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

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). 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, both PLWD and their care contributors are at risk for adverse consequences. PLWD and their care contributors may represent a previously overlooked group who are especially vulnerable to greater financial hardship and subsequent negative health outcomes compared to individuals diagnosed with other chronic diseases, 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. Measures of financial hardship for the general public do not include care contributors, and those in the context of cancer are not appropriate for a disease such as AD/ADRD that has a longer trajectory and often results in a PLWD turning over their financial responsibilities to a care contributor. Furthermore, as the diversity of US older adults increases, many PLWD 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 PLWD and their care contributors. 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 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 a diverse population of PLWD and their care contributors. With projections regarding increasing numbers of older adults 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 all PLWD and their care contributors.