Faculty Bibliography

BACKGROUND:The prevalence of dementia among Latinos in the United States is growing. We explored the experiences of Latino family caregivers of Latino persons living with moderate to advanced dementia (PLWD), drawing on their extensive experience as caregivers navigating the healthcare system to identify opportunities to improve dementia care. PARTICIPANTS AND SETTING/METHODS:Nineteen Latino caregivers of PLWD who spoke English or Spanish were recruited from outpatient geriatrics clinics and a home-based primary care program in New York City. METHODS:We conducted one-on-one semi-structured interviews with family caregivers of PLWD. Interviews were conducted via phone, in-person, or virtual. Interviews were audio recorded, professionally transcribed, translated (if needed), and analyzed using thematic analysis. RESULTS:We identified two main themes (each with subthemes) that influence Latino dementia caregiver experiences with healthcare: (1) caregiving and understanding of dementia shaped by individual, family, and social factors (subthemes: Caregiver's own understanding of dementia; Lack of support and understanding from family; Latino cultural perspectives on dementia); and (2) navigating formal services amid gaps in cultural alignment and support (subthemes: Trial and error: education and resource gaps; Cultural tension with healthcare). CONCLUSIONS:Culture and family dynamics shape Latino family caregivers' understanding of dementia. Although some had positive experiences, most faced challenges navigating healthcare and experienced gaps in culturally concordant information and support. A culturally centered approach is needed to address these challenges and gaps for the Latino dementia community, including culturally relevant education, resources, and support from the healthcare system and community.

BACKGROUND AND OBJECTIVES/OBJECTIVE:Most Persons with Dementia live in the community, relying on caregiving networks to meet their needs. Caregiving network precarity refers to insecurity or instability in these networks, defined as caregiver(s) being unable or unwilling to continue in their role. Given the importance of caregiving to aging in place and the high burden associated with dementia caregiving, we sought to identify factors associated with caregiving network precarity for community-living, dually-enrolled persons with dementia. RESEARCH DESIGN AND METHODS/METHODS:We linked 2021-2022 administrative, claims, and clinical assessment (baseline and follow-up) data for a diverse sample of community-living, dually-enrolled persons with dementia in New York State. We operationalized caregiving network precarity as having one or more caregivers report being unable or unwilling to continue providing care. We modelled incident caregiving network precarity as a function of care recipient characteristics, health services utilization, and caregiving network factors using multivariable logistic regression. RESULTS:Declines in health status among care recipients were strongly associated with caregiving network precarity. Individuals were more likely to experience caregiving network precarity if they had recently experienced an increase in cognitive impairment (aOR: 2.98; 95% CI: 1.97-4.51), functional impairment (aOR: 1.71; 95% CI: 1.07-2.74), or bowel incontinence frequency (aOR: 2.33; 95% CI: 1.38-3.93), or began resisting care (aOR: 2.47; 95% CI: 1.69-3.61). DISCUSSION AND IMPLICATIONS/CONCLUSIONS:Findings highlight the importance of identifying and addressing shifts in care recipient status and offering targeted supports to caregivers during key inflection points in the care recipient's disease trajectory.

OBJECTIVES/OBJECTIVE:Paying family caregivers (eg, children, friends) is an innovative approach to support older adults in the community and ease direct care workforce shortages. Yet, data about the receipt of paid family care are lacking. In this study, we used a nationally representative sample of Medicare beneficiaries to (1) identify characteristics associated with receipt of paid family care in 2022, and (2) describe national trends in receipt of paid family care between 2011 and 2022. DESIGN/METHODS:Cross-sectional study and time trend analysis. SETTING AND PARTICIPANTS/METHODS:Community-dwelling participants in the National Health and Aging Trends Study (NHATS) who reported receiving help with self-care and mobility tasks between 2011 and 2022. METHODS:We compared characteristics among those who received paid family care (vs paid nonfamily care) in 2022. We examined trends in use and hours of paid family between 2011 and 2022 using the Mann-Kendall Trend test. RESULTS:Of the 941 older adults who reported help with self-care or indoor mobility tasks in 2022, 30% received paid care. Of those, 28.8% received paid family (8.1% of the overall sample). This group was more likely than those with paid nonfamily care to be Medicaid-enrolled (62.5% vs 33.1%, P < .001) and have more living children (3.36 vs 2.53, P > .001). There were no significant trends in the proportion of older adults receiving paid family care between 2011 and 2022 (range from 5.9% to 8.8%). Yet during this time, hours of paid care received decreased among those with paid nonfamily care (P = .005). CONCLUSIONS AND IMPLICATIONS/CONCLUSIONS:A substantial subgroup of older Medicare beneficiaries, including both those with and without Medicaid, received paid family care between 2011 and 2022. Especially given direct care workforce shortages, evidence-based expansion of models of paid family care is an important approach to meet the care needs of older adults living in the community.

Palliative care is essential for patients with serious illness, including those with dementia. Latino older adults are 1.5 times more likely to develop dementia than non-Latino White older adults and often do not receive palliative care, which has been shown to improve quality of life. In addition, there is great diversity among the Latino population, which comprises individuals from 20 countries, with different lived experiences and cultural expressions. Culture-centered palliative care (CCPC) is an approach to better serve the needs of this diverse community. In this article, the authors present a case study and tools for integrating CCPC into nursing practice for Latino people living with dementia and their families.

People living with dementia and their care partners benefit from services and supports from a wide variety of healthcare and social service professionals. This article provides an overview of the dementia care workforce and highlights gaps and opportunities for data collection and research to advance the workforce and its contributions to high-quality care. The authors provide an analysis of literature, trends, research gaps, and research opportunities, drawing from the literature and their own research. There are notable gaps in our ability to track career pathways, assess the impact of training, identify best practices for recruitment and retention, and understand attributes of the workforce that may affect the quality of both workers' lives and the care they provide to people living with dementia. There are many opportunities for new research to help direct care workers meaningfully contribute to the health and well-being of people living with dementia and their care partners. HIGHLIGHTS: The dementia care workforce works in multiple settings and includes many occupations. There are gaps in knowledge regarding the workforce and its role in high-quality care. Evaluation research is needed to improve direct care worker recruitment, retention, and knowledge. Research on caregiving teams including direct care workers, other workers, and families is needed.

OBJECTIVES/OBJECTIVE:Despite growing interest in expansion of consumer- (or self-) directed models of Medicaid-funded personal care, research characterizing program use is limited. We leverage health plan and claims data from a large health plan in New York to examine (1) trends in use of consumer-directed care and (2) the impact of the COVID-19 pandemic on consumer-directed care use. DESIGN/METHODS:Retrospective cohort study. SETTING AND PARTICIPANTS/METHODS:All individuals enrolled in a large, New York health plan who received Medicaid-funded personal care between January 2017 and December 2022 (n = 47,216). METHODS:Proportion of enrollees receiving consumer-directed care during each month and year was calculated for all enrollees and the subgroups of new and existing enrollees. An interrupted time series model was estimated to examine time trends and impact of the COVID-19 pandemic onset on trends. RESULTS:Between 2017 and 2022, the proportion of enrollees receiving consumer-directed care increased from 10.3% to 47.9%. Sociodemographic characteristics and average personal care hours remained stable. Models identified a 6% yearly increase in the proportion of enrollees using consumer-directed care pre-pandemic, (P < .001) an immediate 4% bump in use in March 2020 at the onset of the COVID-19 pandemic (P = .001), and an 8% yearly increase in use post pandemic onset (P = .01). Although trends among existing enrollees mirrored overall trends, new enrollees had larger increases in consumer-directed care use early in the study period, which leveled off after March 2020. CONCLUSIONS AND IMPLICATIONS/CONCLUSIONS:While there was a statistically significant and sustained increase in the proportion of enrollees receiving consumer-directed care at onset of the COVID-19 pandemic, the magnitude of this increase was small in comparison with overall program growth between 2017 and 2022. Additional work to understand how other factors contribute to enrollees choosing consumer-directed care is needed to ensure all Medicaid-funded personal care recipients can have their needs met in the community.

OBJECTIVE:To examine risk factors associated with homeboundness 1-year after traumatic brain injury (TBI) and to explore associations between homebound status and risk of future mortality and nursing home entry. DESIGN/METHODS:Secondary analysis of a longitudinal prospective cohort study. SETTING/METHODS:TBI Model Systems centers. PARTICIPANTS/METHODS:Community-dwelling TBI Model Systems participants (n=6595) who sustained moderate-to-severe TBI between 2006 and 2016, and resided in a private residence 1-year postinjury. INTERVENTIONS/METHODS:Not applicable. MAIN OUTCOME MEASURES/METHODS:Homebound status (leaving home ≤1-2d per week), 5-year mortality, and 2- or 5-year nursing home entry. RESULTS:In our sample, 14.2% of individuals were homebound 1-year postinjury, including 2% who never left home. Older age, having less than a bachelor's degree, Medicaid insurance, living in the Northeast or Midwest, dependence on others or special services for transportation, unemployment or retirement, and needing assistance for locomotion, bladder management, and social interactions at 1-year postinjury were associated with being homebound. After adjustment for potential confounders and an inverse probability weight for nonrandom attrition bias, being homebound was associated with a 1.69-times (95% confidence interval, 1.35-2.11) greater risk of 5-year mortality, and a nonsignificant but trending association with nursing home entry by 5 years postinjury (RR=1.90; 95% confidence interval, 0.94-3.87). Associations between homeboundness and mortality were consistent by age subgroup (±65y). CONCLUSIONS:The negative long-term health outcomes among persons with TBI who rarely leave home warrants the need to re-evaluate home discharge as unequivocally positive. The identified risk factors for homebound status, and its associated negative long-term outcomes, should be considered when preparing patients and their families for discharge from acute and postacute rehabilitation care settings. Addressing modifiable risk factors for homeboundness, such as accessible public transportation options and home care to address mobility, could be targets for individual referrals and policy intervention.

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.