Examining the Impact of the COVID-19 Pandemic on Living Arrangements for People Living With Dementia

A research letter published in the Journal of the American Geriatrics Society examines a longitudinal survey collected before and during the COVID-19 pandemic of Medicare enrollees with probable dementia and examines factors such as living arrangements, care needs, and functional status.  

The location of persons living with dementia (PLWD) is influenced by factors such as the availability of family caregivers, which has been found to significantly predict nursing home admission for PLWD. Declining marriage rates, longer married life, and lower birth rates may also impact the availability of family caregivers, while the availability of noninstitutional care options can potentially delay or reduce the need for nursing home admission. Home- and community-based services and other residential care arrangements have expanded through Medicaid in the past 2 decades.  

The cross-sectional study utilized data from the National Health and Aging Trends Study (NHATS), a nationally representative longitudinal survey of individuals aged 65 and older who are enrolled in Medicare. The researchers analyzed recent trends in the living arrangements of PLWD, especially considering the impact of the COVID-19 pandemic, in individuals aged 70 and older with probable dementia, as determined by the NHATS cognitive impairment algorithm. They noted living arrangements as well as functional status and care needs for PLWD. Functional status was defined as difficulty with or requiring assistance for self-care tasks, while unmet care needs referred to adverse outcomes due to the lack of available assistance. The authors then used weighted analyses to present descriptive statistics based on the participants' living arrangements.  

Between 2015 and 2021, the prevalence of probable dementia among respondents ranged from 9.6% to 11.8%. Throughout the study period, PLWD were residing in their own homes, although the proportion of those living with others decreased steadily from 59% in 2015 to 49% in 2021. While the proportion of PLWD living alone remained relatively stable at around 16%, it saw a significant increase during the pandemic, reaching 22% in 2021. The proportion of PLWD living in a non–nursing home residential care setting remained steady at about 17%, whereas those in nursing homes increased from 6% in 2015 to 15% in 2019 and then declined during the pandemic. 

Before the COVID-19 pandemic, population demographics, family structures, and the availability of home- and community-based care options seemed to have potential impacts on where people with cognitive impairment resided. However, these study results suggest that living arrangements for PLWD had not changed significantly before the pandemic, except for a rise in functional impairment and unmet care needs among those in residential care settings other than nursing homes. This is concerning due to the lack of regulatory oversight and variable services in these settings. However, the pandemic did bring about a notable increase in people with cognitive impairment living alone at home. 

“Future work should examine whether this trend continues or was a temporary response to COVID-19 infection concerns,” said researchers. “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.”  

Reference 

White LLY, Sun C, Coe NB. Changing places: Longitudinal trends in living arrangements of persons living with dementia. J Am Geriatr Soc. Published online December 5, 2023. doi:10.1111/jgs.18698