Under-assessment and under-management of pain in people with dementia
Pain is very common among people with dementias such as Alzheimer's disease. According to some estimates, as many as 90% of older adults who live in long-term care facilities (nursing homes) suffer from pain. Pain in dementia can sometimes cause challenging behaviours. Healthcare staff may misattribute these behaviours to psychiatric problems and treat them with psychiatric rather than pain medications. Psychiatric medications may sometimes increase the risk of earlier death among these patients.
Despite the gravity of the problem, pain is under-treated and under-assessed in this population. Pain problems that are missed may result in unnecessary suffering and delayed diagnosis. Because pain is a complex and subjective experience, health professionals rely on their patients to tell them about their pain. In severe dementia, people's ability to communicate is compromised and many are unable to report pain. In most such cases, pain can be assessed through systematic observations of specific pain behaviours (e.g., grimaces and other facial reactions), but health professional and caregiver continuing education is often needed to optimize the quality and frequency of such assessments.
Our team is internationally renowned for developing and validating innovative approaches to the pain assessment of older persons who present with dementias and serious limitations in ability to communicate. As an example, the Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC and PACSLAC-II), developed by our team, has been translated in several languages and has been used around the world. Qualified health professionals interested in reproducing the PACSLAC-II for research or clinical practice, may request permission by contacting us. Permissions are granted free of charge for non-profit uses.
Furthermore, knowledge translation work has involved the development of a pain self-management program for seniors, which has been made available through the International Association for the Study of Pain (IASP). We are also working with the AGE-WELL Network of Centres of Excellence toward the development of advanced technologies designed to automatically detect and monitor pain behaviours.
In partnership with national and provincial organisations (e.g., AGE-WELL Network of Centres of Excellence, Canadian Association of Gerontology, Alzheimer Society of Saskatchewan), older adults, caregivers, and health professionals, we launched a social media campaign #SeePainMoreClearly to increase awareness of the underassessment of pain in dementia and disseminate evidence-based practices. In addition, we prepared a short informational video that addresses this critical issue. The success and impact of our effort will be tracked systematically through questionnaires and other indicators such as YouTube views, hashtag mentions, media stories, Twitter impressions, and other related information.