More than one million older adults (age >65) with Alzheimer?s disease and related dementias (ADRD), i.e. almost one-third of the ADRD population in the United States, live alone. Older racial/ethnic minorities are likely to make up a considerable proportion of older adults with ADRD living alone because they are at an increased risk for ADRD compared to Whites. In addition, living alone in old age is common across races and ethnicities. Previous studies, primarily of older Whites, have shown that older adults with ADRD living alone are at greater risk than those living with others for untreated medical conditions, self-neglect, malnutrition, falls, and fires. Older adults living alone who develop ADRD are less likely to receive a diagnosis, and thus may also be at risk for delayed access to essential long-term services and supports (LTSS). Access to LTSS is critical to older adults with ADRD who are living alone because they lack cohabitants to compensate for their diminished capacity for cognitively demanding skills that are essential to living alone. Despite these concerning findings, the contribution of living alone and its associated challenges in older racial/ethnic minorities with ADRD in accessing and using LTSS are unknown. Therefore, the overarching goal of this proposal is to elucidate specific barriers and facilitators to access and use of LTSS among older adults with ADRD living alone, and to examine how such barriers and facilitators may differ by racial/ethnic group and by living arrangement. To gain a multidimensional and in-depth understanding of these barriers and facilitators, we will conduct a mixed methods study to test the hypothesis that, for older adults with ADRD, living alone is a critical barrier to accessing and using LTSS, compared to those who live with others. Building on the Goldberg-Huxley pathway model, we will identify barriers and facilitators to accessing and using LTSS at community-, provider-, and system-levels of analysis. The proposed project has three specific aims.
Aim 1. We will leverage rich data from the Health and Retirement Study to quantify risk factors in accessing and using LTSS for people with ADRD, by race/ethnicity and by living arrangement.
Aim 2. To identify and understand, in depth, barriers and facilitators to LTSS we will interview older adults with ADRD, including their informants. We will include equal numbers of Asians, Latinos, non-Latino Blacks, and non-Latino Whites who live alone (n=200), stratifying by living arrangements (alone vs. with others). To identify barriers and facilitators at a system and provider level, we will also interview administrators and providers of LTSS.
Aim 3. We will integrate qualitative and quantitative findings to develop policy recommendations in consultation with policy experts. Our interdisciplinary team is well-positioned to succeed in this research, as we have developed specific expertise in interviewing diverse older adults with cognitive impairment living alone. Overall, our results will identify key barriers and facilitators accessing and using LTSS for older adults with ADRD across races/ethnicities and living arrangements, that will inform development of targeted policies.
A substantial proportion of the growing elderly population have Alzheimer?s disease or related dementias (ADRD), and their progressive daily challenges to meeting essential needs (e.g., managing finances, medication, transportation) are exacerbated when they live alone and thus lack cohabitants who can compensate for the cognitive impairment, leading to emergent problems including untreated medical conditions, self-neglect, malnutrition, falls, and fires. To help address this large and growing problem, the proposed research will elucidate key barriers and facilitators to accessing and using long-term services and supports (LTSS) for older adults, focusing on those of racial/ethnic minorities with ADRD who live alone, who we hypothesize experience the greatest barriers to accessing and using LTSS. The results of this study will help direct increased focus of the scientific community, community leaders, and policymakers to the role of living arrangements in exacerbating health disparities. 1
