Pain Matters Guide

Pain is the body’s warning sign that something is wrong. Many chronic illnesses and painful conditions cause pain—such as diabetes, arthritis and toothaches. But because people living with dementia struggle to express pain in typical ways, they often have untreated pain. This is especially an issue for people in the later stages of dementia who may struggle to communicate. 

Pain Matters was created to help family members, friends and caregivers of people with dementia recognize the relationship between responsive behaviour and pain. Behaviour has meaning and it may be an expression of pain. 

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Understanding Pain & Dementia: An Online Workshop and Toolkit

Undiagnosed and under-treated pain in the elderly is such a significant problem that the International Society for the Study of Pain declared 2006 the International Year of Pain in Older Persons.

We know that pain is one of the most frequent reasons older persons living in the community talk to a healthcare provider. We also know that over 80% of people living in residential care experience enduring pain .  For older persons with Alzheimer’s disease and other dementias, the problem is even greater because they cannot self-report or reliably ask for medical attention.  Untreated pain causes serious problems for people with dementia. They cannot take care of themselves as well, they are more likely to fall, they have poorer quality of life and they may have increased inappropriate and aggressive behaviors- all because of undetected and untreated pain. It takes a longer period of time to notice changes in behavior and understand that a person with dementia is in pain. Because of this healthcare providers often do not detect the pain.  Family members are often the best people to make meaningful observations about pain.  However, they need to learn how to do this. The online Understanding Pain & Dementia Workshop,  can help families learn about pain in someone with dementia.

The Understanding Pain & Dementia website for family members was developed by researchers in the Department of Occupational Therapy, University of Alberta with support from the Canadian Council on Learning/ Adult Learning Knowledge Centre, the Alberta Centre on Aging, the Canadian Dementia Knowledge Translation Network and the Alzheimer Society Alberta and Northwest Territories .  The website has had over 2,000 visitors and received the Canadian Pain Society Pain Awareness Award 2010.

This educational website contains:

  • A narrated presentation about pain and dementia
  • A downloadable resource pack for family members
  • A downloadable pain-log and the PAINAD assessment tool (Warden, Hurley, Volicer 2003)
  • A facilitator’s toolkit of background material, a planning guide, promotional material, and supplemental information for organizations who wish to put on a workshop using the materials.

We are currently in the process of analyzing website visitors registration data to determine which strategies were most successful over all and if certain strategies are more suited to target knowledge translation activities to one audience than another.

For more information contact Cary Brown, PhD  Department of Occupational Therapy, Faculty of Medical Rehabilitation, University of Alberta.