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Central Newfoundland Regional Health Center
People With Alzheimer's Disease and Related Dementias Speak Out
Date : - 14/12/2007
"I want to do as much as I can before this thing cuts me off."

"This thing" is Vascular Dementia, a form of dementia resulting from a single or multiple strokes. Cynthia Williams wants you to know what it's like to live with dementia.

"I want people to know how humiliating it is to be treated like someone who has something so terribly wrong with them that others don't want to be around them. And those who are around, talk about them, over them, around them, and treat them as though they are not intelligent any more, as though they are just fools."

It is estimated that 110,000 Canadians will develop Alzheimer's disease or a related dementia this year. Dementia is a syndrome with a number of symptoms that include loss of memory, judgment and reasoning, and changes in mood and behaviour. Over 60 per cent of all dementia cases are Alzheimer's disease. The majority of people with dementia are 65 years or older; but some are younger, like 58-year-old Cynthia Williams, of Surrey, B.C.

Heightened public awareness of Alzheimer and dementia symptoms and better diagnostic techniques are leading to earlier diagnosis. Medications are also available to treat some symptoms in some people. As a result, more and more adults of all ages are discovering that they have a degenerative brain disorder at a stage in their lives when they are still physically active and mentally capable of talking about how the disease affects them and how they cope.

It's a far cry from 1989 when Cynthia's mother was diagnosed with Alzheimer's disease. "She would say, Cynthia, something is wrong with me but I just don't know what." The family wrestled with the disease for another 10 years until her death.

When Cynthia discovered that she, herself, had Vascular Dementia, she realized that she would have to take early retirement. "Losing my job as a nurse is one of the hardest things I've had to accept -- not being able to be with parents as they watch their kids get better, comforting families as they watch their loved ones pass away; be there and feel needed." Speaking out at workshops and presentations to Alzheimer caregivers, health professionals and anyone who cares enough to listen has helped Cynthia fill that void.

Dale Griffith, 64, of Victoria Beach, Manitoba, has also gone public, letting care workers in long-term care facilities know "what Alzheimer's disease is like from the other side." Recalling an incident where she got lost on the way home from bingo, Dale acknowledges, "Sometimes it's scary to be unsure but I can still ask for directions and get to where I'm going." It also helps that Dale and her husband, Owen, have told friends and neighbours about her diagnosis, so they know to assist her if she seems disoriented.

Early stage Alzheimer's disease symptoms include difficulty finding words, completing thoughts and remembering names. Conversation can be a challenge but 59-year-old Kate Grant who lives north of Lakefield, Ontario perseveres. "I don't want people to finish my sentences. I'm still trying. But sometimes I think, oh to hell with it."

To help cope with their disease, Kate, Dale and Cynthia have joined support groups run by their local Alzheimer Societies.

"Before I went to the early stage group, I was upset with anyone who told me I was forgetting," says Cynthia. "I was upset because I couldn't understand what was happening to me. I couldn't get enough literature on it. The doctors told me the diagnosis but they didn't give me enough depth. They didn't tell me what would happen. What I would be like. What to expect. The Alzheimer Society did all that. They have been a godsend. Without the early stage support group, I would still be lost."

To supplement the information given with the diagnosis, the Alzheimer Society has published two brochures -- First Steps: For Those Recently Diagnosed With Alzheimer Disease and First Steps: For Families of Those Recently Diagnosed With Alzheimer Disease -- describing the kinds of changes to expect and strategies for managing them. The brochures are available from local Alzheimer Societies across Canada and are posted on the website at Also, the Society has created a special section on its website, specifically for people with Alzheimer's disease and related dementias. This includes an exciting new resource written by early stage support group members from British Columbia.

For more information about Alzheimer's disease and related dementias, as well as Alzheimer Society programs and services, contact your local Alzheimer Society.
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