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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
Backgrounder
-- Issues and Ideas
Speaking
Out -- Insights from people with Alzheimer's disease
These
issues and ideas are taken from findings from a series
of focus groups the Alzheimer Society conducted with
people who participate in early-stage Alzheimer support
groups and from responses to an online survey posted
on the Society's Web site.
The
Alzheimer Society can put you in touch with individuals,
caregivers and experts who are willing to share their
stories and expertise. Contact the Alzheimer Society
at pr@alzheimer.ca for
more information and to arrange interviews.
1.
Communicating the diagnosis
"When
he (the doctor) told me I had Alzheimer's disease, I
dissolved into tears. I was shocked. It was the end
of my life as far as I was concerned."
"The
doctor said I had Alzheimer's disease and left the room."
Telling
someone that he or she has Alzheimer's disease is one of
the most difficult tasks that doctors face. But if it
is done sensitively and the person is offered emotional
and practical support, it can help a person accept the
diagnosis and seek appropriate resources.
2.
Driving
"I
want to remain independent and not lose my licence."
"Driving
picks me up. It's wonderful to have a car, still have
independence."
"My
wife doesn't drive, so family would have to help out."
Giving
up a driver's license is one of the most traumatic experiences
for people with Alzheimer's disease and their families.
It can be the first real catalyst for realizing the full
implications of the disease. In some provinces, physicians
have a statutory duty to report medically unfit drivers.
- Talk
to people with Alzheimer's disease who continue to drive.
- Discuss
with individuals and family members their experience
of losing or taking away the licence.
- Talk
to a clinician about how Alzheimer's disease affects
a person's ability to drive.
- Explore
the reporting requirements for physicians in your province.
- Find
out about testing that determines if it is safe for
a person with Alzheimer's disease to drive.
- The
Alzheimer Society has ethical
guidelines regarding the issue of driving.
3.
Communication problems
"I
can't read anymore."
"Write
things down in a notebook when you are in a conversation."
"You
ask for something, then you don't remember what you
wanted; so you shut up after a while, you become really
silent."
A
variety of speech, thought and language problems can
surface in the early stages of Alzheimer's disease. People
may have difficulty finding the right word, reading or
following threads of conversation in a group. They may
lose a train of thought. Some people compensate by creating
phrases to explain the missing word, inventing new words,
repeating familiar words, using nonverbal gestures, avoiding
social situations, or simply shutting down.
- Meet
individuals who struggle with communication problems.
Learn about their strategies for coping with stressful
situations.
- Find
out about verbal and non-verbal ways to improve communication
with people with Alzheimer's disease.
4.
Social stigma and isolation
"Alzheimer's
is a lonely thing. We have to change that."
"I
never know whether to tell people I have Alzheimer's disease or not."
"Join
a support group. It reduces isolation."
For
many people there is a stigma surrounding Alzheimer's disease.
This stigma is mostly based on fear and a lack of understanding
about the disease, its symptoms and how it affects people.
Open discussion about Alzheimer's disease can help reduce
some of the stigma and fear.
- Talk
to people with Alzheimer's disease. Find out how they
experience the disease and how it makes them feel.
- Hear
their suggestions for family members and friends to
help reduce isolation.
- Learn
about ways to help individuals and families living
with Alzheimer's disease -- see the Alzheimer Society
brochure, Ways to
Help: Assisting People Living with Alzheimer's disease.
5.
Relationships
"To
stay with your spouse and try not to be too much of
a bother to them. That's really important."
"Animals
are good for people."
"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…"
Family
support is a bedrock for people with Alzheimer's disease
but the physical, emotional and behavioural changes brought
on by the disease can challenge the best of family relationships.
As the disease progresses, family roles are often reversed.
Relationships with pets can be therapeutic.
- Talk
to people with Alzheimer's disease about the value they
place on their relationships with their families. Discover
how they feel about becoming dependent on others.
- Discover
the joys and sense of responsibility they get from
their relationships with pets.
6.
Research
"I
hope the medications can hold off the disease long
enough for a cure to be found."
"My
real hope is that a cure is here in time for my children."
- The
Alzheimer Society is a leading funder of Alzheimer
research in Canada, committing nearly $2 million in
2001-2002. Talk to some of the Alzheimer Society-funded
researchers. Learn what they are doing to find a cause
and cure for Alzheimer's disease and to improve Alzheimer
diagnosis, treatment and care.
- See
the Alzheimer Society's Research Sheet which presents
an overview of the current state of Alzheimer research
in Canada.
- See
the Alzheimer Society's new booklet, Alzheimer Society
Research Program: The key to a cure.
- Check
the research section of
the Society's Web site at www.alzheimer.ca.
- What
are the benefits and drawbacks of participation in
Alzheimer research? Find out what the Alzheimer Society's ethical
guidelines recommend. Talk to an expert who can
speak to the issues.
All
information is available in print from the Alzheimer
Society or at www.alzheimer.ca.
Back
to the Media Kit introduction page.
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