Women make up 72 per cent of Alzheimer’s patients in Canada and nearly the same percentage give up years of their lives as family caregivers, the Alzheimer’s Society says as it launches a new awareness campaign.
Alzheimer’s is the most common type of dementia, a condition that affects 747,000 Canadians. Age is a significant risk factor for dementia, and because women live longer than men, there are more of them suffering from symptoms that include memory loss, impaired judgment, and personality and behavioural changes.
Alzheimer’s has no known cause, and there is no cure. Medications can only manage symptoms, but do not impact disease progression.
For Alzheimer Awareness Month, the Alzheimer’s Society of Canada is launching a national campaign called “The 72%” to inform women in their forties and older about the 10 warning signs of the disease.
The Society also notes that the disease impacts women in another devastating way. Women make up about 70 per cent of family caregivers, who are often caring for a loved one while working and raising their own families.
“With this campaign, we’re making Alzheimer’s disease a women’s issue,” Alzheimer’s Society CEO Mimi Lowi-Young said in a statement.
“Women lead busy, hectic lives, often paying the price with their own health and well-being. We’re asking them to invest time in understanding the warning signs.”
The Society has developed literature for “The 72%” campaign to help women identify the risk factors and warning signs.
Caron Leid of Brampton, Ont., knows all too well the difficulties of being a caregiver. Leid’s mother, Marlene, was diagnosed with Alzheimer’s in 2000 at the age of 57.
“(The doctor) gave her a mini mental exam and she didn’t do well, and he just said she was at the beginning stages of Alzheimer’s. I didn’t know anything about Alzheimer’s so I said ‘okay,’” Leid told CTV News.
“Until I Googled it. When it said ‘no cure,’ then I started to panic.”
Marlene, a former registered nurse, now cannot do anything by herself, and she cannot speak. Leid must often guess what her mother’s needs are, including whether she is in any pain.
“It has been a roller coaster ride, and you don’t know what that particular day will bring,” Leid says.
In the beginning, all caregiving duties fell on her rather than her brother, and little has changed.
Leid is raising a son of her own, and her mother’s disease has taken such a toll on her marriage that she is now separated from her husband. She also feels alienated from some of her friends, who don’t understand what she is going through.
Leid has written a book about her experience called “Alzheimer's: What They Forget to Tell You - A Personal Journey.”
In it, Leid tells her own story, and also shares much of what she has learned from her experience to help others in her position.
“It is very difficult and I don’t think my family per say understand that it is a huge sacrifice, because I basically gave up 14 years of my life,” Leid says.
Leid herself is now at a high risk of developing dementia because of her family history and the stress of caring for her mother.
“I was supposed to go to the memory clinic…and I don't want to do the test, because I don't really want to know.”
The Alzheimer’s Society projects that in less than 20 years, 1.4 million Canadians will be living with dementia. For each person diagnosed, the Society says, “there are many who are directly affected as caregivers.”
Annual health care costs associated with dementia are expected to increase from $33 billion today to $293 billion by 2040, the Society says.
Meanwhile, family caregivers provide millions more in unpaid hours caring for loved ones. In 2011, the Society estimates, caregivers spent 444 million unpaid hours, representing about $11 billion in lost income.
Because patients can live with dementia for years, caregivers can burn out, be forced to quit their jobs, or develop health problems of their own related to stress and depression.
Alzheimer’s is a disease that affects the whole family, Leid says.
“There is no hope for Alzheimer’s,” she says. “You have to learn to live with it. Everybody. The whole family has to learn to live with it.”
With a report from CTV’s medical specialist Avis Favaro and producer Elizabeth St. Philip
