Disparities in financial hardship between LGBTQ+ and non-LGBTQ+ dyads facing dementia.
- 1College of Nursing, The University of Utah, Salt Lake City, UT, United States.
- 2Department of Economics, University of Utah, Salt Lake City, UT, United States.
- 3School of Public Health, University of Nevada, Las Vegas, Las Vegas, NV, United States.
Abstract
Introduction
Alzheimer'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.Methods
As 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.Results
LGBTQ+ 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.Discussion
These 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.
Related
- Post-intensive care syndrome (PICS), an AAST Critical Care Committee Consensus Guideline: expectations, mental health impairments, financial hardship, and caregiver burden in PICS.
- Study protocol for the Healthier Wealthier Families (HWF) cluster randomised controlled trial: testing the effectiveness and cost-benefits of offering financial counselling to families with young children who report financial hardship at well-child health home visits.
- LGBTQ+ Disparities in Food Insecurity, Food Assistance Use, and Barriers to Food Assistance
- Dementia care gaps in Sub-Saharan Africa: A scoping review of technology, environmental, community perspectives, and financial constraints
- Outdoor extreme heat-related dementia risk and the role of socioeconomic disparities: evidence from 20 years of data on US older adults.
BibTeX
@article{jackson2026disparities,
title = {{Disparities in financial hardship between LGBTQ+ and non-LGBTQ+ dyads facing dementia.}},
author = {Sara Jackson and Moroni Fernandez Cajavilca and Kara Dassel and Jacqueline Telonidis and Nicole Fleming and Jia-Wen Guo and Eli Iacob and Fernando Wilson and Jace Flatt},
journal = {Frontiers in public health},
year = {2026},
month = oct,
doi = {10.3389/fpubh.2026.1961786},
url = {https://europepmc.org/article/MED/42910017},
note = {CC BY},
}
RIS
TY - JOUR
TI - Disparities in financial hardship between LGBTQ+ and non-LGBTQ+ dyads facing dementia.
AU - Sara Jackson
AU - Moroni Fernandez Cajavilca
AU - Kara Dassel
AU - Jacqueline Telonidis
AU - Nicole Fleming
AU - Jia-Wen Guo
AU - Eli Iacob
AU - Fernando Wilson
AU - Jace Flatt
PY - 2026
DA - 2026/10/07
JO - Frontiers in public health
DO - 10.3389/fpubh.2026.1961786
UR - https://europepmc.org/article/MED/42910017
AB - Introduction Alzheimer'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.Methods As 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.Results LGBTQ+ 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.Discussion These 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.
SN - 2296-2565
ER -