult gets the best care possible, is not harmed by health care, and is satisfied with the care they receive.The articles in this new series present considerations for implementing the 4Ms framework in the inpatient hospital setting and incorporating family caregivers in doing so. Resources for both nurses and family caregivers, including a series of accompanying videos developed by AARP and the Rush Center for Excellence in Aging and funded by the John A. Hartford Foundation, are also provided. Nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet—Guide to the 4Ms of an Age-Friendly Health System for Family Caregivers—and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

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Factors influencing caregiver burden by dementia severity based on an online database from Seoul dementia management project in Korea

Backgrounds: As the prevalence of dementia rises, caregiver burden also increases in South Korea, especially for informal family caregivers. Objectives: This study aimed to analyze factors affecting caregiver burden by the severity of dementia based on data of patients in Seoul. Methods: A total of 12,292 individuals aged ≥65 years enrolled in the Seoul Dementia Management Project from 2010 to 2016 in an online database were selected. Caregiver’s burden was assessed using the Korea version of Zarit Burden Interview. Multiple regression analyses were performed to determine factors associated with primary caregiver’s burden after stratifying the severity of dementia. Results: Most patients showed moderate levels of cognitive impairment (49.4%), behavior problems (82.6%), and ADL dependency (73.6%). After stratifying the severity of dementia, caregivers caring for patients with mild symptoms of dementia were experienced with higher caregiver burden if patients were under a lower score of IADL. Significant factors for caregiver burden among caregivers supporting patients with moderate symptoms of dementia include caregivers’ residence with patients, subjective health status, and co-work with secondary caregivers. Lastly, caregivers for patients with severe dementia symptoms experienced a higher caregiver burden from limited cognitive function, problematic behavior, and caregivers’ negative health status. Conclusion: In terms of sample size, this study had far more patients than any other domestic or international study. It was meaningful in that it analyzed characteristics of patients with dementia and caregivers affecting the burden of caregivers in Korea. Intensive social supports with multiple coping strategies focusing on different levels of patients’ clinical symptoms and caregivers’ needs should be planned to relieve the caregiver burden. 

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Support system diversity among family caregivers of stroke survivors: a qualitative study exploring Asian perspectives

Background: Caregiving is a global phenomenon which is bound to increase in tandem with the aging population worldwide. Stroke is a condition common in older people that requires complex caregiving necessitating provision of adequate support to the caregivers. Past literature consists of limited accounts of types and organization of support arrangements needed by different caregivers. Objectives: We aimed to describe the support system of caregivers of stroke survivors in Singapore, highlighting differences across the different caregiver identities (i.e. spouse, adult-child, etc.). Methods: We conducted a qualitative descriptive study in the community setting involving 61 purposively sampled and recruited stroke survivors and caregivers. Semi-structured interviews were conducted, and transcripts were analysed using thematic analysis. Results: Our findings were summarized across the following 4 themes: 1) cultural influence and caregiving; 2) caregiver support system with the following sub-themes: 2.1) dyadic caregiver support type, 2.2) extended caregiver support type, 2.3.) distributed caregiver support type and 2.4) empowering caregiver support type; 3) breaks in care of stroke survivor and 4) complex relationship dynamics. We operationalized the caregiver support system as comprising of type, people and activities that enable the caregiver to participate in caregiving activities sustainably. While spouse caregivers preferred dyadic and extended support systems positioning themselves in a more central caregiving role, adult-child caregivers preferred distributed support system involving family members with paid caregivers playing a more central role. Conclusions: Our findings highlight caregiver identity as a surrogate for the differences in the caregiver support systems. Practical implications include imparting relationship-building skills to the stroke survivor-caregiver dyads to sustain dyadic support system and educating clinicians to include differences in caregiving arrangements of stroke survivors in practising family-centred care. 

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The Role of Family Caregivers in the Care of Older Adults with Cancer

Objectives: To provide an overview on the role of family caregivers (FCGs) in the care of older adults with cancer and review quality of life needs for FCGs. Data Sources: Journal articles, research reports, state of the science papers, position papers, and clinical guidelines from professional organizations were used. Conclusion: The high prevalence of multiple comorbidities and the associated burden of geriatric events in older adults have a substantial impact on the quality of life of their FCGs. Practical and efficient models of comprehensive assessment, interventions, and caregiving preparedness support are needed to improve outcomes for both older adults with cancer and their FCGs. Implications for Nursing Practice: Oncology nurses practicing in clinical and research settings have a responsibility to prepare themselves with evidence-based knowledge and resources to include the needs of FCGs in the care provided to older adults with cancer. 

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eHealth Literacy and Caregiver Burden Among Chinese Caregivers of Older Adults With Cognitive Impairment: Does Education Matter?

Background: eHealth literacy is a critical factor that influences caregivers’ well-being. Objective: The purpose of this study is to examine the association between eHealth literacy, education, and caregiver burden among Chinese caregivers of older adults with cognitive impairment. Methods: Data came from structured interviews with 300 primary family caregiver–care recipient dyads in Wuhan, China. We used logistic regression to examine the association between eHealth literacy, education, and caregiver burden. Results: An interaction effect between eHealth literacy and education on caregiver burden was identified. eHealth literacy was positively associated with caregiver burden among caregivers with less than a high school education, but not among those with a high school education or above. eHealth literacy is salient in the burden experienced by caregivers with low education. Conclusions: eHealth literacy needs to be enhanced with health information verification from health professionals and programs to support caregiving efficacy to realize its positive impact on caregivers’ mental health. 

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Effects of the tailored activity program (TAP) on dementia-related symptoms, health events and caregiver wellbeing: a randomized controlled trial

Background: People living with dementia (PLWD) and caregivers are adversely impacted by lack of meaningful activity leading to worse symptoms and impaired quality-of-life. There is a critical need to develop effective and well-tolerated treatments that mitigate clinical symptoms, engage PLWD and support caregiver wellbeing. We tested whether, compared to attention control, the Tailored Activity Program (TAP) reduced clinical symptoms and health-related events, and improved caregiver wellbeing, and if TAP activities were well-tolerated. Methods: We conducted a single-blind randomized controlled trial among 250 dyads recruited from Baltimore-Washington DC (2012–2016) with a dementia diagnosis and clinically significant agitation/aggression. Dyads were randomized to TAP (n = 124) or attention control (n = 126), and interviewed at baseline, 3 (endpoint) and 6-months (follow-up) by interviewers masked to group allocation. TAP assessed PLWD abilities/interests, instructed caregivers in using prescribed activities, and provided dementia education and stress reduction techniques. Attention controls received disease education and home safety tips. Both groups had up to 8 home visits over 3-months. The primary outcome was frequency by severity scores for agitation/aggression subscales of Neuropsychiatric Inventory-Clinician using caregiver ratings. Secondary outcomes included number of instrumental (IADL) and activities of daily living (ADL) needing assistance, caregiver wellbeing, and confidence using activities. Health-related events (PLWD death, hospitalizations, caregiver hospitalization, depression) and perceived study benefits were captured over 6 months. PLWD tolerability of prescribed activities was examined. Results: Of 250 dyads, most caregivers were female (81.2 %, n = 203), non-spouses (54.4 %, n = 136), white (59.2 %, n = 145) or African American (36.7 %, n = 90) with mean age = 65.4 (SD = 12.6). PLWD were mostly female (63.2 %, n = 158) with mean age = 81.4 (SD = 7.9), and mean MMSE = 14.3 (SD = 7.8). At 3-months, compared to controls, TAP conferred no benefit to agitation/aggression (p = 0.43, d = 0.11), but resulted in less IADL (p = 0.02, d=-0.33), and ADL (p = 0.04, d=-0.30) assistance, improved caregiver wellbeing (p = 0.01, d = 0.39), and confidence using activities (p = 0.02, d = 0.32). By 6-months, 15 PLWD in TAP had ≥ 1 health-related event versus 28 PLWD in control, demonstrating 48.8 % improvement in TAP (p = 0.03). TAP caregivers were more likely to perceive study benefits. Prescribed activities were well-tolerated. Conclusions: Although TAP did not benefit agitation/aggression, it impacted important outcomes that matter to families warranting its use in dementia care. Clinical trial registration: Clinicaltrials.gov # NCT01892579 at https://clinicaltrials.gov/; Date of clinical trial registration: 04/07/2013; Date first dyad enrolled: 15/11/2013. 

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Effects of a social support family caregiver training program on changing blood pressure and lipid levels among elderly at risk of hypertension in a northern Thai community

Background: Hypertension is becoming increasingly prevalent among the elderly. Family caregivers play an important role in caring for elderly people and empowering them to care for themselves. Objectives: This study’s goal was to see how social support training for family caregivers affected changes in hypertension, total cholesterol, and high-density lipoprotein (HDL), and how such support led to the prevention of hypertension behaviors among the elderly in rural areas. Methods: This was a quasi-experimental study with 268 elderly people at risk of hypertension and their caregivers. Sixty seven pairs of elderly people and their caregivers were assigned to the intervention and control groups. Baseline data were collected in November 2020. The intervention group received the Social Support Family Caregiver Training Program (SSFCTP), while the control group received a regular program from the local health authority. The activity lasted 12 weeks, with home visits and telephone check-ups along the way, and data collection took place after the program ended. The final data were collected three months after the end of the intervention. Results: An analysis of repeated measures ANOVA showed the overall effect of the SSFCTP on knowledge, self-efficacy, health care behaviors, and blood pressure among elderly people during three different time periods (p<0.05). Furthermore, the intervention program had a time-dependent effect on knowledge, blood pressure, and total cholesterol levels (p<0.05). In terms of caregiver outcomes, there was an overall difference among the degrees of knowledge, self-efficacy, and behaviors toward health care displayed by elderly hypertensive patients during the three different time periods (p<0.05). The average knowledge and self-efficacy of the participants improved after the intervention. As a result, better self-care behaviors and lower blood pressure and total cholesterol levels were observed among the elderly participants after the intervention. Conclusions: The programs emphasized the importance of caregivers’ roles in providing social support, boosting confidence, and encouraging participation in caring, monitoring, and assisting the elderly in controlling blood pressure and other health issues.

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Effectiveness of a mindfulness-based intervention program for women family caregivers of older adults

Background: The objective of this study was to analyze the effectiveness of a mindfulness-based intervention program for the promotion of well-being and health in family caregivers. Methods: The participants were 111 family women caregivers aged between 33 and 75 years old. This was a double-blinded randomized controlled trial. The mindfulness intervention program lasted 12 weeks. The experimental group underwent mindfulness and acceptance-based interventions (MABIs). The control group performed physical activity training. Results: A cross-lagged panel analysis was computed with the two waves of health, well-being, burden and resilience and age in years and intervention as predictors. The cross-lagged path model fit well χ2 (8) = 7.179, p = 0.51, root mean square error of approximation (RMSEA) = 0.00, comparative fit index (CFI) = 1.00, standardized root mean square residual (SRMR) = 0.05. The mindfulness intervention program was a significant predictor accounting for decreasing health problems (β = −0.292, p &lt; 0.01) and burden (β = −0.190, p &lt; 0.01) and increasing well-being (β = 0.107, p &lt; 0.05) at post-test. Conclusions: Mindfulness-based intervention programs are effective in coping with the burden of family caregivers and, in turn, in promoting resilience, well-being and health among caregivers. Our findings encourage clinical uses of mindfulness interventions to promote health. 

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Effect of Employment Status on the Association Among Sleep, Care Burden, and Negative Affect in Family Caregivers

Objective: To examine the effect of employment status on sleep, care burden, and negative affect among family caregivers (FCs) at home. Methods: An intensive longitudinal design was applied in which 25 FCs underwent in-home assessments for up to 56 days. At baseline, demographic data and employment status were collected. FCs wore a wrist-worn device with an accelerometer to assess objective total sleep time (TST) for consecutive 24-hour periods. FCs answered the Zarit Burden Interview (ZBI) and Positive and Negative Affect Schedule (PANAS) every night before sleep. Linear mixed model analysis was used to examine the effect of objective sleep status on ZBI and PANAS scores the following day. Results: Mean participant age was 66.3 ± 10.8 years (72.0% female), and mean survey period was 29.1 ± 9.6 days (866 observations). Mean TST of FCs was 5.7 ± 1.4 hours. In total, 32.0% of FCs were employed either full- or part-time. TST of employed FCs was significantly associated with care burden and negative affect (B = −0.4 and −1.3, respectively); however, positive affect was not associated with TST. FCs who were unemployed experienced less care burden and negative affect (rate of change: −7.7 and −8.0, respectively). Additionally, TST of unemployed FCs was associated with negative affect; thus, when they slept 1 hour longer than their mean TST, they experienced less negative affect the following day. Conclusion: A reduction in TST could lead to increased care burden and more severe negative affect the following day, which may be moderated by employment status. 

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Evaluation of Family Caregivers’ Use of Their Adult Care Recipient’s Patient Portal From the 2019 Health Information National Trends Survey: Secondary Analysis

Background: Patient engagement is critical for realizing the value of telehealth modalities such as the patient portal. Family caregiver engagement may also be critical for facilitating the use of the patient portal among adult patients, including older adults. Objective: This study aims to analyze the 2019 Health Information National Trends Survey to characterize family caregivers’ use of their care recipient’s patient portal in terms of sociodemographic, health, and caregiving characteristics and caregivers’ use of their own portal. Methods: We conducted a secondary analysis of cross-sectional data from the National Cancer Institute’s Health Information National Trends Survey 5 Cycle 3. This survey was administered to 5438 US adults between January and May 2019. We analyzed data from 320 respondents who were identified as family caregivers. We created measures to reflect family caregivers’ use of their care recipient’s and their own portal, caregiver demographic and caregiving characteristics, and care recipient health characteristics. Results: Over half of the caregivers (179/320, 55.9%) reported using their own portal at least once, whereas only one-third (105/320, 32.8%) reported using their care recipient’s record in the previous 12 months. Caregivers using their own portal were significantly more likely to use their care recipient’s portal (odds ratio 11.18; P<.001). Conclusions: Policies should enable patients to designate family caregivers who can access their patient portal. Providers could screen caregivers for challenges in their caregiving responsibilities that may be addressed through the portal so they can better support their adult relatives. Interventions to support family caregivers, especially older caregivers, in using their own portal may facilitate their use of their care recipient’s portal.

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Dual-duty caregivers: formal and informal care roles and their implications among nursing workers

Background: A nursing worker who is also a caregiver of an elderly family member, plays a dual-duty role, which is challenging and requires knowledge, skills and professional experience. The interaction between family and work entails a spillover between the two, and affects employees and healthcare organizations. Objectives: The current exploration study examined differences between nursing employees who hold a dual role and those who do not, while identifying implications of the dual-duty role and the correlations between them at the individual level that might negatively affect the organization. Methods: A cross-sectional quantitative study was conducted, including 158 staff members from nursing homes in Israel: 41.8% were also informal caregivers for elderly family members, 62.5% were women, and 79.2% were Arabs. A self-administered questionnaire was used to measure workload, family-work conflict, absenteeism, tardiness, and intentions to leave the organization. Participants with a dual role tended to be older, had more children, had worked for longer period, and held part-time positions compared to those who do not. Results: Preliminary results showed no significant differences between the two groups. Pearson correlations revealed that workload and family-work conflict were positively associated with leaving intentions (dual-role caregivers: r=.30, p<.05, r=.45, p<.01; others: r=.61, p<.01, r=.34, p<.05). Among the dual-role group, workload was related to absenteeism (r=.27, p<.05), and family-work conflict was related to absenteeism and tardiness (r=.24, r=.29, p<.05). Among the other group, only family-work conflict was associated with tardiness (r=.33, p< .01). Conclusions: As negative consequences were indicated for workers with a dual-duty role, additional research in the healthcare sector should be conducted, leading to intervention programs for helping employees and organizations deal with the dual role and serving as the basis of policies and procedures. Key messages Nursing workers often suffer from workload and family-work conflict. Workload and family-work conflict among dual-duty caregivers might result in withdrawal behaviors (tardiness and absenteeism).

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Developing a Unifying Model of Resilience in Dementia Caregiving: A Scoping Review and Content Analysis

Background: Resilience, a capacity for addressing, recovering, and growing from challenging situations, can mitigate dementia care partners’ burden. Three main theoretical models predominate, treating resilience variably as an outcome, a trait, or a process. Objectives: In this scoping review, we examine how these three models inform definitions and measures of resilience in dementia care partners to understand whether there is a single coherent model and identify the gaps in conceptualizing and operationalizing resilience. Methods: We searched English-language peer-reviewed articles (January 1991–June 2019) that contained definitions and/or measures of resilience developed for or used with dementia care partners. Data were analyzed using content analysis. Results: We found that perspectives from the three existing theoretical models can be integrated into a unified framework for the study of resilience in dementia care partners. However, major gaps remain in operationalizing resilience for research due to a paucity of resilience outcomes and knowledge about resilience-related behaviors. 

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Determinants of the need for respite according to the characteristics of informal carers of elderly people at home: results from the 2015 French national survey

Background: The demographic and social changes associated with population aging and the increasing incidence of chronic diseases underscore the importance of the role of informal carers. The number of informal carers is increasing and negative consequences associated with providing care, such as burnout, are known. However the influence of socioeconomic and psychological factors on the need for respite have not been well characterized to date. Informal care represents an essential component of health care systems and long-term care. Objectives: The purpose of this study was to shed light on how the characteristics of informal carers affect the need for respite. Methods: We used data from a nationally representative survey, Capacités Aides et Resources des Seniors (CARE - ménage), collected in 2015 by the National Institute for Statistics and Economic Studies (INSEE) and the Directorate for Research, Studies, Assessment and Statistics (DREES). The determinants of the need for respite among the characteristics of informal caregivers were explored using a probit model. To handle missing data, sensitivity analyses were performed using multiple imputations. Results: Our study included N = 4033 dyads of informal carers and care recipients. The mean age was 61 for carers. The majority of carers were female, married, the child of the care recipient. Almost 27% reported a need for respite. A worse health status, feeling of loneliness, having a lack of time for oneself and needing to provide more than 30 h of care per month very significantly increased the need for respite irrespective of whether or not the carer lived with the care recipient (p < 0.01). Providing care to other persons was likely to induce a greater need for respite (p < 0.01). Cohabitation of the informal carer and the care recipient was likely to increase the need for respite (p < 0.05). Conversely, however, being closely acquainted with the care recipient showed a reduced need for respite in comparison with that of carers who are married to their care recipient (p < 0.05). Conclusions: These findings provide useful information for policymakers, physicians and other health professionals for reducing carers’ risk of exhaustion and burnout and for referring carers to the relevant service, e.g. psychological intervention, respite care support, training support and education support. 

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Dementia caregiving in the Middle East and North Africa: A scoping review

Background: Care for persons with dementia in the Middle East and North Africa (MENA) is undertaken predominantly by family members, domestic workers, and private nurses within the home. Domestic caregivers possess different understandings and varying degrees of knowledge of dementia that are influenced by complex socio-cultural and religious factors. With much of the burden falling on the shoulders of “invisible” caregivers, the role and needs of these individuals require deeper scrutiny. Objective: The purpose of this scoping review was to examine the empirical studies published on caring for persons with dementia in Arab countries of the MENA region. Methods: Using a systematic review technique, searches were conducted on PubMed, Embase, Web of Science, Scopus, and Google Scholar using database-specific terms associated with caregiving, dementia, aging, and the MENA region. To ensure local and regional research was captured, hand searches of regional journals, reference lists of included articles, and Arabic databases Al-Manhal and e-Marefa were also searched. No date restrictions were imposed. Results: Twenty studies met inclusion criteria and the following themes were identified: caregiving experiences and the burden of care; barriers to caregiving; and caregiver recommendations to improve care. Results demonstrate that studies about informal caregivers and dementia within Arab-Muslim populations are underrepresented in the research. Conclusions: This review highlights the paucity of literature on service users’ experiences and underscores the need for future research specific to dementia care within the Arab-Islamic sociocultural context. These trajectories are especially pertinent given the unprecedented aging demographics of the MENA populations. 

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Dementia Care Apps for People with Dementia and Informal Caregivers: A Systematic Review Protocol

Background: Dementia drastically impacts the quality of life (QOL) of both people living with dementia (PLwD) and their family caregivers. As dementia progresses and care needs escalate, the likelihood of institutionalization is increased, which is counter to the wishes of the majority of older adults and their family members. Dementia care apps can provide critical support and have the potential to improve the QOL of both PLwD and their family caregivers and reduce perceived caregivers' burden. However, there is a lack of understanding of the needs of both PLwD and their family caregivers related to dementia care apps. There is also a gap in understanding the privacy concerns in relation to the apps among older adults with dementia and their caregivers. Objectives: As such, the main aims of this systematic review are to understand the landscape of dementia mobile apps targeting PLwD and their caregivers with respect to the features of the apps, usability testing, and the privacy and security aspects of the app from the perspective of both app developers/researchers and the end users (PLwD and family caregivers who provide care of PLwD). Methods: Extensive databases, including ACM Digital Library, Cochrane Central Register of Controlled Trials, Compendex, Embase, Inspec, Ovid MEDLINE(R) Daily, Proquest Dissertations and These Global, PsycINFO, and Scopus, have been searched. All searches are from the inception of the databases. All peer-reviewed studies and articles written in the English language are included. Two reviewers will independently screen and select the studies with the involvement of a third reviewer for disagreements. Data will be abstracted using a custom data extraction form that is made based on the research questions. Critical Appraisal Skills Programme (CASP) checklists will be used to assess the study quality. As the first review of its kind, the findings from this review will provide valuable insights related to the needs of the dementia care apps for both PLwD and their family caregivers. Conclusions: The review will be relevant to health providers who are interested in using technologies to promote the independence of PLwD and reduce the stress experienced from caregivers of PLwD. The review will also serve as a guide to app developers and researchers to design usable and acceptable apps. In addition, the review will provide critical knowledge of the privacy and security features of the app to reveal the valid concerns from the end users and thus help with the uptake and adoption of the dementia care apps. 

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Cross-sectional study evaluating burden and depressive symptoms in family carers of persons with age-related macular degeneration in Australia

Objectives: We aimed to analyse the degree of carer burden and depressive symptoms in family carers of persons with age-related macular degeneration (AMD) and explore the factors independently associated with carer burden and depressive symptoms. Methods: Cross-sectional study using self-administered and interviewer-administered surveys, involving 96 family carer-care recipient pairs. Participants were identified from tertiary ophthalmology clinics in Sydney, Australia, as well as the Macular Disease Foundation of Australia database. Logistic regression, Pearson and Spearman correlation analyses were used to investigate associations of explanatory factors (family caregiving experience, carer fatigue, carer quality of life and care-recipient level of dependency) with study outcomes -carer burden and depressive symptoms. Results: Over one in two family carers reported experiencing mild or moderate-severe burden. More than one in five and more than one in three family carers experienced depressive symptoms and substantial fatigue, respectively. High level of care-recipient dependency was associated with greater odds of moderate-severe and mild carer burden, multivariable-adjusted OR 8.42 (95% CI 1.88 to 37.60) and OR 4.26 (95% CI 1.35 to 13.43), respectively. High levels of fatigue were associated with threefold greater odds of the carer experiencing depressive symptoms, multivariable-adjusted OR 3.47 (95% CI 1.00 to 12.05). Conclusions: A substantial degree of morbidity is observed in family carers during the caregiving experience for patients with AMD. Level of dependency on the family carer and fatigue were independently associated with family carer burden and depressive symptoms. Trial registration number: The trial registration number is ACTRN12616001461482. The results presented in this paper are Pre-results stage. 

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Digital personal assistants are smart ways for assistive technology to aid the health and wellbeing of patients and carers

Background: Digital health solutions such as assistive technologies create significant opportunities to optimise the effectiveness of both health and social care delivery. Assistive technologies include ‘low-tech’ items, such as memory aids and digital calendars or ‘high-tech’ items, like health tracking devices and wearables. Depending on the type of assistive devices, they can be used to improve quality of life, effect lifestyle improvements and increase levels of independence. Acceptance of technology among patients and carers depends on various factors such as perceived skills and competencies in using the device, expectations, trust and reliability. Objectives: This service evaluation explored the impact of a pilot service redesign focused on improving health and wellbeing by the use of a voice-activated device ‘smart speaker’, Alexa Echo Show 8. Methods: A service evaluation/market research was conducted for a pilot service redesign programme. Data were collected via a survey in person or telephone and from two focus groups of patients (n = 44) and informal carers (n = 7). The age of the study participants ranged from 50 to 90 years. Also, the participants belonged to two types of cohort: one specifically focused on diabetes and the other on a range of long-term health conditions such as multiple sclerosis, dementia, depression and others. Results: The device had a positive impact on the health and social well-being of the users; many direct and indirect benefits were identified. Both patients and carers had positive attitudes towards using the device. Self-reported benefits included: reminders for medications and appointments improved adherence and disease control; increased independence and productivity; and for those living alone, the device helped combat their loneliness and low mood. Conclusion: The findings from the study help to realise the potential of assistive technology for empowering supporting health/social care. Especially, the season of COVID-19 pandemic has highlighted the need for remote management of health, the use of assistive technology could have a pivotal role to play with the sustainability of health/social care provision by promoting shared care between the care provider and service user. Further evaluation can explore the key drivers and barriers for implementing assistive technologies, especially in people who are ageing and with long-term health conditions. 

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The COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia – a qualitative study

Background: Worldwide, restrictive measures have been taken to manage the spread of the COVID-19 pandemic. Social distancing and self-isolation have considerably affected the lives of people with dementia and their informal caregivers. Objectives: The purpose of the study was to explore the consequences of the COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia in Norway. Methods: The study had a qualitative descriptive design using individual telephone interviews for data collection. A total sample of 17 spouses of people with dementia were included, 14 women and three men ages 52 to 82 years. A qualitative content analysis following six steps inspired by Graneheim and Lundman was used to identify the categories presented. Results: The participants emphasized four main perspectives: 1) Radical changes in available services, 2) Restrictions changed everyday life, 3) Impacts on health and well-being, and 4) Actions that made life easier. The participants also described how positive activities and easily accessible services helped them in this situation. Conclusions: The governmental restrictions of the COVID-19 pandemic resulted in radical changes in available services with severe consequences for the lives and well-being of home-dwelling people with dementia and their spouses. Examples of coping strategies and possible psychosocial interventions compatible with virus precautions were identified. The potential of such interventions should be further explored to meet the needs of vulnerable groups in situations like a pandemic. 

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Concerns and potential improvements in end-of-life care from the perspectives of older patients and informal caregivers: a scoping review

Background: Overtreatment in advanced age i.e. aggressive interventions that do not improve survival and are potentially harmful, can impair quality of care near the end of life (EOL). As healthcare provider perspectives on care quality may differ from that of service users, the aim of this study was to explore the views of older patients near EOL or their caregivers about the quality of health care at the EOL based on their lived experience, and to identify healthcare service improvements. Methods: Medline and backward citation searches were conducted for qualitative or quantitative studies reported on the views of patients and/or informal caregivers about EOL care quality. Thematic analysis was used to summarise qualitative data (primary analysis); narrative and tabulations were used to summarise quantitative data (secondary analysis). Results: Thirty articles met the inclusion criteria. Five main qualitative themes regarding quality care emerged: (1) Effective communication between clinicians and patients/caregivers; (2) Healthcare that values patient preferences and shared decision making; (3) Models of care that support quality of life and death with dignity; (4) Healthcare services that meet patient expectations; and (5) Support for informal caregivers in dealing with EOL challenges. The quantitative articles supported various aspects of the thematic framework. Conclusion: The findings of this study show that many of the issues highlighted by patients or bereaved relatives have persisted over the past two decades. There is an urgent need for comprehensive evaluation of care across the healthcare system and targeted redesign of existing EOL care pathways to ensure that care aligns with what patients and informal caregivers consider high-quality patient-centred care at the EOL. 

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Communication-related concerns of family caregivers of older adults living with dementia: A cross-sectional descriptive study

Objectives: The purpose of this study was to investigate the communication-related concerns of family caregivers of older adults living with dementia in Thailand. Methods: A cross-sectional study in which 115 caregivers from five outpatient clinics located in the central and southern regions of Thailand participated in a survey from May to October 2019. The survey questions spanned three topics: (1) communication problems and perceived communication difficulties; (2) communication strategies used and older adults’ positive responses and; (3) communication training support. Data collected were analyzed by using descriptive statistics with focus on frequency ranking and correlation. Results: In general, most of the caregivers were females with daughter-mother or daughter-father relationships, and had taken on the role of main caregivers of the older adults from one to five years. The older adults’ ages ranged from 60– 94 years with a mean age of 76.3 years (SD = 7.8). The majority was female. TMSE scores ranged from 14–23 with the majority scoring 19 points (n = 78, 67.8%). Conclusions: The study results suggested that communication-related concerns among family caregivers of older adults living with dementia play a major role in their emotional burdens. Recognizing communication-related concerns should be utilized for designing an appropriate communication training program and implementing interventions for assisting family caregivers. A communication program assisting family caregivers to build a more open and positive relationships with older adults with dementia is recommended. 

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Combining a variable‐centered and a person-centered analytical approach to caregiving burden – a holistic approach

Background: Informal caregivers of persons with dementia often experience elevated levels of caregiving burden. However, existing studies tend to use a variable-centered approach to explore it. This study aims to understand the caregiving burden of informal caregivers of persons with dementia in Singapore through a combination of variable-centered and person-centered analytical approaches, and explore the correlates of identified factors and latent classes of caregiving burden. Methods: Zarit Burden Interview was used to gauge the caregiving burden of 282 primary informal caregivers of persons with dementia recruited through convenience sampling in Singapore. Factor analysis and latent class analysis were conducted to identify the latent factors and the latent classes of Zarit Burden Interview, followed by multiple linear regression and multinomial logistic regression to explore their significant correlates. Results: The analyses suggested a 17-item 3-factor structure for Zarit burden interview and three mutually exclusive caregiving burden classes. Regression analyses found that caregiving related variables especially care recipients’ memory and behaviour problems were correlated with both the factors and latent classes of caregiving burden. Conclusions: The combination of these two approaches suggests that caregivers experiencing higher burden on one domain are likely to experience higher burden on the other two domains. This further supports the point that more attention should be given to caregivers who experience an overall high burden. Future research could explore the generalizability of our findings among caregivers elsewhere and explore the type of support needed by caregivers, especially those experiencing high burden. 

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Communication in home care: Understanding the lived experiences of formal caregivers communicating with persons living with dementia

Background: Little is known about formal caregivers’ lived experiences communicating with persons living with dementia (PLWD) who live in their own homes. Most information comes from research conducted in long‐term care settings or home care settings involving family care partners. Yet, there are expected needs and rising demands for formal caregivers to provide support within clients’ homes. Objectives: Accordingly, this study aimed to understand the lived experiences of personal support workers (PSWs) regarding their communication with PLWD who live in their own homes. Methods: The study was grounded in a hermeneutic phenomenological research approach. Data were collected as part of the Be EPIC project, an evidence‐informed, person‐centred communication intervention for PSWs caring for PLWD. One, in‐depth semi‐structured interview was conducted with each of the PSWs (N = 15). Thematic analysis was completed on the interviews. Results: Three major themes emerged: (1) Challenged by dementia‐related impairments; (2) Valuing communication in care; and (3) Home is a personal space. Findings revealed that PSWs experience difficulties communicating with PLWD because of dementia‐related impairments, despite PSWs recognizing the importance of communication when they provide optimal care in the homes of PLWD. This suggests that PSWs view communication as a crucial component of quality care but do not possess the skills necessary to ensure effective interactions. Findings also demonstrated the importance, uniqueness and impact of the personal home space on PSWs’ experiences with communication. Conclusion: Overall, findings indicate that PSWs acknowledge the importance of communication as an integral element of providing optimal care, but dementia‐related impairments and the intimate, personal home‐based care context can hinder successful communication between PSWs and PLWD. The implications of the findings are that additional and targeted education and training are required for PSWs, especially on how dementia‐related impairments impact communication within the context of home care based services for PLWD.

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Money transfers within caring dyads: some open research questions

By its definition, care is not (financially) reimbursed. However, care recipients often provide material and/or financial support to their carers, which may be related to a range of psychological and social outcomes, such as the financial fragility of care recipients, changes in the quality of relationships and care, or psychological burden. In this article, I provide a brief overview of the extant knowledge on the topic and discuss some of the research questions that should be addressed in the future, both through analyses of longitudinal data and through focused research projects, linking them to the aforementioned outcomes and overall well-being of the carers.

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The use of technology by people with dementia and informal carers during COVID-19: a cross-country comparison

Background: Social distancing rules and the closure of services associated with the COVID-19 pandemic have strongly impacted the physical and mental health of people with dementia. Digital technologies can represent an effective means to compensate for the distress associated with social distancing rules and the decreased use of in-person services. More specifically, technologies such as smartphones, tablets, and smart home systems can minimize the negative effects of social distancing and isolation, and the pressure on health and care systems. Indeed, they can provide a continuity of care and social connectedness, while decreasing exposure to risk. However, barriers such as digital literacy and lower income households can impede the access and use of digital technologies. Objectives: The aim of this international study was to compare the use of technology by people with dementia from different care settings, and their informal carers across four countries (Italy, UK, Australia, and Poland). Methods: People with dementia and informal carers were invited to participate in semi-structured interviews. Verbatim transcripts were analysed by researchers in each country using inductive thematic analysis. Results: A total of 141 people with dementia and carers (47 in Italy; 50 in the UK; 18 in Australia; 26 in Poland) were interviewed. The analysis identified three overarching themes: 1) different uses of technology (three subthemes); 2) benefits of technology (three subthemes); 3) limitations of technology (three subthemes). Results show that calls, video calls, and group-chats were effectively used across countries to guarantee the continuity of relationships with professionals, families, and small groups of peers. Telemedicine was used with varying levels of satisfaction. Furthermore, the benefits experienced by carers exceeded those for people with dementia. Similar barriers were reported across countries, and were strictly associated with dementia deficits, low level digital literacy, and the need for carer’s supervision. Conclusions: These international findings highlight the importance to maximise the benefits related to the use of technology according to people with dementia’s impairment and care context. Moreover, it should be complementary to in-person care which should be provided, at least to some extent, even during pandemic times.

 

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Caregiving adult children’s perceptions of challenges relating to the end of life of their centenarian parents

Background: The number of centenarians in Europe is increasing; many face health impairments. Adult children often play a key role in their care, but there is a lack of research into what it means for these caregiving relatives to be confronted for many years with their parents’ end of life (EOL), dying and death as well as their own advancing age. Objectives: This study aims to analyse the challenges of caregiving adult children regarding their parents’ end of life and the related burdens and barriers they report. Methods: Semi‐structured interviews were conducted with 13 caregivers following a theory‐based and tested guideline. The computer‐aided coding and evaluation followed the structured content analysis approach. Results: The analysis showed three main themes: 'Confronting EOL', 'Communicating about death and dying' and 'Assisting in the terminal phase'. The respondents commented on burdensome demands and concerns about the future. Further, a strong underlying presence of intra‐ and interpersonal conflicts relating to EOL became apparent. Discussion: The results indicate several potential burdens for centenarians’ caregiving offspring. They are confronted with a double challenge resulting from the combination of their own advanced age and experiencing the burdens of their parents’ very old age. Further, some participants struggled with their own unclear perspective on the future because of the relative but unclear proximity of the parent’s death. Multiple conflicts and overlapping conflict dimensions emphasise the potential of the EOL topic to influence the well‐being of family caregivers and care recipients. Limitations: The convenience sample used for the study may cause limitations, for example, the fact that persons with a formally lower educational status are not represented. Conclusion: The findings suggest that interventions designed for family‐related care situations should include topics like 'Finiteness and grief', 'Communicating about dying and death' and 'Decisions and dispositions at EOL'.

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Caregiving Across Cultures: Priority Areas for Research, Policy, and Practice to Support Family Caregivers of Older Asian Immigrants

Background: About 4.6 million older adults (aged 60 years and older) in the United States are foreign born, and Asian Americans are projected to become the largest immigrant group in the United States by 2055. Older Asian immigrants have to navigate new sociocultural contexts, including relationships with health care providers, dietary recommendations and adjustments, and care-seeking norms. They may also experience structural challenges, such as discrimination in the health care system because of race, ancestry, and language. These adults often require assistance from unpaid family caregivers (e.g., adult children)-with whom they are also likely to reside-to navigate these sociocultural complexities and barriers in the health care system. Yet, our understanding of the experiences and challenges of family caregivers of older Asian immigrants remains limited despite their unique circumstances as children of immigrants who are simultaneously balancing and navigating multiple cultural identities of their own while often being viewed as perpetual foreigners or outsiders to US culture. Immigration history and experiences likely also influence the use of formal services. Minority family caregivers are less likely than White caregivers to use formal support services (e.g., mental health treatment), suggesting that they may face additional burdens and barriers in the process of supporting their older relative in the health care system. Identifying ways to better support family caregivers as they care for their immigrant older relatives is critical for promoting inclusion in the health care system. This requires concerted research on Asian American caregivers and their experiences and challenges in their role supporting older relatives with household, daily functioning, and health care activities as well as navigating sociocultural aspects of care. It also requires recognition and consideration of the diversity of experiences and challenges faced by Asian American families, including heterogenous Asian ethnic subgroups with distinct cultures, languages, needs, and preferences.

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Caregivers’ experiences of contributing to patients’ self‐care in Chronic Obstructive Pulmonary Disease: A thematic synthesis of qualitative studies

Objectives: To identify, analyze and synthesize qualitative studies on caregivers’ experiences of contributions to the self‐care of patients with Chronic Obstructive Pulmonary Disease (COPD). Background: COPD patients perform daily self‐care behaviours to manage the disease. With aging and disease progression, patients need to rely on the contributions of informal caregivers, usually family members, for disease management. Caregivers’ normal or habitual contributions to patients’ self‐care have not yet been completely investigated. Methods: Thematic synthesis of qualitative studies.Data sourcesCINAHL, EMBASE, PubMed, PsycINFO, Web of Science, Scopus, Emcare and OpenGrey databases were searched from inception to September 2020. The search was restricted to English‐language papers.Review methodsStudies were critically appraised using the Critical Appraisal Skills Programme checklist. The initial line‐by‐line codes were aggregated into descriptive themes from which analytical themes were derived. Results: Fifteen papers from nine countries, published 2009–2020, were included. Six analytical themes encompassing 22 descriptive themes were identified and grouped in two overarching themes describing caregivers’ experiences of contributions to patients’ self‐care during the stable and exacerbation phases of COPD. In the stable phases, caregivers contribute through maintaining disease stability, promoting healthy behaviours, fostering normal life and helping perform daily activities. During exacerbations, caregivers contribute through assessing, monitoring and managing symptoms in collaboration with patients or autonomously. They contribute by performing actions, motivating patients, organizing care, sensing variations in symptoms, acquiring knowledge and educating patients, making decisions, communicating and collaborating with healthcare providers and patients and advocating for patients. Conclusion: This thematic synthesis enlarges knowledge of caregivers’ contributions to patients’ self‐care in COPD, detailing the ways by which caregivers provide care to patients. Impact: Contributing daily to the self‐care of a family member with COPD is a complex experience. Nurses need to acknowledge the importance of caregivers’ contributions to patient disease management and develop effective educational interventions to support them.

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Caregiver identity in care partners of persons living with mild cognitive impairment

Background: Research on caregiver identity in the context of memory impairment has focused primarily on more advanced stages of the cognitive impairment trajectory (e.g., dementia caregivers), failing to capture the complex dynamics of early caregiver identity development (e.g., MCI; mild cognitive impairment caregivers). Objectives: The aim of this study was to develop a nuanced understanding of how caregiver identity develops in family and friends of persons living with MCI. Methods: Using constructivist grounded theory (ConGT), this study explored caregiver identity development from 18 in-depth interviews with spouses (n = 13), children (n = 3), and friends (n = 2) of persons recently diagnosed with MCI. Findings: The overarching themes influencing MCI caregiver identity development included MCI changes, care-related experiences, “caregiver” interpretation, and approach/avoidance coping. These themes influenced how participants primarily identified, represented as I am a caregiver, I am not a caregiver, or liminality (i.e., between their previous identity and a caregiver identity). Irrespective of their current self-identification, all conveyed thinking about their “future self,” as providing more intensive care. MCI caregiver identity development in family and friends is a fluid and evolving process. Nearly all participants had taken on care tasks, yet the majority of these individuals did not clearly identify as caregivers. Conclusions: Irrespective of how participants identified, they were engaging in care, and would likely benefit from support with navigating these changes and their new, ambiguous, and evolving roles. 

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Preliminary investigation of family caregiver burden and oral care provided to homebound older patients

Objectives: Family caregivers play an important role in maintaining the oral health of homebound older adults. Thus, this preliminary study investigated family caregivers' burdens and the oral care they provide to homebound older patients. Methods: A cross‐sectional survey was conducted. A questionnaire was distributed to 230 family caregivers of homebound older patients. We used the Japanese version of the Zarit Burden Interview (J‐ZBI) to measure caregiver burden. The cut‐off score for the J‐ZBI was 21 points. Caregivers with a care burden score below 21 points formed the mild group, while those scoring 21 points or more were included in the moderate/severe group. The differences between the groups were examined. The implementation status of oral care was assessed by the amount of time caregivers spent providing oral care and related concerns. The degree of independence for homebound older patients was measured using the Barthel Index. Multiple logistic regression analyses were conducted to determine the factors associated with the severity of caregiver burden. Results: A total of 114 caregivers returned the questionnaires by mail (response rate: 49.6%). The moderate/severe care burden group represented 80.7% of the caregivers. A multiple logistic regression analysis revealed that the level of patient independence and time spent performing oral care were significantly associated with the severity of caregiver burden. Conclusions: The results show that family caregivers experiencing high caregiver burden spent less time providing oral care than caregivers who reported less caregiver burden. Thus, support for oral health management provided by oral health professionals is considered necessary for family with a high caregiver burden of homebound older patients.

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Informal caregivers of older Muslims diagnosed with cancer: A portrait of depression, social support, and faith

Objective: Islamic population constitute more than 20% of the world population and is growing rapidly. Nevertheless, data concerning informal caregiving to older Muslim patients diagnosed with cancer are scarce. Improving the well-being of caregivers is a vital step to optimal care for the patients themselves throughout the Muslim community and the world. This study focuses on a sample of Palestinian caregivers of older Muslim patients diagnosed with cancer living in East Jerusalem, the West Bank, and Gaza. The study aims to describe the socio-demographic characteristics of the caregivers and to understand their social support, and identify predictors of caregivers’ depression. Methods: A cross-sectional study of a convenience sample of 99 dyads of Palestinian patients (age ≥65) and their informal caregivers. Depression and social support were measured using the five items of the Geriatric Depression Scale and the Cancer Perceived Agents of Social Support questionnaire. Results: Caregivers were most frequently adult children (52%) or spouses (32%), with male patients cared for by spouses (47.5%) or sons (32%), and female patients by daughters (50%). Clinical levels of depression were reported by 76% of the caregivers and 85% of patients. The significant predictors of caregiver depression were female gender, lower education, lower perceived social support from spouse and family, and higher perceived support from faith. Significance of results: Healthcare providers serving the study population should determine the position and role of the caregiver within the social and family structure surrounding the patients’ families. This understanding may facilitate overcoming barriers to effective and meaningful social support.

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Older adults with chronic illness – Caregiver burden in the Asian context: A systematic review

Background: Upsurge in life expectancy, filial responsibility of caring, and healthcare advances have increased the older adult population in Asia. The last decade has witnessed nuclear families' proliferation in Asia, leaving family caregivers with more accountability and responsibility. This review explores the pattern of caregiver burden among caregivers of older adults with chronic illness in Asia. Methods: PRISMA guidelines serves as the framework for this systematic review. Studies from selected databases assessed caregivers' physical state, psychological dysfunction, and or burden as an outcome measure. The Newcastle - Ottawa Quality Assessment Scale appraised the quality of the selected studies. Results: The review included 12 research articles. Caregivers consistently report mild to a moderate burden. Care recipient with functional dependency, comorbidities, memory, and sleep impairments, escalate caregiver burden. Caregiver variables intensifying burden were advancing age, male gender, spouse as a care recipient, longer care provision duration, and no assistance. Conclusion: Optimal levels of emotional well-being, significant family/social support, and self-preparedness among caregivers are grounds for their empowerment. Practical Implications: A paradigm shift from 'caregiver burden' to 'caregiver resilience' is advocated. Routine screening, preventive measures (skill-building and psychosocial empowerment), and restorative services (respite care and problem-based home visiting) for caregivers are forecasted. 

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Total cost of care increases significantly from early to mild Alzheimer's disease: 5-year ALSOVA follow-up

Background: We studied the costs of formal and informal care in relation to Alzheimer's disease (AD) progression. Methods: 231 persons with AD with a family caregiver were followed up for 5 years. The Clinical Dementia Rating Scale-Sum of Boxes (CDR-SB) was used to measure AD progression. Health and social care unit costs were used for formal care costs. An opportunity cost method for lost leisure time was applied to analyse the cost of informal care. Results: Total cost of care in early stage AD (CDR-SB <= 4) was 16,448(sic) (95% CI 13,722-19,716) annually. In mild (CDR-SB 4.5-9), moderate (CDR-SB 9.5-15.5) and severe (CDR-SB >= 16) AD, the total costs were 2.3, 3.4 and 4.4 times higher, respectively. A one-unit increase in CDR-SB increased the total, formal and informal costs by 15, 11 and 18%, respectively. Conclusions: Compared to early AD, the costs of total, formal and informal care are remarkably higher already in mild AD. This finding emphasises early diagnosis, interventions and family support for persons with AD and their caregivers.

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Care for caregivers- a mission for primary care

Background: The number of elderly people living in the community who are limited in daily activities is increasing worldwide. This generates prolonged care, which usually falls on one family member, the family caregiver. Caregivers are prone to develop psychosocial and physical symptoms. As a result, the World Health Organization (WHO) issued a clear directive to assess and support these caregivers. Objectives: The main goals of this study were to assess primary care physicians’ (PCP) awareness to caregivers’ health risks and the extent that they recommended preventive measures to maintain the health of the caregivers. As no suitable instrument existed, a secondary goal was to develop a scale to measure physicians’ awareness to caregivers’ health and preventive treatment and test it’s psychometric properties. Methods: Data were collected from a convenience sample of 201 PCP interviewed with structured questionnaires. Results: The participants’ mean age was 48.5 ± 11.2 years and 53.5% were female. Only 48.5% were Israel medical graduates and 72% were board-certified family physicians. Nearly 34% had been primary caregivers of family members. Most physicians (83.6%) were aware of the primary caregiver’s high-risk for morbidity and mortality, and recommended preventive care. On a multivariate regression, PCP's higher level of risk awareness, their country of medical school and board certification were significant for explaining recommendations for preventive care. However, being a primary caregiver for a sick family member neither contributed significantly to the physicians’ awareness to caregiving risks nor to their preventive care. Conclusion: Although a high percentage of physicians were aware and concerned about caregivers’ health, their preventive care activities were relatively passive. PCPs should take a more active and preventive role for maintaining caregivers’ health. 

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Are informal family caregivers stigmatized differently based on their gender or employment status?: a German study on public stigma towards informal long-term caregivers of older individuals

Background: Stigma and informal caregiving are determinants for health and wellbeing, but few studies have examined stigma towards informal caregiving. Public stigma may be expressed differently towards caregivers depending on their gender and employment status due to societal norms. Therefore, this study analyzes if there is a difference in public stigma shown by the general population toward informal caregivers of care recipients aged 65 years or older based on the observed caregiver’s gender or working status. Methods: A cross-sectional study was conducted in Germany. Data from 1038 adult participants from the general population in Germany were assessed with an Online-Survey. They were recruited with a quota-system based on the German micro census. Participants were randomly assigned to one of 16 vignettes describing a caregiving situation, which varied in the caregiver’s gender and working status, and care recipient’s gender and type of impairment. After reading the vignette, they were asked to provide sociodemographic information and complete three questionnaires on public stigma assessing their emotional (Emotional Reactions), behavioral (Social Distance) and cognitive reaction (Statements on informal caregivers) to the caregiver described in the vignette. Regression analyses, adjusted for sociodemographic data of the participants, were conducted. Results: Findings indicated an association between reading about male caregivers and increased social distance, compared with reading about female caregivers. Reading about working caregivers was associated with decreased social distance and increased appreciative statements, compared to reading about non-working caregivers. Analyses after stratifying by gender of the caregiver in the vignette indicated an association between reading about female working caregivers and increased appreciative statements, compared to reading about female non-working caregivers. When stratifying by working status, an association was found between reading about male working caregivers and increased social distance, when compared to reading about female working caregivers. Conclusions: This study’s findings indicate that gender and working status of the perceived informal caregivers are of relevance to the public stigma directed towards these caregivers. Male and non-working informal caregivers were shown more public stigma than female and working informal caregivers. Thus, interventions to reduce public stigma, in particular towards male and non-working caregivers, are recommended.

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Association Between Caregiver Depression and Elder Mistreatment-Examining the Moderating Effect of Care Recipient Neuropsychiatric Symptoms and Caregiver-Perceived Burden

Objectives: To examine the association between caregiver (CG) depression and increase in elder mistreatment and to investigate whether change in care recipient (CR) neuropsychiatric symptoms (NPS) and change in CG-perceived burden influence this association. Methods: Using 2-year longitudinal data, we analyzed a consecutive sample of 800 Chinese primary family CGs and their CRs with mild cognitive impairment or mild-to-moderate dementia recruited from the geriatric and neurological departments of 3 Grade-A hospitals in the People's Republic of China. Participatory dyads were assessed between September 2015 and February 2016 and followed for 2 years. Results: CG depression at baseline was associated with a sharper increase in psychological abuse and neglect. For CRs with increased NPS, having a depressed CG predicted a higher level of psychological abuse than for those CRs without NPS. For CGs with decreased burden, the level of depression was associated with a slower increase in neglect than for CGs who remained low burden. Discussion: This study showed the differential impact of CG depression on the increase in elder mistreatment depending on the change in CR NPS and CG-perceived burden. Conclusions: The present findings provide valuable insights into the design of a systematic and integrative intervention protocol for elder mistreatment that simultaneously focuses on treating CG depression and perceived burden and CR NPS.

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Beyond nostalgia: Older people's perspectives on informal care in rural Flanders

Background: Flanders (Belgium) is aging at high speed. In 2060, almost one in three (32 percent) will be older than 60. The number of people aged 80 and over will increase from more than 400,000 today to nearly 800,000 in 2060. This demographic change can be witnessed throughout the entire region, yet older people are overrepresented in rural areas. A large majority of older people is ‘aging in place’. This often occurs in places that witness a severe decline in basic facilities and that suffer from a loss of its young(er) population. Nevertheless, policies in Flanders strongly support aging in place, while emphasizing the role of informal caregivers. Objective: This paper explores older people's perceptions of and experiences with informal care in rural Flanders. Methods: Based on qualitative in-depth interviews, we focus on the role of family members and neighbors in providing informal care for older people living at home in two different rural areas in Flanders (‘Westhoek’ and ‘Kempen’). Findings: The analysis shows how, in both regions, receiving care from children and neighbors is simply not always perceived as a valid and realistic option by our respondents, and this for different reasons. It concludes that the current focus of elderly policy in Flanders on aging in place and the strong emphasis on the role of informal caregivers work only for those older people whose informal caregivers (in practice mostly children) live nearby. This depends strongly, of course, on spatial and economic factors. Also, neighbors are not the cohesive group they are presumed to be. Conclusions: We thus have to move beyond the nostalgic idea that neighbors and close family members can or will actively engage in informal care. 

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A New Stage of the Caregiving Career: Informal Caregiving after Long-term Institutionalization

Background and Objectives: The "unexpected career"of caregiving has previously been conceptualized in stages: community care through institutional placement/residence, ending with death of the care recipient. Transition programs such as Money Follows the Person (MFP) created a new stage of the caregiving career, caring for someone post-long-term institutionalization, about which little is known. Using Pearlin's Caregiver Stress Process Model, this study explores effects on caregivers from the return of their loved ones to the community after a long-term institutional stay. Research Design and Methods: Cross-sectional surveys of 656 caregivers of persons transitioned through Connecticut's MFP program 2014-2018, completed 6 months posttransition. Results: Regardless of the age/disability of the care recipient, and despite experiencing high caregiving intensity, caregivers experienced less burden, anxiety, and depression, and higher benefits of caregiving than demonstrated in literature for the general caregiving population. Most felt less stressed than before and during the participant's institutional stay. Factors associated with worse outcomes included worry about safety, strained finances, missing work, and desiring additional services. Black and Hispanic caregivers experienced lower burden and anxiety and higher benefits of caregiving than White caregivers. Discussion and Implications: By providing community supports to participants, transition programs can have broad ancillary benefits for caregivers and improve outcomes in the Pearlin model, lessening potentially deleterious effects of an unexpected return to intensive caregiving duties after institutional placement. Positive results for Black and Hispanic caregivers may reflect cultural expectations in caring for family that buffer the adverse effects of caregiving. 

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Integrated dementia care: A qualitative evidence synthesis of the experiences of people living with dementia, informal carers and healthcare professionals

Background: In order to provide improved care provision, integrated care services are being developed. However, little is known about how people living with dementia, their families and healthcare professionals experience integrated care. Therefore, the purpose of this review of the qualitative literature was to examine the experiences and perceptions of integrated dementia care. Methods: This qualitative review synthesised findings from included studies identified from a comprehensive literature search. Searches included: five electronic databases, journal handsearching, and reference list searching of relevant literature reviews and the final included studies. Findings: Three overarching themes were identified: 1) Ways of working which facilitate the delivery of integrated dementia care; 2) Informal carers as equal partners in care provision and decision making; and 3) Challenges leading to fragmented and disjointed integrated dementia care. For integrated care to be successful, communication and collaboration between healthcare professionals, and the involvement of informal carers is needed. Multidisciplinary teams and employing case managers to coordinate care provision can improve communication and collaboration. However, distrust between healthcare professionals and a lack of a central database to access and share information often hinders the development of integrated dementia care service provision. Conclusion: Integrated dementia care can be successful and well received by people living with dementia and their families when certain conditions are met. However, given the negative consequences fragmented and disjointed care can have on people living with dementia and their families, action is needed to further support the development of integrated dementia care services. 

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A cross-country comparison of family carers experiences with residential aged care facilities during the COVID-19 pandemic

Background: The number of research projects into residential aged care (RAC) during the COVID-19 pandemic is increasing, however there are limited data on the cross-country comparison of experiences residents living with dementia and their families. Our study aimed to 1) give an overview of the RAC restrictions and changes (visiting policy, governmental & health authorities’ advice, service delivery) implemented during the pandemic in Australia, Italy and the UK and 2) and their impact on people with dementia in RAC facilities and their families. Methods: A total of 56 informal family carers of people with dementia residing in RAC took part in semi- structured interviews over the telephone or via Skype in Australia (n=6), Italy (n=25) and the UK (n=26) between July 2020 and March 2021. The interviews were recorded and translated verbatim. Transcripts were analysed by researchers in each country using thematic analysis, then combined across sites. Results: Inductive thematic analysis identified four overarching themes: 1) Adaptations implemented in RAC facilities due to the COVID-19 pandemic in Australia, Italy and the UK; 2) means of communication between RAC facility personnel, people with dementia living in RAC and family members; 3) impact of the implemented restrictions and changes in care provision due to the COVID-19 pandemic on people with dementia in RAC facilities and 4) impact of the implemented restrictions and changes in care provision due to the COVID-19 pandemic on families of people with dementia in RAC facilities. While differences between countries and facilities were identified, the restrictions and changes within the residential care system impacted families’ well-being, increased their worries about care quality and safety of people with dementia. The consequences of a lack or modified services for people with dementia included noticeable physical and mental health changes. Although the majority of the facilities implemented some form of video-communication between families and residents, those solutions were unable to replace face-to-face contact. Conclusions: These findings demonstrate the need for implementing safe solutions which might facilitate more frequent in-person contact between families and residents with dementia preventing consequences in mental and physical health in both groups.

 

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A complex intervention to promote prevention of delirium in older adults by targeting caregiver’s participation during and after hospital discharge – study protocol of the TRAnsport and DElirium in older people (TRADE) project

Background: Among potentially modifiable risk factors for delirium, transfers between wards, hospitals and other facilities have been mentioned with low evidence. TRADE (TRAnsport and DElirium in older people) was set up to investigate i) the impact of transfer and/or discharge on the onset of delirium in older adults and ii) feasibility and acceptance of a developed complex intervention targeting caregiver’s participation during and after hospital discharge or transfer on cognition and the onset of delirium in older adults. Methods: The study is designed according to the guidelines of the UK Medical Research Council (MRC) for development and evaluation of complex interventions and comprises two steps: development and feasibility/piloting. The development phase includes i) a multicenter observational prospective cohort study to assess delirium incidence and cognitive decline associated with transfer and discharge, ii) a systematic review of the literature, iii) stakeholder focus group interviews and iv) an expert workshop followed by a Delphi survey. Based on this information, a complex intervention to better and systematically involve family caregivers in discharge and transport was developed. The intervention will be tested in a pilot study using a stepped wedge design with a detailed process and health economic evaluation. The study is conducted at four acute care hospitals in southwest Germany. Primary endpoints are the delirium incidence and cognitive function. Secondary endpoints include prevalence of caregiver companionship, functional decline, cost and cost effectiveness, quality of discharge management and quality of admission management in admitting hospitals or nursing homes. Data will be collected prior to discharge as well as after 3, 7 and 90 days. Discussion: TRADE will help to evaluate transfer and discharge as a possible risk factor for delirium. In addition, TRADE evaluates the impact and modifiability of caregiver’s participation during patient’s transfer or discharge on delirium incidence and cognitive decline providing the foundation for a confirmatory implementation study. Trial registration: DRKS (Deutsches Register für klinische Studien) DRKS00017828. 

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The determinants of caregiver use and its costs for elderly inpatients in Korea: a study applying Andersen’s behavioral model of health care utilization and replacement cost method

Objectives: The average annual healthcare expenditure among elderly patients in Korea is increasing rapidly in indirect healthcare sectors, requiring an understanding of factors related to the use of both formal and informal caregivers. Objectives: This study analyzed the characteristics of caregiver use and caregiving costs among elderly patients hospitalized due to acute illness or exacerbation of chronic diseases. Methods: A total of 819 study participants were selected from the 2017 Korea Health Panel Study Data. Replacement costing methods were applied to estimate the hours of informal caregiver assistance received by elderly inpatients. Elderly inpatients’ predisposing, enabling, and need factors were studied to identify the relationship between caregiver uses, based on Andersen’s behavior model. A two-part model was applied to analyze the factors related to care receipt and to estimate the incremental costs of care. Results: Elderly inpatients who used tertiary hospitals (OR: 2.77, p-value < 0.00) and received financial support (OR: 2.68, p-value < 0.00) were more likely to receive support from a caregiver. However, elderly inpatients living alone were lesser to do so (OR: 0.49, p-value < 0.00). Elderly inpatients with Medicaid insurance (β:0.54, p-value = 0.02) or financial aid (β: 0.64, p-value < 0.00) had a statistically positive association with spending more on caregiving costs. Additionally, financial support receivers had incremental costs of $627 in caregiving costs than nonreceivers. Conclusions: This study presented significant socioenvironmental characteristics of formal and informal caregiver use and the related expenditures. Healthcare management plans that encompass multiple social levels should be implemented to ease the caregiver burden. 

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The COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia – a qualitative study

Background: Worldwide, restrictive measures have been taken to manage the spread of the COVID-19 pandemic. Social distancing and self-isolation have considerably affected the lives of people with dementia and their informal caregivers. Objectives: The purpose of the study was to explore the consequences of the COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia in Norway. Methods: The study had a qualitative descriptive design using individual telephone interviews for data collection. A total sample of 17 spouses of people with dementia were included, 14 women and three men ages 52 to 82 years. A qualitative content analysis following six steps inspired by Graneheim and Lundman was used to identify the categories presented. Results: The participants emphasized four main perspectives: 1) Radical changes in available services, 2) Restrictions changed everyday life, 3) Impacts on health and well-being, and 4) Actions that made life easier. The participants also described how positive activities and easily accessible services helped them in this situation. Conclusions: The governmental restrictions of the COVID-19 pandemic resulted in radical changes in available services with severe consequences for the lives and well-being of home-dwelling people with dementia and their spouses. Examples of coping strategies and possible psychosocial interventions compatible with virus precautions were identified. The potential of such interventions should be further explored to meet the needs of vulnerable groups in situations like a pandemic. 

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Sustainable care: theorising the wellbeing of caregivers to older persons

Background: The term ‘care crisis’ is invoked to denote chronic system failures and bad outcomes for the people involved. Methods: We present a comprehensive wellbeing framework and illustrate its practicality with evidence of negative outcomes for those who provide care. Findings: We find evidence of substantial material and relational wellbeing failures for family carers and for care workers, while there has been little interest in carers’ views of their ability to live the life that they most value. Conclusions: Understanding and improving wellbeing outcomes for carers is an essential component of sustainable care, which requires the wellbeing of the different actors in care arrangements.

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Stimulating the involvement of family members in the medication management activities of older adults through ambient displays: Qualitative study

Background: Little attention has been paid to how medication management technologies, designed for older adults, modify the participation of family caregivers. Methods: We developed a tablet-based ambient display that provides external cues to remind and motivate older adults to take their medications. This study aimed to understand the effect of ambient displays on the involvement of family members in the elderly's medication management. We conducted a 10-week study consisting of interviews administered weekly to nine elderly-caregivers. Findings: We identify that new involvement patterns of the family caregivers were provoked through external cues, which made them aware of older adults' medication adherence and encouraged younger relatives to help older adults. 

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Scoping review: Health needs of the family caregivers of elderly stroke survivors

Background: This scoping review mapped out the relevant literature, identified gaps and made suggestions on the subject of the health needs of family caregivers (FC) of elderly stroke survivors (ESS). Methods: The authors utilised the PRISMA‐ScR checklist to guide the scoping review. The databases PubMed, Elsevier and BioMed Central were searched for academic articles published in the English Language between the years 2010 and 2020 that met a pre‐set criteria of content on the health needs of FC of ESS. The process of selection of sources of evidence based on screening and eligibility of evidence reduced the initially identified 13,303 sources of evidence in the searched databases to five sources of evidence. The content of these five sources of evidence was mapped out on a charting table where data was summarised and synthesised first individually and then collectively by the authors. Repetitive and irrelevant data were removed collectively by the authors from the charting table. Findings: The gaps identified were a paucity of research on the subject of health needs of FC of ESS, lack of longitudinal and mixed‐methods research on the health needs of FC of ESS, sparse use of social sciences perspectives and theories, research that addresses specific physical and mental health concerns beyond general descriptions and gaps in information, social networks, interventions, health policy and systems. Conclusions: Future research directions were suggested and a limitation of this scoping review are addressed in the discussion.

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Co‐production in coping with care dependency in Germany: How can integrated local care centres contribute?

Background: In Germany, most care dependent people are looked after by family members at home. Professional support can help ease the burden of caring relatives and stabilise home care. Ideally, care then is provided through the co‐production of formal and informal caregivers. Objective: This article analyses how care dependent people and their family caregivers integrate professional support into their care arrangements. Methods: An analysis was conducted using data collected for a qualitative study evaluating integrated local care centres in North‐Rhine‐Westphalia, Germany. The study is based on episodic interviews with users of these care centres and their family caregivers (N = 26). Findings: During the analysis, three interpretive and practice patterns relating to co‐production of care were identified. These patterns reveal how the interviewees deal with (increasing) needs for assistance and care while incorporating professional care into their lives. The patterns help differentiate whether the interviewees (a) use developed care skills to contribute actively to the co‐production with their layman knowledge, or (b) seek relief of their care responsibilities and withdraw temporarily from the direct sphere of care applying freed capacities to organise family daily life, or (c) use the services of the care centres to meet with other older people and to develop spaces for mutual help and co‐production. The interpretive and practice patterns thus differ in the extent to which care users and family caregivers continue to play an ‘active role’ in the care process and contribute their own knowledge, ideas, expectations and particular care activities. Conclusions: In order to achieve a functioning co‐production, professionals face the challenge of understanding these patterns that have been established over many years and of taking them into account appropriately.

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Typologies of Dementia Caregiver Support Networks: A Pilot Study

Background and Objectives: There are nearly 18 million family caregivers in the United States assisting an older adult in need of help. Identifying the caregivers in greatest need of support requires an understanding of the current social support networks available to family caregivers and whether specific groups of caregivers are at risk of having an insufficient support network. Research Design and Methods: We collected personal network data from a nationally representative sample of 66 family caregivers to persons with dementia (PWDs) in the United States aged 18 and older, including information on network members' support to the caregiver and help to the care recipient. Results: We found four common caregiving network types: large networks with many helpers; large networks primarily supporting caregivers; small, dense networks supporting both caregivers and care recipient; and small networks providing little help to either caregiver or care recipient. Gender, income, and geographic proximity of caregiver to the care recipient were significantly associated with caregiver network type. Discussion and Implications: This study suggests that there are different types of care and support networks available to caregivers to PWDs, and that the size and structure of networks vary considerably among demographic groups. As the population ages, a better understanding of the supports available to caregivers will be crucial for ensuring that caregivers are adequately supported, and caregiving needs of families are met.

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Until death do us part Adult children’s perspective of their parents’ transition from living at home to moving into a nursing home and the time after death

Background: Adult children are often key carers of frail older parents providing care for a long period of time in different care contexts. However, research concerning adult children’s caregiving experiences, from providing home-based care to facing the death of a parent in a nursing home is sparse. Thus, the aim was to explore the transition from living at home to moving into and living in a nursing home and the time after death from the perspective of next of kin to an older person. Methods: A qualitative design using individual interviews with 15 adult children of older persons. The text was analysed using inductive content analysis. Results: One main category was identified, until death do us part. With three generic categories, living at home, living at a nursing home and time after death, and eight sub-categories. The results describe the transition when an older person lives at home and moves into and lives in a nursing home and the time after death from the perspective of next of kin. Conclusion: This study highlights many examples of tasks that adult children provide over a long period of time and in different care contexts since they felt that professional care was unable to provide safe and secure care for their older parents. It also highlights the importance for staff to recognize the support that next of kin provide. Furthermore, the study reveal that staff do not offer the relief that they are obligated to provide, to enable next of kin coping with this strenuous transition in life. First after the parent died, there was time for relief since the worrying and the doing of practical things for the parent had stopped. Trial registration: Current Controlled Trials NCT02708498.

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Carers’ experiences of assistive technology use in dementia care: a cross sectional survey

Background: Assistive Technology (AT) supports persons with dementia and their carers (family, friends and neighbours), yet little is known about experiences and the impact of AT on carers. We report on an exploratory survey that examined the types, uses, costs and impact of AT on carers as well as their quality of life. Methods: A cross-sectional survey using the Carers Assistive Technology Experience Questionnaire collected data from carers in the UK, who used at least one AT in the previous year and provided more than 10 h of care for a person with dementia, living at home. Carers completed the questionnaire online or on paper and information on AT, socio-demographic details, and Short-Form Health Survey (SF-12) data were collected. Descriptive and inferential statistics were used to report results and draw conclusions. Results: Data from 201 carers was analysed. Smartphones and tablet computers were the most frequently used AT. AT were used predominantly for safety, communication, and reminders. Carers usually make decisions on buying and continued use of AT. Multiple AT devices were used in the care of persons with dementia and number of AT used was associated with perceived satisfaction. Satisfaction with AT was not related to age, living arrangements and relationship of carers. From the SF-12, Mean Physical Component Score was 49.19 (95%CI- 47.75 to 50.63) and Mental Component Score was 45.37 (95%CI- 43.93 to 46.80). Women, carers in the 46–65 age group and carers who were not extremely satisfied with AT had lower MCS scores. Carers who lived with the person with dementia and older carers had lower PCS scores. Conclusions: Carers report that AT has a beneficial impact. Carers use multiple ATs, perceive AT to be satisfactory and recommend AT use to others. To support carers, we recommend establishment of centrally funded information sources and a loan store for AT. Further research on incremental addition of AT and changes to formal/paid care because of using AT should be undertaken. Practitioners, academics, manufactures and policy makers should consider the experiences of carers in research, development and use of AT to facilitate improved community living of people with dementia. 

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Eldercare in Japan: Cluster Analysis of Daily Time-Use Patterns of Elder Caregivers

Methods: Using the data of the 2006 Japanese Survey on Time Use and Leisure Activities, we perform cluster analysis and identify seven unique patterns of daily time-use patterns of co-resident family elder caregivers: (1) ‘Overworkers’, (2) ‘Full-time Workers’, (3) ‘Part-time Workers’, (4) ‘Intensive Caregivers’, (5) ‘Houseworkers’, (6) ‘Leisurely’, and (7) caregivers, who needed medical attention on the diary day (‘Emergency Diaries’). Results: Our results show that the ‘Houseworkers’ and ‘Intensive Caregivers’ spend the most time on adult caregiving activities. Care activities for ‘Houseworkers’ are more likely to coincide with longer housework hours, increasing the total unpaid work volume. Conclusions: The analysis of demographic profiles suggests that similar daily patterns on weekdays and weekends do not belong to people with the same demographic characteristics. For instance, although on weekdays, ‘Leisurely Caregivers’ are mostly represented by the elderly taking care of other elderly, people of any age can belong to this category on weekends. Among all types of caregivers, only 'Intensive Caregivers' are as likely to be men as they can be women, suggesting that when the need for eldercare increases, family caregivers of any gender will step in.

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Educational intervention to improve palliative care knowledge among informal caregivers of cognitively impaired older adults

Objective: Lack of palliative care knowledge among caregivers may pose an access barrier for cognitively impaired older adults, who may benefit from the specialized care. Therefore, this study aims to examine the effectiveness of an educational intervention in improving palliative care knowledge among informal caregivers of cognitively impaired older adults. Method: Using a one-group, pre- and post-test intervention design, this study implemented an individual, face-to-face educational intervention with an informational brochure for 43 informal caregivers of chronically or seriously ill older adults (50+) with cognitive impairment, recruited from communities in West Alabama. Their level of knowledge about palliative care was assessed by the Palliative Care Knowledge Scale (PaCKS). The pre- and post-test scores were compared by the Wilcoxon signed-ranks test, and the racial subgroup (Whites vs. Blacks) comparison was made by the Mann–Whitney U test. Results: There was a statistically significant difference between the pre- and post-test scores (z = 5.38, p < 0.001), indicating a statistically significant effect of the educational intervention in improving palliative care knowledge among participants. There was a significant difference (U = 143, p < 0.05) between Whites and Blacks in the pre-test, which, however, disappeared in the post-test (U = 173.50, p > 0.05), suggesting that the amount of increased PaCKS scores were significantly greater for Blacks (Mdn = 9.50) than for Whites (Mdn = 4.00, U = 130.50, p < 0.05). Significance of results: This study demonstrated that a one-time educational intervention can improve the level of palliative care knowledge among informal caregivers of chronically or seriously ill older adults with cognitive impairment, particularly among Black caregivers. Therefore, further educational efforts can be made to promote palliative care knowledge and reduce racial disparities in palliative care knowledge and its use.

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Assessing psychosocial interventions for informal caregivers of older people with early dementia: A systematic review of randomized controlled evidence

Background: Dementia affects not only the patients, but also the caregivers. Timely targeted supporting for informal caregivers of people with dementia can improve their health and life quality, as well as contribute to sustainable healthcare. However, which interventions could efficiently support them and why still remains unclear. Objectives: This systematic review aims to close this gap by critically assessing the current state of randomized controlled evidence concerning informal caregivers of older people with early dementia. Methods: We searched the electronic databases PubMed, CINAHL, Embase, Cochrane and Web of Science and assessed the methodological quality of the selected studies using the validated PEDro scale. A total of 2067 studies were identified in the initial searching, and 29 randomized controlled studies were finally selected based on the rigorous inclusion and exclusion criteria. Conclusions: Through completely assessing the methodological quality of studies, and the essentials and effectiveness of the 22 different types of interventions, we identified which interventions were effective and why. Timely targeted interventions for this caregiver group remains scarce. Furthermore, we highlight that there is a lack of systematic caregiver needs assessments prior to or when delivering the interventions. 

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Digital transformation of care for older people

We are facing the 2050 aging wave that is calling us to prepare several strands of interventions to be ready on time. There is a need to foster the digital transformation of the care sector by the improvement of the digital literacy among older people, carers and care workers also using codesign approaches for the ICT usability and adoption in the social and health care domains. Moreover we need to switch from a reactive care model based on chronicity towards the adoption of a new one where citizens will be the co-maker of their own health.

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“It’s extremely hard but it’s not a burden”: A qualitative study of family caregiving for people living with dementia in Vietnam

Background: Vietnam is one of the fastest-aging countries in the world with a rising number of people with Alzheimer’s disease and related dementias (ADRD). Families in Vietnam provide most of the care for persons living with dementia, yet our understanding of their experiences and needs is limited. Objectives: This study examined the family caregiving experience in a semi-rural region outside of central Hanoi from the perspectives of family caregivers and other key informants. Methods: Semi-structured interviews were conducted with 21 key stakeholders (12 family caregivers and 9 healthcare providers and community leaders). A descriptive, thematic analysis was conducted. Results: Qualitative data analysis revealed four themes related to the family caregiving experience: 1) perceptions of dementia symptoms as a normal part of aging rather than a disease, 2) caregiving as a moral and expected familial obligation, 3) patterns of caregiving that are heavily influenced by both gender and sibling order, and 4) multiple challenges or hardships, including time constraints, loss of income, increased social isolation, a toll on their perceived physical health, and emotional distress. Caregivers rejected the notion that caregiving was a “burden” and expressed their distress through terms such as frustration, sadness, and exhaustion. Conclusions: In this low-resource setting, the stress of family caregiving may be amplified by lack of community resources, cultural stigma discouraging outside help-seeking, and economic impact of care provision. The study highlights the vulnerability and predicament of Vietnamese women who often face multiple challenges in their caregiving role as well as the urgent need for the development of community-based programs and supports.

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"Together We Stand": A Pilot Study Exploring the Feasibility, Acceptability, and Preliminary Effects of a Family-Based Psychoeducational Intervention for Patients on Hemodialysis and Their Family Caregivers

Objectives: This pilot study aimed to assess the feasibility, acceptability, and preliminary effects of a family-based psychoeducational intervention for patients undergoing hemodialysis (HD) and their family members. Methods: This was a single-group (six dyads), six-week, pre-post pilot study, delivered in a multifamily group format. Feasibility was based on screening, eligibility, content, retention, completion, and intervention adherence rates. Acceptability was assessed at post-intervention through a focus group interview. Self-reported anxiety and depression and patients' inter-dialytic weight gain (IDWG) were also measured. The screening (93.5%), retention (85.7%), and completion (100%) rates were satisfactory, whereas eligibility (22.8%), consent (18.4%), and intervention adherence (range: 16.7-50%) rates were the most critical. Results: Findings showed that participants appreciated the intervention and perceived several educational and emotional benefits. The results from the Wilcoxon Signed-Rank Test showed that a significant decrease in anxiety symptoms (p = 0.025, r = 0.646) was found, which was followed by medium to large within-group effect sizes for changes in depression symptoms (p = 0.261, r = 0.325) and patients' IDWG (p = 0.248, r = 0.472), respectively. Conclusions: Overall, the results indicated that this family-based psychoeducational intervention is likely to be feasible, acceptable, and effective for patients undergoing HD and their family caregivers; nonetheless, further considerations are needed on how to make the intervention more practical and easily implemented in routine dialysis care before proceeding to large-scale trials.

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'This is Still All about Love': Practitioners' Perspectives of Working with Family Carers Affected by the Harmful Behaviour of the Older Person for Whom They Care

Objectives: This article explores a hidden and under-acknowledged dimension of caring in family life: when older people with care needs act in a harmful, abusive or violent way towards the family member(s) who cares for them. Methods: Thirty-eight health and social care professionals, working in the UK, took part in five focus groups to explore their experience of working with families in this situation. The group discussions were stimulated by vignettes developed from interviews with carers affected by harmful behaviour, and the data generated using this method were analysed using a thematic approach. Findings: There were two principal findings: (i) 'carer harm' is a serious and under-acknowledged problem, which practitioners have extensive experiential knowledge of and (ii) practitioners face considerable practical and ethical challenges working with affected families. Conclusions: Drawing on Miranda Fricker's concept of epistemic injustice, we discuss how contemporary social, legal and policy systems can make it difficult for practitioners to identify and meet the needs of affected families. Finally, we explore the role of social workers-and the support they need as a professional group-to work alongside a 'hidden' group of families seeking to manage the intersection of care, harm and intimacy in later life.

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“A World Upside Down”: Experiences of Informal Caregivers During the COVID-19 Pandemic

Background: The caregiving process may result in negative outcomes for caregivers. The coronavirus disease 2019 pandemic has contributed additional challenges for family caregivers of older adults with chronic illnesses. Little is known about the additional impact of the pandemic on caregivers. Objectives: The purpose of the current study was to understand the effects of the pandemic on the caregiving experience. Methods: A qualitative descriptive content analysis was conducted on nine blogs of caregivers of older adults. Blogs were identified using purposive sampling. Bloggers were American, middle-aged, and caring for an older adult with dementia. Findings: Caregivers reported “a world upside down” and change that contributed to uncertainty; the need for support; and how isolation, depressive symptoms, and threat contributed to negative psychological well-being. Managing and struggling in response to caregiving challenges and wishing for resolution were also reported. Conclusions: Blogs of caregivers of older adults with chronic illness yielded important information that may be useful to clinicians. 

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“You Feel Very Isolated”: Effects of COVID-19 Pandemic on Caregiver Social Connections

Background: One in five individuals in the United States provides care and support to ill, disabled, and aging family members in the home, leading to feelings of burden, stress, and poor health and well-being. Social support represents an important buffer for family caregivers that allows them to feel less isolated and more positive about their caregiving role. Methods: This sequential mixed-methods study aimed to examine the effect of the COVID-19 pandemic on family caregivers’ social connections. Eighty-two caregivers completed a web-based survey which comprised of fixed-choice and open-ended questions. Results: Survey data showed that the majority of caregivers (83%) reported an increase in stress and feeling lonely (77%) during the pandemic. Qualitative interviews with a subsample of caregivers (n=27) further explored social connections during the pandemic. Three themes echoed the quantitative findings and centered around defining boundaries, intentionality in social interactions, and loss of social resources. Although caregivers were often strained by new or increased caregiving demands, many experienced positive changes such as feeling a deeper connection with the care-recipient. Conclusions: Findings from this study highlight the need for further consideration of the impact of social isolation on the well-being of caregivers. 

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"Why Couldn't I Go in To See Him?" Bereaved Families' Perceptions of End‐of‐Life Communication During COVID‐19

Background/Objective: The COVID‐19 pandemic has resulted in rapid changes to end‐of‐life care for hospitalized older adults and their families, including visitation restrictions. We examined bereaved families' perceptions of the quality of end‐of‐life communication among Veterans, families and staff in Veterans Affairs (VA) medical centers during the COVID‐19 pandemic. Design: Qualitative descriptive study using data from a survey of bereaved family members of Veterans administered from March–June 2020. Data were analyzed using qualitative content analysis. Setting: VA medical centers with the highest numbers of COVID‐19 cases during the study period. Participants: Next‐of‐kin of 328 Veterans who died in one of 37 VA medical centers' acute care, intensive care, nursing home, or hospice units. Measurements: Open‐ended survey questions (response rate = 37%) about family member's perceptions of: (1) communication with the healthcare team about the patient, (2) communication with the patient, and (3) use of remote communication technologies. Results: Bereaved family members identified contextual factors perceived to impact communication quality including: allowing family at the bedside when death is imminent, fears that the patient died alone, and overall perceptions of VA care. Characteristics of perceived high‐quality communication included staff availability for remote communication and being kept informed of the patient's condition and plan of care. Low‐quality communication with staff was perceived to result from limited access to staff, insufficient updates regarding the patient's condition, and when the family member was not consulted about care decision‐making. Communication quality with the patient was facilitated or impeded by the availability and use of video‐enabled remote technologies. Conclusion: Communication between patients, families, and healthcare teams at the end of life remains critically important during times of limited in‐person visitation. Families report that low‐quality communication causes profound distress that can affect the quality of dying and bereavement. Innovative strategies are needed to ensure that high‐quality communication occurs despite pandemic‐related visitation restrictions.

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Who is taking care of the Chinese functionally impaired older people? The characteristics of family caregivers from China Health and Retirement Longitudinal Study

Objective: To investigate caregiving in terms of personal, family and living arrangement among Chinese functionally impaired older people. Methods: A secondary cross‐sectional analysis of data obtained from China Health and Retirement Longitudinal Study (CHARLS) was performed. Among 6,252 participants aged 65 years or older, people with at least one indicator of Activities of Daily Living Scales (ADLs) of disabilities were included in this research. Statistical analyses included chi‐square tests and multiple logistic regression modelling. Results: Data of 973 functionally impaired people aged 65 and over, and 2772 adult offspring were extracted and analysed. The level of impairment, age, gender, marital status of the functionally impaired older people, adult offspring's income and living status were significantly associated with caregiving types. Conclusion: This research describes the characteristics of functionally impaired older people and their caregivers, which may help improve the efficiency, quality and equity within the Chinese social care system.

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Which factors increase informal care hours and societal costs among caregivers of people with dementia? A systematic review of Resource Utilization in Dementia (RUD)

Background: Nearly 19 million people across OECD countries are living with dementia, and millions of family caregivers are affected by the disease. The costs of informal care are estimated to represent 40–75% of the total dementia cost exceeding formal care time and medical costs. Objective: To conduct a systematic review to evaluate the methodological quality and factors associated with high informal care hours per month that increase societal costs, and to identify what type of interventions may alleviate the entire burden of informal and formal caregiving. Methods: The systematic review was registered at PROSPERO (15.12.2020). A search in Medline, Embase, PsycINFO, and web of science for observational studies, cost-effectiveness, and cost of illness (COI) analyses on resource utilization in dementia (RUD) was conducted on 1 December 2020. Our inclusion criteria included a requirement that studies had to use the original RUD, RUD-FOCA or RUD lite in terms of hours or days per month, and costs as primary or secondary outcome, OECD countries, within the last 20 years and a sample population comprising persons with dementia (PwD) ≥65 years and their caregivers. We followed the PRISMA, GRADE, PICO guidelines and Drummond criteria to assess the methodology and quality of the studies. Results: Of 307 studies, 26 cross-sectional and 3 longitudinal cohort studies were included in the analyses. Two studies had a randomized controlled trial (RCT) design. The methods and cost categories in each study varied widely. Disease severity, caregiver factors, and behavioural and psychological symptoms of dementia (BPSD) were associated with high informal care hours and societal cost. One RCT found no effect of a non-pharmacological intervention on informal care hours, yet another RCT found a cost-effective impact of an in-home respite care programme reducing informal care burden and costs. Conclusion: The divergent use of the RUD components within included studies encourage more harmonized analyses. There are only two RCTs on RUD, one of which shows a significant treatment effect. Larger sample sizes and longer follow-up periods are required in future RCTs with dedicated focus on cost-enhancing and resource intensive factors such as disease severity and BPSD. Novel interventions must diversify between caregiver and PwD groups. PROSPERO registration: CRD42021226388. 

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What do family care-givers want from domiciliary care for relatives living with dementia? A qualitative study

Background: In the current ecology of care, social, rather than medical, support is critical in enabling frail older people to live at home. Objectives: This paper reports findings from a qualitative study about how home care workers (HCWs) support persons with dementia living in the community. Methods: Semi-structured qualitative interviews were carried out in England with 14 family care-givers (FCGs) recruited from a single private home care provider. A thematic analysis of the data was undertaken using the constant comparative method. Results: In every instance, it was FCGs who initiated domiciliary care for the person with dementia, highlighting ambiguity about who is the 'client'. Rather than focusing on the HCWs' work in undertaking practical tasks and personal care, respondents prioritised HCWs as companions, providing emotional and social support for their relatives. From an organisational perspective, respondents valued the capacity of the provider to deliver a consistent, personal, reliable and punctual service. These attributes were important in supporting their relative's agency and dignity. Respondents described HCWs engaging in skilled and sensitive communication with clients but considered 'character' and 'innate' caring abilities to be more important than those derived from training. Conclusions: The results highlight the need to acknowledge the family, rather than the individual client, as the functioning unit of care, and to recognise the highly skilled communicative and emotional work undertaken by HCWs.

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What are the shared decision‐making experiences of adult children in regard to their parent/s' health care in residential aged care facilities?

Aim: This scoping literature review aimed to answer the question: What are the shared decision‐making experiences of adult children in regard to their parent/s' health care in residential aged care facilities? Background: Shared decision‐making has been an important patient‐centred approach to nursing care since the 1990s, yet it is becoming increasingly evident that it is still not the reality in aged care facilities fifty years on. Currently, it is not well understood how adult children participate in shared decision‐making and the types of decisions they are required to make. Design: A review of original research papers using Kable, Pich and Maslin‐Prothero 12‐step systematic approach to documenting a search strategy. Method: The researcher screened 597 articles from four databases, published in the English language, during the period 1985–2019. The researcher used the Mixed Methods Appraisal Tool version 2011 to determine the methodological quality of the included studies. The Joanna Briggs Institute QARI data tool was used to appraise the seven selected articles and thematically analyse findings, respectively. Results: Four themes were highlighted: communication; staffing; being involved; and staff–family relationships. Despite these themes being apparent, families have limited opportunities to participate in shared health decision‐making in regard to their parents' care. Conclusion: The findings from this literature show how shared decision‐making is affected by the RACF environment. There is a need to find out and understand what is important from a family member's point of view to optimise shared decision‐making and nursing care of the family member in residential aged care settings. Relevance to clinical practice: The limited findings specific to the SDM experiences of adult children of parents in RACFs in this review could help staff and RACFs to develop strategies and staff training to encourage and facilitate the implementation of shared health decision‐making with staff and families on older people's care.

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Well‐being losses by providing informal care to elderly people: Evidence from 310 caregivers in Shanghai, China

Background: A series of policies aimed toward rational resource allocation of long‐term care have being actively discussed since the launch of the social long‐term care insurance in Shanghai, and it is important to take a societal perspective for informed decision‐making. Objectives: This study aims to explore factors that are associated with well‐being of informal caregivers in Shanghai, and to provide empirical evidence of application of an established well‐being valuation method to monetise informal caregivers' well‐being losses in a developing country. Methods: 310 informal caregivers of applicants for social long‐term care insurance in Shanghai were interviewed. Univariate and multivariate analyses were conducted to explore the associated factors with life satisfaction of the caregivers. The monetary values of an additional hour of caregiving with and without specification of care tasks were estimated by the well‐being valuation method. Results: Life satisfaction was consistently associated with monthly income, health status, and caring hours of the caregivers. The money needed to compensate one additional hour of caring per week was 12.58 CNY (0.3% of the monthly income), and 96.95 CNY (2.0% of the monthly income) for activities of daily living (ADL) tasks. Income, health status, and caregiving are significantly associated with well‐being of informal caregivers. Conclusions: Caregivers in relatively poor health condition and/or involved in more ADL tasks should be particularly considered in supporting policies in Shanghai.

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Wearable Devices for Assessing Function in Alzheimer's Disease: A European Public Involvement Activity About the Features and Preferences of Patients and Caregivers

Background: Alzheimer’s Disease (AD) impairs the ability to carry out daily activities, reduces independence and quality of life and increases caregiver burden. Our understanding of functional decline has traditionally relied on reports by family and caregivers, which are subjective and vulnerable to recall bias. The Internet of Things (IoT) and wearable sensor technologies promise to provide objective, affordable and reliable means for monitoring and understanding function. However, human factors for its acceptance are relatively unexplored. Objective The Public Involvement (PI) activity presented in this paper aims to capture the preferences, priorities and concerns of people with AD and their caregivers for using monitoring wearables. Their feedback will drive device selection for clinical research, starting with the study of the RADAR-AD project. Method: The PI activity involved the Patient Advisory Board (PAB) of the RADAR-AD project, comprised of people with dementia across Europe and their caregivers. A set of four devices that optimally represent various combinations of aspects and features from the variety of currently available wearables (e.g. weight, size, comfort, battery life, screen types, water-resistance and metrics) was presented and experienced hands-on. Afterwards, sets of cards were used to rate and rank devices and features and freely discuss preferences. Results: Overall, the PAB was willing to accept and incorporate devices into their daily lives. For the presented devices, the aspects most important to them included comfort, convenience and affordability. For devices in general, the features they prioritized were appearance/style, battery life and water resistance, followed by price, having an emergency button and a screen with metrics. The metrics valuable to them included activity levels and heart rate, followed by respiration rate, sleep quality and distance. Some concerns were the potential complexity, forgetting to charge the device, the potential stigma and data privacy. Conclusions: The PI activity explored the preferences, priorities and concerns of the PAB, a group of people with dementia and caregivers across Europe, regarding devices for monitoring function and decline, after a hands-on experience and explanation. They highlighted some expected aspects, metrics and features (e.g., comfort and convenience), but also some less expected (e.g. screen with metrics).

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“We are humans after all”: Family caregivers’ experience of caring for dependent older adults in Brazil

Objective: This paper aims to understand the experiences of family caregivers with dependent older adults in Brazil and the consequences of caring for dependent older adults in the family caregiver’s life. Methods: This is a qualitative multicenter study employing dialectical hermeneutics as a theoretical framework. In-depth interviews were conducted with 84 family caregivers in Brasília, Rio de Janeiro, Belo Horizonte, Fortaleza, Teresina, Porto Alegre, and Araranguá, and Manaus. Findings: The thematic analysis yielded three categories: motivations for taking on the caregiving role, influences on the family caregiver’s life, coping, and self-care modalities. The care assumed is influenced by affective relationships with older adults and ethical and moral responsibilities. The influences are related to the lack of preparation for caregiving, financial hardship, restricted freedom, and physical and mental health problems. Coping strategies were religion, spirituality, turn-taking between family caregivers, and learning about the tasks. Conclusions: Women predominate in caregiving due to cultural, ethical, and moral reasons. However, family caregivers often lack guidance and require protection and a support network. 

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Virtual support group for family caregivers of elderly people with dementia in the COVID- 19 scenery

Introduction: The physical, mental and social status of family caregivers and their care demands have been largely overlooked. This fact has been no different during the COVID-19 pandemic. Therefore, home care will need updates for this new pandemic context, prioritizing the provision of personalized guidance for family caregivers. Objective: To minimize the impact on the mental health of family caregivers of people with dementia through the virtual support group for family caregivers. Method: The research was developed from the performance of support groups for family caregivers in dementia in the virtual format. The meetings were weekly, lasting 2 hours and the themes were worked out according to the group's demands. All meetings were recorded, transcribed, and analyzed using thematic content analysis. Results: In the 8 meetings, 10 family caregivers participated and 5 thematic categories were identified: technology; the routine in the COVID-19 pandemic; behavioral changes and their relationship with the caregiver's mental health; the support network as a health marker; and the new way of carrying out meaningful activities. Conclusion: The support group in the virtual format proved to be a powerful tool for accessing information and guidance concerning dementia, about family care and actions aimed at the caregiver's self-care, with an impact on their emotional state and well-being, minimizing the feeling of social isolation during the COVID-19 pandemic.

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Valuing the caregiver: a feasibility study of an acceptance and commitment therapy (ACT) group intervention for dementia caregivers

Purpose: This study aims to investigate the feasibility and acceptability of a new group intervention, using an acceptance and commitment therapy (ACT) approach, developed for dementia caregivers. Preliminary data regarding the effectiveness of the intervention was also collected. Design/methodology/approach: A quasi-experimental design is used involving pre- and post-intervention data from four different intervention sites, along with three-month follow-up data. Data on attendance, attrition and qualitative feedback was also collected as an indication of acceptability. A total of 23 people currently caring for a family member with dementia attended the ACT group intervention for five sessions. Detailed evaluation forms were collected at the end of each group, along with four self-report questionnaires: Zarit Burden Interview, Positive Aspects of Caregiving Scale, Dementia Management Strategies Scale and Experiential Avoidance in Caregiving Questionnaire. Findings: Findings indicate that the group intervention was feasible and acceptable to caregivers, with subjective change reported in understanding of behavioural changes in the care-recipient, ability to handle negative emotions and valued living. These changes were not reflected in the outcome measures, with only one change reaching statistical significance (reduction in “intolerance of negative thoughts and emotions towards the relative”). Suggestions are made regarding possible alternative outcome measures for future studies to capture participants’ experience more fully, along with potential adaptations and future directions for the intervention. Originality/value: This study provides preliminary evidence of the acceptability and feasibility of a group therapeutic intervention based on ACT for informal caregivers of dementia.

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Use of complementary medicines and lifestyle approaches by people living with dementia: Exploring experiences, motivations and attitudes

Background: Lack of effective treatments for chronic conditions is associated with high rates of complementary medicine (CM) use. However, little is known about CM use for dementia.Aims and Objectives: The aim of this study was to explore the experiences, motivations, and attitudes towards CM use by people living with dementia in an Australian setting. Design: This study had a qualitative research design; quantitative demographic information was also collected. Methods: In‐depth interviews were conducted with people living with dementia and their caregivers (N = 18). A thematic (inductive) analysis approach was taken to interpret data. Results: Three in four participants used CM for dementia, spending ~AUD$100/month (USD$70/month). Within three overarching themes, a range of sub‐themes was identified: (1) CM knowledge and use: people living with dementia and caregivers understanding of CM, types of CM used, and CM usage patterns; (2) Self‐determined reasons for use/non‐use: maintain or improve quality of life, hope, management of dementia symptoms, level of awareness, willingness and evidence, perceptions on efficacy and safety of CM, experiences of conventional medicine, and holistic approach to wellness; (3) External determinants of use: information on CM, relationship influences on CM use, and experiences with General Practitioners (GPs) and CM. Conclusion: Findings highlight that CM use is widespread and positively viewed by people living with dementia and their caregivers. Decisions regarding CM use were based on personal opinions. Findings have important implications for conversations with health professionals regarding CM use by people living with dementia to improve communication, health literacy, and reduce the risk of adverse effects through polypharmacy. Implications for Practice: This study showed that CM is a valued approach for dementia management by people living with dementia, their families, and healthcare providers. Future international research is required to evaluate the efficacy and safety of these approaches and promote accurate advice in nursing care.

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Untangling the inter-relatedness within integrated care programmes for community-dwelling frail older people: a rapid realist review

Objective: To identify the relationships between the context in which integrated care programmes (ICPs) for community-dwelling frail older people are applied, the mechanisms by which the programmes do (not) work and the outcomes resulting from this interaction by establishing a programme theory. Design: Rapid realist review. Inclusion criteria: Reviews and meta-analyses (January 2013–January 2019) and non-peer-reviewed literature (January 2013–December 2019) reporting on integrated care for community-dwelling frail older people (≥60 years). Analysis: Selection and appraisal of documents was based on relevance and rigour according to the Realist And Meta-narrative Evidence Syntheses: Evolving Standards criteria. Data on context, mechanisms, programme activities and outcomes were extracted. Factors were categorised into the five strategies of the WHO framework of integrated people-centred health services (IPCHS). Results: 27 papers were included. The following programme theory was developed: it is essential to establish multidisciplinary teams of competent healthcare providers (HCPs) providing person-centred care, closely working together and communicating effectively with other stakeholders. Older people and informal caregivers should be involved in the care process. Financial support, efficient use of information technology and organisational alignment are also essential. ICPs demonstrate positive effects on the functionality of older people, satisfaction of older people, informal caregivers and HCPs, and a delayed placement in a nursing home. Heterogeneous effects were found for hospital-related outcomes, quality of life, healthcare costs and use of healthcare services. The two most prevalent WHO-IPCHS strategies as part of ICPs are ‘creating an enabling environment’, followed by ‘strengthening governance and accountability’. Conclusion: Currently, most ICPs do not address all WHO-IPCHS strategies. In order to optimise ICPs for frail older people the interaction between context items, mechanisms, programme activities and the outcomes should be taken into account from different perspectives (system, organisation, service delivery, HCP and patient).

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Unmet family caregiver training needs associated with acute care utilization during home health care

Background/Objectives: Medicare-certified home health agencies are required to offer family caregiver training, but little is known regarding the potential impact of this training on outcomes during home health care. We estimate the proportion of family caregivers assisting Medicare home health patients who have unmet training needs and examine whether these unmet training needs are associated with older adults' risk of acute care utilization during home health care. Design: Observational, nationally representative cohort study. Setting: Linked National Health and Aging Trends Study, Outcome and Assessment Information Set (OASIS), Medicare Provider of Services file, and Medicare claims data from 2011 to 2016. Participants: Thousand two hundred seventeen (weighted n = 5,870,905) community-living Medicare beneficiaries who received home health care between 2011 and 2016. Measurements: Family caregivers' unmet training needs measured from OASIS and Medicare claims; home health patients' acute care utilization (including emergency department use and hospitalization) measured from OASIS. Results: Rates of unmet need for training varied by activity, from 8.2% of family caregivers assisting with household chores to 16.0% assisting with self-care tasks. After controlling for older adult and home health provider characteristics, older adults whose family caregivers had an unmet need for training with any caregiving activity were twice as likely to incur acute care utilization during their home health episode (adjusted odds ratio [aOR]: 2.01, 95% confidence interval [CI]: 1.20–3.38). This relationship held across specific caregiving activities including household chores (aOR: 1.98; 95% CI: 1.13–3.46), medication management (aOR: 2.50; 95% CI: 1.46–4.26), patient supervision (aOR: 2.92; 95% CI: 1.36–6.24), and self-care tasks (aOR: 3.11; 95% CI: 1.62–6.00). Conclusions and Relevance: Unmet training needs among family caregivers are associated with greater likelihood of acute care utilization among Medicare beneficiaries receiving home health care. Identifying and addressing family caregivers' training needs may reduce older adults' risk of acute care utilization during home health care. 

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Willingness and preparedness to provide care: interviews with individuals of different ages and with different caregiving experiences

Background: At present, the provision of informal care to older relatives is an essential pillar of the long-term care system in Germany. However, the impact of demographic and social changes on informal caregiving remains unclear. Methods: Thirty-three semi-structured interviews were conducted with care consultants, informal caregivers and people without any caregiving experience to explore if people are willing to provide older adult care and how prepared these are with regard to the possibility of becoming care dependent themselves. Results: In total, three main categories (willingness to provide care, willingness to receive care and information as preparation) with several sub-categories were identified during the content analysis. While almost all interviewees were willing to provide care for close family members, most were hesitant to receive informal care. Other factors such as the available housing space, flexible working hours and the proximity of relatives were essential indicators of a person’s preparedness to provide informal care. It is, however, unclear if care preferences change over time and generations. Six out of 12 informal caregivers and nine out of 14 care consultants also reported an information gap. Because they do not possess adequate information, informal caregivers do not seek help until it is too late and they experience high physical and mental strain. Despite the increased efforts of care consultants in recent years, trying to inform caregivers earlier was seen as almost impossible. Conclusions: The very negative perception of caregiving as a burden was a reoccurring theme throughout all interviews and influenced people’s willingness to receive care as well as seeking timely information. Despite recent political efforts to strengthen home-based care in Germany, it remains unclear whether political efforts will be effective in changing individuals’ perceptions of informal caregiving and their willingness to be better prepared for the highly likely scenario of having to care for a close relative or becoming care dependent at a later stage in life.

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Why We Are Failing Family Caregivers

In the article, the author discusses the challenges facing family caregivers in the U.S. and the alleged failure by the government to support their needs by citing her experiences in caring for her parents, who both suffered from cancer. Other topics include the lack of information on the various support groups, programs and services offered to vulnerable elders and their caregivers by the government and nonprofit organizations.

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Understanding the positive outcomes of discharge planning interventions for older adults hospitalized following a fall: a realist synthesis

Background: Older adults hospitalized following a fall often encounter preventable adverse events when transitioning from hospital to home. Discharge planning interventions developed to prevent these events do not all produce the expected effects to the same extent. This realist synthesis aimed to better understand when, where, for whom, why and how the components of these interventions produce positive outcomes. Methods: Nine indexed databases were searched to identify scientific papers and grey literature on discharge planning interventions for older adults (65+) hospitalized following a fall. Manual searches were also conducted. Documents were selected based on relevance and rigor. Two reviewers extracted and compiled data regarding intervention components, contextual factors, underlying mechanisms and positive outcomes. Preliminary theories were then formulated based on an iterative synthesis process. Results: Twenty-one documents were included in the synthesis. Four Intervention-Context-Mechanism-Outcome configurations were developed as preliminary theories, based on the following intervention components: 1) Increase two-way communication between healthcare providers and patients/caregivers using a family-centered approach; 2) Foster interprofessional communication within and across healthcare settings through both standardized and unofficial information exchange; 3) Provide patients/caregivers with individually tailored fall prevention education; and 4) Designate a coordinator to manage discharge planning. These components should be implemented from patient admission to return home and be supported at the organizational level (contexts) to trigger knowledge, understanding and trust of patients/caregivers, adjusted expectations, reduced family stress, and sustained engagement of families and professionals (mechanisms). These optimal conditions improve patient satisfaction, recovery, functional status and continuity of care, and reduce hospital readmissions and fall risk (outcomes). Conclusions: Since transitions are critical points with potential communication gaps, coordinated interventions are vital to support a safe return home for older adults hospitalized following a fall. Considering the organizational challenges, simple tools such as pictograms and drawings, combined with computer-based communication channels, may optimize discharge interventions based on frail patients’ needs, habits and values. Empirically testing our preliminary theories will help to develop effective interventions throughout the continuum of transitional care to enhance patients’ health and reduce the economic burden of avoidable care.

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Understanding the client and family experience of neuropsychological evaluation

Background: Neuropsychological evaluation serves a number of health-related purposes, but little is known about how the evaluation process is experienced by clients and their family members. In this article, we describe a quality improvement initiative that utilized a mixed-methods approach to explore personal goal attainment and satisfaction by clients and family members engaging in the evaluation process. Methods: We retrospectively reviewed data collected over a 5-year period from a neuropsychological evaluation service at a tertiary geriatric care center. At the outset of the evaluation, 492 clients and family members identified goals to better understand the client's cognition and to obtain recommendations for managing cognitive changes; the large majority of these goals were rated as achieved by the end of the feedback session. Results: At service completion, 657 clients and family members completed satisfaction questionnaires, and over 90% of respondents endorsed the highest level of satisfaction. Qualitative content analysis identified clinician behaviors, quality of care, and environmental factors as important aspects of the client and family experience. Findings were used to improve the delivery of client-centered, evidence-based care. Conclusion: The results of this initiative demonstrate the feasibility and utility of incorporating client and family goals and feedback into routine clinical practice. Practical suggestions and relevant tools are provided to assist the professional psychologist in implementing quality improvement processes in their own practices.

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Work, Leisure Time Activities, and Mental Health among Family Caregivers of the Elder People in Japan

Background: In Japan, there is a high incidence of family members caring for their elderly. To facilitate this, caregivers often quit their jobs, work reduced hours, and forfeit leisure activities. Objectives: This study examined the relationship between the mental health of the caregivers and the sacrifices and adjustments they make to care for the elderly. Methods: A cross-sectional survey was conducted with responses from 171 caregivers. Referencing Pearlin’s stress process model, the relationship among five types of work change, four types of leisure activity quitting, caregivers’ subjective care burden, and depression were analyzed using t-test and multiple regression analysis. Methods: Caregivers who quit their work or other home activities had significantly more daily living care responsibilities than those who did not. Moreover, caregivers who gave up leisure activities had a greater sense of subjective care burden than those who did not. The experience of giving up peer activities and taking leave of absence from work was significantly associated with increased depressive symptoms. Being a part-timer or financially prosperous was associated with good mental health. Conclusions: To support family caregivers, it is essential to reduce the burden of long-term care and provide financial help and an environment where they interact with their peers, and their moods can be enhanced.

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'You become their advocate': The experiences of family carers as advocates for older people with dementia living in residential aged care

Aims: The aim of this study was to identify features of well‐performing residential aged care services (RACS) as experienced by family carers. Background: Family carers can have an integral role in residential aged care providing social support and are well‐placed to engage with staff and monitor care. Design: A qualitative descriptive design was used. Semi‐structured face‐to‐face and telephone interviews were conducted with family carers of current or past residents of Australian RACS between November 2018 and January 2019. Interview transcripts were analysed thematically. Results: Rather than reporting features of well‐performing RACS, participants shared stories of sub‐standard care, dysfunctional management and poor resident–staff–family interactions. An overarching theme emerged of 'having to be an advocate' for residents' needs, which covered four major categories: organisational accountability (including transparency and individualised care), good communication, connection and trust. Combined, these constitute what carers perceive are the necessary conditions for determining the features of a well‐performing RACS. Conclusion: Family carers need to feel confident and trust RACS staff when they hand over the role of carer for their relative with dementia. Relevance to clinical practice: This study provides insight into the needs and challenges of family carers when they relinquish the care of an older relative with dementia. Strategies to build confidence and trust between RACS and family carers are essential. Aged care nurses can play a pivotal role to support this through the development of open communication and relational connections with residents and their families.

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Web-Based Delivery of the Caregiving Essentials Course for Informal Caregivers of Older Adults in Ontario: Mixed Methods Evaluation Study

Background: Many informal caregivers of older adults have limited time because of the number of responsibilities that their caregiving role entails. This population often experiences high levels of burden due to the stressful nature of their work and are vulnerable to developing negative psychological health outcomes. Easily accessible and flexible knowledge interventions are needed to alleviate the burden and stress experienced by this group. Objective: This study aims to evaluate the acceptability of the web-based delivery of the Caregiving Essentials course for informal caregivers of older adults. Both the strengths and limitations of using a web-based platform to provide information and resources were explored to see whether the method of delivery enhanced or hindered the overall course experience for participants. Methods: A mixed methodology of web-based pre- (n=111) and postcourse surveys (n=39) and telephone interviews (n=26) was used to collect both qualitative and quantitative data from participants. Individual interviews were also conducted with key stakeholders (n=6), and a focus group was conducted with nursing students (n=5) who were involved in the project. Results: The web-based delivery of the course provided participants with greater accessibility to the course because it allowed them to work independently through the modules at their own pace wherever and whenever. The discussion boards were also identified as a major strength because of the opportunity for social interaction and the sense of community that many felt through sharing their experiences. Some barriers to participation included age-related factors, issues with navigating aspects of the course, and concerns about privacy and anonymity. Some key suggestions included more engaging methods of web-based communication and the reorganization of the module content to reduce the amount of text and streamline information. Conclusions: The web-based delivery of Caregiving Essentials appeared to enhance the overall course experience by increasing accessibility and allowing participants to interact with the learning materials and other caregivers. The findings from this evaluation can be used to create and improve the web-based delivery of both the current and emerging interventions for caregivers.

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A typology of caregiving spouses of geriatric patients without dementia: caring, worried, desperate

Background: An increasing number of older people in Germany receive care at home from family members, particularly from spouses. Family care has been associated not only with subjective burden but also with negative effects on caregivers’ health. A heterogeneous group, caregivers are confronted with individual situational demands and use different available coping strategies. To date, little is known about the relationship between burden and coping by spousal caregivers, particularly in the context of geriatric patients without dementia. Objectives: The aim of this study is to explore the burden and coping strategies of caregiving spouses of geriatric patients without dementia and with a hospitalization within the last year. To help explore this population, a typology is presented that has been based on reported perceptions of home care burden and individual coping strategies. Furthermore, a case study is presented for each type of spousal caregiver. Methods: The study used a concurrent mixed method design with a sample of nine spousal caregivers (mean age: 78.9 years). Four women and five men were recruited in an acute hospital setting during the TIGER study. Quantitative data were collected using a self-questionnaire and qualitative data were gathered through nine problem-centered interviews with spousal caregivers. The latter were subsequently analyzed utilizing the structured content analysis method. The data were then summarized to nine individual cases. Finally, the results were clustered using the empirically grounded construction of types and typologies. Each type of spousal caregiver is presented by a case study. Results: Three types of caregiving spouses were identified: “The Caring Partner”, “The Worried Manager” and “The Desperate Overburdened”. These types differ primarily in the level of subjective burden and caregiving stress, the coping strategies, the motivation for caregiving, and expressed emotions. Conclusions: The development of this new typology of caregiving spouses could help health care professionals better understand caregiving arrangements and thus provide more targeted advice. Trial registration The TIGER study was registered with clinicaltrials.gov: NCT03513159. Registered on April 17, 2018.

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The Turkish version of the SPPIC validated among informal caregivers with a Turkish immigrant background

Background: This study assesses the internal consistency and known group validity of the Turkish version of the SPPIC, a measurement instrument to assess the self perceived pressure from informal care in family caregivers of people with dementia that was originally in Dutch. Methods: The feasibility, comprehensibility and appropriateness of the Turkish SPPIC were assessed during a pilot test. Internal consistency was examined based on data from 117 family caregivers with a Turkish immigrant background by calculating Cronbach’s alpha and by conducting a single-factor Confirmatory Factor Analysis (CFA). Known group validity was determined to obtain an understanding of the validity of the translated instrument, testing differences in the self-perceived pressure from informal care, depending on frequency of caregiving, living with a person with dementia and level of education. Results: The pilot test showed that the translated SPPIC was considered to be feasible, comprehensible and appropriate. The internal consistency appeared to be strong (Cronbach’s alpha: 0.94). The CFA indicated that the factor ‘Self-perceived Pressure from Informal Care’ explained varying levels of variance in the items of the SPPIC (ranging from .52 to .87). Family caregivers who provided care at least once a week and who shared a home with a person with dementia perceived a greater pressure from informal care (p = 0.007, p = 0.001). Conclusions: The Turkish translation of the SPPIC can be used in future research and practice to obtain insight into self-perceived pressure from informal care of family caregivers with Turkish immigrant backgrounds. At the same time it is recommended to conduct more research on how the measurement of self-perceived pressure from informal care in this group can be further improved.

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Why Is It Just So Hard? Making Sense of End-of-Life Communication Between Adult Children and Their Terminally Ill Parental Figures

Background: The aging population in the United States is predicted to become one fifth of the population by 2050. With that increase, more individuals in the country will be experiencing chronic health conditions and the need for care, with end of life (EoL) becoming more of a topic that needs to be discussed. Objectives & Methods: This study aims to explore the ways adult children talk to their parents about EoL, death, and dying. Findings: We discovered six themes: protection, meeting needs, guilt and regret, control, family dynamics, and communication type. Each of these was prevalent in responses to how adult children cope, how they cared for their parent, and how hope played into the interactions. Conclusions: We believe these themes will be helpful in developing a quantitative scale to study EoL further and be practical in helping adult children cope following death of their parent.

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'Traversing difficult terrain'. Advance care planning in residential aged care through multidisciplinary case conferences: A qualitative interview study exploring the experiences of families, staff and health professionals

Background: Advance care planning improves the quality of end-of-life care for older persons in residential aged care; however, its uptake is low. Case conferencing facilitates advance care planning. Aim: To explore the experience of participating in advance care planning discussions facilitated through multidisciplinary case conferences from the perspectives of families, staff and health professionals. Design: A qualitative study (February–July 2019) using semi-structured interviews. Setting: Two residential aged care facilities in one Australian rural town. Participants: Fifteen informants [family (n = 4), staff (n = 5), health professionals (n = 6)] who had participated in advance care planning discussions facilitated through multidisciplinary case conferences. Results: Advance care planning was like navigating an emotional landscape while facing the looming loss of a loved one. This emotional burden was exacerbated for substitute decision-makers, but made easier if the resident had capacity to be involved or had previously made their wishes clearly known. The 'conversation' was not a simple task, and required preparation time. Multidisciplinary case conferences facilitated informed decision-making and shared responsibility. Opportunity to consider all care options provided families with clarity, control and a sense of comfort. This enabled multiple stakeholders to bond and connect around the resident. Conclusion: While advance care planning is an important element of high quality care it involves significant emotional labour and burden for families, care staff and health professionals. It is not a simple administrative task to be completed, but a process that requires time and space for reflection and consensus-building to support well-considered decisions. Multidisciplinary case conferences support this process.

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Transitioning to Long-Term Care: Family Caregiver Experiences of Dementia, Communities, and Counseling

Objectives: Previous analyses of interventions targeting relationships between family caregivers of people with Alzheimer's disease and related dementias and residential long-term care (RLTC) staff showed modest associations with caregiver outcomes. This analysis aimed to better understand interpersonal and contextual factors that influence caregiver–staff relationships and identify targets for future interventions to improve these relationships. Methods: Using a parallel convergent mixed methods approach to analyze data from an ongoing counseling intervention trial, descriptive statistics characterized the sample of 85 caregivers and thematic analyses explored their experiences over 4 months. Results: The findings illustrated that communication, perceptions of care, and relationships with staff are valued by family caregivers following the transition of a relative with dementia to RLTC. Discussion: The findings deepen understanding of potential intervention targets and mechanisms. These results can inform future psychosocial and psychoeducational approaches that assist, validate, and empower family caregivers during the transition to RLTC.

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Transforming lived places into the connected neighbourhood: a longitudinal narrative study of five couples where one partner has an early diagnosis of dementia

Background: To support people with dementia to live at home, a key national and international policy driver is to create dementia-friendly communities which draws attention to the importance of a local neighbourhood and living well with dementia. However, there is a lack of evidence about how people with dementia define and interact with their neighbourhood. Methods: This longitudinal narrative research aimed to uncover the meaning, construction and place of neighbourhood in the lives of people with dementia and their care partners through a participatory approach. Five couples, where one partner had an early diagnosis of dementia and capacity to consent, participated in the (up to) one-year mixed qualitative method study. During this time-frame, 65 home visits were conducted, resulting in over 57 hours of interview data alongside the development of other artefacts, such as neighbourhood maps, photographs, diaries and field notes. Narrative analysis was applied within and across the data-sets. Findings: This led to the emergence of three themes to describe a connected neighbourhood. First, 'connecting to people' is about the couples' connections with family members, friends and neighbours through a sense of belonging, group identification and responsibilities. Second, 'connecting to places' shares the couples' emotional and biographical attachment to places. Third, 'connecting to resources' refers to the couples actively seeking support to live independently and to retain neighbourhood connections.

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Trajectories of family care over the lifecourse: evidence from Canada

Background: In the midst of a 'care crisis', attention has turned again to families who are viewed both as untapped care resources and as disappearing ones. Methods: Within this apparent policy/demographic impasse, we test empirically theorised trajectories of family care, creating evidence of diverse patterns of care across the lifecourse. The study sample, drawn from a Statistics Canada national survey of family care, comprised all Canadians aged 65 and older who had ever provided care (N = 3,299). Results: Latent Profile Analysis yielded five distinct care trajectories: compressed generational, broad generational, intensive parent care, career care and serial care. They differed in age of first care experience, number of care episodes, total years of care and amount of overlap among episodes. Trajectories generally corresponded to previously hypothesised patterns but with additional characteristics that added to our understanding of diversity in lifecourse patterns of care. Conclusion: The five trajectories identified provide the basis for further understanding how time and events unfold in various ways across lifecourses of care. A gap remains in understanding how relationships with family and social network members evolve in the context of care. A challenge is presented to policy makers to temper a 'families by stealth' policy approach with one that supports family carers who are integral to health and social care systems.

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Time Effects of Informal Caregiving on Cognitive Function and Well-Being: Evidence From ELSA

Background and Objectives: As informal caregiving becomes prevalent, its consequences for caregivers' cognitive and socioemotional functioning gain more importance for society. There are inconsistent findings regarding the direction of the impact of caregiving-whether caregiving maintains or compromises functioning-and the impact of time-whether the effects accumulate or are stable. In this study, we elucidated 3 time effects of caregiving-concurrent, cumulative, and lagged effects-on cognitive and socioemotional functioning. Research Design and Methods: We used data from Wave 1 (2002–2003) to Wave 8 (2016–2017) in the English Longitudinal Study of Ageing (ELSA) and latent growth curve models with the time-varying predictor to investigate 3 time effects of caregiving on cognitive function (memory and executive function) and well-being (life satisfaction and quality of life). Results: Over and beyond age effects, current caregiving (concurrent effect) was related to worse well-being and better delayed recall. Little robust cumulative effect was found on cognition and well-being. In addition, there were significant and differential lagged effects of caregiving after controlling for concurrent and cumulative effects; that is, caregiving was related to worse well-being and better memory functioning 2–4 years later. Discussion and Implications: The differential concurrent and lagged effects of caregiving on cognitive and socioemotional functioning suggest separate mechanisms for different domains of functioning. The nonsignificant cumulative effects but significant lagged effects imply that even one-time caregiving has long-term (2–4 years) consequences for the caregiver's future functioning, and the mechanism of long-term caregiving effects may be more qualitative than quantitative.

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The tension between carrying a burden and feeling like a burden: a qualitative study of informal caregivers’ and care recipients’ experiences after patient discharge from hospital

Purpose: The number of people aged 80 and above is projected to triple over the next 30 years. Expanding public expenditure on long-term care services has made policies encouraged informal caregiving. Burden of care describes challenges connected to informal caregiving. Dependent patients report feelings of being a burden. Few studies have focused on both the experience of caregiver burden and recipients’ feelings of burden. This study explore the experiences of old patients and informal caregivers in the first 30 days after the patient’s discharge. Method: A phenomenological approach was used to explore the subjective experiences of the participants. Semi-structured individual interviews were analysed thematically. Results: The reults reflect imbalance regarding care needs relative to time, social roles, physical and emotional states, and formal care resources. Four themes emerged from the interviews: 1) Bridging the gap, 2) Family is family, 3) Never enough, and 4) Stress and distress. Conclusions: The participants face strains within their roles. The care situation has potential to be burdensome. To secure healthcare quality for old patients, the informal carer’s role needs to be recognized. Informal care based on altruism and reciprocity seems to be positive, whereas informal care based on family norms might have a negative impact. 

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Technological Solutions and Informal Care Culture for the Elderly: An Intervention Proposal for Training Actions

Objectives: This article proposes an intervention from the field of social sciences to improve the knowledge of informal caregivers about care for the elderly. Methods: We analyze the social and cultural relationships that support the informal care culture in Spain. Some of the most important factors that are an obstacle to the professionalization of the sector are presented. Findings: The profiles of the informal caregivers are established, highlighting that most of them are women, whether they are family members or not. Furthermore, we find a prominent role of immigrant women in the non-professional care sector. We also analyzed the different relationships that groups related to informal care of the elderly have with technologies, highlighting mobile phones and instant messaging applications. Conclusions: With this result, we proposed the public policies of care for the elderly to contemplate training actions transmitted through the mobile phone and messaging applications.

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Subjective life experiences of family caregivers of dependent older adults

Objectives: This study aimed to understand the subjective meanings attributed to home care by family caregivers of dependent older adults through a multicenter qualitative investigation that gathered 84 in-depth interviews with family caregivers from eight Brazilian locations. Methods: The hermeneutic-dialectic, theoretical, methodological framework was employed. Findings: The following categories emerged from the analysis: 1. Movements inhibiting emotions and feelings; 2. Presence of processes of symbiosis and emotional dependence in the older adult-relative relationship; 3. Contentment in caring for the dependent older adult; and 4. Giving up current and future life projects. The results reveal life experiences marked by symbiotic processes, emotional dependence, and psychic stress. Dependence causes suffering and feelings of despair, powerlessness, impatience, but also solidarity and empathy. Withdrawal from the job market, social depreciation of family caregiver’s activity, social isolation, neglected self-care, and family conflicts impact caregivers’ subjectivity. Conclusions: The elaboration of public policies must consider the social-affective life experiences of family caregivers of dependent older adults in order to include the care of those providing care. 

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Structural equation model of affecting factors on elder abuse to patients under hemodialysis by family caregivers

Background: The objectives of the present study were to determine the prevalence of older adults with hemodialysis (HD) abuse by family caregivers and the factors affecting it. Method: This is a correlational-causal study, which is conducted in 2018 in Iran. The sample size was 367 in both groups (the older adults and their family caregivers). Data collection was done using an individual-social information questionnaire for the older adults under hemodialysis and their family caregivers, the questionnaire of elder abuse by family caregivers to the older people under hemodialysis, Zarit Burden Interview and the scale of instrumental activities of daily living (IADL). Data were analyzed by the structural equation model (SEM) method. The Fitness of proposed pattern was measured using the following indexes: chi-square/degree of freedom ratio (CMIN/DF), Normed Fit Index (NFI), comparative fit index (CFI), goodness of fit index (GFI), and standardized root mean squared residual (SRMR). The significant level in this study was considered p < 0.05. Results: The results of the present study showed that more than 70 % of the older adults suffer from elder abuse by family caregivers on average. The highest median elder abuse was related to emotional misbehavior (21.46 ± 6.09) and financial misbehavior (19.07 ± 5.33), respectively. Moderate care burden was experienced by 63.2 % of caregivers. The percentage of older women and men, who needed help with daily activities was 81.4 and 80.5 %, respectively. The results showed that the caregivers’ level of education and care burden with standard beta coefficient of -0.251 and 0.200 and the educational level of older adults and IADL with the best beta coefficient of -0.299 and − 0.234, had the highest regression effect on elder abuse respectively. According to the results, the model-fit indices of the hypothesized model was meet the criteria, with the NFI = 0.951, GFI = 0.970, CFI = 0.967, and SRMR = 0.041. The outcome was suitable for the recommended level, so the hypothetical model appeared to fit the data. Conclusions: The results of the present study showed that the prevalence of elder abuse by family caregivers among the older adults under hemodialysis is high. Providing psychological counseling can reduce the consequences of elder abuse.

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Strong Carers, Strong Communities: a cluster randomised controlled trial to improve wellbeing of family carers of older people in remote Aboriginal communities

Introduction: Unpaid carers have a crucial role in supporting older people with cognitive impairment and disability, but their own health and wellbeing are often impacted. There are limited data on how carer strain, depression and empowerment may be improved for carers. Methods: This was a cluster randomised controlled trial to compare the effect of a carer support program developed with a community-based participatory action research (PAR) approach to the delivery of information sessions to 100 carers of people aged 45 years or more living in four remote Aboriginal communities in Western Australia. Results: The mean age of carers was 38.3±14.9 years, 76% were female and 77% were children or grandchildren of the care recipient. Carer strain and empowerment measures did not change significantly between baseline and follow-up. A statistically significant decrease in depression scores was observed in the PAR group. However, decreases were observed in both the PAR and control groups, and the change in scores did not differ significantly between groups. Depression scores decreased most in those who had not attended high school. Overall, the proportion of participants meeting criteria for depression decreased from 18.8% at baseline to 8.3% at follow-up. Conclusion: A carer support program was of equivocal benefit, although this research demonstrates that the wellbeing of carers in remote Aboriginal communities can potentially be markedly improved by outreach strategies. 

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Stakeholder Voices: Interpreting Caregiving Research and Designing Next Steps

Background: Stakeholder engagement can enhance interpretation of research findings and promote meaningful dissemination into policy and practice. Methods: Several organizations dedicated to understanding the needs of diverse older adults and family caregivers and advancing practice and policy to improve their health came together in a series of discussions. More than 120 participants, including family/friend caregivers and their advocates and leaders and researchers from public and private organizations, generated an action agenda for those engaged with family caregivers in service delivery, research, and policy across three virtual sessions. Findings: Although there are common experiences and demands for caregivers, the meanings of these experiences are shaped by a cultural context, and the intersectionality of caregiver experiences by age, race/ethnicity, gender identity, sexual orientation, immigrant status, and other factors bring into focus the diversity of life and caregiving experience. Conclusions: This heterogeneity of experience crystalizes the importance of assuring the caregiver is at the center, and that design for programs, research, and policy recognize the importance of understanding caregivers and their unique needs before pre-supposing solutions.

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Societal costs of informal care of community-dwelling frail elderly people

Aims: The aims of this study are to describe informal care activities and to estimate the societal cost of informal care of community-dwelling frail elderly people in Sweden. Methods: This study was performed within the frame of the TREEE project that included 408 frail elderly patients. At index hospitalisation (baseline), primary informal caregivers of the patients were provided with a questionnaire on informal care during a period of three months. Questions concerning other (secondary) informal caregivers were also included. A rough estimate of the total cost of informal care of frail elderly people in Sweden was obtained by combining data from this study with published data and official statistics. Results: In total, 176 informal caregivers responded, and 89% had provided informal care. The informal caregivers (primary and secondary) provided care for an average of 245 hours over three months. Taking care of the home was the dominating activity. In total, the mean cost of informal care was estimated to approximately 18,000 SEK (€1878) over three months, corresponding to an annual cost of approximately 72,000 SEK (€7477) per frail elderly person. The total annual societal costs of informal care of community dwelling frail elderly people aged 75 years and older in Sweden was estimated to be approximately 11,000 million SEK (€1150 million). Conclusions: The care of frail elderly people provided by informal caregivers is extensive and represents a great economic value. Although our calculations are associated with uncertainty, the size indicates that supporting informal caregivers should be a priority for society. 

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The Socialization of Unpaid Family Caregivers: A Scoping Review

Background: As unpaid family caregiving of older adults becomes increasingly prevalent, it is imperative to understand how family caregivers are socialized and how they understand the caregiving role. Methods: This PRISMA-ScR-based scoping review examines the published literature between 1995–2019 on the socialization of potential and current unpaid family caregivers of older adults. Results: Of 4,599 publications identified, 47 were included. Three perspectives of socialization were identified: (1) role acculturation ; (2) role negotiation and identification ; and (3) specialized role learning. The findings show how socialization involves different contexts (e.g., cultures), imperatives for action (e.g., circumstances), socialization agents (e.g., family), processes (e.g., modeling), and internal (e.g., normalization) and external (e.g., identification) consequences for caregivers. Conclusions: Future research could fruitfully explore how caregivers manage key turning points within the socialization process, disengage from the caregiving role, and negotiate the socialization and individualization processes within diverse cultural and funding contexts.

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Social Isolation Among Spousal and Adult-Child Caregivers: Findings From the Canadian Longitudinal Study on Aging

Objectives: The caregiving outcomes of spousal and adult-child caregivers are widely studied since they are the most common source of support provided to adults. However, the literature on social isolation among spousal and adult-child caregivers is very limited. In order to further elaborate and specify unique caregiving outcomes, this study focuses on social isolation, both longitudinally and comparatively between spousal and adult-child caregivers. Methods: This study was based on the Baseline and Follow-up 1 data from the Canadian Longitudinal Study on Aging. A total of 5,226 participants (1,293 spousal caregivers and 3,933 adult-child caregivers) were selected. The Linear mixed models were used to examine the effect of caregiver type and caregiving intensity on social isolation over the course of survey. Results: Spousal and adult-child caregivers reported greater social isolation over time, and spousal caregivers exhibited a steeper increase in social isolation from Baseline to Follow-up 1 than adult-child caregivers. Also, an increase in caregiving hours resulted in greater social isolation. Finally, male spousal or adult-child caregivers were more likely to be socially isolated over time than their female counterparts. Discussion: The findings of this study contribute to the existing literature on caregiving outcomes by demonstrating an association between family caregiving and social isolation. The results indicate a strong need for intervention programs that aim to enhance social connectedness among family caregivers, and especially for those who perform intensive caregiving, are older age, and are from a lower socioeconomic status.

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Smarthealth technology study protocol to improve relationships between older adults with dementia and family caregivers

Aim: The aim of this study is to develop a Smarthealth system of monitoring, modelling, and interactive recommendation solutions (for caregivers) for in‐home dementia patient care that focuses on caregiver–patient relationships. Design: This descriptive study employs a single‐group, non‐randomized trial to examine functionality, effectiveness, feasibility, and acceptability of the novel Smarthealth system. Methods: Thirty persons with Alzheimer's Disease or related dementia and their family caregivers (N = 30 dyads) will receive and install Smarthealth technology in their home. There will be a 1‐month observation phase for collecting baseline mood states and a 2‐month implementation phase when caregivers will receive stress management techniques for each detected, negative mood state. Caregivers will report technique implementation and usefulness, sent via Ecological Momentary Assessment system to the study‐provided smartphone. Caregivers will provide daily, self‐reported mood and health ratings. Instruments measuring caregiver assessment of disruptive behaviours and their effect on caregivers; caregiver depressive symptoms, anxiety and stress; caregiver strain; and family functioning will be completed at baseline and 3 months. The study received funding in 2018 and ethics board approval in 2019. Discussion: This study will develop and test novel in‐home technology to improve family caregiving relationships. Results from this study will help develop and improve the Smarthealth recommendation system and determine its usefulness, feasibility, and acceptability for persons with dementia and their family caregiver.ImpactThe Smarthealth technology discussed will provide in‐home stress reduction resources at a time when older adults may be experiencing increasingly high rates of isolation and anxiety and caregiver dyads may be experiencing high levels of relationship strain. Trial Registration: This study was registered with Clinical Trials.gov (Identifier NCT04536701).

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Sensitizing family caregivers to influence treatment compliance among elderly neglected patients—a 2-year longitudinal study outcome in completely edentulous patients

Background: Healthcare workers have reported a certain segment of geriatric patients that are suffering from abuse/neglect, which in turn has been associated with anxiety, depression, and helplessness in the individual. Family caregivers (blood relations), being the most common perpetrators of elder abuse and neglect (EAN), have also been shown to respond to sensitization if the type of EAN and the interventions are appropriate. Objectives: This study was aimed to comparatively analyze the influence of intervention (psychotherapeutic sensitization of FCG) upon long-term (24 months) treatment maintenance and satisfaction in elderly neglected patients. Methods: One hundred and fifty patients (aged 41–80 years) suffering from elder neglect (EN) (self-confession) and their respective FCGs, fulfilling the study criteria, participated in this longitudinal 2-year study. The patients were randomly dis-tributed (simple random, convenient) in two equal groups (75 each), namely Group (GP) A (control) and GP B (test). A standardized, complete denture treatment was initiated for all the participants. Both the FCGs and the patients of GP B were sensitized (psychotherapeutic education) for EN, while there was no such intervention in GP A. The influence of such intervention was measured for denture maintenance [denture plaque index (DPI) scores] and treatment satisfaction (10-point visual analog scale). Absolute/relative frequencies and means were major calculations during data analysis. Differences between the groups for any treatment compliance parameter was done through the unpaired t-test, while Karl Pearson’s test determined the level of relationship between variables (p-value < 0.05). Results: Decrease in mean DPI scores (suggesting improvement) was seen among patients in GP A from 1 month (m = 2.92) to 24 months (m = 2.77). A negligible increase in DPI scores was observed among patients of GP B from 1 month (m = 1.38) to 24 months (m = 1.44). Differences in mean values between the two groups were statistically significant at 24-month intervals, while the relationship between the variables was nonsignificant. FCG sensitization through psychotherapeutic education shows a long-term positive influence on the treatment compliance (maintenance and satisfaction). Conclusions: Identifying the existence of EAN among geriatric patients, followed by psychothera-peutic education of FCGs is recommended for routine medical and dental long-duration treatment procedures. 

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Self-reported changes in physical activity, sedentary behavior, and screen time among informal caregivers during the COVID-19 pandemic

Background: Informal caregivers providing unpaid assistance may be vulnerable to changes in health behaviors due to modifications in caregiving during the COVID-19 pandemic. Therefore, this cross-sectional study explored self-reported changes in physical activity (PA), sedentary behavior, and screen time among informal caregivers providing care for older adults aged 50+ during the pandemic. Methods: Study participants were recruited via Amazon’s Mechanical Turk and reported their perceived changes (increased a lot, increased a little, remained the same, decreased a little, decreased a lot) in moderate-intensity PA (MPA), vigorous-intensity PA (VPA), sedentary behavior, and screen time (weekday and weekend) during the pandemic. For analytic purposes, response categories were categorized into three-level ordinal variables—increased (increased a lot, increased a little), no change (remained the same), decreased (decreased a little, decreased a lot). Multinomial logistic regression models assessed the likelihood of changes (vs. no change) in MPA, VPA, sedentary behavior, and screen time (weekday, weekend) based on caregiving and demographic characteristics. Results: In total, 2574 individuals accessed the study link, 464 of whom did not meet eligibility requirements. In addition, people who completed 80% or less of the survey (n = 1171) and/or duplicate IP addresse (n = 104) were excluded, resulting in an analytic sample of n = 835. The sample was 69% male, had a mean age of 34 (SD = 9.7), and 48% reported increased VPA, while 55% reported increased MPA. The majority also reported increased sedentary behavior, as well as increased screen time. Respondents living with their care recipient were more likely to report increased weekday screen time (Odds Ratio [OR] = 1.55, 95% CI 1.11–2.16) and sedentary behavior (OR = 1.80, 95% CI 1.28–2.53) than respondents not living with the care recipient. Those living with their care recipient were also more likely to reported increased MPA (OR = 1.64, 95% CI 1.16–2.32), and VPA (OR = 1.53, 95% CI 1.09–2.15), but also more likely to report a decrease in VPA (OR = 1.75, 95% CI 1.14–2.70). Conclusion The majority of respondents reported that their MPA, VPA PA, sedentary behavior, and screen time had changed during the pandemic. Living with the care recipient was associated with both positive and negative changes in behavior. Conclusions: Future research can explore factors associated with these reported changes in behavior.

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Self-Management of Dementia by Family Carers: A Scoping Review

Background: Family carers increasingly take on the responsibility of self-management of dementia as the condition progresses. However, research on this topic is scarce. Objectives: This scoping review aimed to identify the key characteristics related to self-management of dementia by carers including its components, theoretical/conceptual frameworks that underpinned these components and measurements. Methods: A scoping review was conducted in 8 databases and 16 publications met the inclusion criteria. Results: Twenty-two components were identified and grouped into two categories: activities and carer characteristics and skills. The identified theoretical/conceptual frameworks were numerous and varied as were the measures. There was a little consistency of the key characteristics of self-management of dementia by carers. Conclusions: The findings assist carers and healthcare providers to understand the components involved in self-managing dementia which will guide the development and delivery of self-management support interventions for carers. Further research is required to validate these findings and to develop specialized conceptual frameworks and measures. 

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Self‐efficacy of family caregivers of older adults with cognitive impairment: A concept analysis

Background: Research demonstrates that increased self‐efficacy can help family caregivers of older adults with Alzheimer's and other types of cognitive impairment experience lower burden and depressive symptom severity. Aims: The purpose of this concept analysis is to address fundamental gaps in the understanding of self‐efficacy in family caregivers of older adults with cognitive impairment, including updating the 26‐year‐old concept analysis with a contemporary definition. Methods: This study utilizes Walker and Avant's (2019) concept analysis method, an eight‐step iterative process that helps to clarify ambiguous concepts. A literature review was conducted from July 1993 through March 2019 using PubMed/MEDLINE, Scopus, CINAHL, and Embase. Inclusion criteria encompassed peer‐reviewed research articles and review articles that included family caregivers of older adults with cognitive impairment. Results: Eight defining attributes of this concept are identified. The revised definition of self‐efficacy in this population is a family caregiver's confidence in their ability to: manage behaviors and other caregiving stresses, control upsetting thoughts, acquire medical information, manage medical issues, obtain self‐care, access community supports, assist with activities of daily living and other care, and maintain a good relationship with a relative, friend, or neighbor of an older adult with cognitive impairment. Conclusion: This paper utilizes over a quarter‐century of research to build on the original analysis by Mowat and Spence Laschinger (1994) and update the concept's definition. This analysis should provide researchers with a clearer understanding of this concept and a renewed emphasis on the importance of targeting interventions to improve self‐efficacy in this vulnerable caregiving population.

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Rural-Urban Differences in Caregiver Burden Due to the COVID-19 Pandemic among a National Sample of Informal Caregivers

Objectives: The objective of this exploratory study was to explore potential associations between changes to caregiver burden (CB) due to the COVID-19 pandemic and rural-urban status using a nationally representative sample of 761 informal caregivers. Methods: Tertiles of two measures of rural-urban status were used: Rural-Urban Commuting Areas (RUCAs) and population density. Bivariate and multivariable binary and ordinal logistic regression were used to asses study objectives. Results: Using RUCAs, rural informal caregivers were more than twice as likely as urban informal caregivers to report a substantial increase in CB due to COVID-19 (OR 2.27, 95% CI [1.28–4.02]). Similar results were observed for population density tertiles (OR 2.20, 95% CI [1.22–3.96]). Having a COVID-19 diagnosis was also significantly associated with increased CB. Conclusions: Understanding and addressing the root causes of rural-urban disparities in CB among informal caregivers is critical to improving caregiver health and maintaining this critical component of the healthcare system. 

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Resilience, Emotional Intelligence, and Occupational Performance in Family Members Who Are the Caretakers of Patients with Dementia in Spain: A Cross-Sectional, Analytical, and Descriptive Study

Background: The concern in the scientific community for the study of people with dementia and their families is comprehensible, especially the importance of knowing the effects that caring for the patient has on their family dynamic, paying special attention to the main caregiver. The objective of this study was to analyze the relationship of resilience and emotional intelligence with functional performance in the main caregivers of people with dementia in Spain according to the phase of the disease. Methods: A cross-sectional, descriptive, and analytical study was carried out. A total of 144 primary family caregivers of patients with dementia in Spain were included in the study. The following variables were measured: sociodemographic, psychosocial, and occupational, as well as resilience and emotional intelligence. Results: The caregivers obtained a low moderate resilience (mean = 64.01 ± 14.5), an emotional intelligence bordering between moderate and high (mean = 78.48 ± 14.82), and a 61.8% self-care categorized as somewhat and quite a bit. The presence of higher levels of resilience in family caregivers of people with dementia were positively related to the time spent on self-care (r = 0.227; p = 0.033) and leisure (r = 0.262; p = 0.014), especially in the moderate phase of the disease, while in the severe phase, this relationship appeared with productivity (r = 0.355; p = 0.034). The higher levels of emotional intelligence were positively related to a greater time dedicated to self-care (r = 0.233, p = 0.005), as well as the data observed in the moderate and severe phase (r = 0.214; p = 0.046 and r = 0.398; p = 0.016 respectively). Conclusions: The primary caregivers of relatives with dementia who have higher levels of resilience and emotional intelligence spend more time on self-care and leisure activities, especially in the moderate phase of the disease.

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Replicating an effective VA program to train and support family caregivers: a hybrid type III effectiveness-implementation design

Background: Caring for a growing aging population using existing long-term care resources while simultaneously supporting and educating family caregivers, is a public health challenge. We describe the application of the Replicating Effective Programs (REP) framework, developed by the Centers for Disease Control Prevention and used in public health program implementation, to scale up an evidence-based family caregiver training intervention in the Veterans Affairs (VA) healthcare system. Methods: From 2018 to 2020, clinicians at eight VA medical centers received REP-guided implementation including facilitation, technical assistance, and implementation tools to deliver the training program. The project team used the REP framework to develop activities across four distinct phases – (1) pre-conditions, (2) pre-implementation, (3) implementation, and (4) maintenance and evolution – and systematically tracked implementation facilitators, barriers, and adaptations. Results: Within the REP framework, results describe how each medical center adapted implementation approaches to fit local needs. We highlight examples of how sites balanced adaptations and intervention fidelity. Conclusions: The REP framework shows promise for national expansion of the caregiver training intervention, including to non-VA systems of care, because it allows sites to adapt while maintaining intervention fidelity. Trial registration NCT03474380. Date registered: March 22, 2018.

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Relieving distressed caregivers (ReDiCare study): study protocol of a randomized pragmatic trial

Background: Providing care for someone with a disease or chronic condition can have a negative psychological, physical, social, and economic impact upon informal caregivers. Despite the socio-economic relevance and more than three decades of caregiver intervention research only very few translational efforts of successful interventions are reported. Still less of these interventions have been implemented into routine services. Objectives: The aim of the ReDiCare study (German acronym BerTA) is to evaluate the effectiveness of a stepped counselling approach for burdened caregivers delivered by care counsellors of two long-term care insurances and registered psychotherapists. Methods/design: A pragmatic randomised controlled trial with 572 caregivers of older adults (≥ 60 years) receiving benefits of one of the two participating long-term care insurances. Participants are assigned (t0) to either the ReDiCare intervention or a control group receiving routine care and counselling. Data are collected at baseline (-t1), 3-month (t1), 9-month (t2) and 15-month (t3). The 9-month post-intervention assessment (t2) is the primary endpoint to evaluate the results on the primary and secondary outcomes, measured by self-reported questionnaires. Depressive symptoms measured with the CES-D are the primary outcome. The main secondary outcomes are physical complaints, utilization of psychosocial resources, caregiver self-efficacy and burden, positive aspects of caregiving and perceived care quality. A process evaluation, including audio tapes, self-report questionnaires and documentation will be conducted to examine internal and external validity of the intervention. Data on direct and indirect costs are collected for the (health) economic evaluation, using a health care perspective and a societal perspective. Discussion: While comparable previous caregiver interventions have been developed and evaluated for specific caregiver groups (e.g. dementia caregivers, stroke caregivers), the ReDiCare study will indicate whether a stepped approach will be effective also in a broader group of caregivers. The intervention is one of the very few translational studies in caregiver intervention research and will provide valuable insights into relevant factors for training, intervention protocol adherence, effectiveness, and costs for future implementation steps. Trial registration Deutsches Register Klinischer Studien (German Clinical Trials Register), DRKS00014593 (www.drks.de, registered 14 May 2018) and International Clinical Trials Registry Platform, DRKS00014593 (https://apps.who.int/trialsearch/).

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Relationship-centred CogniCare: an academic–digital–dementia care experts interface

Purpose: This paper aims to reports on an academic–industry service development innovation to advance the symptom monitor and track feature within the CogniCare app to support family carers of people living with dementia. Expert opinion from dementia care professionals identified key monitoring strategies for enhanced carer competence and confidence in the early identification of relevant symptoms that would help facilitate meaningful hospital/social care consultations. Design/methodology/approach: A co-production approach between industry and academia included stakeholder representation from NHS Highland and Alzheimer Scotland. Dementia care experts validated items to be included for symptom monitoring and tracking using a newly developed A2BC2D2EF2 framework as part of this project and recommended additional strategies for monitoring symptom change, including carer well-being. Findings: Dementia care experts perceived the symptom monitoring and track feature to have the potential to support family carers with dementia care at home and foster a relationship-centred approach to dementia care to facilitate meaningful hospital/social care consultations. Originality/value: The CogniCare app is the first platform of its kind that aims to support family carers to care for people living with dementia at home. This unique service development collaborative combined dementia and digital expertise to create innovative digital solutions for dementia care. The proposed monitoring and tracking feature is perceived by dementia care experts as a tool with the potential to enhance carer confidence and thus enable safe and effective dementia care within the home environment.

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Reciprocity between older adults and their care-givers in emigrant households of Kerala, India

Background: The felt obligation to return a benefit, termed reciprocity, has been identified as motivating care exchanges between older adults and their younger family members. Within the context of large-scale emigration of young adults from the Indian state of Kerala, this study examines how left-behind older adults and their family care-givers recognise, interpret and give meaning to reciprocal exchanges, expectations and obligations in their care relationship. Methods: Employing a social exchange perspective, we qualitatively explore the norm of reciprocity through in-depth interviews of 48 participants (older adults and their care-givers) from emigrant households. Findings: Older adults and their care-givers identified reciprocal notions in their care exchange relationship that provided an interpretive framework for describing expectations, motivations, obligations and experiences across care-giving relationships. Spousal care-givers derived reciprocal motives and mutual care obligations through the institution of marriage. Adult children recognised filial duties and responsibilities and were in principle prepared to provide care to their parents. Reciprocating the support received and the likelihood of intergenerational transfers motivated care exchanges from adult children to their older parents. Daughters-in-law executed transferred filial roles from their emigrant husbands and bore a larger burden of care. Primary adult care-givers relied on the 'demonstration effect', hoping that children observe the care-giving process and emulate it later. Conclusions: Imbalances and non-reciprocity in the care exchange led to frustrations and threatened the care relationships.

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Rapid development of a decision-aid for people with dementia and their families during COVID-19

Introduction: COVID-19 as a pandemic has disproportionately affected older adults, including those with dementia. The effects on health and social care systems has necessitated a rapid-response approach to care planning and decision-making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. In light of this, a decision-making tool to help families of persons with dementia was developed using a combination of qualitative data and evidence synthesis. Objectives: To develop a decision-aid using a combination of assessment and evidence-gathering methods for families of persons with dementia.MethodsSemi-structured interviews with helpline staff from national end-of-life and supportive care organisations formed the basis of the tool design. Co-design with people living with dementia, current and former carers and experts in general practice and social care shaped the next stage. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken. Results: Output from interviews covered many topics, including trust, agency and confusion in making decisions in the context of COVID-19. The rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision-making. Conclusions: Combining different sources and forms of evidence was efficient and valuable in creating a novel decision-making tool for persons with dementia and their families within the context of COVID-19. The decision-aid covered care planning, caregiver support systems, access to information and contingency considerations. Upon publication, the tool was adopted by NHS England and other leading healthcare organisations.

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Race and Gender Differences in Perceived Caregiver Availability for Community-Dwelling Middle-Aged and Older Adults

Purpose: Informal family caregivers are increasingly recognized as critical for meeting the needs of individuals with chronic diseases associated with aging. This study examined race and gender differences in perceived informal caregiver availability for participants aged 45 and older in a large national epidemiological study. Design and Methods: Cross-sectional data were collected in structured telephone interviews from 32,999 participants from the REasons for Geographic and Racial Differences in Stroke (REGARDS) study. Participants were asked if they believed that someone was available to provide care for them in the event of a serious illness or disability and, if so, to describe that person. Results: More than 80% of the participants reported having an available caregiver. Variables associated with lower perceived caregiver availability from a multivariable logistic regression analysis included being female, White, or unmarried; living alone; being older than 85; and having worse self-rated health. Spouses were the most likely caregivers for all racial and gender groups except for African American women, who identified daughters as the most likely caregivers. African American women also showed the smallest differential in perceived caregiver availability between married and unmarried (82.8% vs 75.7%), whereas White men showed the largest differential (90.9% vs 60.4%). Implications: Most individuals believe they have an informal caregiver available to them, but certain factors increase the risk of reporting no available caregiver. Increased efforts are needed to anticipate future caregiving needs, particularly for individuals who perceive a lack of available informal caregivers and may require more formal care services. 

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A Qualitative Study of Older Patients' and Family Caregivers' Perspectives of Transitional Care From Hospital to Home

Background and Purpose: The need for high-quality long-term healthcare services is increasing across the globe as the population ages. Strategies for improving transitional care from hospital to home are needed. This study aimed to explore the perspectives of patients aged 65 years and over and their family caregivers transitioning from hospital to home in an urban area of Turkey. Methods: Thematic analysis of in-depth semi-structured interviews was conducted with older patients (n = 14), with at least one chronic disease and admitted to the hospital for a minimum of 3 days, and family caregivers (n = 11) who voluntarily participated. Results: Main themes were "confused feelings of safety and stress"; "worried about being left alone"; and "disrupted healthcare journey." The proactive rehabilitation model was used to elaborate on the study findings and interpret the perspectives and experiences of older patients and their family caregivers, which can be used for improving the quality of care after discharge from hospital. Implications for Practice: A high-quality transitional care program requires taking care of the feeling of safety in older patients and their family caregivers by the multidisciplinary team and their enhanced involvement in care initiatives after hospital discharge.

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Qualitative research of informal caregivers’ personal experiences caring for older adults with dementia in Lithuania

Background: In many communities around the world, informal caregivers of older adults with dementia represent an essential, yet often underappreciated, source of long-term care. The present study aimed to determine the personal experiences of such caregivers, which could be instrumental for developing means of improving the quality of care for both care receivers and their informal caregivers. Methods: Five semi-structured focus-group discussions were held. The participants (n = 31) were all informal caregivers of older adults with dementia. The focus-group discussions were audio-recorded and transcribed verbatim. An inductive approach was used, and thematic data analysis was applied. Results: Four thematic categories were identified: learning caregiving through personal experience; implications of caregiving on social wellbeing; caregivers’ contradictory emotions regarding care delivery; and addressing challenges regarding care provision. Conclusions: This study revealed, among the informal caregivers, a variety of experiences, contradicting feelings, and problem-solving strategies relating to the care of older adults with mental disorders. Becoming an effective caregiver involves professional and psychological development. Developing caregiving skills, supportive environment and positive attitude can help facilitate providing care. Caregiving largely impacts the emotional, physical, and social wellbeing of the person; thus, comprehensive approaches are needed to prevent burnout and associated social disadvantages.

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Psychoeducational Program for the Family Member Caregivers of People with Dementia to Reduce Perceived Burden and Increase Patient's Quality of Life: A Randomized Controlled Trial

Background: Dementia is one of the world's greatest public health issues. Most people with dementia receive home care, and family members are vulnerable to feeling burdened and depressed that reinforces the need for caregiver-driven services to mitigate these negative effects. Objective: The purpose of this research was to evaluate the effect of the psychoeducational program on burden and quality of life of family caregivers for people with dementia. Methods: This randomized controlled trial (RCT) was conducted on 60 family caregivers. Participants were randomly assigned to receive either the 8-session psychoeducational program (study group) or routine care only (control group). The demographic data of the caregivers and their patients, the burden of caregivers using Zarit Burden Interview (ZBI), and the quality of life of the patients using Quality of Life in Alzheimer Disease (QoL-AD) questionnaire were measured before and after the psychoeducational program and compared between the study group and the control group. Results: The results revealed that 80% of the family caregivers were female and 42% were daughters. The mean ± SD of the baseline burden was 61 ± 13.7 and 60.9 ± 10 in the study and the control group, respectively. ZBI burden score in the study group demonstrated a significant drop after the psychoeducational program compared to the control group. Logistic regression analysis showed that caregivers who received the psychoeducational program have OR (95% CI) of 14 (3.1-67.8) compared to those who did not receive the psychoeducational program. Conclusions: Psychoeducational program is effective in reducing the family caregivers' perceived burden. These findings need to be considered in developing comprehensive dementia care programs to well increase the strategies that help caregivers to deal with their patients.

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Profile and needs of primary informal caregivers of older patients in Belgian geriatric day hospitals: a multicentric cross-sectional study

Background: With the improvement of life expectancy, the world faces increasing demands for care of older persons. In this manuscript, we define the characteristics of primary informal caregivers (PIC) of patients aged 75 years and older admitted to geriatric day hospitals (GDH) in Belgium. A PIC is defined as the person who most often provides care and assistance to persons who need to be cared for. We describe PIC socio-demographic characteristics, satisfaction, burden and wishes about caring; the type of assistance provided and received, their self-rated health, socio-demographic and medical characteristics of proxies, in particular the presence of behavioural disorders. Methods: We conducted a cross-sectional study in 25 GDH. Participants Four hundred seventy-five PIC of patients ≥75 years and their proxies. PIC completed a questionnaire at the GDH assessing burden by Zarit Burden Index-12 (ZBI-12), self-rated health, social restriction due to caregiving and financial participation. We compared the characteristics of PIC with high and low burden, and the characteristics of spouses and adult children PIC. We also analyzed factors associated with a high burden in a multivariable logistic regression model. Results: PIC were mainly women (72%), adult children (53.8%) and spouses (30.6%). The mean age was 64 ± 14 years for PIC and 84 ± 5 years for care recipients. PIC helped for most of Activities in Daily Living (ADL) and Instrumental ADL (iADL). The median ZBI-12 score was 10 [IQR 5–18]. In multivariable regression analysis, a high burden was positively associated in the total group with living with the relative (p = 0.045), the difficulty to take leisure time or vacation (p < 0.001), behavioral and mood disorders (p < 0.001;p = 0.005), and was negatively associated with bathing the relative (p = 0.017) and a better subjective health status estimation (p < 0.001). Conclusion: Primary informal caregivers, who were predominantly women, were involved in care for ADL and iADL. A high burden was associated with living with the relative, the difficulty to take leisure time or vacation and the relative’s behavioral and mood disorders. Bathing the relative and a subjective health status estimated as good as or better than people the same age, were protective factors against a high burden.

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Prioritizing Family Caregiving Research Across Diverse Settings to Support Our Aging Society

An editorial is presented on the Prioritizing Family Caregiving Research Across Diverse Settings to Support Aging Society. The article discusses that this has become abundantly clear during the evolving COVID-19 pandemic as family caregivers took on increasing responsibility for care amid the most challenging of circumstances; and research must not only continue but must also grow to better demonstrate how we can effectively support caregivers.

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Preparedness for the death of an elderly family member: A possible protective factor for pre-loss grief in informal caregivers

Background: Pre-loss grief (PLG) has been identified as a robust risk factor for Prolonged Grief Disorder, which will be added to the DSM 5-TR. Therefore, identifying treatment targets to reduce PLG is warranted. "Preparedness" has been found to strongly predict PLG. The work is nascent and a consensus has not been reached about how best to assess for preparedness, and no reliable measure of this construct exists. Before examining the relationship between preparedness and PLG, an in depth understanding of how family members define preparedness is warranted. The purpose of this study was to develop a preliminary theoretical framework of preparedness for the loss. Methods: This was achieved through prospective semi-structured interviews with family members of Stage 4 Cancer (N = 16) and Advanced Dementia (N = 24) patients. Findings: The overarching theme related to preparedness for the loss was the need to reduce uncertainty, both before the person passes away (i.e., present certainty) and after the person passes away (i.e., future certainty). Factors associated with the need to establish certainty in the present included, religiosity and spirituality, good relationship quality with the person with the life limiting illness, having access to support, good communication with person with life limiting illness, and acceptance of the impending death. Certainty for the future included, knowing what to expect due to past experience of loss, having plans for life without the person, and social support. Conclusions: This study provides a preliminary framework of preparedness for family members of individuals with life limiting illness.

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Predictors of Family Caregiver Burden in Shanghai

Background: This study explored predictors of family caregiver burden against the backdrop of the rapidly aging population and gradually weakening family care in urban China. Methods: It used a unique sample from the 2017 survey on older adults with functional disability and their family caregivers in Shanghai, China. A multi-pronged approach and ordinary least squares (OLS) regression were employed to identify predictors of family caregiver burden. Results: Statistical analysis revealed that approximately 25% of caregivers felt stressed. Many independent variables related to caregivers, care recipients, their relationship, and social support had statistically significant impacts on caregiver burden. This study also found that caregiver educational level, caregiver family economic status, and the number of other caregivers had significant moderating effects on the correlation between older people's ability to perform activities of daily living (ADL) and family caregiver burden. Conclusions: Policy implications derived from those findings were also discussed.

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Predictors of Caregiver Burden in Delirium: Patient and Caregiver Factors

Background: The current study examined the association of patient factors, patient/caregiver relationships, and living arrangements with caregiver burden due to delirium. Methods: The sample included a subset (N = 207) of hospitalized medical and surgical patients (aged >70 years) enrolled in the Better Assessment of Illness Study and their care-givers. Results: The majority of caregivers were female (57%) and married (43%), and 47% reported living with the patient. Delirium occurred in 22% of the sample, and delirium severity, pre-existing cognitive impairment, and impairment of any activities of daily living (ADL) were associated with higher caregiver burden. However, only the ADL impairment of needing assistance with transfers was independently significantly associated with higher burden (p < 0.01). Child, child-in-law, and other relatives living with or apart from the patient reported significantly higher caregiver burden compared to spouse/partners (p < 0.01), indicating caregiver relationship and living arrangement are associated with burden. Conclusions: Future studies should examine additional factors contributing to delirium burden.

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Predictors of caregiver burden in aged caregivers of demented older patients

Background: Dementia in the oldest-old is projected to increase exponentially as is the burden of their caregivers who may experience unique challenges and suffering. Thus, we aim to investigate which factors are associated with older caregivers’ burden in caring demented outpatients in a multicenter cohort. Methods: Patients and their caregivers, both aged ≧65 years, in the National Dementia Registry Study in Taiwan (T-NDRS) were included in this study. Caregiver burden was measured with the short version of the Zarit Burden Interview (ZBI). The correlations between the ZBI scores and characteristics of caregivers and patients, including severity of dementia, physical comorbidities, instrumental activities of daily living (IADL), neuropsychiatric symptoms assessed by the Neuropsychiatric Inventory (NPI), and family monthly income, were analyzed. Results: We recruited 328 aged informal caregiver-patient dyads. The mean age of caregivers was 73.7 ± 7.0 years, with female predominance (66.8%), and the mean age of patients was 78.8 ± 6.9 years, with male predominance (61.0%). Multivariable linear regression showed that IADLs (β = 0.83, p < 0.001) and NPI subscores of apathy (β = 3.83, p < 0.001)and irritability (β = 4.25, p < 0.001) were positively associated with ZBI scores. The highest family monthly income (β = − 10.92, p = 0.001) and caregiver age (β = − 0.41, p = 0.001) were negatively correlated with ZBI scores. Conclusions: Older caregivers of older demented patients experience a higher care burden when patients had greater impaired functional autonomy and the presence of NPI symptoms of apathy and irritability. Our findings provide the direction to identify risky older caregivers, and we should pay more attention to and provide support for these exhausted caregivers.

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Positive Aspects of Family Caregiving for Older Adults at End-of-Life: A Qualitative Examination

Background: Family caregivers of older adults with dementia have significant challenges across many domains. While this role has been found to be burdensome on the caregiver, increasingly, though, there are also significant positive aspects reported by caregivers (known as the positive aspects of caregiving—PAC). Methods: This participatory qualitative study of 30 United States caregivers of family members age 65 and older who died with a dementia-related diagnoses used in-depth qualitative interviews and directed content analysis to understand the data. The study addressed a gap in the research literature and asked about caregiver's positive experiences during their family members' last weeks of life and investigated what this meant for the caregiver. Findings: Three primary themes were identified: (1) The Importance and Impact of Family Traditions/Celebrations, (2) Use of Humor in Living and the Difficult Experiences at End-of-Life, and (3) "The Gift of Caregiving." Conclusions: These findings are explored and reviewed in light of other research looking at the positive aspects of caregiving for caregivers taking care of persons living with dementia, finding concurrence and some uniqueness across the results. Implications of the findings for families and social work professionals are reviewed.

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Pilot test of a learned resourcefulness program for older family caregivers in Taiwan

Background: Learned resourcefulness, a theory-based education intervention, can be applied to provide strategies to improve the health status and reduce caregiver burden for older family caregivers. Methods: We developed a culturally relevant SOURCE program and designed a pilot study to its effect and feasibility for older family caregivers living in Taiwan. Using a quasi-experimental study with one-group, pre-test and post-test design, we recruited a convenience sample of 30 older family caregivers who received home-care services from a regional hospital in southern Taiwan. The older family caregivers participated in and completed the four-week SOURCE program. Effectiveness and feasibility data were collected after the completion of the program. Findings: Results indicated that the SOURCE program significantly improved caregiving burden (t = 3.05, p = .005) and revealed that the program was helpful and useful to older family caregivers. The next step will be to use the SOURCE program with more older family caregivers. 

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Physical restraint in elderly in home care: a cross-sectional study

Objective: To estimate the prevalence of mechanical restraint and factors associated with its practice in elderly in Home Care. Methods: This was a cross-sectional study with 162 elderly randomly assigned to a home care program in Rio de Janeiro, from March 2018 to July 2018. Used as a technique for data collection and direct observation and structured interview of elderly clinical data. Data were analyzed descriptively and inferentially. Results: There was a 13% prevalence of mechanical restraint in elderly in home care. The most frequent restraints were the use of bandage, tissues and sheets in the arms/legs and chests of the elderly, and the justification for their use were control of aggressive behavior (28.6%), prevention of falls (19%) and protection (19%). Of the total elderly participants, 42.9% remained contained for more than 24 hours, and in 85.7% of the cases, the individuals were confined to a room. Conclusion: It is necessary to expand the training of formal and informal caregivers, recommending the rehabilitation of care practices that preserve the elderly's autonomy, giving them dignity, respecting gerontological and home care principles.

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Person‐Centred Care for older people: Convergence and assessment of users' relatives' and staff's perspectives

Aim: Develop two psychometrically sound questionnaires to assess users' and relatives' opinions of Person‐Centred Care. Evaluate the convergence between the perspectives of the different agents involved in Person‐Centred Care in the older people: Users, relatives and staff. Examine the relationships between Person‐Centred Care and care quality and the users' perceived psychological well‐being. Design: We used the psychometric technology involved in the development and analysis of tests for the first objective. For the second and third objectives, we used a descriptive‐correlational design. Method: The sample comprised 636 clients of older people care residences, 742 relatives and 844 healthcare professionals. The mean age of the centre residents was 81.62 years old (SD = 9.51), the mean age of relatives was 56.7 (SD = 10.15) and the mean age of healthcare professionals was 39.94 (SD = 10.56). Data collection lasted 10 months, between May 2017 and March 2018. Two new Person‐Centred Care instruments were developed and the correlations between different agents were calculated. Results: The newly developed measurement instruments demonstrated a unidimensional structure and high internal consistency and stability over time (users: α =.96, ω =.96, r =.91; relatives: α =.97, ω =.97, r =.95). There was high convergence between the Person‐Centred Care evaluations from the staff, users and relatives, with correlations ranging between.62 and.76. Conclusion: The new measurement instruments were reliable and valid. The opinions of the staff, users and relatives about Person‐Centred Care in the residential centres were in good agreement. Furthermore, Person‐Centred Care was associated with care quality and residents' psychological well‐being. Impact: A gap in the literature is an examination of the extent to which assessments of Person‐Centred Care made by staff agree with those by users of the services and their relatives. In order to do that, two new measuring instruments were developed, which showed excellent psychometric properties, and are able to reliably, validly evaluate Person‐Centred Care.

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Pain in persons with dementia and the direct and indirect impacts on caregiver burden

Background: Unresolved pain is related to neuropsychiatric symptoms (NPS) in persons living with dementia (PLWD), and an increase in NPS is distressing for PLWD and their caregivers. Hence, we examined whether pain in PLWD was related to caregiver burden and whether caregiver upset with NPS mediated this relationship. Methods: We examined, cross-sectionally, the relationships among pain in PLWD, caregiver burden, and upset with NPS. Data from 272 PLWD and their caregivers who participated in the Advancing Caregiver Training (ACT) trial were analyzed using structural equation modeling (SEM). Results: Model fit was satisfactory, and caregiver upset with NPS fully mediated the association between pain in PLWD and caregiver burden. Caregiver upset with NPS helps explain the relationship between pain in PLWD and burden in their caregivers. Pain and NPS are amenable to modification, as is caregiver burden, suggesting great opportunity to impact the lives of PLWD and their caregivers.

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The role of family confidants and caregivers in the care of older cancer patients: Extending the concept of “shared decision‐making”

Background and aims: Family caregivers play an important role in assisting their family members with cancer, but their influence on the treatment decision‐making process has not yet been adequately investigated. This exploratory study approached this topic via reconstructive methodology, focusing on assessing patient‐caregiver relationships. Methods: We conducted semi‐structured interviews with 37 mostly elderly cancer patients (median age: 74 years) about the context of their diagnosis, treatment decision, and family support. Additionally, we interviewed 34 caregivers of cancer patients. Of these, 25 were related to patients interviewed. We analyzed the interviews via a multi‐step coding method informed by Grounded Theory methodology toward characterizing patient‐caregiver relationships, the treatment decision‐making process, and the caregivers' role therein. Results: In the majority of cases (86%), patients were being supported by caregivers. We categorized patient‐caregiver relationships in regards to the caregivers' involvement in the therapy decision‐making process. We found patient‐caregiver interaction patterns that indicate the potential of caregivers to decidedly influence the therapy decision‐making process. Yet, only in 38% of cases, a caregiver attended relevant patient‐physician‐consultations. Conclusion: Depending on the nature of the patient‐caregiver relationship, the traditional concept of shared decision‐making, which assumes a dyadic relationship, needs to be extended toward a more dynamic concept in which caregivers should be involved more frequently. This could enable physicians to better understand a patient's reasons for or against a therapy proposal and ensure that the patient's wishes are communicated and considered. On the other hand, strong caregiver‐involvement bears risks of over‐stepping elderly patients' wishes, thus violating patient autonomy.

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The place of family caregivers for older adults with Alzheimer’s disease: a literature review in Brazil and the United States

Background: This is a review of the literature on family caregivers of patients with Alzheimer’s disease from 2013 to 2017 available in the BVS, Scopus, and PubMed databases. Methods: The descriptors used (translated from Portuguese) were Alzheimer’s disease, caregivers, elderly health, by combination. Findings: Of the 163 papers analyzed, after applying the relevance test, we selected 26 papers presented from five thematic units: 1- Literature reviews; 2- Prevalence profiles of AD caregivers; 3- Qualitative research that analyzes the feelings and sufferings of caregivers; 4- Comparative studies and objective tests; 5- Evaluation studies of intervention programs. The comprehensive and comparative analysis of the investigations highlighted differences and similarities, advantages, and disadvantages of the samples and methodologies adopted in Brazil and the US. The articles analyzed factors that influence family caregivers’ impact with Alzheimer’s disease, identifying the affective bonds involved, the expected reciprocity, the physical, emotional, and social costs associated with a prolonged chronic illness and requiring increasingly complex care. Conclusions: Family caregivers and older adults with AD require a broad, accessible, or articulated support network inside and outside the family.

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The Patterns of Caregiving Activities for Family Caregivers of Older Adults in Hong Kong: An Exploratory Latent Class Analysis

Objectives: This study identified the classes (i.e. patterns) of caregivers' activities, based on their engagements in caregiving activities, and explored the characteristics and the caregiver burden of these classes. Methods: This study was a secondary analysis of a cross-sectional survey on the profiles of family caregivers of older adults in Hong Kong. A latent class analysis approach was adopted to classify family caregivers (N = 932) according to their routine involvements in 17 daily caregiving activities: 6 activities of daily living (ADLs) and 8 instrumental activities of daily living activities (IADLs) in addition to emotional support, decision making, and financial support. Multinomial logistic regression and multiple linear regression illuminated the characteristics of the classes and compared their levels of caregiver burden. Results: The family caregivers fell into 5 classes: All-Round Care (High Demand, 19.5%), All-Round Care (Moderate Demand, 8.2%), Predominant IADLs Care (High Demand, 23.8%), Predominant IADLs Care (Moderate Demand, 32.5%), and Minimal ADLs and IADLs Care (Low Demand, 16.0%). These classes exhibited different characteristics in terms of care recipients' cognitive statuses and caregiver backgrounds. The levels of caregiver burden differed across classes; the All-Round Care (High Demand) class experienced the highest levels of caregiver burden. Discussion: This study contributes to existing scholarship by turning away from a predefined category of care tasks to explore the patterns of caregiving activities. By identifying caregiving activity patterns and understanding their associated characteristics and caregiver burden, prioritizing and targeting caregiver support interventions better is possible.

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Optimizing the Care of Older Canadians with Cancer and their Families: A Statement Articulating the Position and Contribution of Canadian Oncology Nurses

Position Summary

  • The aging population presents a new reality for Canadian oncology nursing care. The variation and potential complexity of the needs of older adults with cancer and their families1 requires integrative, comprehensive, and tailored approaches to care.
  • Canadian oncology nurses envision quality care for older adults with cancer and their families that honors strengths, promotes accessibility of care and optimal communication (in-person and virtually), supports treatment decision making processes, proactively assesses and addresses age-related concerns, involves effective interprofessional and interdisciplinary teamwork, and ensures active collaboration among community and cancer care providers.
  • Oncology nursing practice is key to this quality care. Canadian oncology nurses notice patient and family concerns; advocate for the patient and family within and beyond health care teams; and act to optimize care by managing age-related needs, facilitating referrals, and coordinating care.
  • To contribute fully to quality of care for older adults with cancer, Canadian oncology nurses require support and resources in clinical practice, leadership, education, policy, and research.
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The Online Life Story Book: A randomized controlled trial on the effects of a digital reminiscence intervention for people with (very) mild dementia and their informal caregivers

Background: This paper describes a randomized controlled trial on the Online Life Story Book (OLSB), a digital reminiscence intervention for people with (very) mild dementia living at home. Objectives: The aim of the study was to investigate the effectiveness of the OLSB on (i) neuropsychiatric symptoms (NPS) in persons with dementia and (ii) the distress and quality of life (QOL) of primary informal caregivers. Methods: A randomized controlled trial with individual randomization to one of two conditions was conducted: 1) intervention “Online Life Story Book”; 2) wait list control condition. In the intervention OLSB, a trained volunteer guided the participants through the process of creating an OLSB in approximately 5 meetings within a period of 8–10 weeks. Participants in the control condition received care as usual while they waited for 6 months before starting. Outcomes on NPS and distress and QOL of the informal caregiver were assessed at baseline (baseline, T0), 3 months (T1) and 6 months (T2) post baseline. Results: Of the 42 persons with dementia, 23 were female and 19 were male. They had a mean age of 80 years, ranging from 49 to 95. The total drop-out rate was 14.3 percent. Small but insignificant effects on NPS, caregiver distress and QOL of caregivers were found with the exception of self-rated caregiver distress that reduced significantly during the intervention. One reason to explain the results might be that the included participants were in relatively good health. Practical challenges during the intervention could have affected the results as well. It might also be that the intervention caused effects on other outcomes than NPS and caregiver distress. Conclusions: In future research, it is important to study the effects in persons with more complaints and higher distress and to be careful in the selection of outcome variables in relation to the reminiscence functions served by the intervention.

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Online health communities, contributions to caregivers and resilience of older adults

Objectives: The aim of this paper is twofold. Firstly, to investigate the potential benefits of online health communities (OHCs) for informal caregivers by conducting a systematic literature review. Secondly, to identify the relationship between the potential benefits of OHCs and resilience factors of older adults. Methods & Findings: Performing a thematic analysis, we identified the potential benefits of OHCs for informal caregivers of older adults, including two salient themes: (a) caregivers sharing and receiving social support and (b) self and moral empowerment of caregivers. Then, we uncovered how these potential benefits can support resilience of older adults. Our findings show that sharing and receiving of social support by informal caregivers, and self and moral empowerment of informal caregivers in OHCs, can support four resilience factors among older adults, including self‐care, independence, altruism and external connections. Conclusions: This review enables a better understanding of OHCs and Gerontology, and our outcomes also challenge the way healthcare and aged‐care service providers view caregivers and older adults. Furthermore, the identified gap and opportunities would provide avenues for further research in OHCs.

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Older ill persons' and their adult children's experiences with primary healthcare: A reflective lifeworld research approach

Background: Aging in place puts ill and frail older persons in a vulnerable situation, and relatives, especially adult children, are expected to assume caring responsibilities. Healthcare professionals, like homecare nurses, play a key role in providing care to older persons needing support to live at home. However, the quality of primary home care has been questioned. Objectives: The aim of this study was to describe older persons living at home and their adult children's lived experiences with caring responsibility assumed by healthcare professionals. Methods: We used a reflective lifeworld research approach and analyzed 23 interviews and eight diaries. The COREQ checklist was followed. Findings: The findings revealed that caring responsibility is tantamount to being professionally competent and balancing immanent power to either promote or inhibit important areas of the older persons' and their adult children's lifeworld. Blurred lines of caring responsibility between the participants, the healthcare professionals, and the healthcare systems occurred and indicated that there were errors of commission and omission regarding the safety of older persons in their own homes.

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Older Caregivers With HIV: An Unrecognized Gap in the Literature

Background: Although the number of older people living with HIV (PLWH) is growing, prior research has focused on older PLWH as care recipients and psychosocial factors (e.g., stigma, social support) associated with their HIV care. Literature on HIV caregiving mainly focuses on family members providing care to PLWH or children of parents with HIV. There is a gap in the literature in terms of older PLWH's roles as caregivers to their family members. Thanks to combination antiretrovirals that helpPLWHlive longer and have healthier lives, many olderPLWHnow find themselves in a position to provide care to family members. To help olderPLWHage successfully, it is important to understand their role as caregivers while they juggle responsibilities with their own health care needs. Objectives: This article elucidates this gap in the literature on older PLWH who are caregivers and provides direction for a research agenda and potential clinical implications.

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Older Adults’ and Their Informal Caregivers’ Experiences and Needs regarding Nutritional Care Provided in the Periods before, during and after Hospitalization: A Qualitative Study

Background: To enhance prevention and treatment of malnutrition in older adults before, during and after hospitalization, deeper understanding of older adults’ and informal caregivers’ perspective on nutritional care is important. Methods: One-time in-depth interviews were conducted with 15 older adults who had been discharged from hospital, and seven informal caregivers. We explored their experiences and needs regarding nutritional care provided in the periods before, during and after hospitalization. Findings: Five themes emerged from the data: (1) dietary intake, (2) food service during hospitalization, (3) nutrition-related activities, (4) whose job it is to give nutritional care, and (5) competing care priorities. Further, several opinions about nutritional issues were identified. Older adults and informal caregivers did not always experience optimal nutritional care. When discussing nutritional care, they mainly focused on the in-hospital period. When providing nutritional care and developing guidelines, older adults’ and informal caregivers’ perspective on nutritional care should be incorporated. Here, the periods before, during and after hospitalization should be taken into account equally. 

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Nursing Home Care Intervention Post Stroke (SHARE) 1 year effect on the burden of family caregivers for older adults in Brazil: A randomized controlled trial

Objectives: The purpose of this study is to evaluate the effect of home‐care nursing intervention on the burden of family caregivers for older adults surviving a stroke. A randomised clinical trial blinded for outcome evaluation. Methods: Forty‐eight family caregivers of older adults surviving a stroke took part in the study. The intervention group (IG) received three home visits by nurses in 1 month after hospital discharge for guidance on the disease and care activities for the elderly people. The control group (CG) relied on the service network that had access. The Caregiver Burden Scale was applied to assess the burden outcome 1 week, 60 days and 1 year after hospital discharge. Results: The caregivers of the intervention and CGs had no difference regarding baseline data. There was an interaction effect between the CG and the IG in the isolation domain (p = 0.037) and in the emotional involvement domain (p = 0.003) over time. Conclusions: These findings provide support for strengthening a care line for the elderly people after a stroke, with adequate discharge planning, indicating the importance of integrating care network services such as primary care, home care and hospital care with a view to achieving an effective care transition. It is also necessary to construct a specific instrument to evaluate other outcomes, such as the knowledge and learning of caregivers in relation to the care activities taught. 

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Non-use of community health-care services - An exploratory cross-sectional study among family care-givers for older, home-dwelling persons with dementia

Background: Community health-care services for older, home-dwelling persons with dementia tend to be underutilised. Family care-givers provide substantial care, and they often arrange for and co-ordinate health-care services on behalf of persons with dementia. Objectives: The aim of this study was to examine family care-givers' knowledge of unused services and their self-reported reasons for non-use of such services. We gathered cross-sectional survey data from 430 family care-givers of older persons with dementia in Northern Norway. Methods: Multinomial logistic regression analysis was used to identify predictors of family care-givers' knowledge of unused services. An open-ended question regarding reasons for non-use of services was analysed by thematic text analysis. Findings: Characteristics of family care-givers (e.g. education level) and factors related to the care-giving circumstances (e.g. negative impact of care-giving) predicted family care-givers' knowledge of unused services. Reasons for non-use of services were multifaceted and complex, and were related to attributes of the person with dementia and/or the family care-giver (e.g. reluctance to use services) and/or the health-care services (e.g. low quality). Although services were unused, several family care-givers indicated substantial needs for the services. Conclusions: Strategies aimed at addressing the non-use of services should emphasise individuals' and families' needs and the adaptation of information about available services and their benefits for both care recipients and family care-givers. A relationship-centred care approach is thus recommended in dementia care. 

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Needs of patients with dementia and their caregivers in primary care: lessons learned from the Alzheimer plan of Quebec

Background: Persons living with dementia have various health and social care needs and expectations, some which are not fully met by health providers, including primary care clinicians. The Quebec Alzheimer plan, implemented in 2014, aimed to cover these needs, but there is no research on the effect this plan had on the needs and expectations of persons living with dementia. The objective of this study is to identify persons living with dementia and caregivers’ met and unmet needs and to describe their experience. Methods: This is a sequential mixed methods explanatory design: Phase 1: cross-sectional study to describe the met and unmet health and social care needs of community-dwelling persons living with dementia using Camberwell Assessment of Need of the Elderly and Carers’ Assessment for Dementia tools. Phase 2: qualitative descriptive study to explore and understand the experiences of persons living with dementia and caregivers with the use of social and healthcare services, using semi-structured interviews. Data from phase 1 was analyzed with descriptive statistics, and from phase 2, with inductive thematic analysis. Results from phases 1 and 2 were compared, contrasted and interpreted together. Results: The mean total number of needs reported by the patients was 5.03 (4.48 and 0.55 met and unmet needs, respectively). Caregivers had 0.52 met needs (3.16 unmet needs). The main needs for both were memory, physical health, eyesight/hearing/communication, medication, looking after home, money/budgeting. Three categories were mentioned by the participants: Persons living with dementia and caregiver’s attitude towards memory decline, their perception of community health services and of the family medicine practice. Conclusions: Our study confirms the findings of other studies on the most common unmet needs of the patients and caregivers that are met partially or not at all. In addition, the participants were satisfied with access to care, and medical services in primary practices, being confident in their family. Our results indicate persons living with dementia and their caregivers need a contact person, a clear explanation of their dementia diagnosis, a care plan, written information on available services, and support for the caregivers.

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Navigating through incontinence: A qualitative systematic review and meta-aggregation of the experiences of family caregivers

Background: Community dwelling older adults who are care dependent are highly affected by incontinence, resulting in substantial informal caregiver burden. Understanding the experiences of these caregivers is needed to develop supportive programs that reduce caregiver burden and rates of institutionalization for care recipients. Objectives: This systematic review aimed to critically appraise and synthesize the qualitative literature on the perceptions, experiences, and consequences of informal caregivers managing incontinence in community dwelling older adults. Design: A qualitative evidence synthesis using meta-aggregation. Data sources: CINAHL, Embase, Ovid Medline, PsycInfo, Scopus, and ProQuest Dissertations and Theses. Review methods: A comprehensive search was conducted to identify qualitative studies of all designs, published in English from January 1970 to November 2020, reporting on the experiences of unpaid adult family members or friends providing care at home to an adult aged 60 or older with urinary and/or fecal incontinence. Screening, data extraction, and quality appraisal were conducted independently by two reviewers, with disagreements resolved by consensus with all team members. Joanna Briggs Institute (JBI) processes were used to assess study quality, and the dependability and credibility of both study findings and synthesized findings. All articles included met predetermined criteria. Results: Database searches yielded 1165 references, of which 117 full-text documents were screened. Seven articles of moderate to high methodological quality met eligibility criteria and were included. Studies occurred in nine countries with 134 participants who were mostly female spouses of the care recipient. From these eligible studies, 49 findings were extracted with 35 equivocal or credible findings eligible for meta-aggregation. Findings were synthesized into the following four categories: 1) emotional responses, 2) physical, financial, and social consequences, 3) family roles and caregiver support, and 4) management and coping strategies. Conclusions: Informal caregivers experience many physical, psychosocial, and financial challenges in caring for an older family member with incontinence. Educational and supportive programs for managing incontinence should be multi-component and tailored to meet the individual needs of informal caregivers. Future research should incorporate strategies to cope with emotional responses and offer practical strategies for managing incontinence. 

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A national survey of caregiver’s own experiences and perceptions of U.S. health care system when addressing their health and caring for an older adult

Background: Caregiving is a demanding role that can negatively impact a person’s health and well-being. As such, adequate access to health care is important for maintaining the family caregiver’s own personal health. Objectives: The aims of this study were to identify if family caregivers of older adults had more difficulty accessing health care services than non-caregivers and to identify if family caregivers felt access to additional services would be beneficial for maintaining their own personal health care. Methods: National survey of 3026 US adults aged 30 to 89 years old. Participants were grouped based on self-reported caregiving experience. Survey asked about access to care, importance of health care services and whether caregivers had support needed. Descriptive statistics were used to compare caregiver and non-caregiver’s responses. Multivariate logistic regression model assessed correlates of caregivers not having the support they needed. Results: Caregivers were older, female, lower educational attainment, lower income, had more multiple chronic health conditions and health condition or disability that impacts their daily life. Caregivers reported difficulty accessing mental health services, dental services, medications, and supportive services at home. Caregivers felt it was important to have care coordinator, long-term relationship with primary care provider and access to house calls, telemedicine, and medications delivered to the home. Age, ethnicity, chronic conditions and confidence in finances were factors influencing whether caregiver had support needed to provide assistance to older care recipient. Conclusion: Caregivers provide needed support and care to older adults while also needing support for themselves. Health care services delivered in the home were highly desirable to caregivers and could help them maintain their health and well-being.

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Namaste care delivered by caregivers of community‐dwelling older adults with moderate to advanced dementia: A mixed methods study protocol

Aim: The aim of this study is to adapt and evaluate the feasibility, acceptability, and preliminary effectiveness of a multisensory, psychosocial intervention called Namaste Care delivered by family and friend caregivers of community‐dwelling older adults with moderate to advanced dementia. Design: A multiphase mixed methods design combining quantitative and qualitative methods will be used. Methods: This study is composed of two phases. Phase 1 is guided by a qualitative description approach. Small group workshop sessions with 8–10 caregivers of community‐dwelling older adults with moderate to advanced dementia will be conducted to adapt Namaste Care. In Phase 2, 10–20 caregivers will receive training and implement the adapted Namaste Care approach at home. A one group, before‐after design will be used to evaluate feasibility, acceptability and preliminary effectiveness of the approach over 3 months. Feasibility will be assessed using quantitative measures and acceptability will be explored using qualitative methods. Outcomes to evaluate preliminary effectiveness include quality of life (QoL), positive perceptions of caregiving, self‐efficacy, and caregiver burden. Discussion: There are currently few skill‐building interventions that can be delivered by caregivers of people with moderate to advanced dementia at home. Caregivers should be involved in developing programs to enhance program relevance. This research will be the first to explore the feasibility of implementing the Namaste Care approach at home by caregivers. Impact: Study results will provide important information about the feasibility and preliminary effects of an adapted form of Namaste Care. This program has the potential to improve the QoL of caregivers and may prevent hospitalization or long‐term care placement of older persons with moderate to advanced dementia. The revised Namaste Care program supports building the skills of caregivers so that their needs and the needs of older persons with dementia living at home are being addressed.

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Multiple Caregivers, Many Minds: Family Discord and Caregiver Outcomes

Background and Objectives: Family caregivers often have other family members helping to provide care. The purpose of our study was to examine relationships between care coordination quality among family members and the following caregiver outcomes: caregiver mental health (depressive symptoms, anxiety), social activity restrictions, and caregiver burden. Research Design and Methods: Secondary analysis was conducted using data from the 2017 Pittsburgh Regional Caregivers' Survey. Six hundred and fifty-five caregivers who had other family members helping with care reported discordance in care coordination, depressive symptoms, anxiety, social activity restrictions, caregiving burden, and covariates such as demographics and known risk factors for negative caregiver outcomes. We used multiple logistic regression and negative binominal expansion models in the analysis. Results: Discordant care coordination was associated with higher levels of caregiver depressive symptoms (p <.001), anxiety (p <.01), social activity restriction (p <.001), and caregiver burden (p <.001) after controlling for known risk factors. Discussion and Implications: We found that lower quality of family care coordination was associated with negative caregiver outcomes. Future research should further investigate the dynamics of family care coordination and impacts on both caregivers and care recipients. The results suggest that caregiver interventions attempting to understand and decrease care coordination discord should be a priority.

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#MoreThanAVisitor: Families as "Essential" Care Partners During COVID-19

The public health response to the current Coronavirus pandemic in long-term care communities, including assisted living, encompasses prohibiting visitors. This ban, which includes family members, has been criticized for being unfair, unhealthy, and unsafe. Against this backdrop, I examine the roles family play in residents' daily lives and care routines. I argue that classifying family as "visitors" rather than essential care partners overlooks their critical contributions and stems from taken-for-granted assumption about gender, families, and care work, and I demonstrate why families are more than visitors. Policies that ban family visits also reflect a narrow understanding of health that focuses on mitigating infection risk, but neglects overall health and well-being. This policy further stems from a limited comprehension of care relations. Research shows that banning family visits has negative consequences for residents, but also families themselves, and direct care workers. I argue that identifying ways to better understand and support family involvement is essential and demonstrate the utility of the Convoys of Care model for guiding the reconceptualization of family in long-term care research, policy, and practice during and beyond the pandemic.

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Mobile geriatric team for older people: A qualitative descriptive study of relatives' views on what creates senses of security and quality of care

Background: Multimorbidity tends to increase with age. Providing care that is individualized and that focuses on the whole person rather than on separate health issues is a challenge for healthcare, due to a lack of coordination and information exchange. In the future, relatives will need to take even more responsibility for their next of kin. Objectives: The aim of this study was to explore relatives' views of aspects that create a sense of security and feelings of quality of care related to acute mobile geriatric care for older people in their own homes. Methods: Data were collected using semi-structured interviews analysed using content analysis. Findings: This study is reported in accordance with the COREQ checklist. Interpersonal factors such as straightforward communication, empathy, having time for the person, a focus on the person, and having a few known caregivers who are easy to contact, rather than more clinical factors, have been identified as central to creating a sense of security and quality of care.

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Mobile Apps to Support Family Caregivers of People With Alzheimer Disease and Related Dementias in Managing Disruptive Behaviors: Qualitative Study With Users Embedded in a Scoping Review

Background: People with Alzheimer disease and related dementias often display disruptive behaviors (eg, aggression, wandering, and restlessness), which increase family caregivers’ burden of care. However, there are few tools currently available to help these caregivers manage disruptive behaviors. Mobile apps could meet this need, but to date little is known about them. Objective: The aims of our study were to identify existing mobile apps designed to support family caregivers of people with Alzheimer disease and related dementias in managing disruptive behaviors; explore whether family caregivers view these mobile apps as relevant to meeting their needs and as useful in managing disruptive behaviors; and document the types of mobile apps that are of interest and appeal to most family caregivers (with regard to format, ergonomics, and clarity). Methods: A review of mobile apps initially conducted in February 2018 was updated in March 2019 with 2 platforms (App Store [Apple Inc.] and Google Play [Google]). The selected apps were first analyzed independently by 3 raters (2 students and 1 researcher) for each of the platforms. A focus group discussion was then held with 4 family caregivers to explore their perceptions of the apps according to their needs and interests. The content of the discussion was analyzed. Results: Initially, 7 of 118 apps identified met the inclusion criteria. An eighth app, recommended by one of the knowledge users, was added later. Four family caregivers (women aged between 58 and 78 years) participated in the discussion. Participants expressed a preference for easy-to-understand apps that provide concrete intervention strategies. They reported being most inclined to use two apps, Dementia Advisor and DTA Behaviours. Conclusions: Few mobile apps on the market meet the needs of family caregivers in terms of content and usability. Our results could help to address this gap by identifying what family caregivers deem relevant in a mobile app to help them manage disruptive behaviors.

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A mixed methods systematic review of informal caregivers' experiences of fall risk among community‐dwelling elders with dementia

Background: Evidence on effective fall prevention strategies for community‐dwelling elders with dementia is limited, although these elders are at high risk of falling. Informal caregivers may play an essential role in managing fall risk for elders with dementia. Thus, understanding caregiver's experiences is critically important. Objectives: This systematic review aims to (a) identify caregivers' perceptual, emotional and behavioural responses to fall risk in elders with dementia and (b) examine the outcomes and effects of caregiver behavioural responses. Methods: A mixed methods systematic review of 10 databases (PubMed, PsycINFO, CINAHL, Social Service Abstracts, Social Work Abstracts, EMBASE, Web of Science, Scopus, Cochrane Library and TRIP Medical Database) was conducted. We searched English language, peer‐review articles (January 1, 1985–March 20, 2020) that met the predefined inclusion/exclusion criteria. Study quality was assessed using the Mixed Methods Appraisal Tool. Data were analysed using thematic synthesis techniques. Findings: Twenty‐nine studies were included. Six analytic themes were generated concerning caregivers' perceptual, emotional and behavioural responses: (a) fear of the negative health consequences of falls; (b) limited insights into factors contributing to falls; (c) varying expectations of managing fall risk; (d) multi‐level efforts; (e) struggling with responsibilities; and (f) inaction and withdrawal. The findings about the outcomes and effects of caregivers' behaviours were synthesised into three analytic themes: (a) multi‐faceted outcomes; (b) uncertain and inconsistent evidence; and (c) unclear associations. Conclusions: The study generated new insights in understanding caregivers' responses of fall risk among community‐dwelling elders with dementia and identified significant gaps in examining the impact of caregivers' responses and what shapes these responses. Investment in understanding caregivers' perspectives will inform future interventions and policies to reduce negative outcomes for elders, caregivers and care systems.

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A mirror image: Experiences of informal carers caring for frail, older persons at risk from falling

Background: Falls can lead to social isolation, anxiety and depression for those who fall, although little is known about how informal carers manage those at risk from falling at home. Objectives: This study aimed to explore the experiences of informal carers who care for frail, older people at risk from falling at home. Methods: A qualitative study using thematic analysis was conducted for this purpose. Data were collected via one-to-one, semi-structured interviews. Findings: Informal carers experienced social isolation, significant adjustments to their working lives, a fear of further falls, tiredness, anxiety and depression. Conclusions: These findings mirror previous observations, which have found that falling is a predictor of both physical and psychological changes, although in those who fall rather than those who care for them. This highlights the need for both health and social care services to identify the impact of care recipient falls on the informal carer. 

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Mindfulness- and compassion-based interventions for family carers of older adults: A scoping review

Objectives: To provide an overview of the current use of mindfulness- and compassion-based interventions with family carers of older adults, to aid primary healthcare practitioners in their decision-making around referral to wider healthcare services. The study was guided by four research questions: what interventions are currently used; whom they are used with; why they are used; and their evidence-base in terms of acceptability and effectiveness. Methods: A scoping study using the methodological frameworks of Arksey and O'Malley and Levac et al. Searches of electronic databases (MEDLINE, CINHAL, PsycINFO), reference lists of relevant articles, and journal websites were conducted in June 2019. Search terms were developed via an iterative process, and included medical subject headings and keywords relating to mindfulness and compassion, interventions, and family carers. Articles were included if: written in English; published in a peer-reviewed journal; employed quantitative, qualitative, or mixed-method research designs; and described a mindfulness- and/or compassion-based intervention for adults identified as a family carer of an older adult. Data from included studies were charted (using a purposively-designed template), and descriptively analysed in relation to the study's research questions. Findings: From 2005 unique records, 32 primary studies were included. Seven types of mindfulness- or compassion-based interventions were broadly described within studies, including: mindfulness-based stress reduction (n = 13), mindfulness-based cognitive therapy (n = 3), meditation interventions (n = 9), acceptance and commitment therapy (n = 1), dialectical behaviour therapy (n = 1), compassion-focused therapy (n = 1), and study-specific interventions involving a combination of mindfulness and/or compassion (n = 4). Studies sampled a total of n = 991 participants and targeted six family carer sub-groups: dementia (n = 23), cancer (n = 5), amyotrophic lateral sclerosis (n = 1), chronic conditions (n = 1), cirrhosis (n = 1), and Parkinson's disease (n = 1). A variety of health outcomes were assessed across interventions, with the most common being depression (n = 26), anxiety (n = 15), burden (n = 15), quality of life (n = 14), and stress (n = 11). The evidence-base for each intervention was insufficient and too heterogeneous to make clear statements regarding effectiveness. However, based on these findings, interventions show some potential utility in supporting family carers in their role and, given a collective rate of attrition (18%), may do so in a way that is acceptable to carers. Conclusions: This scoping study highlighted the nascent use of mindfulness- and compassion-based interventions with family carers of older adults, and provided important substantive detail about what each intervention entails. Based on current evidence, a number of implications for research and practice are presented.

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"A Little Bit of Their Souls": Investigating the Concept of Dignity for People Living With Dementia Using Caregivers' Blogs

Background: Dignity is an important component of quality of life and a core value of family nursing care. Few studies have explored dignity in community-dwelling adults with dementia. Methods: This study used blogs written by caregivers to explore the concept of dignity in dementia caregiving. A template analysis of blogs written by family caregivers of people with dementia was conducted. Findings: Four themes were defined a priori in relation to Jacelon's model of dignity: perceived value from others, self in relation to others, behavioral respect, and self-value. Caregivers wrote about experiences that related to each of the four a priori themes from Jacelon's model. In addition, the theme of dignity by proxy was derived from the analysis. Conclusions: By understanding the concept of dignity in the context of dementia family caregiving, interventions and services can be developed to improve family quality of life through dignifying, family-focused care.

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Life under lockdown and social restrictions - the experiences of people living with dementia and their carers during the COVID-19 pandemic in England

Background: The impact of COVID-19 restrictions on people living with dementia and their carers is an emerging focus of recent research determining how we can best support this population. People living with dementia have faced service curtailment, increased risk for COVID-19, as well as potential heightened deterioration. This study reports the experiences of people living with dementia and their family carers during the early months of the COVID-19 pandemic in England and the impact on them. Methods: We recruited and remotely interviewed 30 people living with dementia in their own homes and 31 family carers, via video or telephone call in mid-2020. Data were transcribed and analysed using thematic analysis. Results: People living with dementia often had a basic understanding of COVID-19 restrictions but could have difficulty translating this into personalised risk-appraisal of their own actions. Managing COVID-19 risks facing people living with dementia at home was largely done by family carers, exemplified by changes to living arrangements, which could strain or sustain caring relationships. Well-established familial caring relationships contributed to the wellbeing of the person living with dementia and their carer, as well as keeping to simple routines that included leaving the home for exercise and stimulation. People living with dementia reported some negative psychological and cognitive effects due to the imposed restrictions, such as increased apathy, irritability, or anxiety, which were fuelled by lack of social engagement. Conclusions: Structuring routine (remote) social interactions where possible could increase social engagement and improve wellbeing for people living with dementia, especially those with limited familial support in a post-COVID-19 context. As some care relationships had been restructured to manage COVID-19 risks, additional carer strain may emerge as a result of the impact on the independence of the person living with dementia and come to the attention of professionals in health and care services. People living with dementia and their carers highlighted the importance of maintaining or adapting routines which may be useful learning for professionals, although additional support may be necessary for those who are impacted by more severe or worsening symptoms of dementia.

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The Journey of Recovery: Caregivers' Perspectives From a Hip Fracture Telerehabilitation Clinical Trial

Objective: The objective was to explore family caregivers' perspectives of the recovery process of older adults with hip fracture and describe experiences from caregivers who: (1) used the online intervention, or (2) received home-based care provided by the Andalusian Public Health Care System. Methods: This was an exploratory secondary study with informal family caregivers who had an older adult family member with hip fracture enrolled in a novel telerehabilitation (telerehab) clinical trial. Forty-four caregivers of older adults with hip fracture were interviewed at 6 to 9 months after their family member's hip fracture. Results: Caregivers shared concerns of family members' survival and recovery; they recounted increased stress and anxiety due to the uncertainty of new tasks associated with providing care and the impact on their lifestyle. Although most caregivers were satisfied with the health care received, they made suggestions for better organization of hospital discharge and requests for home support. The main reasons why caregivers and their family member chose the telerehab program were to enhance recovery after fracture, gain knowledge for managing at home, and because of the convenience of completing the exercises at home. There were more family caregivers in the control group who expressed a high level of stress and anxiety, and they also requested more social and health services compared with caregivers whose family member received telerehab. Conclusion: Family caregivers are an essential component of recovery after hip fracture by providing emotional and physical support. However, future clinical interventions should evaluate person-centered interventions to mitigate possible stress and anxiety experienced by family caregivers. Impact Family caregivers' perspectives are necessary in the co-design of management strategies for older adults after hip fracture.

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"It Wasn't Like We Expected": Analyzing (Non-)Participation of Family Caregivers of People With Dementia in Sports Activities From Different Perspectives

Background: Family caregivers of people with dementia represent a physically and psychologically burdened target group, which can benefit from offers of health promotion, but rarely use existing services. This article deals with the motives and conditions that induce this target group to be (not) active in sports. Methods: For this purpose, the perspectives of family caregivers and local sports clubs in Germany are compared to uncover similarities and discrepancies with the aim of developing target group-specific health promotion services. Results: Results were classified into three dimensions for (non-)participation in sports activities. People who participated in sports club programs generally confirmed its positive effects. Among other things, the sports clubs and family caregivers surveyed emphasized the compatibility of the care situation with possible leisure activities as very important components for (non-)participation. Conclusions: The results show that the subjective health attitudes must be taken into account in the design of health promotion offers.

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Is the grass greener on the other side? The health impact of providing informal care in the UK and the Netherlands

Background: Facing rapidly ageing populations, many Western countries aim to stimulate informal care provision as a way to meet the growing long-term care (LTC) demand. While various studies report the impact of providing informal care on the health of caregivers, it is less clear whether and to what extent this impact differs across countries. Methods: Using propensity score matching we match caregivers to similar non-caregiving individuals using four waves of the Dutch Study on Transitions in Employment, Ability and Motivation and the UK Household Longitudinal Study. The samples consist of 8129 Dutch and 7186 UK respondents, among which respectively 1711 and 1713 individuals are identified as caregivers. We explore whether the health impact of providing informal care differs by country once similar caregivers, in terms of the intensity of provided care, are compared. Results: In both countries we find negative mental health effects of providing informal care. While these effects slightly differ by country, the main differences arise between subgroups of caregivers. Individuals that provide more than 20 hours of informal care per week, and those who face a double burden of care and full-time employment experience the most severe negative mental health effects. Conclusions: These results indicate that health effects of providing informal care are mediated by the specific caregiving context, allowing policymakers to use information on this context to provide targeted aid. In addition, it suggests that previously reported differences of caregiving effects across countries could be driven by differences in the population of informal caregivers which are shaped by countries’ LTC policies. 

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Is informal care sufficient to meet the long-term care needs of older people with disabilities in China? Evidence from the China Health and Retirement Longitudinal Survey

Background: Rapid demographic shifts and socio-economic changes are fuelling concerns over the inadequate supply of informal care - the most common source of care-giving for older people in China. Unmet long-term care needs, which are believed to cause numerous adverse effects on health, continue to increase. Methods: Drawing data from the 2015 wave of the China Health and Retirement Longitudinal Survey, this study explores the relationship between informal care provision and unmet long-term care needs among older people in China. We first examine the availability of informal care among older people with disabilities. We then analyse whether a higher intensity of informal care leads to lower unmet needs. Findings: Our findings suggest that the majority of older people with disabilities receive a low intensity of care, i.e. less than 80 hours per month. Besides, a higher intensity of informal care received could significantly lower the probabilities of unmet needs for the disabled older adults who have mainly instrumental activities of daily living limitations. Our study points out that informal care cannot address the needs of those who are struggling with multi-dimensional difficulties in their daily living. Conclusions: Our findings highlight a pressing need for the government to buttress the formal care provision and delivery systems to support both informal care-givers and disabled older people in China. 

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Interventions to Improve Health and Well-Being Among Family Caregivers of Older Adults With Chronic Illnesses: A Scoping Review

Background: Caregivers of older adults with chronic illnesses often face challenges that harm their health and well-being. Evidence-based strategies are needed to address such outcomes. Objectives: The current study aims to synthesize interventions designed to improve the health and well-being of caregivers of older adults with chronic illnesses. Methods: Search strategies included investigating four databases (e.g., PubMed, CINAHL), as well as conducting bibliographic, hand, and author searches. Eligible studies were randomized controlled trials conducted between 2009 and 2019 that included family caregivers of older adults with chronic illnesses aged =65 and that reported caregiver health or well-being outcomes. Results: Data from 24 eligible studies were extracted, analyzed, and narratively synthesized. Conclusions: Although intervention characteristics were diverse (e.g., strategies, interventionists), most improved health and well-being. Thus, providers have an array of interventions available to them to help caregivers. Future caregiver research should examine theory-driven interventions among diverse samples, clearly report intervention dose, and measure physical health.

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Interventions for Family Members After Long-Term Care Placement of a Relative With Dementia: A Systematic Review and Meta-Analysis

Objectives: The current systematic review aimed to identify, appraise, and synthesize the available evidence regarding interventions that assisted family members of long-term care facility residents with dementia to cope with stressful situations. Methods: A search of published articles in eight databases was performed. Results: In total, 1,293 records were identified, with six studies included in this systematic review. Interventions were categorized as education/skill training, psychoeducation, and psychosocial support. The risk of bias across the included studies varied from moderate to high. The intervention components, dose, and delivery methods differed widely with mixed results. The interventions showed potential benefits for reducing family members' stress-related outcomes (e.g., stress appraisal, guilt) and residents' problematic behaviors. Yet, meta-analysis yielded a non-significant pooled effect for reducing family members' depressive symptoms (mean difference = 1.38, 95% confidence interval [–2.27, 5.04], The current systematic review aimed to identify, appraise, and synthesize the available evidence regarding interventions that assisted family members of long-term care facility residents with dementia to cope with stressful situations. A search of published articles in eight databases was performed. In total, 1,293 records were identified, with six studies included in this systematic review. Interventions were categorized as education/skill training, psychoeducation, and psychosocial support. The risk of bias across the included studies varied from moderate to high. The intervention components, dose, and delivery methods differed widely with mixed results. The interventions showed potential benefits for reducing family members' stress-related outcomes (e.g., stress appraisal, guilt) and residents' problematic behaviors. Yet, meta-analysis yielded a non-significant pooled effect for reducing family members' depressive symptoms (mean difference = 1.38, 95% confidence interval [–2.27, 5.04], p = 0.46). Conclusions: Evidence in this field is currently insufficient and more well-designed studies with larger sample sizes and use of theoretical frameworks are needed. 

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Intergenerational familial care: Shaping future care policies for older adults

Background: An increasingly ageing society together with concerns about sustainability of old-age benefits call for reforming the care structure of many western welfare states. However, finding an acceptable balance between the formal care provided by institutions and informal care provided by family members is a delicate policy choice with profound ethical implications. In this respect, literature on intergenerational familial relationships can offer insights to inform policymaking in this field and help resolve the ethical concerns that excessive reliance on informal caregiving might entail. Methods: In this contribution, we start by presenting – with Switzerland as a case study – the challenges of the current care structure and illustrate some of the ethical issues that reshaping the balance between formal and informal care raises. We then review and analyse available theoretical literature on intergenerational familial relationships and present three dimensions that underpin such relationships: ethical, theoretical and practical. Findings: Based on our analysis, we provide two recommendations to inform policymaking on how to support care needs of the elderly and set an ethically acceptable balance between formal and informal care when familial generations are involved.

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Intergenerational caring: a systematic literature review on young and young adult caregivers of older people

Background: The theme of young family caregivers of older relatives is still partially uncovered, although the phenomenon is increasing worldwide. Methods: This Systematic Literature Review discusses methodological and content issues of ten articles covering this topic, in order to contribute to increase the knowledge and provide suggestions for designing effective support services for adolescent young caregivers. To this purpose, the findings of this review are framed within the caregiving stress appraisal model (renamed CSA model) elaborated by Yates’ and collegues, in order to highlight differences between young caregivers and the older ones. Methods Multiple databases including PubMed, Web of Science, Scopus, ProQuest - Psychology Database, CINAHL Complete - EBSCOHost were used to carry out a systematic review of the literature. Additional references were retrieved from experts contacted and research knowledge. The selected articles underwent both methodological appraisal and contents analysis: for every article an appraisal score was calculated and themes and sub-themes were identified. Results: Out of the ten included studies three were mixed methods, six qualitative and one quantitative. Nine reached a high quality methodological score and one medium. Four main themes emerged from the content analysis: aspects of the caregiving relationship; effects of caregiving; coping strategies; recommendations for services, policy and research. Conclusions: Selected studies explored practical features of the relationship between young caregivers and older family members (tasks performed, motivations, coping strategies) and highlighted both positive and negative outcomes on young people’s everyday life condition and future development. Nevertheless, these evidences were often limited to small samples that did not allow to make generalizations. More studies are needed including large samples in order to deepen the different aspects of caregiving and design tailored support services.

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Intention to use respite services among informal care-givers of frail older adults in China: the role of care needs change

Background: Population ageing in China calls for evidence-based solutions, especially in terms of fulfilling long-term care needs among frail older adults. Respite services are identified as effective resources for alleviating care-giver burden and promoting the wellbeing of both older adults and their family care-givers. However, respite care is often under-used in China. Objectives: This research aimed to examine factors associated with intention to use respite services among informal care-givers in Shanghai, mainland China. Methods: This study was part of the Longitudinal Study on Family Caregivers for Frail Older Adults in Shanghai. Pairs of older adults and their care-givers (N = 583) who successfully completed the 2013 and 2016 waves were included in the data analysis. Two logistic regression models were conducted, one with time-invariant and one with time-variant factors. Results: The model with time-variant factors had greater explanatory power than the original Andersen model with time-invariant factors influencing intention to use respite services among care-givers. Care-givers had higher odds of intending to use respite services if they had higher care-giving burden, were caring elderly people who experienced care-giver transitions, or were caring for elderly people with increased function of ambulation or decreased function of feeding. Conclusion: The findings imply that change in functional health was a significant determinant of intention to use respite care. Relevant policy and service implications will be discussed.

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Integration of family caregivers in delirium prevention care for hospitalized older adults: A case study analysis

Aim: To understand how family caregivers of older adults hospitalized for orthopaedic surgery are integrated by nurses in delirium prevention care. Design: Multiple case study. Methods: The sample consisted of eight cases. Each case comprised an older adult, a family caregiver, and a nurse. Data were collected from September 2017 ‐ April 2018 through various instruments, including semi‐structured interviews and family caregiver logs. Within‐ and across‐case analyses were conducted, based on the model of The Care Partner Engagement developed by Hill, Yevchak, Gilmore‐Bykovskyi, & Kolanowski (Geriatric Nursing, 35, 2014, 272). Results: Two themes emerged: (a) family caregivers were engaged in caring for the older adults during their hospital stay, though they had differences in terms of views and needs; and (b) family caregivers communicated with nurses but nurses did not recognize their role and did not integrate them much in care. Conclusion: The presence and availability of family caregivers, their sense of responsibility towards the hospitalized older adults, and their positive effects on them suggest that family caregivers could be integrated more systematically in a care partnership with nurses. Poor integration of family caregivers in delirium prevention care shows that nurse delirium prevention competencies and their relational skills for communicating effectively with family caregivers need to be developed further. Impact: Integrating family caregivers in delirium prevention care for older adults is a challenge for nurses. Family caregivers are engaged during the hospitalization of older adults, though differences and problems exist between the two groups. While there is communication between patients, family caregivers, and nurses, nurses do not recognize the role of family caregivers and hardly integrated them in the delirium prevention care of hospitalized older adults. Nurses must adopt a patient‐ and family‐centred approach. Care and training facilities must make resources available to implement this approach in nursing practice.
 

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Institutionalization of older French adults with dementia: Role of the informal carer's degree of kinship

Background: The institutionalization of a patient with Alzheimer's disease or other dementia (ADOD) is the last resort for the latter's family and/or caregivers. We hypothesized that the degree of kinship between the patient and his/her caregiver would influence the likelihood of institutionalization. Objective: To assess the association between institutionalization of patients with ADOD and the degree of kinship with the family caregiver. Methods: A cross‐sectional study of patients with ADOD aged 75 or over attending a memory center in France for the first time between 2011 and 2014, as recorded in the French National Alzheimer Database. Multivariable logistic regression was used to assess factors associated with institutionalization after adjustment for age, sex, the Mini‐Mental State Examination score, educational level, and type of dementia. Results: A total of 52,874 patients were included. The primary caregiver was most often a child (54.8%) or the spouse (36.7%). Compared with the "spouse" reference category, all the other caregiver categories were associated with a significantly greater likelihood of institutionalization; the odds ratio [95% confidence interval] was 4.68 [3.67–5.92] when the carer was a grandchild, 5.48 [4.93–6.09] for a child, 4.93 [4.11–5.91] for a daughter‐/son‐in‐law, 8.76 [7.15–10.70] for a sibling, and 8.93 [7.48–10.65] for a niece/nephew. Conclusion: The likelihood of institutionalization of older patients with ADOD varied with the degree of kinship. Compared with the "spouse" reference category, the likelihood was higher for all other types of caregivers but was especially high when the caregiver was not a direct descendant of the patient.

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Informal Caregiving and Disaster Risk Reduction: A Scoping Review

Background: Informal caregivers are a population currently in the shadows of disaster risk reduction (DRR), and yet essential to the provision of healthcare services. This scoping review explored the literature to understand issues related to informal caregiving and promising practices to support resilience for disasters. Methods: Following guidelines for scoping review as outlined by Tricco et al. (2016), relevant publications were identified from five major databases—Medline, Embase, PubMed, Web of Science, and Scopus. Relevant studies referenced informal caregiving and disasters for a variety of population groups including children, people with disabilities or chronic illnesses, and older adults. Studies were excluded if they discussed formal caregiving services (for example, nursing), lacked relevance to disasters, or had insufficient discussion of informal caregiving. Results: Overall, 21 articles met the inclusion criteria and were fully analyzed. Five themes were identified: (1) the need for education and training in DRR; (2) stressors around medication and supply issues; (3) factors affecting the decision-making process in a disaster; (4) barriers leading to disaster-related problems; and (5) factors promoting resilience. Recommended areas of strategic action and knowledge gaps are discussed. Many informal caregivers do not feel adequately prepared for disasters. Conclusions: Given the important role of informal caregivers in healthcare provision, preparedness strategies are essential to support community resilience for those requiring personal care support. By understanding and mobilizing assets to support the resilience of informal caregivers, we also support the resilience of the greater healthcare system and the community, in disaster contexts.

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Informal Caregiving and All-Cause Mortality: A Meta-Analysis of Longitudinal Population-Based Studies

Methods: Using the random-effects meta-analysis model, we investigated the effect of informal caregiving on all-cause mortality across 12 longitudinal population-based studies (seven United States; five international: United Kingdom, Northern Ireland [2], Japan, and Australia). Results: Across the studies, the combined effect of informal caregiving on all-cause mortality was 16% lower in favor of caregivers. Subgroup analyses revealed that the relationship between informal caregiving and all-cause mortality was not significant among the U.S. studies, in contrast to the international studies. Also, the mortality advantage of informal caregivers was not evident among those studies in which informal caregiving was operationalized precisely (Activity of Daily [ADL]/Instrumental Activity of Daily Living [IADL] assistance) as opposed to more broadly. Furthermore, studies in which the kinship tie between the informal caregiver and care recipient was unspecified tended to find a mortality advantage in favor of caregivers. Conclusions: When covariates were considered, the results of this meta-analysis provided more support for stress theory than the healthy caregiver hypothesis. 

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Informal Caregivers along the Work-Eldercare Axis: A Comparative Analysis of Australia, England, and Israel

Background: Contemporary Western societies face an increasing demand for informal care. Objectives: The primary goals of the present article are to understand the degree to which employment rights support the needs of working carers' of elder age relatives and to underscore the need to promote social policies to better secure both working carers and their older relatives. Drawing on findings showing that high-intensity caregiving is associated with a reduction in the labour pool for paid work and negatively affects employment status and career, this study examines how employment legislation support working caregivers from an international perspective. Methods: The study utilizes an intrinsic and case study research design to compare the employment rights and entitlements in Australia, England, and Israel. Results: The findings indicate that, first, all three countries surveyed provide basic protection through statutory employment rights which are categorized under three fundamental occupational entitlements: Paid or Unpaid Leave, Sick Days and Equal Rights. Secondly, while Australia and England maintain a legal right to request flexible work to care for elder relatives, the analysis foregrounds the absence of flexible employment legislation in Israel. Conclusions: Thought that the aim of balancing limited public resources with family resources requires a broad understanding of concrete legislation, such comparison can inform policy targeted to reconcile distress along the work-eldercare axis. 

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Informal Care of Dependent Older People—Support Services and Funding Schemes

This chapter is dealing with aspects regarding informal care of dependent older people. Based on the analysis of the information obtained from the good practice and the informal care regulatory status in Romania, the authors proposed a set of support services and funding schemes that could be implemented in our country as follows: care leave and care allowance; palliative care leave; prolonged care leave; the employment of a personal assistant under the terms of the Framework Law no. 153/2017; allowance for long-term care; pension for severe dependence; flexible working arrangements for the informal caregiver; the possibility of early retirement up to 2 years before reaching the standard retirement age, without penalizing the amount of pension rights; respite care. The methodology was based on the good practices research, using qualitative and quantitative information from bouth primary and secondary sources of information.

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Informal care in the context of long-term health care for the elderly in Slovenia: A qualitative study

Background: Slovenia is an aging society. Social security expenditures for the elderly are rising steadily, and the majority of Slovenians are firmly convinced that the state must provide elder care. This situation means that informal caregivers face many challenges and problems in their altruistic mission. Objectives: To explore the experiences and feelings of informal caregivers and to provide an understanding of how informal caregivers support the elderly and what challenges and difficulties they face in Slovenian society. Methods: The study is based on qualitative semi-structured interviews with 10 caregivers. In addition to descriptive statistics, we conducted a qualitative study using the qualitative content analysis method. Findings: We identified four themes among health caregivers’ experiences with challenges and problems in providing long-term health care for the elderly. Caregivers pointed out that they are mostly left to themselves and their altruistic mission of giving informal long-term care to their elderly relatives and friends. Systemic regulation of the national public health care system is the source of many problems. Other social systems determine and limit the position of informal caregivers in Slovenia. Conclusions: This qualitative study should be understood as useful stepping-stone to future research and real improvement in this area.

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Informal care and the impact on depression and anxiety among Swedish adults: a population-based cohort study

Background: As the population is ageing, the need for informal caregivers increases, and thus we need to know more about the effects on caregivers. This study aims to determine both cross-sectional and longitudinal associations between perceived limitation of informal caregiving and mental health of caregivers. Methods: This population-based cohort study was based on the Swedish Psykisk hälsa, Arbete och RelaTioner (PART) study, and 9346 individuals aged 18–65 were included. Data were collected through questionnaires, interviews and Swedish registers. Informal care was defined as care given to a family member. Self-reported and diagnosed depression and anxiety were included as outcomes. Covariates included sex, age, social support and socio-economic position. Ordinal logistic regression and Cox regression were performed to determine the associations between caregiving and anxiety or depression. Results: Self-reported depression and anxiety was only increased among those experiencing limitations (adjusted odds ratios [aOR] 2.00, 95% confidence intervals [CI] 1.63–2.47 for depression; aOR 2.07, 95% CI 1.57–2.74 for anxiety) compared to those not giving care, respectively. The adjusted hazard ratio (aHR) were increased for diagnosed depression (aHR 1.97, 95% CI 1.27–3.05) and for diagnosed anxiety (aHR 1.86, 95% CI 1.06–3.25) among those giving care and experiencing limitations, compared to those not giving care. No significant associations were found in caregivers without limitations. Conclusion: Caregivers experiencing limitations showed a significant association with short- and long-term anxiety and depression. This study implies the importance of exploring the degree to which informal caregiving can be provided without adding burden to caregivers.

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The Influence of Confucianism on the Perceptions and Process of Caring Among Family Caregivers of Persons With Dementia: A Qualitative Study

Background: Scant evidence reveals the influences of Confucianism on family caregiving in dementia. The purpose of this study was to explore the influence of Confucianism on the perceptions and process of caring among the Chinese family caregivers. Method: A qualitative study was conducted using semistructured interviews with 15 Chinese family caregivers of persons with dementia in three elderly care centers in Hong Kong. The interviews were audiotaped and transcribed, while a thematic analysis was performed to analyze the transcript at the latent level. Results: Three themes emerged from the interviews: (a) setting family as a top priority, (b) growth and development in families, and (c) enhancing family relationships. Discussion: Our findings provided insights into how Confucianism influences the experience of family caregivers in caring persons with dementia in Chinese communities. These findings help develop culturally adapted interventions to improve the support for family caregivers of persons with dementia.

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The importance of familiarity with caregiving for public caregiver stigma: Evidence from a cross-sectional study in Germany

Objectives: This study aimed to investigate the association between familiarity with caregiving and public stigma towards informal caregivers of older individuals. Material and methods: The sample for this Online-Survey was identified using a quota-system based on German micro census data (N=1037; aged 18 years and older, living in Germany). Familiarity with caregiving was assessed by asking whether the participant has experience in or has friends or relatives with experience in informal or professional caregiving for individuals aged 65 years or older. Public caregiver stigma was assessed by analyzing the emotional, behavioral and cognitive reactions towards caregivers as described in a vignette. Results: Adjusted regressions analyses indicated that experience in providing informal care was associated with increased appreciative feelings and statements, and decreased social distance. Experience in providing professional care was associated with increased devaluing statements. Having friends or relatives who have experience in informal caregiving was associated with decreased social distance. Having friends or relatives who have experience in professional caregiving was associated with decreased devaluing feelings, increased appreciative feelings and decreased social distance. Conclusions: Results indicate that familiarity with caregiving, through one's own informal care experience or through contact with informal or professional caregivers, reduced public stigma towards informal caregivers. Moreover, experience with informal care or contact with professional caregivers increased appreciation of informal caregivers. However, increased negative stigmatizing statements were indicated among participants with experience in professional caregiving. Fostering contact and cooperation between informal caregivers and non-caregivers, as well as with professional caregivers may help reduce stigmatizing reactions. 

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Implementing a Reablement Intervention, "Care of People With Dementia in Their Environments (COPE)": A Hybrid Implementation-Effectiveness Study

Background and Objectives: The translation of reablement programs into practice is lagging despite strong evidence for interventions that maintain function for the person living with dementia as well as improve carer well-being. The aim was to evaluate the implementation of an evidence-based program, Care of People with Dementia in Their Environments (COPE), into health services. Research Design and Methods: An implementation-effectiveness hybrid design was used to evaluate implementation outcomes while simultaneously involving a pragmatic pre–post evaluation of outcomes for people with dementia. We report uptake, fidelity to intervention, outcomes for people living with dementia and carers, and beliefs and behaviors of interventionists contributing to successful implementation. Results: Seventeen organizations in Australia across 3 health contexts, 38 occupational therapists, and 17 nurses participated in training and implementation. While there were challenges and delays in implementation, most organizations were able to offer the program and utilized different models of funding. Overall, we found there was moderate fidelity to components of the program. Pre–post outcomes for carer well-being and coping (Perceived Change Index, p < .001) and activity engagement of the person living with dementia (p = .002) were significantly increased, replicating previous trial results. What contributed most to therapists implementing the program (Determinants of Implementation Behaviour Questionnaire) was a stronger intent to deliver (p < .001), higher confidence (p < .001), a sense of control in delivery (p = .004), and a belief the program was very useful to their clients (p = .002). Discussion and Implications: This study demonstrated that implementation is possible in multiple health systems and beneficial to individuals and their families.

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Importance of Day-Care Centers in Dementia Care: A case Study From India

The caregivers of persons living with dementia (PLwD) have to provide full-time caregiving to the individual, in addition to other responsibilities in their own life. Providing care to a PLwD affects their quality of life and mental health. In such a context, clinicians have to guide caregivers in decreasing caregiver's burden through appropriate referrals. Day-care centers can be one such service, which is illustrated with the support of a case here.

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Impact of the Outbreak of the COVID-19 Pandemic on Formal and Informal Care of Community-Dwelling Older Adults: Cross-National Clustering of Empirical Evidence from 23 Countries

Background: The COVID-19 pandemic has been dramatically affecting the life of older adults with care needs and their family caregivers. This study illustrates how the initial outbreak of the pandemic changed the supply of formal and informal care to older adults in European countries and Israel and assesses the resilience of these countries in providing support to their older populations by means of a mix of both types of care. Methods: We subjected data from the Survey of Health, Ageing and Retirement in Europe COVID-19 period (SHARE-COVID-19) across 23 European countries (including Israel) to descriptive and cluster analyses. Results: In the first wave of the outbreak, a significant proportion of older adults in European countries received informal help, with an increase in the frequency of informal help received from children, neighbors, friends, or colleagues and a decrease in that received from other relatives. In most countries, difficulties in receiving home care services from professional providers were reported. Seven clusters were identified, reflecting different combinations of changes in the formal/informal care provision. In most countries, informal care is more resilient than home care services that formal providers deliver. Since they are an essential source for sustainable care, their challenges related to care should be addressed. The impact of the pandemic does not follow the traditional characterization of welfare regimes. Conclusions: A clustering effort may yield more understanding of the priorities that future care policies should exhibit at the national level and may identify potential systems for policymakers to enhance sustainability of care for community-dwelling older adults.

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Impact of the covid-19 pandemic on family carers of older people living with dementia in Italy and Hungary

Background: The COVID-19 pandemic has had a major effect on both older people with dementia and families caring for them. Methods: This paper presents the results of an online survey carried out among Italian and Hungarian family carers of people with dementia during the first pandemic wave (May–July 2020, n = 370). The research questions were the following: (1) How has the pandemic changed the lives of family carers? (2) How did government restriction measures change the availability of care-related help? (3) What other changes did families experience? Results: Results show that about one-quarter of both subsamples experienced a deterioration in their financial status. A decline in both general and mental health was also reported. Due to “lockdown”, family carers’ burden increased substantially. Utilization of care-related help decreased, and the share of those left with no help increased in both countries. Cross-country differences emerged in terms of dementia care system, severity of the first pandemic wave, and measures put in place by governments. Findings outline the weaknesses of support structures and their country-specific vulnerabilities to a worldwide pandemic. Conclusions: To better protect people with dementia in the future, it is essential to strengthen their family carers, and support structures need to be re-evaluated and re-designed. 

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Impact of sensitization of family caregivers upon treatment compliance among geriatric patients suffering from elder abuse and neglect

Background: Geriatric patients in various outpatient department (OPDs) have been found to agonize from elder abuse and neglect (EAN). Such suffering imposes depressive states within individuals, which in turn affects treatment compliance. The objective of this study was to evaluate the impact of sensitization (psychotherapeutic) of family caregivers (FCGs) upon two denture treatment parameters (maintenance and treatment satisfaction) among EAN patients and compare the differences in outcome with non-abused patients. Methods: A survey of completely edentulous subjects (n = 860, aged 41–80 years) provided a sampling frame of 332 EAN patients from which 150 patients (including FCGs) fulfilling the study criteria were distributed (simple random, convenient) into two groups (Group A—control, Group B—test). FCG sensitization for subjects in Group B was performed by a clinical psychologist in 2–4 short (30 min) sessions. Demographic characteristics (frequency) were measured using a self-reported questionnaire, denture maintenance was measured using a denture hygiene index (scores), and treatment satisfaction was analyzed on a 10-point visual analog scale. Relevant data were calculated for means and absolute/relative frequencies. Any difference between two groups was estimated using an unpaired t-test while the level of relationship was determined by Karl Pearson’s test at a p-value of < 0.05. Results: The results showed highest frequency (38.6%) for neglect, with elder neglect (EN) being most common (38.14% alone and 14% in combination). EN was found more if the FCG was a son (52%), in the age group (21–30 years), and with low education and low income (75%). Patients whose FCGs were counselled (Group B) demonstrated low denture plaque scores (mean = 1.38 ± 0.618), while demonstrating comparatively higher scores in six different parameters of treatment satisfaction. Differences between the two groups for both parameters were also found to be statistically significant. Conclusions: Psychotherapeutic counselling in the form of FCG sensitization brings better results of denture maintenance and treatment satisfaction. 

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The Impact of Long-Term Care Policy on the Percentage of Older Adults With Disabilities Cared for by Family Members in China: A System Dynamics Simulation

Background: This study examined the impact of current and future long-term care (LTC) policies on the family caregiving burden in China. System dynamics (SD) methodology was used to construct an LTC delivery system model that simulates the demand of LTC, living options, and LTC service use for disabled older adults. Methods: The model was based on three policy variables including the proportion of payment from LTC insurance, the growth rate of beds in LTC institutions, and the time to adjusting the capacity of community-based care. Results: Results showed that the percentage of older adults with disabilities cared for by family members was projected to increase from 92.6% in 2015 to 97.8% in 2035, assuming no policy changes; under the mixed policy scenario, this percentage would reduce significantly to 63.8% in 2035. Conclusions: These findings illustrate that changes in LTC policy and delivery system have a significant impact on family care.

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The Impact of COVID-19 Quarantine on Patients With Dementia and Family Caregivers: A Nation-Wide Survey

Background: Previous studies showed that quarantine for pandemic diseases is associated with several psychological and medical effects. The consequences of quarantine for COVID-19 pandemic in patients with dementia are unknown. We investigated the clinical changes in patients with Alzheimer’s disease and other dementias, and evaluated caregivers’ distress during COVID-19 quarantine. Methods: The study involved 87 Italian Dementia Centers. Patients with Alzheimer’s Disease (AD), Dementia with Lewy Bodies (DLB), Frontotemporal Dementia (FTD), and Vascular Dementia (VD) were eligible for the study. Family caregivers of patients with dementia were interviewed by phone in April 2020, 45 days after quarantine declaration. Main outcomes were patients’ changes in cognitive, behavioral, and motor symptoms. Secondary outcomes were effects on caregivers’ psychological features. Results: 4913 patients (2934 females, 1979 males) fulfilled the inclusion criteria. Caregivers reported a worsening in cognitive functions in 55.1% of patients, mainly in subjects with DLB and AD. Aggravation of behavioral symptoms was observed in 51.9% of patients. In logistic regression analysis, previous physical independence was associated with both cognitive and behavioral worsening (odds ratio 1.85 [95% CI 1.42-2.39], 1.84 [1.43-2.38], respectively). On the contrary, pandemic awareness was a protective factor for the worsening of cognitive and behavioral symptoms (odds ratio 0.74 [0.65-0.85]; and 0.72 [0.63-0.82], respectively). Approximately 25.9% of patients showed the onset of new behavioral symptoms. A worsening in motor function was reported by 36.7% of patients. Finally, caregivers reported a high increase in anxiety, depression, and distress. Conclusions: Our study shows that quarantine for COVID-19 is associated with an acute worsening of clinical symptoms in patients with dementia as well as increase of caregivers’ burden. Our findings emphasize the importance to implement new strategies to mitigate the effects of quarantine in patients with dementia.

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The Impact of Dementia Daycare Service Cessation Due To COVID-19 Pandemic

Objectives: This study aimed at revealing the caregiving challenges of the caregivers of people with dementia (PwD) during the COVID-19 pandemic when daycare service was stopped as an infection control measure, and discussed ways to help PwD and their family caregivers to maintain their well-being in the era of the pandemic. Methods: Between April and May 2020, a cross-sectional survey was conducted in 152 family caregivers of PwD who were clients of daycare service prior to the pandemic. The survey examined caregivers’ stress and challenges faced during daycare service cessation, their perceived needs for continuation of daycare service, and observed changes in functional status of PwD. Regression analyses were performed to explore the associated factors of caregiving stress and preference for continuation of daycare service. Results: Family caregivers of PwD experienced greater caregiving stress after cessation of daycare service. Infection was their main challenge in caregiving, and their physical and emotional health was adversely affected by the longer time commitment with PwD under the stay-home policy. Older age of caregivers, greater emotional and communication problems of PwD, and more time spent with PwD were associated with greater caregiving stress. More than one-third of the participants preferred the continuation of daycare service during the pandemic. Conclusions: Policy makers should consider the well-being of PwD and their caregivers when planning infection control measures. Daycare service with enhanced infection controlled measures should remain available to PwD during the COVID-19 pandemic.

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Impact of COVID-19 on the Health and Well-being of Informal Caregivers of People with Dementia: A Rapid Systematic Review

Background: In December 2019, the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), or COVID-19, raised worldwide concern. Since then, the COVID-19 pandemic has negatively influenced health and wellness across the globe and caused nearly three million deaths. This study focuses on informal caregivers of people with dementia, a disease that affects about 50 million older adults worldwide and requires much caregiving support. Objective: Examine the current literature on the impact of COVID-19 on the health and well-being of informal caregivers for people with dementia. Method: This rapid review was conducted across five electronic databases for quantitative and qualitative articles published through March 15, 2021. Results: The 10 studies included in this review reported quantitative descriptive data from across the globe; however, no studies existed from the U.S. or East Asia countries. All of the studies examined the psychological rather than physical impact of COVID-19 and highlighted risk and protective factors in the areas of psychosocial (resilience, neuropsychiatric, and social isolation), sociodemographic (gender and education), and environmental (home confinement, living arrangement, and dementia stage). Conclusion: COVID-19 has had a considerable negative impact on the psychological well-being of informal caregivers of people with dementia, namely causing more depression and anxiety than pre-pandemic. 

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Impact of Alzheimer’s Dementia on Caregivers and Quality Improvement through Art and Music Therapy

Background: Dementia is a general term for a series of medical conditions that affect the brain and evolve progressively. According to the literature, there are over 200 subtypes and causes of dementia, with Alzheimer’s disease (AD) being the most common in elderly people. AD is an irreversible progressive neurodegenerative condition that leads to a decline in mental function, enough to disrupt daily life. Thinking skills slowly deteriorate, which, in advanced stages, makes it impossible to perform simple tasks. Besides the change in the quality of life of AD patients and their families, there is a considerable alteration in the quality of life of their caregivers, whose health can be negatively affected by the development of mental and somatic disorders. Methods: This article reviews the literature in order to reveal the benefits of applying non-pharmacological interventions such as music and art therapy to improve quality of life. This article also aims to shed light on the impact of this disease on the caregiver’s life. Findings: Music and art therapy have produced reliable results in the treatment of patients with AD, and the best effects are related to increased socialization and the maintenance of social status.

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“It’s Like Juggling, Constantly Trying to Keep All Balls in the Air”: A Qualitative Study of the Support Needs of Working Caregivers Taking Care of Older Adults

Background: Many informal caregivers of older adults combine their caregiving tasks with a paid job. Adequate support is important to enable them to combine paid work with caregiving, while maintaining their health and wellbeing. To date, however, knowledge about working caregivers’ support needs is fragmented. This study, therefore, aimed to obtain more insight into the support needs of working caregivers of older adults. Methods: We conducted six online semi-structured focus group interviews with in total 25 working caregivers of older adults living at home. Data were complemented with information from seven working caregivers participating in the study’s advisory board. Data were analyzed using inductive and deductive thematic analysis. Findings: Six themes related to working caregivers’ needs were identified: (1) Recognition of caregivers, including the challenges they face; (2) Attention for caregivers’ health, wellbeing and ability to cope; (3) Opportunities to share care responsibilities; (4) Help with finding and arranging care and support; (5) Understanding and support from the work environment; (6) Technological support tailored to the needs and capacities of caregivers and older adults. To address these needs, working caregivers suggested several options in multiple domains of life (i.e., work, home and social life, care environment, personal health and wellbeing). Conclusions: To successfully support them, a multi-faceted effort, involving actors from multiple settings, is needed.

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'I want to make myself useful': the value of nature-based adult day services in urban areas for people with dementia and their family carers

Background: Nature-based adult day services (ADSs) in urban areas are relatively new services in the Netherlands. Since knowledge about these services is still scarce, this study aimed to elucidate their value for people with dementia and their family carers in terms of health and wellbeing. Methods: We interviewed 39 people with dementia attending nature-based ADSs in urban areas and their family carers, and 17 providers of these services. Results: Respondents indicated that nature-based ADSs in urban areas positively affected the health and wellbeing of people with dementia. According to them, these services support contact with nature and animals, activity engagement, physical activity, structure, social interactions, healthy eating, a sense of meaning in life and a focus on normal daily life. Respondents further indicated that these services stimulate respite, reassurance and maintenance of family carers' own activities and social contacts. Conclusions: We conclude that nature-based ADSs in urban areas have a wide range of benefits that might affect the health and wellbeing of people with dementia and their family carers. Worldwide, demand is growing for innovative practices in dementia care. It is therefore worthwhile monitoring the development of dementia care innovations, such as nature-based ADSs, and for countries to exchange lessons learned from these services.

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'I try my best ... I try to relieve the burden of my mum': a narrative analysis of the everyday care-giving experiences for five intergenerational Singapore-Chinese families where one member has dementia

Background: Singapore is experiencing a rapid growth in its ageing population with most of the islands' inhabitants living in high-rise apartments due to the scarcity of land. The Chinese community living in Singapore comprises the largest ethnic group and they are more likely to live together under one roof in an intergenerational family grouping. Currently, there are gaps in understanding intergenerational Singapore-Chinese families and their approach to caring at home for a family member with dementia. Objectives: The aim of this longitudinal qualitative study was to understand better this everyday care-giving experience. Methods: Using semi-structured biographical interviews and digital photographs to elicit family stories, five intergenerational Singapore-Chinese families were visited at home for a period of between six and 15 months. Each recruited intergenerational family was treated as a 'case'. Narrative analysis of the data was applied within and between cases and resulted in the emergence of three themes that represented various dynamics in the data. Findings: The three themes were identified as: (1) family values, which is about the cultural context in which everyday care takes place, the religious beliefs and practices of the intergenerational Singapore-Chinese families, and the practice of filial piety; (2) family support, which is about everyday access to family and service networks, including the contribution of the live-in maid in caring for the family member with dementia; and (3) family bonds, which is about the maintenance of intergenerational family relations in the Chinese family kinship system.

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I heard it on the radio: supporting Pacific family carers through the development of culturally appropriate resources, a descriptive qualitative study

Background: New public health approaches to palliative care highlight the role of communities in care, yet there is little evidence of studies on community-led initiatives in the palliative care context. Objectives: Therefore, the aim of this study, which took place in Auckland, New Zealand, was to (1) explore Pacific family carers' views on what they need to feel supported as they care for older family members at the end of life and (2) to devise a resource that reflects their views that may be used to raise community awareness about these needs. Methods: This was achieved using a Participatory Action Research (PAR) framework in which a focus group was carried out and a work group formed to implement the focus group's recommendations that were informed by a thematic analysis of the focus group data. Findings: The analysis resulted in the foregrounding of four themes, with the focus of this paper being on the 4th theme, the centrality of spirituality for a group of Pacific caregivers. This emphasis was chosen due to it being an underexplored topic in the palliative care literature. Co-creating resources based on research with community members allows for the development of tailored approaches of significance to that community, in this instance, a music video.

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“I Could Not Manage This Long-Term, Absolutely Not.” Aging in Place, Informal Care, COVID-19, and the Neighborhood in Flanders (Belgium)

Background: Public health and care policies across OECD (Organisation for Economic Co-operation and Development) countries increasingly encourage aging in place, enabled by both formal care networks, and informal (family) care and social solidarity in the neighborhood. However, little is known about how a person’s neighborhood might affect their aging in place. The COVID-19 crisis unintendedly offered a good opportunity to observe the neighborhood’s role in the provision of care. Since formal care services were often limited during the lockdown, informal caregiving may have increased. However, intergenerational contacts in and outside of the household were strongly discouraged by governments worldwide, adding another layer of complexity to caregiving. Objectives: The aim of this qualitative study was to assess how informal caregivers in Flanders managed to provide care to their care receivers, and what role the neighborhood played in this provision of care. Methods: Sixteen qualitative Skype and telephone interviews with informal caregivers were conducted between June and December 2020 to understand their experiences and coping strategies. Findings: Overall, most respondents increased their frequency of caregiving during the first lockdown. They took on the extra care needs during the lockdown themselves, and did not actively invoke any kind of neighborhood support. The significance of the neighborhood seemingly remained limited. This was often not because no help was offered, but rather due to a sense of pride or the fear of infection, and an increased effort by family caregivers. 

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Health service experiences and preferences of frail home care clients and their family and friend caregivers during the COVID-19 pandemic

Objective: The COVID-19 pandemic has brought about a major upheaval in the lives of older adults and their family/friend caregivers, including those utilizing home care services. In this article, we focus on results from a qualitative component added to a pragmatic randomized controlled trial that focuses on the experiences of our study participants during COVID-19. Methods: A total of 29 participants responded to the COVID-19 related questions focused on their health services experiences and preferences from March-June 2020 including 10 home care clients and 19 family/friend caregivers in the provinces of Ontario and Nova Scotia, Canada. Results: Many participants were affected drastically by the elimination or reduction of access to services, highlighting the vulnerability of home care clients and their caregivers during COVID-19. This took an emotional toll on home care clients and increased the need for family/friend caregiver support. While many participants expressed reduced desire to utilize residential long-term care homes, some caregivers found that passive remote monitoring technology was particularly useful within the COVID-19 context. Conclusions: Our results provide important insights into the ways the older adults and their caregivers have been affected during the COVID-19 context and how to better support them in the future.

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Health Promotion Behavior among Older Korean Family Caregivers of People with Dementia

Background: People adopt health promotion behaviors to promote their health as they interact within the environment. Objective: The purpose of this study was to examine factors influencing health promotion behaviors among older adults caring for family members with dementia. Methods: For this cross-sectional study, data from 135 older adults who were the main caregivers were collected at an outpatient clinic at a university hospital in the capital city of South Korea between September and October in 2020. Sociodemographic characteristics, caregiver-related characteristics, dementia knowledge, fear of dementia, and health promotion behaviors were measured. Results: Univariate analysis revealed that the level of health promotion behaviors differed by age, sex, educational level, monthly income, relationship with the family member with dementia, and cohabitation with family members with dementia. In the multivariate analysis, a hierarchical multiple regression model explained 33.9% of the variance. Sex, duration of caregiving, use of long-term care service, and fear of dementia predicted health promotion behavior. Conclusion: A strategic tailored care plan for target population is needed to improve the health promotion behavior of older adults caring for family members with dementia.

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Grieves And Struggles Of Family Caregivers Providing Care For Bedridden Elderly Patients Affected By Chronic Degenerative Diseases

Objective: To understand grieves and struggles of family caregivers providing care for bedridden elderly patients affected by chronic degenerative diseases. Methods: This cross-sectional study was developed following the guidelines of the clinical-qualitative method. The sample was composed of 10 female family caregivers of bedridden elderly patients affected by chronic degenerative diseases in a city in the interior of Minas Gerais, Brazil. The sample size was determined by data saturation. The instruments used included semi-structured interviews and a field diary. The audio-recorded interviews were transcribed verbatim and submitted to content analysis. The field diary provided contributions to the organization of categories, conferring a more accurate context. Results: The participants experienced two types of grief, one for the loss of a “healthy family member” and the other for the “announced death” of this person. Additionally, the participants faced two main struggles: overcoming (objective and subjective) fatigue and becoming fully capable of performing their roles. Conclusion: The family caregivers of bedridden elderly patients affected by chronic degenerative diseases experience grieves and struggles that should be taken into account from the beginning of the care process through mental health actions intended to meet their needs. 

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Getting back or giving back: understanding caregiver motivations and willingness to provide informal care

Background: Informal caregivers are those providing care, which exceeds that which is typically provided, to a relative or friend with care needs. Informal caregiving constitutes the backbone of a society’s care supply and with ageing populations the need for informal care is growing. We know little as to why caregivers start caring and continue doing so, yet understanding of motivations and willingness to provide care is important if informal caregivers are to be supported. However, both motivations and willingness are inconsistently defined making it difficult to compare the empirical findings that do exist. Methods: This paper reviews and synthesises thinking about the theoretical constructs of motivations to provide care and willingness to perform informal care, and presents those in relation to existing theoretical and empirical literature. Results and Conclusions: Theoretical reflections based on various motivational frameworks and available empirical data are presented to illustrate that: caregiving motivations should be conceptualised as multifaceted and multiply determined; intrinsic and extrinsic motivations should not be treated as antagonistic and can occur simultaneously; the commonly applied model of extrinsic/intrinsic motivations is oversimplified and omits consideration of the diversity of caregiver motives; other motivational models can be discerned in the context of the empirical research; there are differences between motivations and willingness to provide care with the latter being more consequent to the motives; both should be considered dynamic in nature; and finally, that the two constructs may not inevitably lead to actual caregiver behaviour. The implications of these theoretical reflections for methodology and research as well as their relevance for practice and policy are indicated. 

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Gendered experiences of providing informal care for older people: a systematic review and thematic synthesis

Background and purpose: The caregiving’s impact on informal carers’ quality of life and gender-based stereotypes make older individuals’ informal care a complex process for which our knowledge is still limited. The purpose of this review is to identify how gender relates to informal carers’ experiences of providing care for people aged 60 years and over with mental and physical health needs by synthesising the available empirical data published between 2000 to 2020. Design and methods: The systematic method for reviewing and synthesising qualitative data was performed using the PRISMA checklist and ENTREQ statement. The CASP tool was used to examine the quality of the included papers. Thematic synthesis was used as the methodological framework. Results: This review produced two analytical themes, the impact of gender on the caregivers’ labour and negotiating gender identity with self, society, and cultural norms. While informal caregivers share motivators, a linkage between traditional gender stereotypes impacts caregiving burden and coping strategies. Informal carers’ experiences entail a constant pursuit of self-agency after acquiring the caregiver role. Cultural values and their intersection with gender appear to influence caregivers’ healthy adjustment into their new caregiving identities. The flexibility to move beyond gender boundaries could mediate caregivers’ negotiations between self and society on developing their new caregiving identity. Providing intensive informal primary care to older people affects both men’s and women’s mental and physical health. Gender ideals of the feminine nurturing role further disadvantage women as they determine the caregiving arrangements, the strategies and resources to sustain the caring burden, and the adaptability to experience their new caregiving role positively. Men appear more flexible to debate their hegemonic masculinity and defend their existence in the caregiving role. Conclusion and implications: Transgressing gender lines and expanding gender possibilities can ease the caregiving burden and strengthen caregivers coping potentials. Health professionals can empower informal careers to challenge gender binaries and expand gender possibilities by intentionally injecting the language of diversity in caring information and caring processes. The review findings outline a path for research on gender identity development in older people’s care.

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Gendered experiences of providing informal care for older people: a systematic review and thematic synthesis

Background and purpose: The caregiving’s impact on informal carers’ quality of life and gender-based stereotypes make older individuals’ informal care a complex process for which our knowledge is still limited. The purpose of this review is to identify how gender relates to informal carers’ experiences of providing care for people aged 60 years and over with mental and physical health needs by synthesising the available empirical data published between 2000 to 2020. Design and methods: The systematic method for reviewing and synthesising qualitative data was performed using the PRISMA checklist and ENTREQ statement. The CASP tool was used to examine the quality of the included papers. Thematic synthesis was used as the methodological framework. Results: This review produced two analytical themes, the impact of gender on the caregivers’ labour and negotiating gender identity with self, society, and cultural norms. While informal caregivers share motivators, a linkage between traditional gender stereotypes impacts caregiving burden and coping strategies. Informal carers’ experiences entail a constant pursuit of self-agency after acquiring the caregiver role. Cultural values and their intersection with gender appear to influence caregivers’ healthy adjustment into their new caregiving identities. The flexibility to move beyond gender boundaries could mediate caregivers’ negotiations between self and society on developing their new caregiving identity. Providing intensive informal primary care to older people affects both men’s and women’s mental and physical health. Gender ideals of the feminine nurturing role further disadvantage women as they determine the caregiving arrangements, the strategies and resources to sustain the caring burden, and the adaptability to experience their new caregiving role positively. Men appear more flexible to debate their hegemonic masculinity and defend their existence in the caregiving role. Conclusion and implications: Transgressing gender lines and expanding gender possibilities can ease the caregiving burden and strengthen caregivers coping potentials. Health professionals can empower informal careers to challenge gender binaries and expand gender possibilities by intentionally injecting the language of diversity in caring information and caring processes. The review findings outline a path for research on gender identity development in older people’s care.

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Gendered caregiving and structural constraints: An empirical ethical study

Background: The pressing issue of aged care has made gendered caregiving a growing subject of feminist bioethical enquiry. However, the impact of feminism on empirical studies in the area of gendered care in Chinese sociocultural contexts has been less influential. Objectives: To examine female members’ lived experiences of gendered care in rural China and offer proper normative evaluation based on their experiences. Research design: This article adopted an empirical ethical approach that integrates ethnographical investigation and feminist ethical inquiry. This article focused on three cases of gendered caregiving for sick older members collected from a 6-month fieldwork conducted in a primary hospital in rural China.  Approval was obtained from the university ethics committee. Findings: The empirical work highlights caregivers’ voices of weiqu (a sense of unfairness) resulting from their constrained choice when being pressured to engage in caregiving, which is associated with a disadvantageous socio-institutional and structural backdrop in current rural China. Informed by the conception of structural injustice, the normative analysis of this article traced various forms of social norms, structural deficiencies and ageing welfare institutions, as they intertwine and transmit into additional care deficiencies against rural families and their female caregivers. Conclusion: This article identified the constraint of gender hierarchy and its intersection with external social structure that exacerbate gendered oppression and exploitation of female labour in rural China. Normatively, this article argues that the current configuration of rural family care, featured by structural impediments and exploration of female labour, is unjust. Some policy recommendations are proposed to empower caregivers and advance care for rural older people.

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Gender Differences in Caregiver Burden Among Family Caregivers of Persons With Dementia

Objectives: The current study aimed to identify gender-dependent factors that influence caregiver burden among family caregivers of persons with dementia through secondary data analysis. Methods: We used a nationally representative survey of 379 family caregivers of persons with dementia completed in 2014. We examined factors affecting the burden experience of male and female caregivers, guided by the stress process model, using hierarchical regression. Results: The analytic sample included 159 males (42%) and 220 females (58%). For males, age of care recipient, being an adult child, social support, instrumental activities of daily living performed, and caregiving impact on caregivers' health influenced burden. For females, co-residence, social support, caregivers' current health, and caregiving impact on caregivers' health impacted burden. Conclusions: Understanding gender differences related to caregiving burden is beneficial for developing effective targeted interventions that support the caregiving role and improve the quality of life of caregivers. 

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Formal and Informal Care: Complementary or Substitutes in Care for Elderly People? Empirical Evidence From China

Background: To integrate the care resources of the elderly, while promoting the development of formal social care resources, some countries have gradually turned to the development of family informal care resources. In China, informal family care has a more important role, whereas social formal care resources are far from meeting the needs of older people. Thus, this strategy can only be effective if there is a clear complementary relationship between informal care and formal care. Methods: Empirical analysis is selected from the China Health and Nutrition Survey (CHNS) database, which conducted 10 follow-up surveys in 12 provinces and municipalities in China. A two-tier stochastic frontier (TSFA) model was used to analyze the relationship between three different kinds of formal care and informal family care. Results: The formal complementary and substitute effects on informal care eventually led to higher actual informal care level. The net effect of formal care on informal care is positive, and the complementary effects of formal care are still dominant even in different regions. Conclusions: Increasing informal care does not crowd out or reduce formal care; thereby, facilitating the return of care to families can effectively reduce public service expenditures. 

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Financial strain among unpaid family caregivers of frail elders in community

Background: In the United States, 8 out of 10 elders, 65 or older, have at least one chronic disease. Their care likely falls mostly to family members; many experience financial strain associated with providing that care. Informal caregiving saves the American healthcare system money. The economic value of family caregivers is estimated at $350 billion, exceeding the total amount spent by either Medicare ($342 billion) or Medicaid ($300 billion) The COVID-19 pandemic makes this issue even more relevant. Many of those recovering from this virus, whatever their age and previous health history, find it is a very long process. This study examined correlates of financial strain among 956 unpaid family caregivers using the framework of the stress process model. Method: The study utilized the caregiver survey data set from the 1999 National Long-Term Care Survey. Results: indicate that a caregiver's perceived overload had the largest effect on greater financial strain. Variations and dynamics in caregiver financial strain are particular to the caregiver's family relationship. Conclusion: Identifying correlates of caregiver financial strain can provide an important impetus for tackling the causes and providing effective interventions.

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Features of primary care practice influence emergency care-seeking behaviors by caregivers of persons with dementia: A multiple-perspective qualitative study

Background: Persons with dementia use emergency department services at rates greater than other older adults. Despite risks associated with emergency department use, persons with dementia and their caregivers often seek emergency services to address needs and symptoms that could be managed within primary care settings. As emergency departments (EDs) are typically sub-optimal environments for addressing dementia-related health issues, facilitating effective primary care provision is critical to reduce the need for, or decision to seek, emergency services. The aim of this study is to explore how features of primary care practice influence care-seeking decisions by community-dwelling persons with dementia and familial caregivers. Methods: Semi-structured qualitative interviews were conducted with 27 key dementia-care stakeholders (10 primary care/geriatrics providers, 5 caregivers, 4 emergency medicine physicians, 5 aging service providers, and 3 community paramedics) from multiple health systems. Transcripts from audio recordings were analyzed using a thematic analysis framework to iteratively code and develop emergent themes. Features of primary care were also synthesized into lists of tangible factors leading to emergency care-seeking and those that help prevent (or decrease the need for) ED use. Findings: Stakeholders identified eight categories of features of primary care encompassing the clinical environment and provision of care. These collapsed into four major themes: (1) clinic and organizational features—including clinic structure and care team staffing; (2) emphasizing proactive approaches to anticipate needs and avoid acute problems—including establishing goals of care, preparing for the future, developing provider–patient/provider–caregiver relationships, and providing caregiver support, education, and resources to help prevent emergencies; (3) health care provider skills and knowledge of dementia—including training and diagnostic capabilities; and (4) engaging appropriate community services/resources to address evolving needs. Conclusions: Features of primary care practice influence decisions to seek emergency department care at the system, organizational/clinic, medical, and interpersonal levels, particularly regarding proactive and reactive approaches to addressing dementia-related needs. Interventions for improving primary care for persons with dementia and their caregivers should consider incorporating features that facilitate proactive family-centered dementia care across the four identified themes, and minimize those leading to caregiver decisions to utilize emergency services.

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The fear of falls in the caregivers of institutionalized elders

Aims: To understand how the fear of falls emerges and manifests itself in caregivers of institutionalized elders. Methods: It is a qualitative study, based on the Grounded Theory and carried out with 24 informal caregivers, 5 nurses, 2 physicians and 2 directors of two Portuguese nursing homes. Data collection took place through interviews, participant observation, and documentation analysis, between October 2016 and January 2018. Data was collected and analyzed simultaneously, following the stages of open, axial, and selective coding. Results: The comparative analysis of the findings identified the conceptual category "Fear of falls in the caregivers of institutionalized elders". The main category is associated with the categories: maintaining safety, hidden fear of falls, the perceived self-efficacy in the prevention of falls, falls and interpersonal relations, previous experiences, and team support. Conclusions: The fear has an influence on the self-efficacy perceived in the prevention of falls; the quality of the teamwork, in turn, is affected by previous negative experiences and by the support of the team.

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Family-oriented interventions in long-term care residential settings: a scoping review protocol

Objectives: The objective of this review will be to identify the characteristics (eg, type, duration, and provider) of family-oriented interventions in long-term care residential settings. The authors will also identify which outcomes are reported in the literature when implementing family-oriented interventions. Introduction: An array of family-oriented interventions in long-term care residential settings exist. Given the heterogeneity of current literature, mapping characteristics and intended outcomes of family-oriented interventions is an essential step to inform how best to support families of patients in long-term care residential settings. Inclusion criteria: This review will consider studies describing family-oriented interventions for families of elderly patients in long-term care residential settings, with no exclusion based on country, gender, or comorbidities. Interventions that address any family-related issue, such as quality of life, psychological burden, and family involvement in patient care, are eligible for inclusion. Studies will be excluded if the patients are cared for at their own homes or institutionalized care is provided on a temporary basis. Quantitative, qualitative, and mixed method study designs will be considered for inclusion. Methods: A scoping review will be conducted using the JBI methodological approach. Seven databases will be systematically searched: MEDLINE, CINAHL, Scopus, Evidence-Based Medicine Reviews including Cochrane Library, PsycINFO, OpenGrey, and the Grey Literature Report. Citations will be screened against the inclusion criteria by two reviewers independently. Relevant data will be extracted from the included studies, and will be synthesized, summarized, and reported following the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews. Findings will be published in a peer-reviewed journal.

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Family relations of older people: Personal and practical support

Summary: In this study, we examined older people's views and experiences of family relations in Iceland. Objectives: The goal was to explore the frequency and kinds of contact, and the support older people received from their adult biological children and stepchildren. Methods: We performed cluster sampling covering community centers in municipalities nationwide in Iceland. The questionnaire was answered by 273 older people, including 193 women (75%) and 64 men (25%). The average age was 79 years. About 200 (74%) lived in the capital area of Reykjavik, while 70 (26%) lived in the countryside. Findings: Older people received more support from biological children than stepchildren. Specifically, differences were found in both frequency and quality of contact. The results revealed gender differences; daughters offering more help and support than sons. Older women have more frequent contact and closer relationships with their biological children than with other children. Relationships with stepchildren were weaker in all respects. These results are discussed in connection to structural and cultural factors, with a focus on the implications of changes in family structure, new communication styles, and effects of media. Applications: Although the increased frequencies of divorce and stepparenting can affect connections within families, communities commonly disregard the different needs of stepfamilies, sometimes called "stepblindness". Policy makers and professionals such as social workers need to concede different needs of older people in stepfamilies. Conclusions: Conclusions are drawn from the perspective of welfare policy issues, such as the need of more precise law provisions and implementations on social services for families.

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Family experiences of caregiving to patients with Alzheimer

Purpose: This paper aims to describe and understand the family experience of caregiving to their Alzheimer patients and to explore the impact of caregiving on the family's caregiver well-being. Design/methodology/approach: The study involved eight family caregivers from the outpatient department, specifically from the neurology-medical clinic. A descriptive phenomenological approach was used for data collection through in-depth semi-structured interviews. Findings: Four themes emerged: caregiver perception, tension, the sense of duty and commitment and altruism and sacrifice. The experience of family caregivers was different from their experiences with other chronic illnesses. Originality/value: The family caregivers experience new life when providing care to their patients with Alzheimer's. The impact of the process of caregiving on whole life appeared in both positive and negative aspects. The perception and awareness of family caregivers toward Alzheimer's disease were poor.

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Family Caregiving During the COVID-19 Pandemic

Background and Objectives: The coronavirus disease 2019 (COVID-19) pandemic has negatively affected persons with existing chronic health conditions. The pandemic also has the potential to exacerbate the stresses of family caregiving. We compare family caregivers with noncaregivers on physical, psychosocial, and financial well-being outcomes during the pandemic and determine family caregivers most at risk for adverse outcomes. Research Design and Methods: We conducted a cross-sectional online survey of 576 family caregivers and 2,933 noncaregivers from April to May 2020 in Pittsburgh, PA region with a national supplement. Outcome measures included concurrent anxiety, depression, fatigue, sleep disturbance, social participation, and financial well-being and perceived changes due to COVID-19 (loneliness, financial well-being, food security). We also measured sociodemographic, caregiving contextual variables, and COVID-19-related caregiver stressors (COVID Caregiver Risk Index). Results: Controlling for sociodemographics, family caregivers reported higher anxiety, depression, fatigue, sleep disturbance, lower social participation, lower financial well-being, increased food insecurity (all p <.01), and increased financial worries (p =.01). Caregivers who reported more COVID-19-related caregiver stressors and disruptions reported more adverse outcomes (all p <.01). In addition, caregivers who were female, younger, lower income, providing both personal/medical care, and providing care for cognitive/behavioral/emotional problems reported more adverse outcomes. Discussion and Implications: Challenges of caregiving are exacerbated by the COVID-19 pandemic. Family caregivers reported increased duties, burdens, and resulting adverse health, psychosocial, and financial outcomes. Results were generally consistent with caregiver stress–health process models. Family caregivers should receive increased support during this serious public health crisis.

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Family Caregiving and Place of Death: Insights From Cross-national Analysis of the Harmonized End-of-Life Data

Objectives: Family is largely overlooked in research on factors associated with place of death among older adults. We determine if family caregiving at the end of life is associated with place of death in the United States and Europe. Method: We use the Harmonized End of Life data sets developed by the Gateway to Global Aging Data for the Survey of Health, Ageing and Retirement in Europe (SHARE) and the Health and Retirement Study (HRS). We conducted multinomial logistic regression on 7,113 decedents from 18 European countries and 3,031 decedents from the United States to determine if family caregiving, defined based on assistance with activities of daily living, was associated with death at home versus at a hospital or nursing home. Results: Family caregiving was associated with reduced odds of dying in a hospital and nursing home, relative to dying at home in both the United States and Europe. Care from a spouse/partner or child/grandchild was both more common and more strongly associated with place of death than care from other relatives. Associations between family caregiving and place of death were generally consistent across European welfare regimes. Discussion: This cross-national examination of family caregiving indicates that family-based support is universally important in determining where older adults die. In both the United States and in Europe, most care provided during a long-term illness or disability is provided by family caregivers, and it is clear families exert tremendous influence on place of death.

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Family caregivers' perceived level of collaboration with hospital nurses: A cross‐sectional study

Aim: To describe the extent of perceived collaboration between family caregivers of older persons and hospital nurses. Background: Collaboration between hospital nurses and family caregivers is of increasing importance in older patient's care. Research lacks a specific focus on family caregiver's collaboration with nurses. Method: Using a cross‐sectional design, 302 caregivers of older patients (≥70 years) completed the 20‐item Family Collaboration Scale with the subscales: trust in nursing care, accessible nurse and influence on decisions. Data were analysed with descriptive statistics and bivariate correlations. Results: Family caregivers rated their level of trust in nurses and nurses' accessibility higher than the level of their influence on decisions. Family caregivers who had more contact with nurses perceived higher levels of influence on decisions (p ≤ .001) and overall collaboration (p ≤ .001). Conclusion: Family caregivers' collaboration with nurses can be improved, especially in recognizing and exploiting family caregivers as partner in the care for older hospitalized persons and regarding their level of influence on decisions. Implications for Nursing Management: Insight into family caregivers' collaboration with nurses will help nurse managers to jointly develop policy with nurses on how to organise more family caregivers' involvement in the standard care for older persons.

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Family caregivers' experiences of interaction with people with mild‐to‐moderate dementia in China: A qualitative study

Aim: This study aimed to explore the experiences of family caregivers interacting with people with dementia. Background: A majority of people with mild‐to‐moderate dementia live at home with family caregivers. This interaction creates positive experiences and challenges for these caregivers. Design: Descriptive phenomenological qualitative inquiry guided this study. Methods: This qualitative study involved semi‐structured interviews with the caregivers of people with mild‐to‐moderate dementia (n = 10). Data were collected from June to September 2018, and then data were thematically analysed. Results: Six categories of themes were identified from the interviews: (1) unexpected things often happen; (2) positive coping strategies; (3) sense of accomplishment because people with dementia actively participate in activities; (4) sense of frustration because of the reluctance of people with dementia to participate in activities; (5) hope for the happiness of people with dementia; and (6) want to have their own life. Conclusions: This study reveals that caregivers could positively interact with people with dementia through creating opportunities and arranging meaningful activities. Future research should focus on family management and training on how to help caregivers interact effectively with people with dementia. 

 

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Family Caregivers' Experiences and Changes in Caregiving Tasks During the COVID-19 Pandemic

Objectives: The purpose of this descriptive study was to describe family caregivers' experiences and changes in caregiving tasks and approaches during the COVID-19 pandemic. Methods: Using web-based strategies, 69 family caregivers of adults with chronic or disabling conditions were recruited and completed an online survey about positive and negative caregiving experiences, and ways in which caregiving has changed. Data were analyzed using descriptive statistics (structured questions) and conventional content analysis (open-ended responses). Results: Participants reported concerns about their loved one's physical and mental health, the limited access to other caregiving sources, and the limited opportunities to maintain personal well-being. Caregiving tasks completed more than usual included providing emotional support, shopping for groceries and essentials, and contacting healthcare providers. Participants modified their caregiving approach by assuming added responsibilities, leveraging technology, and managing a new caregiving routine. Conclusions: Findings indicate that family caregivers experienced additional caregiving challenges and changed caregiving tasks considering the limited resources available.

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Family Caregivers' Conceptions of Trust in Home Health Care Providers

Background: Trust is important to family caregivers of older adults receiving home health care (HHC). Caregivers rely extensively on nurses, home health aides, and other providers to manage complex care tasks. Objective: The current study examined how family caregivers conceive of trust in HHC providers. Methods: Directed content analysis methods were applied to 40 qualitative interviews conducted with caregivers of HHC patients aged ≥65 years. Results: Results indicated that caregivers invested trust in providers who displayed competencies in caring for patients with chronic conditions and functional difficulties, willingness to foster frequent and open communication with room for questions and feedback, confidence in their ability to be present and alert for patients, and fidelity to a variety of tasks contributing to holistic care. Conclusions: Caregivers' conceptions of trust in providers are affected by interpersonal aspects of their interactions with providers as well as the broader systems of care within which they participate. 

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Family Caregiver Needs and Preferences for Virtual Training to Manage Behavioral and Psychological Symptoms of Dementia: Interview Study

Background: Behavioral and psychological symptoms of dementia (BPSD) are associated with increased stress, burden, and depression among family caregivers of people with dementia. STAR-Caregivers Virtual Training and Follow-up (STAR-VTF) is adapted from an evidence-based, in-person program that trains family caregivers to manage BPSD. We used a human-centered design approach to obtain feedback from family caregivers about STAR-VTF. The program will be evaluated using a pragmatic randomized trial. Objective: The objective of the study was to understand the needs of family caregivers for improving BPSD management and the extent to which caregivers perceived that STAR-VTF could address those needs. Methods: Between July and September 2019, we conducted 15 semistructured interviews with family caregivers of people with dementia who receive care at Kaiser Permanente Washington in the Seattle metropolitan area. We identified participants from electronic health records, primarily based on a prescription for antipsychotic medication for the person with dementia (a proxy for caregivers dealing with BPSD). We showed caregivers low-fidelity prototypes of STAR-VTF online self-directed materials and verbally described potential design elements. We obtained caregiver feedback on these elements, focusing on their needs and preferences and perceived barriers to using STAR-VTF. We used a hybrid approach of inductive and deductive coding and aggregated codes to develop themes. Results: The idea of a virtual training program for learning to manage BPSD appealed to caregivers. They said health care providers did not provide adequate education in the early disease stages about the personality and behavior symptoms that can affect people with dementia. Caregivers found it unexpected and frustrating when the person with dementia began experiencing BPSD, symptoms they felt unprepared to manage. Accordingly, caregivers expressed a strong desire for the health care organization to offer programs such as STAR-VTF much sooner. Caregivers had already put considerable effort into problem solving challenging behaviors. They anticipated deriving less value from STAR-VTF at that point. Nonetheless, many were interested in the virtual aspect of the training due to the convenience of receiving help from home and the perception that help from a virtual program would be timelier than traditional service modalities (eg, face to face). Given caregivers’ limited time, they suggested dividing the STAR-VTF content into chunks to review as time permitted. Caregivers were interested in having a STAR-VTF provider for additional support in managing challenging behaviors. Caregivers reported a preference for having the same coach for the program duration. Conclusions: Caregivers we interviewed would likely accept a virtual training program such as STAR-VTF to obtain information about BPSD and receive help managing it. Family caregivers anticipated deriving more value if STAR-VTF was offered earlier in the disease course.

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Family Care Availability And Implications For Informal And Formal Care Used By Adults With Dementia In The US

Background: Despite the important role that family members can play in dementia care, little is known about the association between the availability of family members and the type of care, informal (unpaid) or formal (paid), that is actually delivered to older adults with dementia in the US. Results: Using data about older adults with dementia from the Health and Retirement Study, we found significantly lower spousal availability but greater adult child availability among women versus men, non-Hispanic Blacks versus non-Hispanic Whites, and people with lower versus higher socioeconomic status. Adults with dementia and disability who have greater family availability were significantly more likely to receive informal care and less likely to use formal care. In particular, the predicted probability of a community-dwelling adult moving to a nursing home during the subsequent two years was substantially lower for those who had a co-resident adult child (11 percent) compared with those who did not have a co-resident adult child but had at least one adult child living close (20 percent) and with those who have all children living far (23 percent). Conclusions: Health care policies on dementia should consider potential family availability in predicting the type of care that people with dementia will use and the potential disparities in consequences for them and their families.

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Factors related to the use of religious coping by informal caregivers: an integrative review

Objectives: to identify the factors related to the use of religious coping in informal caregivers. Methods: integrative literature review carried out through a search in the databases LILACS, PubMed, Scopus, Web of Science, and CINAHL, in addition to the Virtual Health Library and SciELO. The study selected primary articles in English, Portuguese, and Spanish, using the descriptors Coping Behavior, Caregivers, Spirituality, and Religion, which were combined with each other and with synonyms. There was no time limit for the publications. Results: nine articles were selected. Factors related to the use of religious coping in informal caregivers included: having an advanced age, experiencing traumatic situations, being under overload, being a spouse or mother, caring for hospitalized individuals, or for those with chronic diseases and high degrees of dependence. Conclusions: the factors related to the use of religious coping are multifaceted and involve physical, psychological, psychosocial, and situational aspects.

 

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Factors influencing decisions to admit family members with dementia to long‐term care facilities

Background: With an aging global population and changes in family structure, there will be a need for increased formal and informal caregivers for family members with alzheimer's disease or other related dementias. Caregivers experience exhaustion, mental health issues, and competing demands; deciding to admit family members with dementia into long‐term care compounds the stress. The article reports on factors that influence caregivers' decisions regarding institutionalizing their family members with dementia. Methods: Eighteen articles were included in this integrative review. Findings: Influential decision‐making factors were: caregiver characteristics, care recipient characteristics, complexity of care, caregiver and family relationships, experiences with healthcare providers, financial challenges, and long‐term care facility selection. Addressing these factors can provide a layer of support to caregivers and their families during the decision‐making process.

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Factors associated with caregiving self-efficacy among primary informal caregivers of persons with dementia in Singapore

Background: Informal caregivers of persons with dementia (PWD) are often associated with negative health outcomes. Self-efficacy in dementia caregiving has been reported to have protective effects on caregiver’s health. This study aims to examine the factors associated with the domains of caregiving self-efficacy among informal caregivers in Singapore, a country with a rapidly aging population and a 10% prevalence of dementia among older adults. Methods: Two hundred eighty-two informal caregivers were recruited and data including participant’s caregiving self-efficacy, sociodemographic information, perceived social support, positive aspects of caregiving, knowledge of dementia, as well as behavioral and memory problems of care recipients were collected. A confirmatory factor analysis (CFA) was performed for the 3-factor model of the Revised Scale for Caregiving Self-Efficacy (RSCSE), and multiple linear regressions were conducted using the RSCSE subscales as dependent variables. Results: Our CFA found that the RSCSE 3-factor model proposed by the original scale developer was an acceptable fit among informal caregivers in Singapore. Having established that the 3-factor model of the RSCSE was compatible among our sample, a series of multiple regressions were conducted using each of the factors as a dependent variable. Regressions revealed several factors that were significantly associated with caregiving self-efficacy. Importantly, outlook on life was positively associated to all 3 domains of the RSCSE, while social support was positively associated with self-efficacy in obtaining respite and controlling upsetting thoughts. Conclusion: The 3-factor model of the RSCSE was found to be an appropriate fit for our sample. Findings from this study elucidated important novel insights into the factors that influences caregiving self-efficacy amongst informal caregivers in Singapore. Crucially, caregivers’ outlook on life and social support should be improved in order to enhance their caregiving self-efficacy.

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Exploring resilience in adult daughter and spousal carers of people living with dementia in North West England: an ecological approach

Purpose: Research has shown that informal carers of people living with dementia (PLWD) can be resilient in the face of caregiving challenges. However, little is known about resilience across different kinship ties. This study aims to update and build on our previous work, using an ecological resilience framework to identify and explore the factors that facilitate or hinder resilience across spousal and adult daughter carers of PLWD. Design/methodology/approach: This study conducted in-depth qualitative interviews with a purposive sample of 13 carers from North West England and analysed the data using a constructivist grounded theory approach (Charmaz, 2003). Findings: Adult daughters were motivated to care out of reciprocity, whereas spouses were motivated to care out of marital duty. Spouses had a more positive and accepting attitude towards caregiving and were better able to maintain continuity, which facilitated their resilience. Research limitations/implications: Resilience emerged on multiple levels and depended on the type of kinship tie, which supports an ecological approach to resilience. The implications of these findings are discussed. Originality/value: This paper makes a novel contribution to the literature as it uses an in-depth qualitative methodology to compare resilience across spousal and adult daughter carers of PLWD. This study adopts an ecological approach to identify not just individual-level resilience resources but also interactive community- and societal-level resources. 

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Experiences of family caregivers with day-care centers for elders in Southern China: a qualitative study

Background: With its massive older population, China faces challenges related to elderly support and care. One of the proposed solutions is to diversify elderly support systems. Towards this goal, the establishment of day-care centres is a new Chinese endeavour. Methods: This qualitative study was conducted among the family caregivers of elderly residents enrolled in day-care centres in Shenzhen, a Southern Chinese city, to explore and understand the experiences and factors that might affect family caregivers of frail elders enrolled in day-care centres. Twenty participants were recruited from these centres. Data were collected through in-depth interviews and were analysed via thematic analysis. Findings: The three major themes were: 'I am a traditional person': the impacts of ren and xiao, 'caring made me tired': mobility and environment barriers, and 'I am not young': relaxation feelings of family caregivers. Conclusions: The findings indicated that the day-care centres presented both challenges and opportunities to family caregivers, and the psychological and cultural services at these centres must be further enhanced.

 

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Experiences of Daughters Caring for a Parent With Alzheimer's Disease Living at Home

Methods: The current study used purposeful and snowball sampling to interview 12 daughters who were care-givers to their parents with Alzheimer's disease. Data were collected through in-depth, semi-structured interviews and were analyzed using Colaizzi's descriptive phenomenological approach. Caregiving years ranged from 1 to 10 years, with a mean of 5 years. Findings: Six themes were uncovered: (a) Where Are You When I Need You?; (b) Safety First; (c) I Don't Know What to Say or How to Say It; (d) They Are Beautiful People, but They Aren't Trained; (e) Letting Go of Who They Were; and (f) It Affects Every Area of My Life. Conclusions: Findings suggest that caregiver daughters of parents with AD living at home are struggling and indicate a need for better support of caregivers. Implications for nursing practice, research, and education are significant and require a greater focus on the support of informal caregivers of persons with AD. 

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Experiences of Communicating with Older Adults with Alzheimer's Disease: A Phenomenological Study of Family Caregivers

Background: Communication allows people to make sense of the world, for people to connect, establish, maintain and change relationships. The declining communicative abilities of older adults with Alzheimer's disease, however, may affect the quality of life of both caregivers and older adults. This study aimed to explore and better understand the lived experiences of family caregivers in communicating with older adults with this disease. Design: An interpretative phenomenological approach was conducted in the province of Songkhla, Thailand between November 2018 to June 2019. Ten family caregivers were selected by purposeful sampling. Open-ended, semi-structured interviews were conducted. Interviews were audiotaped, transcribed verbatim and analyzed using thematic analysis. Findings: Two main themes were identified that represented areas of communication: engaging in troublesome communication; and inability to relate to each other. Effective communication strategies and techniques to improve communication problems were identified such as showing respect, compliance, distraction and therapeutic lies. After understanding the findings of this study, nurse practitioners and nurses need to understand the importance of assessing and analyzing the communication issues between caregivers and their older relatives. Conclusions: Our findings can be a basis for planning and developing appropriate supports to enhance communication skill of the family caregivers within the context of daily communication with older adults with Alzheimer's disease.

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The Experiences of Caregivers of Persons Living with Dementia in Jamaica during COVID-19

Background: This article provides descriptive insights of the experiences of family caregivers of persons living with dementia during the COVID-19 pandemic. Data were generated as part of a qualitative cross-national project to explore the costs and consequences of providing unpaid dementia care. Methods: Participants in Jamaica, who were recruited using community gatekeepers, information booths at health fairs, conferences, and other outreach events, were contacted by telephone to discuss their experiences of the pandemic. When face-to-face in-depth interview data collection was suspended due to the pandemic, ethical approval was received to contact all research participants who were informal unpaid family caregivers, both those whose care recipients had died and those who were active caregivers (N = 19). Participants in this study were the 10 active family caregivers (nF = 8; aged 45+; 60% from high socio-economic status). Their updates and reflections during these calls were documented in fieldnotes and analyzed for key themes. Findings: Data showed that the pandemic has illustrated the direct costs, both financial and otherwise, that informal dementia carers bear in Jamaica. It also intensified pre-existing challenges faced by family carers. We provide recommendations for sustainable support for family carers. 

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The Experience of Working With a Faith Community Nurse Liaison of Care in a Primary Care Practice Among Older Adult Clients and Their Informal Caregiver

Background: Informal caregivers of older adults aging in place are at risk for adverse health and financial consequences. This descriptive qualitative study explored the experience of working with a faith community nurse (FCN) liaison of care in a Catholic health care system affiliated primary care practice among older adult clients and their informal caregiver. Methods: Semistructured face-to-face interviews were conducted with nine older adult client–informal caregiver dyads, three clients, and one caregiver (n = 22). Interviews were audio recorded, transcribed, and analyzed using Braun and Clarke's reflexive thematic analysis method. Findings: The analysis generated one overarching theme, I'm Sorry the Study and FCN Visits Are Coming to an End, and two key themes, The FCN Was Always There to Help Us (older adult clients) and The FCN Took the Pressure Off of Caregiving for Awhile (informal caregivers). Participants viewed the FCN as an instrumental member of their health care team and considered prayer and spiritual support offered by the FCN an essential element of care.

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'The experience of spirituality in family caregivers of adult and elderly cancer patients receiving palliative care: A meta‐synthesis'

Introduction: Spirituality is a multidimensional aspect of human experience. In the context of palliative care, it is an individual resource that can be used to cope with illness and to assign new meanings to suffering. Qualitative studies that aim to investigate the experience of spirituality and the needs of family caregivers in this context are rare. Objective: This meta‐synthesis aimed to synthesise qualitative studies on the experience of spirituality in family caregivers of adult and elderly cancer patients receiving palliative care. Methods: A systematic review was performed in six databases, and 14 studies were included in this meta‐synthesis. Results: The results are presented as a thematic synthesis divided into two analytical themes: (1) The interweaving of spirituality with end‐of‐life care and (2) The dimensions of suffering and spirituality in the dying process of the loved one. Each analytical theme is explained by two descriptive themes. The results showed that family caregivers express their spirituality in a multidimensional way, giving meaning to the care provided and reassessing the meanings of their lives and their suffering. Conclusion: Investigating the suffering and spiritual needs of family members in this context may be of value to inform comprehensive and multi‐professional psychosocial care.

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Expanding enhanced recovery protocols for cardiac surgery to include the patient voice: a scoping review protocol

Background: Cardiac surgery is becoming increasingly common in older, more vulnerable adults. A focus on timely and complete medical and functional recovery has led to the development of enhanced recovery protocols (ERPs) for a number of surgical procedures and subspecialties, including cardiac surgery (ERAS® Cardiac). An element that is often overlooked in the development and implementation of ERPs is the involvement of key stakeholder groups, including surgery patients and caregivers (e.g., family and/or friends). The aim of this study is to describe a protocol for a scoping review of cardiac patient and caregiver preferences and outcomes relevant to cardiac surgery ERPs. Methods: Using Arksey and O’Malley’s et al six-stage framework for scoping review methodologies with adaptions from Levac et al. (Represent Interv: 1–18, 2012), a scoping review of existing literature describing patient- and caregiver-identified preferences and outcomes as they relate to care received in the perioperative period of cardiac surgery will be undertaken. The search for relevant articles will be conducted using electronic databases (i.e., the Cochrane Library, Medline, PsycINFO, Scopus, and Embase), as well as through a search of the grey literature (e.g., CPG Infobase, Heart and Stroke Foundation, ProQuest Theses and Dissertations, Google Advanced, and Prospero). Published and unpublished full-text articles written in English, published after the year 2000, and that relate to the research question will be included. Central to the design of this scoping review is our collaboration with two patient partners who possess lived experience as cardiac surgery patients. Discussion: This review will identify strategies that can be integrated into ERPs for cardiac surgery which align with patient- and caregiver-defined values. Broadly, it is our goal to demonstrate the added value of patient engagement in research to aid in the success of system change processes.

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Evaluating the provision of Further Enabling Care at Home (FECH+) for informal caregivers of older adults discharged home from hospital: protocol for a multicentre randomised controlled trial

Introduction: There are personal and societal benefits from caregiving; however, caregiving can jeopardise caregivers’ health. The Further Enabling Care at Home (FECH+) programme provides structured nurse support, through telephone outreach, to informal caregivers of older adults following discharge from acute hospital care to home. The trial aims to evaluate the efficacy of the FECH+ programme on caregivers’ health-related quality of life (HRQOL) after care recipients’ hospital discharge. Methods and analysis: A multisite, parallel-group, randomised controlled trial with blinded baseline and outcome assessment and intention-to-treat analysis, adhering to Consolidated Standards of Reporting Trials guidelines will be conducted. Participants: (N=925 dyads) comprising informal home caregiver (18 years or older) and care recipient (70 years or older) will be recruited when the care recipient is discharged from hospital. Caregivers of patients discharged from wards in three hospitals in Australia (one in Western Australia and two in Queensland) are eligible for inclusion. Participants will be randomly assigned to one of the two groups. The intervention group receive the FECH+ programme, which provides structured support and problem-solving for the caregiver after the care recipient’s discharge, in addition to usual care. The control group receives usual care. The programme is delivered by a registered nurse and comprises six 30–45 min telephone support sessions over 6 months. The primary outcome is caregivers’ HRQOL measured using the Assessment of Quality of Life—eight dimensions. Secondary outcomes include caregiver preparedness, strain and distress and use of healthcare services. Changes in HRQOL between groups will be compared using a mixed regression model that accounts for the correlation between repeated measurements. Ethics and dissemination: Participants will provide written informed consent. Ethics approvals have been obtained from Sir Charles Gairdner and Osborne Park Health Care Group, Curtin University, Griffith University, Gold Coast Health Service and government health data linkage services. Findings will be disseminated through presentations, peer-reviewed journals and conferences.Trial registration number ACTRN12620000060943.

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Evaluating service user & carer experience of videoconferencing software during COVID-19 pandemic

Aims: To evaluate service user and carer experience of use of videoconferencing software (Microsoft Teams) during MDT meetings. To identify specific areas for improvement. To make changes based on these recommendations. Method: 2 surveys were distributed to inpatients and their carers on a functional Older Adults inpatient ward (n = 21), including quantitative and qualitiative questions. The results from these were compiled, and on review, mutliple recommendations for improvement were made. Result: 90% of service users find it helpful to have family present over video conferencing software during their MDT meetings, and 91% of carers feel involved and able to contribute when they do join in this way. 81% of carers have the technology available at home to use such software, but only 55% of them feel confident using it. 73% need more information on its use. 60% of carers referenced poor staff skills with software as a barrier to its use, and 60% referenced poor organisation of meetings. 2 service users raised issue with the size of a small laptop screen not allowing them to see who was actually present over MS Teams, although none were concerned with issues around confidentiality and the use of such softwareSeveral service users, carers and members of community teams identified poor sound quality as an issue, both when joining over the software, and when present in the room. Conclusion: Widespread use of videoconferencing software such as MS Teams is likely to continue beyond the end of the COVID-19 pandemic. Through discussion with the ward team, the IT department, the training department, and the local council, multiple changes were made to the service, as below. These form a recommended list of areas for improvement in other services. Availability of videoconferencing equipment (in addition to laptop), dedicated videoconferencing microphone/speaker to improve sound quality, display screen, webcam, organisation of meetings, designating a chairperson to admit and introduce all participants, designating a meeting organiser to invite all necessary participants, staff skills, local audit of staff familiarity with software, introduction of mandatory training for staff on use of software, carer skills & access to equipment, information and support available from well-trained staf, liaison with other organisations including council and third sector about availablity of equipment loans and training for carers

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Estimating Service Demand for Intermediary Care at a Community Integrated Intermediary Care Center among Family Caregivers of Older Adults Residing in Chiang Mai, Northern Thailand

Background: Thailand’s population is currently the third most rapidly aging in the world, with an estimated 20 million ageing population by 2050. Sustainability of the family based long-term care model is challenged by the chronic burden on family caregivers and by smaller family sizes. We aimed to introduce a new service model, Community Integrated Intermediary Care (CIIC), TCTR20190412004, including free of charge intermediary care services at CIIC centers in the local community, to help older adults whose caregivers are temporarily unable to sustain care at home. Since Thai society upholds values of gratefulness, it is better to estimate willingness to use such an intermediary care service first, before introducing the service. Methods: A total of 867 pairs of senior citizens and their family caregivers were interviewed with structured-questionnaires in 2019. Descriptive analysis and binary logistic regression were applied to determine the predictors of family caregivers’ willingness to use the CIIC service, guided by Anderson’s model of health services use. Results: About 26.8% of elderly participants and 24.0% of family caregivers were willing to use an intermediary care service. The family caregiver determinants of predisposing factors (kinship: spouse caregivers, other relatives, maid or friends; job types: own business and private company staff), enabling factors (original community residents and monthly income ≤9000 baht), and need factors (caregiver burden total scores ≥24, taking leave for caregiving, and having diabetes), were found to be significantly associated with willingness to use the CIIC service. Conclusions: The baseline survey data noted that caregivers’ sociodemographic factors and burden determined their willingness to use the intermediary care service, although the dependency of care recipients was low in this study. This, nonetheless, indicated that there is need for a backup respite care to strengthen current family based long-term aging care in Thailand.

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End-Of-Life Care Communication in Long-Term Care Among Nurses, Residents, and Families: A Critical Review of Qualitative Research

Background: RNs in long-term care (LTC) are a critical nexus for end-of-life (EOL) care communication with older adult residents and their families. Methods: A critical review of 17 qualitative research studies examined nurses' experience with EOL care in LTC. Results: Findings indicate that time, preparation, advocacy, organizational resources, and a continuous, relational approach support EOL care communication. Regulatory burdens, understaffing, workflow demands, family and organizational dysfunction, anxiety, and depression impede EOL care communication. The current review revealed a gap in the literature describing LTC RNs' unique perspectives and knowledge regarding EOL care communication with residents and families. Conclusions: There is a current, pressing need to understand the facilitators LTC RNs use to overcome obstacles to effective EOL care communication. Future research could inform clinical practice guidelines and EOL care nursing education, enhancing LTC nurses' capacity to develop trust-based relationships and improving the efficacy of current EOL care communication interventions in LTC. [Journal of Gerontological Nursing, 47(7), 43–49.]

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Embarking to Caregiving Role: A Thematic Analysis of Malay Caregivers of Older Adults with Mental Health Problems Perspectives

Background: Religion and culture affect the meaning and practicalities of caring for families with mental illness in Malaysia. Such care also differs according to social background, family values and support, commitment, availability, practicality and the needs of the care recipient. Methods: This qualitative study explores 14 Malay caregivers of the older adults with mental health problems in Kelantan, Malaysia. A semi-structured interview was translated and transcribed and subjected to thematic analysis using NVivo software. Findings: The findings show that cultural values and religion shaped the meaning of care as provided by the caregivers. The nature of the relationship is also important in determining the best person in the family to take over the caregiving role.

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Elder care and paid work: gender differences in the relationship between unpaid elder care work and employment in Bulgaria

Background: Care of elderly family members affects the welfare of the elderly and caregivers and has macroeconomic implications. In Eastern Europe, aging populations combined with under-developed care policy increase family care burdens, but the impact of care on labour force participation is understudied in this context. Methods: Using two waves of the Generations and Gender survey, we estimate the impact of care demand on paid employment in Bulgaria. Results: We find that living with an elderly or disabled parent has a negative impact on employment for women and that this impact cannot be explained by reverse causality or unobserved individual characteristics. Conclusions: More developed care policy would benefit caregivers and would be likely to generate broader fiscal benefits.

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Effects of Physical Activity Programs on Health Outcomes of Family Caregivers of Older Adults with Chronic Diseases: A Systematic Review

Objectives: This systematic review was conducted to analyze and capture the most recent trends in physical activity interventions for family caregivers of older adults with chronic disease as found in randomized clinical trials over the last 10 years (2010–2020). Methods: We used PubMed, CINAHL, Embase, PsycInfo, and the Cochrane Library. We synthesized participants’ demographics, physical activity interventions and family caregivers’ health outcomes. The Cochrane Collaboration Risk of Bias Tool was used to assess risk of bias of the included studies. Sixteen studies were included and most studies (n = 11) had a moderate risk of bias. Results: Physical activity programs with mixed modes (e.g., aerobic and resistance exercise), mixed delivery methods (e.g., in-person and telephone) and mixed settings (e.g., supervised gym-based sessions and unsupervised home-based sessions) were used most frequently. Physical activity interventions significantly improved psychological health but had inconsistent effects on physical health. Conclusions: This review provides current trends and research findings that suggest types of physical activity interventions and components that improve family caregivers’ health and wellness. 

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Effects of Caregiver Status, Coping Styles, and Social Support on the Physical Health of Korean American Caregivers

Purpose: This study investigated direct and indirect effects of caregiver status on the physical health of Korean American caregivers in terms of caregiver coping styles and the quantity and the quality of informal social support. Design and Methods: Using a sample of 87 caregivers and 87 matched noncaregivers, we analyzed a path model, employing both subjective (self-reported general health) and objective (blood pressure and cortisol levels) health indicators. For the intervening variables the path model employed coping styles and two aspects of social support (the quantity of informal social support and the quality of informal social support). Results: Our findings supported the association of caregiver status with poor health outcomes among Korean American caregivers. Of interest, the adverse effects of caregiver status on the physical health of caregivers were reported only with objective health markers (blood pressure and cortisol levels), not with subjective health indicators. The proposed indirect effects of caregiver status were supported only for cortisol levels, through the quality of informal social support. Implications: The demonstration of the physical health effects of caregiving in one of the nation's fastest growing ethnic groups, and the finding that these physiological effects occur without self-reported poor health, call attention to a potentially serious health problem in an understudied group providing family care to frail older family members. 

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Effects of a Modified Mindfulness-Based Cognitive Therapy for Family Caregivers of People With Dementia: A Randomized Clinical Trial

Background and Objectives: Family caregivers of people with dementia (PWD) experience high levels of stress resulting from caregiving. This study aimed to investigate the effects of a modified of Mindfulness-Based Cognitive Therapy (MBCT) for dementia caregiving. Research Design and Methods: 113 family caregivers of PWD were randomized to either the intervention group, receiving the 7-session modified MBCT for a period of 10 weeks with telephone follow-up or the control group, receiving the brief education on dementia care and usual care. The caregiving stress (primary outcome) and various psychological outcomes of caregivers and the behavioral and psychological symptoms of dementia (BPSD) in the care recipients were assessed and compared at baseline (T0), postintervention (T1), and at the 6-month follow-up (T2). Results: At both T1 and T2, the intervention group had a statistically greater improvement in stress (p = .02 and .03), depression (p = .001 and .04), anxiety (p = .007 and .03), and BPSD-related caregivers' distress (p = .003 and p = .04). A significant greater improvement was also demonstrated in mental health-related quality of life at T2 (p = .001) and BPSD of the care recipients at T1 (p = .04). The increased caregivers' level of mindfulness was significantly correlated with the improvement of various psychological outcomes at T1 and T2 with a correlation coefficient −0.64 to 0.43. Discussion and Implications: The modified MBCT enhanced the level of mindfulness in the caregivers and was effective to reduce the caregivers' stress and promote their psychological well-being during a 6-month follow-up. Future research is recommended to further examine its effects on the varieties of psychological and behavioral outcomes of both caregivers and care recipients and their dyadic relationships, as well as explore its mechanism of action in facilitating dementia caregiving.

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Effectiveness of an integrated multidisciplinary geriatric rehabilitation programme for older persons with stroke: a multicentre randomised controlled trial

Background: Almost half of the stroke patients admitted to geriatric rehabilitation has persisting problems after discharge. Currently, there is no evidence based geriatric rehabilitation programme available for older stroke patients, combining inpatient rehabilitation with adequate ambulatory aftercare in the community. Therefore, we developed an integrated multidisciplinary rehabilitation programme that includes aftercare for older persons with stroke. We evaluated the effectiveness of this newly developed rehabilitation programme in comparison to usual care. Methods: A multicentre randomised controlled trial was conducted in eight geriatric rehabilitation stroke units and their collaborating partners in primary care. The study population involved stroke patients and their informal caregivers who were aged 65 or over, living in the community before admission to geriatric rehabilitation, and expected to be able to return home after discharge. The programme consisted of three modules: inpatient neurorehabilitation, home-based self-management training, and stroke education. For patients, daily activity (FAI) was assessed as primary outcome and functional dependence (Katz-15), perceived quality of life (SSQoL) and social participation (IPA) as secondary outcomes. Additionally, among informal caregivers perceived care burden (self-rated burden VAS), objective care burden (Erasmus iBMG), and quality of life (CarerQol), were assessed as secondary outcomes. Results: In total 190 patients and 172 informal caregivers were included. Mean age of the patients in the intervention group was 78.9 years (SD = 7.0) and in the usual care group 79.0 years (SD = 6.5). Significant favourable effects for the programme were observed for the subscale autonomy outdoors of the IPA (− 2.15, P = .047, and for the informal caregivers perceived care burden (1.23, P = .048. For the primary outcome daily activity and the other secondary outcomes, no significant effects were observed. Conclusion: The integrated multidisciplinary programme had no effect on daily activity of older stroke patients. However, patients participating in the programme had a higher level of perceived autonomy of outdoor activities and their informal caregivers perceived a lower care burden. The programme might be promising in providing adequate (after) care, although adaptation of the programme is recommended to increase its feasibility and improve its effects. Trial registration Current Controlled Trials ISRCTN62286281. Registered 19-3-2010.

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Effectiveness of a telephone intervention based on motivational health coaching for improving the mental health of caregivers of people with dementia: A randomised controlled trial

Objectives: Caring for a family member with dementia is considered one of the activities with the greatest negative impact on a person's mental health. Developing long‐lasting and effective strategies is a challenge for caregivers. This study sought to evaluate the impact of an intervention based on a programme of motivational coaching delivered by telephone in a group of caregivers of patients with dementia compared to a control group. Methods: A randomised controlled trial with a control group and an intervention group. (CONSORT guidelines were used). Telephone calls were made during six weeks, involving a process of coaching and motivational interviews. The following variables were measured in caregivers: self‐efficacy of caring, depression, perceived stress, frequency of problematic behaviours and dysfunctional thoughts. Assessments were conducted at three time points: baseline, post‐intervention and three months’ post‐intervention. Results: In total, 106 caregivers participated (53 subjects in the control group and 53 in the intervention group). Statistically significant differences (ANCOVA) were found between both groups for the self‐efficacy and stress variables, with improved results in the intervention group (p < .01). Furthermore, statistically significant differences were found in the intervention group between the baseline and post‐intervention assessments, with improvements in self‐efficacy, decreased stress and decreased dysfunctional thoughts (p < .05). The results were maintained over time for both groups. Conclusions: An intervention based on telephone calls using a health coaching approach with motivational interviewing appears to be effective for the improvement of self‐efficacy and mental health of caregivers of people with moderate dementia. Furthermore, these effects appear to be maintained over time.

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Effectiveness of a digitally supported care management programme to reduce unmet needs of family caregivers of people with dementia: study protocol for a cluster randomised controlled trial (GAIN)

Background: Up to two-thirds of dementia care is provided by family caregivers who often experience high burden, little support and adverse health outcomes. Enabling and supporting family caregivers to provide care at home prevents early institutionalisation of the person with dementia and alleviates the economic burden of dementia in the long term. General practitioners (GPs), as the first point of contact, have a key role in identifying and managing burden and care needs of family caregivers. However, in routine care, this opportunity is often limited by time constraints and even if caregiver needs are recognised, detailed information about regionally available support and advice on healthcare services is often lacking.

Methods: This is a cluster randomised, controlled trial investigating the clinical use and cost-effectiveness of a digitally supported care management programme for caregivers of people with dementia (PwD). Five hundred family caregivers will be randomised at GP offices, specialist practices and memory clinics, with about n=250 participants per arm. Participants are eligible if they are the primary family caregiver of a PwD, are at least 18 years of age and provide informed consent. Participants in the intervention group will receive an individualised care management plan, which will be carried out by qualified study nurses in collaboration with the treating GP. All participants will receive a baseline assessment and a 6-months follow-up assessment. Participants in the wait-list control group will receive usual care. Starting at the 6 months’ follow-up, the former controls will also receive an individualised management plan. Primary outcomes are the number of unmet needs (incl. the Camberwell Assessment of Need for the Elderly, CANE) and health-related quality of life (EQ-5D-5L) at 6 months. Secondary outcomes include caregiver burden (Zarit Burden Interview, ZBI), social support (Lubben Social Network Scale, LSNS), the use of medical and non-medical services (Questionnaire for the Use of Medical and Non-Medical Services, FIMA) and resource utilisation (Resource Utilisation in Dementia, RUD). The primary analysis will be based on intention-to-treat. Between- and within-group analyses and a cost-effectiveness analysis will be conducted to estimate the effect of the tablet PC-based care management programme. This trial is funded by the German Federal Joint Committee (G-BA) Innovation Fund. Discussion: The findings of this trial will be useful in informing and improving current healthcare system structures and processes to support family dementia caregivers within routine care practices.

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Effect of Exercise Training on the Mental and Physical Well-Being of Caregivers for Persons Living With Chronic Illnesses: A Systematic Review and Meta-Analysis

Background: Increased demands associated with caregiving may lead to deleterious physical and mental health outcomes. Caregiving has proven to have consequences that affect both physical and psychological well-being. The purpose of this systematic review and meta-analysis was to assess the effects of exercise training on the mental and physical health of caregivers for persons living with chronic illnesses. Methods: A systematic review following the Prisma methodology was performed searching eight databases. Thirteen out of 1,632 screened studies were included for analysis. Results: The standardized mean difference was used as the effect size (ES) and was calculated such that a positive ES indicated efficacy of exercise training for improving health. Overall, the meta-analysis yielded a statistically significant and small-to-medium ES (overall ES = 0.30; 95% confidence interval = [0.08, 0.52]; p =.007). Conclusions: Our analysis supports exercise training to improve the mental and physical health of family caregivers of persons living with chronic illnesses.

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The effect of a multimodal comprehensive care methodology for family caregivers of people with dementia

Background: Caregivers experience social, physical and psychological burdens in caring for people with dementia. A study was conducted to assess the efficacy of a multimodal comprehensive care methodology training programme for the family caregivers of people with dementia. Methods: This research was an intervention trial with a quasi-experimental design. A total of 148 family caregivers of people with dementia participated in a multimodal comprehensive care methodology training programme for 6 hours (three times for 2 hours) in 3 months, which was followed by weekly delivery of information via postcard. The care burden of the caregivers was evaluated by the Japanese short version of the Zarit Burden Interview (J-ZBI) before the training, 1 month post-training and 3 months post-training (primary outcome). Each caregiver assessed the symptoms of the people with dementia for whom they provided care with the Behavioral Pathology in Alzheimer’s Disease (Behave-AD) (secondary outcome). Results: A total of 117 family caregivers (79%) were assessed 3 months after training. Over the course of the programme, the care burden significantly decreased from pre-training to 3 months post-training (P < 0.001). The mean care burden scores before, 1 month after, and 3 months after the intervention were 13.3, 10.9 and 10.6, respectively. The mean Behave-AD score of 101 people with dementia (68%) 3 months post-training was lower than that at pre-training, but the difference was not statistically significant (from 13.6 to 11.8, P = 0.005). Conclusions: The multimodal comprehensive care methodology training was associated with a reduction in the care burden of family caregivers. These findings suggest that randomized controlled trials with larger sample sizes are needed. Trial registration UMIN Clinical Trials Registry (UMIN-CTR), UMIN000043245. 

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The DWQ-EMR Embedded Tool to Enhance the Family Physician-Caregiver Connection: A Pilot Case Study

Background: The number of family caregivers to individuals with dementia is increasing. Family physicians are often the first point of access to the health care system for individuals with dementia and their caregivers. Caregivers are at an increased risk of developing negative physical, cognitive and affective health problems themselves. Caregivers also describe having unmet needs to help them sustain care in the community. Family physicians are in a unique position to help support caregivers and individuals with dementia, but often struggle with keeping up with best practice dementia service knowledge. Methods: The Dementia Wellness Questionnaire was designed to serve as a starting point for discussions between caregivers and family physicians by empowering caregivers to communicate their needs and concerns and to enhance family physicians’ access to specific dementia support information. The DWQ aims to alert physicians of caregiver and patient needs. This pilot study aimed to explore the experiences of physicians and caregivers of people using the Questionnaire in two family medicine clinics in Ontario, Canada. Interviews with physicians and caregivers collected data on their experiences using the DWQ following a 10-month data gathering period. Data was analyzed using content analysis. Results: Results indicated that family physicians may have an improved efficacy in managing dementia by having dementia care case specific guidelines integrated within electronic medical records. By having time-efficient access to tailored supports, family physicians can better address the needs of the caregiver–patient dyad and help support family caregivers in their caregiving role. Caregivers expressed that the Questionnaire helped them remember concerns to bring up with physicians, in order to receive help in a more efficient manner.

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Dual caregiving by grandmothers with older relatives: Personal factors influencing health and stress

Background: Grandmothers in the "sandwich generation" are considered as those women who are potential caregivers for two generations: older relatives and grandchildren. Methods: With the goal of understanding the factors that affect their stress and health, 149 women from southwestern Spain were interviewed using an ad hoc questionnaire that included standardized scales and subscales. Results: The results showed that age, coping strategies based on emotional support and acceptance, as well as optimism and social support improved the health of these women by reducing their perceived stress. Although caring for older relatives is related to family conflicts and worse health, conversely, caring for grandchildren is related to slightly better health. Conclusions: The results are useful for planning psychological interventions with these women and highlight the need to include family interventions.

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Double child and elder care responsibilities and emotional exhaustion of an older sandwiched generation: The mediating effect of self-care

Background: The number of informal caregivers over the age of 50 who care for multiple family members including children and elderly relatives – a practice termed 'double care' – has steadily increased in Asian countries. Despite the rise in depression and stress among such caregivers, few studies have examined factors that may mitigate their emotional exhaustion. Methods: This research examines relationships between care responsibilities and emotional exhaustion, and the mediation effects of self-care on people in their 50s through 70s who provide care to multiple family members including children and elderly parents or relatives. The participants of this study were 183 people who were providing double care. The authors used care responsibilities as the independent variable, self-care as a mediator, and emotional exhaustion as the dependent variable. Results: Results indicate that care responsibilities significantly affect emotional exhaustion, and that emotional exhaustion is mediated by self-care. Conclusions: The findings suggest that attention to self-care may reduce emotional exhaustion among caregivers in this older age group.

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Do-not-resuscitate decision making for terminally ill older patients in the emergency department: An explorative, descriptive inquiry of Chinese family members

Background: This study increases our knowledge and understanding of factors influencing DNR decision-making by family members of terminally ill older adults in the emergency department. Emergency medical staff should keep abreast of the attitudes and wishes of family members and terminally ill older adults regarding DNR, and initiate DNR decision-making discussions as early as possible. Emergency nurses should pay more attention to the desire of family members to improve the quality of life of terminally ill older adults with DNR. Many terminally ill older adults depend on family members to make medical decisions in China. Many family members find it difficult to make do-not-resuscitate (DNR) decisions in emergency departments (ED). Currently, factors that affect DNR decision making by family members for older adults needing emergency care have not been well studied. Methods: This qualitative inquiry explores factors influencing DNR decision-making among family members of terminally ill older adults in ED. Semi-structured in-depth interviews were conducted for a 12-family member of terminally ill older adults at ED in China. Results: Results of the conventional content analysis showed that family members made DNR decisions based on a wide of reasons: (a) subjective perception of family members, (b) conditions of the terminally ill older adults, (c) external environmental factors, and (d) internal family factors. The findings of this study expand our knowledge and understanding of factors influencing DNR decision-making by family members of terminally ill older adults in ED.

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A Digital Mobile Community App for Caregivers in Singapore: Predevelopment and Usability Study

Background: With increasing life expectancy and aging populations, the global prevalence of chronic diseases and the long-term care required for people with comorbidities is rising. This has led to an ever-growing need for caregiving. Previous literature has shown that caregivers face problems of isolation and loneliness. However, many health organizations mainly focus their efforts on in-person community groups that require participants to meet physically. This is not always convenient or accessible for caregivers who are often juggling caring for their care recipient with family and work responsibilities. Objective: With medical advancements such as the proliferation of mobile phones and internet technology, caregivers may have opportunities for easier access to resources and support. Technological innovations could help empower the caregiving community to seek assistance for improving their quality of life at their convenience. A community network app called Caregivers’ Circle was conceptualized in response to the needs of the caregivers on a day-to-day caregiving journey. This paper traces the predevelopment inquiry and technical details of this app to provide a clear understanding of its implementation along with a usability study to gauge user opinion of the app within Singapore. Methods: A predevelopment survey was conducted to identify specific needs of caregivers and gaps in the currently available web-based community networks. The survey consisted of questions on demographical data, health-related issues of the care recipient, mental and physical health–related issues of the caregiver, digital media use, information seeking, and support. This pre–app development survey was completed by 103 caregivers. Qualitative enquiries were also conducted with caregivers within Singapore to identify issues related to caregiving, support provided, and what caregivers would want from a caregiving mobile app. Results: From the feedback garnered from the caregivers, the developers were able to identify several caregivers’ needs and gaps within the current support networks. This feedback was integrated into the mobile app called Caregivers’ Circle upon development. The features of this app include a public forum for community discussions, a marketplace to buy and sell items, care groups to hold private discussions with friends or other users of the app, and a friends feature to search and add new caregiving friends. Conclusions: In general, the caregivers liked the Caregivers’ Circle app and were confident that this app could help them have a better quality of life. The Caregivers’ Circle app is unique in its integrated approach. The integration of many features that caregivers need on a daily basis into an easy app can save their time as well as help them navigate their life smoothly.

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Differences in Burden Severity in Adult-Child Family Caregivers and Spousal Caregivers of Persons with Dementia

Background: Researchers are continuing to focus on the nature and sources of burden of family caregivers of persons living with dementia. Caregiving stress and burden are assessed and addressed by social workers, including at high-risk times such as hospitalization. Methods: This study tested whether adult-child family caregivers experience greater perceived burden than spousal caregivers, accounting for risks of acute stress which can accompany hospitalization for their care recipient, where social workers may be meeting with family caregivers for the first time. Family caregivers (N = 76; n = 42 adult-child; n = 34 spouse) were recruited during care-recipient clinical treatment. The settings of care included an outpatient memory care program and an inpatient geriatric psychiatry service. Results: Results showed that adult-child caregivers reported greater burden as compared with spousal caregivers, but no differences regarding depressive symptoms, perceived stress, or grief. After controlling for demographics and location of care, being an adult-child caregiver remained a predictor of greater burden severity. Being an adult-child family caregiver may place an individual at increased risk for experiencing high burden. Conclusions: These findings suggest socials workers should consider how adult-child caregivers may benefit from strategies to address and reduce burden, beyond those typically offered to spousal caregivers.

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Developing and testing of an integrative theoretical model to predict positive aspects of caregiving among family caregivers of persons with dementia: A study protocol

Aims: The aim is to develop and test an integrative model based on the stress and coping paradigm and the existential paradigm, to explain positive aspects of caregiving among family caregivers of persons with dementia. Design: A mixed method research, comprises a longitudinal exploratory study and a descriptive qualitative study. Methods: A total of 370 family caregivers will be recruited from community elderly centres. Questionnaires on positive aspects of caregiving and its predictors (including active dementia management strategies, meaning‐focused coping, and self‐efficacy) and contextual factors (including social support, religiosity, continuous good dyadic relationship quality, and intrinsic motivation towards caregiving) will be administered. Positive aspects of caregiving will be reassessed six months later. Path analysis will be used to test the hypothesized model. A subsample of 30 family caregivers will be interviewed individually to explore how positive aspects of caregiving develop from the caregiving experience. Inductive thematic analysis will be used to for the qualitative data analysis. The funding was approved in January 2018. Discussion: Positive aspects of caregiving represents the extent to which the caregiving experience is seen as enriching an individual's life space and resulted in health protective effects. With the increasing evidence to indicate its associating factors, it is imperative to identify the theoretical model to comprehensively elucidate the process for its development. Impact: Theoretically, this study will advance the knowledge of dementia caregiving by generating a comprehensive theory‐driven predictive model to explain how positive aspects of caregiving is developed among the family caregivers. In terms of nursing practice, the findings can inform the development of intervention to improve positive aspects of caregiving and thereby acts as a catalyst to promote the paradigm shift from 'reducing limitations' to 'optimizing strengths' in family caregivers support services.

 

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Dementia families: Relinquishing home care to aged care services: Guilt, traumatic loss and growth

Background and Objectives: Few studies explore both negative and positive perspectives of family members who relinquish home care of a family member with dementia for systemic aged care. Research Design and Methods: This phenomenological study sought the 'lived' experience of relinquishing the role of home carer for a family member with mild to severe dementia to others within care home settings, by seeking to understand the impact of aged care on family members' psychological well-being. Using semi-structured interviews, positive and negative subjective interpretations from 17 families (27 individuals) provided data for analysis, following the protocols of interpretative phenomenological analysis. Results: One superordinate theme, mistrust/integrity, overarched oscillation between mistrust of the aged care system and a struggle for personal integrity in caring for these participants. Two sub-themes emerged: intrinsic trauma and extrinsic trauma. Intrinsic trauma explained feelings of helplessness and guilt, and internally directed responses that triggered a retreat into submission ultimately reducing the participant's role in advocacy. Extrinsic trauma represented externally directed responses such as anger and frustration, where family members became more engaged and watchful and recognised a need for vigilance and advocacy. Paradoxically oscillating between these personal struggles, participants exhibited growth, a third theme that defined assertive/advocacy utilised to nurture hope, gratitude, courage and change. Discussion and Implications: Family members experienced complex distress as they relinquished home care to others within systemic aged care for a member with dementia. By developing adaptive responses as appropriate, for example, advocating for their family member or accepting compliance with treatment, collaborative care between family and staff created better outcomes for the family member with dementia.

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Dementia Caregivers' Experiences and Reactions to Remote Activity Monitoring System Alerts

Background: Technology-based tools, including remote activity monitoring (RAM) systems, have been proposed as valuable aids for family caregivers of people with dementia. Previous analyses have shown limited effects of these systems and highlighted a number of barriers, including false alarms. Methods: We used data from an ongoing embedded mixed method randomized controlled intervention to describe patterns of alerts and their association with receipt of the RAM system and caregiver outcomes. Quantitative analyses showed a modest positive association between the number of alerts during the first month and system review score. In addition, qualitative results illustrated the importance of alert context, including utility, accuracy, and type of alert delivery. Conclusions: These findings highlight the relevance of early alerts to engagement with and perceived benefit from the RAM system. 

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The Decision-Making Experiences of Caregivers Regarding Feeding Tube Placement in Community-Dwelling Adults: A Descriptive Phenomenological Study

Background: Percutaneous endoscopic gastrostomy feeding tube placement is multifactorial and considered a lifesaving mechanism, which leads to a host of thoughts and feelings that affect the decision-making experience. As people live longer and the population ages, these decisions often involve the caregivers who have their own experience and therefore can result in caregiver burden and anxiety. Methods: A descriptive phenomenological study was conducted to describe and understand the caregiver's decision-making experience regarding percutaneous endoscopic gastrostomy feeding tube placement in community-dwelling adults. Edmund Husserl's philosophical underpinnings were utilized in conjunction with Colaizzi's (1978) method of data analysis to maintain the rigor of the study. Sixteen adult caregivers of patients from six rehabilitation and skilled nursing facilities were interviewed using a semistructured interview guide. The audio-recorded interviews were transcribed and thematic analysis was conducted. Findings: The study results yield four main themes: "Survival... that was the determining factor"; "The doctor decided"; "More education... just make sure they understand"; and "It makes me very scared." Implications for practice, policy, and future research are thoroughly discussed.

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Cross-sectional study evaluating burden and depressive symptoms in family carers of persons with age-related macular degeneration in Australia

Objectives: We aimed to analyse the degree of carer burden and depressive symptoms in family carers of persons with age-related macular degeneration (AMD) and explore the factors independently associated with carer burden and depressive symptoms. Methods: Cross-sectional study using self-administered and interviewer-administered surveys, involving 96 family carer–care recipient pairs. Participants were identified from tertiary ophthalmology clinics in Sydney, Australia, as well as the Macular Disease Foundation of Australia database. Logistic regression, Pearson and Spearman correlation analyses were used to investigate associations of explanatory factors (family caregiving experience, carer fatigue, carer quality of life and care-recipient level of dependency) with study outcomes—carer burden and depressive symptoms. Results: Over one in two family carers reported experiencing mild or moderate-severe burden. More than one in five and more than one in three family carers experienced depressive symptoms and substantial fatigue, respectively. High level of care-recipient dependency was associated with greater odds of moderate-severe and mild carer burden, multivariable-adjusted OR 8.42 (95% CI 1.88 to 37.60) and OR 4.26 (95% CI 1.35 to 13.43), respectively. High levels of fatigue were associated with threefold greater odds of the carer experiencing depressive symptoms, multivariable-adjusted OR 3.47 (95% CI 1.00 to 12.05). Conclusions: A substantial degree of morbidity is observed in family carers during the caregiving experience for patients with AMD. Level of dependency on the family carer and fatigue were independently associated with family carer burden and depressive symptoms. Trial registration number: The trial registration number is ACTRN12616001461482. The results presented in this paper are Pre-results stage.

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A cross-european study of informal carers’ needs in the context of caring for older people, and their experiences with professionals working in integrated care settings

Introduction: Informal carers are increasingly relied on for support by older people and the health and social care systems that serve them. It is therefore important that health and social care professionals are knowledgeable about and responsive to informal carers’ needs. This study explores informal carers’ own needs within the context of caregiving; and examines, from the informal carers’ perspective, the extent to which professionals assess, understand and are responsive to informal carers’ needs. Methods: We interviewed (2016–2018) 47 informal carers of older people being served by 12 integrated care initiatives across seven countries in Europe. The interviews were thematically coded inductively and analysed. Results: Informal carers reported that professionals treated them with respect and made efforts to assess and respond to their needs. However, even though professionals encouraged informal carers to look after themselves, informal carers’ needs (e.g., for respite, healthcare) were insufficiently addressed, and informal carers tended to prioritize older people’s needs over their own. Discussion and conclusion: Informal carers need better support in caring for their own health. Health professionals should have regular contact with informal carers and proactively engage them in ongoing needs assessment, setting action plans for addressing their needs, and identifying/accessing appropriate support services. This will be important if informal carers are to continue their caregiving role without adverse effects to themselves.

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Covid-19 vaccine literacy of family carers for their older parents in Japan

Background: In super-ageing Japan, COVID-19 vaccinations were starting to reach older people as of June 2021, which raises the issue of vaccine literacy. This study focuses on family members who work and also care for their older parents, as they are at risk of COVID-19 and also risk transmitting COVID-19 to the parents they care for and potentially influencing their parents’ vaccine uptake. Such family carers are central to the approach in Japan to achieving a sustainable and resilient society in response to ageing. Contrasting family carers’ COVID-19 vaccine literacy with their overall health literacy provides insights into their preparedness for COVID-19 vaccinations. The purpose of this study is to understand how vaccine literacy, compared to health literacy, varies across family carers and the sources of information they use. Methods: Through a cross-sectional online survey, family carers’ vaccine literacy, health literacy and their sources of information, including mass media, social media, health and care professionals, family, colleagues, friends, and others, were assessed. The participants’ (n = 292) mean age was 53, with 44% women, and an average of 8.3 h per week caring for their parents. Results: Notwithstanding the increased risks from COVID-19 with age, COVID-19 vaccine literacy relative to health literacy for older family carers is lower on average, higher with increased provision of care, and more variable, resulting in a substantial proportion of older family carers with relatively low vaccine literacy. Conclusions: At this stage of vaccine rollout in Japan, family carers’ sources of information to inform COVID-19 vaccine literacy is distinct, including more national and local mass media versus less health and care professionals and informal networks, which indicates the importance of tailored health communication strategies to enhance vaccine literacy. 

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COVID-19 and Long-Term Care: the Essential Role of Family Caregivers

Background: Those most at risk from severe COVID-19 infection are older adults; therefore, long-term care (LTC) facilities closed their doors to visitors and family caregivers (FCGs) during the initial wave of the COVID-19 pandemic. The most common chronic health condition among LTC residents is dementia, and persons living with dementia (PLWD) rely on FCGs to maintain their care provision. This study aims to evaluate the impact of visitor restrictions and resulting loss of FCGs providing in-person care to PLWD in LTC during the first wave of the COVID-19 pandemic. Method: An online survey and follow-up focus groups were conducted June to September 2020 (n=70). Mixed quantitative (descriptive statistics) and qualitative (thematic analysis) methods were used to evaluate study data. Results: FCGs were unable to provide in-person care and while alternative communication methods were offered, they were not always effective. FCGs experienced negative outcomes including social isolation (66%), strain (63%), and reduced quality of life (57%). PLWD showed an increase in responsive behaviours (51%) and dementia progression. Consequently, 85% of FCGs indicated they are willing to undergo specialized training to maintain access to their PLWD. Conclusion: FCGs need continuous access to PLWD they care for in LTC to continue providing essential care.

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The course of readmission in frail older cardiac patients

Aim: The aim of this study is to explore patients’ and (in)formal caregivers’ perspectives on their role(s) and contributing factors in the course of unplanned hospital readmission of older cardiac patients in the Cardiac Care Bridge (CCB) program.DesignThis study is a qualitative multiple case study alongside the CCB randomized trial, based on grounded theory principles. Methods: Five cases within the intervention group, with an unplanned hospital readmission within six months after randomization, were selected. In each case, semi‐structured interviews were held with patients (n = 4), informal caregivers (n = 5), physical therapists (n = 4), and community nurses (n = 5) between April and June 2019. Patients’ medical records were collected to reconstruct care processes before the readmission. Thematic analysis and the six‐step analysis of Strauss & Corbin have been used. Results: Three main themes emerged. Patients experienced acute episodes of physical deterioration before unplanned hospital readmission. The involvement of (in)formal caregivers in adequate observation of patients’ health status is vital to prevent rehospitalization (theme 1). Patients and (in)formal caregivers’ perception of care needs did not always match, which resulted in hampering care support (theme 2). CCB caregivers experienced difficulties in providing care in some cases, resulting in limited care provision in addition to the existing care services (theme 3). Conclusion: Early detection of deteriorating health status that leads to readmission was often lacking, due to the acuteness of the deterioration. Empowerment of patients and their informal caregivers in the recognition of early signs of deterioration and adequate collaboration between caregivers could support early detection. Patients’ care needs and expectations should be prioritized to stimulate participation.Impact(In)formal caregivers may be able to prevent unplanned hospital readmission of older cardiac patients by ensuring: (1) early detection of health deterioration, (2) empowerment of patient and informal caregivers, and (3) clear understanding of patients’ care needs and expectations.

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Correlates of Formal Support Service Use among Dementia Caregivers

Background: Informal caregivers for persons with dementia frequently report needing assistance, yet formal support service use has been low. Methods: To better understand factors associated with service use, correlates of self-reported service use (e.g., support groups, family mediation, family leave, classes/trainings, and respite care) among dementia caregivers were assessed. The National Poll on Healthy Aging conducted a nationally representative web-based survey of adults aged 50–80 (N = 2,131) using Ispos' KnowledgePanel®. Results: 148 reported caregiving for an adult with memory loss [61.5% female; 25% nonwhite, 54.1% aged 50–64]. Multivariable logistic regression analyzes assessed caregiver and care recipient characteristics associated with service use within the prior year. Nearly 25% of caregivers used at least one service. Caregiver characteristics associated with greater likelihood of service use included not working [7.5 OR; 2.73, 20.62 CI]; income <$30,000/year [5.9 OR; 1.27, 27.17 CI]; and residing in Western US [7.5 OR; 2.73, 20.62 CI]. Ability of care recipient to be left alone safely for only three hours or less [5.1 OR; 1.66, 15.46 CI] was associated with greater likelihood of use. Support service use remains low. Conclusions: Findings suggest need to consider caregivers' employment status, income, and geographical location in service design and implementation.

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Coping Patterns Among Primary Informal Dementia Caregivers in Singapore and Its Impact on Caregivers-Implications of a Latent Class Analysis

Background and Objectives: Existing studies typically explore the factor structure of coping strategies among dementia caregivers. However, this approach overlooks the fact that caregivers often use different coping strategies simultaneously. This study aims to explore the coping patterns of primary informal dementia caregivers in Singapore, examine their significant correlates, and investigate whether different patterns would affect the depressive symptoms of caregivers. Research Design and Methods: Two hundred eighty-one primary informal caregivers of persons with dementia (PWD) were assessed. Coping strategies were measured by the Brief Coping Orientation to Problem Experienced inventory. A latent class analysis was performed to explore caregivers' coping patterns, followed by logistic regressions to identify the significant correlates and the relationships between coping patterns and caregiver depression. Results: The latent class analysis suggested a three-class solution that was featured by the frequency and variety of coping strategies used by caregivers-high coping (36.3%), medium coping (37.7%), and low coping (26.0%). Factors influencing the coping patterns of our sample were mainly related to caregivers' individual resources such as personal characteristics and caregiving stressors like PWD's problematic behaviors and caregiving burden. Compared to caregivers in the low coping group, those in the medium coping group had significantly higher risks of potential depression. Discussion and Implications: The current study confirmed that there are distinct coping patterns among primary informal dementia caregivers, and caregivers with the low coping pattern had fewer depressive symptoms. Future research is needed to explore if coping patterns from our sample are generalizable to dementia caregivers elsewhere.

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Contradictory responses to the COVID-19 pandemic in amyotrophic lateral sclerosis patients and their families and caregivers in Japan

Objective: The coronavirus disease 2019 (COVID-19) pandemic has resulted in a shortage of medical resources, including ventilators, personal protective equipment, medical staff, and hospital beds. We investigated the impact of COVID-19 in amyotrophic lateral sclerosis (ALS) patients, their families, caregivers, and medical experts. Methods: We conducted a nationwide ALS webinar about COVID-19 in May 2020 and sent a questionnaire to those enrolled. Results: A total of 135 participants (31 ALS patients; 23 families and caregivers of ALS patients; 81 medical experts) responded to this cross-sectional self-report questionnaire. The results showed that tracheostomy and invasive ventilation (TIV) was used in 22.6% of ALS patients, whereas 77.4% of ALS patients were not under TIV. Among non-TIV patients (n=24), 79.2% did not want TIV in the future. However, 47.4% of non- TIV patients not wanting a tracheostomy in advanced stages replied that they would want an emergency tracheostomy if they developed COVID-19-related pneumonia. These results suggest that ALS patients may be receptive to emergency treatments for reasons other than ALS. In addition, approximately half of the ALS patients agreed with the policy of not ventilating the elderly or ALS patients in case of a ventilator shortage. Furthermore, compared with medical experts, few ALS patients reported that the chance for ALS patients to obtain work was higher due to the increasing availability of remote work. Conclusions: This survey indicates that the COVID-19 pandemic might be associated with increased distress about access to care and work, inducing contradictory responses and potential hopelessness among ALS patients. 

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Contextual Therapy for Couples who are Primary Caregivers for a Parent(s) with Alzheimer's Disease

Background: The number of individuals experiencing Alzheimer's disease is increasing as the population ages. The majority of individuals experiencing Alzheimer's disease receive care from a family member, most often a spouse or adult child. Adult child caregivers have unique needs and life situations that put them at increased risk for caregiver burden and burnout. While both individual therapy and family therapy have been used with family caregivers, little scholarship has explored the role of couples therapy in improving caregiver outcomes. Methods: This article explores contributing factors to adult child caregiver burden and applies contextual therapy to treat these problems in couples therapy. We use a clinical vignette to illustrate the application of fairness, balance, loyalty conflicts, and constructive/destructive entitlement to caregiving. Conclusions: In all, we identify common dynamics in couples wherein one or both partners are primary caregivers for parents with Alzheimer's disease and provide clinical suggestions on how to assess and treat these challenges in couples therapy.

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Concerns of Family Caregivers during COVID-19: The Concerns of Caregivers and the Surprising Silver Linings

Background: COVID-19 has had an enormous impact on older people around the world. As family caregivers provide a good portion of the care for older people, their lives have been drastically altered by COVID-19 too. Our study is an in-depth exploration of the greatest concerns of family caregivers in the United States during COVID-19, as well as their perspectives on the benefits of caregiving during this global pandemic. Methods: We conducted in-depth interviews with a diverse sample of 52 family caregivers in the United States between May and September of 2020 over video conferencing using a semi-structured interview guide. Thematic analysis was conducted to ascertain our participants’ perceptions. Findings: Caregiver’s concerns were organized into six main themes, including social isolation, decline in mental health, decline in physical and cognitive functioning, keeping their family members safe from COVID-19, lack of caregiving support, and caregiving stress. The themes related to the benefits of caregiving during COVID-19 included: enjoyed the slower pace, increased time to spend together, deepened relationships, recognizing the resilience of family members, and caregiving innovations. Conclusions: Our in-depth study helps social workers understand the nature of caregiving stress during COVID-19, as well as the positive aspects of caregiving, even during a global pandemic.

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A concept analysis of health communication in a home environment: Perspectives of older persons and their informal caregivers

Background: Health communication (HC) is a vast research field focusing on changing health behaviours, and rapidly evolving technology is creating different ways and possibilities to reach target groups and audiences. In the context of home care, a deeper understanding of HC is lacking, specifically for older persons with care needs and their informal caregivers. The aim of this concept analysis is to identify and construct the meaning of HC from the perspective of older persons in need of care in the home environment and their informal caregivers. Materials and methods: This study utilised Rogers’ (2000) Evolutionary Concept Analysis Method (EMCA) to create and construct a meaning of the concept of HC. The EMCA was based on a systematic literature review of scientific articles, using CINAHL, Pubmed and Inspec (2000‐2017). A total of 29 articles were retrieved and analysed. Results: The identified attributes of the concept were as follows: resources of the recipient, influence on decisions and advantages of tailored information. HC was described as both contributing to knowledge as well as being overwhelming where habits and resources influenced the use of information. The attributes led to the following descriptive definition of HC: ‘Tailored HC, based on needs and resources of the recipient influence care decisions’. The home environment influenced HC by habits and interactions between older persons and their informal caregivers. Conclusions: The home environment influenced HC in terms of social aspects of interactions and habits and between the older person and the informal caregiver. Tailored information with the use of technology contributed to knowledge in care of older persons and their informal caregivers. HC was shown to contribute to improve care for older people in their home environment.

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The comprehensive factors affecting the sleep quality in family caregivers of patients with dementia in the community of South Korea

Purpose: The purpose of this study was to provide the comprehensive factors affecting the sleep quality in family caregivers of patients with dementia in South Korea, including patient and caregiver-related factors. Methods: The participant were a total of 156 family caregivers who live with patients with dementia in South Korea. Patient and caregiver-related factors were measured using tools with high reliability. Data collection was performed from May to August 2019, and data were analyzed using descriptive analysis, t-test, ANOVA, Pearson's correlation coefficients, and multiple regression with the SPSS/21.0 program. Results: The significant factors affecting family caregivers’ sleep quality were their depression (β=.52, p<.001) and their education (β=.23, p=.019). Conclusion: There is a need to monitor caregivers’ depression and sleep quality. Future studies, biomarker to monitor caregivers’ sleep quality to achieve objective evidence. There is a need to provide additional education programs to improve the understanding around caregivers' sleep quality especially for caregivers with low level of education. 

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Combining paid work and family care for a patient at the end of life at home: insights from a qualitative study among caregivers in the Netherlands

Background: Population ageing, an emphasis on home-based care of palliative patients and policies aimed at prolonging participation in the labour market are placing a growing demand on working family caregivers. This study aimed to provide insight into experiences with combining paid work and family care for patients at the end of life, factors facilitating and hindering this combination, and support needs. Method: Semi-structured interviews were held between July 2018 and July 2019 with 18 working family caregivers of patients with a life-threatening illness who were living at home. Transcripts were analysed following the principles of thematic analysis. Results: Some family caregivers could combine paid work and family care successfully, while this combination was burdensome for others. Family caregivers generally experienced a similar process in which four domains — caregiver characteristics, the care situation, the work situation and the context — influenced their experiences, feelings and needs regarding either the combination of paid work and care or the care situation in itself. In turn, experiences, feelings and needs sometimes affected health and wellbeing, or prompted caregivers to take actions or strategies to improve the situation. Changes in health and wellbeing could affect the situation in the four domains. Good health, flexibility and support at work, support from healthcare professionals and sharing care tasks were important in helping balance work and care responsibilities. Some caregivers felt ‘sandwiched’ between work and care and reported physical or mental health complaints. Conclusions: Experiences with combining paid work and family care at the end of life are diverse and depend on several factors. If too many factors are out of balance, family caregivers experience stress and this impacts their health and wellbeing. Family caregivers could be better supported in this by healthcare professionals, employers and local authorities.

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Combining a variable‐centered and a person-centered analytical approach to caregiving burden – a holistic approach

Background: Informal caregivers of persons with dementia often experience elevated levels of caregiving burden. However, existing studies tend to use a variable-centered approach to explore it. This study aims to understand the caregiving burden of informal caregivers of persons with dementia in Singapore through a combination of variable-centered and person-centered analytical approaches, and explore the correlates of identified factors and latent classes of caregiving burden. Methods: Zarit Burden Interview was used to gauge the caregiving burden of 282 primary informal caregivers of persons with dementia recruited through convenience sampling in Singapore. Factor analysis and latent class analysis were conducted to identify the latent factors and the latent classes of Zarit Burden Interview, followed by multiple linear regression and multinomial logistic regression to explore their significant correlates. Results: The analyses suggested a 17-item 3-factor structure for Zarit burden interview and three mutually exclusive caregiving burden classes. Regression analyses found that caregiving related variables especially care recipients’ memory and behaviour problems were correlated with both the factors and latent classes of caregiving burden. Conclusions: The combination of these two approaches suggests that caregivers experiencing higher burden on one domain are likely to experience higher burden on the other two domains. This further supports the point that more attention should be given to caregivers who experience an overall high burden. Future research could explore the generalizability of our findings among caregivers elsewhere and explore the type of support needed by caregivers, especially those experiencing high burden.

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Cognitively Impaired Older Persons' and Caregivers' Perspectives on Dementia‐Specific Advance Care Planning

Background/Objectives: Advance care planning (ACP) traditionally involves asking individuals about their treatment preferences during a brief period of incapacity near the end of life. Because dementia leads to prolonged incapacity, with many decisions arising before a terminal event, it has been suggested that dementia‐specific ACP is necessary. We sought to elicit the perspectives of older adults with early cognitive impairment and their caregivers on traditional and dementia‐specific ACP. Design Qualitative study with separate focus groups for patients and caregivers. Setting: Memory disorder clinics. Participants: Twenty eight persons aged 65+ with mild cognitive impairment or early dementia and 19 caregivers. Measurements Understanding of dementia trajectory and types of planning done; how medical decisions would be made in the future; thoughts about these decisions. Results: No participants had engaged in any written form of dementia‐specific planning. Barriers to dementia‐specific ACP emerged, including lack of knowledge about the expected trajectory of dementia and potential medical decisions, the need to stay focused in the present because of fear of loss of self, disinterest in planning because the patient will not be aware of decisions, and the expectation that involved family members would take care of issues. Some patients had trouble engaging in the discussion. Patients had highly variable views on what the quality of their future life would be and on the leeway their surrogates should have in decision making. Conclusions: Even among patients with early cognitive impairment seen in specialty clinics and their caregivers, most were unaware of the decisions they could face, and there were many barriers to planning for these decisions. These issues would likely be magnified in more representative populations, and highlight challenges to the use of dementia‐specific advance directive documents.

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Co-designing a dashboard of predictive analytics and decision support to drive care quality and client outcomes in aged care: a mixed-method study protocol

Introduction: There is a clear need for improved care quality and quality monitoring in aged care. Aged care providers collect an abundance of data, yet rarely are these data integrated and transformed in real-time into actionable information to support evidence-based care, nor are they shared with older people and informal caregivers. This protocol describes the co-design and testing of a dashboard in residential aged care facilities (nursing or care homes) and community-based aged care settings (formal care provided at home or in the community). The dashboard will comprise integrated data to provide an ‘at-a-glance’ overview of aged care clients, indicators to identify clients at risk of fall-related hospitalisations and poor quality of life, and evidence-based decision support to minimise these risks. Longer term plans for dashboard implementation and evaluation are also outlined. Methods: This mixed-method study will involve (1) co-designing dashboard features with aged care staff, clients, informal caregivers and general practitioners (GPs), (2) integrating aged care data silos and developing risk models, and (3) testing dashboard prototypes with users. The dashboard features will be informed by direct observations of routine work, interviews, focus groups and co-design groups with users, and a community forum. Multivariable discrete time survival models will be used to develop risk indicators, using predictors from linked historical aged care and hospital data. Dashboard prototype testing will comprise interviews, focus groups and walk-through scenarios using a think-aloud approach with staff members, clients and informal caregivers, and a GP workshop. Ethics and dissemination: This study has received ethical approval from the New South Wales (NSW) Population & Health Services Research Ethics Committee and Macquarie University’s Human Research Ethics Committee. The research findings will be presented to the aged care provider who will share results with staff members, clients, residents and informal caregivers. Findings will be disseminated as peer-reviewed journal articles, policy briefs and conference presentations.

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A Clinical Bridge between Family Caregivers and Older Adults: The Contribution of Patients’ Frailty and Optimism on Caregiver Burden

Background: The association between caregiver burden and the physical frailty of older adults has been the object of previous studies. The contribution of patients’ dispositional optimism on caregiver burden is a poorly investigated topic. The present study aimed at investigating whether older adults’ multidimensional frailty and optimism might contribute to the burden of their family caregivers. Methods: The Caregiver Burden Inventory was used to measure the care-related burden of caregivers. The multidimensional frailty status of each patient was evaluated by calculating a frailty index, and the revised Life Orientation Test was used to evaluate patients’ dispositional optimism. The study involved eighty family caregivers (mean age 64.28 ± 8.6) and eighty older patients (mean age 80.45 ± 7.13). Results: Our results showed that higher frailty status and lower levels of optimism among patients were significantly associated with higher levels of overall burden and higher burden related to the restriction of personal time among caregivers. Patients’ frailty was additionally associated with caregivers’ greater feelings of failure, physical stress, role conflicts, and embarrassment. Conclusion: Understanding the close connection between patient-related factors and the burden of caregivers appears to be an actual challenge with significant clinical, social, and public health implications.

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Challenges and approaches to involving family caregivers in primary care

Objective: Older adults are commonly accompanied to routine medical visits. This study identifies challenges and explores approaches to managing patient-family interactions in primary care. Methods: Semi-structured interviews were conducted with primary care clinicians and staff (N = 30) as well as older adult patients and family caregivers (N = 40). Interviews were analyzed using content analysis. Results: Three major challenges to patient-family interactions were identified: navigating patient autonomy and family motivation to participate; adjudicating patient-family disagreements; and minimizing obtrusive behaviors by caregivers. Three approaches to managing patient-family interactions were identified. Collaborating involved non-judgmental listening, consensus-building, and validation of different perspectives. Dividing involved separating the patient and family member to elicit confidential information from one member of the dyad. Focusing involved re-directing the conversation to either the patient or family member while minimizing input from the other. Approaches varied by patients’ cognitive status and overall health condition. In general, patients and caregivers expressed the most positive attitudes toward collaborating and patient-directed focusing approaches. Conclusion: Primary care clinicians use varied approaches to managing their interactions with patient-family dyads. Patients and caregivers generally prefer those approaches that involve collaborative rather than individual discussions. Practice implications: Findings suggest the potential for the development of communication-focused interventions to promote positive clinician-patient-family interactions.

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Caring for those who care for dependent older adults: for a necessary and urgent policy

The situation of caregivers and family caregivers of dependent older adults is presented and discussed, highlighting their dedication, problems, and possible recommendations to value them. The task of caring is known to be eminently feminine, invisible, unpaid, but affects society as a whole. Policies of some European countries, Canada, and the United States in favor of male and female caregivers are described. However, most existing support models have gaps. The laws and regulations enacted have been poorly comprehensive, inorganic, and the family remains responsible for long-lived relatives who have lost their autonomy. In many countries, besides other measures, the tendency is to integrate the family care as the first PHC level, universalizing support to caregivers. One must not be forgotten that the tendency to keep dependent older adults at home is acquiescence to their desire, but it also hides the delegation of responsibility from the State to families through dehospitalization and deinstitutionalization policies. In Brazil, the issue has not yet entered the public policy radar, although it is urgent because of the accelerated increase of the elderly population, particularly those aged 80 and over. 

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“Caring for the Elderly is Very Difficult”: Challenges and Coping Strategies of Caregivers in Urban Poor Accra, Ghana

Background: This study is part of a broader phenomenological study on the experiences of family caregivers and their care recipients. There is a general paucity of research on the experiences of primary and secondary caregivers, and the negative impact of elderly care on caregivers in the urban poor settings in Ghana. This study explored primary and secondary caregivers’ challenges and coping strategies in the urban poor context in Accra, Ghana. Methods: This study was conducted in Ga Mashie. Thirty-one caregivers were interviewed. A phenomenological analysis was conducted using NVivo 10. Findings: Primary and secondary caregivers experienced economic, physical, social, and psychological burdens. Also, caregivers used spirituality and perseverance to cope with their challenges. Conclusions: The findings demonstrate that caregivers’ challenges varied by type of caregiver. Researchers and policymakers should consider the type of caregiver when designing interventions to mitigate the negative impacts of family caregiving on caregivers.

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Carers of older Australians: unmet support needs and carer well-being

Background: Primary carers play an important role in supporting the Australian Government's policy of 'ageing in place' or encouraging people to receive care in their own homes or communities rather than in institutions. Supporting carers in their role is therefore an important aspect of the policy's success. Findings: Despite numerous programs in place, this study finds that among carers of older Australians, a relatively high proportion (39%) cite unmet needs in their carer role, including a need for financial support, physical assistance, emotional support, improvement in carer health and more respite care. Concerningly, unmet support needs were shown to be strongly associated with markers of poor carer well-being, including an almost 2-fold increase in odds of poor carer satisfaction (odds ratio (OR) 1.77, 95% confidence interval (CI) 1.24-2.51), a 4- to 5-fold increase in the odds of changes to physical and emotional well-being (OR 5.29, 95% CI 3.83-7.31), deterioration in financial situation (OR 4.60, 95% CI 3.26-6.48) and strained carer-recipient relationship (OR 3.79, 95% CI 2.39-6.01).

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Carers' involvement in telecare provision by local councils for older people in England: perspectives of council telecare managers and stakeholders

Background: This paper explores telecare manager and other 'stakeholder' perspectives on the nature, extent and impact of family and other unpaid/informal carers' involvement in the provision of telecare equipment and services for older people. Methods: Data used in the paper are derived from a larger study on telecare provision by local councils in England. The paper aims to add to the growing evidence about carers' engagement with electronic assistive technology and telecare, and considers this in the context of typologies of professionals' engagement with carers. How carers are involved in telecare provision is examined primarily from the perspectives of senior managers responsible for telecare services who responded to an online survey and/or were interviewed in 2016 as part of a wider study. The perspectives of three unpaid carers were captured in a separate strand of the main study, which comprised more detailed case study interviews within four selected councils. Thematic and comparative analysis of both qualitative and quantitative survey data revealed the varied involvements and responsibilities that carers assumed during the telecare provision process, the barriers that they needed to overcome and their integration in local council strategies. Results: Findings are discussed in the context of Twigg and Atkin's typology of carer support. They suggest that carers are mainly perceived as 'resources' and involvement is largely taken for granted. There are instances in which carers can be seen as 'co-workers': this is mainly around responding to alerts generated by the telecare user or by monitored devices, but only in those councils that fund response services. Though some participants felt that telecare devices could replace or 'supersede' hands-on care that involved routine monitoring of health and wellbeing, it was also acknowledged that its use might also place new responsibilities on carers. Furthermore, the study found that meeting carers' own rights as 'co-clients' was little acknowledged.

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“Caregiving is like on the job training but nobody has the manual”: Canadian caregivers’ perceptions of their roles within the healthcare system

Background: Stepping into the role of an unpaid caregiver to offer help is often considered a natural expectation of family members or friends. In Canada, such contributions are substantial in terms of healthcare provision but this comes at a considerable cost to the caregivers in both health and economic terms. Methods: In this study, we conducted a secondary analysis of a collection of qualitative interviews with 39 caregivers of people with chronic physical illness to assess how they described their particular roles in caring for a loved one. We used a model of caregiving roles, originally proposed by Twigg in 1989, as a guide for our analysis, which specified three predominant roles for caregivers – as a resource, as a co-worker, and as a co-client. Results: The caregivers in this collection spoke about their roles in ways that aligned well with these roles, but they also described tasks and activities that fit best with a fourth role of ‘care-coordinator’, which required that they assume an oversight role in coordinating care across institutions, care providers and often advocate for care in line with their expectations. For each of these types of roles, we have highlighted the limitations and challenges they described in their interviews. Conclusions: We argue that a deeper understanding of the different roles that caregivers assume, as well as their challenges, can contribute to the design and implementation of policies and services that would support their contributions and choices as integral members of the care team. We provide some examples of system-level policies and programs from different jurisdictions developed in recognition of the need to sustain caregivers in their role and respond to such limitations.

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Caregiving for ageing parents: A literature review on the experience of adult children

Background: More and more adults in their fifties and sixties are confronted with the need to support their ageing parents. Although many aspects of filial caregiving have been researched, a well-documented and comprehensive overview of the caregiving experience is lacking. Aim: This study aims for a better understanding of the caregiving experience of adult children by generating an overview of main themes in international research. Method: A literature review of qualitative studies, focusing on the experiences of adult children caring for their ageing parents, was performed. The electronic EBSCO databases Academic Search Premier, CINAHL and PsycINFO, and Google Scholar were searched to identify relevant qualitative studies published between 2000 and 2017. The 'SPIDER' eligibility criteria directed the approach. The quality of studies included was screened with the assessment sheet designed by Hawker and colleagues. The experiences reported were analysed and themes were synthesized. Ethical consideration: Ethical requirements were respected in every phase of the research process. Findings: Nineteen qualitative studies met the inclusion criteria. The quality of the relationship with the parent appears to be an important determinant of the children's caregiving experience. Within this context, three themes were found: caregiving as an emotional rollercoaster, a normatively demanding experience and an opportunity for personal development. Discussion: Children caring for their ageing parents have to deal with a wide range of contradicting and conflicting norms and values. Implications for healthcare professionals and future research have been discussed. Conclusion: Caring for ageing parents is a continuous quest for giving the best possible care and living up to one's personal values, within the context of the parent's declining health. Professionals who support filial caregivers should address not only practical responsibilities but also the normative questions and moral considerations caregivers are dealing with.

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Caregiving during the Time of COVID-19: A Multi-State Qualitative Study of Family Caregiver Experiences and Decision-Making

Research Objective: COVID-19 poses unique challenges to family caregivers. This study explores how family caregivers for older adults with cognitive impairments experience and make decisions about caregiving during a global pandemic. Study Design: Using purposive sampling, family caregivers participated in open-ended qualitive interviews (2019–2020), until thematic saturation was reached. Questions broadly examined caregivers' experiences and decisions, focusing on decisions made around type of care setting. Questions about responses to the Pandemic were added as events unfolded. States were selected to represent variation in Home and Community Based Service (HCBS) expenditures as a percentage of total Medicaid long-term services and support expenditures. They include; Arkansas, Florida, Illinois, Minnesota, New York, North Carolina, and Oregon. All participants were actively involved in the care of someone with dementia or another cognitive impairment over the age of 60. Population Studied 63 family caregivers were interviewed across eight states. About 89% of participants were female, 78% white, 10% black, 5% Asian, 3% biracial, 2% Native American. 36% of respondents reported that those they care for receive Medicaid. Principal Findings: This analysis focused on several COVID-related caregiver decisions: changes in care, challenges with care utilization and access, and policies or changes in care that were helpful during the pandemic were of focus. Four key themes emerged. First, family caregivers experienced communication challenges with long term care facilities often due to COVID-19 restriction policies. They reported an inability to asses care quality, participate in medical appointments, or communicate with their loved ones. Second, some families chose to cease the care supports they were receiving. Participants cited concern about the virus itself, and about indirect pandemic effects such as their loved ones experiencing confusion, loneliness, and poor care. Third, many respondents expressed the desire to avoid future nursing care, and expressed hesitancy towards seeking HCBS until the pandemic is curbed. Finally, many caregivers reported that telemedicine and other remote health care interventions improved their workload and service access. Conclusions: We examined how the pandemic has impacted decision-making among caregivers of older adults with cognitive impairments. Family caregivers experienced significant concern about COVID-19 itself, and about the indirect consequences of caregiving caused by the pandemic. Caregivers have also shown flexibility and adaptability in ceasing selected services, contingently continuing services, and utilizing telemedicine and other remote healthcare interventions to protect their loved ones. Many family caregivers utilized remote health care interventions such telemedicine, no-contact prescription and grocery delivery. Such measures improved service access and reduced caregiver workload. Implications for Policy or Practice Given the persistent challenges posed by COVID-19, long term service organizations have an opportunity to enhance their policies to meet the needs of caregivers and those they care for. First, there is a need to expand and continue telemedicine and other remote healthcare interventions, while adapting these technologies to the needs of families. Second, bolstering communication supports when on lock down in nursing facilities may reduce confusion and feelings of isolation. Finally, procedures are needed for safe and trusted pathways to utilize HCBS and nursing care during a pandemic including sufficient PPE, increased staffing, and utilization of evidence-based protocols. 

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Caregiving burnout of community-dwelling people with dementia in Hong Kong and New Zealand: a cross-sectional study

Background: Informal caregiving for people with dementia can negatively impact caregivers’ health. In Asia-Pacific regions, growing dementia incidence has made caregiver burnout a pressing public health issue. A cross-sectional study with a representative sample helps to understand how caregivers experience burnout throughout this region. We explored the prevalence and contributing factors of burnout of caregivers of community-dwelling older people with dementia in Hong Kong (HK), China, and New Zealand (NZ) in this study. Methods: Analysis of interRAI Home Care Assessment data for care-recipients (aged ≥65 with Alzheimer’s disease/other dementia) who had applied for government-funded community services and their caregivers was conducted. The sample comprised 9976 predominately Chinese in HK and 16,725 predominantly European in NZ from 2013 to 2016. Caregiver burnout rates for HK and NZ were calculated. Logistic regression was used to determine the adjusted odds ratio (AOR) of the significant factors associated with caregiver burnout in both regions. Results: Caregiver burnout was present in 15.5 and 13.9% of the sample in HK and NZ respectively. Cross-regional differences in contributing factors to burnout were found. Care-recipients’ ADL dependency, fall history, and cohabitation with primary caregiver were significant contributing factors in NZ, while primary caregiver being child was found to be significant in HK. Some common contributing factors were observed in both regions, including care-recipients having behavioural problem, primary caregiver being spouse, providing activities-of-daily-living (ADL) care, and delivering more than 21 h of care every week. In HK, allied-health services (physiotherapy, occupational therapy and speech therapy) protected caregiver from burnout. Interaction analysis showed that allied-health service attenuates the risk of burnout contributed by care-recipient’s older age (85+), cohabitation with child, ADL dependency, mood problem, and ADL care provision by caregivers. Conclusions: This study highlights differences in service delivery models, family structures and cultural values that may explain the cross-regional differences in dementia caregiving experience in NZ and HK. Characteristics of caregiving dyads and their allied-health service utilization are important contributing factors to caregiver burnout. A standardized needs assessment for caregivers could help policymakers and healthcare practitioners to identify caregiving dyads who are at risk of burnout and provide early intervention.

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Caregiving burden and depressive symptoms among ultra‐orthodox Jews: The moderating role of sense of community

Background: Individuals who care for aging parents or relatives often experience caregiving burden, which is associated with various negative psychological outcomes. During the current COVID‐19 pandemic, the conflict between caring for older relatives and taking the necessary personal precautions against infection may be exacerbated among individuals who belong to social groups, which perceive caring for others as an indispensable cultural construct. Accordingly, the current study examined whether feeling a part of one's community moderates the association between caregiving burden and depressive symptoms among the ultra‐orthodox society in Israel. Methods: A convenience sample of 358 ultra‐orthodox participants was collected (age range 30–70; M = 49.50, SD = 10.24), all of whom completed scales assessing caregiving burden, sense of community, and depressive symptoms. Results: Results demonstrated that high caregiving burden and low sense of community were associated with increased depressive symptoms. Moreover, sense of community moderated the caregiving burden‐depressive symptoms link, as the latter positive association was significant only among individuals reporting low levels of sense of community. Conclusions: The discussion highlights the importance of sense of community as a beneficial personal and social factor, which mitigates the negative psychological consequences of caregiving burden among such societies.

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Caregivers of Older Persons in Jamaica: Characteristics, Burden, and Associated Factors

Objective: The objective of this study was to determine and characterize caregiver burden among caregivers of community-dwelling older persons in Jamaica. Method: A nationally representative cross-sectional study was done among persons providing noninstitutional care for a single person (≥60 years). The Zarit Burden Interview (ZBI) and a structured questionnaire were administered to 180 caregivers from four geographic health regions. Results: The ZBI scores ranged from 0 to 56 (median = 15). Independently associated factors were relationship to care recipient and age. Children/grandchildren had higher caregiver burden scores than formally employed caregivers (odds ratio = 2.9: 95% confidence interval: [1.02, 8.34]). Compared with caregivers 35 to 44 years, those aged 45 to 65 were almost 5 times more likely to report higher caregiver burden scores. Conclusion: Caregiver burden as identified by the ZBI was low. Age (45–65 years) and being the child/grandchild of the care recipient were independently associated with greater caregiver burden. Interventions to address caregiver burden must embrace strategies that recognize that these factors.

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Caregivers of Frail Elders: Updating a National Profile

Purpose: Family caregivers comprise the backbone of long-term-care provision in the United States, yet little is known about how the composition and experience of family caregiving has changed over time. Design and Methods: Data are drawn from the 1989 and 1999 National Long-Term Care Survey and Informal Caregiver Survey to develop nationally representative profiles of disabled older adults and their primary informal caregivers at two points in time. Results: The proportion of chronically disabled community-dwelling older adults who were receiving informal assistance from family or friends declined over the period of interest, whereas the proportion receiving no human help increased. On average, recipients of informal care were older and more disabled in 1999 than in 1989. Primary caregivers were children (41.3%), spouses (38.4%), and other family or friends (20.4%); children were more likely and others less likely to serve as primary caregivers in 1999 relative to 1989. Primary caregivers provided frequent and high levels of help at both points in time. A striking increase was found (from 34.9% to 52.8%) in the proportion of primary caregivers working alone, without secondary caregiver involvement. Implications: In the context of projected demographic trends and budgetary constraints to public health insurance programs, these data underscore the importance of identifying viable strategies to monitor and support family caregivers in the coming years. 

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Caregivers' Experience at an Integrated Memory Care Clinic

Background: The Integrated Memory Care Clinic is a patient-centered medical home led by advanced practice RNs (APRNs) who provide dementia care and primary care simultaneously and continuously. Methods: We explored the experiences of 12 informal caregivers of persons living with dementia during their first year at the Clinic. Data were analyzed via directed content analysis. Results: Caregivers described the Clinic as “the only place you should go to for dementia [care].” Caregivers felt a sense of belonging to the Clinic, valued APRNs' competence and staff's dedication, and round-the-clock telephone access to APRNs. Caregivers also acknowledged that “we're all out here swimming on our own.” They expressed their sense of being overwhelmed and needing more services and medical and non-medical resources, and more prognostic information on dementia. Conclusions: Although the Clinic is beneficial for caregivers, caregiving demands exceed the supply of services and resources at the Clinic. 

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Caregiver support and place of death among older adults

Background/objectives: As home becomes the most common place of death in the United States, information about caregiver support and place of death is critical to improve patient and caregiver experiences at end of life. We seek to examine (1) the association between family care availability and place of death; and (2) caregiving intensity associated with place of death. Design: 2017 National Health and Aging Trends Study and National Study of Caregiving; nationally representative cross‐sectional study of deceased older adults and last‐month‐of‐life (LML) caregivers. Setting: United States; all places of deaths. Participants: Three‐hundred and seventy‐five decedents and 267 LML caregivers. Measurements: Place of death (home, hospital, and nursing or hospice facility), family care availability (spouse/partner, household size, number of daughters and sons), caregiving intensity (hours of help provided at LML and a binary indicator for high care‐related emotional difficulty). Results: 38.9% of older adults died at home, followed by hospital (33.1%), and nursing or hospice facility (28.0%). In an adjusted multinomial logistic regression, decedents with larger household size (odds ratio [OR]: 0.441; 95% confidence interval [CI]: 0.269–0.724) and more daughters (OR: 0.743 [95% CI: 0.575–0.958]) had lower odds of dying in nursing or hospice facility relative to dying at home. For older adults who died at home, caregivers provided 209.8 h of help at LML. In contrast, when death occurred in nursing or hospice facility, caregivers provided 91.6 fewer hours of help, adjusted for decedent and caregiver characteristics. Dying in hospital was associated with higher odds of caregiver emotional difficulty relative to home deaths (OR: 4.093 [95% CI: 1.623–10.323]). Conclusions: Household size and number of daughters are important determinants of place of death. Despite dying at home being associated with more hours of direct caregiving; caregiver emotional strain was experienced as higher for hospital deaths. Better support services for end‐of‐life caregivers might improve patient and caregiver experiences for home and hospital deaths.

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Caregiver economics: A framework for estimating the value of the American Jobs Plan for a caring infrastructure

The authors present a method for estimating the value and cost effectiveness of the U.S. government initiative known as the American Jobs Plan, particularly regarding the program's allocation of funds targeted toward the expansion of access to home and community-based services (HCBS) for older citizens with disabilities.

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Caregiver Characteristics and Outcomes Associated With Level of Care Complexity for Older Adults

Background: Care in the home is increasingly complex, with family caregivers now expected to take on aspects of care previously managed by nurses and other health professionals. Method: In a national sample of caregivers of older adults, we examined predictors and outcomes of level of care (low, medium, high) based on caregiving hours and counts of activities of daily living (ADLs) and instrumental ADLs supported. Results: Characteristics associated with high level of care include Hispanic or “other” race/ethnicity, being unemployed, and specific care recipient conditions (e.g., Alzheimer's disease/dementia, cancer, mobility limitations). High compared to low level of care is also associated with caregiving difficulty and unmet needs. Conclusions: These findings underscore the need for targeted interventions and nursing research to further understand the features and dynamics of care complexity. Such research can inform family-centered interventions, health care system redesign, and health policies to support family caregivers of older adults engaged in complex care. 

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Caregiver Burden with Alzheimer’s and Dementia Patients: A Systematic Literature Review

Background: As the aging population increases, the rates of degenerative diseases associated with advanced age, such as Alzheimer’s disease and dementia, also rise. Thus, the caregiver population grows in response, increasing the rates of caregiver burden. Caregivers of older adults are usually family members, and providing care to older adults with Alzheimer’s disease and dementia can be very physically and emotionally depleting for the caregivers, leading to negative consequences on the physical and mental health of the caregivers; subsequently leading to caregiver burden. Methods: This systematic literature review examined articles within the APA PsychInfo database related to informal caregivers of Alzheimer’s and dementia patients, caregiver burden, risk factors associated with caregiver burden such as gender, kinship, cohabitation, and marriage status, and coping strategies, interventions, and resources that aid in mitigation of caregiver burden for these types of caregivers. Findings: This search yielded 26 studies that were included based on having met the eligibility criteria. Findings suggest that there are several risk factors associated with increased rates of caregiver burden in this caregiver population. Results addressed the benefits of coping strategies, interventions, and accessible resources on informal caregivers’ QOL and impacts on caregiver burden. Implications regarding ideal and accessible coping strategies and appropriate interventions for informal caregivers of individuals diagnosed with Alzheimer’s disease and dementia was addressed. 

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Caregiver Burden and Compassion Fatigue Among Arab Family Caregivers of Older Relatives

Objectives: To examine the associations and the mechanisms between caregiver burden and compassion fatigue among family caregivers. Method: A cross-sectional study comprising 300 family caregivers of older relatives in Arab communities in Israel was conducted. Data were collected via face-to-face interviews in Arabic using structured questionnaires to identify factors associated with compassion fatigue (using a secondary traumatization stress scale). Bootstrapping with resampling strategies tested the multiple mediator model. Main findings: The results show a significant total effect of caregiver burden on compassion fatigue (b = 3.79, t (300) = 3.47, p <.001; R 2 =.50). This association was found to be partially mediated by family support (B =.81, 95% confidence interval [CI] = 0.23, 1.85) and disengagement coping (B =.97, 95% CI = 0.19, 2.14), but was not mediated by engagement coping strategies. Conclusion: Compassion fatigue is prevalent among family caregivers and requires more attention from professionals and policymakers.

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Caregiver Burden and Associated Factors for the Respite Care Needs among the Family Caregivers of Community Dwelling Senior Citizens in Chiang Mai, Northern Thailand

Background: Families are the backbone of caregiving for older adults living in communities. This is a tradition common to Thailand and many low- and middle-income countries where formal long-term care services are not so available or accessible. Therefore, population aging demands more and more young people engaging as family caregivers. Informal caregiving can become an unexpected duty for anyone anytime. However, studies measuring the burden of informal caregivers are limited. We aimed to determine the caregiver burden, both from the perspective of the caregivers as well as that of their care recipients. Method: We used the baseline survey data from a cluster randomized controlled trial providing a community integrated intermediary care (CIIC) service for seniors in Chiang Mai, Thailand, TCTR20190412004. Study participants were 867 pairs of older adults and their primary family caregivers. Descriptive analysis explored the characteristics of the caregivers and binary logistic regression identified factors influencing the caregivers’ burden. Results: The mean age of family caregivers was 55.27 ± 13.7 years and 5.5% indicated the need for respite care with Caregiver Burden Inventory (CBI) scores ≥24. The highest burden was noted in the time-dependence burden domain (25.7%). The significant associated factors affecting CBI ≥24 were as follows: caregivers older than 60 years, being female, current smokers, having diabetes, and caring for seniors with probable depression and moderate to severe dependency. Conclusions: A quarter of caregivers can have their careers disturbed because of the time consumed with caregiving. Policies to assist families and interventions, such as respite service, care capacity building, official leave for caregiving, etc., may reduce the burden of families struggling with informal care chores. Furthermore, caregiver burden measurements can be applied as a screening tool to assess long-term care needs, complementing the dependency assessment. Finally, implementation research is required to determine the effectiveness of respite care services for older people in Thailand.

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The capacity of informal caregivers in the rehabilitation of older people after a stroke

Objective: To characterize informal caregivers of dependent older people after a stroke related to aspects of care, and to describe the activities performed and the difficulties faced by these caregivers. Methods: Cross-sectional, descriptive study, held in southern Brazil with 190 informal caregivers of older adults after stroke. The sociodemographic data instrument and the Capacity Scale for Informal Caregivers of Elderly Stroke Patients (ECCIID-AVC), adapted and validated for use in Brazil by Dal Pizzol et al., were used. Results: Most caregivers were women (82.6%) or children (56.3%), had average schooling of 9.6 years, and the majority (68.3%) provided care for people with moderate to severe disability. The main activities carried out included: providing materials and/or support for eating (99%), dressing (98.4%), and administering medications (96.2%). Caregivers had the most difficulty with transferring and positioning activities. Conclusion: Most caregivers have adequate capacity to provide essential care to the dependent older adult after a stroke. However, a significant portion had difficulty in the activities of transferring and positioning the older person due to the lack of guidance regarding the posture to carry out these activities. The assessment of nurses regarding the activities performed and the difficulties faced by caregivers is an important strategy to identify problems and effectively attend to the needs of these individuals at all levels of health care.

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Burdens and Educational Needs of Informal Caregivers of Older Adults With Urinary Incontinence: An Internet-Based Study

Purpose: The purpose of this study was to describe the burden and educational needs of informal caregivers of care-dependent older adults with urinary incontinence (UI). Design: A cross-sectional, descriptive survey of informal caregivers recruited through Google Ads was performed. Methods: An online survey, including the Overactive Bladder-Family Impact Measure, was used to assess five areas of the experience of the informal caregiver that may be affected by caring for a person with UI and their educational needs. Findings: Respondents (n = 77) reported a substantial impact of their care recipients' UI on their lives, with concern, travel, and social subscales most affected. However, 42% never sought treatment on behalf of their care recipient. Educational needs included UI treatment strategies and guidance to select appropriate supplies. Conclusions: Caregivers underreported their care recipient's UI and need substantially more support from healthcare providers to manage the condition. Clinical Relevance: Nurses should assess for UI among care-dependent older adults and, if present, provide information and strategies to lessen the impact on caregiver lives.

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Bridging the gap: A mixed methods study investigating caregiver integration for people with geriatric syndrome

Introduction: Transitions of care between acute hospital and community settings are points of vulnerability for people with geriatric syndrome. Routinely including informal caregivers into the transition processes may mitigate risk. Guidance for operational aspects of caregiver inclusion is currently lacking in healthcare policy and fails to address the barriers faced by caregivers and healthcare professionals. Methods: A questionnaire and a semi-structured interview were piloted with acute care physiotherapists who facilitate patient discharge into community settings. The questionnaire was analysed using summary statistics and interviews were thematically analysed by researchers, using NVivo 12 software. Results: Questionnaire responses indicated mixed satisfaction with current caregiver integration by the multidisciplinary team. Four themes were shaped in the interviews: inconsistent caregiver engagement, individuals working in a system, an outdated model of care, and invisible care gaps. Discussion: Feedback loops constructed from participant questionnaires and interview responses informed the identification of barriers and solutions. These are system wide and address automated integration, cultural shift, reimbursement models, and flexible structures to enhance informal caregiver participation. Future research is urgently required to translate, implement, and evaluate enhanced caregiver integration to ensure sustainable, person-centred healthcare delivery. 

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Behavioural and psychological symptoms of dementia in patients with Alzheimer’s disease and family caregiver burden: a path analysis

Background: Studies reported the relationship between behavioural and psychological symptoms of dementia (BPSD), cognitive function, caregiver burden, and therapeutic effects. However, the causal relationship between BPSD in community-dwelling patients with Alzheimer’s disease (AD) and caregiver burden is yet to be established. This study aimed to classify BPSD in patients with AD and identify the relationship between BPSD and the factors affecting family caregiver burden. Methods: Path analysis was conducted at a neurology outpatient clinic of a tertiary general hospital in South Korea. The medical records of 170 patients, aged ≥50 years, diagnosed with or suspected for AD were retrospectively reviewed. We investigated cognitive function (Korean version of the Mini-Mental-State Exam), dementia stages (Korean version of the Expanded Clinical Dementia Rating scale), depression (Short-form Geriatric Depression Scale-Korea), activities of daily living (ADL; Korean version of the Barthel Activities of Daily Living index), instrumental activities of daily living (IADL; Seoul-Instrumental Activities of Daily Living), and BPSD and caregiver burden (Korean Neuropsychiatric Inventory). Considering the characteristic features of BPSD with various symptoms, BPSD was classified using factor analysis. Factor extraction was performed using principal component analysis, followed by Varimax factor rotation. Results: Mean total BPSD score was 17.66 ± 20.67, and the mean score for family caregiver burden was 9.65 ± 11.12. Symptom cluster-1 (hyperactivity symptoms) included disinhibition, irritability, and agitation/aggression. Symptom cluster-2 (psychosis symptoms) included hallucinations, anxiety, elation/euphoria, delusions, and depression/dysphoria. Symptom cluster-3 (physical behaviour symptoms) included appetite and eating abnormalities, apathy/indifference, aberrant motor behaviour, sleep, and night-time behaviour disturbances. Dementia stages, ADL, and IADL had indirect effects on family caregiver burden through hyperactivity, psychosis, and physical behaviour symptoms, indicating that BPSD exerted a complete mediating effect. Conclusions: Unlike previous studies, we classified BPSD symptoms into similar symptom clusters to evaluate its effect on caregiver burden, rather than collectively investigating the 12 symptoms of BPSD. As the dementia stage worsens, symptom clusters in BPSD serve as a medium between ADL and IADL degradation and for the increase in caregivers’ burden. The development and implementation of therapeutic, nursing interventions, and policies focusing on dementia stages, ADL, and IADL, delaying and preventing BPSD can alleviate family caregivers’ burden.

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Barriers and facilitators for shared decision making in older patients with multiple chronic conditions: a systematic review

Background: The aim of this study was to describe barriers and facilitators for shared decision making (SDM) as experienced by older patients with multiple chronic conditions (MCCs), informal caregivers and health professionals. Methods: A structured literature search was conducted with 5 databases. Two reviewers independently assessed studies for eligibility and performed a quality assessment. The results from the included studies were summarized using a predefined taxonomy. Results: Our search yielded 3838 articles. Twenty-eight studies, listing 149 perceived barriers and 67 perceived facilitators for SDM, were included. Due to poor health and cognitive and/or physical impairments, older patients with MCCs participate less in SDM. Poor interpersonal skills of health professionals are perceived as hampering SDM, as do organizational barriers, such as pressure for time and high turnover of patients. However, among older patients with MCCs, SDM could be facilitated when patients share information about personal values, priorities and preferences, as well as information about quality of life and functional status. Informal caregivers may facilitate SDM by assisting patients with decision support, although informal caregivers can also complicate the SDM process, for example, when they have different views on treatment or the patient’s capability to be involved. Coordination of care when multiple health professionals are involved is perceived as important. Conclusions: Although poor health is perceived as a barrier to participate in SDM, the personal experience of living with MCCs is considered valuable input in SDM. An explicit invitation to participate in SDM is important to older adults. Health professionals need a supporting organizational context and good communication skills to devise an individualized approach for patient care.

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Balneotherapy with a psychoeducation program for the promotion of a balanced care in family caregivers of older adults

Background: This study aimed to analyze the efficacy of an intervention program for informal caregivers of elderly dependent that combined balneotherapy with group psychoeducation (BT-PE) based on the balanced care model. Method: The BT-PE intervention (N = 124) was compared with a comparison group only exposed to balneotherapy (BT) (N = 76). The two modalities included both primary and secondary informal caregivers. A three-way mixed ANOVA was conducted to dete