In his heyday he was a university professor. But now, diagnosed with Alzheimer’s disease, he spends his days wandering around the residence where he lives. His children are heartbroken by what’s become of his life. Yet, the picture may not be as bleak as it seems. Research by geriatrician Dr. Gary Naglie, a senior scientist at Toronto Rehab, shows that people with dementia may be much more satisfied with their quality of life than caregivers think.
Quality of life can be very hard to measure in people with dementia. It’s generally been presumed that those with cognitive impairments cannot rate their own quality of life, which is why assessments are usually based on caregivers’ input. “The problem is that the concept of quality of life is deeply personal and subjective,” says Dr. Naglie.
So, as part of the Canadian Alzheimer’s Disease Quality of Life Study, Dr. Naglie and colleagues set out to explore whether people with Alzheimer’s can rate their quality of life. The researchers collected data on patients and caregivers from Vancouver to Halifax, using a variety of different assessment tools. Results were both surprising and encouraging. “We found that people with mild-to-moderate dementia can provide meaningful information about their quality of life―and they tend to rate it significantly higher than their caregivers do,” says Dr. Naglie, who is principal investigator on the study.
He says these findings are consistent with some studies of other chronic conditions. “People with other long-term disorders such as heart failure or diabetes often rate their quality of life much better than do caregivers, probably because they adapt to their disease over time.”
With dementia, another factor may also be at play. “Loss of insight may contribute to patients’ positive perceptions. They may be less aware of their deficits than others are,” explains Dr. Naglie.
These findings have important implications. To test new therapies for dementia, researchers must evaluate their effects on quality of life. Whenever possible, studies should now include patient self-ratings, as well as caregiver proxy-ratings, says Dr. Naglie.
Holder of the Mary Trimmer Chair in Geriatric Medicine Research at the University of Toronto, Dr. Naglie has published his findings and made presentations to lay people, caregivers and healthcare professionals. “It’s important to get the word out,” he says. “Quality of life is a key factor in long-term illness. We must respect what patients with mild-to-moderate dementia tell us about how they experience life.”
Originally written for Toronto Rehab's Plus 7 research report.View on-line publication
How to talk to a family member with dementia
Many older people with mild dementia live at home and communicating with them can be difficult and frustrating – yet it’s vital to keep trying. “Building a relationship with someone who has dementia requires ongoing work and patience,” says Dr. Kathy McGilton, Research Scientist at Toronto Rehab, Canada’s largest provider of adult rehabilitation services. The first step is to assess how much someone with dementia understands, says Dr. McGilton, who has done extensive research into how health care providers relate to people with dementia. “You need to tailor communication strategies to people’s abilities – not their disabilities. You don’t want to oversimplify and talk down to the person, but you want to be understood as well.”
Here are some dos and don’ts for communicating with people with dementia:
- Manage the environment. A noisy dishwasher or a ringing phone may short-circuit communications.
- Use short, simple instructions. Put on your shirt and socks, brush your teeth and come downstairs, may be too complicated for some.
- If someone has word retrieval problems, encourage her to describe the word or “talk around” it.
- Ask questions that can be answered yes or no.
- Don’t neglect non-verbal communications. Speak in a friendly voice, look at the person, and use appropriate body language. If he seems stressed, pause.
- Choose happy topics.
- If the person becomes agitated, try a different approach. Don’t rush or interrupt her – allow plenty of time to respond.
- Stay calm. If you get frustrated, take a break. Your family member will sense your anger and react.
“Given time, families often come up with workable strategies on their own,” says Dr. McGilton. “But it’s easier to learn how to relate to a family member with dementia by reading up and adopting some simple strategies than by painful trial and error.” For more information, visit www.torontorehab.com
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