Saturday, March 14, 2015
Other Dementias Need Better PR!
And speaking of Hollywood Alzheimer’s, as I did last post, what
about the other types of dementia; not only in Hollywood, but everywhere?
Alzheimer’s is not the only type of dementia there is. A lot of people don’t
even know there ARE other types of dementia. In fact, a lot of people don’t
even know that dementia and Alzheimer’s aren’t the same thing!
Dementia is not a specific disease; it is the umbrella term,
as it were, for a group of cognitive symptoms affecting memory, thinking and
social abilities, and what is called executive function. Dementia indicates
problems with at least two cognitive brain functions, like memory loss and inability
to perform daily activities. While Alzheimer’s is the most common cause of
progressive dementia, it is far from the only one. And yet, since Alzheimer’s
still has the best PR of all of the dementias, it’s still the one that gets the
spotlight in the media.
In the beginning, Dad was diagnosed with Alzheimer’s
dementia, by a very well-known expert in the disease. However, to me, with what
little I knew about Alzheimer’s at the time – or dementia at all, for that
matter – there was always a problem lining up Dad’s symptoms with the official
symptoms. Dad’s dementia never fit, it manifested so strangely that it confused
me and made things difficult.
He could do some executive functions, and perform some daily
activities just fine, and he was very aware of certain things being wrong. He
remembered a lot of things, but also repeated the same questions and statements
often. As many caregivers find to their chagrin, he had enough presence and
lucidity to make it very difficult to care for him at times. He wasn’t bad
enough mentally for the dementia wing when we had to move him into it, and yet
he had to go in there because he didn’t understand that he shouldn’t wander and
run away from caregivers.
The moment I heard about Lewy body dementia, I was relieved
to finally have some things explained! I recently ran into another caregiver
who said the exact same thing about her husband: none of his symptoms or
behaviors matched Alzheimer’s and yet that was all his doctors were willing to
consider. Unfortunately, it led to a lot of problems in his care and years of
frustration for her. And, since different dementias can react differently to
different medications, not having the correct diagnosis can be downright
dangerous for the sufferer.
Lewy body dementia - Parkinson’s-related, causing
hallucinations, delusions, memory loss, physical limitations, and changes in
day-to-day ability and cognition. Frontotemporal dementia – a group of
disorders caused by progressive cell degeneration in the brain’s frontal lobes.
Vascular dementia – memory loss, loss of cognitive function, and executive
functions, caused by mini strokes in various parts of the brain. There are even
some types of dementia that are reversible and/or temporary. I also have a friend who went through a tough time with her mother who was experiencing dementia-like symptoms - mixed with some psychotic symptoms - from a combination drug reaction/infection!
While I’m glad that Alzheimer’s organizations are getting
the word out there and helping to increase societal and governmental awareness,
and increasing research budgets… Alzheimer’s is not the only problem in town.
Let’s get the word out about other types of dementia, increase research for all
of them, but most importantly, get each sufferer the proper care for their
disease.
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Great post, Joy. Jim had corticol basal degeneration, a disease I had never heard of. The full name for the Alzheimer's association includes related dementias, but they shortened it several years ago. Each year our Facts and Figures explains other dementias including Lewy Body dementia, but most people don't know what you're talking about. Jim's dementia was described as an Alzheimer's type of dementia.
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