An estimated 6.9 million older people in the United States have Alzheimer’s disease–about 1 in 9 people over the age of 65–and rates are rising as the population ages overall. In Ohio specifically, the Alzheimer’s Association predicted an estimated 13.1% increase in the prevalence of Alzheimer’s dementia between 2020 and 2025.
A growing body of research points to the unique impacts of dementia among the LGBTQ+ population as queer adults age and come out later in life.
According to the Alzheimer’s Association, 7.4% of the LGBTQ+ older adult population is living with dementia. The association’s LGBT Issues Brief drives the point home: “The LGBT older adult population is growing quickly, and compared to non-LGBT counterparts they have limited social networks to support them as they age.”
“Alzheimer’s doesn’t know gender or orientation. It can impact anyone,” said Shane Beneke, a volunteer with the Alzheimer’s Association Cleveland Area Chapter and a member of the LGBTQ+ community.
Beneke’s involvement with advocacy around Alzheimer’s began after the loss of his grandfather to dementia. His family was unprepared for the diagnosis and the care requirements, and they found support through the resources that the Alzheimer’s Association provides.
Now he speaks out about the specific concerns facing Ohio’s LGBTQ+ senior citizens and what Alzheimer’s-related resources are available to the queer community.
Research is lacking for the LGBTQ+ Alzheimer’s community
The Alzheimer’s Association first reported data on the prevalence of dementia in the LGBTQ+ population in 2018 – a glaring gap in research that the association has moved to fill with additional study and interventions for the queer community. In 2019, new research emerged showing higher rates of subjective cognitive decline – self-reported memory problems or confusion – reported by LGBTQ+ Americans compared to their straight counterparts.
Additional statistics have emerged as the body of research grows.
- LGBTQ+ older adults with dementia are about 60% more likely to live alone than the general population.
- LGBTQ+ older adults with dementia are 65% more likely to not be partnered/married and 72% more likely not to have children
- 40% of LGBTQ+ older adults report decreased support networks as they age
- 40% of LGBTQ+ older adults in their 60s and 70s say their healthcare providers don’t know their sexual orientation
Ageism and LGBTQ+ discrimination in healthcare
The intersection of multiple marginalized identities – age, sexual orientation, gender identity, race, disability, and more – increases the risk and impact of healthcare discrimination, which then can lead to reluctance to see a healthcare professional.
As a result, older LGBTQ+ adults may miss the window of opportunity for early detection of many illnesses and have a hard time receiving referrals to specialists they need, like geriatricians and neurologists, to manage a dementia diagnosis.
Longitudinal analysis of national Health and Retirement Study data found that around 20% of the general population of Americans over 50 had experienced age-based discrimination in healthcare settings – defined in this study as receiving “poorer service or treatment than other people from doctors or hospitals.”
In addition, “many LGBTQ+ older adults both fear and actually experience anti-LGBTQ+ bias and discrimination within healthcare institutions, which makes them less likely to seek out support,” said Beneke. “This can lead to social isolation, poverty and health disparities, which all can make an incredibly difficult disease even harder to navigate.”
Ageism in healthcare can take many forms, including patients being rushed and health-care providers being rude or condescending with older patients, keeping older patients out of medical decision-making or leaving older patients alone for long periods between nurse check-ins in care facilities.
Additionally, a 2022 survey by the Center for American Progress found that 17% of LGBTQ respondents and 49% of trans and nonbinary respondents were concerned that disclosure of their sexual orientation or gender identity could lead to a denial of quality medical care.
The LGBTQ+ respondents of CAP’s study had multiple examples of discrimination, including:
- Refusal to recognize the respondent’s family, including a child or same-sex partner
- Refusal to provide health care related to respondent’s actual or perceived sexual orientation or gender identity
- Refusal to see/treat respondent because of their actual or perceived sexual orientation
- Refusal to provide reproductive or sexual health services due to actual or perceived gender identity
- Refusal to change records to reflect respondent’s current name or gender
- Insurance company denial of gender-affirming hormone therapy, surgery or preventive care
- Insurance company coverage of gender-affirming surgery, but no surgery providers in their network
The cost to caregivers
The queer community is known for our development of a support network outside of the heteronormative nuclear family. As a result, LGBTQ+ people become caregivers at a slightly higher rate than the general population (20% compared to 16.7%). Additionally, caregivers for patients with dementia are twice as likely to report financial and emotional strain compared to those who care for older adults without dementia.
LGBTQ+ older adults with Alzheimer’s disease desperately need care, community and social support like transportation, senior housing, legal assistance, support groups and meal programs. The use of these supports can help offset the strain on caregivers, providing much-needed respite from the burden of care. But patients and caregivers alike may shy away from requesting help due to fear, distrust, caregiver guilt or a lack of access due to location or cost.
The Alzheimer’s Association has a special guide for LGBTQ+ Caregivers, especially pertinent to partners regardless of marital status. The association also hosts a free online forum specifically for members of the queer community, and it has a variety of LGBTQ+ centered guides, webinars and provider search functions available.
How can you help?
“There are always volunteer opportunities,” says Beneke.
Whether you prefer to take part in ongoing volunteering or community support, advocate annually during specific events or want to donate in support of research toward prevention, treatment and a cure for dementia, visit the Alzheimer’s Association’s website to learn more.
If you are a medical or social support provider, seek training on cultural competency to better serve the LGBTQ+ population, and make it clear on your signage and website that you are an LGBTQ+ friendly resource. 🔥
IGNITE ACTION
- Know the 10 Early Signs and Symptoms of Dementia
- Find a Volunteer Opportunity with the Alzheimer’s Association
- 10 Healthy Habits for your Brain
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