Faculty Bibliography

Family caregivers of persons with Alzheimer's disease and related dementias (ADRD) living in rural areas face significant health and healthcare challenges. Limited research, however, has explored factors shaping their use of home- and community-based services (HCBS). This study identifies unmet needs among caregivers of people with ADRD in rural Western North Carolina and highlights contextual factors that facilitate HCBS use. Nineteen qualitative interviews were conducted with 21 family caregivers and 1 person with ADRD between 2021 and 2022. Thematic analyses revealed unmet needs among caregivers for information, service navigation, and caregiving support. HCBS use was shaped by multiple factors including illness needs, cultural beliefs, preferences for home-based care, and place-based resources. These findings suggest that culturally tailored HCBS are needed to support people with ADRD and their caregivers in rural Appalachian communities, especially those which facilitate access to paid caregiving, clearly communicate program eligibility requirements, and emphasize service availability.

Many older adults with personal care needs rely on paid caregivers to remain in the community ("home care"). Those without Medicaid or private long-term-care insurance must pay out-of-pocket for care. We used the Health and Retirement Study to identify the prevalence and financial burden of paying for home care out-of-pocket in 2002-2018, by income and dementia status. Over 600 000 people with personal care needs paid out-of-pocket for home care in a given year, 45% of whom have dementia. The quantity and cost of this care were substantial for people with dementia in particular: 51% of those with dementia paying out-of-pocket for home care spent ≥$1000/month. While the probability of paying out-of-pocket for home care increased sharply with income, 52% of people paying out-of-pocket for home care had incomes below 200% of the federal poverty line; this group faced high financial burdens of care. Policies aimed at easing the financial burden of home care are essential, particularly for low-income individuals with dementia who experience the greatest financial burden.

Person-centered care for people living with dementia has been associated with improved functional ability and quality of life, yet little is known about person-centered care in the home settings. Our objective was to explore home care worker perspectives on providing person-centered care for their clients living with dementia. Using secondary qualitative analysis of 22 semi-structured interviews with home care workers, we identified themes related to the Dementia Initiative's person-centered dementia care framework (Initiative, 2013). We found that home care workers acknowledged their client's personhood while also advocating for their needs. However, home care workers encountered barriers to providing person-centered care, including role limitations and challenging dynamics with other home care workers and family caregivers. This analysis can inform further approaches to better integrate home care workers in person-centered healthcare teams and improve how the needs of people living with dementia are identified and met in the home.

Despite the potential of paid caregivers (e.g., home health aides and other home care workers) to improve their clients' health-related outcomes, paid caregivers are rarely integrated in the healthcare team. Geriatrician's perspective on paid caregivers can inform healthcare team approaches that leverage the paid caregiver role to improve older adult health. This secondary qualitative analysis (n = 9 geriatricians, n = 27 interviews) used thematic analysis to identify geriatrician perceptions of when paid caregivers do the most to support the health of older adults. Geriatricians perceived that paid caregiver contributions were greatest in the care of high-needs older adults (e.g., dementia) and that paid caregivers stepped up to fill healthcare gaps when families could not provide all needed support (e.g., no family). Future work should consider how to best integrate paid caregivers who are already providing health-related support into the care team and explore barriers to paid caregiver participation in health-related care more generally.

BACKGROUND AND OBJECTIVES:As long-term care increasingly moves from facilities to the community, paid caregivers (e.g., home health aides, other home care workers) will play an increasingly important role in the care of people with dementia. This study explores the paid caregiver role in home-based dementia care and how that role changes over time. RESEARCH DESIGN AND METHODS:We conducted individual, longitudinal interviews with the paid caregiver, family caregiver, and geriatrician of 9 people with moderate-to-severe dementia in the community; the 29 total participants were interviewed on average 3 times over 6 months, for a total of 75 interviews. Interviews were recorded, transcribed, and analyzed with structured case summaries and framework analysis. RESULTS:Paid caregivers took on distinct roles in the care of each client with dementia. Despite changes in care needs over the study period, roles remained consistent. Paid caregivers, family caregivers, and geriatricians described the central role of families in driving the paid caregiver role. Paid and family caregivers collaborated in the day-to-day care of people with dementia; paid caregivers described their emotional relationships with those they cared for. DISCUSSION AND IMPLICATIONS:Rather than simply providing functional support, paid caregivers provide nuanced care tailored to the needs and preferences of not only each person with dementia (i.e., person-centered care), but also their family caregivers (i.e., family-centered care). Deliberate cultivation of person-centered and family-centered home care may help maximize the positive impact of paid caregivers on people with dementia and their families.

Death and dying are woven throughout the work of home care aides, and yet the care they provide at the end of life (EOL) remains poorly understood. This is due in part to the multiple circumstances under which aides provide EOL care. In this paper, we elucidate the EOL care experiences of aides working in home care agencies in New York City. We conducted in-depth interviews with 29 home care aides, and we analyzed these data using inductive, team-based methods. Our findings show that aides may not be aware of or accept a client's EOL status, and they may avoid EOL care. These conditions shape EOL care, and we detail the committed forms of care aides provide when they are aware and accepting. We recommend improved training, support systems, and policy change to enhance aides' contributions to EOL care, while protecting aides' health and well-being.

BACKGROUND:Almost 11.3 million family caregivers of people with dementia must navigate the health insurance landscape to meet the complex medical and long-term care needs of their family members. This study explores factors that influence family caregivers' decisions about insurance and how these choices affect the care and support people with dementia receive. METHODS:Semi-structured interviews were conducted from June 2022 to January 2023 with 15 family caregivers of people with dementia dual eligible for Medicaid and Medicare and enrolled in home-based primary care in New York City. A set of open-ended questions were asked exploring caregivers' perspectives on navigating insurance plans. Interviews were recorded, transcribed, and analyzed using thematic analysis with both deductive and inductive coding. RESULTS:Analysis revealed three major themes: (1) challenges of Medicaid enrollment, (2) making do with existing insurance, and (3) mistrust of the insurance system. Initial enrollment in Medicaid compounded the stress of adjusting to caregiving. The enrollment process was impacted by clinical factors, financial factors, and input from providers and social workers; however, caregivers could not identify a centralized system for obtaining insurance information and support. Once Medicaid was in place, participants described advocating on behalf of their family member within the constraints of their current insurance plans (Medicare and Medicaid) and ensuring they had the necessary knowledge to understand their family member's coverage. Participants voiced a need for ongoing vigilance to ensure their family members received needed care and support. CONCLUSION/CONCLUSIONS:The challenges family caregivers experience when navigating insurance for their family members with dementia contribute to caregiver burden. Robust and centralized professional support for family members both immediately after a family member's dementia diagnosis and as the disease progresses could increase caregivers' capacity to make insurance decisions that best support their family members with dementia.

OBJECTIVES/OBJECTIVE:A growing proportion of Medicare home health (HH) patients are "community-entry," meaning referred to HH without a preceding hospitalization. We sought to identify factors that predict community-entry HH use among older adults to provide foundational information regarding care needs and circumstances that may prompt community-entry HH referral. DESIGN/METHODS:Nationally representative cohort study. SETTING AND PARTICIPANTS/METHODS:Health and Retirement Study (HRS) respondents who were aged ≥65 years, community-living, and enrolled in Medicare between 2012 and 2018 (n = 11,425 unique individuals providing 27,026 two-year observation periods). METHODS:HRS data were linked with standardized HH patient assessments. Community-entry HH utilization was defined as incurring one or more HH episode with no preceding hospitalization or institutional post-acute care stay (determined via assessment item indicating institutional care within 14 days of HH admission) within 2 years of HRS interview. Weighted, multivariable logistic regression was used to model community-entry HH use as a function of individual, social support, and community characteristics. RESULTS:The overall rate of community-entry HH utilization across observation periods was 13.4%. Older adults had higher odds of community-entry HH use if they were Medicaid enrolled [adjusted odds ratio (aOR) = 1.49, P = .001], had fair or poor overall health (aOR = 1.48, P < .001), 3+ activities of daily living limitations (aOR = 1.47, P = .007), and had fallen in the past 2 years (aOR = 1.43, P < .001). Compared with those receiving no caregiver help, individuals were more likely to use community-entry HH if they received family or unpaid help only (aOR = 1.81, P < .001), both family and paid help (aOR = 2.79, P < .001), or paid help only (aOR: 3.46, P < .001). CONCLUSIONS AND IMPLICATIONS/CONCLUSIONS:Findings indicate that community-entry HH serves a population with long-term care needs and coexisting clinical complexity, making this an important setting to provide skilled care and prevent avoidable health care utilization. Results highlight the need for ongoing monitoring of community-entry HH accessibility as this service is a key component of home-based care for a high-need subpopulation.