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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.]
Speaking
Out Media Kit
Jan.
2, 2002
Media
Release
For
immediate release
Jan. 2, 2002
For
more information:
Debbie Krulicki, Manager, Media Relations and Communications,
Alzheimer Society of Canada -- (416)488-8772 or pr@alzheimer.ca
Quality
of life and coping are of paramount importance to people
in the early stages of Alzheimer's disease -- Alzheimer
Society conducts focus group research
People
in the early stages of Alzheimer's disease place a high
value on receiving a diagnosis in a compassionate and
informative way, on maintaining their independence for
as long as possible and on finding ways to deal with
communication problems, social stigma and isolation.
They also want to learn about the disease, draw strength
from relationships with their family members, friends
and pets, while holding out hope for more effective treatments
and a cure for the disease.
These
are some of the findings from a series of focus groups
the Alzheimer Society conducted with people who participate
in early-stage Alzheimer support groups in communities
across Canada and from responses to an online survey
posted on the Society's Web site, www.alzheimer.ca.
The
focus groups and survey marked the first time the Alzheimer
Society conducted extensive research with people in the
earlier phases of Alzheimer's disease in order to identify
issues that matter most to them. Many contributors were
eager to oblige. "This early stage Alzheimer's disease
is a new idea," said one participant, "and
I believe that this generation of people with dementia
needs to help others understand now while we can tell
them."
Support
groups for those in the early stages of the disease have
recently become popular as a result of earlier diagnoses
and increased awareness of the disease, and have helped
make it possible to ask people how they experience the
disease.
The
following comments provide a glimpse of recurring themes
and what people in the early stages of Alzheimer's disease
had to say about them:
Receiving
the diagnosis
- "The
doctor said I had Alzheimer's disease and left the room."
- "When
he (the doctor) told me I had Alzheimer's disease, I
dissolved into tears. I was shocked."
Independence
- "I'm
in my own home. It means a lot to be in my own home."
- "I
don't want family to feel that they must care for me
past an appropriate time. On the other hand, I fear
being put away too soon."
Communication
problems
- "I
can't read anymore. They run together when I read a
bunch of things."
- "Write
things down in a notebook when you are in a conversation."
Social
stigma and isolation
- "I
never know whether to tell people I have Alzheimer's disease or not."
- "Join
a support group. It reduces isolation."
Relationships
with family members, friends and pets
- "Sometimes
I want to retreat from them (family). They bug me,
tell me, 'Stop. Don't do that. Don't go there. What
are you doing?' Like in kindergarten. I know they're
doing it for my good, but…."
- "A
dog is good strength to you. They know what you're
talking about."
Learning
about the disease
- "You
worry about how it's going to go, what you're going
to do."
- "(We
need to know) what to expect so we can prepare."
Hope
for the future
- "I
hope to be able to handle it (the disease) the way
I feel comfortable, to continue to do some of the things
I used to do."
- "My
real hope is that a cure is here in time for my children."
Alzheimer's disease and related dementias affect over 364,000 Canadians
or 1 in 13 over age 65. With people over 65 forming the
fasting-growing segment of Canada's population, the numbers
of people with Alzheimer's disease and the cost to society
-- approximately $5.5 billion a year -- are expected
to soar in the early part of this century, unless we
find a cure.
In
the meantime, earlier diagnosis of this degenerative
brain disorder and the availability of medications to
treat some symptoms are resulting in more people being
diagnosed with Alzheimer's disease who are capable, physically
fit, and eager to do the things they have always enjoyed,
while learning how to live with their changing abilities.
"I
can still go and have coffee with the boys, play cards,
go hunting, pretty well everything, except the saws," said
one focus group participant. "I can't do woodworking
anymore. I used to do it all my life."
To
address some of the needs and concerns expressed by people
in the early stages, the Alzheimer Society has produced
a booklet entitled Shared Experiences: Suggestions
for those with Alzheimer's disease which includes insights
and suggestions from the focus group participants. As
well, the Society has produced the information on audiotape
to assist those who have difficulties reading.
The
Society has also launched a new section on the Web site,
entitled Creative Space, which will serve as a
place for people with Alzheimer's disease to present their
writings, poetry and art.
"We're
using this unique opportunity to listen to and learn
from people with Alzheimer's disease, so that we can better
address the needs of people in the early stages while
we work toward finding the cause and cure," says
Steve Rudin, Executive Director of the Alzheimer Society.
The
new booklet and audiotape are available from local
Alzheimer Societies across Canada. For more information
about Alzheimer's disease and related dementias, programs
and services, and how you can help, contact your local
Alzheimer Society or visit the Society's Web site at
www.alzheimer.ca.
January
is Alzheimer Awareness Month. The 2002 Awareness Campaign
was made possible through the generosity of our key partners
Pfizer Canada Inc., Manulife Financial, Novartis Pharma
Canada Inc. and our major contributor Janssen-Ortho Inc.
Back
to the Media Kit introduction page.
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