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What are the challenges of Alzheimer’s disease facing the LGBTQ community?
Age is the biggest risk factor for Alzheimer’s disease, with an estimated 2.7 million LGBTQ people over the age of 50.
40% of the population reported that their support network became smaller over time after a dementia diagnosis; 34% lived alone and up to 30% had lower access to care. In addition, fear of discrimination may delay access to care, with 40% of LGBTQ people saying their healthcare provider is unaware of their sexual orientation. Additionally, 51% of LGBTQ seniors expressed a high concern about having enough money to live on after a diagnosis of Alzheimer’s or other dementias (Alzheimer’s Association).
Many LGBTQ seniors may not be related to their legal or biological family, but are supported by a family of their choice. As LGBTQ people age, these selected family members, friends and community members often act as caregivers; since LGBTQ elders are less likely to have children to help them and are more likely to be single, adult children and partners often do not Be part of a care package. Therefore, caregivers of LGBT older adults may be the same age as those they care for. (Map and Sage, 2010).
After a dementia diagnosis, LGBTQ-affected individuals are most likely to find LGBTQ-inclusive services; staff and healthcare professionals who are sensitive and understand the importance of gender identity and sexual orientation.
The personal burden of seeking services that may reduce stress on caregivers, and the arduous journey of Alzheimer’s disease, the fact that caregivers are often deeply and negatively affected by what others think of their loved ones with the disease exacerbated this burden. LGBTQ people may not seek support services because they face or fear being treated poorly because of their LGBTQ status, because they fear the stigma of being diagnosed with the disorder, or both. Likewise, LGBTQ caregivers may fear unequal treatment of themselves or their loved ones, fear of going out on their own and not being able to integrate their personal support network into the care plan, or may have a built-in stigma about the disease. While LGBTQ identities are increasingly dismissed as unwelcome or stigmatized, recent data suggest that social acceptance of LGBTQ people may have stalled in the United States and may even be reversing. (GLAAD, Gay and Lesbian Anti-Defamation League, 2018)
The struggle with social isolation and loneliness is common for people with Alzheimer’s disease and other dementias and their caregivers, and can be amplified in LGBTQ older adults. Additionally, in the 2014 SAGE survey, 51% of LGBTQ people said they were very or very concerned about “having enough money to make ends meet,” compared to 36% of non-LGBTQ people. LGBTQ older adults and people of color are at increased risk of poverty, as Alzheimer’s disease is the most expensive disease in the United States, with an estimated lifetime cost of more than $340,000.
For more information and resources on addressing Alzheimer’s and other dementia challenges facing LGBTQ people, visit the Alzheimer’s Association website: www.alz.org.
Questions about Alzheimer’s disease or related conditions can be sent to Dana Territo, author of “What My Grandchildren Teach Me About Alzheimer’s Disease” at thememorywhisperer@gmail.com.
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