Every once in a while, our minds dip into the past, sifting through the vast files of our temporal lobes for the memories and moments that shaped our early days. When I think of my grandmother, I think of a hot summer afternoon, the air so thick the kitchen walls seemed to melt onto the linoleum floor. I remember the crackling noise eggs make in a frying pan, the red of ripe tomatoes perspiring against fresh basil. She stared emptily at the vacant wall before her, glancing at her plate and eating reflexively, her tight white curls matted to her head. Midday came and went. Rimmed red, her glistening green eyes pleaded for help. A flurry of words escaped her mouth, her arms flailed about. She had not eaten, she said, she was left to starve. I didn’t know then not to feel a ripple of burning hurt freezing my insides. I didn’t know then that the woman who stood before me was dying while living, her brain being ravaged by synaptic failure. All I knew was that a strong woman who had borne a brood of children that went on to have their own children barely knew her own name, much less her own legacy. In memoriam, I travel through my memories into the present day. Why did my grandmother, a woman so virtuous in spirit, get this mental illness?
Killing the brains of our grandmothers and grandfathers, our mothers and fathers, our brothers and sisters, Alzheimer’s seems not to forget our loved ones. While every case takes hold differently for each individual diagnosed, many symptoms are common and steadily progress. The condition is permanent. My grandmother’s private purgatory burned with some of the hallmark signs of this fatal brain disorder: forgetfulness that disrupted her daily life, an inability to complete daily tasks, visual and spatial confusion, a struggle with vocabulary.
More than 500,000 Canadians live with a diagnosis of dementia due to Alzheimer’s disease. The most common and aggressive form of dementia (a cognitive disorder characterized by memory, executive functioning and changes in mood), Alzheimer’s disease is expected to increase dramatically as baby boomers approach their retirement years. According to Statistics Canada, all baby boomers in Canada will reach age 65 between 2010 and 2031. “With the aging of all societies around the world, the biggest risk factor with Alzheimer’s disease is age,” says Dr. Ronald Petersen, director of the Alzheimer’s Disease Research Center (ADRC) at Mayo Clinic in the U.S. “As baby boomers now reach age 65 – those born in 1946 – vastly increased numbers of individuals are at risk for Alzheimer’s disease, solely by virtue of age.” Dubbed the “Silver Tsunami,” Alzheimer’s is an impending crisis that is a cause of concern for leading global experts. “This is just the beginning of what’s going to be a tidal wave of individuals who may develop Alzheimer’s disease,” says Dr. Petersen.
Rising Tide: The Impact of Dementia in Canada, a recent report by the Alzheimer Society (funded by Pfizer Canada, Health Canada, Public Health Agency of Canada, Canadian Institutes of Health Research and Rx&D), predicts that 1.1 million Canadians (2.8 per cent of the population) will live with dementia by 2038. To put it in perspective, one person will be diagnosed with Alzheimer’s or related dementia every two minutes. “There are other ways to devastate populations but we’re heading into some realities … this is sort of now, as we move towards say 20 per cent of the population being over the age of 65. Symbolically, this is the boomer era of senior citizenship,” says Dr. Sandra Black, Brill chair in neurology at the University of Toronto, Sunnybrook Health Sciences Centre. “Even right now, more and more people know someone with Alzheimer’s … it’s going to be around, causing more and more challenge to our ability to take care of people. I think it is something that does require a concerted strategy of both research and care delivery in a way that will allow us to cope and find ways of preventing it,” adds Dr. Black.
During this time, the economic burden of dementia in Canada will rise from $15 billion in 2008 to $153 billion in 2038. Unlike Australia, Norway, the Netherlands, France, Scotland and the United Kingdom, Canada has yet to make Alzheimer’s a countrywide priority by creating a national strategy on dementia. The U.S. recently passed the National Alzheimer’s Project Act into law. “I think it’s absolutely critical; the numbers are totally frightening,” says Dr. Black, who is part of The Canadian Dementia Action Network (CDAN), a group dedicated to eradicating Alzheimer’s and related dementias. “I feel strongly that Canada needs to invest more in Alzheimer’s research, to find cures and new approaches to treatment.” Since 2006, the Canadian government has invested $88 million towards Alzheimer’s, and is pursuing a national strategy.
Knowledge of Alzheimer’s has grown significantly over the past two decades. Current medications and early detection help to treat and steady the progression of this neurodegenerative disorder. Experts of the disease hope for a cure but, on the immediate horizon, remain pragmatic. A solution to the underlying course of the disease has yet to be uncovered, yet recent advances in biomarkers have made it possible to detect the disease in the living brain. This extends a hand in early diagnosis. MRI imaging can now reveal and measure a brain shrinking from Alzheimer’s, and “image” in a live brain the protein believed to be responsible for Alzheimer’s: beta amyloid (A-beta). While this protein is present in “normal” brains, higher quantities usually signal a case of dementia. “The key problem in Alzheimer’s disease is that abnormally high amounts of A-beta accumulate in the brain, overwhelming the enzymes and other molecules whose job it is to clear away,” writes Dr. Jack Diamond in his published study entitled A Report on Alzheimer’s Disease and Current Research. When A-beta molecules bunch together, they form tiny toxic collections called oligomers. From this, dense deposits, referred to as amyloid plaques, form and proliferate throughout the brain. Neurons extinguish when synapses stop firing messages to them. “Many researchers believe that the amyloid deposits not only make the nerve cells sick, but they somehow promote the development of tangles, and it is probably these that actually kill the nerve cells,” writes Dr. Diamond. Normal nerve cells contain tangles, which are made of a protein called tau. In Alzheimer’s, tangles thicken and impair nerve function. Plaques and tangles are the defining characteristics of Alzheimer’s disease. The reason why those living with Alzheimer’s have problems remembering recent information is because part of the brain that encodes information is impaired by the disease process. It takes longer for the disease to disconnect distant memory, as those have already been stored in the recesses of our brain.
According to the Public Health Agency of Canada’s website, Alzheimer’s is categorized into three stages: early, middle and late. Symptoms vary and develop quickly. Dr. René Desautels, medical chief of the geriatric psychiatry program at the Douglas Mental Health University Institute, explains that additional mental illness symptoms such as anxiety and depression can also occur in a person living with Alzheimer’s. Psychosis commonly develops later.
Those living with early-stage Alzheimer’s require minor assistance with daily routines. Impaired long-term memory and changes in mood may occur in middle-stage patients. In the late-stage form of the disease, the quality of life for a person living with Alzheimer’s is heavily contingent on caregivers. “The important point to make about Alzheimer’s disease is that it’s actually incubating in the brain gradually, slowly, over many years,” says Dr. Black. All that was left of my grandmother were bits and pieces of her identity, stolen by this brain killer.
A common misconception with Alzheimer’s is that once a person is diagnosed, his or her life is over. “Quite a number of things can be done in terms of treatment,” says Dr. Desautels, who recommends geriatric psychiatry for those diagnosed with Alzheimer’s in their later years.
For caregiver Julie Foley, 59, Alzheimer’s has resulted in several yet mild modifications to the life she shares with her spouse, Lowell Jenkins. He was diagnosed with early-stage Alzheimer’s at 73. While Jenkins is cognizant of his condition and continues to volunteer his time at a rehabilitation hospital in Toronto, he is no longer able to drive or ride the TTC. A friend or family member keeps him company when Foley, a social worker, attends business trips. To appease his short-term memory, she’ll draft a note in the daily diary they use to remind him of her whereabouts. “There’s lots of need for repetition and reminders of what’s going on today, what day it is, what time I’ll be home.” By the time her yoga class is done, he’ll have read her entry. However, there have been times of confusion, his memory loss getting in the way. “There’s been many adjustments,” she says. “He often needs help dressing – getting his sweaters on the right way – but he’s perfectly able handling his personal hygiene. It’s important to know where help is needed and where people are still quite able to function because it’s important not to treat the person
like they’re totally incapable because that’s not true.” However mild her husband’s case is, Foley’s voice catches. “There are times when the impact – particularly the emotional impact – just suddenly can be overwhelming in terms of a real rush of grief and a sense of loss.”
This debilitating, mind-blowing disease may also impact the well-being of caregivers. Up to 50 per cent may suffer from depression, says Dr. Desautels, who is also the medical chief of Moe Levin, a Douglas-specialized unit for treating dementia and neuropsychiatric troubles. Caregivers also face an unprecedented, long-time burden, with Rising Tide predicting caregivers clocking in 756 million hours of informal care in less than 30 years.
Alzheimer’s is often considered the second-most feared disease after cancer. Nothing chills the core more than knowing your most private thoughts, your mind, your memory and experiences can slowly be stripped away by this mental illness. “Once you have the disease … you don’t come back from it – it’s a relentlessly progressive disorder that ultimately takes your life. An unflattering term thrown around, according to Dr. Petersen, is that “there are no Alzheimer’s survivors.”
While there is a five-fold risk of Alzheimer’s developing after age 65, it is important to recognize that the normal part of aging does not include Alzheimer’s. In other words, while age does present the most
significant risk factor, some people in their 40s and 50s have the symptoms
Petersen admits that in the past 10 years, he has seen an increased number of people with Alzheimer’s and people coming in at an earlier age asking, “Is this the beginning of Alzheimer’s?” Startlingly, he reveals that in the early on-set familial form, “there has been people reported in their 20s and 30s with [Alzheimer’s].” In these cases, the disease usually presents itself more aggressively, making it unlikely for a person to live 10 – 20 years with it. There have been instances where Dr. Petersen has diagnosed senior patients with late-stage Alzheimer’s two decades ago and they have managed to battle the condition. “People who are in particularly good health and cared for well into the disease – and for whatever reason in that individual it’s not particularly aggressive – can go on for 20 years.” Other possible risk factors include vascular disease. While a
co-occurrence may occur because they are both age-related, says Dr. Petersen, there are actual shared biological associations between these diseases on a mechanistic basis. The predominant genetic risk factor for late-onset Alzheimer’s is apolipoprotein E (e4). “People who are carriers are more likely to develop Alzheimer’s. It doesn’t mean they are going to get it … and it doesn’t mean that if you don’t have it that you will not get it; it just increases the risk,” says Dr. Petersen. He also mentions that more women are diagnosed with Alzheimer’s, probably because they live further into the age of risk.
The possibility of Alzheimer’s can also increase if it resides in your family history – just like any other inheritable disease. According to the Public Health Agency’s website, “fewer than 10 per cent of Alzheimer’s disease cases show an obvious inheritance pattern; these usually occur before age 60. However, genetics is believed to play some role even in late-onset Alzheimer’s disease.”
A world-leading expert on the disease, Dr. Petersen diagnosed former U.S. President Ronald Reagan in 1994 at the age of 83. The president and his wife, Nancy, were long-time patients of Mayo Clinic. While he can’t comment directly on the president’s condition due to doctor-patient confidentiality, Dr. Petersen explains that upon his diagnosis, there was a “boost in the arm in terms of awareness, and that did lead to some increase in funding in the ’90s, but there’s been a drought of funding since then.”
Dr. Petersen appeared in award-winning journalist Maria Shriver’s stirring four-part documentary series The Alzheimer’s Project (HBO) in 2009. The former first lady of California, Shriver has become a beacon of hope for the families that grapple with the disease’s symptoms. Her father, American statesman and Peace Corps founder Sargent Shriver, battled Alzheimer’s for eight years. Shriver would re-introduce herself as her father’s daughter during every visit. “There’s always that moment when you have to let it sink in that your mother, your father, your grandma, your grandpa, doesn’t know who you are. I don’t think anybody gets to used to that,” says an emotional Shriver in The Alzheimer’s Project’s episode entitled Grandpa, do you know who I am? Her father succumbed to the disease on Jan. 18, 2011. He was 95.
Canada, along with the rest of the world, faces a looming epidemic of dementia. At this time, recognizing the warning signs of the Silver Tsunami is critical. An early diagnosis, heart-healthy diet and an active, intellectually stimulated lifestyle may help alter the expression and strength of the disease. “It was becoming apparent in the months leading up to the diagnosis,” recalls Foley, “when we looked farther behind there were warning signs as long as two years before [the diagnosis].”
According to the World Health Organization (WHO), Alzheimer’s disease affects 18 million people worldwide. This tremulous statistic is projected to nearly double to 34 million by 2025.
Go to www.asmt.org or call 416.322.6560 for information and support group options.
10 WARNING SIGNS*
SIGN 1 Memory loss that affects day-to-day abilities
SIGN 2 Difficulty performing familiar tasks
SIGN 3 Problems with language
SIGN 4 Disorientation in time and space
SIGN 5 Poor or decreased judgment
SIGN 6 Problems with abstract thinking
SIGN 7 Misplacing things
SIGN 8 Changes in mood and behaviour
SIGN 9 Changes in personality
SIGN 10 Loss of initiative
* Provided by the Alzheimer Society of Canada