The Complexities of Widespread Change to Improve Pain Care in Dementia
One of my most prominent teachers, the late Ronald Melzack, used to advise new researchers to not try to solve a simple problem but to find a difficult one. Melzack believed that the greatest satisfaction for a researcher comes from solving difficult problems. When I started my independent research career, I decided to pursue the problem of pain in people who had severe dementia and were unable to tell us about their pain experience.
I thought that the problem would not be difficult to solve. I used to believe that all I had to do would be to identify nonverbal behaviours that characterize pain in this population and gather them together into an assessment tool. My expectation was that once I validated such a tool, everyone in long-term care would start using it and the problem of pain underdetection and undermanagement in care homes would be solved. I thought that, in some ways, I had failed my teacher because I had chosen a simple problem.
Three decades later, I realized how wrong I was. I had not picked an easy problem. I had picked a very difficult one. Together with highly qualified personnel in my lab and outside collaborators, we developed and evaluated effective ways of assessing pain in dementia. We also developed evidence-based guidelines on better ways of doing these assessments. But people were not using them on a wide scale like I had expected. There are so many challenges to implementation of effective research methods!
The obstacles that we encountered in our journey toward improving pain care ranged from health care facility resource constraints to gaps in point-of-care staff continuing education. I learned that it is very unlikely for any person, who is strictly a researcher, to change people’s lives. It is not enough to discover something but one also has to ensure that the discovery can be implemented to improve clinical care. In other words the discovery has to be feasible in terms of resources and other practical constraints. To be effective, a researcher needs to be able to mobilize knowledge outside of the “ivory tower” that is the research laboratory and place this knowledge straight into the hands of the people who need it. An effective researcher has to be able to influence public policies in order to ensure implementation of the solutions discovered in the lab and should be aware of costs of these solutions and of whether users can afford them.
In the journey toward improving the pain care of people with dementia, I learned to work with point-of-care health professionals, caregiver and patient partners, policy makers, administrators, health economists, digital marketers and even engineers and computer scientists. I had to learn something about each of their areas in order to move closer to the goal of improving pain assessment/management in people with dementia.
Have we accomplished our goal to improve pain care in all long-term care facilities given all of our new interdisciplinary and stakeholder alliances? Not yet. But we are seeing small and encouraging signs of change in more and more facilities and we are better equipped than ever to mobilize change. Please find more information about our work at seepainmoreclearly.org and on my university website https://www2.uregina.ca/hpl
- Thomas Hadjistavropoulos, Ph.D.
How You Can Help?
Would you like to share your thoughts on our See Pain More Clearly campaign and the use of social media to mobilize knowledge about pain in dementia?
We are looking for policymakers, researchers, healthcare workers and family caregivers to participate in a study to evaluate the effectiveness of the #SeePainMoreClearly social media initiative to mobilize knowledge about pain in dementia.
Dr. Hadjistavropoulos is an international leader in the area of pain assessment in dementia and has shown leadership in the promotion of the health sciences at the local, national and international level. He is the Research Chair in Aging and Health, Director of the Centre on Aging and Health and Professor of Psychology at the University of Regina, Saskatchewan, Canada. He served as the 2007 President of the Canadian Psychological Association (CPA).