DEMENTIA comes quietly, its clues too often missed
The earlier the symptoms are identified, the better, yet most people wave off little changes
Revealing his thoughts to his writers’ circle last August, Harvey Berger wrote: “It isn’t every year a man celebrates his 80th birthday. How does it feel to be 80? I cannot really complain. I think my marbles are still all in a row. None litters the floor. Oh, there is some litter, but no marbles.”
Berger, whose Alzheimer’s disease, the most common form of dementia, was diagnosed when he was 76, is no slouch. He rattles off where he gets to: art class at the Alzheimer Soci- ety of Montreal offices, a Tuesday writers’ circle and a Friday support group at the Cummings Jewish Centre for Seniors, cinemas, museums and the three libraries he frequents. But more important than where he gets to is why he’s there.
“Right now, the name of the game is brain activity,” Berger says. “I’m incredibly blessed and count myself lucky I can do what I do. But then, I was diagnosed very early and medication has helped. Yes, I leave notes to myself and write down appointments, but I see people who are much worse than me. They either stumble or can’t speak at all, like one former chief of medicine at a university. It’s sad; he just smiles.”
Dementia is not a normal part of aging, but age is the main risk factor. A 2010 study by the Alzheimer Society of Canada reports that between two per cent and 10 per cent of all cases of dementia start before the age of 65. The rate doubles every five years afterward. Currently, more than 500,000 Canadians, 72 per cent of them women, have been found to have Alzheimer’s or related dementias. That number will more than double in 20 years.
“Dementia is an umbrella term that refers to brain disorders with similar symptoms, such as Lewy body dementia or vascular dementia,” explains Jessica Seidman, counsellor of intake and referrals with the Alzheimer Society of Montreal. “Alzheimer’s is the most common form of dementia, accounting for 64 per cent of cases.”
The 2010 study also indicated a glaring lack of awareness about dementia. People don’t recognize changes in themselves or another that could indicate the illness. They chalk them up to getting older or having a bad day. “If diagnosed early, the person can participate in their future care decisions,” Seidman says.
“And the family has more time to deal with and accept this big adjustment. Unfortunately, most are diagnosed in the moderate to advanced stages when medication is less effective.”
Symptoms can be subtle at first and vary from one person to another. At the first monthly Alzheimer Café, hosted by the Atwater Library in mid-September, Teresa Anuza, co-ordinator of educational services with the Alzheimer Society of Montreal, gave a comprehensive overview of the disease, including 10 warning signs. “Symptoms and severity differ over the early, moderate and advanced stages, and there is an overlap,” she stressed. “And remember: It’s about loss of memory, not a loss of intelligence.”
Like forgetting appointments, names or even common words and substituting them with others. Sentences end up garbled. Tasks like following a recipe or preparing a meal can cause frustration. And because the person may not recognize familiar landmarks, they become lost or disoriented.
Can’t find the car keys? Who doesn’t misplace things now and then? But finding them in the freezer — that’s questionable. And as Anuza stated, it’s often more about the person holding keys in their hand and not knowing their use. She advised to look for mood swings for no apparent reason, like tears switching to anger. Tasks or issues related to numbers, like time and money, become problematic. Another heads-up is someone acting out of character, perhaps becoming confused, suspicious, withdrawn and apathetic.
Berger’s first clue to his illness was memory loss. “I was walking with friends and complained about forgetting recent events,” he says. “Then and there, one of them offered to drive me to see his family doctor.” Difficulty with basic cognitive tests, like drawing a clock and indicating a specific time, led to a referral to Dr. Vasavan Nair, medical chief for the Program for Dementia with Psychiatric Co-Morbidity at the Douglas Mental Health University Institute.
“Mr. Berger is an exceptional guy; he was in such good shape, we could hardly hear his pulse,” says Dr. Nair. He also cites the former English literature professor’s intellectual pursuits. Staying in top form mentally and physically has helped control his symptoms.
“While medication can slow down symptoms, it doesn’t stop the disease, and it doesn’t work for everyone,” Nair explains. “There is no cure, though vaccines are being tested.”
Berger stays optimistic, and he’s relieved that he doesn’t suffer from familial Alzheimer’s: neither of his parents had the disease, which greatly lowers the risk for his two sons.
That’s one concern Norma Gilbert hears often. As co-ordinator of leading practice in health and aging with the CSSS Cavendish, she works with caregivers. She’s often asked by family members if they’re seeing things that aren’t there. What’s normal behaviour and what’s abnormal?
“Family members don’t know if they’re speaking with the person or to the illness,” Gilbert explains. “Many studies show that people with Alzheimer’s can compensate very well. Some even pass cognitive tests and appear more cognitively normal than they really are.
“It’s a sad illness. It’s almost sadder and harder for the family — they have to adapt, not the one with the illness.”
Denial of the disease is common, by the sufferer and the family. It’s a hard disease to face. But acknowledging it, bringing the dirty word out into the open, as Gilbert says, is the start — though it brings sadness, anger and grief over the sufferer and the kind of relationship they see slipping away.
Families often try to cope on their own. But then they seek support, usually two or three years after the diagnosis, when coping skills have deteriorated. “After the 25th time being asked the same question, they can’t take it,” Gilbert says. “They feel guilty about getting angry and frustrated because it’s not the person’s fault. So they come to learn more coping skills.”
One critical piece of advice Gilbert stresses is: Don’t argue. Never, ever. It doesn’t work. And if a behaviour is not causing harm, let it go. Again and again, let it go. Her criteria for when a family should intervene or seek help is always related to safety.
“If you perceive that your loved one may be in mental or physical danger, step in,” she states. “For example, if you drop by and find something burning on the stove, or the person goes out and gets lost. Some families disconnect the stove, so the person microwaves. Or they put locks on the door so the person can’t wander.”
Berger has unabashedly spoken to groups about how he copes with his disease. Living with Alzheimer’s is a fact he says he’s determined to face. He doesn’t have time for the embarrassment or shame many feel.
“It’s not an easy disease,” he states emphatically, adding: “People should never surrender to the stigma.”