Council hears gaps and models for dementia care in LGBTQ+ and other underserved communities

Brother John Richard Pagan, a member of the council and an LGBTQ veteran, described personal fears about accessing long-term care as an openly LGBTQ person: "I do not want to have to return to the closet in order to receive long term care services," he said, recounting past mistreatment and concerns about acceptance in veterans' facilities and assisted living.

Jason Flatt, a researcher who studies LGBTQ+ aging and cognition, summarized national surveillance and medical-record studies indicating elevated subjective cognitive decline and higher dementia diagnoses in some LGBTQ+ subgroups. Drawing on Behavioral Risk Factor Surveillance System (BRFSS) data, he reported that about 1 in 7 LGBTQ+ respondents age 45 and older reported subjective cognitive decline (versus about 1 in 10 among non-LGBTQ+ respondents in the states that included the optional module). He noted particularly high rates among transgender respondents and warned that stigma and discrimination in medical settings reduce care-seeking and access to diagnosis and support.

Flatt described research using Kaiser Permanente medical-record cohorts and Medicare data that found signals of earlier diagnosis and higher diagnosis rates for some LGBTQ+ groups, and he summarized ongoing and planned registries and studies (Stonewall Generation Study; Rainbows of Caring; RISE registry; Department of Defense–funded Rainbows of Service) to improve measurement and inclusion in research.

The council also heard a program model from On Lok (On Lok Senior Health Services) and Openhouse San Francisco: Club 75, an adult day/community day program launched in October 2021 and licensed by the California Department of Social Services as an LGBTQ+ adult day service. Sandra Rivas, director of senior programs at On Lok, described Club 75 as "the first LGBTQ plus licensed adult day program" that provides culturally affirming activities, nutrition, transportation and caregiver respite and offers a pathway for medically higher-need participants to enroll in PACE (Program of All-Inclusive Care for the Elderly). Jessica Ng, On Lok PACE medical director, described PACE as a federally funded, CMS-authorized program that coordinates primary care, adult day services and home supports to keep nursing-home-eligible older adults in the community.

Program data shared by On Lok: 95 percent of Club 75 participants identify as LGBTQ+; 22 percent are HIV survivors; 12 percent identify as transgender; 22 percent have Alzheimer's disease or a related dementia; 29 percent are dual-enrolled in PACE; 62 percent need financial assistance to enroll; and 81 percent are single with limited support networks. On Lok and Openhouse leaders said they intentionally hire staff with lived experience, provide culturally tailored trainings, and use sliding scale fees and fundraising to preserve affordability.

The presenters and council members emphasized three persistent barriers: discrimination and mistrust in medical and long-term care settings; lack of federal standards that ensure LGBTQ+-inclusive practice in state-regulated assisted living and memory-care facilities; and limited availability and funding for culturally tailored adult day and home-based services in rural areas. Council members highlighted caregiver networks made up of "chosen family" and suggested including those networks in training, respite and navigation services.

Why this matters: LGBTQ+ older adults are a growing population with distinct social, economic and health vulnerabilities that intersect with dementia risk and care needs. Community-designed programs and PACE partnerships provide a tested model to deliver affirming services and pathways to higher levels of care, but scaling will require funding, workforce training, and measurement improvements.