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.

 

 

2 comments:

  1. 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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  2. "Related dementias" just doesn't seem like enough!

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