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[Please
note that the material on this page was current when
it was first posted. For up-to-date information on this
topic, visit the I Have
Alzheimer's Disease section.]
Voices
of Alzheimer's Disease Media Kit
Jan.
2, 2001
Mat
Article #1
People
With Alzheimer's Disease and Related Dementias Speak Out
"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 (see note 1 below)
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's Disease and First
Steps: For Families of Those Recently Diagnosed With
Alzheimer's 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 Web site at www.alzheimer.ca. Also,
the Society has created a special section on its Web
site, 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 or visit
the Society's Web site at www.alzheimer.ca.
The
2001 Campaign was made possible through the generosity
of our key partners Pfizer Canada Inc. and Manulife Financial,
and our major contributors Novartis Pharmaceuticals Canada
Inc. and Janssen-Ortho Inc.
Note
1: As of November 2001, the estimated number of
new cases of Alzheimer's disease and related dementias
is 83,200.
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