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Caring for older people

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

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

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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 determine the effects of two between-subjects´ factors (intervention group and caregiver type) and one within-subjects´ factor (time) on burden, depression, anxiety, maladjustment and care satisfaction. Results: Results showed less burden and more care satisfaction in both primary and secondary caregivers participating in the BT-PE program after the interventions. Primary caregivers also showed lower levels of maladjustment in the experimental group at post-intervention. Although depressive symptoms and anxiety decreased significantly in both intervention groups, BT-PE did not show lower scores compared with the application of sole BT. Conclusion: The relevance of caregivers´ psychoeducation on the balanced care model and its combination with balneotherapy is highlighted. 

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Association between primary caregiver type and mortality among Chinese older adults with disability: a prospective cohort study

Background: Socio-demographic transitions have dramatically changed the traditional family care settings in China, caused unmet care needs among older adults. However, whether different primary caregiver types have different influences on disabled older adults’ health outcomes remain poorly understood. We aimed to examine the association between the type of primary caregiver (e.g., spouse and children) and death among community-dwelling Chinese older adults disabled in activities of daily living. Methods: We used data from Chinese Longitudinal Healthy Longevity Survey. The analytic sample comprised 4278 eligible adults aged ≥ 80 years. We classified primary caregiver type into five categories: spouse, son/daughter-in-law, daughter/son-in-law, grandchildren, and domestic helper. We used Cox regression model to examine the association between primary caregiver type and all-cause mortality. Covariates included age, sex, residence, years of education, co-residence status, financial independence, whether living with children, number of ADL disability, number of chronic conditions, and self-reported health, cognitive impairment, and caregiving quality. Results: Married older adults whose primary caregivers were son/daughter-in-law had a 38% higher hazard of death than those who had spouse as the primary caregiver. Married men who received care primarily from son/daughter-in-law or daughter/son-in-law had a 64 and 68% higher hazard of death, respectively, than those whose primary caregiver was spouse. The association between primary caregiver type and mortality among widowed older adults differed between urban and rural areas. Urban residents who had domestic helpers as the primary caregiver had an 16% lower hazard of death, while those living in rural areas had a 50% higher hazard of death, than those having son/daughter-in-law as the primary caregiver. Conclusions: The quality of care of the primary caregiver may be a risk factor for mortality of disabled older adults in China. Interventions are necessary for reducing unmet needs and managing care burden.

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Association between family caregivers and depressive symptoms among community-dwelling older adults in Japan: A cross-sectional study during the COVID-19 pandemic

Objectives: Novel coronavirus disease (COVID-19) pandemic could increase the mental health burden of family caregivers of older adults, but related reports are limited. We examined the association between family caregiving and changes in the depressive symptom status during the pandemic. Methods: This cross-sectional study included 957 (mean age [standard deviation] = 80.8 [4.8] years; 53.5% females) community-dwelling older adults aged ≥ 65 years from a semi-urban area of Japan, who completed a mailed questionnaire. Based on the depressive symptom status assessed with the Two-Question Screen between March and October 2020, participants were classified into four groups: “non-depressive symptoms,” “incidence of depressive symptoms,” “remission from depressive symptoms,” or “persistence of depressive symptoms.” Participants were assessed in October 2020 for the family caregiving status, caregiving role, the severity of care recipients’ needs, and increased caregiver burden during the pandemic, each with the simple question. Multinomial logistic regression analysis was applied to obtain the odds ratios (ORs) and 95% confidence intervals (CIs) for changes in depressive symptom status. Results: Compared to non-caregivers, family caregivers were associated with the incidence (OR [95% CI] = 3.17 [1.55–6.51], p < 0.01) and persistence of depressive symptoms (OR [95% CI] = 2.39 [1.30–4.38], p < 0.01). Primary caregivers, caregivers for individuals with severe care needs, and caregivers with increased burden during the pandemic had a high risk of depressive symptoms. Conclusions: Family caregivers had a high risk of depressive symptoms during the pandemic. Our findings highlight the need for a support system for family caregivers. 

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Association between direct interpersonal involvement with a dying family member and discussions regarding advance care planning among Japanese older adults

Aim: There is growing recognition of the need to hold advance care planning discussions. Older adults who have direct interpersonal involvement with dying family members might begin to consider their own end‐of‐life care. This study examined the associations between experiences of being with a dying family member and advance care planning discussions among Japanese older adults. Methods: This study examined data from a previous self‐administered questionnaire survey carried out among outpatients aged ≥65 years. All participants were visitors of a community hospital in Japan, with data being collected over a 1‐week period in July 2016. The main exposure was experiences of being with dying family members, while the outcome was advance care planning discussions with the family members and/or their physician. We analyzed the associations between experiences of being with dying family members and advance care planning discussions through log‐binomial regression models adjusted for possible sociodemographic confounders. Results: Of the 302 respondents included for analysis, 96 (32%) had experiences of being with dying family members, while 179 (59%) held advance care planning discussions. Respondents with said experiences were more likely to have discussions than those without experiences (fully adjusted prevalence ratio 1.31, 95% confidence interval 1.04–1.65). Subgroup analyses showed no significant interaction effects between experiences of being with dying family members and the covariates. Conclusions: Direct interpersonal involvement with dying family members might facilitate advance care planning discussions among Japanese older adults. Our results should help healthcare providers recognize individuals who are unlikely to have discussions. 

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Association between direct interpersonal involvement with a dying family member and discussions regarding advance care planning among Japanese older adults

Aim: There is growing recognition of the need to hold advance care planning discussions. Older adults who have direct interpersonal involvement with dying family members might begin to consider their own end‐of‐life care. This study examined the associations between experiences of being with a dying family member and advance care planning discussions among Japanese older adults. Methods: This study examined data from a previous self‐administered questionnaire survey carried out among outpatients aged ≥65 years. All participants were visitors of a community hospital in Japan, with data being collected over a 1‐week period in July 2016. The main exposure was experiences of being with dying family members, while the outcome was advance care planning discussions with the family members and/or their physician. We analyzed the associations between experiences of being with dying family members and advance care planning discussions through log‐binomial regression models adjusted for possible sociodemographic confounders. Results: Of the 302 respondents included for analysis, 96 (32%) had experiences of being with dying family members, while 179 (59%) held advance care planning discussions. Respondents with said experiences were more likely to have discussions than those without experiences (fully adjusted prevalence ratio 1.31, 95% confidence interval 1.04–1.65). Subgroup analyses showed no significant interaction effects between experiences of being with dying family members and the covariates. Conclusions: Direct interpersonal involvement with dying family members might facilitate advance care planning discussions among Japanese older adults. Our results should help healthcare providers recognize individuals who are unlikely to have discussions. 

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Assisted Living Transitions: Experiences of Family Members of Older African American Women

Background: Long-term care, also known as aging services, is evolving to meet the needs of the aging population in the United States, which is increasingly ethnically and racially diverse. The objective of this qualitative multiple case study was to understand how immediate family members experienced the transition of older African American women as they moved into assisted living facilities. Design: Black feminist theory provided a theoretical framework. Narrative interview data were collected from four adult children family caregivers who facilitated the move. Results: Three themes emerged from the content analysis: (a) Transition is not planned in advance and does not happen until a critical event or incident occurs that changes the older adult’s physical, social, or emotional status; (b) The transition was more difficult than had been thought for the older women and their families; and (c) Older adults expect that family members stay connected and involved after the transition, and family members may have similar expectations. Human services professionals may use the results to provide better-informed programs and services for older African American women and their family member caregivers. Conclusion: Social change implications suggest developing a transition model to improve assessment and evaluation processes, promote cultural competence initiatives, and promote a person-centered approach to the transition process in order to begin to identify a framework that might be useful for human services practitioners.

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Aging and dependence in Brazil: sociodemographic and care characteristics of older adults and caregivers

Aims: This paper aims to identify sociodemographic and care characteristics of dependent older adults, formal and family caregivers in municipalities from different Brazilian regions. Methods: A cross-sectional study was carried out with a sample of 175 people, of whom 64 were older adults, 27 formal caregivers, and 84 family caregivers. Semi-structured interviews were conducted with specific questions for each group on the theme of care and dependence. Most older adults were female, aged 80 years or older, with low education and have been dependent for four years or more. Findings: Older adults reported feelings of loneliness, pointed out difficulties in medical care, and 29% had only access to Primary Health Care actions. Inequalities, burden, illnesses, and social problems were found among family caregivers. Black females with no formal employment, little or no training for the function, and low remuneration predominated among formal caregivers, and care was associated with domestic chores. Conclusion: We can conclude that gender and race inequalities persist in the care of dependent older adults, and we observed that the rigid social roles assigned to men and women in Brazil persist in the family and work dynamics in caring for the dependent older adults.  

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Actor and partner effects of self-rated health on life satisfaction among family caregiver couples

Objectives: This study examined the dyadic effects of self-rated health on the life satisfaction of family caregivers. The effects of the use of long-term care services were also explored to investigate whether support through care services is associated with the life satisfaction of family caregivers. Methods: The data were drawn from the sixth wave (2016) of the Korean Longitudinal Study of Aging. Caregivers who used long-term care services for older family members, and spouses of the caregivers, were identified. A total of 81 married caregiver couples were analyzed using the actor-partner interdependence model. Results: The study showed that better self-rated health of caregivers was associated with higher levels of life satisfaction (B = 8.87, p < 0.001). Better self-rated health of the caregivers was also associated with higher life satisfaction of their spouses (B = 6.01, p < 0.05). In addition, the results suggested that the use of long-term care services for patients was associated with the life satisfaction of both caregivers (B = 14.57, p < 0.01) and their spouses (B = 12.51, p < 0.05). Discussion: Our findings suggested mutual influences among family caregivers on their life satisfaction. In addition, long-term care services for patients may improve the life satisfaction of other family members. More support through long-term care services for people with care needs is required to increase the life satisfaction of family caregivers. The diverse relationships among family caregivers should be taken into consideration when developing policies and interventions.

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Using an Electronic App to Promote Home-Based Self-Care in Older Patients With Heart Failure: Qualitative Study on Patient and Informal Caregiver Challenges

Background: Heart failure (HF) affects many older individuals in North America, with recurrent hospitalizations despite postdischarge strategies to prevent readmission. Proper HF self-care can potentially lead to better clinical outcomes, yet many older patients find self-care challenging. Mobile health (mHealth) apps can provide support to patients with respect to HF self-care. However, many mHealth apps are not designed to consider potential patient barriers, such as literacy, numeracy, and cognitive impairment, leading to challenges for older patients. We previously demonstrated that a paper-based standardized diuretic decision support tool (SDDST) with daily weights and adjustment of diuretic dose led to improved self-care.; Objective: The aim of this study is to better understand the self-care challenges that older patients with HF and their informal care providers (CPs) face on a daily basis, leading to the conversion of the SDDST into a user-centered mHealth app.; Methods: We recruited 14 patients (male: 8/14, 57%) with a confirmed diagnosis of HF, aged ≥60 years, and 7 CPs from the HF clinic and the cardiology ward at the Hamilton General Hospital. Patients were categorized into 3 groups based on the self-care heart failure index: patients with adequate self-care, patients with inadequate self-care without a CP, or patients with inadequate self-care with a CP. We conducted semistructured interviews with patients and their CPs using persona-scenarios. Interviews were transcribed verbatim and analyzed for emerging themes using an inductive approach.; Results: Six themes were identified: usability of technology, communication, app customization, complexity of self-care, usefulness of HF-related information, and long-term use and cost. Many of the challenges patients and CPs reported involved their unfamiliarity with technology and the lack of incentive for its use. However, participants were supportive and more likely to actively use the HF app when informed of the intervention's inclusion of volunteer and nurse assistance.; Conclusions: Patients with varying self-care adequacy levels were willing to use an mHealth app if it was simple in its functionality and user interface. To promote the adoption and usability of these tools, patients confirmed the need for researchers to engage with end users before developing an app. Findings from this study can be used to help inform the design of an mHealth app to ensure that it is adapted for the needs of older individuals with HF. 

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Training Needs Among Family Caregivers Assisting During Home Health, as Identified by Home Health Clinicians

Objectives: To estimate the proportion of family caregivers assisting older adults during Medicare home health who have an identified need for activity-specific training and identify characteristics associated with caregiver training needs. Design: Nationally representative retrospective cohort study. Setting and Participants: 1758 (weighted n = 8,477,990) Medicare beneficiaries who participated in the National Health and Aging Trends Study (NHATS) and received Medicare-funded home health care between 2011 and 2016. Measures: Older adult and caregiving network characteristics before home health (sociodemographic factors, caregiver assistance, older adult health and function) were drawn from NHATS; characteristics during home health (family caregiver training needs, older adult health and function) were drawn from home health patient assessments. Weighted proportions of family caregivers with an identified need for activity-specific training were estimated. Weighted, multivariable logistic regressions modeled associations between older adult/caregiving network characteristics and family caregivers' identified activityspecific training needs during home health. Results: More than 1 in 3 (35.7%) family caregivers assisting older adults during Medicare home health had an identified training need with at least 1 caregiving activity. Rates of need for training varied widely, from 8.6% among caregivers helping with advocacy to 48.2% among caregivers helping with medical procedures. In weighted analyses that adjusted for older adults' health and function, family caregivers were less likely to have identified training needs when assisting older adults with ongoing disability or who received caregiver assistance before home health admission. Conclusions and Implications: Findings highlight the pervasiveness of family caregivers' training needs, particularly with medically oriented activities, and indicate that escalations in older adults' care needs are linked to caregiver training needs. Therefore, transitions of care may present critical opportunities to connect family caregivers with training resources. 

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Timing of Immigration Effects Asset Change Among Hispanic Caregivers of Older Family Members

Given the cultural value of family in Hispanic culture, older Hispanic immigrants are likely to have family caregivers. This study examined the economic implications of caring for older Hispanic adults regarding non-housing financial wealth over time. Using the 2008, 2010, and 2012 waves of the Health and Retirement Study (HRS) and RAND HRS data files, this study compares changes in the non-housing financial wealth between 2008 and 2012 by caregiving and immigration status among Hispanics. This study examined differences in assets between Hispanic caregivers and non-caregivers and more specifically examined the subpopulation of Hispanic caregivers who immigrated prior to and after 1968 as compared to U.S.-born caregivers to better understand the effect of the Immigration and Nationality Amendment Act of 1965 on asset change. Results indicate that caregiving itself did not have a statistically significant association with wealth, but the timing of immigration to the US had a statistically significant correlation (p < .05) with changes in the financial wealth. The findings of this study have implications for policy and program development targeting older adults and caregiving for this population.

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Sustainable Care in a Familialist Regime: Coping with Elderly Care in Slovenia

In countries with prevalent family care and less developed care services, it is important to understand the ways families cope with the care needs of their frail family members as part of policy learning to make care systems more sustainable. Filial care is a vital element of family care, yet is significantly restrained by the involvement of carers in the labour market; unequal gender distribution of the care burden; and insufficient recognition of, and policy support, for family care. This article considered the issue of the sustainability of elderly care in a familialist country, Slovenia, by identifying the coping strategies families adopt for the provision of care. To this end, in-depth qualitative data based on a purposeful sample of 55 community-resident users of social home care services and their 55 family carers were used. We identified five external coping strategies: use of formal care services, use of extended family network, use of wider community network, cohabitation, and home adjustments. Among internal strategies, we detected work-related adjustments; abandoning leisure activities; abandoning vacations; establishing new routines; accepting and finding satisfaction in care; increased psychological distress, such as worries and overburdening; and some unmet care recipient needs. Very few strategies may be described as supported by policy actions, despite such support being essential for increasing the sustainability of the family-based care model.

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Stories from people living with frailty

We describe the findings of a qualitative longitudinal interview study of a group of initially community-dwelling frail older people, and their informal and formal carers. We used a narrative approach to explore the role that narrative may have for people living with frailty. This has been less explored comparative to the experiences of those living with chronic illness. The frail older people told stories of their experiences that revealed three distinct shapes or typologies. These were either stable, unbalancing or overwhelmed, and related to how the person managed to adapt to increasing challenges and losses, and to reintegrate their sense of self into a cohesive narrative. Each is illustrated by an individual case story. Frailty is described as both biographically anticipated yet potentially biographically disruptive as older people may struggle to make sense of their circumstances without a clear single causative factor. Findings are discussed in relation to biographical disruption and reconstruction in chronic illness and the rhetoric around 'successful ageing'. We conclude by drawing attention to the complex individual and social factors that contribute to the experience of living with frailty in later life.

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Sharing is caring: The potential of the sharing economy to support aging in place

This article explores innovative applications of sharing economy services that have the potential to support a population aging in place, especially the "oldest old," aged 85 and older, and their caregivers. A mixed-methods study conducted by the MIT AgeLab examined perceptions of and experiences with sharing economy services, ultimately finding opportunities and barriers to use. Thus, although sharing economy services have potential to support aging in place, to do so successfully will require reconstructing how older adults, family caregivers, aging service professionals, gerontology educators, and gerontology students conceptualize and deliver care to an aging population. We suggest examples for gerontology educators to integrate into their classrooms to further cultivate an appreciation among students of multiple approaches to intervention, including those that leverage sharing economy and technology-enabled platforms to support older adults and their caregivers. 

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Remote Monitoring Technologies in Dementia Care: An Interpretative Phenomenological Analysis of Family Caregivers' Experiences

The desire to maintain an independent lifestyle is one shared by an increasing number of older adults. Adult children, spouses, siblings, and other relatives, also known as family caregivers, play an integral role in helping their loved ones maintain independence. Remote monitoring technologies (RMTs) such as wearable sensors, mobile emergency devices, smartphone apps, and webcams can be used to monitor, sense, record, and communicate a person's daily activities. However, understanding is limited of the family caregiver's needs and perceptions of RMTs used in a home-based setting. The purpose was to explore how family caregivers perceive RMTs and their use for monitoring and supporting their care recipients who choose to live independently. We used a survey to capture some basic characteristics of family caregivers, what they know about RMTs, and to recruit interview participants. We conducted semi-structured interviews with four participants who shared the commonality of caring for a relative with dementia. We reported the survey data using descriptive statistics and we applied interpretative phenomenological analysis (IPA) to analyze and report results from the interviews. Four themes emerged including the unique relationships that exist in family care, the risk-benefit conundrum that accompanies benefits and tradeoffs of RMT use, human-technology interaction and usability, and the importance of creating tailored solutions to facilitate RMT adoption and use. Our findings provide insight into factors impacting adoption and use.

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The relationship between the burden on caregivers in caring for older people and their quality of life

Older people have decreased functions, which lead to increased dependence on others, especially their families. This dependence can impose a burden on the caregivers who help with the daily needs of older people, and any resulting inability to provide care has an impact on their quality of life. This study aims to identify relationship between the burden on caregivers in caring for older people and their quality of life. The research method is a cross-sectional design based on 135 respondents; the inclusion criteria for the study are families and the older people who live in the same house. The results of the statistical tests, there is a relationship between the burden on caregivers in caring for older people and the quality of life of the latter (p<0.05). The analysis also obtained the result OR=2.382 (95% CI=1.193; 4.757). Based on the results of the study, various efforts are needed to reduce the burden on caregivers, in order to increase their ability to care for older people and improve the quality of those in need. 

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Psychological Well-Being Among Informal Caregivers in the Canadian Longitudinal Study on Aging: Why the Location of Care Matters

Objectives A caregiving stress perspective suggests that caregiving harms psychological well-being in informal caregivers, whereas a caregiving rewards perspective suggests that provision of care benefits psychological well-being. This research examines whether both perspectives apply to caregiving experiences, but differently by the primary location of caregiving (i.e. in-home, other residence, and institution), as well as by gender. Methods We analyzed depression and life satisfaction in the nationally representative Canadian Longitudinal Study on Aging (N = 48,648), first comparing noncaregivers (N = 27,699) to a combined caregiver group (N = 20,949) and then stratifying caregivers by the primary location of care. Results When considered as a single group, caregivers suffered relative to noncaregivers in terms of life satisfaction and depression. When stratified by the location of care, only in-home caregivers reported both greater depression and lower life satisfaction. Nonresidential caregivers did not differ significantly in levels of depression from noncaregivers and reported higher life satisfaction. Institutional caregivers reported greater depression than noncaregivers, but did not differ significantly in life satisfaction. These patterns were stronger among women than men. Discussion Both the caregiving stress and caregiving rewards perspectives are applicable to the caregiving experience, with the stress perspective more applicable to in-home caregivers and the rewards perspective more relevant to nonresidential caregivers. Recommendations include targeted practice focused on the location of care as well as the gender of the caregiver. Given that nonresidential caregivers actually benefit from providing care, interventions need to focus on identifying and bolstering positive aspects of the caregiving experience.

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Prevalence of Informal Caregiving in States Participating in the US Patient Protection and Affordable Care Act Balancing Incentive Program, 2011-2018

Importance: The Balancing Incentives Program (BIP), established under the 2010 Patient Protection and Affordable Care Act provided federal funding for states to shift long-term care out of institutional settings and into the home. However, the association of its implementation with informal caregiving is not known.; Objective: To evaluate the association between BIP participation and the prevalence and frequency of informal caregiving and socioeconomic disparities among caregivers.; Design, Setting, and Participants: The cohort study included respondents to the 2011-2018 American Time Use Survey in BIP-adopting states and non-BIP-adopting states.; Exposure: Living in a state that had implemented the BIP after program implementation had begun (April 2012 to April 2018).; Main Outcomes and Measures: Prevalence of caregiving among all respondents, frequency of caregiving, and minutes of daily sleep, a marker of well-being. Differences-in-differences (DID) regression analysis was used to compare these outcomes between BIP-adopting states and non-BIP-adopting states.; Results: The study included 38 343 respondents in BIP-adopting states (median age, 47 years [interquartile range (IQR), 31-61 years]; 51.9% women), of whom 7428 were caregivers (median age, 51 years [IQR, 37-61 years]; 55.6% women), and 26 437 respondents in non-BIP-adopting states (median age, 48 years [IQR, 32-62 years]; 52.7% women), of whom 5527 were caregivers (median age, 52 years [IQR, 38-62 years]; 57.9% women). There was no change in the prevalence of caregiving between BIP-adopting and non-BIP-adopting states after program implementation (DID, 0.00%; 95% CI, -0.01% to 0.01%). Caregivers in BIP-adopting states were more likely to provide daily care after implementation (DID, 3.2%; 95% CI, 0.3%-6.0%; P = .03) and report increased time sleeping (DID, 15.6 minutes; 95% CI, 4.9-26.2 minutes; P = .005) compared with caregivers in non-BIP-adopting states. This association was more pronounced among caregivers with more education (DID, 25.1 minutes; 95% CI, 6.5-43.8 minutes; P = .01) and higher annual family income (DID, 16.9 minutes; 95% CI, 5.9-27.9 minutes; P = .004) compared with caregivers in non-BIP-adopting states who had the same education and income levels, respectively.; Conclusions and Relevance: In this cohort study, the BIP was associated with increased daily caregiving and improved caregiver well-being. However, it may have disproportionately benefited caregivers of higher socioeconomic status, potentially exacerbating disparities in caregiver stress. Future policies should aim to mitigate this unintended consequence.

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Post-discharge medicines management: the experiences, perceptions and roles of older people and their family carers

Background Multiple changes are made to older patients' medicines during hospital admission, which can sometimes cause confusion and anxiety. This results in problems with post-discharge medicines management, for example medicines taken incorrectly, which can lead to harm, hospital readmission and reduced quality of life. Aim To explore the experiences of older patients and their family carers as they enacted post-discharge medicines management. Design Semi-structured interviews took place in participants' homes, approximately two weeks after hospital discharge. Data analysis used the Framework method. Setting and participants Recruitment took place during admission to one of two large teaching hospitals in North England. Twenty-seven participants aged 75 plus who lived with long-term conditions and polypharmacy, and nine family carers, were interviewed. Findings Three core themes emerged: impact of the transition, safety strategies and medicines management role. Conversations between participants and health-care professionals about medicines changes often lacked detail, which disrupted some participants' knowledge and medicines management capabilities. Participants used multiple strategies to support post-discharge medicines management, such as creating administration checklists, seeking advice or supporting primary care through prompts to ensure medicines were supplied on time. The level to which they engaged with these activities varied. Discussion and conclusion Participants experienced gaps in their post-discharge medicines management, which they had to bridge through implementing their own strategies or by enlisting support from others. Areas for improvement were identified, mainly through better communication about medicines changes and wider involvement of patients and family carers in their medicines-related care during the hospital-to-home transition.

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Care, Dignity and Respect - The Aged Care Royal Commission Final Report

The Final Report of the Royal Commission into Aged Care Quality and Safety was tabled in Parliament on 1 March 2021. In their Report, titled Care, Dignity and Respect, Royal Commissioners Tony Pagone QC and Lynelle Briggs AO call for fundamental reform of the aged care system.  The report is issued in 5 volumes.

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Management of home care by family caregivers to elderly after hospital discharge

Objective: To understand the management of home care by family caregivers of dependent elderly people after hospital discharge.; Methods: Qualitative research guided by hermeneutics-dialectic, anchored in the theory of communicative action. Data collection took place using a semi-structured interview with 11 participants.; Results: Two categories were constructed: Management of the many types of care by the caregiver and the relationship between family caregiver and health care network. Care and management actions carried out routinely cause major changes in the family caregiver's life. He/she does not recognize planning, home care periodicity or support in required procedures.; Final Considerations: The management of home care for dependent elderly people after hospital discharge is complex, involving physical and emotional overloads, as well as difficulties in getting support from health services. The planning shared between the health team and the family since the discharge is required, and the better visibility of the role of primary care when the patient is assisted by a home care service.

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Caring as a social determinant of health: review of evidence

Unpaid carers provide critical support for people with health and social care needs. The majority of recipients of unpaid care are older parents or spouses and partners, and changes in the make-up of our population indicate that the number of dependent older people in the UK will increase by 113% by 2051.

Supporting those who provide unpaid care to older people is therefore hugely important, and evidence is needed on how best to do this. The support provided by carers is often physically and emotionally demanding, with consequences for carers’ own health and wellbeing.

In this work, PHE commissioned Newcastle University to:

  • explore the consequences of being an unpaid carer of older people
  • identify evidence about how best to support this group of carers

To address these aims, a rapid review of existing evidence reviews (an ‘umbrella review’) was conducted, alongside analysis of data on carers (for any population) from the NHS England GP Patient Survey. The main findings are:

  • mounting evidence that unpaid caring should be considered a social determinant of health
  • carers experience poor physical and mental health but also have unmet care needs themselves
  • different groups of carers may have different support needs
  • a lack of clear and robust evidence about how best to support people caring for older populations, and gaps in evidence on key outcomes

Tools

This report proposes a logic model as a tool for evaluating the impact of carer interventions.

It also includes ‘access enablers’ as important in ensuring that carers are connected with relevant services and interventions on offer. Social prescribing is one of these enablers.

Knowledge and Behaviors Toward Health Care for Elderly Patients with Hypertension, and Quality of Life Among Informal Caregivers in Northern Thailand

Background: Informal caregivers play an important role in caring for patients with chronic conditions. Little is known about the quality of life among caregivers of patients with chronic illnesses in Thailand. The purpose of this study was to investigate the relationships among knowledge and behaviors toward health care for elderly patients with hypertension, and the quality of life among informal caregivers. Methods: A total of 402 informal caregivers for their elderly co-habitants suffering from hypertension were randomly selected to participate in this cross-sectional study. Data collection was performed in rural areas of Phayao province, located in the northern part of Thailand. Self-administered questionnaires were employed, which covered knowledge and behaviors toward health care for elderly patients with hypertension, and the Thai version of the World Health Organization Quality of Life Brief Version (WHOQOL-BREF) questionnaire. Results: The scores of knowledge and behaviors toward health care for elderly patients with hypertension, and the quality of life were at low and fair levels. In the multivariable linear regression model, the results showed that four variables - age, caregiver's relationship to the patient, knowledge, and behaviors toward health care for elderly patients with hypertension - were significantly related to quality of life among caregivers (p < 0.05). Conclusion: Knowledge and behaviors toward health care for hypertensive patients influence the quality of life among informal caregivers. The caregivers in rural communities should be encouraged to become educated on the stages of hypertension, preparation for taking care of the elderly with high blood pressure, and effective behavioral care for patients, in order to improve the quality of life of both caregiver and patient. In addition, health care providers should have clear guidelines for development of the health care system to enhance the potential care and quality of life among informal caregivers.

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Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia?

Introduction Family carers are cornerstones in the care of older people living with dementia. Family carers report extensive carer burden, reduced health-related quality of life (HRQoL), and extensive time spent on informal care (Time). Health literacy (HL) is a concept associated with people's ability to access health services, and navigate the healthcare system. This study's aim was to investigate HL among family carers, and investigate the associations between HL and carer burden, HRQoL, and Time spent on informal care. Method We designed a self-administered survey comprising validated instruments, including the Health Literacy Scale (HLS-N-Q12) to measure HL, Relative Stress Scale (RSS) to measure carer burden, the EQ-5D-5L instrument to measure HRQoL, and some modified questions from the Resource Utilization in Dementia (RUD) questionnaire to measure time spent on informal care (Time). Descriptive analysis in addition to bivariate and multiple linear regressions were undertaken. In multiple linear regression analysis, we used HL as the independent variable to predict the outcomes (carer burden, HRQoL, Time). Analyses were adjusted for the effects of explanatory independent variables: age, gender, education levels, urban residency, having worked as health personnel, caring for someone with severe/mild dementia, and being born abroad. Findings In a non-probability sample of 188 family carers from across Norway, most of them female and over the age of 60, we found high levels of HL. In the bivariate analysis, carer burden and HRQoL (EQvalue) showed significant associations with HL. In the multiple regression analyses, HL was statistically significantly associated with carer burden (B = -0.18 CI:-0.33,-0.02 p = 0.02), HRQoL (EQvalue: B = 0.003 with 95% CI: 0.001, 0.006 p = 0.04), and Time (B = -0.03 with 95% CI: -0.06, 0.000, p = 0.046), after adjusting for the effect of independent variables. Conclusion This is one of the first studies to investigate the associations between HL and different outcomes for family carers of older people living with dementia. Additional research into the associations identified here is needed to further develop our understanding of how to support family carers in their roles. Targeted support that increases family carers' HL may have potential to enhance their ability to provide sustainable care over time.

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Investigating the psychometric properties of the Carers' Fall Concern instrument to measure carers' concern for older people at risk of falling at home: A cross‐sectional study

Aims: This study aimed to investigate the psychometric properties of the Carers' Fall Concern Instrument (CFC‐I) for measuring carers' concern for older people (care recipients) at risk of falling. Background: Family carers are crucial in preventing older people from falling at home. Their concerns for older people at risk of falling have severe implications on carers' psychological well‐being and ability to prevent falls. However, there is no validated instrument measuring this concern. Methods: A cross‐sectional study was used to examine the validity and reliability of the CFC‐I. Carers looking after older people living at home completed the 17‐item CFC‐I and provided information about their care arrangements and the older people's fall history. Construct validity was tested using exploratory factor analysis and hypothesis testing. Internal consistency was determined by calculating Cronbach's alpha coefficient. Results: 143 carers completed the survey either by face‐to‐face or by online. After deleting one item with an item‐total correlation of below 0.3, the remaining 16‐item CFC‐I reported a Cronbach alpha of 0.93. Construct validity was supported by strong item‐total correlations (0.51–0.76), mean inter‐item correlations (0.47) and factor loadings (0.557–0.809). Factor analysis revealed three factors that include concerns about care recipients' health and function, living environment and carers' perception of fall and fall risk. The 16‐item CFC‐I can discriminate between carers of older people with and without recurrent (fallen 3/ more times) falls. Conclusion: The 16‐item CFC‐I is a valid and reliable scale for measuring carers' concern for the older people's risk of falling. Future analysis of test–retest and inter‐rater reliability of the instrument will further support its clinical use for carers. Implications for practice: The newly developed multi‐item CFC‐I can be used to quantify the carers' level of fall concern and inform targeted interventions for carers when caring for older people who are at risk of falling.

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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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Informal Caregiving, Poor Mental Health, and Subjective Cognitive Decline: Results From a Population-Based Sample

The current study examined potential gender differences in the associations between informal caregiving, poor mental health, and subjective cognitive decline (SCD). Data were obtained from the U.S. Behavioral Risk Factor Surveillance System (N = 16,042; 9,410 women, 6,632 men). Multivariate linear and logistic regression models were used to obtain adjusted beta s and odds ratios (ORs), and 95% confidence intervals (CIs) depicting the association between informal caregiving, poor mental health, and SCD overall and by gender. Caregiving was positively associated with poor mental health among men (adjusted beta = 2.60; 95% CI [2.59, 2.62]) and women (adjusted beta = 0.40; 95% CI [0.23, 0.57]). Poor mental health was positively associated with SCD among men (adjusted OR = 1.05; 95% CI [1.02, 1.08]) and women (adjusted OR = 1.07; 95% CI [1.04, 1.10]). Poor mental health may be associated with SCD, irrespective of gender, and additional studies are needed that will identify key variables influencing SCD among male and female informal caregivers.

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Family caregiver's burden and the social support for older patients undergoing peritoneal dialysis

SUMMARY: Background: Most elderly people undergoing peritoneal dialysis (PD) treatment have a high incidence of frailty, cognitive impairment and emotional disturbance leading to a significant impact on families. The burden experienced by the family caregivers could affect their physical and emotion health. The objective of this study was to examine the level of burden on family caregivers of elderly adults receiving PD and to identify any contributing factors. Materials and Methods: This was a cross‐sectional study employing convenience sampling. Patient–caregiver dyads were recruited from the outpatient clinic of a university hospital in China in 2019. Caregivers provided information on their perceived burden and health‐related quality of life. The elderly patients reported their functional dependence and depressive symptoms in the same interview. Linear regression analyses were used to determine the factors contributing to caregivers' burden. Results: Sixty patient–caregiver dyads were recruited. The patients had a mean age of 70.7 ± 7.4 years. The caregivers reported moderate levels of burden having ZBI score of 30.5 ± 15.9. Multivariate analyses showed that being female, perceiving one's financial status as insufficient, a low level of social support for the caregiver, depressive symptoms in the patients and disability in carrying out the instrumental activities of daily life were statistically significant predictors of caregiver burden (adjusted R2 = 0.46, p < 0.001). Conclusion: Elderly adults receiving PD who experience physical dependence and depressive symptoms are a burden for caregivers. In response to this challenge, interventions designed with the goal of supporting the emotional and mental wellbeing of caregivers are warranted.

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Families' Experiences of End-of-Life Care at Home for Iranian Older Adults: A Qualitative Study

Aim: While the care of dying elderly patients at home is very complex and ambiguous, it has not been studied in Iran so far. Hence, this study aimed to explore the experience of a representative sample of the Iranian family caregivers from the end-of-life (EOL) care for their elderly relatives. Methods: The present study was conducted using a qualitative content analysis method. Twelve family caregivers caring for the chronically ill dying elderly were selected using purposeful sampling. The purposive sampling method was applied with an extreme variation in sampling, and data gathering was pursued until data saturation was achieved. Semi-structured interviews were utilized for data collection. Interviews were recorded and instantly transcribed verbatim. Inductive content analysis was used to analyze the data. Results: Four core themes and 13 subthemes emerged from the experiences of family's caregiver as fallow: (1) Committed to care: This is related to encounter with the end of stage disease of the relative, accepting the care role and priority of care, (2) challenges of Care: Caregivers, despite their efforts, provided ineffective care, so they sought to empower themselves and at the same time provide compassionate care, (3) the crisis of care including the complexity of care, fear, and wandering, helplessness, devastating tension, and vacuum of supporting, and (4) conditions after death that family members involved with a sense of loss and Tension control. Conclusion: When families had to take care of their elderly patients at home, although their wish to give the best care, they are completely powerless to provide care, and in an atmosphere of the vacuum of supporting, they encounter severe challenges and crisis. It is vital that palliative care centers in the society are arranged to care for EOL elderly with comprehensive insurance services.

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Exploring perceptions toward home-care robots for older people in Finland, Ireland, and Japan: A comparative questionnaire study

Purpose: To clarify potential users' perceptions toward the development and social implementation of home-care robots in Japan, Ireland, and Finland. Methods: Unsigned, self-administered questionnaires were distributed to adults aged 65 or older, family caregivers, and home-care/health and social care professionals (HSCPs). A total of 1004 responses were collected. Results: In Japan, many people were already familiar with robots in their daily lives. The most notable finding about their perspectives on home-care robots was related to safety. Moreover, 93.7 % of the Japanese respondents said, "If the user cannot decide whether to use a home-care robot, family members who know the user well should decide," followed by 76.4 % in Ireland and 83.1 % in Finland (p < .001). In Ireland, 81.8 % of the respondents said, "I want to help other people and society by participating in the research and development of home-care robots" (Japan: 69.9 %; Finland: 67.5 %) (p = .006). In Finland, many people had a negative impression of robots compared to the other two countries. Finland had the highest percentage (75.4 %) of respondents who said, "Health care professionals should be allowed to use secondary information collected by a home-care robot" (Japan and Ireland: 64 %) (p = .024). Moreover, Ireland and Finland emphasized the need to guarantee the entitlement to receive human care. Conclusions: Devising optimal strategies for the development and social implementation of home-care robots by incorporating various perspectives while valuing human dignity will require examination of each country's characteristics with respect to history, culture, policies, and values related to robots.

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The essential needs for home-care robots in Japan

Purpose This study aims to compare the level of needs for home-care robots amongst older adults, family caregivers and home-care staff and clarify the factors constituting these needs. Design/methodology/approach A cross-sectional, anonymous questionnaire survey was administered. It included 52 items related to needs for home-care robots rated on a four-point Likert scale. Means and standard deviations were calculated, and the Kruskal-Wallis test was performed for each item. Factor analysis was conducted on the needs of home-care staff. Findings Responses from 79 older adults, 54 family caregivers and 427 home-care staff were analysed. For all three groups, the level of agreement was high for the following needs: to inform family and support personnel immediately when older adults fall, about their location in case of natural disasters and about mismanagement of fire by older adults with dementia. For family caregivers and home-care staff, the level of need concerning monitoring was higher than for older adults. Extracted using factor analysis, the six factors representing the essential needs for home-care robots were risk minimisation, daily monitoring of the physical condition, supporting activities of daily living (ADL) and instrumental ADL, pre-empting problems, communication and miscellaneous support. Originality/value The results showed that the education of caregivers and the co-design process of robot development should involve home-care staff, older adults and family caregivers, which are important for making decisions about the use of home-care robots for older adults.

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Elder Abuse Assessment Tools and Interventions for use in the Home Environment: a Scoping Review

Background and Aim: Caregivers in the home environment have an important role in timely detecting and responding to abuse. The aim of this review was to provide insight into both the existing tools for the assessment of and interventions for elder abuse by formal and informal caregivers in the home environment, and to categorize them according to a public health perspective, into primary, secondary, tertiary or quaternary prevention. Methods: We selected the assessment tools and interventions that can be used by caregivers in the home environment included in previous reviews by Gallione et al (2017) and Fearing et al (2017). To identify published studies after these reviews, a search was performed using PubMed, Cochrane Database, CINAHL and Web of Science. Results: In total, fifteen assessment tools and twelve interventions were included. The number of assessment tools for elder abuse for use in the home environment is increasing; however, tools must be validated over different cultures and risk groups. In addition, the tools lack attention for the needs of vulnerable older persons such as persons with dementia. Existing interventions for caregivers in the home environment lack evidence for addressing elder abuse and do not address potential adverse effects (quaternary prevention). Conclusion: Assessment tools for elder abuse need further testing for validity and reliability for use by caregivers in the home environment. For interventions, meaningful outcome measures are needed. Important to note is that quaternary prevention requires more attention. This argues for taking into account perspectives of (abused) older persons and caregivers in the development of assessment tools and interventions protocols.

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Division of Parent Care Among Adult Children

Objectives Many older adults rely on their children's support to sustain community residence. Although filial norms encourage adult children to help their parents, not every child provides parent care in times of need. The majority of prior studies have adopted an individualistic perspective to examine factors associated with individual children's caregiving behavior. This study complements previous work by using the family systems perspective to understand how caregiving responsibilities are allocated among children in the family and how the pattern of care division evolves over time. Method Data came from seven rounds of the National Health and Aging Trends Study (2011–2017), in which community-dwelling respondents were asked about all of their children and which children provided them with care. Multilevel models were estimated to examine how caregiving responsibilities were distributed among children and how the children's caregiving efforts responded to changes in their parents' frailty. Results About three quarters of older adults reported receiving help from only one child, and the average of monthly care hours was about 50 at baseline. As parents' frailty increased, the proportion of children providing parents rose and the allocation of parent-care hours became more equal. Discussion This study underscores the importance of using the family systems perspective to better understand adult children's caregiving behavior. Although just one adult child providing care is the most common caregiving arrangement initially, adult children tend to work with their siblings to support parents' aging in place as parents' need for care increases.

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Disability Severity and Home-Based Care Quality in Older Adults: The Mediating Effects of Social Support and Caregiver Competence

Background The lack of adequate medical care, healthcare, and older adult care in remote, low-income, rural Kazakh areas of China is a particular concern that should be prioritized for improvement. Purpose This study was designed to explore the relationship between the variables of disability severity, social support, and caregiver competence and the quality of home-based care in a population of Kazakh older adults with disabilities and to analyze the path between severity of disability and quality of home-based care in this population. Methods A cross-sectional survey was conducted on 335 Kazakh older adults with disabilities living in Xinjiang, China, and their primary informal caregivers. Disability severity was assessed using the Activities of Daily Living Scale, caregiver competence was assessed using the Family Caregiver Task Inventory, social support was assessed using the Social Support Rating Scale, and home-based care quality was assessed using the Family Caregiving Consequences Inventory Scale. Path analysis was used to check the effects of other variables on the quality of home-based care. Results Significant correlations were found among disability severity, caregiver competence, social support, and home-based care quality. Disability severity was shown to have a 29.28% direct effect on home-based care quality and a 70.72% indirect effect through social support and caregiver competence. Conclusions The results of this study confirm that better social support and caregiver competence improves the quality of home-based care available to older adults with disabilities. Policymakers should give priority to improving the quality of care provided to community-dwelling older adults with severe disabilities. Furthermore, health management departments should provide informal caregiver training that teaches care and rehabilitation knowledge and skills to improve the competencies of caregivers.

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Conflicts Experienced by Caregivers of Older Adults With the Health-Care System

Background: Family caregivers of older adults frequently navigate the health system for their loved ones. As older adults experience more medical issues, the interactions between caregivers and the health system can be fraught with conflicts. Objective: To characterize the conflicts that caregivers of older adults experience with the health-care system. Methods: A cross-sectional national online survey with open-ended questions was conducted among family caregivers ascertaining experiences with the health-care system. Qualitative thematic analysis was completed using constant comparative analysis and review by a third author. Results: Over a 2-month period, 97 caregivers completed the survey. Common themes where caregivers experienced conflicts were Difficulty With Accessing/Communicating With Providers, Delivery of Emergency Care, Disjointed Transitional Care, Unaddressed Clinical Concerns, and Financial. Caregivers reported needing to act as patient advocates in the conflicts with the health-care system. Conclusion: Understanding the conflicts that family caregivers encounter with the health system provides potential targets for future interventions to combat the challenges faced by caregivers of older adults and ultimately improve delivery of geriatric care.

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Co-Design to Support the Development of Inclusive eHealth Tools for Caregivers of Functionally Dependent Older Persons: Social Justice Design

Background: eHealth can help reduce social health inequalities (SHIs) as much as it can exacerbate them. Taking a co-design approach to the development of eHealth tools has the potential to ensure that these tools are inclusive. Although the importance of involving future users in the development of eHealth tools to reduce SHIs is highlighted in the scientific literature, the challenges associated with their participation question the benefits of this involvement as co-designers in a real-world context. Objective: On the basis of Amartya Sen's theoretical framework of social justice, the aim of this study is to explore how co-design can support the development of an inclusive eHealth tool for caregivers of functionally dependent older persons. Methods: This study is based on a social justice design and participant observation as part of a large-scale research project funded by the Ministry of Families as part of the Age-Friendly Quebec Program (Quebec Ami des Aines). The analysis was based on the method developed by Miles and Huberman and on Paille's analytical questioning method. Results: A total of 78 people participated in 11 co-design sessions in 11 Quebec regions. A total of 24 preparatory meetings and 11 debriefing sessions were required to complete this process. Co-designers participated in the creation of a prototype to support the search for formal services for caregivers. The majority of participants (except for 2) significantly contributed to the tool's designing. They also incorporated conversion factors to ensure the inclusiveness of the eHealth tool, such as an adequate level of digital literacy and respect for the caregiver's help-seeking process. In the course of the experiment, the research team's position regarding its role in co-design evolved from a neutral posture and promoting co-designer participation to one that was more pragmatic. Conclusions: The use of co-design involving participants at risk of SHIs does not guarantee innovation, but it does guarantee that the tool developed will comply with their process of help-seeking and their literacy level. Time issues interfere with efforts to carry out a democratic process in its ideal form. It would be useful to single out some key issues to guide researchers on what should be addressed in co-design discussions and what can be left out to make optimal use of this approach in a real-world context.

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Caring for older persons in rural and urban communities: perspectives of Ghanaian informal caregivers on their coping mechanisms

Objective Studies on informal caregiving for older persons in Ghana have only reported the challenges of the caregivers without providing their coping mechanisms. Considering the myriad of challenges facing informal caregivers in Ghana, we sought to explore the coping mechanisms utilised by informal caregivers in rural and urban settings of Ghana to overcome their caregiving challenges. Methods In-depth interviews were conducted with 20 purposively selected caregivers from the Ejisu-Juaben Municipality and Kumasi Metropolis in the Ashanti Region of Ghana. The data were thematically analysed and common themes were reported as findings. Results Six key coping mechanisms were found; faith in God, support from friends and family, borrowing from friends, acceptance and encouragement, reducing expenditure on other activities, and taking time off. Conclusion The findings provide key strategies to policy-makers in the health sector to prevent the burnout of informal caregivers. Considerations from the coping mechanisms enumerated in the current study could guide the design and implementation of policies towards improving the informal healthcare sector in Ghana, which is crucial to the realisation of the United Nations' health-related Sustainable Development Goals.

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Caring for Older Adults With Vision Impairment and Dementia

Background and Objectives: Dementia and vision impairment (VI) are common among older adults but little is known about caregiving in this context. Research Design and Methods: We used data from the 2011 National Health and Aging Trends Study, a nationally representative survey of Medicare beneficiaries, linked to their family/unpaid helpers from the National Study of Caregiving. Vision impairment was defined as self-reported blindness or difficulty with distance/near vision. Probable dementia was based on survey report, interviews, and cognitive tests. Our outcomes included hours of care provided, and number of valued activities (scored 0-4) affected by caregiving, per month. Results: Among 1,776 caregivers, 898 (55.1%, weighted) assisted older adults without dementia or VI, 450 (21.9%) with dementia only, 224 (13.0%) with VI only, and 204 (10.0%) with dementia and VI. In fully adjusted negative binomial regression analyses, caregivers of individuals with dementia and VI spent 1.7 times as many hours (95% confidence interval [CI] = 1.4-2.2) providing care than caregivers of those without either impairment; however, caregivers of individuals with dementia only (95% CI = 1.1-1.6) and VI only (95% CI = 1.1-1.6) spent 1.3 times more hours. Additionally, caregivers of individuals with dementia and VI had 3.2 times as many valued activities affected (95% CI = 2.2-4.6), while caregivers of dementia only and VI only reported 1.9 times (95% CI = 1.4-2.6) and 1.3 times (95% CI = 0.9-1.8) more activities affected, respectively. Discussion and Implications: Our results suggest that caring for older adults with VI involves similar time demands as caring for older adults with dementia, but that participation impacts are greater when caring for older adults with both dementia and VI. Translational Significance: When compared with caring for older adults with either dementia or vision impairment, caring for older adults with both dementia and vision impairment involves more hours of caregiving per month and further limits caregivers' ability to participate in social activities. Low-vision rehabilitation and integration of low-vision services into the care of older adults with dementia and vision impairment may reduce caregiver burden.

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Application of treatment fidelity in tailored caregiver interventions

Demonstrations of the effectiveness of interventions requires evidence that the model can be implemented with fidelity. Caregiving interventions that are tailored to the individual or family require flexibility, which adds some challenges to the assessment of fidelity. This paper outlines the components necessary for examining treatment fidelity and common barriers to implementing fidelity studies, offers considerations for designing fidelity studies with tailored caregiver interventions, and aims to provide a set of procedures that can be used to guide future fidelity studies. Case study methods are used to illustrate the processes and findings, drawing on two research studies of fidelity in tailored caregiver interventions. Fidelity studies consist of core components (i.e. training on intervention delivery, adherence to the intervention, therapist competence, acceptability and outcomes) that should be maintained and monitored throughout the study to elucidate the relationship between the intervention and outcomes. These components are applicable to tailored caregiver interventions and can be implemented with the consideration of some key issues that are addressed prior to the evaluation. The two cases presented utilized similar methods to evaluate fidelity of two different tailored caregiver interventions. Treatment fidelity can be assessed for tailored caregiving interventions, which increases confidence about the potency of the active ingredients in the interventions. Standard fidelity guidelines can be implemented with minor additional considerations.

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Ambient assisted living technology-mediated interventions for older people and their informal carers in the context of healthy ageing: A scoping review

Background and Aims: There is a growing demand for health and social care services to provide technology-mediated interventions that promote the health and well-being of older people with health or care needs and of their informal carers. The objectives of this study were to scope and review the nature and extent of prior intervention studies involving ambient assisted living technology-mediated interventions for older people and their informal carers, and how and in what ways (if any) the goals and aims of these interventions reflected the domains of the World Health Organization framework for healthy ageing.; Methods: We conducted a scoping review. Data were collected between June and October 2018 with an updated search in October 2020. A total of 85 articles were eligible for inclusion.; Results: Nine categories described the aims and content of the included studies. The healthy ageing domain "Ability to meet basic needs" was mirrored in four categories, whereas "Ability to contribute to society" was not addressed at all.; Conclusion: The ways in which domains of healthy ageing are mirrored suggest that there is an emphasis on individual factors and individual responsibility, and a lack of attention given to broader, environmental factors affecting healthy ageing. Only a few of the studies used a dyadic approach when assessing health outcomes concerning older people and their informal carers. 

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The importance of family members caregiving for older adults during COVID-19

Presents an argument that one of the ways that we can more properly value family caregivers is by understanding that employment policies have implications for families’ and older adults’ well-being, and that policies targeted at families of all forms can affect the health, employment, and general well-being of the nation.

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Why Older Adults and Their Children Disagree About In-Home Surveillance Technology, Sensors, and Tracking

Background and Objectives Despite the surveilling nature of technologies that allow caregivers to remotely monitor location, movements, or activities, the potential differences in comfort with remote monitoring between caregivers and care recipients have not been examined in depth. On the dyad and aggregate level, we compare preferences of older adult women and their adult children for three remote monitoring technologies. Their assessments of each technology's impact on privacy, safety, independence, freedom, relationship with family member, social life, and identity are also compared. Research Design and Methods This dyadic study used cognitive-based interview probing and value-centered design methods. Twenty-eight individual, in-depth, structured interviews were conducted with 18 women who are Meals on Wheels clients and 10 of their adult children. Results Meals on Wheels participants reported multiple chronic conditions and an average of 1.7 ADL and 3.3 IADL difficulties; two thirds were enrolled in Medicaid. Adult children preferred each technology more than their mothers did and underestimated both their mothers' ability to comprehend the functions of the technologies and the importance of engaging them fully in decision making. Most were confident that they could persuade their mothers to adopt. For both groups, privacy was the most-cited concern, and participants perceived significant overlap between values of privacy, independence, identity, and freedom. Discussion and Implications Studying privacy in isolation overlooks privacy's instrumental role in enabling other values. Shared decision-making tools are needed to promote remote monitoring use consistent with older adults' values and to prevent conflict and caregiver overreach.

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Who Cares? An Existential Perspective of Caregiving for Individuals With a Left Ventricular Assist Device

The goal of a LVAD is to extend life expectancy, improve physical strength and quality of life, and allow individuals to be discharged home. When making decisions for a family member to receive a LVAD, caregivers are asked to confront a sophisticated technology with not only the potential to extend life expectancy and improve quality of life but also risks for complications and burdens. The caregiver may place different values on the quality of life (e.g., symptoms, physical function, social interactions) and burdens of therapy (e.g., lifestyle adjustment, independency, direct and indirect costs, caregiver burden) than the values of The Other. 

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Weiqu, structural injustice and caring for sick older people in rural Chinese families: An empirical ethical study

This paper examines caregiving for sick older family members in the context of socio‐economic transformations in rural China, combining empirical investigation with normative inquiry. The empirical part of this paper is based on a case study, taken from fieldwork in a rural Chinese hospital, of a son who took care of his hospitalized mother. This empirical study highlighted family members' weiqu (sense of unfairness)—a mental status from experiencing mistreatment and oppression in family care, yet with constrained power to explicitly protest or make care‐related choices. Underpinning people's weiqu and constrained choice, as informed by the conception of structural injustice, is the impact of unjust social structures, organized by unfavourable norms, discriminatory social policies and institutions targeting rural populations. By restraining individual choices and capacities in supporting health care for aging populations, these unjust structures create additional difficulties for and discriminations against rural families and their older members. Some policy recommendations are proposed to mitigate structural injustice so as to empower families and promote care for older people in rural settings.

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Validation of a Comprehensive Measure of the Family Caregiver Experience: The Caregiver Reaction Scale

Objectives: The Caregiver Reaction Scale (CRS) is a multi-dimensional measure of the family caregiving experience that assesses role conflict, challenges, and positive aspects of caregiving. The CRS has been validated in a sample of older adult caregivers who sought counseling, but its validity and reliability in a broader population of caregivers had not been established. This study aimed to explore how well the CRS assesses the multiple dimensions of the caregiving experience in a sample of family caregivers who match the national profile of caregivers and to confirm the validity and structure of the subscales.; Methods: Family caregivers ( N = 452), age 18-89 ( M   = 48.56, SD  = 17.15) were recruited online and completed the CRS and questionnaires of burden and positive aspects of caregiving. A confirmatory factor analysis (CFA) was conducted to confirm the underlying factor structure of the CRS, and convergent and discriminant validity was examined.; Results: CFA supported the existing structure of the CRS; all subscales demonstrated very good internal consistency reliability (α ≤.88), convergent validity ( r ≥.39), and discriminant validity ( r ≤.12).; Conclusions: The CRS offers a valid and reliable assessment of the caregiving experience as evidenced by the convergent and discriminant validity of CRS subscales with well-validated measures of burden and positive aspects of caregiving.; Clinical Implications: The CRS assesses multiple dimensions of caregiving that can be used to better understand the caregiver's experience, guide clinical interventions and referrals, and identify caregiver strengths.

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Unmet needs of informal carers of the oldest old in Portugal

Oldest‐old individuals are a growing segment of the population that faces several challenges in terms of care demands. Informal caregivers experience more or less challenges, namely depending on the support they can access. The present study explores the unmet needs of a sample of informal caregivers of community‐dwelling older adults aged 80+ and analyses the association of such needs with sociodemographic information, care‐giving context (e.g., length of care),and health characteristics of the caregivers and care receivers (e.g., cognitive status and functionality). We recruited 175 care‐giving dyads from the North of Portugal. Descriptive statistics summarised the sample's characteristics. Informal caregivers were mainly women with a mean age of 60.6 years (SD = 9.8). Care receivers' mean age was 88.7 years (SD = 5.6) and were functionally dependent (9.3 points [SD = 7.0] and 27.0 points [SD = 3.5] for Basic and Instrumental Activities of Daily Living, respectively). A thematic analysis of an open‐ended question on unmet needs was performed, revealing the presence of unmet needs. The most relevant ones (financial support, caregiver support, primary care/medical specialities, and labour regulation) were further analysed, concerning the care‐giving dyad's using Independent Student's t test or Mann–Whitney U Tests, and Chi‐squared test or Fisher's Exact test depending on the variable. The most frequent unmet needs were associated with the caregiver's age, care receivers' kinship, number of care‐giving hours, the caregiver's gender, professional status, the caregiver strain and medicines intake. Findings suggest the need for establishing policies that ensure adequate sustainability of the provision of informal care that takes into account the needs of care‐giving dyads in the planning process.

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Transitional palliative care interventions for older adults with advanced non-malignant diseases and frailty: a systematic review: Managing Community Care

Purpose To identify transitional palliative care (TPC) interventions for older adults with non-malignant chronic diseases and complex conditions. Design/methodology/approach A systematic review of the literature was conducted. CINAHL, Cochrane Library, Embase and Pubmed databases were searched for studies reporting TPC interventions for older adults, published between 2002 and 2019. The Crowe Critical Appraisal Tool was used for quality appraisal. Findings A total of six studies were included. Outcomes related to TPC interventions were grouped into three categories: healthcare system-related outcomes (rehospitalisation, length of stay [LOS] and emergency department [ED] visits), patient-related outcomes and family/carer important outcomes. Overall, TPC interventions were associated with lower readmission rates and LOS, improved quality of life and better decision-making concerning hospice care among families. Outcomes for ED visits were unclear. Research limitations/implications Positive outcomes related to healthcare services (including readmissions and LOS), patients (quality of life) and families (decision-making) were reported. However, the number of studies supporting the evidence were limited. Originality/value Studies examining the effectiveness of existing care models to support transitions for those in need of palliative care are limited. This systematic literature review identified and appraised interventions aimed at improving transitions to palliative care in older adults with advanced non-malignant diseases or frailty.

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Time for care: exploring time use by carers of older people

The paper focuses on temporal aspects of informal caring for older people. Limitations of large-scale surveys in capturing such data are noted and time-use methodology, despite its own limitations, is proposed as a promising alternative. Adopting a critical perspective on time that includes carers' own conceptualisations, we report the findings of a qualitative study of carers' time use. Sixty-two interviews with carers, male/female, co-resident/not co-resident, employed/not employed, and located across Great Britain were conducted. Analysis considered people's own diverse and ambiguous views of their care activities. Carers' accounts of their time revealed non-linear experiences and a sense of being permanently on call. Interviewees often travelled distances to engage in support activities with or for older people. Changes over time were pervasive, increasing or reducing care requirements. Unanticipated events could precipitate radical changes in time use. Managing time, exercising temporal agency, was particularly apparent in accounts of care, employment, other family responsibilities and choices about friendship. Measurement of carers' time use which draws on the conceptual foundation of carers' own perspectives on time may provide more effective quantitative understanding of the temporal aspects of caring. It should not pre-define time, must grasp a variety of tasks, take account of intermittent activity, incorporate the 24–7 experience of many carers and demonstrate how caring time interacts with other time. 

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Supporting In-Home Caregivers in Symptom Assessment of Frail Older Adults with Serious Illness: A Pilot Study (RP411)

Objectives Describe the use of a Symptom Assessment (SA) Toolkit designed to support in-home caregivers of homebound older adults with serious illness. Explore next steps in evaluation and dissemination of the Toolkit. Importance. Many older adults with serious illness who depend on others for care have symptoms that are difficult to manage. Supporting in-home caregivers in symptom assessment (SA) may improve suffering among older adults. Objective(s). To test the feasibility of a SA-Toolkit for caregivers to assess and track older adults' symptoms. Method(s). With multi-stakeholder input, we created a SA-Toolkit consisting of illustrations depicting symptoms, a validated 5-faces severity scale, and an easy-touse tracking system with phone numbers of family/ friends/clinicians to contact if symptoms worsened. We recruited English-speaking patients $65 years old and their caregivers from a home-based geriatrics program in San Francisco. Using validated questionnaires at baseline and 1-week, we assessed patients' symptoms, patients' and clients' self-efficacy with SA (5- point Likert scale), and acceptability (i.e., recommend to others). We used Wilcoxon signed-rank tests. Results. Eleven patient-caregiver dyads participated. Patients were 84.7 years old (SD 5.7), 81.8% women, and 27.3% non-white. From baseline to 1-week, the mean number of symptoms decreased (3.7 (1.5) at baseline to 2.6 (1.8) at follow-up, p¼0.03). Specifically, the number of patients with pain decreased from 63.6% to 36.4%, anxiety 54.6% to 18.2%, depression 45.5% to 27.3%, and loneliness 36.4% to 18.2%. Caregiver self-efficacy increased (4.6 (0.3) to 4.8 (0.3), p¼0.09). Patients found the symptom illustrations easy-to-use (8.7 on 10-point scale), but the faces scale less so (7.3/10) because it provided ''too many choices.'' Caregivers liked the SA-Toolkit because it was ''easy to use''; nearly all (10/11, 90%) would recommend it to others. Suggested improvements included personalizing materials according to patients' symptoms. Conclusion(s). The SA-Toolkit resulted in decreased symptom burden among patients and higher caregiver self-efficacy in symptom assessment. Acceptability of the Toolkit was high among both patients and caregivers. Impact. A SA-Toolkit is feasible and may help reduce suffering in frail, older patients.

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Self‐Administered Acupressure for Caregivers of Older Family Members: A Randomized Controlled Trial

OBJECTIVE To test whether self‐administered acupressure reduces stress and stress‐related symptoms in caregivers of older family members. DESIGN In this randomized, assessor‐blind, controlled trial, 207 participants were randomized (1:1) to an acupressure intervention or a wait‐list control group. SETTING Community centers in Hong Kong, China. PARTICIPANTS Primary caregivers of an older family member who screened positive for caregiver stress with symptoms of fatigue, insomnia, or depression. INTERVENTION The 8‐week intervention comprised four training sessions on self‐administered acupressure, two follow‐up sessions for learning reinforcement, and daily self‐practice of self‐administered acupressure. MEASUREMENTS The primary outcome was caregiver stress (Caregiver Burden Inventory). Secondary outcomes included fatigue (Piper Fatigue Scale), insomnia (Pittsburgh Sleep Quality Index), depression (Patient Health Questionnaire), and health‐related quality of life (QoL) (12‐item Short‐Form Health Survey version 2). An intention‐to‐treat analysis was adopted. RESULTS: Of 207 participants, 201 completed the study. Caregiver stress in the intervention group was significantly lower than that in the control group after 8 weeks (difference = −8.12; 95% confidence interval [CI] = −13.20 to −3.04; P =.002) and at 12‐week follow‐up (difference = −8.52; 95% CI = −13.91 to −3.12; P =.002). The intervention group, relative to the control group, also had significantly improved secondary outcomes of fatigue (difference = −0.84; 95% CI = −1.59 to −0.08; P =.031), insomnia (difference = −1.34; 95% CI = −2.40 to −0.27; P =.014), depression (difference = −1.76; 95% CI = −3.30 to −0.23; P =.025), and physical health‐related QoL (difference = 3.08; 95% CI = 0.28‐5.88; P =.032) after 8 weeks. CONCLUSION: Self‐administered acupressure intervention significantly relieves self‐reported caregiver stress and co‐occurring symptoms in those caring for older family members. Further studies are needed to measure the symptoms objectively and to examine the clinical importance of the observed improvement in caregiver stress. 

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Role of the Infusion Nurse: Caring for the Family/Lay Caregiver of Older Adults

Approximately 43 500 000 family caregivers provide unpaid care to an adult or child. Most caregivers provide care to older adults, most often parents. Caregivers are often ill-prepared to assist their loved ones, creating or increasing caregiving burden and/or risk of compassion fatigue, potentially leading to critical "caregiving tipping points." Identifying families who are experiencing increased burden or risk of compassion fatigue is a skill that nurses, including infusion nurses, who have unique entree into the caregiving situation, should develop. The purpose of this article is to describe "impending" tipping points before they occur and to offer solutions for how nurses can help caregiving families identify them and access additional supportive services.

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Rituals of Care: Karmic Politics in an Aging Thailand

End-of-life issues are increasingly central to discussions within medical anthropology, the anthropology of political action, and the study of Buddhist philosophy and practice. Felicity Aulino's Rituals of Care speaks directly to these important anthropological and existential conversations. Against the backdrop of global population aging and increased attention to care for the elderly, both personal and professional, Aulino challenges common presumptions about the universal nature of "caring." The way she examines particular sets of emotional and practical ways of being with people, and their specific historical lineages, allows Aulino to show an inseparable link between forms of social organization and forms of care. Unlike most accounts of the quotidian concerns of providing care in a rapidly aging society, Rituals of Care brings attention to corporeal processes. Moving from vivid descriptions of the embodied routines at the heart of home caregiving to depictions of care practices in more general ways-care for one's group, care of the polity-it develops the argument that religious, social, and political structures are embodied, through habituated action, in practices of providing for others. Under the watchful treatment of Aulino, care becomes a powerful foil for understanding recent political turmoil and structural change in Thailand, proving embodied practice to be a vital vantage point for phenomenological and political analyses alike.

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Review and Selection of Online Resources for Carers of Frail Adults or Older People in Five European Countries: Mixed-Methods Study

Background: Informal carers have a crucial role in the care of older people, but they are at risk of social isolation and psychological exhaustion. Web-based services like apps and websites are increasingly used to support informal carers in addressing some of their needs and tasks, such as health monitoring of their loved ones, information and communication, and stress management. Despite the growing number of available solutions, the lack of knowledge or skills of carers about the solutions often prevent their usage.; Objective: This study aimed to review and select apps and websites offering functionalities useful for informal carers of frail adults or older people in 5 European countries (Cyprus, Greece, Italy, Portugal, and Sweden).; Methods: A systematic online search was conducted from January 2017 to mid-March 2017 using selected keywords, followed by an assessment based on a set of commonly agreed criteria and standardized tools. Selected resources were rated and classified in terms of scope. Focus groups with informal carers were conducted to validate the list and the classification of resources. The activities were conducted in parallel in the participating countries using common protocols and guidelines, a standardization process, and scheduled group discussions.; Results: From a total of 406 eligible resources retrieved, 138 apps and 86 websites met the inclusion criteria. Half of the selected resources (109/224, 48.7%) were disease-specific, and the remaining resources included information and utilities on a variety of themes. Only 38 resources (38/224, 17.0%) were devoted specifically to carers, addressing the management of health disturbances and diseases of the care recipient and focusing primarily on neurodegenerative diseases. Focus groups with the carers showed that almost all participants had no previous knowledge of any resource specifically targeting carers, even if interest was expressed towards carer-focused resources. The main barriers for using the resources were low digital skills of the carers and reliability of health-related apps and websites. Results of the focus groups led to a new taxonomy of the resources, comprising 4 categories: carer's wellbeing, managing health and diseases of the care recipient, useful contacts, and technologies for eldercare.; Conclusions: The review process allowed the identification of online resources of good quality. However, these resources are still scarce due to a lack of reliability and usability that prevent users from properly benefiting from most of the resources. The involvement of end users provided added value to the resource classification and highlighted the gap between the potential benefits from using information and communication technologies and the real use of online resources by carers.

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Race Differences in Characteristics and Experiences of Black and White Caregivers of Older Americans

Background and Objectives Racial disparities in health and socioeconomic characteristics of older adults have implications for the experiences of their family and unpaid caregivers, but knowledge to date has primarily drawn from convenience samples. Using a population-based sample, we examine associations between caregiver race and caregiving-related effects. Research Design and Methods Study participants include white (n = 992) and black (n = 556) respondents to the 2015 National Study of Caregiving who assisted community-dwelling older adults with disabilities who participated in the National Health and Aging Trends Study. Guided by Pearlin's Stress Process Model, hierarchical logistic regression models were constructed to examine race differences in caregiving-related effects after adjusting for caregiving context, stressors, and resources. Results Relative to white caregivers, blacks more often provided in excess of 40 hr of care per week (54.3% vs 38.6%) and more often cared for an older adult with dementia (27.1% vs 20.7%) who was living below the federal poverty line (31.7% vs 11.9%) or was Medicaid-eligible (42.2% vs 11.8%). Black caregivers more often used supportive services (32.9% vs 24.8%). In fully adjusted regression models, black caregivers were more likely to report gains and less likely to report emotional difficulty than whites. Service utilization did not attenuate caregiving-related emotional difficulty or participation restrictions, regardless of race. Discussion and Implications Findings highlight caregiving disparities and counterintuitive differences in experiences and indicate the importance of identifying supports such as paid family leave and faith and community-based programming to better support community-dwelling low-income older adults and their family and unpaid caregivers. 

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Quality of Care Perceived by Older Patients and Caregivers in Integrated Care Pathways With Interviewing Assistance From a Social Robot: Noninferiority Randomized Controlled Trial

Background: Society is facing a global shortage of 17 million health care workers, along with increasing health care demands from a growing number of older adults. Social robots are being considered as solutions to part of this problem.Objective: Our objective is to evaluate the quality of care perceived by patients and caregivers for an integrated care pathway in an outpatient clinic using a social robot for patient-reported outcome measure (PROM) interviews versus the currently used professional interviews. Methods: A multicenter, two-parallel-group, nonblinded, randomized controlled trial was used to test for noninferiority of the quality of care delivered through robot-assisted care. The randomization was performed using a computer-generated table. The setting consisted of two outpatient clinics, and the study took place from July to December 2019. Of 419 patients who visited the participating outpatient clinics, 110 older patients met the criteria for recruitment. Inclusion criteria were the ability to speak and read Dutch and being assisted by a participating health care professional. Exclusion criteria were serious hearing or vision problems, serious cognitive problems, and paranoia or similar psychiatric problems. The intervention consisted of a social robot conducting a 36-item PROM. As the main outcome measure, the customized Consumer Quality Index (CQI) was used, as reported by patients and caregivers for the outpatient pathway of care. Results: In total, 75 intermediately frail older patients were included in the study, randomly assigned to the intervention and control groups, and processed: 36 female (48%) and 39 male (52%); mean age 77.4 years (SD 7.3), range 60-91 years. There was no significant difference in the total patient CQI scores between the patients included in the robot-assisted care pathway (mean 9.27, SD 0.65, n=37) and those in the control group (mean 9.00, SD 0.70, n=38): P=.08, 95% CI -0.04 to 0.58. There was no significant difference in the total CQI scores between caregivers in the intervention group (mean 9.21, SD 0.76, n=30) and those in the control group (mean 9.09, SD 0.60, n=35): P=.47, 95% CI -0.21 to 0.46. No harm or unintended effects occurred. Conclusions: Geriatric patients and their informal caregivers valued robot-assisted and nonrobot-assisted care pathways equally.Trial Registration: ClinicalTrials.gov NCT03857789; https://clinicaltrials.gov/ct2/show/NCT03857789.

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Psychological interventions for depression among informal caregivers of older adult populations: protocol of a systematic review and meta-analysis of randomised controlled trials

Introduction: Increased life expectancy has led to an increased demand for family members to provide informal care for their older relatives in the home. Many studies suggest informal caregivers are at greater risk of experiencing symptoms of depression. However, there is a lack of research examining the effectiveness of psychological interventions targeting these symptoms alongside clinical and methodological moderators potentially associated with intervention effectiveness. This review aims to address this gap and will inform the development of a psychological intervention targeting depression among adult-child caregivers of older parents, given many studies show that among informal caregivers of older adults, adult children experience specific difficulties and needs for psychological support. Further, the lack of studies targeting adult children specifically necessitates conducting this review targeting caregivers of older adults in general.; Methods and Analysis: Randomised controlled trials of psychological interventions targeting symptoms of depression among informal caregivers will be identified via a systematic search of electronic databases (PubMed, Cumulative Index to Nursing and Allied Health Literature, Excerpta Medica DataBase, PsycINFO, Cochrane Library and Web of Science) and supplemented by handsearching of previous systematic reviews, reference and forward citation checking, and expert contact. If possible, a meta-analysis will be conducted to examine the: (1) effectiveness of psychological interventions for depression among informal caregivers of older adults, (2) effectiveness of psychological interventions for secondary outcomes such as anxiety, stress, caregiver burden, psychological distress, quality of life, well-being and self-efficacy and (3) moderating effects of clinical and methodological factors on effectiveness.; Ethics and Dissemination: Ethical approval will not be necessary for this study given primary data will not be collected. Results will inform the development of a psychological intervention for adult-child caregivers of older parents and will be disseminated through publication in peer-reviewed journals and conference presentations.; Prospero Registration Number: CRD42020157763. 

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Preparation, Reliability, and Validity of a Japanese Version of the "Satisfaction of Treatment among Caregivers of Dependent Type 2 Diabetic Patients" Questionnaire

The aim of this study was to prepare a Japanese version of the "Satisfaction of Treatment among Caregivers of Dependent Type 2 Diabetic Patients" (STCD2-J) questionnaire, which is used to assess the satisfaction of family caregivers with respect to the treatment for elderly patients with type 2 diabetes mellitus who require support. In addition, the reliability and validity of the STCD2-J questionnaire were analyzed. A Japanese version of the original STCD2 questionnaire was prepared, revised, and back-translated; the back-translated version was sent to the authors of the original version for confirmation. Family caregivers of patients with type 2 diabetes mellitus aged ≥65 years who regularly underwent medical examinations at the diabetes mellitus outpatient clinic of Ise Red Cross Hospital were included. Cronbach's α coefficient was calculated to assess internal consistency. Exploratory factor analyses were performed to assess construct validity, and Pearson's correlation coefficients between STCD2-J score and HbA1c as well as the degree of satisfaction with patients' blood glucose levels, depression, and negative self-assessment of nursing care were calculated to assess criterion-related validity. This study included 208 individuals (55 males and 153 females). Cronbach's α coefficient was 0.88. Factor analyses showed a single-factor structure both with and without rotation. The STCD2-J scores were significantly inversely correlated with HbA1c (r = − 0.27 , P < 0.001). Significant correlations were observed between the STCD2-J scores and degree of satisfaction with patients' blood glucose levels (r = 0.43 , P < 0.001), depression (r = − 0.20 , P = 0.003), and negative self-assessment of nursing care (r = − 0.19 , P = 0.004). The reliability and validity of the STCD2-J questionnaire were confirmed. The STCD2-J questionnaire can be used in Japan as a tool to assess the satisfaction of family caregivers with the treatment of elderly patients with type 2 diabetes mellitus requiring support. 

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Predicting Caregiver Burden in Informal Caregivers for the Elderly in Ecuador

Informal caregivers are the main providers of care for the elderly. The aim of this study is to examine the predictive value of different variables regarding caregivers and their elderly patients with respect to the caregiver's burden. A convenience sample of 688 informal caregivers and 688 elderly people from Ecuador was surveyed. Only households with one caregiver and one elderly person were considered for the study. For informal caregivers, the following standardized measures were obtained: burden (Zarit Burden Interview), neuroticism (Eysenck Personality Questionnaire Revised-Abbreviated, EPQR-A), caregiver's general health (GHQ-12), and social support (modified Duke-UNC Functional Social Support Questionnaire, FSSQ11). For the elderly, we employed standardized measures of cognitive function (short portable mental status questionnaire, SPMSQ), Pfeiffer's test, and functional dependency (Barthel scale/Index, BI). Females were over-represented in caregiving and reported significantly higher burden levels than those of males. In both male and female caregivers, the burden was best predicted by the time of caring, neuroticism, and elderly cognitive impairment. However, some predictors of burden were weighted differently in males and females. The functional independence of the elderly was a significant predictor of burden for male caregivers but not females, while caregiver competence was a significant predictor for females but not males. These variables accounted for more than 88% of the variability in informal caregivers.

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The positive effects of caring for family carers of older adults: a scoping review

The negative effects of caring are well documented; however, positive effects have received less attention. A scoping review of 22 studies published between 2000 and 2018 was conducted regarding the positive effects of family caring for older adults. Our analysis revealed that positive effects are embedded in relationships, summarised in three themes: in relationship with one's self (the carer), for example, personal growth; in relationship with the care recipient, for example, a deepened dyadic relationship; and in relationship with others, for example, new care-related relationships. Seeing the positive effects of caring relationally may shape environmental factors, such as assistive device, social policy or health services development.

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Positive and Negative Impacts of Caring among Adolescents Caring for Grandparents. Results from an Online Survey in Six European Countries and Implications for Future Research, Policy and Practice

Although up to 8% of European youngsters carry out high-intensity care for a family member, adolescent young carers (AYCs), especially those caring for their grandparents (GrPs), remain an under-researched group. This study aimed at addressing the current knowledge gap by carrying out an online survey in Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the United Kingdom. The analysis included a final sample of 817 AYCs aged 15-17 years old. AYCs of grandparents (GrPs) were compared to AYCs of other care recipients (OCRs), in order to identify any difference in positive and negative caregiving outcomes and exposure factors between the two groups. Linear or logistic regression models were built, and multivariate analyses were repeated, including a fixed effect on the country variable. AYCs of GrPs experienced more positive caregiving outcomes than AYCs of OCRs across all six countries. Being female or non-binary, and having a migration background, were associated with more negative outcomes, regardless of the relationship with the care recipient. Further research on intergenerational caregiving outcomes is recommended for shaping measures and policies, which preserve the intergenerational emotional bonds, whilst protecting AYCs from inappropriate responsibilities, undermining their mental health and well-being.

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Positive and negative experiences and life satisfaction among spousal caregivers for frail older adults in urban China: a parallel process model

Objectives Previous literature has suggested that negative and positive aspects of spousal caregiving co-exist. However, positive and negative experiences were often examined independently. This study aimed to empirically test a parallel process model of spousal caregiving. Methods This cross-sectional survey of family caregiving involved 269 frail older adults living in Shanghai, China, in 2016. Quota sampling was conducted to find community-dwelling frail older adults with a primary caregiver. Path analysis was used to identify the relationship between negative and positive caregiving experiences and life satisfaction. Results We found two independent paths towards life satisfaction: (i) activities of daily living were negatively associated with burden, and burden was associated with lower life satisfaction; and (ii) spousal caregivers' self-reported health and financial state were positively associated with positive appraisal, and positive appraisal was associated with higher life satisfaction. Caregiving time contributed to both aspects of caregiving experiences. The covariance between caregiving burden and positive appraisals was not statistically significant. Conclusion Spousal caregiving involves a parallel process. Negative and positive experiences are separate constructs and their associations with life satisfaction vary. We advocate for policy and interventions that promote positive views of caregiving that encourage caregivers to develop a high level of overall life satisfaction despite the hardships of their caregiving tasks. 

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Place4Carers: a mixed-method study protocol for engaging family caregivers in meaningful actions for successful ageing in place

Introduction: Engaging family caregivers could be a critical asset to make the 'ageing-in-place' imperative a reality. This is particularly evident in rural and remote areas, where caregivers can fill the gaps that exist due to the fragmentation of the welfare system. However, there is little knowledge about the expectations that family caregivers have from healthcare services in rural and remote areas.Place4Carers (P4C) project aims to co-produce an innovative organisational model of social and healthcare services for family caregivers of older citizens living in Vallecamonica (Italy). The project is expected to facilitate ageing-in-place for older citizens, thus helping caregivers in their daily care activities.; Methods and Analysis: P4C is a community-based participatory research project featuring five work packages (WPs). WP1 consists of a survey of unmet needs of caregivers and older people receiving services in Vallecamonica. WP2 consists of a scoping literature review to map services that provide interventions of support to caregivers living in remote areas and promote engagement. WP3 organises co-creation workshops with caregivers to co-design, co-manage, and co-assess ideas and proposals for shaping caregiver-oriented services and organisational models. WP3 enriches the results of WP1 (survey) and WP2 (scoping literature review), and aims to co-create new ideas for intervention support with and for caregivers in relation to the objectives, features and characteristics of a new service able to address the caregivers' needs and expectations. WP4 tests the service ideas co-created in WP3 through piloting an intervention based on ideas co-created with caregivers. Finally, WP5 assesses the transferability of the intervention to other similar contexts.; Ethics and Dissemination: The study has been approved by the Ethics Committees of the Department of Psychology of Università Cattolica del Sacro Cuore and Politecnico of Milan. Results will be disseminated through peer-reviewed journals, scientific meetings and meetings with the general population.

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Pilot study of a telehealth perioperative physical activity intervention for older adults with cancer and their caregivers

Background: Older adults undergoing cancer surgery are at greater risk for poor postoperative outcomes. Caregivers also endure significant burden. Participation in perioperative physical activity may improve physical functioning and enhance overall well-being for both patients and caregivers. In this study, we assessed the feasibility of a personalized telehealth intervention to enhance physical activity for older (≥ 65 years) gastrointestinal (GI) and lung cancer surgery patients/caregivers. Methods: Participants completed four telehealth sessions with physical therapy/occupational therapy (PT/OT) before surgery and up to 2 weeks post-discharge. Outcomes included preop geriatric assessment, functional measures, and validated measures for symptoms and psychological distress. Pre/post-intervention trends/trajectories for outcomes were explored. Results: Thirty-four patient/caregiver dyads (16, GI; 18, lung) were included. Accrual rate was 76% over 8 months; retention rate was 88% over 2 months. Median for postop of a 6-min walk test, timed up and go, and short physical performance battery test scores improved from baseline to postop. Participant satisfaction scores were high. Conclusion: Our conceptually based, personalized, multimodal, telehealth perioperative physical activity intervention for older patient/caregiver dyads is feasible and acceptable. It offers an opportunity to improve postoperative outcomes by promoting functional recovery through telehealth, behavior change, and self-monitoring approaches. Trial Registration: ClinicalTrials.gov Identifier: NCT03267524.

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Perceptions of health and well-being among older adult caregivers: Comparisons of current caregivers with former and never caregivers

• Current caregivers had less health satisfaction than never caregivers. • Former caregivers experienced better well-being than current caregivers. • There were no differences in depression scores amongst caregiver types. • Income is an important contributor to health outcomes across caregiver types. Older adults with physical and/or cognitive limitations frequently rely on informal caregivers who are often other older adults. This study compared health and well-being outcomes of self-identified, current older adult caregivers with those of former older adult caregivers and older adults who were never caregivers. The study was observational, using cross-sectional survey data. The sample consisted of 186 adults age 65 and older. Survey questions measured perceptions of depression, health satisfaction, and well-being. Regressions compared the outcomes of respondents in the three groups. Controlling for demographic factors, never-caregivers reported greater odds of health satisfaction compared to current caregivers. Former caregivers reported greater well-being compared to current caregivers. Findings suggest that older adulthood caregiving has impacts on health and well-being, both positive and negative. Because older adults are increasingly relied upon to provide informal caregiving, community and provider-based resources, policies, and interventional research addressing unique needs of older caregivers are needed.

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Perceived Need and Acceptability of an App to Support Activities of Daily Living in People With Cognitive Impairment and Their Carers: Pilot Survey Study

Background: Modern technologies, including smartphone apps, have the potential to assist people with cognitive impairment with activities of daily living, allowing them to maintain their independence and reduce carer burden. However, such tools have seen a slow rate of uptake in this population, and data on the acceptability of assistive technologies in this population are limited.; Objective: This pilot study included older adults with cognitive impairment and their carers, and explored the perceived needs for and acceptability of an app that was designed to be a simple assistive tool for activities of daily living. In particular, this study aimed to assess the acceptability of common app functions such as communication, reminder, navigation, and emergency tools in this population, and to compare patients' and carers' responses to them.; Methods: A total of 24 German participants with mild cognitive impairment or dementia and their family carers separately completed two short questionnaires. The first questionnaire asked the participants with cognitive impairment and their carers to self-rate the patients' cognitive impairment levels and affinity to technology. Following a demonstration of the app, participants rated the usability and acceptability of the app and its functions in a second questionnaire.; Results: Participants rated themselves as much less cognitively impaired than their carers did (P=.01), and insight into the level of support they received was low. The majority of the participants (19/24, 79%) and their carers (20/24, 83%) had low affinity to technology, and even after the demonstration, 63% (15/24) of the participants had low interest in using the app. A breakdown of acceptability responses by app function revealed that participants were more amenable to the reminder function, the emergency feature, and a wearable form of the app. Features that centered around carers monitoring participants' movements were reported to be less acceptable to participants.; Conclusions: This study highlights the importance of focusing on acceptability and the consumer's perceptions in the development of assistive technology for older adults with cognitive impairment. Participants showed an aversion to functions they perceived as eroding their independence, while functions that more closely aligned with independence and autonomy were perceived as more acceptable.

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Patient and caregiver perspectives on early identification for advance care planning in primary healthcare settings

Background: As part of a broader study to improve the capacity for advance care planning (ACP) in primary healthcare settings, the research team set out to develop and validate a computerized algorithm to help primary care physicians identify individuals at risk of death, and also carried out focus groups and interviews with relevant stakeholder groups. Interviews with patients and family caregivers were carried out in parallel to algorithm development and validation to examine (1) views on early identification of individuals at risk of deteriorating health or dying; (2) views on the use of a computerized algorithm for early identification; and (3) preferences and challenges for ACP. Methods: Fourteen participants were recruited from two Canadian provinces. Participants included individuals aged 65 and older with declining health and self-identified caregivers of individuals aged 65 and older with declining health. Semi-structured interviews were conducted via telephone. A qualitative descriptive analytic approach was employed, which focused on summarizing and describing the informational contents of the data. Results: Participants supported the early identification of patients at risk of deteriorating health or dying. Early identification was viewed as conducive to planning not only for death, but for the remainder of life. Participants were also supportive of the use of a computerized algorithm to assist with early identification, although limitations were recognized. While participants felt that having family physicians assume responsibility for early identification and ACP was appropriate, questions arose around feasibility, including whether family physicians have sufficient time for ACP. Preferences related to the content of and approach to ACP discussions were highly individualized. Required supports during ACP include informational and emotional supports. Conclusions: This work supports the role of primary care providers in the early identification of individuals at risk of deteriorating health or death and the process of ACP. To improve ACP capacity in primary healthcare settings, compensation systems for primary care providers should be adjusted to ensure appropriate compensation and to accommodate longer ACP appointments. Additional resources and more established links to community organizations and services will also be required to facilitate referrals to relevant community services as part of the ACP process.

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Patient and Caregiver Perceptions of Nursing Home Physicians: Insight from Yelp Reviews, 2009–2018

OBJECTIVES To describe the content of reviews submitted on Yelp that pertain to nursing home (NH) physicians. DESIGN Retrospective qualitative study. SETTING NHs in the United States reviewed on Yelp from 2009 to 2018 with reviews that discussed NH physicians. PARTICIPANTS Physicians in 375 NHs in 31 states. MEASUREMENTS Content analysis was performed to detect recurrent themes and divergent ideas about NH physicians perceived by reviewers. RESULTS: Average rating among NHs with physician reviews was 2.0 (standard deviation = 1.5; range = 1–5). The major themes from content analysis of reviews that discussed physicians were perceived attitudes of clinicians toward patients and caregivers, physician communication with patients or caregivers, and perceived clinical expertise of the physicians. CONCLUSION: Unsolicited online reviews of NHs that comment on patient and caregiver perceptions of physician care represent a small but growing number of online comments about NHs. These reviews contain important information about aspects of physician care valued by NH patients and caregivers. However, the sample of comments about physicians represents a small proportion of online reviews and is not representative of all NHs. As online reviews grow in number and become more representative, these data could be used by physicians to improve perceptions of their care by NH patients and their families, and by NHs to inform expectations of their medical director and attending physicians.

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Overburdened and Underprepared: Medical/Nursing Task Performance Among Informal Caregivers in the United States

Informal caregivers are increasingly performing medical/nursing tasks in the home for adult care recipients, often without adequate support. In the current study, using data from the Caregiving in the U.S. 2015 survey (N = 1,248), we examined associations between performing medical/nursing tasks and caregiver well-being (e.g., physical strain, emotional stress, burden of care). Overall, 58% of caregivers performed medical/nursing tasks. Compared to those who did not, those performing tasks had higher risk of emotional stress, physical strain, and high burden of care. Among task performers, difficulty performing tasks was associated with higher risk of all outcomes; having no choice in caregiving was independently associated with higher risk of emotional stress and physical strain. Caregivers performing medical/nursing tasks, particularly those who find tasks difficult, are at risk for adverse outcomes. New clinical approaches are needed to ensure meaningful conversations about caregivers' willingness, availability, and ability to perform medical/nursing tasks and to provide support for this part of the caregiving role. 

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One size fits all? Contextualizing family-supportive supervision to help employees with eldercare responsibilities

Eldercare can pose significant challenges for both employees and organizations wherein supervisors serve as critical linchpins. To better inform practitioners on how to assist employees with eldercare responsibilities, we investigated important work outcomes of eldercare-supportive supervision (ESS), a specific form of family-supportive supervision. Drawing on the job demands-resources model and social information processing theory, we framed ESS as a critical informational cue and an important job resource in employees' immediate work environment that shapes employee work attitudes and behaviors. For this important segment of the workforce, we hypothesized that ESS could relate to employees' job performance and time banditry through work engagement, and that caregiver burden would moderate these relationships such that the beneficial effects of ESS would be stronger for employees with high caregiver burden. Using a vignette-based experimental (between-person) design, Study 1 (N = 70) found that employees reported significantly higher work engagement in the high (vs. low) ESS condition. Study 2 supported the indirect effects of ESS on employee job performance and time banditry via work engagement in a field sample (N = 162) of nurses with eldercare responsibilities. In Study 3 (N = 257), using a 3-wave time-lagged design, we replicated our findings and further demonstrated the incremental validity of ESS above and beyond other relevant supports. Finally, we demonstrated that the effect of ESS on work engagement and the indirect effects of ESS on job performance and time banditry were stronger for employees with high (vs. low) caregiver burden. Theoretical and practical implications were discussed. 

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Measurement Properties of the CAPACITY Instrument to Assess Perceived Communication With the Health Care Team Among Care Partners of Patients With Cognitive Impairment

Background: The CAregiver Perceptions About CommunIcaTion with Clinical Team members (CAPACITY) instrument measures how care partners perceive themselves to be supported by the patient's health care team and their experiences communicating with the team. Objectives: The objective of this study was to assess the measurement properties (ie, structural validity of the construct and internal consistency) of the CAPACITY instrument in care partners of patients with cognitive impairment, and to examine whether care partner health literacy and patient cognitive impairment are associated with a higher or lower CAPACITY score. Research Design: This was a retrospective cohort study. Subjects: A total of 1746 dyads of community-dwelling care partners and older adults in the United States with cognitive impairment who obtained an amyloid positron emission tomography scan. Measures: The CAPACITY instrument comprises 12 items that can be combined as a total score or examined as subdomain scores about communication with the team and care partner capacity-assessment by the team. The 2 covariates of primary interest in the regression model are health literacy and level of cognitive impairment of the patient (Modified Telephone Interview Cognitive Status). Results: Confirmatory factor analysis showed the CAPACITY items fit the expected 2-factor structure (communication and capacity). Higher cognitive functioning of patients and higher health literacy among care partners was associated with lower communication domain scores, lower capacity domain scores, and lower overall CAPACITY scores. Conclusions: The strong psychometric validity of the CAPACITY measure indicates it could have utility in other family caregivers or care partner studies assessing the quality of interactions with clinical teams. Knowing that CAPACITY differs by care partner health literacy and patient impairment level may help health care teams employ tailored strategies to achieve high-quality care partner interactions.

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Living with Alzheimer Disease and Other Types of Dementia: Stories from Caregivers

This symposium includes twelve personal narratives from people who have provided care to a spouse, parent, another relative, or friend with Alzheimer disease or related dementias (ADRD). People with ADRDs often face years of cognitive decline with memory and thinking that eventually require help from others to assist with their daily activities. Most people caring for older adults in the US are unpaid family members, friends, or other informal caregivers. People providing care often experience emotional and physical stress, or financial burdens. This symposium also includes three commentaries by experts in the fields of bioethics and philosophy, justice in healthcare, family caregiving, and end of life choices. These narratives provide a forum for exploring caregiver needs, suffering, benefits, and joys, as well as opportunities to improve the way we support caregivers and people with dementia and Alzheimer disease. 

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Job Demands and the Effects on Quality of Life of Employed Family Caregivers of Older Adults With Dementia: A Cross-Sectional Study

Background: Employed family caregivers are affected by job demands, which can affect quality of care provided to recipients. However, it is important to understand how job demands and the ability to reconcile employment and caregiving influence family caregivers' quality of life. Purpose: The aim of this study was to examine the extent to which job demands influenced quality of life for employed family caregivers of older adults with dementia in Taiwan. Methods: This cross-sectional study analyzed secondary data from self-completed questionnaires collected from December 2010 to December 2011. Participants were 214 employed family caregivers of older adults with dementia in Taiwan. How job demands and caregiving influence quality of life was determined with hierarchical multiple regression analysis. Job demands included working hours, workplace inflexibility, work inefficiency, and difficulty in reconciling work and family caregiving. Results: After controlling for demographics, caregiving resources, and caregiving role demands, employed family caregivers of older adults with dementia with fewer working hours and greater work efficiency reported significantly better quality of life (β = −.130, p =.049; β = −.263, p <.001) than those with more working hours and less work efficiency. Conclusions/Implications for Practice: Employed family caregivers of older adults with dementia who had more working hours and less work efficiency had a greater likelihood of poorer quality of life than other employed family caregivers. Clinicians could use these findings to identify groups at high risk for poor quality of life. We suggest developing policies and interventions to help employed family caregivers of older adults with dementia to reduce working hours and improve work efficiency in order to improve quality of life, which could also improve quality of care for recipients.

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Informal Elderly Caregiving and Time Spent on Leisure: Evidence from Time Use Survey

This paper examines the risk of time poverty defined as leisure participation among informal caregivers of adults and older people. We draw on the most recent time use survey conducted in Poland, which incorporated more than 28,000 households in 2013. We assess the extent to which caregivers are more likely to experience shortages of time spent on physical activity, hobbies, and social life. Additional information about respondents' time preferences allows us to examine not only the objective and relative time deficits of caregivers, but also the subjective and expressed ones. We distinguish between co-resident caregivers and those living outside the household of care recipients, simultaneously accounting for the differences between male and female caregivers, as well as care provided during working days (Monday-Friday), and that provided on weekends (Saturday-Sunday). Our results indicate that caregivers for adults are in general more likely to allocate less time to physical activity, hobbies, and their social lives. This effect, however, is observed primarily among co-resident caregivers, both male and female. The leisure time of caregivers is more noticeably affected during weekends than on working days. Concurrently, caregivers are more likely to admit that they wish to spend more time on different forms of leisure activity. This confirms the hypothesis of a trade-off between time allocated to elderly care and that allocated to self-care, which can be detrimental to the health, life satisfaction, and wellbeing of informal caregivers.

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

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

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Informal And Formal Home Care For Older Adults With Disabilities Increased, 2004-16

Rates of informal home care use among older adults with disabilities increased from 2004 to 2016, such that in 2016 almost three-quarters of these adults received informal home care. Informal care remains the most common source of home care, even though formal home care use grew at almost twice the rate, with a 6-percentage-point increase to 36.9 percent in 2016.

The article discusses the 36.9 percent increase in rates of informal and formal home care use of older adults with disabilities in the U.S from 2004 to 2016. Topics covered include the engagement of caregivers in the absence of a national system to pay for long-term services, estimates of home care received by cohorts of these adults, and race and regional variations in formal versus informal home care. Also noted is the importance of health care differences in policy making.

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I'm Here, You're There: In-Absentia Caregiver Stress & Transnational Support of Elderly Mothers by Adult Children

Providing support between generations in a transnational family context is understudied in the aging literature. Specifically, this study investigated the stress experiences and stressors experienced by adult children in the United States when providing transnational support to their elderly mothers in India. Information gathered from two focus groups was supplemented by an online survey of 131 adult children. Participants expressed sentiments of worry, sadness, guilt, and especially helplessness at their limited capacity to care for their mothers from a distance. Results indicate that transnational family aged care is an important dimension of aging that requires further research. In particular, "in absentia caregiver stress" is experienced remotely, and has implications for the immigrant adult's health and well-being. 

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Home First: Exploring the Impact of Community-based Home Care for Older Adults and Their Family Caregivers

Given the rapidly expanding older adult population, finding health care approaches that support older adults to age in their choice of place, with an accompanying philosophical re-orientation of health services, is becoming more urgent. We studied the Home Care Home First – Quick Response Project to understand how clients over age 75 and their family caregivers perceived the enhanced community-based services delivered through Home First. Using interpretive description as the methodological design, we explored the experiences of eight older adults and 11 family caregivers; all older adults were enrolled in Home First due to a significant change in their health status. We identified four themes: growing older in chosen places with support, philosophy of care, processes of Home First, and the significance of Home First for clients. Overall, clients and family caregivers responded positively to the Home First services. Clients valued their independence and growing older in places they had specifically chosen.

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The heterogeneous effect of retirement on informal care behavior

It is often argued that the increased labor market participation of seniors threatens family support provided to dependent elderly people. The purpose of this paper is to assess the causal effect of retirement on the frequency of care provided by individuals aged 55-69 years to their elderly parent. Using data from the Survey of Health, Aging and Retirement in Europe (SHARE), we estimate an endogenous switching model that allows the retirement effect to be heterogeneous with respect to observed and unobserved characteristics. To tackle the possible endogeneity of selection into retirement, we use the heterogeneity of retirement rules between and within European countries. On average, being retired does not significantly impact the probability of providing care but significantly increases the frequency of care conditional on being caregiver. The same pattern is observed regardless of the individual observed characteristics, even if the provision of informal care appears to be less sensitive to the retirement status when the child cannot rely on the other parent to provide care or when both parents are in poor health. These results suggest that pension system reforms should not affect the number of caregivers. Some adverse effects on the intensity of involvement among caregivers are nevertheless expected.

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Health-care Workforce Training to Effectively Support Family Caregivers of Seniors in Care

Introduction Family caregivers (FCGs) play an integral, yet often invisible, role in the Canadian health-care system. As the population ages, their presence will become even more essential as they help balance demands on the system and enable communitydwelling seniors to remain so for as long as possible. To preserve their own well-being and capacity to provide ongoing care, FCGs require support to the meet the challenges of their daily caregiving responsibilities. Supporting FCGs results in better care provision to community-dwelling seniors receiving health-care services, as well as enhancing the quality of life for FCGs. Although FCGs rely upon health-care professionals (HCPs) to provide them with support and services, there is a paucity of research pertaining to the type of health workforce training (HWFT) that HCPs should receive to address FCG needs. Programs that train HCPs to engage with, empower, and support FCGs are required. Objective To describe and discuss key findings of a caregiver symposium focused on determining components of HWFT that might better enable HCPs to support FCGs. Methods A one-day symposium was held on February 22, 2018 in Edmonton, Alberta, to gather the perspectives of FCGs, HCPs, and stakeholders. Attendees participated in a series of working groups to discuss barriers, facilitators, and recommendations related to HWFT. Proceedings and working group discussions were transcribed, and a qualitative thematic analysis was conducted to identify key themes. Results Participants identified the following topic areas as being essential to training HCPs in the provision of support for FCGs: understanding the FCG role, communicating with FCGs, partnering with FCGs, fostering FCG resilience, navigating healthcare systems and accessing resources, and enhancing the culture and context of care. Conclusions FCGs require more support than is currently being provided by HCPs. Training programs need to specifically address topics identified by participants. These findings will be used to develop HWFT for HCPs.

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The pains and reliefs of the transitions into and out of spousal caregiving. A cross-national comparison of the health consequences of caregiving by gender

Spousal caregiving offers a unique opportunity to investigate how gender shapes the influence of care responsibilities on health at older ages. However, empirical evidence supporting a causal link between the transitions into and out of caregiving and health is mixed. This study investigates the influence of spousal care transitions on the health of older men and women living in 17 European countries. We use five waves of the Survey of Health, Ageing and Retirement in Europe (SHARE) between the years 2004 and 2015 for a total of 43,435 individuals and 117,831 observations. Health is defined as a Frailty Index calculated from 40 items. Caregiving is defined as intensive help with personal care provided to spouses. Results from asymmetric fixed-effects linear regression models show that the transitions into caregiving have a detrimental effect on health. On the contrary, the transitions out of caregiving have in most cases no beneficial consequences on health. Most importantly, we found evidence supporting differential effects of caregiving transitions by gender and welfare arrangement: the transitions out of caregiving are associated with better health conditions only for Southern and Eastern European women. Our study highlights the asymmetric and gendered nature of care transitions and suggests that the impact of caregiving is somewhat permanent and has long lasting effects for the caregiver. Policies should account for this asymmetry when assessing the impact and consequences of caregiving.

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Female Pakistani carers' views on future formal and informal care for their older relatives in Norway

Background: The aging of Pakistani immigrants in Norway raises questions related to their increased need for care and help from relatives, as well as those concerning what future formal and informal care and healthcare accessibility for older immigrants may look like. The hidden nature of family caregiving means that the circumstances of carers, their views and their dilemmas related to future care are largely invisible. In this study, we explored female Pakistani carers' views of future care and healthcare accessibility for their older relatives in Norway. Methods: Our data included interviews with family carers between the ages of 23 and 40 years old, living in Oslo, Norway. We recruited ten family carers, out of which eight were daughters and two were daughters-in-law. Interviews were conducted by the first author in Urdu or English and were recorded and transcribed verbatim. Results: Our findings revealed several factors that influenced participants' perceptions about formal and informal caregiving, which can be organised into the following themes: 1) caring for family in Norway as in Pakistan, 2) worries about being 'dropped off' at a care home, 3) concerns about being cared for by outsiders, 4) questions about what other people might say and 5) adhering to society's expectations of a 'good' carer. Conclusion: Family carers' traditional views of filial piety do not entirely determine the use of or access to healthcare services of their older relatives. There is a need to develop culturally sensitive healthcare systems so that immigrant families and their carers have more options in choosing care in old age, which in turn will ease their families' care burden. Healthcare professionals and policymakers should not assume that immigrant families will take care of their own older members but should instead secure adequate support for older immigrants and their family carers. 

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Feasibility-Usability Study of a Tablet App Adapted Specifically for Persons with Cognitive Impairment-SMART4MD (Support Monitoring and Reminder Technology for Mild Dementia)

Population ageing within Europe has major social and economic consequences. One of the most devastating conditions that predominantly affects older people is dementia. The SMART4MD (Support Monitoring and Reminder Technology for Mild Dementia) project aims to develop and test a health application specifically designed for people with mild dementia. The aim of this feasibility study was to evaluate the design of the SMART4MD protocol, including recruitment, screening, baseline examination and data management, and to test the SMART4MD application for functionality and usability before utilization in a full-scale study. The feasibility study tested the protocol and the app in Spain and Sweden. A total of nineteen persons with cognitive impairment, and their informal caregivers, individually performed a task-based usability test of the SMART4MD app model in a clinical environment, followed by four-week testing of the app in the home environment. By employing a user-centered design approach, the SMART4MD application proved to be an adequate and feasible interface for an eHealth intervention. In the final usability test, a score of 81% satisfied users was obtained. The possibility to test the application in all the procedures included in the study generated important information on how to present the technology to the users and how to improve these procedures.

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Fear of older adult falling questionnaire for caregivers (FOAFQ‐CG): Evidence from content validity and item‐response theory graded‐response modelling

Aims: (1) Determine the content validity of the Fear of Older Adult Falling Questionnaire‐Caregivers using a panel of gerontological experts and a target sample of family caregivers (Stage 1) and (2) Examine the response patterns of the Fear of Older Adult Falling Questionnaire‐Caregivers and compare it with older adult version of Fear of Falling Questionnaire Revised using graded‐response modelling (Stage 2). Design: Cross‐sectional mixed‐method design. Methods: Five content experts and 10 family caregivers were involved in the Stage 1 study and 53 family caregiver–older adult dyads (N = 106) were included in the Stage 2 study. The content‐validity index and graded‐response modelling were used to analyse data. Results: Among experts, the Fear of Older Adult Falling Questionnaire‐Caregivers content‐validity index for relevancy, importance, and clarity of individual items and total scale ranged from 0.60–1.00 and from 0.77–0.87, respectively. Among family caregivers, the ratings of the item and scale level content‐validity index for relevancy, importance, and clarity ranged from 0.90–1.00 and from 0.95–0.97, respectively. Combining feedback from both groups, we revised one item. Subsequently, the graded‐response modelling revealed that a 1‐factor, 3‐item version of the Fear of Older Adult Falling Questionnaire‐Caregivers had acceptable psychometric properties. Conclusions: The brief 3‐item version of the Fear of Older Adult Falling Questionnaire‐Caregivers is promising for assessing caregivers' fear of their older adult care recipient falling. Impact: A significant concern for family caregivers is fearing that older adult care recipients will fall, but a lack of validated measures limits the study of this phenomena. A 3‐item version of the Fear of Older Adult Falling Questionnaire‐Caregivers has the potential to identify family caregivers with high fear of older adult falling so that fall risk can be appropriately assessed and addressed.

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Family Burden in Caregivers of Elderly with Cognitive Impairment residing in Rural and Tribal Population of a District in Western India -- A Baseline Study

Study Objectives: The objective was to assess cognitive impairment (CI) in adults older than 59 years, residing in rural and tribal population and to assess family burden of those who had significant CI. Materials and Methods: This cross-sectional study was conducted among adults residing in the rural population of a block in a district located in Western India in 2015. A total of 240 households from 12 villages of the block were selected by multistage and random sampling method. Mini-mental state examination and Zarit Burden Interview tools were used to assess CI and burden. Data were entered in MS Excel 2007 and analyzed with descriptive statistics and Chi-squared test. Results: A total of 212 adults aged over 59 years were studied. The overall prevalence of CI was 42.92%. There was a statistically significant difference seen in CI among females as compared to males. Interview of primary care taker showed that 32 (35.16%) caregivers had little or no burden, 53 (58.24%) had mild-to-moderate burden, and 6 (6.59%) had moderate-to-severe burden, while none had a severe burden. Conclusions: Enabling caregivers to provide at home care for longer periods before hospitalization would decrease the burden of CI.

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Factors associated with the burden of family caregivers of elderly patients with femoral neck fracture: a cross-sectional study

Background: This study aimed to study the factors associated with caregiver burden among caregivers of elderly patients with femoral neck fracture. Methods: This cross-sectional study was based on a non-probabilistic sampling of 183 elderly postoperative patients (aged 65 years or older) with femoral neck fracture who were hospitalized in the orthopedic center in our hospital and their family caregivers. Data were collected from January 2016 to June 2019. Patients and family caregivers completed the sociodemographic questionnaire. The Social Support Rating Scale (SSRS), the General Self-Efficacy Scale (GSE), and the Chinese version of the Zarit Burden Interview (ZBI) were used to evaluate social support, self-efficacy, and caregiver burden, respectively. By analyzing the clinical data of patients and family caregivers and combining the factors that affect the caregiver burden in parallel studies, we selected the factors that affected the caregiver burden in this study and conducted a multivariate analysis of these factors. P < 0.05 was considered statistically significant. Results: We observed 176 caregivers aged 69.28 ± 7.19 years old, among whom 52.3% were male, 58.0% lived in the city, 84.0% were spouses of the patients, and 67.0% had a primary school educational background. The ZBI score of the family caregivers was 37.8 ± 8.9, and 82.7% of the caregivers were under a moderate to severe burden. The patient's functional status, Harris score, and pain score and the caregiver's SSRS scores, GSE scores, and the ratio of medical expenses to monthly income per capita were factors that affected the caregiver burden. Conclusions: Most family caregivers of elderly patients with femoral neck fracture are subject to a considerable care burden, and social support and self-efficacy intervention are conducive to reducing the caregiver burden. 

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Factors associated with caregiver burden among adult (19–64 years) informal caregivers – An analysis from Dutch Municipal Health Service data

Due to the ageing population and the rising prevalence of chronic diseases, it is expected that the demand on informal caregivers will increase. Many informal caregivers experience burden, which can have negative consequences for their own health and that of the care recipient. To prevent caregiver burden, it is important to investigate factors associated with this burden. We aimed to identify factors associated with caregiver burden in adult informal caregivers. Among a sample of adult informal caregivers (n = 1,100) of the Dutch region of Zaanstreek‐Waterland, perceived caregiver burden, demographic factors, caregiving situation, health‐related factors and socio‐financial factors were measured as part of the national Health Survey in 2016. Using univariate and multivariate logistic regression analysis, for which a backward selection method was applied, associations with caregiver burden were studied. In the multivariate model, time spent providing informal care was significantly associated with perceived caregiver burden, with an odds ratio (OR) [95% confidence interval] of 7.52 [3.93–14.39] for those spending >16 hr compared to 1–2 hr on informal care. Also providing care to their child(ren) (OR: 2.55 [1.51–4.31]), poor perceived health (OR: 1.80 [1.20–2.68]) and loneliness of the caregiver (OR: 2.05 [1.41–2.99]) were significantly associated with caregiver burden. To possibly prevent and reduce informal caregiver burden, factors associated with such burden should be intervened on. As such, special attention should be paid to caregivers who provide many hours of care or provide care to their child(ren), as well as those who have a poor perceived health themselves and/or experience feelings of loneliness.

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Expanding Perspectives on Family Caregiving

We hope you enjoy the creative perspectives on family caregiving presented by our authors, and that they serve as a catalyst for expanding research and interventions for family caregiving in new and interesting directions.

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Examining the support needs of older male spousal caregivers of people with a long‐term condition: A systematic review of the literature

Aim The aim of this review was to identify and synthesise literature reporting on support needs of older male caregivers, who are providing care for a chronically ill spouse/partner at home. Background Traditionally, informal caregiving has been perceived as a feminised activity. Consequently, caregiving research has been dominated by female samples, and male caregivers are grossly under‐represented. Given the growing recognition of caregiving as a gendered concept, and the rise in number of male caregivers, particularly in later life, the need for better understanding of the needs of male caregivers is important in order to plan effective support for this population. Design A systematic literature review. Methods Four electronic databases and grey literature were systematically searched. Results The systematic search resulted in 3,646 papers, eligibility criteria were applied to the full texts of 104 papers, and 11 papers met the inclusion criteria. Two core themes were identified: the need to maintain masculinity and the provision of social support. Conclusion Findings suggest that men may have a gendered approach to caregiving based on dominant masculine norms. This can be manifested in a reluctance to ask for or accept help and a desire to retain control over caregiving. Findings also revealed isolation and loneliness experienced by older male caregivers, along with a preference for support to address this within a male‐specific context. It is suggested that healthcare professionals should be cognisant of the male caregiver approach and should have an increased awareness of male caregivers support preferences, and of their own gendered assumptions, in order to provide effective support for this population. Implications for practice Nurses have a key role in providing family support. Findings from this review suggest that nurses should be aware of the specific needs of older male spousal caregivers if they are to provide effective care and support to this population group.

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Engaging Caregivers in Health-Related Housing Decisions for Older Adults With Cognitive Impairment: A Cluster Randomized Trial

Background and Objectives Informal caregivers are rarely as involved as they want to be in the housing decisions of cognitively impaired older adults. Lack of awareness of available options and their benefits and risks may lead to decisions that do not reflect older adults' preferences, and to guilt and regret. We assessed the effect of training home care teams in interprofessional shared decision-making (SDM) on the proportion of caregivers who report being active in this decision. Research Design and Methods In a two-arm pragmatic cluster randomized trial with home care teams working in health centers in the Province of Quebec, we randomized health centers to receive training in interprofessional SDM (intervention) or not (control). Eligible caregivers had made a housing decision for a cognitively impaired adult aged 65 years or older who was receiving services from a home care team. The primary outcome was the proportion of caregivers reporting an active role in decision making. We performed intention-to-treat multilevel analysis. Results We consecutively enrolled a random group of 16 health centers and recruited 309 caregivers, among whom 296 were included in the analysis. In the intervention arm, the proportion of caregivers reporting an active role in decision making increased by 12% (95% CI −2% to 27%; p =.10). After removal of an influential cluster outlier, the proportion increased to 18% (95% CI: 7%–29%; p <.01). Discussion and Implications Training home care teams in interprofessional SDM increased caregiver involvement in health-related housing decisions for cognitively impaired older adults.

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Emotion Recognition and Reactivity in Persons With Neurodegenerative Disease Are Differentially Associated With Caregiver Health

Background and Objectives Motivated by the high rates of health problems found among caregivers of persons with neurodegenerative disease, we examined associations between deficits in two aspects of care recipients' socioemotional functioning and their caregivers' health. Research Design and Methods In 2 studies with independent samples (N = 171 and 73 dyads), caregivers reported on care recipients' emotion recognition and emotional reactivity. Caregiver health was assessed using both self-report measures (Studies 1 and 2) and autonomic nervous system indices (Study 2). Results Lower emotion recognition in care recipients was linearly associated with worse self-reported health, faster resting heart rate, and greater physiological reactivity to an acoustic startle stimulus in caregivers. These effects held after accounting for a variety of risk factors for poor caregiver health, including care recipients' neuropsychiatric symptoms. Emotional reactivity showed a quadratic association with health, such that the lowest and highest levels of emotional reactivity in care recipients were associated with lower self-reported health in caregivers. Discussion and Implications Results shed light on the unique associations between two aspects of care recipients' emotional functioning and caregivers' health. Findings suggest potential ways to identify and help caregivers at heightened risk for adverse health outcomes. 

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The effects of offering flexible work practices to employees with unpaid caregiving responsibilities for elderly or disabled family members

Approximately one in 10 employees in Australia, the United States, and Europe have unpaid caregiving responsibilities for elderly or disabled family members. This combination of employment and caregiving roles is problematic when there is conflict between their simultaneous demands. Flexible work practices can be an important mechanism for assisting these employees. However, limited attention has been given to determining the benefits of flexible work practices for these employees, or the process by which these effects arise. We address these gaps via a survey of employees with unpaid caregiving responsibilities for family who are elderly or disabled. Results indicate that greater availability of flexible work practices improves perceptions of workplace support for combining caregiving and employment. This effect was partially and sequentially mediated by disclosure, practice utilization, and practice helpfulness. Additionally, practice availability had a direct positive effect on practice utilization, while disclosure had a direct positive effect on perceived support. Overall, the findings demonstrate the benefits of flexible work practices for employees with caregiving responsibilities. The study also points the way to interventions that can improve the effectiveness of flexible work practices by demonstrating how the potential benefits of these practices are translated into actual improvements in perceived support.

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Effects of a Death Education Intervention for Older People with Chronic Disease and Family Caregivers: A Quasi-Experimental Study

To investigate the effectiveness of a structured death education program for older adults with chronic illness and their family caregivers. This study adopted two-group, nonrandomized quasi-experimental design. Patient–caregiver dyads in the intervention group (N = 40 dyads) engaged in the death education program at the bedside once a week for 5 weeks, and were compared with participants (N = 40 dyads) in the control group who received usual health education. The program consisted of five sessions based on the Interaction Model of Client Health Behavior. Death attitude, death competence, well-being, family function, and satisfaction were measured at baseline (T0), immediately after the intervention (T1), and 1 month later (T2). Data collection was conducted from July 30, 2019, to December 30, 2019. The intention-to-treat analysis The intention-to-treat analysis of between groups at 1-month follow-up revealed that the intervention group had greater decreases in the fear of death (p =.002, 95% CI -2.53, -0.47; p <.001, 95% CI -3.61, -1.65) and death avoidance (p <.001, 95% CI -3.46, -1.84; p <.001, 95% CI -3.89, -2.43), had greater increases in the neutral acceptance (p =.032, 95% CI 0.05, 1.38; p <.001, 95% CI 0.99, 2.56) and death competence (p <.001, 95% CI 4.10, 8.01; p <.001, 95% CI 7.80, 12.11) in patients and caregivers, respectively. There were significant intergroup differences over time for patient well-being of (p <.001, 95% CI 3.06, 9.74) and satisfaction of (p <.001, 95% CI 2.01, 4.59). Results were consistent with the results from the sensitivity analysis. This study demonstrated the feasibility and benefits of death education in hospitals and provided an implementation plan for nursing professionals. Nurses should consider providing death education for older adults with chronic diseases and their families to promote the development of palliative care and the quality of end-of-life.

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The effect of a purpose-built memory support unit on the transition to high level dementia care; Perspectives of multiple participants

Australia faces the challenge of an ageing population. The incidence of people with dementia unable to live in the community is expected to rise leading to demands on care facilities to provide specialised care. This paper reports on the effect a purpose-built Memory Support Unit has on multiple participants during the transition from home, or an aged care residence, to high level dementia care. The aim of this research was to understand the effect of a purpose-built Memory Support Unit on the experiences of those with dementia who are transitioning into this environment, their family or carers and staff. A qualitative descriptive methodology was adopted to frame the research. Face-to-face interviews were conducted with nine family members, two residents and three Registered Nurses. A purpose-built Memory Support Unit may have a positive effect on the older person, their families, carers and staff, thus improving the experience of all participants as the older person transitions into dementia care. Optimising design of the physical environment may foster a more person-centered orientation to care and positive outcomes for residents, family members or carers and staff. Purpose built environments may have a meaningful subjective effect on the wellbeing of older people during the transition from their residence to permanent dementia care, their family, carers and staff. It is recommended that architects, funding agencies and aged care providers engage with the growing body of evidence that purpose-built environments, such as the Memory Support Unit, to enhance the quality of the experience of those transitioning to high level dementia care, their family or carers and staff.

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Evaluation of a Collaborative Advance Care Planning Intervention among Older Adult Home Health Patients and Their Caregivers

Background: Caregivers are decision stakeholders; yet, few interventions have been developed to help patients and caregivers collaborate on advance care planning (ACP). Objective: To evaluate a theory-based ACP pilot intervention, Deciding Together, to improve decisional quality, readiness, collaboration, and concordance in ACP decisions for older adult home health (HH) patients and caregivers. Design: A one-group, pre- and posttest study using matched questionnaires was conducted. The intervention consisted of a clinical vignette, theoretically guided conversation prompts, and a shared decision-making activity. Setting/Subjects:N = 36 participants (n = 18 HH patients; n = 18 family and nonfamily caregivers) were purposively recruited from a HH agency to participate in the intervention at patients' homes. Measurements: Demographic and baseline measures were collected for relationship quality, health status, and previous ACP engagement. Outcome measures included perceptions of collaboration, readiness for ACP, concordance in life-sustaining treatment preferences (cardiopulmonary resuscitation, antibiotics, artificial nutrition and hydration, and mechanical ventilation), and decisional conflict. Descriptive statistics, Cohen's κ coefficients, paired t tests, McNemar's tests, and Wilcoxon signed-rank tests (and effect size estimates, r = z/√N) were calculated using R-3.5.1 (p < 0.05). Single value imputation was used for missing values. Results: While no significant differences were found for perceptions of collaboration, and readiness for ACP, patients (r = 0.38, p = 0.02) and caregivers (r = 0.38, p = 0.02) had reduced decisional conflict at posttest. Patients' and caregivers' agreement increased by 27.7% for an item assessing patients' preference for artificial nutrition and hydration (p = 0.03). Conclusions: This study suggests that collaborative ACP decision making may improve decisional conflict for older adult HH patients and their caregivers.

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Evaluation of 1-Year in-Home Monitoring Technology by Home-Dwelling Older Adults, Family Caregivers, and Nurses

Introduction: Population aging is increasing the needs and costs of healthcare. Both frailty and the chronic diseases affecting older people reduce their ability to live independently. However, most older people prefer to age in their own homes. New development of in-home monitoring can play a role in staying independent, active, and healthy for older people. This 12-month observational study aimed to evaluate a new in-home monitoring system among home-dwelling older adults (OA), their family caregivers (FC), and nurses for the support of home care. Methods: The in-home monitoring system evaluated in this study continuously monitored OA's daily activities (e.g., mobility, sleep habits, fridge visits, door events) by ambient sensor system (DomoCare (R)) and health-related events by wearable sensors (Activity tracker, ECG). In the case of deviations in daily activities, alerts were transmitted to nurses via email. Using specific questionnaires, the opinions of 13 OA, 13 FC, and 20 nurses were collected at the end of 12-months follow-up focusing on user experience and the impact of in-home monitoring on home care services. Results: The majority of OA, FC, and nurses considered that in-home sensors can help with staying at home, improving home care and quality of life, preventing domestic accidents, and reducing family stress. The opinion tended to be more frequently favorable toward ambient sensors (76%; 95% CI: 61-87%) than toward wearable sensors (Activity tracker: 65%; 95% CI: 50-79%); ECG: 60%; 95% CI: 45-75%). On average, OA (74%; 95% CI: 46-95%) and FC (70%; 95% CI: 39-91%) tended to be more enthusiastic than nurses (60%; 95% CI: 36-81%). Some barriers reported by nurses were a fear of weakening of the relationship with OA and lack of time. Discussion/Conclusion: Overall, the opinions of OA, FC, and nurses were positively related to in-home sensors, with nurses being less enthusiastic about their use in clinical practice.

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Development and validation a nursing care protocol with educational interventions for family caregivers of elderly people after stroke

Objective: development and validation the content of a nursing care protocol with educational interventions for family caregivers of elderly people after stroke. Methods: a methodological study conducted in three stages: (1) protocol development through literature review; (2) pretest with multidisciplinary team, analyzed with literature articulation; (3) protocol validation by the Delphi Technique. Results: the protocol was structured in the following areas: Disease Guidelines; Emotional Support; Using the Health Care Network; Diet; Airways; Medications; Hygiene; Skin Care; Disposal; Dressing/Undressing; Positioning and Transfer; Fall Prevention. In the pretest, eight experts assessed protocol clarity and content. In validation, there were two rounds by the Delphi Technique. The validated protocol consisted of 12 domains, containing 42 items and 240 care guidelines. Conclusion: the protocol qualifies the transition of care after hospital discharge assisting nurses in home care practice.

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Development and Field Testing of a Long-Term Care Decision Aid Website for Older Adults: Engaging Patients and Caregivers in User-Centered Design

Background and Objectives Decisions about long-term care and financing can be difficult to comprehend, consider, and communicate. In a previous needs assessment, families in rural areas requested a patient-facing website; however, questions arose about the acceptability of an online tool for older adults. This study engaged older adults and family caregivers in (a) designing and refining an interactive, tailored decision aid website, and (b) field testing its utility, feasibility, and acceptability. Research Design and Methods Based on formative work, the research team engaged families in designing and iteratively revising paper drafts, then programmed a tailored website. The field test used the ThinkAloud approach and pre-/postquestionnaires to assess participants' knowledge, decisional conflict, usage, and acceptability ratings. Results Forty-five older adults, family members, and stakeholders codesigned and tested the decision aid, yielding four decision-making steps: Get the Facts , What Matters Most, Consider Your Resources, and Make an Action Plan. User-based design and iterative storyboarding enhanced the content, personal decision-making activities, and user-generated resources. Field-testing participants scored 83.3% correct on knowledge items and reported moderate/low decisional conflict. All (100%) were able to use the website, spent an average of 26.3 min, and provided an average 87.5% acceptability rating. Discussion and Implications A decision aid website can educate and support older adults and their family members in beginning a long-term care plan. Codesign and in-depth interviews improved usability, and lessons learned may guide the development of other aging decision aid websites. 

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Development and Evaluation of a Post-Hip Fracture Instructional Workshop for Caregivers

Background and Purpose: A hip fracture is an unexpected traumatic event. Caregivers of patients with an acute hip fracture have only short time to learn the new skills of postoperative care and handling of the patient. This sudden responsibility changes the life of the caregivers who perceive a higher level of preoccupation about the care of their family member/friend. The objective of this study was to develop and test feasibility for a post-hip fracture inpatient instructional workshop for caregivers of older adults with hip fracture and to establish their knowledge of hip fracture recovery and perceptions of the utility and satisfaction with the workshop. Methods: This 2-part study was conducted at the University Hospital of Granada, Spain, from September 2016 to April 2017. We invited caregivers of patients (60 years of age or older) hospitalized for a surgically treated fall-related hip fracture to attend an informational and skill development hospital-based workshop (60-90 minutes in duration) on post-discharge management strategies. Following the workshop, we invited caregivers to complete a questionnaire to obtain their knowledge about care after hip fracture and their perceived concerns. Furthermore, we requested that they provide feedback on workshop utility and satisfaction (0-10 points) and suggestions for improving the workshop. Results and Discussion: We delivered 42 workshops over an 8 month period. One hundred three caregivers attended the sessions and enrolled in the study, mean (SD) age: 52.1 (12.8) years. Sixty-nine percent of the caregivers were women. Caregivers' main concern was apprehension for delivering physical care to their family member/friend (75%), followed by lack of time (42%). Caregivers who were employed were 3.16 times as likely to be concerned about time availability to provide care for their family member/friend. The median (Q1, Q3) of both workshop utility and satisfaction was 10 (10, 10), minimum-maximum: 7 to 10. Conclusions: Caregivers in this study stated that the workshop was useful and satisfactory. Because caregivers play such a vital role in recovery after hip fracture, providing knowledge and skill development as part of health care delivery may support more person-centered care.

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Determinants of overburdening among informal carers: a systematic review

Background: The world's population is ageing, resulting in rising care demands and healthcare costs, which in turn lead to a shift from formal to informal care. However, not only is the number of potential informal carers fast decreasing, but also informal caregivers are experiencing a higher caregiver burden. This literature review aims to synthesize the literature on the common determinants of caregiver burden in Western countries, to help ensure future continuation of informal care in the home context, and to improve or sustain the quality of life of caregivers and patients alike. Method: A systematic review of peer-reviewed articles included in PubMed, Scopus, and/or PsychInfo was conducted. Results: Seventeen articles were included. The most important predictors were the duration of caregiving and the patient's dependency level, in terms of both physical and mental dependency stemming from decreased cognitive capacity or behavioural problems. Some specific illnesses and role conflicts or captivity also increased caregiver burden, whereas social support lowered it. Being a female caregiver or having an adult-child relationship led to a higher burden. Conclusions: The most important predictors of caregiver burden are the duration of caregiving and the patient's dependency level. In addition, the patient's behavioural problems and cognitive capacity determine dependency level, and thus care burden. Interventions to relieve burden need to be adapted to the illness trajectory of specific diseases and corresponding needs for social support for both the recipient and the caregiver. Changing role expectations, leading to men being more involved, could reduce the disproportionately high burden for women.

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Dementia Caregiving Research: Expanding and Reframing the Lens of Diversity, Inclusivity, and Intersectionality

This forum expands and reframes the lens of dementia caregiving research among diverse racial and ethnic groups to better understand the unique needs, stressors, and strengths of multicultural and racial-ethnic family caregivers in the United States. By providing more diverse and inclusive knowledge on caregiving to older adults in the United States, we can create a new path forward with regards to caregiving research. Throughout the article, major questions and answers are supported by critiquing some of the caregiving literature. Discussions are provided to help create inclusive ways of conceptualizing caregiving research and using methodological approaches to reflect the diversity of caregivers and care recipients in the United States. Expanding and reframing the conceptual and methodological lens of diversity, inclusivity and intersectionality can provide evidence to support effective policy, practice, and care in addressing the needs of diverse groups of caregivers and older adults living with dementia. 

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Consumer expectations of self‐managing aged home care packages in Australia

This study investigated the expectations of older people who chose to participate in a self‐management trial of home aged care packages conducted by COTA Australia. Empowerment theory is used to interpret the findings. All Australian home aged care support packages are delivered using a consumer directed care (CDC) model, and most are managed by an aged care provider. The COTA Australia trial gave older people the opportunity to self‐manage their package and have more control over spending and less constraints on its use. This study examined three questions: (a) what motivated the older person, or an informal carer acting on their behalf, to participate in the self‐managing trial; (b) what outcomes they expected (c) and what was their attitude towards risk. The trial was conducted over 9 months in 2018–2019. Seven registered home aged care providers from six Australian states and territories recruited 103 consumers to the trial, with having an informal carer act on their behalf. Online questionnaires with consumers (n = 103) and informal carers (n = 66), and 18 semi‐structured interviews showed that older consumers and their informal carers had high expectations that self‐management would result in: increased choice and control and more flexible use of funds; lower administration fees and more money to spend on services and supports; improved relations with service providers and the opportunity to select support staff. Participants wanted clear information and guidelines and support from their provider. While wanting to have more control and be empowered, few respondents noted concerns about possible risks. This finding raises questions about consumers' awareness of risks that are documented in the literature, and it challenges providers to balance risk management with facilitating independence and autonomy. 

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Comparing Changes and Transitions of Home Care Clients in Retirement Homes and Private Homes

Long-stay home care clients mostly reside in private homes or retirement homes, and the type of residence may influence risk factors for long-term care placement. This multi-state analytic study uses RAI-Home Care and administrative data from the Hamilton Niagara Haldimand Brant Local Health Integration Network to model conceptualized states of risk at baseline through a 13-month follow-up period. Modifiable risk factors in these states were client loneliness or depressive symptoms, and caregiver distress. A higher adjusted likelihood of being discharged deceased was found for the lowest-risk clients in retirement homes. Adjusting for client, service, and caregiver characteristics, retirement home residency was associated with higher likelihood of placement in a long-term care home; reduced caregiver distress; and increased client loneliness/depression. As an alternative to private home settings as the location for aging in place among these long-stay home care clients, retirement home residency represents some trade-offs between client and informal caregiver.

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Communication neglect, caregiver anger and hostility, and perceptions of older care receivers' cognitive status and problem behaviors in explaining elder abuse

The goal of the current study was to examine the roles of communication neglect and caregiver traits (i.e., anger and hostility) in explaining caregivers' tendency to engage in abusive behaviors – specifically, whether such tendency is likely to occur in situations where caregivers perceive older care receivers displaying cognitive impairment or problem behaviors. Two hundred fifty-five informal caregivers completed an online questionnaire via Qualtrics. Treating communication neglect as the mediator, and caregiver anger and hostility as moderators, the results suggested that caregivers who perceived their older care receivers displaying problem behaviors were more likely to engage in communication neglect, which then led to psychological abuse. Moreover, the joint effects of communication neglect and caregiver anger and hostility intensified caregivers' likelihood to commit psychological abuse. These findings provide initial evidence to further investigate the importance of communication neglect and dysfunctional behaviors such as anger and hostility in explaining psychological abuse in informal caregiving for older adults. 

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Characteristics of the skills of caregivers of people with dementia: observational study

Background: Due to demographic change within an aging population as announced by the WHO, the involvement of caregivers is essential. Caregivers are required to change their roles within the family unit. Such life transitions experienced by caregivers to people confronted with dementia-type pathologies are sometimes difficult, necessitating the acquisition and development of certain skills. Few studies have shown that caregivers develop specific and essential skills to promote quality care and safety. To characterize their skills, there is a need to identify the abilities, knowledge, resources, obstacles and constraints that contribute to caregivers' transitions. The research question for this study was: What skills do caregivers use to care for their loved one with dementia? Methods: Qualitative observational research based on the epistemological paradigm of socioconstructivist knowledge was conducted. The study was carried out in the canton of Geneva and recruitment was carried out through the participation of the Alzheimer's association and the association for the support and assistance of elderly people in medical and social institutions and their families (APAF). Observations and semi-structured interviews were conducted in the homes of 14 family carers caring for their loved one with dementia. The observations were transcribed on observation grids and the interviews were recorded. Subsequently, according to the classic distinction of Denzin (Interpretive interractionism, 2001), we analysed the observation notes and verbatims, then as recommended by Miles et al. (Qualitative data analysis: a methods sourcebook, 2014), two researchers triangulated the results. Results: The results identified five types of situations regularly experienced by caregivers. The study characterized 11 skills that caregivers use to cope with their daily lives. The learning process and maladaptive behaviours in caring for their loved ones with dementia were also highlighted. Conclusion: This study was able to point out that today's caregivers have developed more competency than their predecessors. This evolution can be explained by new paradigms of care requiring caregivers to be more involved. Although some caregivers need training, others through their experiences can act upon and provide knowledge. To improve the quality and safety of care for people with dementia, this expertise can be the subject of partnerships between caregivers and health care staff. 

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Change Over Time in Caregiving Networks for Older Adults With and Without Dementia

Objectives We provide national estimates of caregiving networks for older adults with and without dementia and examine how these networks develop over time. Most prior research has focused on primary caregivers and rarely on change over time. Method We identify a cohort of older adults continuously followed in the National Health and Aging Trends Study between 2011 and 2015 and receiving help from family members or unpaid caregivers in 2015 (n = 1,288). We examine differences by dementia status in network size, types of assistance and task sharing, and composition—differentiating between "specialist" and "generalist" caregivers helping in one versus multiple activity domains. Multinomial regression is used to estimate change over time in network task sharing and composition. Results In 2015, older adults with dementia had larger caregiving networks involving more task sharing than those without dementia and more often relied on generalist caregivers, especially the subset assisting with medical, household, and mobility or self-care activities. Uniformly greater reliance over time on these more intensely engaged generalist caregivers chiefly accounts for larger dementia networks. Discussion Findings lend support to the need for caregiver training on managing multiple task domains and—for dementia caregivers in particular—task-sharing skills. More generally, the design of new approaches to better support older adults and their caregivers should consider the complexity, heterogeneity, and change over time in caregiving networks. 

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Caring for the caregiver: a systematic review characterising the experience of caregivers of older adults with advanced cancers

The steady advances in oncology bring a host of therapeutic options for older adults (≤65 years old) with cancer. As these patients experience this proliferation of anticancer therapies, their caregivers too have witnessed their role rapidly expanding and evolving as they care for these individuals. To better understand the caregiver experience, a review of the current literature on informal caregiving and cancer caregiving was conducted. These informal caregivers are often individuals with a strong personal connection to the person with advanced cancer, such as a close relative, spouse/partner or friend. Caregivers provide a broad range of assistance with most aspects of day-to-day life. However, we have limited knowledge of the impact of this role on the caregivers themselves, particularly in the context of an older adult patient and their unique needs. Here, we explore the data on caregiver experience when caring for a person with advanced cancers-specifically, we characterise the symptom burden and effects on the caregiver well-being with emphasis on the care of older adults with cancer. 

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Caring for elderly parents: Perceived filial obligations among Maghrebine immigrants in Italy

The migrant population in Southern European countries is aging. In the next future, long-term care needs of immigrant individuals will be a major issue in the evolution of social policies in these countries. In this context, it becomes important to examine what are the norms of filial obligations that govern the exchange of social support within migrant families. The study focuses on solidarity norms and support expectations among Mahgrebine immigrants living in Italy. It is shown that: i. intergenerational co-residence is seen as the best strategy to cope with the care need of elderly parents; ii. only a minority of respondents, especially those born in Italy or arrived before age 6, think that providing economic support or hiring a professional carer is a good solution. The importance of cultural and religious motivations at the basis of norms of filial obligations was explicitly, particularly as far as cohabitation is concerned. The majority of respondents held a gender-neutral view with respect to the sharing of responsibilities, although some gendered divisions emerged. Respondents who either were born in Italy or migrated before age six are considerably more likely to hold gender-neutral views on the division of informal care work.

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Carer burden and dyadic attachment orientations in adult children-older parent dyads

• Anxious-avoidant attachment pairings predict increased burden in adult-child carers. • Similar attachment insecurity in parent-child dyads do not predict burden. • Taking a dyadic approach to examining attachment in ageing families is critical.

This study takes an interpersonal approach to the study of carer burden in families where adult children care for older parents. The aim of the study was to determine whether different pairings of attachment insecurity in older parent-adult child dyads are predictive of carer burden. Seventy dyads whereby adult children provided weekly care to their older parents completed self-report measures of attachment. Adult children also completed a measure of carer burden. Anxious-avoidant attachment insecurity pairings in parent-child dyads were associated with increases in carer burden. However, anxious-anxious and avoidant-avoidant attachment insecurity pairings were not associated with burden. The attachment insecurity of the care-recipient was found to moderate the association between a carer's attachment insecurity and burden, but only when the care-recipient's attachment insecurity differed to that of the carer's. These findings have implications for research, policy, and practice in aged care. The findings highlight the importance of focusing on attachment insecurity in aging families as well as taking a dyadic perspective when studying caregiving outcomes such as carer burden. The findings suggest that carers who may require the greatest support are those whose parents demonstrate contrasting orientations of attachment insecurity. 

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Caregiving Attitudes and Needs of Later-generation Chinese-American Family Caregivers of Older Adults

Due to linguistic and cultural adjustments to a new country, first-generation immigrant's caregiving challenges have been well-documented. However, little is known of U.S.-born, U.S.-educated, English-speaking later-generation caregivers' (2nd, 2.5, and 3rd-generation) attitudes and needs regarding caregiving. Given this context, we interviewed 40 later-generation Chinese-American caregivers in Seattle and Houston. Caregivers had a mean age of 59 years, were married, college-educated, and working females with children. The later the caregiver's generation, the higher their acculturation, but their sense of filial responsibility remained high across generations. While Seattle caregivers wish to live in a high-quality, long-term care facility, Houston caregivers prefer to live with their adult children for their future care. Findings emphasize the importance of understanding the caregivers' ethnically and generationally specific caregiving attitudes and preferences for geographically specific services. Collaborating with existing local organizations, it is critical to ensure that the provision of services meets local Chinese-American caregivers' needs and preferences.

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Caregivers' Experiences Regarding Training and Support in the Post-Acute Home Health-Care Setting

Background: Post-acute home health-care (HHC) services provide a unique opportunity to train and support family caregivers of older adults returning home after a hospitalization. To enhance family-focused training and support strategies, we must first understand caregivers' experiences.; Objective: To explore caregivers' experiences regarding training and support for managing older adults' physical functioning (PF) needs in the post-acute HHC setting.; Method: We conducted a qualitative descriptive study using semi-structured telephone interviews of 20 family caregivers. Interviews were recorded, transcribed, and analyzed using conventional content analysis.; Results: We identified the following primary categories: facilitators to learning (eg, past experience, learning methods), barriers to learning (eg, learning on their own, communication, timing/logistics, preferred information and timing of information delivery), and interactions with HHC providers (eg, positive/negative interactions, provider training and knowledge).; Conclusion: Caregivers were responsive to learning strategies to manage older adults' PF needs and, importantly, voiced ideas to improve family-focused training and support. HHC providers can use these findings to tailor training and support of family caregivers in the post-acute HHC setting. 

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Caregiver Needs Assessment in Primary Care: Views of Clinicians, Staff, Patients, and Caregivers

OBJECTIVES To understand current practices, challenges, and opportunities for a systematic assessment of family caregiversʼ needs and risks in primary care. DESIGN Qualitative study consisting of in‐depth semi‐structured interviews. SETTING Four primary care practices located in urban and rural settings. PARTICIPANTS Primary care clinicians, staff, and administrators (N = 30), as well as older adult patients and family caregivers (N = 40), recruited using purposive and maximum variation sampling. MEASUREMENTS Current experiences, challenges, and opportunities for integrating standardized caregiver assessment into primary care delivery. Interviews were audio‐recorded and transcribed; transcripts were analyzed using the constant comparative method of data analysis. RESULTS: Participating clinicians had been in practice for an average of 12.8 years (range = 1‐36 y). Patients had a mean age of 84.0 years (standard deviation [SD] = 9.7); caregivers had a mean age of 67.0 years (SD = 9.3). There was wide variability in current practices for identifying caregiversʼ needs and risks, encompassing direct and indirect approaches, when such issues are considered. Participants posited that integrating standardized caregiver assessment into primary care delivery could help improve patient care, enhance clinician‐caregiver communication, and validate caregiversʼ efforts. Barriers to assessment included insufficient time and reimbursement, liability concerns, lack of awareness of community resources, and concerns about patient autonomy. To facilitate future uptake of caregiver assessment, participants recommended brief self‐administered assessment tools and post‐screen discussions with practice staff. CONCLUSION: Identification of caregiversʼ needs and risks in primary care is highly variable. Integration of standardized caregiver assessment into practice requires coordinated changes to policy, revision of practice workflows, and an interdisciplinary approach to the development of appropriate assessment tools

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Canadians Who Care: Social Networks and Informal Caregiving Among Lesbian, Gay, and Bisexual Older Adults in the Canadian Longitudinal Study on Aging

Canada is experiencing population aging and evidence on the provision of care is based on data collected from majority populations. This analysis compared social networks and patterns of care provision between heterosexual and lesbian, gay, and bisexual (LGB) Canadians between the age of 45 and 85 years. Data were drawn from the Canadian Longitudinal Study on Aging (CLSA), a large national study of health and aging. The results from analysis of baseline data showed that LGB participants were less likely to have children and reported seeing their friends more recently than heterosexual participants. Gay and bisexual men were more likely to provide care support in comparison to heterosexual men. LGB participants were more likely to provide care to friends. The results highlight the importance of considering distinct social networks in the development of policy and practice approaches to support a diverse aging population. 

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Can in-hospital or post discharge caregiver involvement increase functional performance of older patients? A systematic review

Background: Regaining pre-hospitalization activity levels is only achieved in 30-50% of older patients. Extra physiotherapy time has been proven to improve functional outcome and shorten length of stay, but is costly. Considering their key role in caring for older people, involving informal caregivers in rehabilitation might further improve functional performance. Aim: To determine if in-hospital or post discharge caregiver involvement can increase functional performance in older adults. The secondary aim was to determine if caregiver involvement can influence, quality of life of patient and caregiver, medical costs, readmission rate, discharge location, and mortality. Design: Systematic review with narrative synthesis. Methods: The electronic bibliographic databases MEDLINE, Embase, CINAHL, Cochrane and Web of Science were searched for (quasi) experimental and observational studies, with the following inclusion criteria; caregiver involvement regarding functional performance, mean age over 65 years, admitted to a hospital unit and subsequently discharged to their home setting. Risk of bias was assessed with the Rob 2 (randomized trials) and the ROBINS-1 tool (non-randomized studies). Results: Eight studies of an initial 4683 were included: four randomized controlled trials, one prospective cohort study, one non-randomized controlled trial, one subgroup analysis of an RCT and one prospective pre-post study. All but one study included patients with stroke. Three types of caregiver interventions could be distinguished: a care pathway (inclusion of caregivers in the process of care), education on stroke and teaching of bed-side handling-skills, and caregiver-mediated exercises. The one study evaluating the care pathway reported 24.9% more returns home in the intervention group. Studies evaluating the effect of education and bed-side handling-skills reported higher effect sizes for several outcomes with increasing session frequency. All studies with caregiver-mediated exercises showed beneficial effects on functional performance, immediately after the intervention and within 3 months follow-up. Conclusion: The findings of this review suggest that involvement of caregivers in the rehabilitation of older adults leads to better functional performance up to 3 months after initiation. However, evidence is low and mainly focusing on stroke.

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Burden in Tunisian Family Caregivers of Older Patients with Schizophrenia Spectrum and Bipolar Disorders; Associations with Depression, Anxiety, Stress, and Quality of Life

There are very little data on the burden among caregivers of older adults with severe mental diseases. We aimed to assess the perceived burden among caregivers of family members with schizophrenia spectrum and bipolar disorders. A cross-sectional study was carried out with 52 older patients with schizophrenia spectrum and bipolar disorders and their family caregivers. Caregivers were assessed with the medical outcome survey short form (SF-36), the Zarit Burden Interview (ZBI) and the Depression Anxiety and Stress scales (DASS-21). Caregivers' mental quality of life was impaired with an average mental score of 59.05. For a threshold value of 17, the level of perceived burden was considered as high for 42.3% of caregivers. After controlling for demographic variables (age and gender) and patients' health-related variables (level of dependency, comorbidities, age onset of illness, number of hospitalizations and duration of clinical remission), caregivers' levels of depression, stress, and SF-36 physical component significantly contributed to their perceived burden. Certain modifiable risk factors play an inescapable role in increasing the level of burden among caregivers of older patients with serious mental illnesses. Improving the quality of life and psychological well-being of family caregivers should be considered an integral part of treatment for serious mental illness in older adult patients.

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Building Capacity for Caregiver Education in Yap, Micronesia

The US Affiliated Pacific Islands have an urgent need for family caregiver education to prevent caregiver burnout and strengthen the existing culture where seniors are cared for at home by their families. The Pacific Islands Geriatric Education Center conducted a 32-hour family caregiver train-the-trainer workshop in partnership with the Yap Department of Health Services and the Yap Area Health Education Center (AHEC) from October 16 - 20, 2017. Twenty-seven participants including community health workers, peer educators, health assistants, nurses, and physicians were trained as instructors. Confidence in caregiving increased following the training and feedback was extremely positive. Competence in geriatric syndromes was improved after attending the workshop (P < .001). Lessons from the field revealed an immense value of adding home visits to the training practicum as well as the need to translate caregiving handouts into the outer island languages. Yap AHEC is committed to offering this course as part of caregiver education at the hospital and in the community. 

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The association of collaboration between family caregivers and nurses in the hospital and their preparedness for caregiving at home

Family caregivers of an older person who was recently hospitalized often feel unprepared for their new or expanded tasks. Quality and continuity of care for older people is expected to improve when nurses collaborate with family caregivers as partners in care. The aim of this study was to explore the unique contribution of collaboration between family caregivers of older patients and hospital nurses as a possible predictor for preparedness of caregiving after hospital discharge. With a cross sectional design, a postal survey was sent to 777 family caregivers of home-dwelling hospitalized patients (≥70 years). Regression analyses were used to test the association between collaboration and preparedness for caregiving. In total, 506 (68%) family caregivers responded of whom 281 (38%) were eligible. Their mean (SD) age was 65 (13) and 71% were female. Family caregivers' level of collaboration with nurses was significantly associated with their preparedness for caregiving.

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Assessments for Caregivers of Hospitalized Older Adults

A systematic review was conducted to characterize assessments for caregivers of hospitalized older adults. Electronic literature searches of Medline, PsycINFO, and CINAHL of articles on caregiver assessments published in English between 2006 and present were completed. Thirty-three articles underwent full-text review; four included assessments designed to capture caregiver needs in hospital settings. Original articles on the development of these assessments were reviewed for quality appraisal. Four findings emerged from our review. Existing assessments (a) focus on caregivers of specific conditions of older adults, (b) contain a singular caregiving domain, (c) measure caregiver outcomes or simply describe caregiving experiences, and (d) neglect psychometric properties. Health care providers are limited in their selection of assessments with caregivers of hospitalized older adults. This barrier is problematic if we are to equip caregivers to be successful at providing care to older adults. Future research should develop a hospital assessment for caregivers. 

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Anxiety and depression in informal caregivers of dependent elderly people: an analytical study

Objective: To analyze the symptoms of anxiety and depression in informal caregivers of dependent elderly at home.; Methods: Analytical, cross-sectional study conducted in the city of Teresina (PI), with informal caregivers of dependent elderly people. Data collection took place from November 2017 to February 2018, using a characterization form for the dependent elderly and their caregiver, Beck's Anxiety Inventory (BAI) and Beck's Depression Inventory (BDI). The forward linear regression model was used to identify the predictive variables of anxiety and depression.; Results: It was found that 18.4% of caregivers had symptoms of depression; and 14%, moderate to severe anxiety. There was a correlation between anxiety and depression (p = 0.000).; Conclusion: The findings of this study make it possible to assess anxiety and depression in caregivers of dependent elderly people, making it possible, through these parameters, to view the profile and care demands of this population.

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Finding the Right Balance: An Evidence-Informed Guidance Document to Support the Re-Opening of Canadian Nursing Homes to Family Caregivers and Visitors during the Coronavirus Disease 2019 Pandemic

During the first few months of the coronavirus disease 2019 (COVID-19) pandemic, Canadian nursing homes implemented strict no-visitor policies to reduce the risk of introducing COVID-19 in these settings. There are now growing concerns that the risks associated with restricted access to family caregivers and visitors have started to outweigh the potential benefits associated with preventing COVID-19 infections. Many residents have sustained severe and potentially irreversible physical, functional, cognitive, and mental health declines. As Canada emerges from its first wave of the pandemic, nursing homes across the country have cautiously started to reopen these settings, yet there is broad criticism that emerging visitor policies are overly restrictive, inequitable, and potentially harmful. We reviewed the nursing home visitor policies for Canada's 10 provinces and 3 territories as well as international policies and reports on the topic to develop 10 provi-informed, data-driven, and expert-reviewed guidance for the re-opening of Canadian nursing homes to family caregivers and visitors. 

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Essential Family Caregivers in Long-Term Care During the COVID-19 Pandemic

Four decades ago, my parents were not permitted to hold their dying infant because they were “visitors” to the intensive care unit. I learned from them that our health care policies sometimes carry huge human costs. As a geriatrician and medical director of a long-term care (LTC) facility, I have learned that family members are not merely visitors; family members are critical partners in our care. The practice of social distancing and physical separation is important to keep our residents in LTC facilities safe in the COVID-19 pandemic, but the time has come to revise our policies allowing family presence at the bedside of loved ones....

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Meeting the Transitional Care Needs of Older Adults with COVID-19

Older adults with COVID-19 who survive hospitalizations and return to their homes confront substantial health challenges and an unpredictable future. While understanding of the unique needs of COVID-19 survivors is developing, components of the evidence-based Transitional Care Model provide a framework for taking a more immediate, holistic response to caring for these individuals as they moved back into the community. These components include: increasing screening, building trusting relationships, improving patient engagement, promoting collaboration across care teams, undertaking symptom management, increasing family caregiver care/education, coordinating health and social services, and improving care continuity. Evidence generated from rigorous testing of these components reveal the need for federal and state policy solutions to support the following: employment/redeployment of nurses, social workers, and community health workers; training and reimbursement of family caregivers; widespread access to research-based transitional care tools; and coordinated local efforts to address structural barriers to effective transitions. Immediate action on these policy options is necessary to more effectively address the complex issues facing these older adults and their family caregivers who are counting on our care system for essential support.

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A Hitchhiker's Guide to caring for an older person before and during coronavirus‐19

Coronavirus‐19 (COVID‐19) has reconfigured working lives with astonishing velocity. Older people have suffered the worst effects of the pandemic, with governments marginalizing or overlooking their needs. Women perform the majority of care for older people, often compromising their working lives and health. Yet in academic articles their voices are often filtered or aggregated in quantitative studies. Based on a weave of personal experiences and secondary research, the article traces a path through UK forms of care and shows how the inadequate response to COVID‐19 stemmed from existing policies embedded in health and social care. COVID‐19 has severed important informal care work, rendering the vulnerable yet more exposed and carers anxious and bereft. Longitudinal research capturing the trajectory of care from the perspective of older people and their carers would lead to improved support hence gender equality. 

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Amid the COVID-19 Pandemic, Meaningful Communication between Family Caregivers and Residents of Long-Term Care Facilities is Imperative

Older adults residing in long-term care facilities are especially vulnerable for severe illness or death from COVID-19. To contain the transmission of the virus in long-term care facilities, federal health officials have issued strict visitation guidelines, restricting most visits between residents and all visitors, including family members. Yet, many older adults rely on family care for social support and to maintain their health, well-being, and safety in long-term care facilities, and therefore need to stay connected to their families. The federal government, state and local leaders, and long-term care facilities should take further actions to enable the relationship between residents of long-term care facilities and families during the COVID-19 pandemic. 

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Abuse in the caregiving relationship between older people with memory disorders and family caregivers: A systematic review

Aim: To synthesize what is known about elder abuse and relationship factors associated with abuse between caregivers and older people with memory disorders at home. Background: Concerns about abuse in the caring relationship between older people with memory disorders and family caregivers have increased. Abuse is associated with negative outcomes on older people's health, quality of life, and zest for life. Abuse in the caring relationship manifests in financial exploitation, neglect, mistreatment, and physical issues. Design: Systematic review. Data sources: Databases including Scopus, PubMed/Medline, SveMed+, Cinalh, SonINDEX, and ProQuest were searched using keywords about abuse in the caring relationship between older people with memory disorders and family caregivers at home. Articles published between 2005-2019 were retrieved and underwent data analysis and knowledge synthesis. Review methods: The review was presented under the categories of the dyadic approach of elder abuse in connection with the role of caregiver (risk) and care recipient (vulnerability) by Fulmer et al. (2005). Results: The search process led to 12 quantitative studies, including an intervention, a prospective, nine surveys, and a cross-sectional structural interview. Findings were synthesized and presented under 'personal', 'physical and psychological', and 'social' domains indicating the bilateral roles of caregiver and care recipient leading to abuse. Conclusion: This review depicted factors influencing abuse in the caring relationship between older people with memory disorders and their family caregivers at home. They included family caregivers' psychological issues, knowledge of memory disorders and modifications, previous caring relationship, social support, number of care recipients, and care recipients' functional level. Impact: • This review identifies what influences elder abuse by family caregivers using the dyadic approach and explains how abuse can be prevented through suggested strategies. • The review findings are relevant to multidisciplinary healthcare providers and can guide the provision of support, screening and assessment, educational programs, and legislative initiatives. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Highlights

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

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

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

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

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

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

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

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Challenges Faced by Family Caregivers: Multiple Perspectives on Eldercare

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

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

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

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

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

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

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

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

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

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