LGBT and Dementia – a new issues brief developed by the Alzheimer’s Association and SAGE outlines the unique challenges facing LGBT older adults living with Alzheimer’s and other dementias and their caregivers. The brief outlines the unique issues that arise when Alzheimer’s disease, sexual orientation, and gender identification and expression intersect, allowing advocates and care providers to better meet the needs of LGBT elders and their caregivers facing dementia.
“Living with Alzheimer’s or another dementia is not easy for anyone,” said Sam Fazio, Ph.D., director of quality care and psychosocial research, 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 that there are 2.7 million LGBT people over age 50 living in the United States, and that number is increasing rapidly as baby boomers age and more people self-identify as LGBT. New research presented at the 2018 Alzheimer’s Association International Conference found that about one in 13 lesbian, gay or bisexual (LGB) seniors in the United States are living with dementia. Dementia rates for the LGB population are 7.4 percent, compared to about 10 percent for the general population.
“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 brief 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 LGBT rights, LGBT 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 LGBT older people in their 60s and 70s say their healthcare providers don’t know their sexual orientation.
The brief identifies seven areas which can create unique or additional challenges for LGBT individuals living with dementia and their caregivers. They include:
- Social isolation
- Health disparities
- Sexuality and sexual expression
- Barriers to utilizing existing services
- Living with HIV/AIDS
According to the brief, LGBT individuals may not reach out for services and support because they fear poor treatment due to their LGBT identity, because they fear the stigma of being diagnosed with dementia, or both. Several studies document that LGBT 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 LGBT 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.
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 LGBT cultural competency.
- Find or create support groups specifically for LGBT people.
- Partner with local LGBT community groups and political organizations.
- Help LGBT 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 Association staff and chapters across the country, and SAGE is encouraging local collaborations that offer targeted support to LGBT older adults who have a dementia diagnosis and their caregivers.
For the complete list of recommendations go to: LGBT and Dementia issue brief
SAGE is the country’s largest and oldest organization dedicated to improving the lives of lesbian, gay, bisexual, and transgender (LGBT) older people. Founded in 1978 and headquartered in New York City, SAGE is a national organization that offers supportive services and consumer resources to LGBT older people and their caregivers. SAGE also advocates for public policy changes that address the needs of LGBT elders, provides education and technical assistance for aging providers and LGBT community organizations through its National Resource Center on LGBT Aging, and cultural competency training through SAGECare. With staff located across the country, SAGE also coordinates SAGENet, a growing network of affiliates in the United States. Learn more at sageusa.org.
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research, to provide and enhance care and support for all affected, and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. Visit alz.org or call 800.272.3900.
The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.