TORONTO – For families caring for a loved one with dementia, it can be one of the most frightening experiences of contending with the disease: discovering that the person has wandered from home and realizing they may have no idea how to get back.
About three in every five Canadians with dementia will go missing at least once during the course of their illness, says the Alzheimer Society of Ontario, which launched a multilingual program Wednesday aimed at helping to keep people safe.
Called Finding Your Way, the program outlines practical steps to prevent and deal with wandering, directed at people diagnosed with Alzheimer’s or other dementias, their family caregivers and the public.
The issue is not a trivial one, said David Harvey, head of public policy and program initiatives for the Alzheimer Society.
“If you get lost and you are lost for more than a day, then your chances of survival are very slim,” said Harvey, adding that half of those who go missing for at least 24 hours risk serious injury or death.
That was the case two years ago when a 66-year-old woman wandered away from her Toronto home on a bone-chilling January night. Her cries of distress in the early-morning hours went unheeded by neighbours and she was later discovered frozen to death on the pavement just a block from her home.
Police found “clawing” marks on the screen door of a house and car near where the woman was found.
Harvey said such deaths can be prevented.
When a person is first diagnosed with dementia, they can take steps to protect themselves if they become confused and find themselves lost as the disease progresses. That includes having a friend or family member along when going out, taking a cellphone, wearing a MedicAlert bracelet, and carrying identification with the name of an emergency contact person.
“Leave your picture and a description of yourself with someone you trust — something that can be passed on to searchers if you are not found by someone you know,” the society also advises.
Family caregivers should also have a plan, but that doesn’t mean “keeping people with dementia locked up,” said Harvey. “Recognize that a person with dementia shouldn’t become trapped at home, that people need to be active and to be able to get out.
“So families need to be able to plan to enable people with dementia who might wander to walk out in the community, and that means either themselves going with them or finding a friend to go with them.”
Caregivers should also have an information sheet listing their loved one’s age, height, weight and other personal statistics, along with a recent photo, which can be given to police should the person go missing.
Gweneth Gowanlock of Ottawa, whose 78-year-old husband Bob has frontotemporal dementia, has had a system in place to keep him safe since an incident a few years ago, earlier in the disease process, when he went out to do an errand in the car and didn’t return when expected.
“Hours went by and he didn’t come back, and he didn’t come back. And four hours went by and I was getting a little frantic, because it was so unlike him,” said Gowanlock of her husband, an Air Force fighter jet navigator for 35 years who then worked on emergency preparedness for the federal government before retiring in 2004.
“And I was ready to call the police. And at the moment I had my hand on the phone, he came home,” said Gowanlock, 66, a retired federal civil servant.
“He said he just couldn’t find his way. He drove on the Queensway, a fast highway through the city, and he drove back and forth from east to west, time and time again, trying to figure out where he was and how to get off.”
Gowanlock said her husband had asked people for directions, but he couldn’t process the information — a symptom of the disease along with memory loss and a progressively diminished ability to read, write and speak.
“He finally got home and I know he was scared. And I was really scared,” she recalled.
“In a way, our life changed that day because I knew we couldn’t try to carry on the way we were normally. We had to take some precautions.”
Today, Gowanlock has support workers who come in to look after Bob when she goes out, their condo has a deadbolt on the inside to prevent his leaving on his own, and she goes with him for walks when he wants to get outdoors.
The neighbours know to keep an eye on him should he somehow leave the building on his own, and she makes sure he carries identification in his wallet with an emergency contact number when he attends an adult day-care program during the week.
“We’re a little more fortunate than some people because we haven’t had a life and death, perilous situation — but we could,” she said.
“I’ve shuddered to this day about the driving incident because he could have been killed, he could have hurt somebody else. Any number of things could have happened. It was just awful.”
Harvey said the public can also extend a helping hand to people with dementia who may have wandered away from home and become disoriented and lost.
“If, for example, you see somebody outside in cold weather and they’re not properly dressed or if the person comes up to you and starts talking to you or repeatedly asking questions, these might all be signs that the person has dementia,” he said.
“In which case, we’re asking people to try and keep that person within their field of vision, while at the same time contacting the police, so the police can come and help them by taking the person back home.”
Harvey said the Alzheimer Society is working with the Ontario Police College to train officers on the effects of dementia and the best ways of handling people with the disease.