It was a family ritual. Once a week, like clockwork, my paternal grandfather would telephone to berate me for failing to call and visit my grandparents. I would respond with the unimaginative “blame it on too much schoolwork approach,” which rather than appease him, provided him with extra ammunition for his tirade. With time, I stopped tuning in and thanks to the advent of speakerphone, I would place the telephone on the counter and go about my business while letting him ramble to his heart’s content. For as long as I can recall, he never forgot to call and guilt-trip me. Today, he can’t remember my name. If you gave him a telephone, he wouldn’t know what to do with it. My grandfather, Leonid Nekhim, age 81, has Alzheimer’s disease.
The Alzheimer Society of Canada defines Alzheimer’s as a degenerative disease affecting the brain and causing severe damage to an individual’s thinking and memory capabilities. It’s the most prevalent form of dementia (a syndrome comprised of numerous symptoms including the loss of memory, judgment and reasoning, and shifts in mood, behavior and communication skills) and is prevalent among those ages 65 and older.
Walking along the pastel pink halls of Maimonides Geriatric Centre to the third floor, where the patients aren’t allowed to roam about unaccompanied, to my grandfather’s room &- I am shocked every time. In the place of a formerly robust man who worked with his hands in construction and who lifted weights as a pastime, there now sits a frail, sedate individual whose hands tremble as he struggles to lift the fork to his mouth. Once there, he forgets how to use it and puts it back down again. It hurts to watch.
According to the Alzheimer Society of Canada, half a million Canadians suffer from Alzheimer’s or a related dementia (approximately 1 in 11), with 71,000 of them under age 65. This number is estimated to rise by almost 50 per cent in the next five years, and could reach 1 million within 25 years if nothing changes. Women account for nearly three quarters of Canadian Alzheimer’s cases based on the Society’s online statistics. Presently, there is no cure.
For Dr. Serge Gauthier, director of the Alzheimer’s Disease Research Unit at McGill University’s Centre for Studies in Aging and a professor in the Department of Neurology and Neurosurgery, there is a logical explanation for these startling figures.
“It’s just that the number of people over age 65 is increasing because people live longer and there is the baby boomer cohort response,” explained Gauthier.
A 2006 Statistics Canada census indicates baby boomers (people born between 1946-1964), comprise close to one third of the country’s population and the first wave turned 60 in 2006.
“Because we have all these people reaching those ages at the same time, then there are more people with Alzheimer’s,” said Gauthier.
Unfortunately, this means it’s highly likely someone close to us will fall prey to this terrible disease &- if they haven’t already. It might even be you and me, someday.
The silver lining is that between research and baby boomers setting an example for healthy living; the doctor is confident the aforementioned numbers won’t be quite as high. Further, the more we inform ourselves today, says Gauthier, the better equipped we’ll be at delaying or even preventing the onset of Alzheimer’s, as well as at noticing the initial symptoms and helping our loved ones get medical care early &- when it’s more effective. Lastly, we’ll have the necessary coping techniques if the disease hits close to home. Take it from me: if my family and I knew then, half of what we know now, we could’ve avoided a lion’s share of pain, worry and emotional turmoil.
Risk factors and prevention: what we should all know and be doing now
One of the initial thoughts that sped through my mind when I received official news of my grandfather’s diagnosis was: does this mean my father is genetically predisposed to Alzheimer’s? What about me and my sister?
While a family history of Alzheimer’s is certainly a risk factor, Gauthier says one need only really worry if an immediate family member was diagnosed before the age of 60. “Age of onset of the disease matters,” said Gauthier. If you fall into this category, he suggests regular visits to the doctor for close monitoring.
Otherwise, lifestyle and a low level of formal education (below grade seven), are the two major risk factors. The latter explains why Alzheimer’s has been more rampant among women, but Gauthier expects to see a drastic change due to women now attaining higher levels of education than their male counterparts. My grandfather never finished high school.
According to Gauthier, by exercising, eating a balanced diet, avoiding smoking and maintaining a healthy weight and blood pressure, Canadians can realistically postpone Alzheimer’s by five years within the next generation. As students in our 20s or older, this also applies to us, Gauthier stresses.
“Delaying by 10 years would be ideal, because Alzheimer’s would then be delayed to very old age like over 90,” he said. “It’s the same preventative measures for heart attack and cancer. It’s a lifestyle thing.”
Moreover, Gauthier is confident a specialized test will be available in the next couple of years, allowing individuals in their 40s and 50s to get an accurate picture regarding their risk for Alzheimer’s. Doctors will then be able to provide proportional advice, primarily related to lifestyle changes. “It’s a bit like the treadmill for your heart attack risk, it will hopefully be a memory test you can do with a nurse of a family doctor,” said Gauthier.
However, Gauthier is nervous that Canada isn’t prepared to deal with prevention, despite the strides in research. “I’m concerned with the lack of family doctors,” he said. “We need to find alternative ways to reach people.”
Gauthier’s proposed solution is an Internet based Alzheimer’s test giving people the option to self-screen. Only if they hit a certain score, should they see a family doctor. Another option is instituting specialized memory clinics run by family doctors.
Reading the signs: catching Alzheimer’s in the early stages
In retrospect, one of the saddest aspects of this ordeal is knowing I failed to notice what was staring me right in the face all along. Each time I put the receiver down to avoid hearing him ramble, what he was saying was becoming progressively more incoherent. And all those occasions at the dinner table, where, so accustomed to his nonsensical diatribes, we continued to brush them off as a side effect of old age &- even after they had become pure gibberish.
Before we knew it, my grandfather couldn’t find his way back home and the police had to interfere. Within weeks, he was wearing an identification bracelet and since eight months ago, he’s been in a long-term care facility under heavy surveillance. Maybe he was trying to say something important the entire time. No one will ever know.
Disorientated perceptions of time and place, problems with language and abstract thinking are just a few of the Alzheimer’s warning signs to look out for, based on the Alzheimer Society of Canada’s website. Others include: memory loss that impacts daily functioning, difficulty performing familiar tasks, poor or decreased judgment, misplacing things and changes in personality. If you observe any of these symptoms, the Society recommends advising the individual at risk to see their doctor immediately. Medications and others forms of stabilizing treatments are more effective if begun in the earlier stages. This way, individuals might also be able to remain at home longer.
Tamara Sussman, an assistant professor at McGill University’s School of Social Work, which works with Alzheimer’s patients and their families, says in the initial stages of the disease, people will often notice they’re missing steps in certain processes. For instance, they’ll make a cake, and realize they omitted the eggs and they’ll get scared.
“You can be really quite aware when you have early stages of Alzheimer’s disease about what your deficits are and be taught ways of compensating or rely on someone else,” said Sussman.
She often encounters patients who want their loved ones to be their memory aides and to help them refocus when they’ve veered off course. Others, like my grandfather, will be more reluctant to accept help, which Susseman says is normal and not a signal to give up.
When tragedy strikes: be prepared and be positive
When my grandfather became one of many about two years ago, no one had any clue how to react or what to expect &- all we know was our lives were permanently altered. Teresa Anunza, a trained psychologist and the coordinator for intake and referrals at the Alzheimer Society of Montreal, says people generally don’t know much about the disease, and often they’re misinformed.
“Until recently, people didn’t really want to talk about it. It was kept in the family and nobody spoke about it,” said Anunza. “The more you speak about it, the more awareness there is and the more services we can make available.”
Anunza encourages patients, along with their caregivers and loved ones to take advantage of the free support groups offered by the Alzheimer Society of Montreal.
“It’s a frightening disease because you’re losing a part of yourself all the time. You’re losing your memories and basically you are your memories,” said Anunza.
In terms of spending time with Alzheimer’s patients, Anunza’s advice is to always be positive and focus on what they’re still able to do rather than on their shortcomings. This entails controlling the urge to correct them. As a social worker, Sussman reminds people to bear in mind how sensitive Alzheimer’s patients generally are.
“Don’t talk about them with somebody else in the room, which often people do … don’t overlook trying to include them in a conversation they’re capable of being included in,” she said.
I’ve lost count of how often I’ve been guilty of all of the above, or witnessed them occur.
Working in the field, Sussman frequently sees people make the mistake of thinking a person is totally lost when they have Alzheimer’s, when in fact they’re still there. She also cautions against blaming erratic and crazy behaviors on the illness.
“People are starting to talk about purposeful behaviors. Behaviors are a way of a person trying to communicate something that they can’t communicate as they used to so they communicate it in a different way,” said Sussman.
Doing your part: volunteering and getting involved
Everyday, from 7 a.m. until 7 p.m., my grandmother is by her husband’s side. Regardless of the fact there are paid employees caring for him &- in her mind, no one can do a better job than his wife. She brings him home-cooked meals, takes him on walks and watches him forget her more and more each day. It would be romantic if it weren’t so heartbreaking.
At 77, she is neither physically nor emotionally capable of handing the load she puts on herself. She has chronic back pain and suffers from exhaustion. A combination of the two landed her in the emergency room for several days last month. No matter what we say to her our words fall on deaf ears.
“The first thing we tell a caregiver is whether the person is at home or is in the hospital. The first thing is to look after yourself, so you can continue looking after the person with the right amount of energy,” explained Anunza.
The greatest gift the family can give, says Anunza, is helping the caregiver relax. This doesn’t mean an hour or two, adds Sussman, but six to eight hours. Anunza urges all individuals, even those without familial ties to Alzhiemer’s, to volunteer their time and allow caregivers to have breaks. The Alzheimer Society of Montreal has numerous volunteering opportunities, such as helping out during music or art therapy sessions, or simply by sitting and conversing with patients.
Sussman agrees, saying while the government funds basic medical services, there is a huge hole where social recreational services ought to be. If such services were more common and accessible, Sussman thinks the burden on families would be diminished and they’d be able to keep Alzheimer’s patients at home much longer.
“People definitely need services in the community more, and they need to be able to get hours of service, not just to do tasks like give my family member a bath or prepare a meal, they need someone there just socializing with people with Alzheimer’s or taking them on walks, because their social network gets depleted,” said Sussman.
Sussman also stresses the importance of volunteering, saying in the meantime, communities have to rally together and help families in ways the government isn’t.
My grandmother resisted sending my grandfather to a home with every fiber in her body. But, between a lack of social services and the disease becoming progressively worse &- she burnt out. My family helped as best we could.
“I have family members who say they’re alone in this and in some ways they really are,” said Sussman.
Some Shocking Statistics
500,000 Canadians currently have Alzheimer’s disease or a related dementia. 71,000 of them are under age 65.
50 per cent more Canadians could be diagnosed with Alzheimer’s disease or a related dementia in only 5 years.
1 million or more Canadians will have Alzheimer’s disease, or a related dementia within 25 years. Meaning that in one generation, the amount of Canadians with Alzheimer’s will more than double.
Today, women make up almost three-quarters of Canadians with Alzheimer’s disease.
Alzheimer’s disease is the leading form of dementia. It represents 64 per cent of all dementias. This is predicted to increase to 68 per cent by 2034.
Women represent 62 per cent of all cases of dementia.
Figures taken from: Alzheimer Society of Canada
Approximately 105,600 individuals over the age of 65 have Alzheimer’s or related diseases.
Two-thirds of Alzheimer’s patients over the age of 65 are women and most caregivers are also women.
More than 187,500 people in Quebec are expected to have Alzheimer’s or a related dementia by 2031.
Over 30,000 families are affected by Alzheimer’s or related diseases in Montreal alone.
Figures taken from: Alzheimer Society of Montreal