Oct. 17, 2003
Suzanne Morrison
The Hamilton Spectator
Alzheimer Disease always seems to be about lost hopes and dreams,
but Dr. Christine Jonas-Simpson says it doesn't have to be that
way.
A nurse who believes in respecting and valuing people with the
disease, she is a leader in a new trend in the field of dementia:
the early and continuing involvement of persons with dementia
in decisions about themselves and their future.
Jonas-Simpson says families and caregivers need to see the person
suffering from dementia as a person first.
"And they need to really listen and not silence persons while
they try to enhance their understanding of where they are,"
she said.
Jonas-Simpson said numerous assumptions are made about those with
dementia, such as believing they can't speak for themselves.
Some of her current research involves talking to people with dementia
about their lives. When she describes this work to strangers,
they're often shocked to learn that people with dementia have
the ability to talk.
"People with dementia have a voice and want to be heard.
Whether that voice is spoken through art, or an expression ...
we need to try and understand that and not put them off or silence
them because of the diagnosis," said Jonas-Simpson, a nurse
researcher and director of nursing research at Sunnybrook and
Women's College Health Science Centre. She received her nursing
degree from McMaster University, and a doctorate in nursing science
in Chicago.
She is conducting several research studies with persons living
with dementia.
Jonas-Simpson spoke of these issues in the first Gertrude Cetinski
Lectureship last night at the Burlington Art Centre. The lectureship
was established by the Hamilton and Halton Alzheimer Foundation
to honour Cetinski, the society's former executive director.
In Hamilton and Halton alone, it is estimated one out of eight
individuals over 65 -- or about 10,000 individuals -- suffer from
dementia.
Alzheimer Disease is not a normal part of aging. Symptoms include
having difficulty remembering things, making decisions and performing
tasks.
No one knows the cause and there is no cure.
Elaine Wright of British Columbia proved people with dementia
are far more than empty shells. She climbed Mount Kilimanjaro
in Africa this year.
smorrison@thespec.com
905-526-3474
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