Pride Month spotlights Alzheimer’s challenges
While June is Pride Month, a celebration of and for the LGBT (lesbian, gay, bisexual and transgender) community, it also provides a reminder that a significant portion of the population faces additional challenges with regard to the sixth-leading cause of death in the United States: Alzheimer’s disease.
Members of the LGBT community represent every segment of the population: people from all races, ethnicities and genders. They also reflect the risk factors for developing the disease of those populations: African Americans are twice as likely as whites to develop Alzheimer’s while Hispanic-Latinos are 50 percent more likely. And women account for nearly two-thirds of all cases of dementia.
What separates the LGBT population from others in their demographic groups is what happens after an Alzheimer’s diagnosis, whether the LGBT individual is the person diagnosed or a caregiver.
According to research conducted by the Alzheimer’s Association with SAGE (Advocacy & Services for LGBT Elders), “LGBT older adults are more likely to exhibit particular vulnerabilities that can exacerbate how Alzheimer’s disease manifests and its impact, such as disproportionately high levels of social isolation and stigmatization as they age, making it difficult to find support.”
LGBT older adult are more likely to age without a spouse or partner, more likely to live alone and less likely to have children to support them. The report states that one-third (34 percent) of LGBT older adults live alone, and 40 percent report that their support networks have become smaller over time.
Factors limiting Alzheimer’s care
Following are several of the challenges the LGBT community face in dealing with an Alzheimer’s diagnosis:
• Family relationships – many LGBT older adults may not have a relationship with their legal or biological families; a traditional source of caregiving support. Consequently, they are more likely to turn to friends and community members, often age contemporaries of the person for whom they are caring.
• Children – since LGBT older adults 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 to support a needed caregiving plan.
• Stigma – when LGBT older adults do access services, their history of discrimination due to stigma can impact their willingness to disclose their LGBT identity, which can delay appropriate assessment and care until their health deteriorates.
◦ 40 percent of LGBT adults in their 60s and 70s report not disclosing their LGBT identity to their health care provider.
• Transgender adults – two-thirds (65 percent) of transgender adults report fear there will be limited access to health care as they age because of previous discrimination experienced and subsequent reluctance to seek care, let alone disclose their identity.
◦ 50 percent of transgender respondents experienced rejection from an immediate family member, 33 percent reported a negative interaction with a medical provider and 23 percent did not see a doctor when they needed to or seek out medical care in the prior year (2015 survey by the National Center for Transgender Equality).
• Income disparity – LGBT older adults and their partners lag behind heterosexual married households in income, assets and home ownership.
◦ 37.4 percent less income from retirement savings than older adult heterosexual married couples.
Social isolation and stigmatization
“Alzheimer’s disease, by its very nature, leads to isolation and stigmatization,” said Amelia Schafer, executive director of the Colorado Chapter of the Alzheimer’s Association. “For the LGBT population, those issues are magnified.”
The Alzheimer’s Association/SAGE research shows that LGBT older adults are more likely to put off or not seek care due to previous healthcare experiences, to be self-reliant, and to advocate for staying in their own homes due to concerns of safety in community living – three dynamics that impact access to help and support.
To help anticipate the challenges that Alzheimer’s disease poses, LGBT caregivers – as well as those facing a dementia diagnosis – are encouraged to avail themselves of resources that can help navigate the process. Those include:
• Accessing quality healthcare. It’s important for you and the person with Alzheimer’s disease to seek supportive health care providers who are inclusive of your identities and who you feel comfortable with as a health care provider. Seek referrals to health care providers from the Gay and Lesbian Medical Association (glma.org) or an LGBT community center in your area.
• Finding support. For some LGBT individuals, a family of origin may not be present or an appropriate or reliable source of support. If this is true of your situation, the Alzheimer’s Association is available all day, every day through its free 24/7 Helpline (800-272-3900). It is staffed by master’s-level clinicians and specialists, and offers confidential support and information on a variety of topics.
◦ Specific to the LGBT community. There are an estimated 2.7 million LGBT people over age 50 in the United States – a number that is increasing rapidly as Baby Boomers age and more people self-identify as LGBT. While the LGBT community faces similar health concerns as the general public, it also faces nuanced challenges. The Alzheimer’s Association partners with SAGE, the country’s oldest and largest organization dedicated to improving the lives of LGBT older people. To learn more about SAGE programs and services, go to www.sageusa.org.
• Plan ahead. Advance directives – legal documents that specify preferences regarding treatment and care, including end-of-life wishes – are valuable tools. Visit the Alzheimer’s and Dementia Caregiver Center at alz.org/care to learn more about planning for the future. This site is also a source of valuable information for caregivers.