Living with dementia

An ongoing study seeks ways to improve dementia care in British Columbia

by Valerie Shore

For many baby-boomers, the symptoms are all too familiar—an elderly parent seems increasingly confused and has trouble coping with the most simple daily tasks. A long-term care facility is often the only option. But can this sort of environment give them the quality of life they need and deserve?

It’s a question more and more families are grappling with as Canada’s population ages. It’s also a question being addressed by University of Victoria researcher Dr. Neena Chappell, an international authority on the social, psychological and environmental aspects of health care for seniors.

Working with 26 long-term care facilities in Victoria, the Lower Mainland and the Okanagan, Chappell and colleagues at the University of British Columbia–Okanagan and the Vancouver Island Health Authority are testing a series of new measures they have developed for evaluating the level of care provided to people with dementia.

Dementia is the progressive loss of intellectual functions — memory, language and reasoning—due to a disease process in the brain. As it worsens, it increasingly interferes with the person’s ability to function independently in everyday life. The most common form of dementia is Alzheimer’s disease.

An estimated eight per cent of Canadians aged 65 or older suffer from dementia. As the population ages, the number of dementia cases in Canada is projected to rise to almost 800,000 by 2031.

As a result, long-term care facilities are becoming filled with people with dementia. “In B.C. well over 60 per cent of the residents in our nursing homes have dementia,” says Chappell.

Nursing homes used to provide primarily “custodial care” for residents with dementia. Now, “individualized care” offers an environment tailored to the resident’s unique emotional, social and physical needs.

“Individualized care is touted as the best care we can give a person with dementia,” says Chappell. “But what we haven’t known is how to effectively measure it. If we can’t measure it, how do we know if we’re providing it?”

Working with an expert panel, the study team developed the new measures after observing dementia care in six nursing homes over a three-month period. They’re now being used in a long-term study in the 26 nursing homes to understand what aspects of care are most important for quality of life for people with dementia. “We can’t cure dementia,” says Chappell, “so the outcome measures for people with the disease are their mood, their expressive language skills, their physical functioning.”

Most of the measures are collected from care staff, and focus on such aspects as how well they know each resident, how they communicate with other staff members and with residents, and how well they can assess a resident’s degree of autonomy.

All of the measures are easy-to-use scales, says Chappell. “Administrators can use them to see where their staff need help in training. And families may be interested in using some of them to assess the care in the facility they’ve chosen.”

The measures will soon be published and a validation study is taking place in Hong Kong. Other jurisdictions, including Alberta and the state of Michigan, have shown an interest.
The dementia studies have been funded by the Canadian Institutes for Health Research, the Alzheimer’s Society of Canada, and the Canadian Nurses’ Association.

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