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People with dementia 'want to be heard,' expert says

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.

"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.