Paid Care for People with Functional Impairment and Serious Illness: Results from the Health and Retirement Study.

BACKGROUND: Paid caregivers (e.g., home health aides) care for individuals living at home with functional impairment and serious illnesses (health conditions with high risk of mortality that impact function and quality of life). OBJECTIVE: To characterize those who receive paid care and identify factors associated with receipt of paid care in the context of serious illness and socioeconomic status. DESIGN: Retrospective cohort study. PARTICIPANTS: Community-dwelling participants ≥ 65 years enrolled in the Health and Retirement Study (HRS) between 1998 and 2018 with new-onset functional impairment (e.g., bathing, dressing) and linked fee-for-service Medicare claims (n = 2521). MAIN MEASURES: Dementia was identified using HRS responses and non-dementia serious illness (e.g., advanced cancer, end-stage renal disease) was identified using Medicare claims. Paid care support was identified using HRS survey report of paid help with functional tasks. KEY RESULTS: While about 27% of the sample received paid care, those with both dementia and non-dementia serious illnesses in addition to functional impairment received the most paid care (41.7% received ≥ 40 h of paid care per week). In multivariable models, those with Medicaid were more likely to receive any paid care (p < 0.001), but those in the highest income quartile received more hours of paid care (p = 0.05) when paid care was present. Those with non-dementia serious illness were more likely to receive any paid care (p < 0.001), but those with dementia received more hours of care (p < 0.001) when paid care was present. CONCLUSIONS: Paid caregivers play a significant role in meeting the care needs of those with functional impairment and serious illness and high paid care hours are common among those with dementia in particular. Future work should explore how paid caregivers can collaborate with families and healthcare teams to improve the health and well-being of the seriously ill throughout the income spectrum.

Individual Socioeconomic Factors Have a Greater Impact on End-of-Life Care Outcomes Than Regional Factors.

Background: End-of-life (EoL) care provided to Americans in urban and rural settings is distinct in terms of both available and delivered services. However, much less is known about which geographic, demographic, and health indicators are associated with disparities in EoL care and how individual versus regional characteristics influence quality of care (QoC). Objective: This study aimed to assess how regionality, rurality, and individual socioeconomic factors are associated with QoC in the last month of life (LML). Design: Nationally representative cross-sectional study using the proxy-completed LML questionnaire as part of the National Health and Aging Trends Study (NHATS). The data were linked at the zip code level to geographic and economic indicators. Settings/Subjects: A total of 2778 NHATS enrollees who died from 2012 to 2020. Measurements: Measurements included population density, socioeconomic indicators, health factors, and health outcomes. The primary independent variable was proxy-reported QoC during the LML (excellent vs. not excellent). Results: In our sample, 52.1% (n = 1447) reported not excellent care and 47.9% (n = 1331) reported excellent care. These populations varied in their demographic and socioeconomic characteristics. After accounting for survey weighting and design, decedents in the top (odds ratio [OR]: 1.58; 95% confidence interval [CI]: 1.08-2.32) income quartile had significantly greater odds of receiving excellent care than decedents in the bottom quartile. Decedents in zip codes with top quartile health outcome metrics had significantly greater odds of receiving excellent care (OR: 1.64; 95% CI: 1.17-2.29) than decedents in zip codes with bottom quartile health outcomes. County rurality index and county health factors were not correlated with QoC in the LML. Conclusions: High QoC at the EoL may be more associated with individual socioeconomic factors than regional indicators, including degrees of rurality. Clinicians should strive to recognize the interplay of individual characteristics and regional indicators to provide more personalized care.

Long-term outcomes after rehabilitation in Medicare Advantage and fee-for-service beneficiaries.

BACKGROUND: Financial incentives in capitated Medicare Advantage (MA) plans may lead to inadequate rehabilitation. We therefore investigated if MA enrollees had worse long-term physical performance and functional outcomes after rehabilitation. METHODS: We conducted a retrospective cohort study of Medicare beneficiaries in the nationally representative National Health and Aging Trends Study. We compared MA and fee-for-service (FFS) beneficiaries reporting rehabilitation between 2014 and 2017 by change in (1) Short Physical Performance Battery (SPPB) and (2) NHATS-derived Functional Independence Measure (FIM) from the previous year, using t-tests incorporating inverse-probability weighting and complex survey design. Secondary outcomes were self-reported: (1) improved function during rehabilitation, (2) worse function since rehabilitation ended, (3) meeting rehabilitation goals, and (4) meeting insurance limits. RESULTS: Among 738 MA and 1488 FFS participants, weighted mean age was 76 years (SD 7.0), 59% were female, and 9% had probable dementia. MA beneficiaries were more likely to be Black (9% vs. 6%) or Hispanic/other race (15% vs. 10%), be on Medicaid (14% vs. 10%), have lower income (median $35,000 vs. $48,000), and receive <1 month of rehabilitation (30% vs. 23%). MA beneficiaries had a similar decline in SPPB (-0.46 [SD 1.8] vs. -0.21 [SD 2.7], p-value 0.069) and adapted FIM (-1.05 [SD 3.7] vs. -1.13 [SD 5.45], p-value 0.764) compared to FFS. MA beneficiaries were less likely to report improved function during rehabilitation (61% [95% CI 56-67] vs. 70% [95% CI 67-74], p-value 0.006). Other outcomes and analyses restricted to inpatient rehabilitation participants were non-significant. CONCLUSIONS AND RELEVANCE: MA enrollment was associated with lower likelihood of self-reported functional improvement during rehabilitation but no clinically or statistically significant differences in annual changes of physical performance or function. As MA expands, future studies must monitor implications on rehabilitation coverage and older adults' independence.

The effect of dementia on patterns of healthcare use in older adults with diabetes.

BACKGROUND: For persons with diabetes, incidence of dementia has been associated with increased hospitalization; however, little is known about healthcare use preceding and following incident dementia. We describe healthcare utilization in the 3 years pre- and post-incident dementia among older adults with diabetes. METHODS: We used the National Health and Aging Trends Study (NHATS) linked to Medicare fee-for-service claims from 2011 to 2018. We included community-dwelling adults ≥65 years who had diabetes without dementia. We matched older adults with dementia (identified with validated NHATS algorithm) at the year of incident dementia to controls using coarsened exact matching. We examined annual outpatient visits, emergency department (ED) visits, hospitalization, and post-acute skilled nursing facility (SNF) use 3 years preceding and 3 years following dementia onset. RESULTS: We included 195 older adults with diabetes with incident dementia and 1107 controls. Groups had a similar age (81.6 vs 81.7 years) and were 56.4% female. Persons with dementia were more likely to be of minority racial and ethnic groups (26.7% vs 21.3% Black, non-Hispanic, 15.3% vs 6.7% other race or Hispanic). We observed a larger decrease in outpatient visits among persons with dementia, primarily due to decreasing specialty visits (mean outpatient visits: 3 years pre-dementia/matching 6.8 (SD 2.6) dementia vs 6.4 (SD 2.6) controls, p < 0.01 to 3 years post-dementia/matching 4.6 (SD 2.3) dementia vs 5.5 (SD 2.7) controls, p < 0.01). Hospitalization, ED visits, and post-acute SNF use were higher for persons with dementia and rose in both groups (e.g., ED visits 3 years pre-dementia/matching 3.9 (SD 5.4) dementia vs 2.2 (SD 4.8) controls, p < 0.001; 3 years post-dementia/matching 4.5 (SD 4.7) dementia vs 3.5 (SD 6.1) controls, p = 0.04). CONCLUSIONS: Older adults with diabetes with incident dementia have higher rates of acute and post-acute care use, but decreasing outpatient use over time, primarily due to a decrease in specialty visits.

The heterogeneity of the homebound: A latent class analysis of a national sample of homebound older adults.

BACKGROUND: Homebound status is a final common pathway for people with a variety of diseases and conditions. There are 7 million homebound older adults in the United States. Despite concerns regarding their high healthcare costs and utilization and limited access to care, the unique subsets within the homebound population are understudied. Better understanding of distinct homebound groups may enable more targeted and tailored approaches to care delivery. Therefore, in a nationally representative sample of homebound older adults we used latent class analysis (LCA) to examine distinct homebound subgroups based on clinical and sociodemographic characteristics. MATERIALS AND METHODS: Using data from the National Health and Aging Trends Study (NHATS) 2011-2019, we identified 901 newly homebound persons (defined as never/rarely leaving home or leaving home only with assistance and/or difficulty). Sociodemographic, caregiving context, health and function, and geographic covariates were derived from NHATS via self-report. LCA was used to identify the existence of distinct subgroups within the homebound population. Indices of model fit were compared for models testing 1-5 latent classes. Association between latent class membership and 1 year mortality was examined using a logistic regression. RESULTS: We identified four classes of homebound individuals differentiated by their health, function, sociodemographic characteristics, and caregiving context: (i) Resource constrained (n = 264); (ii) Multimorbid/high symptom burden (n = 216); (iii) Dementia/functionally impaired (n = 307); (iv) Older/assisted living (n = 114). One year mortality was highest among the older/assisted living subgroup (32.4%) and lowest among the resource constrained (8.2%). CONCLUSIONS: This study identifies subgroups of homebound older adults characterized by distinct sociodemographic and clinical characteristics. These findings will support policymakers, payers, and providers in targeting and tailoring care to the needs of this growing population.

Symptom Management Experience of End-of-Life Family Caregivers: A Population-Based Study.

CONTEXT: In the United States, 30% of all deaths occur at home. Effective symptom management is integral to quality end-of-life (EOL) care. Family caregivers play a major role in EOL symptom management. Recent federal policies emphasize the need to improve training and support for family caregivers. OBJECTIVES: In a nationally representative sample: 1) Characterize the population of caregivers assisting with and reporting difficulty in symptom management at the end of life; and 2) Assess caregiver and care recipient characteristics associated with caregiver report of difficulty. METHODS: Cross-sectional analysis of data from the National Health and Aging Trends Study and National Study of Caregiving. Multivariable logistic regression to assess association between care recipient and caregiver characteristics and caregiver report of difficulty. RESULTS: Caregivers (n = 214) were mean age 57.1 years, 74% female, and 86% white non-Hispanic. Over 2 million family caregivers provided assistance with symptom management in the last month of life in 2017; 78% reported difficulty. Non-Hispanic Black caregivers (aOR 0.24, 95% CI 0.08-0.75), Hispanic caregivers (0.13, 0.03-0.56), and caregivers with lower than high school education (0.26, 0.11-0.63) were less likely to report difficulty. Caregivers of care recipients who received paid care (3.37, 1.30-8.69) were more likely to report difficulty. Receipt of training and support services (1.80, 0.83-3.93) and hospice (1.83, 0.82-4.07) were not associated with caregiver report of difficulty. CONCLUSION: These findings underscore the need to improve training and support for family caregivers in EOL symptom management.