Editor’s Note: Dementia is a neurodegenerative disorder that affects memory, executive function, and the ability to perform activities of daily living. It also can affect language and speech abilities, which leaves patients with limited ability to communicate their feelings or experiences, including when they might be experiencing pain.
Thomas Hadjistavropoulos, PhD, a professor and psychologist at the University of Regina in Regina, Canada, has worked to create a standardized approach to evaluate, assess, and treat pain in senior citizens living with dementia. In partnership with national and provincial organizations in Canada such as AGE-WELL Network of Centres of Excellence, the Canadian Association of Gerontology, and the Alzheimer Society of Saskatchewan, he recently launched a social media campaign and educational initiative, #SeePainMoreClearly, to facilitate partnerships to improve pain assessment and management in this group.
Hadjistavropoulos recently spoke with RELIEF freelance writer Kayt Sukel to discuss pain assessment and management in people with dementia, what he hopes to accomplish with #SeePainMoreClearly, and more. Below is an edited transcript of the conversation.
How did you first become interested in the issue of pain in dementia?
I’m often asked that question. People expect to hear that I had a family member who had pain and dementia. But that wasn’t the reason. What happened is that I was doing research on the early detection of Alzheimer’s disease. My first appointment was at the University of British Columbia in Vancouver. One of my colleagues there, who is also now a friend, Ken Craig, was doing research on infants, who are another population with limited ability to communicate verbally.
He came to my office one day and said that we were each working in areas facing the same issue. He was studying pain in patients who couldn’t speak, and he bet that pain was also an issue in the late stages of Alzheimer’s disease, where patients have difficulty expressing themselves verbally. He thought we could collaborate and that I could apply some of the things he learned from his work in infants. So, the first couple of studies I did were in collaboration with Ken. But the more work I did, the more I realized that there was a huge need in this population. There were enormous gaps in our understanding of pain and how to assess and manage it in older people with dementia. Today, we know a lot more. But thirty years ago, we really knew very little.
Why are people with dementia such a vulnerable population when it comes to pain?
Estimates for pain in dementia are quite high—some are as high as 80% in patients who live in long-term care facilities. In Canada, many of the people who reside in such facilities have dementia. If you look at the more moderate to severe stages of dementia, language abilities deteriorate. That means a person’s ability to effectively communicate his or her subjective state of pain is compromised. And what we see in those circumstances, when pain needs are unmet, is that patients tend to become quite agitated. The staff in the long-term care facility often do not know what’s wrong and what is causing that agitation. So, the patient may end up receiving psychotropic medication when the source of the problem is, in fact, undermanaged pain. Over time, psychotropic medications in older persons who are frail can hasten death.
It’s quite a large problem. Staffers and even clinicians may not understand that pain is causing the issue with the patient. Many are unfamiliar with standardized methods of observational pain assessment and so those patients may continue to suffer in silence. And while some patients in long-term care are lucky enough to have family who see them daily and can advocate for them, many don’t.
How can doctors and other healthcare providers recognize pain in these individuals who can’t communicate it?
There’s quite a bit of research now about how to effectively assess and monitor pain in this population. Most of the methods involve the observation of pain behaviors. Patients may have changes in their facial expression, like grimacing, which are usually the most telling. They may be restless or agitated. They may make certain sounds or vocalizations or guard the affected area.
But even though we have all this research, standardized pain assessment methods are not used very widely in this population. There are a variety of obstacles to their use, including continuing education gaps and a lack of resources to do effective pain assessments. But, that said, our studies show that pain assessments can be managed and done on a regular basis when that education is there and when there is the right organizational structure and support.
But, frankly, there have been studies looking at the knowledge of frontline long-term care staff and there are a lot of gaps. Staff may not always understand, for example, the importance of stress and psychological factors to pain. They may not necessarily know how to effectively assess pain through behavioral observation even though the information is out there.
But even if they did have it, to successfully do the assessments requires systemic change across these facilities. No one person who works in a long-term care facility can solve the problem on his or her own. There needs to be a systemic solution and systemic support to get these assessments done regularly. Policy changes are also needed. Here in Canada, it is mandated in most provinces that these pain assessments are done once every three months. But that really isn’t sufficient. We believe that, to make a real difference, pain should be assessed, at a minimum, once a week and even more often when pain is suspected.
What causes pain in people with dementia? Many individuals with dementia have co-occurring medical conditions. Is that the problem?
In dementia, most people have the same types of pain problems. Many of these problems are musculoskeletal in nature, usually back pain or something like that. There are also fractures and other problems from falls. Neuropathic pain also occurs frequently, which is caused by damage to the nervous system. But other medical conditions do contribute. Stroke, cancer, arthritis, diabetes – these all can cause pain. But, in most cases, we are dealing with musculoskeletal pain.
Just because a person has dementia doesn’t spare them from feeling pain. And, unfortunately, they aren’t always getting treatment for it. Studies have now shown that a patient is much less likely to receive analgesic treatment for pain when he or she has dementia versus when that patient does not have dementia.
What inspired you to start the #SeePainMoreClearly initiative?
I’ve been frustrated for many years that, while there are many solutions available to help these patients, they just aren’t being implemented the way they should be. As I’ve mentioned, there’s now a lot of research on this subject but we aren’t seeing it being used much. Frankly, the traditional methods of knowledge translation just haven’t been that effective. Workshops, conferences, brochures and other things just haven’t worked that well. Take workshops, for example. Our research shows that workshops do increase knowledge and the people who attend them say they are satisfied but, despite this, we don’t see any changes in patient outcomes or any widespread impact on clinical practice. So we needed to try something different. That’s really the motivation behind this.
Then I looked to my colleague, Christine Chambers, who has mobilized social media to help address issues like children’s vaccination pain, and then, later, children’s pain in general [see RELIEF related coverage of Chambers’ work here and here]. She was frustrated that so many research findings never find their way into practice. The ones that do take on average 17 years to get there. She created this amazing social media content to help get that knowledge out into the world. As far as I’m concerned, she is a pioneer and created this model for using social media on a large scale to get quite a bit of attention. And it’s had significant impact. I saw what she was doing and wanted to do a similar program to get the word out about pain in dementia.
We only just launched. But in the first six days, we had more than one-million impressions on Twitter, representing more than 500,000 individuals. Our hashtag, #SeePainMoreClearly, has been used in eight different countries already. People are watching our video and we’ve generated media interest. We have started a conversation.
What do you hope to accomplish with the initiative?
First and foremost, we want to increase awareness of the problem. Most people aren’t even aware that there is a problem. So we are reaching out to family members, caregivers, people who may have dementia, policy makers, and professionals who work with people with dementia, so they can at least know that there is a problem. We’ve made it a very broad campaign because everyone gets old, and, chances are, you know someone in your close circle who has been or will be affected by dementia.
We have a survey on the website that people who watch our campaign launch video can fill out, so they can start talking to healthcare professionals about pain assessment for their loved ones. And that speaks to our second goal of spreading knowledge about what solutions are available to assess and treat pain. We want to encourage health professionals to seek out these solutions, of course, but we also hope to influence policy to encourage more frequent pain assessments. Frankly, as I said, once every few months is just not anywhere near where we need to be.
Dr. Chambers has provided a framework for the dissemination of information and I’ve learned a lot from what she’s done. And we hope to have as far-reaching of an impact as she’s had. So, I will consider #SeePainMoreClearly a success when we see our information shared across the globe, get information back from stakeholders on what they need, and see policy changes regarding pain assessment that are linked to the campaign. I think the latter, really, would be the ultimate sign of success.
To learn more about #SeePainMoreClearly, visit the website at https://www.seepainmoreclearly.org/. There, you can share your own story, watch the video about pain in dementia, and respond to the survey.
2019 is also the International Association for the Study of Pain (IASP) Global Year Against Pain in the Most Vulnerable, including pain in those with dementia. See here for more information, including a recent webinar on pain in dementia.
Kayt Sukel is a freelance writer based outside Houston, Texas.