U of A Faculty of Rehabilitation Medicine researcher launches free online resource to help family members detect pain in adults with dementia
by Laurie Wang
Edmonton, AB - Pain in older adults with dementia such as Alzheimer's is often undetected and undiagnosed. University of Alberta Faculty of Rehabilitation Medicine occupational therapy researcher Cary Brown, PhD, has developed an online workshop and toolkit for caregivers, health-care providers, family members and friends of persons with dementia to help.
"The elderly who suffer from dementia aren't able to say when something hurts or is sore. They may demonstrate their pain through behaviours like rocking or striking out, and we often dismiss these actions for the dementia instead of treating the pain which is usually from a different problem," says Brown, associate professor, Department of Occupational Therapy.
Pain is the most frequently reported symptom of older persons living the community. More than 80 per cent of people living in residential care experience enduring pain. For older persons with dementia, the problem is even greater because they cannot always reliably self-report or ask for medical attention. It takes time to observe and understand that a person with dementia is in pain.
"Sometimes you hear the story about how Mom starts lashing out and fighting when people are helping her get dressed-people think it's the dementia. It turns out that Mom actually has a fractured elbow but nobody knows because she was alone when she fell and hurt herself," Brown says. "Health-care providers have a hard time detecting pain because they are not with the person often enough or long enough to notice changes in behaviour. Frequently family members are the best people to make these types of meaningful observations."
But they need to learn how. With the support of the Alberta Centre on Aging, The Canadian Council on Learning, The Canadian Dementia Knowledge Translation Network and The Alzheimer's Society Alberta and Northwest Territories, Brown was able to create an evidence-based website with: a narrated presentation on pain and dementia; a downloadable resource pack for family members; a downloadable pain log (including the PAINAD assessment tool developed by other researchers in the field); and a facilitator's toolkit with background material, a planning guide, promotional material and supplemental information for organizations who wish to put on a workshop. Agnes Mitchell, Grant MacEwan College School of Nursing, helped put the narrated presentations together. The project took more than a year and a half to get to this stage, undergoing about six months of field testing.
"Arthritis, diabetic neuropathy, fractures, muscular contractures, bruises, abdominal pain and mouth ulcers are among the list of common ailments that go undetected," Brown says. "It is important for those who live or work with persons with dementia to be informed-detecting pain and getting treatment sooner rather than later. Dementia shouldn't mean you have to suffer needlessly in pain."
The online workshop and toolkit are available at: www.painanddementia.ualberta.ca