How do we get the word out about dementia to the general public? A few years ago I was just like everybody else. I'd heard of Alzheimer's disease, even knew of a few in the community who "don't recognize their daughter any more, how sad". But it wasn't until I began to search for answers to my own situation that I understood that Alzheimer's was much more than memory loss, but a progressive brain disease eventually affecting every body system and causing physical as well as mental decline. And then there are the "other dementias". I'll bet ninety nine out of a hundred have never heard of Vascular dementia or Lewy Body dementia, let alone the mixed bag of other cognitive diagnoses. I am astonished at how may people ask if their loved one has Alzheimer's or dementia, and what is the difference? I place some of the blame for that on the Alzheimer's Societies themselves. It is accepted that Alzheimer's is the most common form of dementia, but the whole disease process of Alzheimer's is still largely a mystery and other forms of dementia seem to be on the rise. Perhaps a name change is in order, something like Alzheimer's and Dementia Society?
Some 10 years or more ago my Mom underwent a full body MRI checking her spine for degeneration as well as her brain to try and plan the best treatment for recurring TIAs. Her doctor told us then that her scan "lit up like a Christmas tree" and sent us on to a neurologist, who prescribed various medications to better control her blood pressure and cholesterol levels. Our focus at the time was stroke prevention, no one even mentioned the lasting aftereffects of multiple mini strokes. Families who don't know any better allow doctors to prescribe a profusion of medications to treat a bewildering array of symptoms with out ever realizing true extent of the problem.
Even in the most involved of families the problems of old age can sneak up on us unnoticed. Siblings go to war over Mom and Dad's care because symptoms that are obvious to one may be totally missed by others, or dismissed as simple old age. And how many stories do we have to hear about Dad cancelling the life insurance, Mom defaulting on the mortgage, or Great Aunt Sally living in squalor, with banks, corporations and even doctors and social services showing a lack of comprehension or compassion? It seems to me better basic understanding of the more complex symptoms and issues surrounding dementia would go a long way toward helping us get earlier and more appropriate help.