Living with Alzheimer’s

A few years ago, Evelyn Taylor began to forget the names of people she’d known for a long time. She started to confuse simple words. She wasn’t even sure whether to answer the door or the telephone when she heard the latter ring.

“The final straw,” says the 58-year-old homemaker from Winnipeg, “was when I tried to memorize a six-line limerick out of Reader’s Digest that should have taken five minutes.”

Instead, Taylor spent half an hour working on the poem, but without success. She tried again the next day, but again met with failure. “I realized there was something seriously wrong,” she says.

A visit to her doctor revealed her worst fears. The diagnosis: probable Alzheimer’s Disease (AD). Few words can evoke such fear and hopelessness in the hearts of patients and their caregivers.

Canadian cases
Alzheimer’s is a progressive, degenerative disease that destroys brain cells. It’s estimated to affect close to 240,000 Canadians. As the population ages, these numbers are likely to grow. In fact, the Alzheimer Society predicts that by 2031, more than 750,000 Canadians could have the disease.

In the majority of cases, AD is uslly only diagnosed after an autopsy, where a study of the brain reveals stringy tangles in the neurons and amyloid plaques that have built up around the neurons over time. But doctors still don’t know if this insidious growth is the cause or result of the disease.

The symptoms of AD aren’t difficult to spot. As the disease progresses, the patient loses cognitive and reasoning skills, and eventually loses control over physical functions as well.

The most obvious sign of Alzheimer’s is dementia, a set of symptoms that include the loss of cognitive skills, memory loss and changes in mood and behaviour. Not to be confused with the normal forgetfulness that often comes with aging, patients with dementia will have trouble reasoning and performing simple tasks such as counting the change in their pockets or recalling the day or month.

Risk factors
While scientists still don’t know what causes Alzheimer’s (the most common form of dementia), they have been able to identify certain risk factors, including genetics.

Age, it seems, is the main culprit.

  • An estimated three per cent of people aged 65 and 74 have Alzheimer’s
  • The figure jumps to about 15 per cent from ages 74 to 85.
  • As many as 30 to 40 per cent of those aged 85 and above show signs of Alzheimer’s.

If you’re a woman, the odds are stacked even higher.

  • Research shows that women make up two thirds of all AD patients.

Other studies show that suffering a major head injury at some point in life increases the risk of developing Alzheimer’s. Also, elevated blood pressure levels and higher than normal cholesterol may also play a role.

Not surprisingly, doctors suggest regular exercise and healthy eating are important preventative measures.

Early stage treatment
There’s some good news for those who may be predisposed to AD. Doctors at the Jewish General Hospital in Montreal are currently working on a blood test that could tell people whether they’re developing the disease long before they exhibit any symptoms.

But can an earlier diagnosis really help when there’s no cure? Doctors say for people in the early stages of AD, like Evelyn Taylor, something can be done. Taylor takes a medication that controls her symptoms — donepezil (Aricept).

One of the very few drugs available to slow the progress of the disease, Aricept and drugs like it can’t stop the disease, or repair damage that’s already been done. What’s more, they don’t work for everyone.

Dr. Robert van Reekum of Toronto’s Baycrest Centre for Geriatric Care says researchers still don’t know why these drugs will help some people dramatically and others not at all. But, he says, the drug appears to have an effect not only on a patient’s cognitive skills, but also on their behaviour and motivation.

“Many AD patients lose their initiative, their get up and go,” says van Reekum. “There is some evidence that Aricept may help restore that.”

Ibuprofen and HRT
One type of readily available medication that may help is non-steroidal anti-inflammatories (NSAIDs) such as Ibuprofen. Studies have shown that people with chronic arthritis who take NSAIDs are at lower risk for developing Alzheimer’s. Right now, doctors don’t usually prescribe NSAIDs for the disease, but researchers are trying to determine if they could help once diagnosis has been made.

Recent research suggests that women who take postmenopausal hormone replacement therapy may be at lower risk, but not enough work has been done for doctors to suggest this as a preventative measure.

And there are other drugs on the horizon. One of the most exciting pieces of news for AD patients came last summer when it was announced a vaccine was being tested to remove amyloid plaques that build up in the brain of those affected.

Researchers working for Elan Pharmaceuticals in the U.S. found that removing these plaques improved neurological function in mice, a finding confirmed by an independent team of researchers in Toronto. The vaccine is currently in the early stages of testing on humans.

Unanswered questions
But Dr. Kenneth Rockwood, a professor of medicine at Dalhousie University in Halifax, says families should not be overly optimistic about this potential breakthrough.

“There are a great many unanswered questions,” he says. “We need to view with a certain skepticism any such pre-clinical announcement.”

The vaccine has not as yet undergone enough testing to determine if it will work on humans, or even if humans can tolerate it. And while Rockwood does say using a vaccine to induce the immune system to fight Alzheimer’s is a new way to think about the problem, he stresses that Alzheimer’s is still incurable, and the progress of the disease inevitable.

Yet, because of the potential number of patients, pharmaceutical companies are working at breakneck speed to develop treatments. While most will not be cures or preventions, Rockwood says the progress is heartening.

“I’ve gotten a bit more optimistic in recent years,” he says. “Five years ago, I made it a rule never to talk about Alzheimer’s Disease and hope in the same sentence, but I do now.”

Demanding disease
Aside from medication, patients and caregivers need to consider the long-term implications of the disease — especially as Alzheimer’s has such a dramatic impact not only on the patient, but also upon those close to them. The disease, to say the very least, is demanding.

“This is a disease that opens up a Pandora’s Box of family feelings,” says Sue Hart, author of numerous booklets on caring for Alzheimer’s patients. Those with dementia, says Hart, may not be themselves in many ways.

At the Alzheimer’s Day Centre in Toronto where she works, many families are faced with loved ones who become aggressive or sexually insatiable. Although a minority of people show these types of symptoms, it can be enormously disruptive for families who don’t know how to cope with it.

Many patients also wander around their homes endlessly, or get up in the middle of the night and get dressed to go out. Without locks on doors, or ways of diverting them, patients can leave the house and get lost or injured.

Long term care
Hart says this need for 24-hour attention, combined with loss of control over bodily functions, are signals the family should consider long term care. Unfortunately, however, by the time caregivers reach this decision, it’s often difficult finding suitable facilities as waiting lists for provincially-funded homes can be as long as two years.

Fortunately, as demand increases, more beds are becoming available, with some facilities now being specifically designed for Alzheimer’s patients. 

Moyra Jones, a consultant for long-term care facilities and the designer of a system she calls “GentleCare”, says it’s important to create a living space similar to that patients already know.

“If a dining room looks like a dining room and operates like a dining room, they’re more likely to be able to feed themselves properly,” she says.

Many facilities have already implemented her ideas, with varying levels of success. Others are even considering her concepts at the architectural stage. Jones argues that the more common ‘hotel style’ of construction found in the majority of facilities is foreign to most patients.

Home-like design
Instead, she recommends smaller, residential-style facilities, such as the Rocmaura Nursing Home in Saint John, N.B. Rocmaura’s 24-bed Alzheimer’s unit was built specifically for dementia patients who tend to wander, be aggressive, or get agitated.

Every room is private, and Executive Director Sister Anita Holmes says the decor is “as home-like as possible.” The result: calmer residents, who are better able to assist in their own care.

Finding the right facility is another task that usually falls on the caregiver. The key is establishing what the person with Alzheimer’s wants – and needs — early on, before they become unable to communicate their wishes.

Substitute decision maker
In fact, author Susan Hart says one of the first things she tells people who call her is to set up powers of attorney, and substitute decision-making arrangements. She says things are too complicated in the later stages for patients and caregivers to be able to make clear-headed decisions.

For Evelyn Taylor, the important thing was to make caregiving and decision making as easy as possible for her husband and children. Consequently, she openly discusses with her family the hardest decisions they’ll have to face by being clear about her choices: when to stop medication, and when to ask for a “do not resuscitate” order.
In British Columbia, where Taylor resides, the government has passed legislation legalizing “enhanced representation agreements”. Going somewhat beyond a standard financial power of attorney, these agreements allow a person to appoint a representative to carry out their wishes in other aspects of life, particularly medical decision-making.

But not all provinces have such agreements. Although most allow for someone to make decisions when an individual isn’t able to, not all of them require the representative to follow previously stated intentions.

A patient should therefore be sure to choose someone who knows their exact wishes-and is willing to carry them out.