Developing an Inclusive Measure of Financial Hardship for People Living with Dementia and their Care Contributors

University Of Utah, Salt Lake City UT

Investigators

Abstract

PROJECT SUMMARY The number of individuals with Alzheimer’s disease or Alzheimer’s disease-related dementias (AD/ADRD) in the U.S. is projected to increase to 9 million by 2030 (from 6.7 million in 2023). Approximately 1 million of these individuals will identify as lesbian, gay, bisexual, transgender, queer, or another sexual or gender minority (SGM). SGM older adults have fewer options for informal (unpaid) care as they are more likely be single, live alone, and be kin-less, often relying on chosen care contributors—those who provide direct care or who contribute financially to dementia care. SGM older adults also experience greater financial hardship than their non-SGM peers due to disparities in earnings, fewer opportunities to build savings, and limited access to social and legal programs. A diagnosis of AD/ADRD can not only be emotionally devastating for persons living with dementia (PLWD) and their care contributors, but also financially devastating, as AD/ADRD is often cited as the most expensive disease in the world, with the majority of the financial burden falling to PLWD and their care contributors. As financial hardship is associated with worse mental and physical health outcomes and lower health-related quality of life, SGM PLWD—who have been historically marginalized and already experience disproportionate health and financial inequities—are at even greater risk for adverse consequences. Taken together, SGM PLWD and their care contributors may represent a previously overlooked priority population who are especially vulnerable to greater financial hardship and subsequent negative health outcomes compared to their non-SGM peers, indicating the need to screen and prioritize interventions for this group. However, no validated measures exist to assess financial hardship in the context of AD/ADRD nor among SGM PLWD who may have unique support networks involving families of choice. This project will address the need for an inclusive measure of AD/ADRD-related financial hardship (Inclusive Screener for AD/ADRD Financial Expenses or I-SAFE) for use by care contributors to SGM and non-SGM PLWD. Developing and psychometrically validating an inclusive measure of financial hardship in the context of AD/ADRD will lay the groundwork for future intervention studies designed to reduce financial and health inequities among SGM (an NIH-designated health disparities population) and non-SGM PLWD and their care contributors. By incorporating one or more care contributors—which attends to the specific disease trajectory of AD/ADRD—and expanding the concept of family to include non-kin care contributors, I-SAFE will further the current measurement of financial hardship and be inclusive enough to capture the unique needs of SGM PLWD and their care contributors. With projections regarding increasing numbers of older adults (SGM and non-SGM) with AD/ADRD, growing diversity of the population, and rising costs of healthcare, this study has the potential to make a significant impact on the lives of SGM and non-SGM PLWD and their care contributors.