For six years I have been using the word dementia as either a disease or a dementia, but I am wrong.
In the latest Landmark SD 1, the Alzheimer Society of Canada (ASC) corrected whether dementia is a “disease” or a “dementia.” The following quote from ASC clears this up, I think.
“A note on word choice: ‘Alzheimer’s disease’ is an illness that causes changes to brain structure years before any problems with thinking, memory, mood, communication and/or behaviour emerge. ‘Alzheimer’s dementia’ is the later stages of that same disease; during these stages, problems with thinking, memory, mood, behaviour and/or communication are evident.”
It’s all in the words.
I bring this up here to illustrate how difficult words can be in the medical community. If you go to your doctor complaining of memory issues, and you use the term “senior moment,” they need to question you further to see if you may have a change in brain structure. To me, changes with brain structure means Alzheimer’s disease. This is what my doctor diagnosed for me when she sent me to the hospital for a SPECT brain scan.
If she had only detected issues with my thinking, memory, mood, behaviour and/or communication she would have diagnosed me with Alzheimer’s dementia. This gets quite confusing because most of us with a dementia say that we have Alzheimer’s dementia, which does not have brain structure issues but is in the later stages of when problems with thinking, memory, mood, behaviour and/or communication are evident. To me, the diagnosis as Alzheimer’s disease because of brain structure are worse that Alzheimer’s dementia. Sort of reminds me of the Who’s on First of Laurel and Hardy fame. I wonder if our local doctors are aware of the proper use of the word dementia?
Now that I have explained to you the difference between Alzheimer’s dementia or disease, I suspect you will say “so what?” And you are absolutely correct. Does it make a difference? Where I live in the boonies (rural area), most of the doctors probably would have quickly referred me to a specialist if they suspected a brain health issue. My doctor lived in the GTA and knew enough to send me to a GTA hospital for a brain scan. I was lucky. If I had lived in a rural area and had “senior moments,” my doctor probably would have told me it was primarily old age (I was 79 at the time), or given me a MMSE or MoCA test, or sent me home. Or maybe all three. Goodness knows what would have transpired.
I was first diagnosed as Alzheimer’s disease and the brain scan pointed that out as a “change to brain structure.” But I live in a rural area and get little if no treatment from my doctor for Alzheimer’s. I had hoped to get an instruction manual but nothing is forthcoming. And I don’t see anything in the works. Changes in methodology and training need to be made.
As a matter of fact, one year ago I was diagnosed by a specialist (a referral) as having an autoimmune disease which is called dermatomyositis (DM), quite rare but not terminal. I have been diagnosed with DM now for one year but actually was afflicted by the DM disease six months earlier. My doctor was absent for the six-month period and none of the other doctors, the assistant or nurses had a clue how to diagnose me properly.
Not fun.
It took me six months to get a correct diagnosis – steroid and histamine. I checked the ER doctor’s prescription with our local pharmacist and he agreed it was OK for a month or so. My doctor was due back in almost two months.
My DM was caused by melanoma cancers, which were removed surgically and later by cancer pills. My Alzheimer’s disease or dementia is still around, ignored but not forgotten. The DM gives me swellings, itches and balance problems. I am working hard to understand both diseases but I think that my wife is bearing the brunt of my care.
According to ASC, Ontario had 259,300 people living with dementia in 2020. This is predicted to rise to 756,100 in 2050. That is an increase of 203 per cent.
Something must be done. Writing reports is not enough.
From 2020 to 2050, it is predicted that the number of caregivers will rise by 202 per cent.
We need an action plan to stop the progress of dementia.
Immediately.
I have a plan. But is anybody listening?
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Bob Murray is retired from the graphic communication (printing) industry and has been living in Seaforth since 2015. Murray was diagnosed with Dementia in 2013 and works hard to stop the progress of the disease. Follow him on his blog entitled Voyage with Dementia – https://myvoyage553264702.wordpress.com.
