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Family quality of life (FQOL) is a multidimensional social construct that can be used to enhance a family's well‐being by providing a framework to plan interventions and evaluate outcomes. Although researchers and policymakers see value in the FQOL domains and dimensions, families and practitioners are often skeptical of lengthy evaluations and aggregate scores. Furthermore, many practitioners find that family caregivers who require support and services overwhelmingly focus on the family member needing the most care. In doing so, they perceive their situations in a "spaghetti‐like" way. This strong focus on one aspect of the situation, or one "spaghetti" strand, can result in conversations about planning and implementing interventions becoming cyclical, like a messy tangle of strands. The FQOL lens can be used in intervention planning to transform overlapping spaghetti‐like thoughts into a waffle‐like system of interconnected and compartmentalized thoughts. The purpose of this paper was to describe the individual‐level application of the FQOL theory to plan and evaluate the benefits of a peer‐mediated family empowerment project for aging caregivers of adults with intellectual/ developmental disabilities in Michigan, USA. The study provides examples of how individual‐level FQOL evaluation at pretest informed the development of individualized action plans that focused on the strengths, desires, and challenges of 100 aging families in this statewide project. [ABSTRACT FROM AUTHOR]

Objectives To prioritize research topics relevant to the care of the growing population of older adults with multiple chronic conditions ( MCCs). Design Survey of experts in MCC practice, research, and policy. Topics were derived from white papers, funding announcements, or funded research projects relating to older adults with MCCs. Setting Survey conducted through the Health Care Systems Research Network ( HCSRN) and Claude D. Pepper Older Americans Independence Centers ( OAICs) Advancing Geriatrics Infrastructure and Network Growth Initiative, a joint endeavor of the HCSRN and OAICs. Participants Individuals affiliated with the HCSRN or OAICs and national MCC experts, including individuals affiliated with funding agencies having MCC-related grant portfolios. Measurements A 'top box' methodology was used, counting the number of respondents selecting the top response on a 5-point Likert scale and dividing by the total number of responses to calculate a top box percentage for each of 37 topics. Results The highest-ranked research topics relevant to the health and healthcare of older adults with MCCs were health-related quality of life in older adults with MCCs; development of assessment tools (to assess, e.g., symptom burden, quality of life, function); interactions between medications, disease processes, and health outcomes; disability; implementation of novel (and scalable) models of care; association between clusters of chronic conditions and clinical, financial, and social outcomes; role of caregivers; symptom burden; shared decision-making to enhance care planning; and tools to improve clinical decision-making. Conclusion Study findings serve to inform the development of a comprehensive research agenda to address the challenges relating to the care of this 'high-need, high-cost' population and the healthcare delivery systems responsible for serving it. [ABSTRACT FROM AUTHOR]

This study examines caregiver networks, including size, composition, and stability, and their associations with the likelihood of hospitalization and skilled-nursing facility (SNF) admissions. Data from the National Health and Aging Trends Study linked to Center for Medicare and Medicaid Services data were analyzed for 3855 older adults across five survey waves. Generalized estimating equation models assessed the associations. The findings indicate each additional paid caregiver was associated with higher adjusted risk ratios (aRR) for hospitalization (aRR = 1.24, 95% CI 1.10–1.41) and SNF admission (aRR = 1.28, 95% CI 1.06–1.54) among care recipients, a pattern that is also observed with the addition of unpaid caregivers (hospitalization: aRR = 1.13, 95% CI 1.06–1.20; SNF: aRR = 1.12, 95% CI 1.02–1.23). These results suggest that policies and approaches to enhance the quality and coordination of caregivers may be warranted to support improved outcomes for care recipients. [ABSTRACT FROM AUTHOR]

The need to better understand the nature of work related to unpaid caregiving to older persons and its effect on the caregivers has become a pressing issue given the worldwide trend toward population aging. This study focuses on those who frequently provide this type of unpaid care in the US. Using pooled 2011–19 American Time Use Survey data for individuals aged 25–61-years old and a correlated system of regressions, we examine the gendered time allocation pattern of those who frequently provide care to older persons. We find that female caregivers spend less time on market work compared to male caregivers. Our results also suggest that frequent caregiving is associated with more time spent on domestic and care work and less time on market work and self-care. On days when they don't perform or just do little care work, frequent caregivers tend to spend long hours performing market work and reduce their time on domestic chores, care work, and leisure. Sensitivity checks confirm these findings. [ABSTRACT FROM AUTHOR]

This paper provides a template for the decade ahead regarding the delivery, supply, and funding of caregiver respite services. Policy changes are needed to address these issues as concerns about our country's ability to meet future caregiving needs are growing along with our aging population. Federal initiatives and state-level policies and programs affecting respite are reviewed and directions for policy advancement are highlighted. Much more work is needed to educate caregivers and the general public about the necessity for respite beginning early in the caregiving career to prevent burnout and other adverse effects. Because it is unlikely that there will be a sufficient number of direct-care workers to replace unpaid caregivers, improved policies are needed to ensure that their situation is sustainable through increased availability of high-quality respite and other services vital to caregiver health and well-being. Among the 2015White House Conference on Aging's priorities in the next decade, policies on long-term services and supports will require focused attention on family caregivers and the direct-care workforce to strengthen their ability to give care now and support their own physical, emotional, and financial needs in the future. [ABSTRACT FROM AUTHOR]

Family care provision is the norm for adults with intellectual and developmental disabilities (I/DD), even as they and their support networks grow older. As families age together, the role of primary carer frequently transitions from the parent to a sibling, as aging parents die or become too frail to provide continued support. The purpose of this paper is to explore the transition in care from the perspective of a sibling who has replaced parents as the primary carer for an individual aging with I/DD. Data are drawn from semi-structured, in-depth interviews with a sample of adults over age 40, living in the United States, and caring for a sibling with I/DD (n = 15). Data were analyzed using a constant comparative qualitative approach. Results reveal themes impacting the adjustment to the role of primary carer, the extent to which aging transformed the content of care needs, the importance of planning, and the availability of supplementary support. Findings from this study underscore the need to develop long-term services and supports as well as educational resources that accommodate this population of carers as they age together with their sibling with I/DD. [ABSTRACT FROM AUTHOR]

In the United States, aging in place is a common concept that refers to older adults' desire to remain in their homes as they age. However, this ability to age in place is a complex process that is not only impacted by the home's accessibility or individual functional abilities. This paper aims to examine different factors, such as home environment and home modification, caregivers, finances, and other supports present in the participants' lives, that impact older adults with age-related cognitive changes (ARCC) (in)ability to age in place. Qualitative interviews with older adults with ARCC (n = 5) and their caregivers (n = 5) were conducted. The participants' experiences while aging in place indicate that finances and caregiving support greatly impacted their lives at home and ability to age in place. Personal finances dictated where some of the participants could age and the support, they could afford from home health aides. Additionally, informal and formal caregivers were an important source of support that aided in the older adults' ability to remain home. As researchers, we need to continue to address personal finances and the support that the individual has in their lives to most effectively promote aging in place and their life at home. [ABSTRACT FROM AUTHOR]

Objectives: To examine the need for and arrangements pertaining to personal care assistance among individuals 65 and older, and how life stage at migration impacts nativity differences in aging-related care. Methods: Using data from the Survey of Income and Program Participation (2001, 2004, and 2008), I examine the odds of needing care assistance, who provides care assistance, and the duration of time care assistance is needed, comparing U.S.-born individuals to migrants who arrived before age 50 ("earlier-life migrants") and those who arrived after age 50 ("later-life migrants"). Results: While earlier-life migrants showed similar patterns to U.S.-born, later-life migrants showed higher care needs, were more likely to receive care from an adult child, and were particularly likely to need care for longer durations compared to U.S.-born. Discussion: Aging later-life migrants have strikingly distinct care needs and arrangements, with implications for individual and family well-being, especially considering their barriers to public support. [ABSTRACT FROM AUTHOR]

Heavy demands upon dementia caregivers can lead to a number of poor health outcomes including declines in physical, mental, and brain health. Although dementia affects people from all backgrounds, research in the US has largely focused on European American caregivers. This has made providing culturally-competent care more difficult. This study begins to address this issue by empirically examining how culturally-shaped beliefs can influence loneliness in family caregivers of people with dementia. We conducted a preliminary questionnaire study with Chinese American and European American family caregivers of people with dementia (N = 72). Chinese American caregivers were more concerned than European American caregivers about losing face, which in turn, was associated with greater loneliness. This pattern remained when accounting for caregiver gender, age, and relationship to the person with dementia. These preliminary findings highlight the role that cultural beliefs can play in adverse caregiver outcomes, and suggest that addressing concerns about losing face may be an important way for healthcare providers to help reduce loneliness among Chinese American caregivers. Understanding how cultural beliefs influence caregiver outcomes is critical as healthcare professionals work to provide culturally-competent care and design culturally-sensitive interventions. [ABSTRACT FROM AUTHOR]

Background: Many U.S. caregivers provide care to the generation above and below simultaneously, described as “sandwich” generation caregivers. We seek to provide the first national estimates characterizing sandwich generation caregivers and the older adults for whom they care. Methods: We used the 2015 National Study of Caregiving (NSOC) and National Health and Aging Trends Study (NHATS) to compare individual (demographic, socio-economic, health, and caregiving characteristics) and caregiving-related experience (financial and emotional difficulties, caregiver role overload and gains, supportive services, employment and participation restrictions) between sandwich and non-sandwich generation caregivers. The analysis included adult child caregivers with or without any minor child under 18 years (n = 194 and 912 NSOC respondents, respectively) providing care to n = 436 and 1217 older adult NHATS respondents. Results: Of all adult child caregivers, 24.3% also cared for a minor child (i.e., sandwich generation caregivers), representing 2.5 million individuals. Sandwich generation caregivers provided similar care hours to older care recipients as non-sandwich caregivers (77.4 vs. 71.6 h a month, p = 0.60), though more of them worked for pay (69.4% vs. 53.9%, p = 0.002). Both sandwich generation caregivers (21.0% vs. 11.1%, p = 0.005) and their care recipients (30.1% vs. 20.9%, p = 0.006) were more likely to be Medicaid enrollees than their non-sandwich caregiving counterparts. More sandwich generation caregivers reported substantial financial (23.5% vs. 12.2%, p < 0.001) and emotional difficulties (44.1% vs. 32.2%, p = 0.02) than non-sandwich caregivers; they also reported higher caregiver role overload (score: 2.9 vs. 2.4, p = 0.04). Their supportive services use was similarly low as non-sandwich caregivers except for seeking financial help (24.8% vs. 14.7%, p = 0.008). Conclusions: Besides caring for minor child(ren), sandwich generation caregivers provided similarly intense care to care recipients as nonsandwich caregivers and had higher labor force participation; they experienced more caregiving-related financial and emotional difficulties and role overload. Policymakers may consider supportive services that address their unique needs and roles. [ABSTRACT FROM AUTHOR]

Perceptions of oncology health care providers use of telehealth to provide care to patients during the COVID-19 pandemic were explored. A qualitative study using semi-structured interviews and purposive sampling (N = 30) was conducted. Four themes emerged: 1) telehealth provided continuity of cancer care and used to decrease the risk of COVID-19 exposure; 2) advantages brought about convenience and inclusion of family caregivers; 3) telehealth revealed geographic, aging, and racial/ethnic disparities and digital illiteracy; and 4) rapid implementation was challenging. Telehealth provides a number of opportunities to support care for vulnerable cancer patients during this health crisis; however, disparities must be addressed. [ABSTRACT FROM AUTHOR]

The objective of this study was gather pilot data from informal caregivers regarding the potential for a training program to assist current or past caregivers in reentering the job market, and thus offering a pathway to economic resilience. In an effort that could foster a sustainable and competent caregiving market to help meet the needs of an aging America, whether training informal caregivers might help them transition into a paid caregiving or other health service role was explored. Caregivers (N = 55) of a chronically or terminally ill family member or friend in a suburban county near Chicago were interviewed. The interview guide addressed household economic effect of illness, emotional burden, and training program interest. Fifty-six percent of caregivers were interested in training to work outside the home, caring for people in other households, 84% indicated a desire to learn more about health care, and 68% reported a desire to explore job possibilities in health care. Eighty-two percent were experienced in working with an individual aged 50 and older. Informal caregivers' interest in a training program to bolster their qualifications for a role in the healthcare workforce, including the option of a formal caregiver position, supports the demand for such a program. Considering the need for healthcare workers to serve the growing elderly population and the desire of informal caregivers to find gainful employment, these informal caregivers could provide the impetus to invest in informal caregiver training. [ABSTRACT FROM AUTHOR]

The primary aim of this study was to examine the pattern of associations among PD patient and caregiver sleep problems, caregiver burden, and caregiver life satisfaction. A secondary aim was to assess whether the pattern of associations differed between Mexican and U.S. caregivers. Analyses were performed on data obtained from 253 caregivers (M age = 59.92). A composite score was produced for caregiver and patient sleep problems. The Zarit Burden Interview and Satisfaction with Life Scale measured caregiver burden and life satisfaction, respectively. A structural equation model with an invariance design was developed to examine and compare the pattern of associations. The model was generally invariant across U.S. and Mexican caregivers. Three significant indirect effects were found: caregiver sleep problems were negatively associated with life satisfaction via caregiver burden (p = 0.003); PD patient sleep problems were positively related to caregiver burden via caregiver sleep problems (p = 0.005) and life satisfaction via caregiver burden and caregiver sleep problems (p = 0.002). PD patient sleep problems were associated with caregiver sleep problems, leading to increased burden in caregivers and poorer life satisfaction. The findings highlight a potential opportunity for empirically supported sleep interventions. Parkinson's disease is a progressive neurological condition that impacts patient and caregiver quality of life. Patient sleep problems contribute to greater caregiver burden, sleep problems, and reduced life satisfaction. The findings suggest patient and caregiver sleep may be a worthwhile target for intervention in order to reduce risk of caregiver burden and improve life satisfaction. [ABSTRACT FROM AUTHOR]

Simple Summary: People with aging or ill family members often fill the role of caretaker. Companion dogs are often viewed as family members and because they age more rapidly than people and have shorter lifespans, having a dog often includes caring for it during its senior years. Caring for an elderly dog can be physically and emotionally challenging, yet we know little about how caring for an aging dog impacts guardians' lives. This study was designed to better understand dog guardians' experiences and perceptions related to caring for their aging dog. We asked dog guardians to complete an online anonymous survey, resulting in a sample size of 284 participants. We found that the impact on guardians when caring for an aging dog appear to share many similarities with caregivers of human family members. Our results suggest that, for many guardians, caring for an aging dog is a complex dynamic with both positive and negative factors that offers an opportunity to deepen the human-animal bond and create positive, rewarding experiences and memories. Companion dogs are increasingly popular, 38.4% of households in the United States include at least one dog. There are numerous benefits to sharing one's home with a dog, but because they age more rapidly than people and have shorter lifespans, acquiring a dog often includes caring for it during its senior years. Caring for an elderly dog can be physically and emotionally challenging, yet the impact on guardians' lives when caring for an aging dog has received minimal scientific attention. This study was designed to better understand dog guardians' experiences and perceptions related to caring for their aging dog. Utilizing an exploratory mixed methods design, this study asked dog guardians to complete an online anonymous survey. From a total of 284 participants, we found that the impact on guardians when caring for an aging dog appears to share many similarities with caregivers of human family members. Our quantitative and qualitative results suggest that, for many guardians, caring for an aging dog is a complex dynamic with both positive and negative factors that offers an opportunity to deepen the human-animal bond and create positive, rewarding experiences and memories. [ABSTRACT FROM AUTHOR]

In the United States, the older adult population will reach over 70 million by 2030. Impaired function and falls from unsupportive housing result in high healthcare costs. Due to the state of housing, there is a need for home modifications to support older adults. This article reviews the current state of home modifications for this population in the United States. There is a dearth of programs and financial support to provide these interventions. Various initiatives exist, however, the lack of national models results in unmet needs. Replicable, high-quality home modification interventions should be supported to serve older adults. [ABSTRACT FROM AUTHOR]

Objectives To determine the difference in receipt of activity of daily living ( ADL) assistance between obese and normal-weight older adults. Design Retrospective cohort study. Setting National Health and Aging Trends Study, 2011-2015. Participants U.S. adults aged 65 and older with ADL disability and a body mass index ( BMI) of 18.5 kg/m2 or greater (N = 5,612) Measurements BMI was classified as normal weight (18.5-24.9 kg/m2), overweight (25.0-29.9 kg/m2), or obese (≥30.0 kg/m2). Primary outcome was self-reported receipt of help with specific ADLs. Models were adjusted for demographic characteristics (age, sex, race), degree of need (self-reported general health, severity of disability), household resources (income, marriage, people in household, number of children), and cognitive status (dementia, proxy respondent). Results Obese with disabilities had lower rates of receiving assistance with walking inside (odds ratio ( OR) = 0.63, 95% confidence interval ( CI) = 0.50-0.81), walking outside ( OR = 0.76, 95% CI = 0.59-0.97), toileting ( OR = 0.68, 95% CI = 0.52-0.89), and getting in and out of bed ( OR = 0.67, 95% CI = 0.50-0.87) than normal-weight older adults after adjustment for respondent demographic characteristics. Level of need and cognitive status partially explained the associations. In fully adjusted models, older adults with obesity still had significantly lower odds of receiving assistance in getting in and out of bed than normal weight adults ( OR = 0.69, 95% CI = 0.49-0.98). Conclusion Older adults with obesity are less likely to receive assistance for ADL disabilities than their normal-weight counterparts-an important concern because of ongoing demographic changes in the United States. [ABSTRACT FROM AUTHOR]

Objectives To examine caregiver factors associated with unmet needs for care of older adults. Design Population-based surveys of caregivers and older adult care recipients in the United States in 2011. Setting 2011 National Health and Aging Trends Study and National Study of Caregiving. Participants Family caregivers (n = 1,996) of community-dwelling older adults with disabilities (n = 1,366). Measurements Disabled care recipient reports of unmet needs for care in the past month with activities of daily living ( ADLs; e.g., wet or soiled clothing), mobility (e.g., have to stay inside), or instrumental activities of daily living ( IADLs; e.g., medication errors). Caregiver reported sociodemographic characteristics, caregiving intensity and tasks performed, health, and psychosocial effects. Results Of the care recipients, 44.3% reported at least one unmet need for care in the past month (38.2% ADL related, 14.6% IADL related). Younger caregivers, caregiving sons, caregivers not living with care recipients, and having supplemental paid caregivers were associated with more unmet needs. Caregivers with recipients reporting two or more unmet needs were more likely to spend more than 100 hours per month caregiving, help with skin care and wounds, report caregiving as emotionally and physically difficult, and report restricted participation in valued activities (all P < .001). Conclusion Unmet ADL needs are prevalent among older adults with family caregivers. Caregivers experiencing high levels of burden, stress, and negative physical and psychosocial impacts may provide substandard or poor care to older adults, which may be a risk factor for neglect. Clinicians caring for disabled older adults should assess their unmet needs and the capacity of caregivers to address them. [ABSTRACT FROM AUTHOR]

Research on the gender division of family labor largely focuses on housework and childcare in spousal couples. This article advances scholarship by examining the gender division of elderly parent care in sibling groups. Using the Health and Retirement Study, a nationally representative survey of elderly Americans, I find that caregiving to elderly parents varies not only by an adult child's own gender, but also by the gender of the siblings with whom caregiving is shared and by the gender of the parent to whom care is provided. The salience of an adult child's gender manifests in two primary ways: not only do daughters provide more care than do sons to their elderly parents, but daughters' caregiving is also more elastic with respect to their own and their parents' attributes than is sons' caregiving. With respect to the gender of the siblings, sons provide relatively less care if they have sisters, whereas daughters provide relatively more care if they have brothers. With respect to the gender of the parent, sons provide relatively more care to fathers, and daughters provide relatively more care to mothers. Finally, analyses did not reveal changes over time. [ABSTRACT FROM AUTHOR]

As baby boomers turn age 65 at the rate of more than 8,000 per day across the next twenty years, and as major advances in medicine and healthcare allow people to live much longer than ever before, the aging of the nation's population will dramatically transform our institutions. Beyond increased demands on Social Security, Medicare, and Medicaid, new ideas and innovations are urgently needed to help older adults age successfully in their homes and communities. [ABSTRACT FROM AUTHOR]

Background:As life expectancy and morbidity related to chronic disease increase, the baby boomers will be called upon to provide care to aging members of their family or to be care recipients themselves.Purpose:Through the theoretical lens of the life course perspective, this review of the literature provides insight into what characteristics of baby boomers separate them from previous caregiving cohorts and how these characteristics will affect family caregiving.Methods:A systematic process to identify literature was completed using the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines.Results:Findings suggest multiple emerging trends related to caregiving, including (1) increasing use of digital technology for information gathering and support, (2) more diversity among caregivers and care recipients, (3) strained finances and loss of entitlements, (4) more complex care and care management, (5) demand for public policies related to caregiving, and (6) balancing work, family, chronic disease, and caregiving.Discussion:Examining the literature related to family caregiving and baby boomers through a life course perspective offers a unique and more complete understanding of emerging trends related to chronic disease management.Translation to Health Education Practice:These emerging trends offer health educators implications for strategies and best practices intended to support those involved in family caregiving. [ABSTRACT FROM AUTHOR]

Objective. To examine the effect of changes in parent-child coresidence on caregiving decisions of non-resident siblings over a 5-year period while controlling for characteristics of the elderly parent and adult children in the family network. Method. We use difference-in-difference models applied to Health and Retirement Study-Assets and Health Dynamics of the Elderly data to test the hypothesis that the formation of a joint household between a parent and one of her children raises the bargaining power of non-resident siblings, who then reduce their care to the parent. Similarly, the dissolution of a parent-child household is expected to increase the bargaining power of the child who no longer coresides with the parent relative to her siblings. Results. We find that children whose parent and sibling begin coresiding during the study period are less likely to provide care and provide fewer hours of care than children whose parents never coresided with a child. Adult children whose parent cease coresiding with a sibling, on the other hand, have a higher likelihood of providing care and provide significantly more hours of care relative to children whose parents either coresided with a sibling in both time periods or never coresided with a child. Discussion. Meeting the needs of the growing elderly population while maintaining them in the community is a particular focus of long-term care policy. To the extent that shared living is an important component of such care, the observed sensitivity of nonresident children's caregiving efforts has implications for the well-being of both disabled parents and their coresiding adult children. [ABSTRACT FROM AUTHOR]

Context The cost of late-life dependency is projected to grow rapidly as the number of older adults in the United States increases in the coming decades. To provide a context for framing relevant policy discussions, we investigated activity limitations and assistance, care resources, and unmet need for a national sample of older adults. Methods We analyzed the 2011 National Health and Aging Trends Study, a new national panel study of more than 8,000 Medicare enrollees. Findings Nearly one-half of older adults, or 18 million people, had difficulty or received help in the last month with daily activities. Altogether, 1 in 4 older adults receiving help lived in either a supportive care (15%) or a nursing home (10%) setting. Nearly 3 million received assistance with 3 or more self-care or mobility activities in settings other than nursing homes, and a disproportionate share of persons at this level had low incomes. Nearly all older adults in settings other than nursing homes had at least 1 potential informal care network member (family or household member or close friend), and the average number of network members was 4. Levels of informal assistance, primarily from family caregivers, were substantial for older adults receiving help in the community (164 hours/month) and living in supportive care settings (50 hours/month). Nearly all of those getting help received informal care, and about 3 in 10 received paid care. Of those who had difficulty or received help in settings other than nursing homes, 32% had an adverse consequence in the last month related to an unmet need; for community residents with a paid caregiver, the figure was nearly 60%. Conclusions The older population-especially those with few economic resources-has substantial late-life care needs. Policies to improve long-term services and supports and reduce unmet need could benefit both older adults and those who care for them. [ABSTRACT FROM AUTHOR]