On August 6 at 10 p.m., a frantic Ilene Basdeo called York Regional Police to report her mother, 82, who suffered from Alzheimer’s, was missing from the family’s home.
Six hours later, OPP officers received a call about an elderly woman walking south along Highway 400. When officers arrived on the scene, they found Chandrowtie Basdeo lying on the ground. She had been struck dead by a car that didn’t stop.
Chandrowtie had wandered seven kilometres from her home in Vaughan, Ont.
“More home care is needed for these patients, full days if possible not one hour per day, especially if the individual does do not know what they’re doing sometimes, ” said Ilene Basdeo. “Most of the time the children of these seniors have to work full time, so if the government will provide more care it will help a great deal.”
Her mother, like approximately 780,000 other Canadians, suffered from a form of dementia. The woman liked to take long walks, early in the morning, although her daughter insists someone was always keeping an eye on her.
Although Chandrowtie Basdeo’s experience with Alzheimer’s ended in tragedy, her wandering is not unique.
The numbers don’t surprise Const.Victor Kwong, media relations director for the Toronto Police Services, who suspects those numbers will continue to rise.
Toronto Observer has learned that Toronto’s 9-1-1 emergency service receives from five to seven calls a day for missing elderly people with dementia or dementia-related illnesses, responding to an average of 1,200 calls for missing dementia patients in 2013 in Toronto alone. Most are found within two to four hours. In Durham Region, the police force has received 159 calls so far this year asking for help with dementia or Alzheimer’s patients. Police in York Region fielded 168 calls last year related to missing seniors with dementia.
“In 2011, the baby boom generation reached their senior years so they became 65. So now we have got this huge boom of population that is coming into society with a one in five chance of having Alzheimer’s or some type of dementia,” Kwong said.
The Toronto police are dealing with the rise in numbers.
“We have a partnership with the Alzheimer’s Society. They come and do talks with our officers, who get training on how to deal with and to help find people with Alzheimer’s,” Kwong said.
According to Dr. Robert S. Hopkins, the number of people with Alzheimer’s and dementia-related illnesses in Ontario will climb steadily over the next 20 years. Hopkins, a geriatric neuropsychologist at Providence Mental Health Service in Kingston, Ont., authored a study in 2010 that is often cited and quoted by both the Toronto police and the Alzheimer’s Society of Canada.
By 2031, he projected 1.4 million Canadians will have Alzheimer’s and related dementias.
(source: Statistics Canada.)
“The study was the first time that the Alzheimer’s Society had any information for future needs,” Hopkins said. “It was very difficult to get accurate information back then because people just saw some of the symptoms as symptoms of simply getting old. Defining Alzheimer’s and its effects was the first step.”
Hopkins was surprised that his seminal study on Alzheimer’s and dementia is still cited by the Toronto Police Services (TPS) in its report Planning for the Future.
“I have never been approached by any level of government to provide suggestions,” Hopkins said. “I have never been approached by an level of government, which is surprising because I was an Ontario civil servant at the beginning of this study. Why wouldn’t anyone ask for follow ups or expansions on the study?”
On Oct. 1, federal Minister of Health Rona Ambrose announced Ottawa is in the “early stages” of developing a national strategy for dementia. The announcement comes on the heels of a pledge to give $31.5 million to research into Alzheimer’s and other dementia-related illnesses.
Although the Canadian Institute for Health Resources, a division of the federal government, refers to itself as a “leader in dementia research”, Canada has been criticized as being the only G7 country that has no national strategy for dementia.
“From a public policy standpoint, however important this issue is right now, and I think it is, it may only grow in importance,” said Bruce Rhodes, a Richmond Hill, Ont., resident who cares full time for his wife.
Rhodes’ wife, Liz, 57, a former corporate finance professor for 28 years, is no longer able to work. Liz has been diagnosed with behaviour-variant frontal temporal dementia. She still lives at home, with her husband and their teenaged son.
“In a nutshell, and this is very unfortunate, but Liz, for the past several years, has behaved like an uninhibited six-year-old child,” he explained. “I have to treat her as such which is a challenge given this used to be my brilliant wife with her PhD with whom I could have intellectual conversations, and now she’s my little daughter who’s not only never going to grow up but is only going to deteriorate further.”
This “childlike” behaviour is a symptom that caregivers often refer to, when speaking about their loved ones and the challenges of keeping them safe, according to Dr. Sanjeev Kumar, a geriatric neuropsychologist at the Centre for Addiction and Mental Health in Toronto.
He explains that this behaviour is a direct result of the parts of the brain that are compromised by dementia-related illnesses.
“The areas of the brain which are critical for memory, such as the hippocampus, are affected and that’s what impacts the function of a person’s ability to carry on with the activities of everyday life,” Kumar said.
Although Liz is still in the early stages of the disease, Rhodes knows that the day will come when he will have to consider getting professional help.
“It’s a very tough decision and I presume I will come to the day in the future when I have to decide if or when to put my wife into third party care,” lamented Rhodes.
It can cost thousands of dollars per month for a long-term care facility, and for many people, the decision to seek help outside of the family depends mainly on financial means.
“I know a number of people who stuck it out too long being the caregiver,” Rhodes said. “Some families just don’t have the money, so it’s very unfortunate that they don’t have the choice.”
This was certainly true for Ilene Basdeo. who works full time and also took care of her late mother. And there was the cultural aspect: her mother, originally from Guyana, had eight children, who may have been reluctant to place the woman in a long-term care home.
That’s something Enez Pienkowska can completely understand.
Pienkowska, 20, is a Seneca college student, who takes care of her 65 year-old mother, Danuta, who has early-onset Alzheimer’s.
“Coming from a large family growing up, the idea of putting your family member in a home is just, I don’t know, something we’d never consider doing,” Pienkowska said.
The student rises when it’s still dark to prepare meals, tidy the house and make sure her mother has everything she needs before she heads off to classes for the day.
Even seeking care from outside of the home for her mother, a Polish-Canadian, is not something Pienkowska can envision.
“She doesn’t feel really comfortable having people over all the time and a lot of it is just language barrier too,” said Pienkowska. “The language barrier coming from being Polish, there aren’t many people who work in that profession to speak the language so that’s another issue we deal with sometimes.”
While many caregivers struggle financially and emotionally to look after their loved ones at home, as the neurological disease progresses, it becomes more and more difficult for them to be the sole caregivers.
Which is where Elizabeth Davison, day program manager at Providence Healthcare in Toronto, comes in. She advocates a program that she believes helps both dementia sufferers and their caregivers.
“If the caregiver doesn’t take care of themselves that can be disastrous. The caregivers really have to take care of themselves, so they can be a good caregiver for their loved one,” she said.
Opened in 1995, Providence Healthcare allows for caregivers to take a break from their responsibilities. It offers an adult day program with flexible hours and provides caregiver relief.
“They can run errands, they can go shopping, they can go home and just relax; anything they need to do to get that break.” Davison said.
Anyone living in the Greater Toronto Area with an irreversible dementia can attend the program and at a cost of $20 for the 10-hour program, Davison sees it as both a great financial and cultural alternative for those reluctant to put their loved ones in a full-time dementia facility.
On the other side of the bank account, is newly-opened One Kenton, a long-term care facility located in North Toronto. Officials have noticed a spike in the number of people seeking help for dementia and Alzheimer’s related illnesses.
“We have only been open for ten months now and we are already 40 per cent full,” said Robert Walker, communications director for One Kenton.
Unlike other long-term care facilities, One Kenton is specifically constructed and developed for dementia patients.
The residents all wear sensors and their movements are tracked 24 hours a day; greatly reducing the threat of injury or missing elderly due to wandering.
The halls are equipped with security monitors, and special tracking sensors, which show security personnel where the patient is at all times.
At $7,500 a month, One Kenton is not an option for most people, but technology does provide other options.
Both York Regional Police and the Toronto Police Services are advocates of tracking devices.
The York Regional Police is employing a radio tracking device program known as Project Lifesaver.
Those who are part of the program, which costs $300 and $20 a month to replace the battery, wear a wristband that has a radio frequency that can be easily tracked by police. Right now, registration is fewer than 50 clients.
The Alzheimer’s Society, in partnership with MedicAlert, also provides a solution to wandering through a program called Safely Home.
Designed specifically for Alzheimer’s and dementia sufferers, with a cost of $60 a year or $5 a month, Safely Home uses a blue MedicAlert bracelet that provides police with all the information they need to know about the missing person and offers caregivers a 24-hour hotline to call.
“The program was designed for first responders to quickly access a comprehensive record of the wandering person,” said Lara Morales, MedicAlert operations manager in Toronto. “It’s also a tool for the community: if you see a wandering person with a bracelet…call the hotline number on the bracelet and we will quickly make sure the person is returned home safely.”
Currently 5,058 blue bracelets are being used in Canada. Registration has doubled since 2013.
Some families don’t like the idea of putting tracking devices on people who suffer from Alzheimer’s and dementia-related illnesses saying it infringes on privacy; others see it as a necessary aid in tracking down their loved ones, and keeping them safe.
“This is not a person who has cognitive abilities, “ Kwong said. “When you think about it in that context I would much rather my spouse, my parent is tracked by GPS and forget about privacy. I want to know that this person is found if they ever wander.”
Should Ottawa consider making these devices mandatory for all dementia patients and should governments be covering the costs?
According to Christine Elliot, the Conservative MPP for Whitby–Oshawa, who co-sponsored a bill in 2013 called the Alzheimer’s Advisory Council Act, Bill 54, the government is not doing enough.
“Given the statistics related to the tsunami of Alzheimer’s that’s coming at us, we need to have a coordinated strategy in order to be able to deal with it,” said Elliot, who is currently running to become leader of the Ontario PC party.
For Ilene Basdeo, a government-funded GPS tracking device could have meant the difference between her mother’s life and death. It’s something she lives with every day since her mother was killed.
“The government needs to do a lot more for our seniors,” she said.
While there are some provisions under the Canada Pension Plan that Rhodes is now using to help the family cope financially with his wife’s illness, he suggests more needs to be done by government to help Canadian caregivers and their families.
“In the same way when you’re working and you have your T4 income and they take off income tax and they take off unemployment insurance and they take off CPP, it may prove to be prudent down the road for the government to do a deduction for mandatory disability insurance,” he said, explaining that while his wife’s university had this program, other caregivers he knows are “working three part time jobs” to make ends meet while caring for their loved one with dementia.
“If we did not have that coverage financially we would be in deep trouble right now as a family. We would most likely be selling our house and eating macaroni and cheese every night.”
For Pienkowska, who was interviewed before the federal health minister’s announcement, whatever steps the government takes, they must not just focus on research.
“When there’s people who have it, severely it affects their families completely and themselves, too. If the government could help in any way that’d be great. Anything financial is a really big thing. Whatever the person needs and if they can have a way of providing that, that’d be great,” she said.