Brody's Notes... LGBTQ Seniors Dealing With Alzheimer's

Aging, Gay & Facing Prejudice In Twilight  

Spoon Feeding Photo By James Estrin The New York Times

By Brody Levesque (Bethesda, Maryland) JAN 23 | As the nation mourns the passage of R. Sargent Shriver this past week, we also need to be celebrating an amazing life of public service filled with an incredible list of accomplishments benefiting his fellow human beings around the globe. But, we should also pause and reflect on the battle that he fought valiantly off the public stage with Alzheimer's disease in private.

Sargent Shriver was diagnosed with Alzheimer's in 2003, and his daughter Maria Shriver, [Schwarzenegger] the former first lady of California was an executive producer of HBO's "The Alzheimer's Project," which included the Emmy Award-winning segment "Grandpa, Do You Know Who I Am," based on her best-selling children's book, "What's Happening to Grandpa?"

In 2009, she testified before the U.S. Senate Special Committee on Aging, offering advice to families and caregivers affected by Alzheimer's and asking the committee for increased funding for Alzheimer's disease programs and research.

Shriver was devastated watching the effects of Alzheimer's consume her father Shriver recalls visiting her father, the Peace Corps’s founding director and brother-in-law to John F. Kennedy, at his assisted living facility in Washington:

“When I went to visit my father recently in Washington, I took him outside. There we were, three people sitting quietly on a park bench—his caregiver and me, with my dad in the middle. After a while, my father put his head down on the caregiver’s shoulder and nuzzled him, just like a kid. It was a sweet moment, looking as he did like a child seeking and getting comfort. But not from me. It was as if I, his only daughter, weren't there at all. I could have been a bystander. Actually, I was a bystander. That blew my mind and broke my heart."

Shriver, a journalist, writes of the disease's personal toll in a forthcoming book, "Alzheimer's in America: The Shriver Report on Women and Alzheimer's," which examines the effects of the disease on those who suffer from it and the toll it takes on caregivers. It was first published as an e-book in October. Free Press will release it as a paperback in March.

This subject, while a hugely important issue for seniors and their families in the United States and elsewhere, it is of particular significance to the greater LGBTQ community. LGBTQ persons are largely overlooked when it comes to thinking about Alzheimer's disease.Mainstream and Gay Media attention seems to have principally focused mainly on younger people to the extent that LGBTQ issues seem to be something for those under age 40. Nothing could be further from the truth of course, but the older generation who were brought up in an era of little if any tolerance are more likely to be hidden from view. This means that they suffer in absolute isolation in cases where this devastating disease strikes. Often, in most cases, there's not a sufficient support network in place to assist them.

A leading expert this difficult subject for the LGBTQ community is Christine Kennard, from York, in the United Kingdom. Kennard has many years of experience in private and public sector nursing care homes for people with dementia. She has worked in a variety of hospital, public and private health settings and specialized in community nursing. Christine is qualified in group analytic psychotherapy, also registered in general and mental health nursing and has a Masters degree in senior mental healthcare issues.

In a recent article Kennard wrote:

When dementia is diagnosed more people become involved in the process of care. What was a previously private domestic arrangement comes into the domain of care and medical services. Issues of confidentiality, prejudice, ignorance, as well embarrassment can influence proper care provision.

The older generation are more likely to have spent a lifetime passing as heterosexual so it can be emotionally upsetting for the person, their partner and relatives, to disclose previously secret information.

Residential care settings can vary in their understanding and preparedness for dealing with the needs of lesbians and gays people with Alzheimer's disease.

The legal position of same sex partners can vary from country to country. In the UK recent reforms now provide the same rights to gay and lesbian couples as heterosexual couples, this is not the case in most places.

Issues of sexuality in the elderly still seem to be concerned more with inappropriate sexual behavior. Sexual expression can be viewed as symptomatic rather than natural. This is often an issue for straight as well as gay people.

Lesbian, gay, bisexual and transgender (LGBT) caregivers can face their own problems with stigma and prejudice.

The current generation of lesbian and gay people are largely hidden from view within care arrangements. For many, this has been a feature of their life and it extends into their twilight years. As a more vocal and open generation follows behind, caregiving services need to consider how they will react to these needs.

Dr. Melinda Lantz, chief of geriatric psychiatry at Beth Israel Medical Center in New York, in a October 2007 New York Times article, notes that while elderly heterosexuals also suffer the indignities of old age, its not to the same extent as the elderly LGBTQ community.

“There is something special about having to hide this part of your identity at a time when your entire identity is threatened,” she said. “That’s a faster pathway to depression, failure to thrive and even premature death.”

Those LGBTQ seniors who end up suffering from the effects of Alzheimer's are placed at greater risk and more often than not, their caregivers are ill equipped to handle the disease's devastation and results. Worse, and what studies are now showing, is more often than not, there are no caregivers or family leaving those afflicted to suffer alone.

Information about LGBTQ services for dementia:
The Lesbian and Gay Aging Issues Network (LGAIN) works to raise awareness about the concerns of lesbian, gay, bisexual and transgender (LGBT) elders and about the unique barriers they encounter in gaining access to housing, healthcare, long-term care and other needed services.