Dementia is terrible for everyone, but elderly people who are lesbian, gay, bisexual or transgender (LGBT) face extra problems, says Ed Bomba, communications chair for the LGBT Elder Initiative in Philadelphia.
Many have spent much of their lives in the closet and fear discrimination by medical or social service providers or even the people they might live with in nursing homes.
"We don't have children, as a rule. We don't have partners, as a rule, as we age," Bomba said. Many older LGBT people were rejected by their families and have created support systems of friends. But they're often all about the same age.
"We're all aging together, and we all have our own issues as we age, and therefore we become less capable of taking care of each other," Bomba said.
For all those reasons, he thinks it's especially important that LGBT elders know the signs of cognitive decline. "We're trying to educate the community so that we can watch out for each other," he said.
The Elder Initiative recently teamed with the Alzheimer's Association Delaware Valley Chapter for three classes on recognizing and coping with Alzheimer's disease. The two groups also worked with the Penn Memory Center and the Mazzoni Center last year to produce a symposium on brain aging. New programs are in the works.
The small group that attended the last class at the Alzheimer's Association offices in Center City this month asked the kinds of questions people in any crowd would ask: Do people with Alzheimer's know they have it? Is there a cure? Is it normal to fill in gaps in memory with fiction? (Answers: sometimes, no, and yes.)
Bomba still thinks it's important to offer sessions tailored to special interests. "People feel more comfortable if they're in a group that has similar language and cultural issues," he said.
The latest class on communication drew a young woman concerned about her aging gay father; a middle-aged man who helps others find services; and two older men. "Who knows? It might happen to me," explained one, Bruce Robertson, a 69-year-old retired librarian.
Raul Mux, an Alzheimer's Association employee whose mother died of the disease last year, led the session. He often talks to immigrant groups, where isolation of people with dementia also has been a problem.
The association estimates that five million Americans have Alzheimer's. It typically begins with memory problems and, over many years, causes progressive and fatal brain damage. Patients who have HIV are also vulnerable to a different kind of dementia, Mux said.
He thinks early screening by a specialist is important. For one thing, cognitive problems may be caused by something that can be treated, such as an infection. For another, medications can delay some symptoms, although they won't change the course of the disease. A diagnosis should spur the family to start planning for long-term care and it may help some patients accept what's going on.
For the person with Alzheimer's, Mux said, the first impact is emotional. "The person knows something isn't right," he said. That's frightening, and the patient may react with confusion or anger when questioned. Some may try to cover up lapses, such as unpaid bills, or blame them on others.
The important thing for caregivers and friends throughout the course of the illness is to tap into the emotion in a calming way, he said. Body language and facial expressions that convey feelings become more important as the disease gets worse.
Toward the end of her life, his mother became tense when he'd visit because she couldn't talk well. Rather than try to force a conversation, he'd say, "Mom, I'm glad that I'm here." He'd reach out his hands, and she would take them.
Because the community is often family for LGBT people with dementia, Mux hopes the education efforts will increase awareness that those with Alzheimer's "need a lot of support and understanding."
Facts About Alzheimer's
Over five million Americans have Alzheimer's, and up to 16 million will have the disease by 2050.
The cost of caring for those with Alzheimer's and other dementias costs an estimated $214 billion in 2014, rising to $1.2 trillion (in today's dollars) by mid-century.
Nearly one of every three seniors who dies each year has Alzheimer's or another dementia.
Alzheimer's afflicts 270,000 seniors in Pennsylvania and 170,000 in New Jersey.
SOURCE: Alzheimer's Association EndText