Developing and evaluating new measures of family availability to provide care to people with dementia

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PROJECT SUMMARY/ABSTRACT The number of people with Alzheimer’s disease and related dementias (ADRD) in the US will increase substantially, imposing a tremendous burden on patients, families, and the healthcare system. To inform the discussion of developing a sustainable and effective care system for people with ADRD, a better understanding of family care availability is critically important because it profoundly impacts care utilization and care costs at the onset and over the course of ADRD. The family care network/dynamics may have become more complicated in recent decades with increasing step relationships. Despite recent studies identifying important factors that influence family care availability, there is no published measure to assess the care availability encompassing a broad family context using national data. Although the nature of family networks has changed considerably, there is little empirical evidence on trends in family availability in view of caring for people with ADRD. The proposed study will address these important agendas with the following aims: First, the study will measure family care availability (FCA) for people with ADRD by capitalizing on family data from a nationally representative study of older adults. We will determine the extent to which family contextual factors (e.g., residential proximity, health status, relationship, and competing demands) influence the level and type of care provided for people living with ADRD. We will create multiple sub-indices of FCA specific to a relationship category (e.g., spouse, siblings, adult children, grandchildren) and develop a composite score of FCA. Second, it will determine the extent to which FCA predicts paid and unpaid care services used by people living with ADRD. We will measure FCA prior to the onset of ADRD and its potential impacts on care use and care transitions at the onset and during the subsequent years of ADRD. Third, the study will assess the variation in FCA across demographic (e.g., race/ethnicity) and socioeconomic groups, and birth cohorts. We will also examine the differential effects of FCA on healthcare interacting with other care resources (e.g., financial and care facilities) and assess variation across populations. By leveraging the preliminary data from a mixed methods research by the study team, the proposed research will characterize the broad range of family factors influencing the care availability and provision for people with ADRD. The study will, therefore, significantly advance the measurement of family care resources and inform future surveys on health and aging. Using the novel family availability measure, it will also help identify a vulnerable population lacking family care resources and predict care use and transitions over the course of ADRD. 1