Quality of Life Outcomes for Older Adults with Cognitive Impairment Across Different Living and Care Arrangements

Abstract

The aging population in the United States (U.S.) has led to substantial growth in the number of people living with dementia (PWD). Dementia is associated with increased healthcare utilization and expenditures, as well as decreased quality of life (QOL)—a multidimensional construct encompassing physical, psychological, and social domains. While many PWD live in the community and prefer to age in their own homes, a high level of care is often needed as dementia progresses, typically provided in institutional care settings. In the past few decades, there has been substantial growth in alternatives to nursing homes, including residential care facilities and home and community-based services (HCBS) programs. Current research provides limited understanding of how QOL varies across different living and care arrangements for PWD, or how these care arrangements impact QOL outcomes. This information is essential for identifying settings that best support the well-being of PWD and for informing policies and interventions aimed at improving their QOL. This dissertation addressed these gaps in the literature through three aims focusing on older adults (aged 65 and older) with cognitive impairment. Aim 1 conducted a systematic review and meta-analysis to quantitatively synthesize evidence on how QOL differs across three living situations for older PWD living at home, in nursing homes, and residential care settings. Aim 2 described 12-year trends in five QOL indicators for older adults with cognitive impairment, both overall and by living and care arrangements. Aim 3 assessed the impact of adding formal home care to existing informal care on depressive symptoms and self-rated health among older Medicaid beneficiaries with cognitive and functional impairments. To address potential endogeneity in care decisions, Aim 3 employed an instrumental variable (IV) approach using state-level HCBS generosity as an instrument for formal home care use. Aims 2 and 3 used population-based, repeated cross-sectional data from the Health and Retirement Study (HRS). Aim 1 included thirty-one studies with 13,064 PWD that met the inclusion criteria. No significant differences in global QOL were observed across living settings. However, moderator analyses by country showed significantly higher global QOL in residential care and home-based settings than in nursing homes in the United States and Spain. PWD in residential care settings showed significantly better QOL than those in nursing homes in the meaningful activities, emotion, and social relations domains. No significant differences in domain-specific QOL were observed between home-based and nursing home settings. Aim 2 results showed that trends in five QOL indicators were stable over time, except for a slight upward trend in the prevalence of a high level of life satisfaction, primarily driven by community-dwelling PWD with met home care needs. Trends in QOL indicators also varied substantially based on living and care arrangements. Community-dwelling PWD without functional limitations consistently reported better outcomes across all five QOL indicators, followed by those with either met or unmet home care needs, wherea nursing home residents consistently had the poorest outcomes. Compared to community-dwelling PWD with met home care needs, those with unmet needs experienced worse outcomes in terms of loneliness and life satisfaction. Aim 3 found no significant effects of combined formal and informal care on depressive symptoms and self-rated health, compared to informal care alone, in both the naïve Probit and 2SRI models. These findings remained consistent across several sensitivity analyses, including the use of broader definitions of formal care and cognitive impairment, as well as varying timing of the outcomes. In conclusion, this dissertation found that global and domain-specific QOL and QOL indicators varied substantially based on living and care arrangements among PWD. Adding formal home care to existing informal care did not result in significant improvements in mental and overall health among older Medicaid beneficiaries with cognitive and functional impairments. These findings highlight the need for psychosocial interventions that address multiple dimensions of QOL for PWD, especially for community-dwelling individuals with unmet care needs. Additionally, there is a pressing need to improve the diagnosis and treatment of mental health issues among PWD with functional limitations in the community. Integrating mental health services into formal home care may better address the complex emotional and psychological needs in this high-need population. High-quality evidence using rigorous causal inference methods is needed to examine the impact of different living settings on QOL.