Notes from Updates on Dementia: LGBT Caregiving Challenges
Amy Whelan, Esq. discusses LGBT caregiving issues
Amy Whelan, Esq., is a senior staff attorney at the National Center for Lesbian Rights talked about the history of the LGBT community and common hurdles LGBT elders face in healthcare access. Theses challenges include:
Poverty: LGBT elders are more likely to live in poverty than their straight counterparts
Family estrangement: LGBT elders are more likely to be estranged from their biological families
Families of choice: Often, an LGBT individual’s family of choice may face obstacles to gaining the power to make end of life and other legal decisions
Discrimination: When asked whether they could be open with facility staff about their sexual orientation or gender identity, only 22% said yes
Her presentation was followed by David Coon, Ph.D., associate vice provost for Research, Health Outcomes at Arizona State University, who covered more LGBT issues related to family caregiving.
David Coon, Ph.D., discusses LGBT caregiving issues
He shared several sobering statistics about diverse LGBT older adults, including the fact that 82 percent have been victimized at least once because of their perceived sexual orientation or gender identity. He recommended several strategies to help caregivers overcome the obstacles to care faced by LGBT elders, including:
- Make sure you have legal documentation to protect the rights of partners and other non-biological family members to make caregiving decisions.
- Do not make assumptions about an individual’s sexual orientation or gender identity.
- Adopt a zero tolerance policy regarding discrimination.
Heather Gray, family support specialist discusses LGBT caregiving issues
Finally, Heather Gray, family support specialist with the Alzheimer’s Association talked about some of the real life stories she has encountered in her work with families.
She talked about Eugene and Arnold, a couple in their late 80s who have been partners for more than 60 years. When Eugene moved Arnold into a Memory Care Unit, he was afraid Arnold would be mistreated if they were open about their relationship. The staff and administration of the facility believe the men are brothers vs. a couple.
“I know Arnold is safer there if they don’t know he’s gay,” says Eugene. “I come home and cry because I can’t kiss him or hold him. I remind myself that it is because I love him I pretend to be his brother.”
I underestand well how Eugene felt with Arnold. I watched over my partner for 14 years. The disease took her minute by minute away from me into another world. She because unable to put words in a sentence, and we played charades. I was at her side, and she no longer knew me. But in my caring for her I found Alzheimer’s is “Just a Word” and can never take away the love you have. Therefore I wrote the book, “Just a Word”-Alzheimer’s in her memory.
Thank you for sharing. A good reminder that we all need to be more intentional in creating places of safety for elderly LGBT Americans to feel that their existence is dignified and honored.
At Care Corner in Arizona, we believe and encourage families to support and help their loved ones with dementia. Sexual orientation shouldn’t matter, period.
This is the very topic I spoke about at the GLBT Medical Conference in Atlanta in 2011 as an Early Stage Advisor for the national Alzheimer’s Association. The unfortunate reality for LGBT Alz patients and care partners is that when in “mixed” support groups – often given significant generational age and value differences – the focus of the group shifts from Alzheimer’s to LGBT issues, odd glances, and, for many, more social isolation. Both LGBT care partners and patients often find it best to not discuss personal life issues in the very groups expecting self-disclosure. Perhpas adding Alzheimer’s education and support groups intended for the LGBT patients and care partners might go a long way in helping all who are sitting around the table a little more at-ease. I submitt that sexual orientation does, in fact, matter – very much so – for all parties involved and should be an explicit and ongoing topic for effective outreach and care to Alz LGBT community members and support group participants.