— 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.
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.
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
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.
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.
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 — Philadelphia’s LGBT health care and wellness
center — last year to produce a symposium on brain aging.
New programs are in the works.
small group that attended a recent class at the Alzheimer’s
Association offices in Philadelphia 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.)
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.
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.
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.
association estimates that 5 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
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.
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
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.
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
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
million Americans have Alzheimer’s, and up to 16 million
will have the disease by 2050.
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.
one of every three seniors who dies each year has Alzheimer’s
or another dementia.
afflicts 270,000 seniors in Pennsylvania and 170,000 in New