This is a repeat of the single most popular post on my blog, one that is also appearing on eldercare blogs, zines and sites throughout the web. It first appeared on my former website on September 17, 2006, and on this blog in July, 2008. It gets hundreds of "hits" every month and readers frequently tell me how helpful it is to them. So here it is again. Feel free to continue a conversation on this theme, caregiver burnout, caregiver support, or on any other related topic:
In 1906, Dr. Alois Alzheimer presented a key paper to the meeting of the South West German Society of Alienists. In it he described the disease syndrome that now bears his name. Today, Alzheimer’s Disease has become the common term most people use whenever they talk about any kind of dementia. In fact, the very term “Alzheimer’s” has become a catchall for any syndrome in which progressive cognitive dysfunction is the major manifestation.
However, there are dozens of other dementias including, to name just a few: Multi-Infarct Dementia, Frontotemporal Dementia (FTD), Pick's Disease, Progressive Aphasia, Corticobasal Degeneration, Lewy Body Dementia, Senile Dementia, Binswanger’s Disease, Vascular Dementia, Parkinsonian, etc.
From a caregiver’s point of view, it almost doesn’t matter which dementia is at hand. The perpetual grief and mourning felt by the caregiver will be the same regardless of the specific process affecting his or her loved one.
My special interest is in Multi-Infarct Dementia because that is the one that affected my mother and the one I write about in: “DEMENTIA DIARY: A Care Giver’s Journal.” (Another name for this syndrome is Vascular Dementia.)
I should say that I am not a physician or a professional expert in this disease. I am, by profession, a hospital administrator, so I do feel equipped to at least understand the language of the clinicians. What I know comes from 16 years of watching my mother sink into her opaque world, plus 16 years of discussions with physicians providing her medical care.
Here is the way one physician described Multi-Infarct Dementia to me. It is caused by multiple strokes, some call them mini-strokes. The “victim” of this condition may not be, indeed usually is not, aware that anything out of the ordinary has occurred. Neither are his or her significant others.
Perhaps there is momentary weakness, headache, or dizziness, but nothing major. Over time, however, enough damage is done to the brain that symptoms begin to appear such as: confusion, impaired judgment, aphasia, irritability, depression, mood swings, inertia, significant memory loss, and a host of possible others.
Not all symptoms are experienced by every sufferer, but sooner or later most of them may appear. And the symptoms of Multi-Infarct Dementia are not really all that different from Alzheimer’s or other dementias. I’ve been given to understand that these differences are subtle, hard to tell apart for a layman.
Health care professionals have explained that if one were to line up sufferers of each of the various dementias next to one another you could probably differentiate them—but that’s what it would take.
If you are dealing with a dementia in a loved one, good luck and best wishes in your search for help and understanding.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
In 1906, Dr. Alois Alzheimer presented a key paper to the meeting of the South West German Society of Alienists. In it he described the disease syndrome that now bears his name. Today, Alzheimer’s Disease has become the common term most people use whenever they talk about any kind of dementia. In fact, the very term “Alzheimer’s” has become a catchall for any syndrome in which progressive cognitive dysfunction is the major manifestation.
However, there are dozens of other dementias including, to name just a few: Multi-Infarct Dementia, Frontotemporal Dementia (FTD), Pick's Disease, Progressive Aphasia, Corticobasal Degeneration, Lewy Body Dementia, Senile Dementia, Binswanger’s Disease, Vascular Dementia, Parkinsonian, etc.
From a caregiver’s point of view, it almost doesn’t matter which dementia is at hand. The perpetual grief and mourning felt by the caregiver will be the same regardless of the specific process affecting his or her loved one.
My special interest is in Multi-Infarct Dementia because that is the one that affected my mother and the one I write about in: “DEMENTIA DIARY: A Care Giver’s Journal.” (Another name for this syndrome is Vascular Dementia.)
I should say that I am not a physician or a professional expert in this disease. I am, by profession, a hospital administrator, so I do feel equipped to at least understand the language of the clinicians. What I know comes from 16 years of watching my mother sink into her opaque world, plus 16 years of discussions with physicians providing her medical care.
Here is the way one physician described Multi-Infarct Dementia to me. It is caused by multiple strokes, some call them mini-strokes. The “victim” of this condition may not be, indeed usually is not, aware that anything out of the ordinary has occurred. Neither are his or her significant others.
Perhaps there is momentary weakness, headache, or dizziness, but nothing major. Over time, however, enough damage is done to the brain that symptoms begin to appear such as: confusion, impaired judgment, aphasia, irritability, depression, mood swings, inertia, significant memory loss, and a host of possible others.
Not all symptoms are experienced by every sufferer, but sooner or later most of them may appear. And the symptoms of Multi-Infarct Dementia are not really all that different from Alzheimer’s or other dementias. I’ve been given to understand that these differences are subtle, hard to tell apart for a layman.
Health care professionals have explained that if one were to line up sufferers of each of the various dementias next to one another you could probably differentiate them—but that’s what it would take.
If you are dealing with a dementia in a loved one, good luck and best wishes in your search for help and understanding.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
6 comments:
"Not all symptoms are experienced by every sufferer..."
You are exactly right. I am proud of my mother, who rose above so many symptoms. I also understand why I went a little crazy trying to make sense of what was happening.
Thank goodness I could confide in my journal. If you've never tried journaling, I recommend it.
Not sure how to start? Visit Writer Advice, www.writeradvice.com and click on Journaling for Caregivers for ideas.
It worked for me, and I predict it will work for you.
B. Lynn Goodwin
www.writeradvice.com
I agree. Writing is great therapy. For me it resulted in my book, "Dementia Diary," which has become a support system for caregivers all over the world. But it all began with putting pen to paper. Thanks for your post, Lynn.
Bob Tell, Author
Dementia Diary (http://dementia-diary)
I enjoyed reading that article that you have shared again.
I think you are dead on that a caregiver doesn't really care which dementia their loved one has, but your post was really interesting. My mother in law is slipping more and more every time we visit her.
I've downloaded some of the sample chapters of your book and look forward to reading them this evening.
Hi Mary---Your comments are appreciated. My heart goes out to you and your husband in coping with the "slippage" in your mother-in-law. I hope my book chapters helped somewhat with the knowledge that you are not alone. Let me know if they did. And don't forget the healing balm of humor as you go forward with your caregiving responsibilities.
We didn't find out what Mom had definitively. We toyed with the idea of finding out after she passed but I couldn't bear the idea of someone doing an autopsy on Mom. So we'll never really know if it was Alzheimer's or some other type of dementia. Based on her symptoms though we think it was Alzheimer's.
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