Identify dementia early
Red Clarke* was definitely getting forgetful at home – but at age 80, he was still going to work every day. Surely that was proof enough that he was okay, thought his family. “We all knew he was having some trouble,” recalls his daughter Laura. “We just thought, he’s 80, it’s normal.”
It was only when Fred’s wife called his secretary that the severity of the problem hit home. “The woman broke down and cried. He’d been making unprecedented mistakes, and she’d been covering for him for months,” says Laura. “He had to make the decision to retire.” And that’s when the Clarkes first heard the word dementia from their doctor.
Hard to hear
Dementia is a hard word to digest when it’s being applied to you or a loved one, says Jennifer Lingler, a nurse practitioner and pre-doctoral scholar at the University of Pittsburgh Alzheimer’s Disease Research Center. “When people hear dementia, they automatically think of someone who doesn’t recognize their own family members or needs total assistance.” Those are certainly signs of advanced dementia, she says, but there are people with early dementia who are still very capable. “Dementia,” she explains, imply means mental deterioration. It’s a catch-all term for various forms of cognitive decline.”
Today, three years after his retirement, Fred’s dementia is considered severe. It’s been a downward spiral. “But he still knows who his kids and wife are, still does most of his own personal care and still has a sense of humour,” Laura says.
Geriatricians believe that detecting dementia at its earliest stages gives the best prognosis for treatment. However, early signs of dementia can be easily missed or dismissed.
“Probably the biggest misunderstanding about dementia is that most people think it is exclusively a matter of forgetting things,” says Dr. Angeles Garcia, an associate professor of geriatric medicine at Queen’s University in Kingston, Ont. “And because the emphasis is always put on memory loss, people are unaware that some of the odd things they may notice in someone could be signs of early dementia.”
* names have been changed
That was the case with Alice Donaldson*, a mathematics professor. When she started having trouble deciphering numbers, it was obvious to her family there was something wrong. “We thought maybe she’d had a mild stroke or that it had something to do with her multiple sclerosis [diagnosed 10 years earlier],” says her daughter Michelle. “She didn’t have memory problems, and we didn’t realize such a specific problem, isolated to numbers, could be a symptom of dementia.”
Indeed, even as Alice’s condition worsened, she still had little problem with her memory. Instead, she started showing signs of illogical thinking, such as offering her grandson a watch to keep him warm outside or handing her daughter a pen when she asked for a knife.
Not just the symptoms but the patterns
The nature of a person’s symptoms, the order in which they appear and their rate of progression are all valuable clues for health-care professionals in making a diagnosis.
Now, at age 72, Alice has a diagnosis of probable Alzheimer’s disease, and Fred’s dementia is definitely a result of the disease. But while Alzheimer’s is believed to be the cause of roughly 65 per cent of dementia, there are other causes.
“It’s important to have the right diagnosis because the treatment recommendation will vary for different disorders,” Garcia says. For example, patients with neurodegenerative dementias such as Alzheimer’s disease may respond fairly well to medications known as acetylcholinesterase (ACE) inhibitors whereas patients with Parkinson’s-related dementia and fronto-temporal dementias are unlikely to respond to the medication.
A truly effective, long-term treatment for dementia still eludes us, but there are drugs that can slow its pace, especially in the case of Alzheimer’s. Both Alice and Fred were put on ACE inhibitors and had some initial improvement. But these medications, although initially effective in slowing the progression of dementia, only work for a limited time after which the disease resumes its course. If dementia is a storm of the mind, then family caregivers such as the Clarkes and Donaldsons are the vessels that stay afloat on it. If the waves get too high for them to safely navigate, they know they can turn the helm over to professionals but, for now, they respect the scope of the disease and cherish everything that it has spared.
* names have been changed