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The Unique Challenges Facing LGBTQ People With Dementia

They include social isolation, health disparities and barriers to services

By Diverse Elders Coalition

(This article appeared previously on the Diverse Elders Coalition website.)

Credit: Adobe Stock

"LGBT and Dementia," a recently released report by the Alzheimer’s Association and SAGE, outlines the unique challenges facing LGBTQ older adults living with Alzheimer’s and other dementias and their caregivers. The report outlines the unique issues that arise when Alzheimer’s disease, sexual orientation and gender identification and expression intersect.

“Living with Alzheimer’s or another dementia is not easy for anyone,” said Sam Fazio, director of quality care and psycho-social research at the Alzheimer’s Association. “But LGBT individuals can often face additional challenges that need to be considered and addressed to ensure this population gets respectful and competent care.”

It is estimated there are 2.7 million LGBTQ people over 50 living in the U.S., and that number is increasing rapidly as boomers age and more people self-identify as LGBTQ. New research presented at the 2018 Alzheimer’s Association International Conference found that about 1 in 13 lesbian, gay or bisexual (LGB) seniors in the U.S. are living with dementia. Dementia rates for the LGB population are 7.4 percent, compared to about 10 percent for the general population.

Additional Challenges

“While the LGBT community faces similar health concerns as the general public, LGBT people who receive a dementia diagnosis — and LGBT caregivers — face uniquely challenging circumstances,” said SAGE CEO Michael Adams. “This report shines a light on these challenges so we can begin taking steps to address them and improve the care and support LGBT people receive.”

Despite recent advances in LGBTQ rights, LGBTQ older people are often marginalized and face discrimination. They are twice as likely to age without a spouse or partner, twice as likely to live alone and three to four times less likely to have children — greatly limiting their opportunities for support. There’s also a lack of transparency, as 40 percent of LGBTQ older people in their 60s and 70s say their health care providers don’t know their sexual orientation.

The report identifies seven areas which can create unique or additional challenges for LGBTQ individuals living with dementia and their caregivers:

  • Stigma
  • Social isolation
  • Poverty
  • Health disparities
  • Sexuality and sexual expression
  • Barriers to utilizing existing services
  • Living with HIV/AIDS

LGBTQ individuals may not reach out for services and support because they fear poor treatment due to their LGBTQ identity, because they fear the stigma of being diagnosed with dementia, or both, the report says. Several studies document that LGBTQ elders access essential services, including visiting nurses, food stamps, senior centers and meal plans, much less frequently than the general aging population.

The Institute of Medicine identified the following pressing health issues for LGBTQ people: lower rates of accessing care (up to 30 percent); increased rates of depression; higher rates of obesity in the lesbian population; higher rates of alcohol and tobacco use; higher risk factors of cardiovascular disease for lesbians and higher incidents of HIV/AIDS for gay and bisexual men. Risk factors for heart disease, including diabetes, tobacco use, high blood pressure and high cholesterol, are also risk factors for Alzheimer’s and stroke-related dementia.

How Organizations Can Help

Among the 16 recommendations for organizations and service providers, the Alzheimer’s Association and SAGE suggest:

  • Expand your definition of family.
  • Educate yourself and your staff on LGBTQ cultural competency.
  • Find or create support groups specifically for LGBTQ people.
  • Partner with local LGBTQ community groups and political organizations.
  • Help LGBTQ people and their families with legal and financial planning.

In support of the recommendations, SAGE and the Alzheimer’s Association are partnering to provide training to Alzheimer's Association staff and chapters across the country, and SAGE is encouraging local collaborations that offer targeted support to LGBTQ older adults who have a dementia diagnosis and their caregivers.

For the complete list of recommendations go to: LGBTQ and Dementia issue brief.

By Diverse Elders Coalition
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