What are the Alzheimer’s challenges 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 this population report that their support network has shrunk over time after being diagnosed with dementia. 34% live alone and up to 30% experience reduced access to care. Additionally, fear of discrimination can delay access to treatment, and her 40% of LGBTQ people say their health care providers don’t know their sexual orientation. In addition, 51% of LGBTQ older adults report being very concerned about their ability to pay for themselves after being diagnosed with Alzheimer’s disease or other dementias (Alzheimer’s Association).
Many LGBTQ older adults may not have a legal or biological family relationship and are instead supported by a family of choice. As LGBTQ people grow older, these select family, friends and community members often serve as caregivers. Adult children and partners are often not part of their caregiving because LGBTQ older adults are less likely to help with their children and more likely to be single. As a result, caregivers of LGBT older adults are likely to be the same age as the person they care for. (MAP & SAGE, 2010).
After a dementia diagnosis, LGBTQ-affected individuals are most likely to find LGBTQ-inclusive services. Having staff and medical professionals who are sensitive and understand the importance of gender identity and sexual orientation.
The personal burden of seeking services that may reduce caregiver stress and the difficult journey of Alzheimer’s is deeply negative for caregivers by what others think of their sick loved ones. LGBTQ persons face or fear inadequate treatment because of their LGBTQ identity and fear the stigma of being diagnosed with the disease. You may not reach out to support services because you are Similarly, LGBTQ caregivers may fear unequal treatment of themselves or loved ones, feel unable to integrate personal support networks into care plans for fear of going out, They may internalize their prejudices. While more and more people do not view LGBTQ identities as undesirable or stigmatized, recent data suggests that the increase in social acceptance of LGBTQ people has leveled off in the United States and may even turn around. It suggests that there is a possibility that (GLAAD, Gay and Lesbian Alliance Against Defamation, 2018)
Struggling with social isolation and loneliness is common among people with Alzheimer’s disease and other dementias and their caregivers, and may be exacerbated in LGBTQ older adults. Furthermore, in his 2014 SAGE survey, 51% of LGBTQ individuals were very or very concerned about “having enough money to live” compared to 36% of non-LGBTQ people. reported that it is LGBTQ seniors and people of color are at higher risk of poverty as Alzheimer’s disease is the most expensive disease in the country, with estimated lifetime costs exceeding her $340,000.
For more information and resources on addressing Alzheimer’s disease and other dementia challenges facing LGBTQ people, please visit the Alzheimer’s Association website (www.alz.org).
Questions about Alzheimer’s or related disorders can be sent to Dana Territo, author of What My Grandson Taught Me About Alzheimer’s, at thememorywhisperer@gmail.com.
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