Disparities in financial hardship between LGBTQ+ and non-LGBTQ+ dyads facing dementia

IntroductionAlzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD) are among the costliest diseases worldwide, with most expenses borne by persons living with dementia (PLWD) and their care partners. For lesbian, gay, bisexual, transgender, queer, and other sexual and gender minorities (LGBTQ+), who often have lower incomes and less savings at baseline, dementia care costs can be financially devastating. Despite rising healthcare costs, no current measure captures dementia-related financial hardship. This study explored how LGBTQ+ and non-LGBTQ+ care dyads experienced AD/ADRD-related expenses in relation to financial hardship and quality of life.MethodsAs part of a larger study, we conducted two 90-min focus groups: one with non-LGBTQ+ PLWD and care partners (n = 8), and one with LGBTQ+ PLWD and care partners (n = 5). Participants discussed dementia-related costs and their relevance to financial hardship and quality of life, with questions organized around the three domains of the Financial Hardship Typology: material costs, psychological responses, and coping behaviors. Focus groups were audio recorded, transcribed verbatim, and analyzed using qualitative description.ResultsLGBTQ+ dyads’ concerns appeared distinct from those of non-LGBTQ+ dyads, revealing structural and social barriers contributing to financial hardship. LGBTQ+ dyads described loss of community, reliance on chosen family, unrecognized marriage, legal rights as partners, the need for financial powers of attorney, and uncertainty about future caregiving. Participants also raised concerns about affording placement in facilities with LGBTQ+ anti-discrimination policies.DiscussionThese findings illustrate how structural and social barriers shape financial hardship in the context of dementia. For LGBTQ+ dyads, disparities in financial and social resources contributed to debt, delinquency, bad credit, vehicle repossession, and the need to sell property or relocate. These findings will help inform development of a financial hardship measure capable of capturing dementia’s financial impact across a broad range of PLWD and care partners, while remaining inclusive of LGBTQ+ dyads’ unique experiences. Future research should prioritize sampling understudied populations to broaden perspectives on this issue.