Caregiving for dementia: trends pre-post onset and predictive factors of family caregiving (2002-2018).

Persons living with Alzheimer's and other related forms of dementia rely heavily on care from family and friends for assistance with daily activities ("family care"), but little is known about care transitions over time. We analyzed data from the Health and Retirement Study to describe caregiving patterns, from 2 years before dementia onset and up to 6 years after. Using sociodemographic data from the interview prior to dementia onset, we determined if there are significant factors that predict receipt of family care at dementia onset. We found that one-third (33%) of people living with dementia were receiving help with daily activities 2 years prior to their first positive dementia screen and this increased to 60% during the first positive screen. Nearly all of those receiving assistance received family care. We found multiple significant predictors of receiving family care at onset, including race, education, access to private health insurance, number of activities of daily living that were difficult, number of chronic conditions, and already receiving help. This demonstrates potential gaps in dementia care, and which subpopulations may benefit most from targeted interventions for household members who do not have adequate caregiving resources or programs that provide additional formal care.

Does Consumer Credit Precede or Follow Health Among Older Adults? An Investigation in the Advanced Cognitive Training for Independent and Vital Elderly (ACTIVE) Trial.

Background and Objectives: Consumer credit has shown increasing relevance to the health of older adults; however, studies have not been able to assess the extent to which creditworthiness influences future health or health influences future creditworthiness. We assessed the relationships between 4-year pre and postmorbid consumer credit history and self-rated physical and mental health outcomes among older adults. Research Design and Methods: Generalized estimating equations models assessed pre and postmorbid credit history (credit scores, derogatory accounts, and unpaid accounts in collections) and the onset of poor self-rated health (SF-36 score <50) among 1,740 participants aged 65+ in the Advanced Cognitive Training for Independent and Vital Elderly study from 2001 to 2017, linked to TransUnion consumer credit data. Results: In any given year, up to 1/4 of participants had a major derogatory, unpaid, or collections account, and up to 13% of the sample had poor health. Each 50-point increase in credit score trended toward a 5% lower odds of poor health in the next 1 year, a 6% lower odds in the next 2 years, and a statistically significant finding of 13% lower odds by 3 years. A drop in credit score was associated with a 10% greater odds of poor health in the next year, and having a major derogatory account was associated with an 86% greater odds of poor health in the next 3 years. After poor health onset, credit scores continued to see significant losses up to the 3 years, with larger decrements over time. Discussion and Implications: Having a major derogatory account or a sudden loss in credit may be a time to monitor older adults for changes in health. After a downturn in health, supporting older adults to manage their debt may help stabilize their credit.

Effects of Cognitive Training on Alzheimer's Disease and Related Dementias: The Moderating Role of Social Determinants of Health.

Objective: We examined whether social determinants of health (SDoH) are associated with Alzheimer's disease and related dementias (ADRD) risk and the effects of cognitive training over a 20-year follow-up period. Methods: Data were obtained from 1605 participants in ACTIVE. SDoH measures were created using baseline data at the individual and neighborhood level. Incident ADRD was defined using administrative claims data (1999-2019). Cause-specific hazard models estimated associations between SDoH and claims-based diagnosed ADRD. Results: Higher scores on neighborhood and built environment were associated with lower ADRD risk. Trained participants obtained a greater degree of protection from ADRD when they had higher scores for SDoH domains associated with health care and education access. However, there were fewer significant SDoH moderation effects on cognitive training than expected. Discussion: Future work should continue to explore culturally tailored cognitive training interventions to reduce ADRD risk associated with SDoH that disproportionately affects racially diverse aging populations.

Does Consumer Credit Precede or Follow Changes in Cognitive Impairment Among Older Adults? An Investigation in the Advanced Cognitive Training for Independent and Vital Elderly (ACTIVE) Trial.

OBJECTIVES: We assessed the relationships between pre- and post-morbid consumer credit history (credit scores, debts unpaid, or in collections) and classification of mild (or greater) cognitive impairment (MCI). METHODS: Generalized Estimating Equation models assessed pre-and post-morbid credit history and MCI risk among 1740 participants aged 65+ in the Advanced Cognitive Training for Independent and Vital Elderly (ACTIVE) study, linked to TransUnion consumer credit data. RESULTS: Each 50-point increase in credit score was associated with up to 8% lower odds of MCI in the next 3 years. In contrast, new unpaid collections over doubled the odds of having MCI in the next 3 years. MCI was associated with subsequent credit score declines and a 47%-71% greater risk of having a new unpaid collection in the next 4 years. DISCUSSION: Credit declines may signal risk for future MCI. MCI may lead to financial challenges that warrant credit monitoring interventions for older adults.

Family spillovers and long-term care insurance.

We examine how long-term care insurance (LTCI) affects informal care use and expectations among the insured individuals and co-residence and labor market outcomes of their adult children. We address the endogeneity of LTCI coverage by instrumenting for LTCI with changes in state tax treatment of LTCI insurance policies. We do not find evidence of reductions in informal care use over a horizon of approximately eight years. However, we find that LTCI coverage reduces parents' perceptions of the willingness of their children to care for them in the future and that the behavior of adult children changes, with LTCI resulting in lower likelihoods of adult children co-residing and stronger labor market attachment. These findings provide empirical support for the presence of spillovers of LTCI on the economic behaviors of family members.

Can a Home-Based Collaborative Care Model Reduce Health Services Utilization for Older Medicaid Beneficiaries Living with Depression and Co-occurring Chronic Conditions? A Quasi-experimental Study.

Depression remains a major public health issue for older adults, increasing risk of costly health services utilization. While home-based collaborative care models (CCM) like PEARLS have been shown to effectively treat depression in low-income older adults living with multiple chronic conditions, their economic impact is unclear. We conducted a quasi-experimental study to estimate PEARLS effect on health service utilization among low-income older adults. Our secondary data analysis merged de-identified PEARLS program data (N = 1106), home and community-based services (HCBS) administrative data (N = 16,096), and Medicaid claims and encounters data (N = 164) from 2011 to 2016 in Washington State. We used nearest neighbor propensity matching to create a comparison group of social service recipients similar to PEARLS participants on key determinants of utilization guided by Andersen's Model. Primary outcomes were inpatient hospitalizations, emergency room (ER) visits, and nursing home days; secondary outcomes were long-term supports and services (LTSS), mortality, depression and health. We used an event study difference-in-difference (DID) approach to compare outcomes. Our final dataset included 164 older adults (74% female, 39% people of color, mean PHQ-9 12.2). One-year post-enrollment, PEARLS participants had statistically significant improvements in inpatient hospitalizations (69 fewer hospitalizations per 1000 member months, p = 0.02) and 37 fewer nursing home days (p < 0.01) than comparison group participants; there were no significant improvements in ER visits. PEARLS participants also experienced lower mortality. This study shows the potential value of home-based CCM for participants, organizations and policymakers. Future research is needed to examine potential cost savings.

Patient Experience at US Hospitals Following the Caregiver Advise, Record, Enable (CARE) Act.

Importance: Communication with caregivers is often not established or standardized during hospitalization. The Caregiver Advise, Record, Enable (CARE) Act is a state-level policy designed to facilitate communication among patients, caregivers, and clinical care teams during hospitalization to improve patient experience; 42 states have passed this policy since 2014, but whether it was associated with achieving these goals remains unknown. Objective: To determine whether passage of the CARE Act was associated with improvements in patient experience. Design, Setting, and Participants: This cohort study used a difference-in-differences analysis of short-term, acute-care US hospitals from 2013 to 2019 to analyze changes in patient experience before vs after CARE Act implementation in hospitals located in states that passed the CARE Act compared with those in states that did not. Analyses were performed between September 1, 2021, and July 31, 2022. Exposure: Time-varying indicators for whether a hospital was in a state that passed the CARE Act. Main Outcomes and Measures: Patient-reported experience via the Hospital Consumer Assessment of Healthcare Providers and Systems survey. Results: A total of 2763 hospitals were included, with 2188 hospitals in CARE Act states and 575 in non-CARE Act states. There were differential improvements in patient experience in the measures of communication with nurses (unadjusted mean [SD] score, 78.40% [0.42%]; difference, 0.18 percentage points; 95% CI, 0.07-0.29 percentage points; P = .002), communication with physicians (mean [SD] score, 80.00% [0.19%]; difference, 0.17 percentage points; 95% CI, 0.06-0.28 percentage points; P = .002), and receipt of discharge information (mean [SD] score, 86.40% [0.22%]; difference, 0.11 percentage points; 95% CI, 0.02-0.21 percentage points; P = .02) among CARE Act states compared with non-CARE Act states after policy passage. In subgroup analyses, improvements were larger among hospitals with lower baseline Hospital Consumer Assessment of Healthcare Providers and Systems performance on measures of communication with nurses, communication with physicians, and overall hospital rating. Conclusions and Relevance: These findings suggest that implementation of the CARE Act was associated with improvements in several measures of patient experience. Policies that formally incorporate caregivers into patient care during hospitalization may improve patient outcomes.

Rural disparities in use of family and formal caregiving for older adults with disabilities.

BACKGROUND: As federal and state policies rebalance long-term care from institutional settings to home- and community-based settings, reliance on formal (paid) and family (unpaid) caregivers for support at home nationally has increased in recent years. Yet, it is unknown if use of formal and family care varies by rurality. METHODS: Using the Health and Retirement Study, we describe patterns in receipt of combinations of formal and family home care and self-reported expectation of nursing home use by rurality among community-dwelling adults aged 65+ with functional limitations from 2004 to 2016. RESULTS: Older adults residing in rural areas are more likely to receive any family care than those in urban areas. From 2004 to 2016, a higher proportion of older adults in rural areas receive care from family caregivers exclusively while a lower proportion receive care from formal caregivers exclusively. When examining older adults in urban areas, we find the opposite - a higher proportion of urban adults rely exclusively on formal care and a lower proportion rely exclusively on family care in 2016 compared to 2004. CONCLUSION: We find that national estimates of sources of caregiving and their changes over time mask significant heterogeneity in uptake by rurality. Understanding how older adults in rural areas are, or are not, receiving home-based care compared to their urban peers and how these patterns are changing over time is the first step to informing supports for family and formal caregivers.

Medicaid Integrated Purchasing for Physical and Behavioral Health: Early Adopters' Perceptions of Payment Reform Implementation in Washington State.

The Centers for Medicare and Medicaid Innovation (CMMI) gave rise to the State Innovation Models (SIMs). Medicaid Integrated Purchasing for Physical and Behavioral Health, referred to as Payment Model 1 (PM1), was a core payment redesign area of the Washington State SIM project under which our research team was contracted to provide an evaluation. In doing so, we leveraged an open systems conceptual model to assess qualitatively Early Adopter stakeholders' perceived effects of implementation. Between 2017 and 2019, we conducted three rounds of interviews, examining themes of care coordination, common facilitators and barriers to integration, and potential concerns for sustaining the initiative into the future. Further, we noted the initiative's complexity may require the establishment of enduring partnerships, secure funding sources, and committed regional leadership to ensure longer-term success.

Let's Not Repeat History's Mistakes: Two Cautions to Scientists on the Use of Race in Alzheimer's Disease and Alzheimer's Disease Related Dementias Research.

Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) research has advanced gene and biomarker technologies to aid identification of individuals at risk for dementia. This innovation is a lynchpin in development of disease-modifying therapies. The emerging science could transform outcomes for patients and families. However, current limitations in the racial representation and inclusion of racial diversity in research limits the relevance of these technologies: AD/ADRD research cohorts used to define biomarker cutoffs are mostly White, despite clinical and epidemiologic research that shows Black populations are among those experiencing the greatest burdens of AD/ADRD. White cohorts alone are insufficient to characterize heterogeneity in disease and in life experiences that can alter AD/ADRD's courses. The National Institute on Aging (NIA) has called for increased racial diversity in AD/ADRD research. While scientists are working to implement NIA's plan to build more diverse research cohorts, they are also seeking out opportunities to consider race in AD/ADRD research. Recently, scientists have posed two ways of including race in AD/ADRD research: ancestry-based verification of race and race-based adjustment of biomarker test results. Both warrant careful examination for how they are impacting AD/ADRD science with respect to specific study objectives and the broader mission of the field. If these research methods are not grounded in pursuit of equity and justice, biases they introduce into AD/ADRD science could perpetuate, or even worsen, disparities in AD/ADRD research and care.

Gender of Study Partners and Research Participants Associated With Differences in Study Partner Ratings of Cognition and Activity Level.

OBJECTIVES: Studies of Alzheimer's disease typically include "study partners" (SPs) who report on participants' cognition and function. Prior studies show SP reports differ depending on the relationship between the SP and participant, that is, spouse or adult child. Adult children SPs are typically female. Could differing reports be due to gender? Knowing this may help explain variability in measurement. METHODS: The Aging, Demographics, and Memory Study enrolled a subset of participants from the Health and Retirement Study. Each participant had an SP. Bivariate and multivariable regression models compared 718 SP-participant dyads. RESULTS: In analyses of 4 groups defined by SP and participant gender, dyads composed of 2 women were less likely to identify as White (75.8%, 95% confidence interval [CI], 70.4-80.5) than dyads composed of 2 men (93.3%, 95% CI, 81.2-97.8). In analyses adjusted for the severity of cognitive and functional impairment, women SPs rated women participants as more active than they rated men, mean 2.15 (95% CI, 2.07-2.22) versus mean 2.30 (95% CI, 2.24-2.37), respectively, on a 4-point scale. Similarly, men SPs rated women participants as more active than they rated men, mean 2.1 (95% CI, 2.0-2.2) and mean 2.4 (95% CI, 2.3-2.5), respectively. In an analysis of cognitively unimpaired participants, women SPs rated participants' memory worse than men SPs did (p < .05). DISCUSSION: SP and participant gender influence SPs' reports of another person's cognition and activity level. Our findings expand what is understood about how nondisease factors influence measures of disease severity.

Growth of Private Pay Senior Housing Communities in Metropolitan Statistical Areas in the United States: 2015-2019.

Older adults needing assistance with activities of daily living can receive support in various settings. Senior housing communities, such as independent living, assisted living, and continuing care retirement communities, are an increasingly popular option for adults not requiring nursing home-level care. However, limited research exists due to a dearth of data on these types of communities. We use a proprietary data set to describe the market of private pay senior housing and community-level characteristics in 140 metropolitan statistical areas, from 2015 to 2019. Although the number of senior housing communities increased substantially, the supply of senior housing options supporting the continuum of care has not necessarily kept up with population growth. Describing the supply of senior housing communities across the spectrum of levels of care provides a more complete description of the formal noninstitutional long-term care supply among the 140 most populated metropolitan statistical areas.

Public spending on acute and long-term care for Alzheimer's disease and related dementias.

INTRODUCTION: We estimate the spending attributable to Alzheimer's disease and related dementias (ADRD) to the United States government for the first 5 years post-diagnosis. METHODS: Using data from the Health and Retirement Study matched to Medicare and Medicaid claims, we identify a retrospective cohort of adults with a claims-based ADRD diagnosis along with matched controls. RESULTS: The costs attributable to ADRD are $15,632 for traditional Medicare and $8833 for Medicaid per dementia case over the first 5 years after diagnosis. Seventy percent of Medicare costs occur in the first 2 years; Medicaid costs are concentrated among the longer-lived beneficiaries who are more likely to need long-term care and become Medicaid eligible. DISCUSSION: Because the distribution of the incremental costs varies over time and between insurance programs, when interventions occur and the effect on the disease course will have implications for how much and which program reaps the benefits.

Racial and ethnic disparities in access to and enrollment in high-quality Medicare Advantage plans.

OBJECTIVE: Racial and ethnic minority enrollees in Medicare Advantage (MA) plans tend to be in lower-quality plans, measured by a 5-star quality rating system. We examine whether differential access to high-rated plans was associated with this differential enrollment in high-rated plans by race and ethnicity among MA enrollees. DATA SOURCES: The Medicare Master Beneficiary Summary File and MA Landscape File for 2016. STUDY DESIGN: We first examined county-level MA plan offerings by race and ethnicity. We then examined the association of racial and ethnic differences in enrollment by star rating by controlling for the following different sets of covariates: (1) individual-level characteristics only, and (2) individual-level characteristics and county-level MA plan offerings. DATA COLLECTION/EXTRACTION METHODS: Not applicable PRINCIPAL FINDINGS: Racial and ethnic minority enrollees had, on average, more MA plans available in their counties of residence compared to White enrollees (16.1, 20.8, 20.2, vs. 15.1 for Black, Asian/Pacific Islander, Hispanic, and White enrollees), but had fewer number of high-rated plans (4-star plans or higher) and/or more number of low-rated plans (3.5-star plans or lower). While racial and ethnic minority enrollees had lower enrollment in 4-4.5 star plans than White enrollees, this difference substantially decreased after accounting for county-level MA plan offerings (-9.1 to -0.5 percentage points for Black enrollees, -15.9 to -5.0 percentage points for Asian/Pacific Islander enrollees, and -12.7 to 0.6 percentage points for Hispanic enrollees). Results for Black enrollees were notable as the racial difference reversed when we limited the analysis to those who live in counties that offer a 5-star plan. After accounting for county-level MA plan offerings, Black enrollees had 3.2 percentage points higher enrollment in 5-star plans than White enrollees. CONCLUSIONS: Differences in enrollment in high-rated MA plans by race and ethnicity may be explained by limited access and not by individual characteristics or enrollment decisions.

Paid Care Services and Transitioning out of the Community Among Black and White Older Adults With Dementia.

OBJECTIVES: Paid care provided in the home includes important support services for older adults with dementia such as cleaning and personal care assistance. By reducing unmet needs, these services could delay the transition to residential long-term care, but access may differ across racial groups. This study examined the relationship between paid care and transitioning out of the community among Black and White older adults with dementia. METHODS: Using data from 303 participants (29.4% Black) with probable dementia in the 2011 National Health and Aging Trends Study, competing risk hazards models estimated the association between receiving paid care at baseline and the probability of transitioning out of the community over 8 years (through 2019). Covariate selection was guided by the Andersen model of health care utilization. RESULTS: Paid care was associated with lower risk of transitioning out of the community (subhazard ratios [SHR] = 0.70, 95% CI [0.50, 0.98]). This effect was similar after controlling for predisposing factors and most prominent after controlling for enabling and need for services factors (SHR = 0.65, 95% CI [0.44, 0.95]). There was no racial difference in the use of paid care despite evidence of greater care needs in Blacks. Furthermore, Black participants were less likely to transition out of the community than Whites. DISCUSSION: Paid care services may help delay transitions out of the community. Future research should seek to explain racial differences in access to and/or preferences for home-based, community-based, and residential care.