Relative Impacts of Informal and Formal Care on Health Outcomes for People with Dementia

The need for long-term care services and supports (LTSS) has been growing disproportionately among individuals with Alzheimer’s disease and related dementias (ADRD) due to increasing prevalence of the disease and lack of effective treatment therapies. Informal care (from friends and family members) is the primary source of LTSS for people with ADRD, but individuals with dementia also need formal LTSS (home/community based or institutional settings) as the disease progresses. While the use of different types of LTSS solely focused on costs, relative benefits of informal and formal LTSS may have differential impacts on health of care recipients. The goal of the current study is to investigate the causal effects of informal versus formal care on health and health outcomes of people with ADRD. The results from this study will address a major policy challenge the country is facing in regard to balance the use of different types of LTSS so that individuals with ADRD receive care in home like setting with best possible health outcomes.
Data came from the Health and Retirement Study (HRS) (2000-2014) and the subsample of the HRS, the Aging, Demographic and Memory Study (ADAMS). Dementia diagnosis was based on the modified version of the Telephone Interview of Cognitive Status (TICS) in the HRS and detailed neurological and clinical tests in the ADAMS sample. Separate analysis was performed for both samples to account for the sensitivity of dementia diagnoses.
Measures:
Health and health outcomes include measures of physical, mental, emotional health, and healthcare utilization. Physical health includes functional disability (changes in activities of daily living, instrumental activities of daily living), mobility (difficulties in walking, getting across room, flights of stairs), self-rated health and mortality; mental health by depression (CESD- score). Diener’s measure of life-satisfaction captures emotional health.

Informal care is considered as an indicator variable if care recipients receive it from family members and formal care is measured by the use of home health or nursing home care. As providing informal care is likely to be endogenous, family level instruments (number of daughters, sons, siblings and number of step-children) for informal care were used in the empirical estimation.
Preliminary results:
The study sample includes 10,716 unique respondents from the HRS and about 856 respondents ADAMS sample members. There are significant differences in physical and mental health outcomes between those diagnosed with dementia in ADAMS sample versus those categorized as demented in the HRS. About 14% of respondents in the ADAMS sample used informal care compared to 7% of respondents in the HRS sample. Preliminary results from the two-stage residual inclusion method suggest that informal care was significantly associated with lower physical and mental health outcomes but higher emotional health in both samples, after controlling for individual level characteristics including chronic health. Ongoing analysis is investigating whether the receipt of informal care varies with and without the presence of formal care to demonstrate whether the presence of one form of LTSS affect the effectiveness of the other and whether the effect of informal care varies by disease severity.