Easing caregiver strain: The power of health check-ups.

Against the backdrop of global aging and escalating pressures on family caregiving, this study delves into the impact of health check-ups for the elderly on alleviating the objective burden of family caregiving by analyzing China's Free Health Check-up Program (FHCP). Using an unbalanced panel dataset spanning 2011, 2013, 2015, 2018, and 2020, comprising approximately 35,000 observations of the elderly population aged 65 and above, the research employs the Difference-in-Differences method. The research reveals a significant 9.18% reduction in family caregiving time following the implementation of FHCP, primarily attributed to the enhancement of the elderly's self-care abilities and health awareness. This study elucidates, for the first time, the efficacy and mechanisms of health check-ups in alleviating caregiving objective burdens, providing evidence for the formulation of pertinent policies. It underscores the significance of routine health check-ups as a public health intervention in supporting family caregivers and addressing the challenges of aging.

The impact of internet connectivity when conducting a virtual clinical trial with participants living in rural areas.

Aim: The purpose of this secondary analysis was to describe issues related to internet connections during a virtual randomized clinical trial (v-RCT) that included family caregiver participants living in rural areas. Background: Success of v-RCTs depends on reliable, high-quality internet access, which can be problematic in rural areas. Methods: Interventionists documented connectivity issues and corrections made to address connectivity in a narrative note after each virtual visit with family caregivers enrolled in a v-RCT. Notes were reviewed for descriptions of the internet connection during the visit and then coded into those with and without connectivity problems. Two investigators reviewed notes and codes to assure reliability. Discrepancies in codes were discussed or arbitrated by a third investigator until consensus was reached. Analysis was completed using descriptive statistics. Results: Of the 1003 visits reviewed, only 11 % of visits (115/1003) contained a documented problem with internet connectivity. Visits with documented connectivity problems were experienced by 27 % of participants (58/215). However, 60 % (35/58) of participants with a documented issue had a problem with only one visit. None of the participants withdrew from the v-RCT due to problems with their internet connections. Conclusions: The findings support the effective use of virtual visits in research involving participants living in rural locations. V-RCTs provide a strategy that enables participation for individuals who may not otherwise have access to clinical trials conducted in-person in urban settings. Utilizing internet access to connect with and support people who live in rural areas is critically needed to advance clinical research.

Qualitative Exploration of the "Guilt Gap" Among Physician-Faculty with Caregiving Responsibilities.

Introduction: Differences in time commitments and resources contribute to the difficulties of work-life integration for many physician-scientists, particularly for women with family caregiving responsibilities. Understanding the challenges faced by this population is critical for the retention of these critical members of the workforce. Methods: We conducted semi-structured telephone interviews with recipients of the 2017 Doris Duke Charitable Foundation's Fund to Retain Clinical Scientists (FRCS) and reviewed application narratives from the 2020 award recipients. Award recipients were asked about their caregiving responsibilities and careers, particularly as they related to the impact of the FRCS award and the aftereffects of the COVID-19 pandemic. Analysts then iteratively revised the coding scheme and interpreted the data using qualitative thematic analysis. Results: Of the 14 interviewees and 19 narrative contributors, 25 (76%) were women. The main qualitative themes that emerged were as follows: (1) women experience unrealistically high caregiving burdens, (2) women are overburdened by disadvantageous and undervalued expectations at work, (3) work-life expectations increased during the COVID-19 pandemic, and (4) unrealistic work-life expectations led to guilt and burnout. Conclusions: These findings provide a rich understanding of the factors contributing to guilt and burnout among physician-scientists, particularly women, and how work duties that increase physician obligations exacerbated these challenges. Understanding these experiences is critical to supporting and retaining a diverse workforce in academic medicine.

Second Partnership and Dementia Care in a Blended Family: Case Study of a Wicked Problem.

Dementia care research has largely ignored the challenges that may emerge from couple and family dynamics, especially about second partnerships in blended families. This paper details the case of a 79-year-old man, Hannes, in his second partnership who tried to handle the complexities of his wife's dementia care as her children and healthcare providers discounted his role as husband and decision maker. He faced difficult communications with family members and challenges to his role as decision maker by healthcare providers and legal system professionals. This man's story is explored through multiple interviews and document analyses from 2020 to 2023. This case study uses the concept of the "wicked problem" to frame the potential complexities of dementia care when blended families are involved in decision making. This framework allows us to consider the many facets of family dementia care and how improvements could be made to facilitate role transitions and family decision making.

Caregiving-Related Characteristics and Dental Care Utilization in Informal Caregivers of Persons With Dementia: Is There a Gender Difference?

BACKGROUND AND OBJECTIVES: Dental care utilization is an important, yet understudied aspect of healthcare in informal caregivers of persons with dementia. This study examined how caregiving-related characteristics are associated with dental care utilization among U.S. informal caregivers of persons with dementia and further examined gender differences. RESEARCH DESIGN AND METHODS: Pooled data came from the Behavioral Risk Factor Surveillance System in 2016, 2018, 2020, and 2022. A nationally representative sample of informal caregivers (n = 3,909) was included. Dental care utilization was "yes" versus "no" within the past year. Caregiving-related characteristics included caregiver role, intensity of care, duration of care, and type of care. Logistic regressions and subgroup analyses were conducted. RESULTS: In total sample, compared to adult child caregivers, spousal caregivers were 28% less likely to visit a dentist (odds ratio [OR] = 0.72; 95% confidence interval [CI] = 0.56, 0.94). Caregivers who provided care for more than 20 hr per week were 18% less likely to visit a dentist (OR = 0.82; 95% CI = 0.69, 0.98). In subgroup analyses, intensity of care was a barrier to dental care utilization for female caregivers (OR = 0.78; 95% CI = 0.62, 0.98), whereas caregiver role such as spousal caregiver (OR = 0.59; 95% CI = 0.39, 0.89) or other relative caregiver (OR = 0.70; 95% CI = 0.50, 0.99) was a barrier to dental care utilization for male caregivers. DISCUSSION AND IMPLICATIONS: The findings highlight the importance of caregiving-related characteristics in dental care utilization and suggest gender-tailored interventions.

Characteristics of Informal Caregivers and Social Participation of People With Dementia.

BACKGROUND AND OBJECTIVES: Social participation is associated with increased quality of life and well-being but declines following the onset of dementia. Informal caregivers may facilitate social participation among people with dementia. This study aims to identify characteristics of informal caregivers associated with social participation of people with dementia in valued activities. RESEARCH DESIGN AND METHODS: This cross-sectional study used data from the 2011, 2015, and 2017 National Health and Aging Trends Study (NHATS) and the National Study of Caregiving. NHATS respondents with possible or probable dementia and an informal caregiver were included (N = 1,060). Respondents were asked whether they participated in each of 5 social activities during the past month. Valued activities were considered somewhat or very important. Survey-weighted logistic regression models were computed to identify characteristics of primary informal caregivers associated with participation of people with dementia in social activities. RESULTS: Social participation of people with dementia was not independently associated with sociodemographic variables or relationship to the primary caregiver (spouse/partner, adult child, or other relative/nonrelative). Social participation of primary caregivers was associated with increased participation of people with dementia in the same activity for visiting friends/family (odds ratio [OR] = 1.88, p = .016), attending religious services (OR = 4.82, p < .001), and volunteering (OR = 3.25, p = .015), whereas greater caregiver external support was associated with increased participation of people with dementia in organized activities (OR = 1.37, p = .022). DISCUSSION AND IMPLICATIONS: Assets of informal primary caregivers found to promote social participation of people with dementia include traveling to the person with dementia's home, being socially active themselves, and utilizing support services.

Transitional Palliative Care for Family Caregivers: Outcomes From a Randomized Controlled Trial.

CONTEXT: Patients receiving inpatient palliative care often face physical and psychological uncertainties during transitions out of the hospital. Family caregivers often take on responsibilities to ensure patient safety, quality of care, and extend palliative care principles, but often without support or training, potentially compromising their health and well-being. OBJECTIVES: This study tested an eight-week intervention using video visits between palliative care nurse interventionists and caregivers to assess changes in caregiver outcomes and patient quality of life. METHODS: This randomized controlled trial, conducted from 2018 to 2022, enrolled adult caregivers in rural or medically underserved areas in Minnesota, Wisconsin, and Iowa. Eligible caregivers included those caring for patients who received inpatient palliative care and transitioned out of the hospital. The intervention group received teaching, guidance, and counseling from a palliative care nurse before and for eight weeks after hospital discharge. The control group received monthly phone calls but no intervention. Caregiver outcomes included changes in depression, burden, and quality of life, and patient quality of life, as reported by the caregiver. RESULTS: Of those consented, 183 completed the intervention, and 184 completed the control arm; 158 participants had complete baseline and eight-week data. In unadjusted analyses, the intervention group and their care recipients showed statistically significant improvements in quality of life compared to the control group. Improvements persisted in adjusted analyses, and depression significantly improved. No differences in caregiver burden were observed. CONCLUSION: Addressing rural caregivers' needs during transitions in care can enhance caregiver outcomes and improve patient quality of life.

Unveiling the dynamics of older person care: a qualitative exploration of the intersection between formal and Informal Caregiving from the perspectives of registered nurses in Greece.

In the evolving landscape of older person care, the imperative to explore holistic approaches persists, especially in regions with distinct societal norms around informal caregiving. The deeply ingrained tradition of familial caregiving, often led by female family members, has historically compensated for healthcare system gaps in less integrated systems. Hence, societal expectations may affect registered nurses' experiences and impact the quality of care for older persons. This study aims to describe the meaning of caring for older persons in care settings in Greece. Ten in-depth interviews with registered nurses in older person care settings underwent qualitative thematic analysis. Four themes emerged from the analysis: (i) Living and bonding with older people as a basis for caring, (ii) Caring as a double-faced fulfillment, (iii) A sense of insufficiency in the caring relationship, and (iv) The encounter of existential issues creating loneliness. This research provides insights into the meaning of caring for older persons, highlighting the experiences of the closest professional caregivers of older individuals. A specific capture of the entanglement of cultural norms, societal expectations, and their impact on professional caregivers' experiences may contribute to quality care provision in systems rooted in familial caregiving traditions.

Economic Value of Unpaid Family Caregiver Time Following Hospital Discharge and at End of Life.

CONTEXT: Family caregivers (FCGs) play a crucial role in care for people with serious illness, yet unpaid care is often overlooked in estimates of care recipient (CR) care costs. OBJECTIVES: This study quantifies the economic value of unpaid caregiving by FCGs between hospital discharge and end of life. METHODS: Trial participants were rural FCGs of CRs receiving palliative care during hospitalization. Caregiving hours were self-reported by FCGs over six months following hospital discharge. Economic value was assigned to hours based on wage data from the United States Bureau of Labor Statistics. Time was valued using 1) home health aide wages (proxy cost), 2) median national wage by FCG sex and education level (opportunity cost), 3) opportunity cost if employed and proxy cost otherwise (combination cost). RESULTS: Of 282 FCGs, 94% were non-Hispanic White, 71% were female, 71% had a college degree, and 51% were in the workforce. FCGs of decedents (58%) compared to survivors reported significantly more caregiving hours per person-month (392 vs. 272), resulting in higher estimated economic value per person-month using opportunity ($12,653 vs. $8843), proxy ($5689 vs. $3955), and combined costing methods ($9490 vs. $6443) CONCLUSION: This study informs more complete economic evaluations of palliative care by estimating the economic value of unpaid caregiving. The high intensity of unpaid caregiving for people with serious illness, especially toward the end of life, should be considered when designing policies and interventions to support FCGs. Better methods for approximating economic value are needed to address potential inequities in current valuation approaches.

Implications of Rebalancing Home-Based Care for Family Caregivers to Older Adults.

Over the last several decades, Medicaid has been "rebalancing" services from institutions to the community, increasing support of home- and community-based services (HCBS). These services could potentially substitute for care typically provided by family members, replacing or reducing care from kin. Leveraging one of the most recent Medicaid rebalancing programs, the Balancing Incentive Program (BIP), and using data from the 2008-2016 Health and Retirement Study on 953 Medicaid beneficiaries ages 65 and over with at least one functional limitation, we examined the relationship between exposure to BIP and family and professional caregiving. BIP exposure was not associated with receipt of care or total hours of care. It was, however, associated with more hours of professional care and fewer hours of family care from non-spouse kin. These findings suggest that recent Medicaid rebalancing programs, while intended to meet the desires of older adults, could have implications for their families.

Differential Effects of an Integrated Community-Based End-Of-Life Support Team (ICEST) Model for Terminally Ill Older Adults on Spousal and Adult-Children Caregivers.

Backgrounds: Family caregivers (FCs) play an essential role in delivering home-based end-of-life care. However, little is known about FCs'' experiences when undertaking this role. The integrated community end-of-life support team (ICEST) is a needs-driven, home-based, family-centered care model in Hong Kong. We evaluated its effects on FCs and compared outcomes for spouses and adult children. Method: A multicenter pre-post-test study was conducted. Eligible participants were primary FCs of terminally ill older adults (age ≥ 60) who had a life expectancy of ≤12 months. Baseline (T0) and three-month post-intervention (T1) outcome measures included FCs'' caregiving strain, psychological distress, perceived external support, intimate relationships, and communications regarding care planning. Results: A sample of 628 FCs were enrolled at T0, and 40.0% completed the T1 assessments. The ICEST model was effective in reducing caregiving strain, depression, and worries about patients, whilst there were improvements in agreement about care planning with patients, and perceived external supports. At T0, spouses held more negative perceptions of caregiving and faced fewer adjustment demands than adult children. Compared with spouses, adult children were more intimate with patients. Between T0 and T1, spouses experienced a greater reduction in worries about patients, than adult children. Conclusions: The ICEST model contributed to better outcomes, individually and relationally, for FCs, regardless of relationship type. Spouses and adult children faced different challenges while delivering home-based end-of-life care. Effective interventions should modify the negative perceptions of caregiving in spousal caregivers and enable adult children to deal with multiple tasks and complex expectations.

'Someone must do it': multiple views on family's role in end-of-life care - an international qualitative study.

Background: Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men. Objectives: This study explored multiple views on the family's role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers' points of view. Design: This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites. Methods: Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger-Davidhizar-Haff's model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers' field notes, were translated into English for international collaborative analysis. Results: We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families' active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care. Conclusion: Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved.

Family Involvement in the Care of Nursing Home Residents With Dementia: A Scoping Review.

Family members are involved in the lives of older adults with dementia in complex ways. This scoping review synthesizes existing research on family involvement in the care of nursing home residents with advanced dementia. Using the Arksey and O'Malley scoping review framework, electronic searches of PubMed, EBSCO's CINAHL Complete, and APA PsychInfo on the Ovid platform were conducted. Twenty-eight studies met inclusion criteria. Emergent themes and definitions of involvement were obtained through thematic analysis, including: (1) contact (through visitation, calling, or writing letters); (2) engagement in care activities (instrumental/activities of daily living); (3) planning and monitoring care (being aware of health and treatment changes, partnership with care staff, ensuring adequate care, and decision-making); and (4) supporting the resident (advocacy, socioemotional support, and financial support). Moreover, limited psychometrically sound instruments exist to measure family involvement. These limitations stall the progression of research targeting family involvement.

mHealth based intervention by social care professionals to support family caregivers to persons with dementia living at home in Sweden (Caregiver Connect): a randomized controlled trial.

BACKGROUND: The majority of persons with dementia in Sweden reside in their own homes with support from family members. Approximately, 12% of persons with dementia have immigrant background. Within the next 20 years, the number of persons with dementia who are non-ethnic Swedes is said to double. Family caregivers with immigrant backgrounds are noted to receive less support in the community than ethnic Swedes and rate their health status lower than ethnic Swedish peers. The Swedish National Board of Health and Welfare have highlighted the importance of follow-up support for family caregivers with immigrant backgrounds as there is a recognized gap in research and available information tailored to meet the needs of this group. PURPOSE OF THE STUDY: The purpose of the study is to test effectiveness of an mHealth based intervention through which community social workers can improve caregiving competence of non-European immigrant family caregivers of people with dementia living at home in Sweden. The overarching aim is to reduce caregiver burden and depressive symptoms, and improve quality of life. METHODS: A randomized controlled trial (RCT) including wait list control group will be performed consisting of an intervention group (A, n = 44) and a wait list control group (B, n = 44), totaling a sample size of 88. On completion of the 10-weeks long intervention in the intervention group, the intervention will be delivered to group B. Effect of the intervention will be analyzed between and within groups over time. The content of the educational component of the intervention is inspired by the iSupport manual developed by the World Health Organization. The contents, in the form of a booklet, aims to equip the family caregivers with structured information on understanding dementia as a condition and its management at home, including self-care guidance designed specifically for family caregivers themselves. DISCUSSION: Similar telephone-delivered intervention studies targeted for family caregivers to persons with dementia are ongoing in Malaysia and will start in India using the same booklet adapted to the local context. These studies will provide evidence on the effectiveness of using digital technologies to deliver support to those who may not be reached or adequately served by the traditional healthcare system. TRIAL REGISTRATION: ISRCTN registry, Registration number ISRCTN64235563.

Using Clustering Methods to Map the Experience Profiles of Dementia Caregivers.

Background and Objectives: Caregivers of persons living with dementia report wide-ranging lived experiences, including feelings of burden and frustration but also positivity about caregiving. This study applies clustering methodology to novel survey data to explore variation in caregiving experience profiles, which could then be used to design and target caregiver interventions aimed at improving caregiver well-being. Research Design and Methods: The k-means clustering algorithm partitioned a sample of 81 caregivers from the Midwest region of the United States on the basis of 8 variables capturing caregiver emotions, attitudes, knowledge, and network perceptions (adversity: burden, anxiety, network malfeasance; network nonfeasance; positivity: positive aspects of caregiving, preparedness and confidence in community-based care, knowledge about community services for older adults, and network uplift). The experience profile of each segment is described qualitatively and then regression methods were used to examine the association between (a) experience profiles and caregiver demographic characteristics and (b) experience profiles and study attrition. Results: The clustering algorithm identified 4 segments of caregivers with distinct experience profiles: Thriving (low adversity, high positivity); Struggling with Network (high network malfeasance); Intensely Struggling (high adversity, low positivity); Detached (unprepared, disconnected, but not anxious). Experience profiles were associated with significantly different demographic profiles and attrition rates. Discussion and Implications: How caregivers respond to support interventions may be contingent on caregivers' experience profile. Research and practice should focus on identifying public health strategies tailored to fit caregiver experiences. Clinical Trial Registration: NCT03932812.

Positive Aspects of Caregiving in Familial Care for Nonagenarians and Centenarians: Findings from Hong Kong Centenarian Study.

Caregiving for the fast-growing but vulnerable oldest-old population may involve distinct challenges but also gratification. We analyzed quantitative and qualitative data from family caregivers of community-dwelling older adults aged 95 or above in Hong Kong. Quantitative analysis of 143 caregivers revealed that higher age, dependence on basic activities of daily living, independence on instrumental activities of daily living, and intact hearing ability of the older adults, and absence of a domestic helper and better self-rated health of the caregivers were associated with more positive aspects of caregiving. Qualitative analysis of the 96 caregivers who mentioned at least a positive aspect from their caregiving identified three themes: acquiring caregiving skills, fulfilling family love and obligation, and preparing for graceful aging. Our findings elaborated the nature and mechanism of caregiving gains against the unique backdrop of exceptional longevity and the Chinese cultural expectations of filial piety.

A randomised controlled trial of the Learning Skills Together (LST) intervention to improve dementia family caregivers' self-efficacy with complex care.

BACKGROUND: Nearly two-thirds of family caregivers of persons living with Alzheimer's disease or related dementias (AD/ADRD) provide complex care, including medical care. Family caregivers typically receive little to no training on how to provide this care. Furthermore, family caregivers simultaneously grapple with the presence of behavioral and psychological symptoms of dementia (BPSD), diminished communication abilities, and comorbidities such as diabetes. We developed Learning Skills Together (LST), a 6-week digitally delivered psychoeducational program, to facilitate family caregiver abilities to administer complex care tasks. The goal of the present study is to test the efficacy of LST and to reduce adverse outcomes associated with caregiving, such as depressive symptomology and negative appraisal of BPSD. METHODS: To test the efficacy of LST, we will conduct a two-arm single-site randomized controlled trial (RCT) with N = 200 family caregivers of persons living with AD/ADRD. Eligible family caregivers will be randomly assigned to participate in either the LST intervention or a structurally equivalent control condition focused on healthy living. All family caregivers will complete four surveys, including a baseline survey administered prior to randomization, a post-intervention survey, and a 3- and 6-month follow-up survey to assess change in study outcomes. Between-group comparisons of each outcome will be evaluated using generalized estimating equation models. Mediation analyses will assess family caregiver self-efficacy as the intervention's mechanism of change in depressive symptomology and BPSD. We will also examine caregiver race, ethnicity, and gender as effect modifiers of the intervention. DISCUSSION: LST findings will inform the field of AD/ADRD and caregiving regarding optimally supporting family caregivers in managing complex care tasks. If efficacious, the LST intervention will support family caregivers in preserving their own mental health while providing complex care. TRIAL REGISTRATION: Clinical Trials.gov NCT05846984 . This study was registered on May 6, 2023.

A Scoping Review to Contribute to Knowledge About Culturally Adapting Interventions for Latino Family Caregivers of Persons Living With Dementia.

INTRODUCTION: Few interventions have focused on Latino family caregivers to persons with dementia, addressing their unique needs. This review aimed to identify best practices in cultural adaptation to make recommendations for adapting interventions for Latino family caregivers of persons living with dementia. METHOD: This scoping review was conducted following the Joanna Briggs Institute Scoping Review guidelines, with findings extracted and summarized from 17 studies addressing cultural adaptation. RESULTS: Frameworks guiding the adaptations were comprehensive, addressing cultural values and traditions and the social context faced by Latino family caregivers. Features of the adaptations included diverse teams of researchers and community members, including Latino family caregivers, to inform the integration of cultural values into the content, mode, and place of intervention delivery. DISCUSSION: Culturally adapting evidence-based interventions will increase the number of available interventions for Latino family caregivers to persons living with dementia, thus reducing inequities in caregiver support.

Gratitude Predicts Meaning in Life in Family Caregivers of Persons with Alzheimer's Disease.

Gratitude is a well-known and researched internal positive psychological resource. Empirical data, however, on the association between gratitude, meaning in life, and burden in family caregivers of persons with Alzheimer's disease is scant. The aims of this study were to (1) investigate the relationships among these variables in a sample of family caregivers of persons with Alzheimer's; and (2) determine if gratitude mediates the effects of perceived burden on meaning in life in this population. One-hundred and twenty-six adult family caregivers, most of whom were an intimate partner or adult child of a person with Alzheimer's, completed the Gratitude Questionnaire-Six Item, the Meaning in Life Questionnaire, the Zarit Burden Inventory, and other relevant measures. A series of OLS regression models, guided by the caregiver stress process model, were conducted. These analyses demonstrated that gratitude was a predictor of the presence of meaning in life among the caregivers in this study even when other key variables were considered. Furthermore, analyses revealed that gratitude fully mediated the effects of caregiver burden on the presence of meaning in life in this sample. Thus, clinicians should consider gratitude as an important internal resource for cultivating meaning in life in this population, especially when caregiver burden is present. Gratitude-bolstering clinical interventions should be further developed and tested as both stand-alone and complimentary additions to empirically supported psychoeducational approaches for supporting health and well-being in this population.