The younger face of dementia: Ottawa man shares wife's battle with the disease
Published Monday, January 6, 2014 10:03PM EST
Last Updated Monday, January 6, 2014 10:30PM EST
Inside a locked ward of an Ottawa nursing home, 44-year-old Lisa Dineen stands out among the elderly residents.
But just like them, she suffers from dementia.
Among an estimated 750,000 Canadians who live with some form of cognitive impairment, Dineen is the younger face of a growing health crisis.
A year ago, the mother of three was diagnosed with frontotemporal dementia, or FTD, a devastating brain disorder with no known cure.
Dineen’s case was so severe that within two months of her diagnosis, she had to be placed in the secure unit of a long-term care facility. Her husband, Matthew Dineen, needs a security pass to visit her.
“I was not aware that someone that young could be struck with dementia,” he told CTV News. “I thought it was an elderly person’s disease.”
He said his wife’s personality began changing about three years ago. A highly educated woman, Dineen became disorganized and started exhibiting strange and dangerous behaviours that threatened her family’s safety.
“Of course, I was scared,” Matthew Dineen said. “You don’t know what each day is going to bring with it.”
FTD destroys regions of the brain that govern reasoning and judgment. It’s a type of dementia seen among patients in their 40s and 50s, affecting up to 37,000 people across Canada.
Doctors say there may be many more people with FTD who were never properly diagnosed. Their symptoms can often be dismissed as signs of a midlife crisis.
Dr. Carmela Tartaglia, a neurologist at the Toronto Western Hospital whose research focuses on frontotemporal dementia, said the disease doesn’t just destroy patients’ cognitive and reasoning abilities.
“We have people who get a divorce … their families leave them because some of them start acting very inappropriately,” she said.
“They don’t understand that it is a brain disease, they don’t understand that they are not doing it on purpose.”
Tartaglia said many people with FTD have demanding jobs and high-level positions, so when they start making poor decisions it can lead to serious workplace consequences, including bankruptcy.
Dineen’s husband said he decided to go public with his wife’s story in an effort to urge other families to seek a quick diagnosis if they suspect a loved one has FTD.
He also supports calls for a national dementia strategy, saying health care professionals must be ready to deal with the growing number of dementia patients of all ages.
By 2031, the number of people in Canada with some type of cognitive impairment, including dementia, is expected to rise to over 1.4 million.
Tartaglia said there are currently few facilities suited for dementia patients who are younger than 65.
“These people realize they are in places where everybody is about 80 and they don’t fit in,” she said.
Is your loved one showing signs of FTD?
According to the Alzheimer Society of Canada, symptoms of frontotemporal dementia include:
- Behavioural changes such as loss of inhibition, acting inappropriately in social settings, decreased energy and change in personality
- Speech problems, which can range from difficulty in finding the right words to total loss of speech
- Unlike Alzheimer’s disease, a person with early-stage FTD usually doesn’t have memory or time-orientation problems
With a report by CTV News' medical specialist Avis Favaro and producer Elizabeth St. Philip