People With Alzheimers Disease and Related Dementias Speak Out

quotI want to do as much as I can before this thing cuts me offquot

quotThis thingquot is Vascular Dementia a form of dementia resulting from a single or multiple strokes Cynthia Williams wants you to know what its like to live with dementia

quotI want people to know how humiliating it is to be treated like someone who has something so terribly wrong with them that others dont 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 foolsquot

It is estimated that 110000 Canadians will develop Alzheimers 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 Alzheimers disease The majority of people with dementia are 65 years or older but some are younger like 58yearold Cynthia Williams of Surrey BC

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

Its a far cry from 1989 when Cynthias mother was diagnosed with Alzheimers disease quotShe would say Cynthia something is wrong with me but I just dont know whatquot 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 quotLosing my job as a nurse is one of the hardest things Ive 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 neededquot 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 longterm care facilities know quotwhat Alzheimers disease is like from the other sidequot Recalling an incident where she got lost on the way home from bingo Dale acknowledges quotSometimes its scary to be unsure but I can still ask for directions and get to where Im goingquot 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 Alzheimers disease symptoms include difficulty finding words completing thoughts and remembering names Conversation can be a challenge but 59yearold Kate Grant who lives north of Lakefield Ontario perseveres quotI dont want people to finish my sentences Im still trying But sometimes I think oh to hell with itquot

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

quotBefore I went to the early stage group I was upset with anyone who told me I was forgettingquot says Cynthia quotI was upset because I couldnt understand what was happening to me I couldnt get enough literature on it The doctors told me the diagnosis but they didnt give me enough depth They didnt 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 lostquot

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 wwwalzheimerca Also the Society has created a special section on its website specifically for people with Alzheimers disease and related dementias This includes an exciting new resource written by early stage support group members from British Columbia

For more information about Alzheimers disease and related dementias as well as Alzheimer Society programs and services contact your local Alzheimer Society

Date : 14 Dec, 2007
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