It’s one of the most feared illnesses associated with aging.
Dementia: its potential for diagnosis tends to loom over all of us as we grow older, especially considering the risk doubles about every five years after age 65.
The biggest fear is of dementia erasing our memories, but the condition can involve much more than memory loss.
Such is a point of emphasis for experts in the field, as well as individuals with dementia and their caregivers, during Alzheimer’s Awareness month, which is on right now.
This year’s theme is "I live with dementia," shining a spotlight on the condition’s many misconceptions that can fuel stigma and fear.
"Dementia indeed can be a very scary diagnosis because it threatens your sense of identity," says Dr. David Strang, a geriatrician with the Winnipeg Regional Health Authority’s rehabilitation and geriatrics program, which specializes in caring for individuals with the condition.
Strang and other dementia experts say knowledge can be a powerful ally in grappling with dementia.
1. Memory loss affecting day-to-day functioning, including struggling to remember new information;
2. Trouble doing regular activities such as driving a vehicle, cleaning your home;
3. Difficulties with language, such as forgetting and using words out of context.
4. Disorientation such as getting lost in familiar places;
5. Impaired judgment, including not dressing appropriately to go outdoors on a winter day;
6. Trouble with abstract thinking, which might include struggling with basic math;
7. Putting items in the wrong spot; for example, storing the iron in the freezer;
8. Changes in mood and behaviour — increased depression, anxiety and irritability;
9. Personality changes involving out of character behaviour, including paranoia;
10. Loss of initiative such as a lack on interest in socializing, work or hobbies.
— Alzheimer Society of Canada
It seems many Canadians could beef up their understanding of dementia: A survey by the Alzheimer Society of Canada from two years ago found only five per cent of respondents would seek to know more about the condition if someone close to them was diagnosed.
"It’s definitely important for people to have a better understanding of dementia because it’s just so common," Strang says.
About eight per cent or more of people over age 65 have dementia at any given time, and its incidence increases to one in four individuals by age 80, he says.
"So the chances of us having it, or a person in our family or a friend, are very high."
Strang says understanding dementia — and the symptoms it encompasses — helps caregivers provide better care for their loved ones with the condition. As well, given dementia is often a slow-moving, progressive condition with which individuals typically can live well for many years, a deeper understanding of dementia is even beneficial for those with the illness, offering insight into how their behaviour and thinking may be affected.
Among the important first aspect to understand is that dementia is not just one disease. In fact it is not a disease at all.
"It’s a syndrome," Strang says. "A syndrome is a condition that could be caused by a number of diseases, but there is a collection of symptoms that presents at least in some ways in common."
Most cases of dementia, however, are caused by Alzheimer’s disease. Other causes are cardiovascular (vascular dementia, for example) or Lewy body dementia, related to Parkinson’s disease.
"The one most people are familiar with is Alzheimer’s disease and it does account for about 65 per cent of dementias," says Erin Crawford, program director for the Alzheimer Society of Manitoba.
Each case is as unique the individual who has it.
'It's important not just to be aware of the symptoms people experience, but also that individuals with dementia can still live well' — Erin Crawford, program director for the Alzheimer Society of Manitoba
"Everyone is coming from a very different place having lived their own life and having different physical and emotional histories," she says. "So while there certainly are similarities, it can be very distinct for each person."
Of course, memory impairment is the most common symptom. Even still, the challenge for many is discerning memory challenges related to normal aging and memory loss associated with dementia.
Crawford says most people experience forgetfulness — like temporarily losing our car keys.
Or we might run through all the names of our children before getting to the right one: "But dementia does not just involve forgetting an appointment or someone’s name," Crawford says. The memory loss is often more fundamental, she adds.
So while forgetting we went into the kitchen to make a pot of tea is fairly normal, forgetting how to make a pot of tea, even temporarily, may indicate something is amiss, she says.
Dementia also can encompass other symptoms, including increased depression and anxiety, as well as changes in personality. Strang says these changes are often reflected in how individuals interact with others. Some with the disease become more irritable or agitated; others become more withdrawn. And these symptoms often become more pronounced as cognitive impairment increases.
"As it gets worse, you have less ability to understand what’s happening around you," Strang says, "and that can cause people to act out."
Consider when staff come to wash someone with advanced dementia at a long-term care home.
Put yourself in the position of that patient, he says.
"If you don’t get they’re trying to bathe you, or you don’t even know where you are, all you know then is they are trying to take off your clothes and touch you in a private area," he says.
"That may feel like a sexual assault instead of someone giving you a bath."
Consequently, a patient struggling with caregivers is more understandable in this context.
Strang says these adverse reactions are "responsive behaviours." Understanding how our actions, which we may consider normal, may seem alien to people with dementia can reduce challenging responses.
Often contributing to confusion are three other common problems associated with dementia. One is aphasia, the inability to speak and/or understand language. This may manifest even in the early stages of dementia with individuals struggling to find words in conversation, Strang says.
Another cognitive problem is agnosia, which is the inability to recognize people and objects we used to know well.
"So you might see someone you know, but you lack the ability to recognize that person," he says.
People living with dementia can also experience apraxia — the loss of motor memory. This typically affects everyday functioning: getting dressed, cooking or driving.
As a progressive condition, generally starting with mild symptoms and getting worse over several years, Crawford says anyone worried they’re exhibiting early signs should see their family doctor who can conduct physical and cognitive assessments.
Early diagnosis is helpful, she adds, because it leads to greater awareness and understanding.
"It’s important not just to be aware of the symptoms people experience, but also that individuals with dementia can still live well," she says.
"And they’ll do even better when we understand, support and include them in everyday life."