To many, Alzheimer’s disease is a thief. It is the illness that steals their loved one and replaces them with someone else.
Belleville resident Sue Cooke is all too familiar with Alzheimer’s disease. One of the few words she ever hears her 79-year-old mother speak anymore is “Help.”
Since the diagnoses three years ago, her mother’s condition has declined rapidly.
“Before, you could see she would know who you were at first,” says Cooke.
“When you said ‘I’m so and so,’ you could see it in her eyes – you could see it click in, but that doesn’t happen anymore,” she says.
Alzheimer’s is a disease of the brain and the most common form of dementia.
According to Kristel Nicholas, public education co-ordinator with the local chapter of the Alzheimer Society, there are several different types of dementia. The important thing, she says, is in understanding what dementia is.
“Dementia is someone having trouble with understanding, reasoning, judgment, making decisions and short-term memory. If someone is experiencing those symptoms, those are symptoms of dementia and Alzheimer’s disease is the most common type of dementia,” says Nicholas.
To simplify the relationship between dementia and Alzheimer’s disease, Nicholas uses the analogy of an umbrella.
“Underneath the umbrella, all the little spokes that are coming down, those each represent a different type of dementia. So that’s where the Alzheimer’s disease would be – it would be one of those spokes along with some other common types of dementia, like vascular dementia, Pick’s disease, Lewy body dementia – there’s so many different kinds,” she says.
First identified in 1906, Alzheimer’s disease was discovered by Dr. Alois Alzheimer. It was then he described two distinctive characteristics of the disease - what he described as “plaques” and “tangles.”
“I’m definitely not a neurologist and I don’t pretend to be, but my understanding of it is that it’s the plaques that are attacking the brain cells. They choke them and cause them to shrink and die. And when we lose brain cells, we don’t grow new ones,” explains Nicholas.
“So part of the problem going on in the brain is that the connections are just not getting through. It’s the plaques that are doing the attacking and the damage and then the tangles are what’s left behind,” she says.
As the plaques and tangles develop, the brain shrinks and brain function decreases.
Cooke has witnessed the evidence of these symptoms in her mother. Last year, they had to have her placed in a nursing home.
“She doesn’t know how to eat anymore. They have to help her. They have to remind her what to do. Like, I can tell she’s forgetting how to eat,” says Cooke.
Cooke’s parents have been together for more than 60 years, but now her father lives alone in their marital home.
“It’s hardest on him because they’ve been together so long. And it’s sort of taken his wife away. They are each other’s lives. They always have been,” says Cooke.
“Unless he’s not feeling good, he goes every single day to see her,” she adds.
For many family members, the most upsetting aspect of the disease is the effect it has on the memory of their loved one, particularly the short-term memory.
Nicholas can also explain that in the most simplistic of terms.
“If you can picture knitting a scarf and you’ve got the two needles, and you’re casting on those first few stitches, those represent the person’s earliest memories in life – the very first things that they can remember doing. And throughout your life, you lay down all of these memories, all of these stitches in layers and so as time goes on, you end up with this long gorgeous scarf of all of your memories.
“When someone develops a dementia like Alzheimer’s disease, their knitting stops. No more new stitches are laid down. No more new memories. Instead, what begins to happen for them, is that their scarf starts to unravel from the most recent stitches that were knit, form the most recent memories that were laid down,” says Nicholas.
Determining how far the “scarf” has unravelled is essential to understanding the effect the disease is having.
“However far it’s unravelled, that is now their new reality,” says Nicholas.
“No amount of arguing or reasoning or logic is going to bring them back. We need to jump in there with them and be with them in their reality,” she says.
Sadly, for Cooke’s mother, “reality” does not include her four children.
“Dad - she sometimes knows who he is, sometimes not. She doesn’t always recognize him,” she says, adding, “she knows she likes him, but that’s about it.”
Cooke’s mother is now living somewhere in the distant past – in a time when her father played a key role.
“Sometimes she calls dad ‘Chuck’ – that’s her father,” says Cooke.
According to the Alzheimer Society of Canada, one in 11 Canadians over the age of 65 develops some form of dementia. For Canadians over the age of 85, the occurrence is even higher: one in three.
Age, says Nicholas, is a definite risk factor.
“We know that as people age, their likelihood of developing this disease increases,” she says.
But, she says, “more and more, this disease seems to be affecting younger people.”
Prior to the age of 65, the disease is categorized as early onset Alzheimer’s.
“Just since January, we’ve had probably half a dozen people come to us between the age of 50 and 65,” says Nicholas.
“I have a couple of gentlemen in their 50s,” she says.
Regardless of the individual’s age, understanding their memories, and the emotional connection to them, is the key.
“That will help you as they go backwards in their memories to know what’s going on, and memories and emotions are so closely linked, “ says Nicholas.
“Communicating with words becomes harder and harder for people with any kind of dementia and so if you don’t have your words, it’s the non-verbal behaviour that they rely on - that we rely on them for. So we need to be really good at reading their non-verbal behavior and their cues because eventually they’re not going to be able to tell us with words what the problem is,” says Nicholas.
For Cooke, the word “help” could mean so much. She isn’t really sure what her mother is trying to communicate in that one, simple word and it is getting increasingly difficult to “help” her mother.
“Her health is pretty good, but it’s her mind,” she says. “But as your mind goes, your health goes too,” she says.
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