Tue. Nov 29th, 2022

What are some challenges of Alzheimer’s disease faced by the LGBTQ community?

Age is the greatest risk factor for Alzheimer’s disease and an estimated 2.7 million LGBTQ people are over the age of 50.

Forty percent of this population report that their support networks have become smaller over time after a dementia diagnosis; 34% live alone, and up to 30% experience lower ratios of access to care. Additionally, fear of discrimination can delay access to care and 40% of LGBTQ people say their health care providers don’t know their sexual orientation. Further, 51% of LGBTQ older adults report being very concerned about having enough money to live on following an Alzheimer’s or other dementias diagnosis (Alzheimer’s Association).

Many LGBTQ older adults may not have a relationship with their legal or biological families and are instead supported by their families of choice. As LGBTQ people age, these chosen family members, friends and community members often serve as caregivers; since LGBTQ elders are less likely to have children to assist them and more likely to be single, adult children and partners often are not part of the caregiving mix. As a result, caregivers of LGBT older adults may be age contemporaries of the person for whom they are caring. (MAP & SAGE, 2010).

After a dementia diagnosis, LGBTQ affected individuals desire most to find services that are LGBTQ inclusive; having staff and healthcare professionals who are sensitive and who understand the importance of gender identity and sexual orientation.

The personal burdens from seeking services that could potentially reduce caregiver stress, and the arduous journey of Alzheimer’s disease are intensified by the fact that caregivers often are deeply and negatively affected by what others think about their loved one with the disease. An LGBTQ person may not reach out for support services because they face or fear poor treatment due to their LGBTQ identity, because they fear the stigma of being diagnosed with the disease, or both. Similarly, LGBTQ caregivers may fear unequal treatment for themselves or their loved ones, feel unable to integrate their personal support network into care planning for fear of outing themselves, or may have internalized stigma surrounding the disease. Though more and more people do not view LGBTQ identities as undesirable or stigmatized, recent data suggests that increases in social acceptance of LGBTQ people may have plateaued in the U.S. and may even be reversing course. (GLAAD, Gay and Lesbian Alliance Against Defamation, 2018)

Struggles with social isolation and loneliness are common to those with Alzheimer’s disease and other dementias and their caregivers and can be magnified with LGBTQ older adults. Additionally, in a 2014 SAGE survey, 51% of LGBTQ individuals reported being very or extremely concerned about “having enough money to live on” as compared to 36% of non-LGBTQ people. LGBTQ older adults and people of color are at an increased risk of poverty as Alzheimer’s disease is the most expensive disease in the nation, having a lifetime estimated cost of more than $340,000.

For more information and resources for navigating the challenges of Alzheimer’s and other dementias that the LGBTQ population face, visit the Alzheimer’s Association website at www.alz.org.

Questions about Alzheimer’s disease or related disorders can be sent to Dana Territo, author of  “What My Grandchildren Taught Me About Alzheimer’s Disease,” at thememorywhisperer@gmail.com.

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