Evaluation of Alzheimer's treatments should talk to patients: expert

HALIFAX (CP) - The debate over the effectiveness of some Alzheimer's treatments has left out the voices of patients, says an expert in the treatment of the disease.

Dr. Kenneth Rockwood of Dalhousie University in Halifax said Friday that instead of using standardized clinical tests, drugs should be measured against a patient's own goals for improvement. Many experts and policymakers have disagreed on whether a group of drugs called cholinesterase inhibitors are useful enough to justify their costs.

British Columbia is the only province that doesn't pay for the drugs, which include Aricept, Exelon and Reminyl. It costs about $5 a day for a patient to use one of the drugs.

While standardized clinical testing has suggested the drugs can slow the progression of the disease and ease symptoms early on, those benefits are often small and short-lived.

And last summer, a British study concluded the drugs have such little benefit they're not cost-effective.

But Rockwood told a national gerentology conference in Halifax that standard tests typically used to evaluate the effectiveness of the drugs don't show the entire picture.

"The criteria for the adjudication needs to be less arbitrary and more relevant," Rockwood said in an interview.

One of the most widely used tests uses a set of tasks to measure memory, language, attention and other affected cognitive functions. The tasks include asking patients to recall words from a list, or to name objects.

"What standardized testing doesn't tell you is how that translates into everyday lives," said Rockwood.

He said patients, caregivers and doctors should instead come up with a list of goals, such as learning to use a television remote control or playing the piano again.

Doctors could then evaluate treatment by examining if and how well patients meet those goals.

"We don't measure playing the piano again (in standard tests), but it can mean a great deal," said Rockwood.

Rockwood said an upcoming study will show many patients on the drugs saw noticeable improvement on a goals-based scale, though many still performed poorly on standard tests.

"Patients who were on treatment were much more likely to meet all of their goals than patients who were on placebo, and they were much less likely to meet none of their goals," he said.

Rockwood said that even with improved testing, current drug treatments cannot cure the disease, which affects an estimated 280,000 Canadians over age 65.

Nova Scotia uses a system similar to Rockwood's to track the progress of Alzheimer's patients on the province's drug plan, setting targets to measure progress.

"It's a good message because it will help everyone look at the functioning of a person in a broader context," said Valerie White, executive director of the Senior Citizens' Secretariat, a provincial agency responsible for seniors' issues in Nova Scotia.

But Rockwood said Nova Scotia is the exception and other provinces need to change how they look at testing patients.

Alzheimer's is a progressive, degenerative disease that causes memory loss and, in some cases, the inability to perform everyday tasks. There is no known cause or cure.

Stephen Rudin, head of the Alzheimer Society of Canada, said cost, not patient welfare, is behind a reluctance to cover the drugs.

"The economic driver is really the key issue that's precluding the general availability of drugs, and from a public policy perspective, that really is a concern for us," said Rudin, of Toronto.

"You've got people who are living on fixed incomes. If the drugs are not paid for, what they have to do is make a choice on where they are going to choose to spend their money."

Rudin agreed with Rockwood that clinical tests seldom take into account quality of life, even though anecdotal evidence suggests the drugs can help.

"It doesn't really take into account the quality of life that people can enjoy," he said.

Rockwood's study must complete the peer review process before it is published.

The study was funded 80 per cent by Janssen Ortho Inc., the company that makes Reminyl.