Changing Places: Longitudinal Trends in Living Arrangements of Persons Living with Dementia

Introduction

Where persons living with dementia (PLWD) reside is determined by a variety of factors, many of which have been changing over time. For example, family caregiver availability is a significant predictor of nursing home admission for PLWD,¹ and declining marriage rates and marriage longevity^2,3 combined with declining birth rates⁴ may be changing the supply of family caregivers. The availability of non-institutional care options may also reduce or delay nursing home admission.⁵ Over the last two decades, Medicaid, the primary payer of long-term services and supports in the United States, has greatly expanded home- and community-based service (HCBS) offerings, and alternative residential care arrangements have grown.⁶ These shifts over time in determining factors may be changing where PLWD live.^7,8 The COVID-19 pandemic, with its disproportionate effect on nursing homes and the home care workforce, may also have altered any existing trends in where PLWD live. Our study uses data from the National Health and Aging Trends Study (NHATS) to examine recent longitudinal trends (2015–2021) in the living arrangements of PLWD and the characteristics of PLWD in each care setting.

Methods

We conducted a repeated cross-sectional study using data from the NHATS, an annual, nationally representative longitudinal survey of Medicare enrollees aged 65 years and older. We limit the sample to non-decedent individuals 70 years of age and older with probable dementia, as defined using the NHATS cognitive impairment algorithm.⁹ We characterized these respondents’ living arrangement (home alone, home with others, nursing home, or residential care setting other than a nursing home (e.g., assisted living facility, continuing care retirement community, board and care home)), functional status, and care needs. We defined functional status as having difficulty with or getting help with self-care tasks, including eating, dressing, toileting, bathing, and getting out of bed. We defined unmet care needs as experiencing an adverse consequence because no one was available to assist with a self-care task. We report descriptive statistics stratified by living arrangement. All analyses were weighted. Analyses were conducted using STATA 17 (StataCorp LP, College Station, TX). This study is exempt from Institutional Review Board review.

Results

Between 2015 and 2021, the proportion of respondents classified as probable dementia ranged from 9.6% to 11.8%. Across the study period, the majority of PLWD lived at home (Figure 1), though the proportion living with others steadily declined from 59% in 2015 to 49% in 2021. The proportion living alone was steady at around 16%, but increased sharply during the pandemic, rising to 22% in 2021. The proportion of PLWD living in a residential care setting other than a nursing home remained steady at around 17%; the proportion living in a nursing home increased from 6% in 2015 to 15% in 2019, then declined during the pandemic. Longitudinal trends were similar across race and ethnicity (not shown). While there were no clear trends in the functional status of PLWD in most living arrangements (Figure 2), functional impairment increased over time among PLWD in residential care settings other than a nursing home (2.3 self-care difficulties in 2015 and 3.0 in 2021). Despite widely varying levels of functional impairment across the care settings, the average number of unmet needs in each setting was similar and remained relatively stable or declined in all care settings except for the residential care setting other than nursing home, where the number of unmet needs increased over time (0.6 unmet needs in 2015 and 1.0 in 2021).

Figure 1.

Proportion of persons living with dementia in each living arrangement over time

Figure 2.

Average number of difficulties with self-care tasks and unmet care needs by living arrangement

Discussion

Prior to the COVID-19 pandemic, changes in population demographics and family structures, accompanied by increasing availability of home- and community-based care options, may have altered where PLWD reside. Our study provides novel evidence of how little living arrangements of PLWD had been changing prior to the pandemic, despite these changing factors. The only major change we find is increasing functional impairment and level of unmet care needs among those residing in a residential care setting other than a nursing home, which is concerning given the limited regulatory oversight and the lack of uniformity in services available in these settings.¹⁰ However, the COVID-19 pandemic altered living arrangements. Of particular note is the increase in PLWD living at home alone. Future work should examine whether this trend continues or was a temporary response to COVID-19 infection concerns. Additionally, although respondents living at home are healthier, their level of unmet need is similar to those living in residential care settings. It is vital that policymakers and providers identify effective strategies for ensuring an adequate level of support and care for PLWD, regardless of their living arrangement.