2019 Global Year: Interview with the Co-Chair

Preparing for More Pain Patients with Dementia: A Conversation with Dr. Miriam Kunz

Twenty years ago, Miriam Kunz, PhD, MPsych, was one of the few researchers studying the role of nonverbal communications in assessment and treatment of pain in individuals with dementia. Now a professor at University of Groningen (Germany) and co-chair of the 2019 IASP Global Year Against Pain in the Most Vulnerable, Kunz is using her advanced understanding of patients’ facial expressions and other nonverbal cues of pain to draw worldwide attention to inadequate pain treatment of vulnerable patients.

You can learn more during her presentation, “Novel Training to Improve Pain Detection in Dementia,” which is part of a free IASP Global Year webinar, “Pain in Dementia,” 24 September at 11 a.m. EDT.

Here, Kunz discusses the evolution she has seen in her field and how pain professionals can better prepare to assess and treat the pain of a growing number of people with dementia.  

IASP: How have you seen clinical understanding of the role of body language and nonverbal communications evolve, and are pain students are receiving more training in this assessment area?

Kunz: Twenty years ago, nearly no one was looking at nonverbal indicators when assessing pain in individuals with cognitive impairments. Now their importance is widely accepted, and everybody knows these are quite essential to assessing pain in nonverbal individuals.

However, we’re lagging behind in training. It took a while to understand the need to look at these pain indicators, but nowadays there are several observational pain scales available to assess pain in a structured way. I think the too-optimistic misconception was that developing observational pain scales and telling nurses what they should be looking for would be sufficient to improve pain assessment in nonverbal patients, but this has shown not to be the case. Nurses are often quite insecure about what these items mean, when to observe the patient, how to score the items, or how to interpret the results. They need special training to tell them how the item “groaning,” for instance, is defined--what it is and what patient sounds or noises would be considered groaning.

This improved training was not really done in earlier years, but now people are understanding that nurses need that kind of training, and I hope that in the next five years, this kind of training will be developed.

Regarding the use of facial expressions, it’s often difficult in everyday care for nurses to look at the face of the patient. Nurses should always look up while getting the patient out of bed, for instance. Because that’s challenging, maybe having another nurse in the room would help to observe the facial expressions. That’s often missed, and these practical problems have not really been solved.

As the global population ages, pain in patients with dementia—another of your specialties—will be a growing problem. How might clinical and research communities related to pain better prepare for the influx of such vulnerable patients?

There needs to be shifts with regards to pain. What is pain? If you look at IASP’s definition of pain, it’s a subjective experience, and the global standard to assess it is the self-report. But there needs to be a shift for clinicians who work with nonverbal people to know they always need to include observational scales since self-reporting may not always be possible. 

Another thing is the type of pain scale. Often, the visual analog scale is used, but this scale is too complicated for patients with cognitive impairment such as those with dementia. A verbal rating scale—slightly painful, moderately painful, very strongly painful—is better for some vulnerable populations, so clinicians need to adjust the type of scale they’re using.

The last suggestion is regarding research. So far all clinical trials on analgesic treatments have excluded patients with dementia because of the lack of informed consent and the lack of pain report, but we also need trials to see how these pain drugs work in patients with dementia—and that research should be done in the next year.

I’m a psychologist, but I find that when I talk to medical colleagues, as well as nurses, they have stressed that they need advice about how to treat patients with dementia pharmacologically. It seems this should also interest pharmaceutical companies whose medications are used to treat patients with dementia. With the increasing number of aging patients, it could be of financial interest to them as well, so I hope that these analgesic trials in dementia will be done in the future. 

What do you think is the most important thing for clinicians to understand or remember when assessing and treating a patient with dementia?

To think about using easy scales like verbal rating scales. If the patient doesn’t answer the question, do you have pain? Know that no answer doesn’t mean the patient isn’t experiencing pain, so always include an observational pain scale. When you see the patient might be  impaired be in pain, also think of nonpharmaceutical treatment options--maybe a change of bedding or sitting situation like changing the sofa for something more comfortable. Think about these easy solutions that could be the cause of pain before you move on with pharmaceutical treatment. 

You are a professor in medical psychology and sociology. How do you see these fields changing the treatment of pain in general and in vulnerable populations specifically?

It's a slow change. It took us several years to understand or accept that patients with dementia are not insensitive to pain and are still experiencing pain. That was a misconception 20-30 years ago. For the treatment of it, for the field to be changing and including psychological aspects--this has not really been done yet.

In The Netherlands, which is far ahead of many other countries in elderly care, they try to make their nursing homes more like living room situations. Soundscape plays a role because loud noises like people talking and running around can be stressful or confusing. If it’s more like a living-at-home situation, where you can be quiet and listen to soft music, it contributes to better health. We can transfer this thinking to our treatment of patients with dementia, trying to increase the emotional well-being of the patient in ways that could lead to a reduction in pain.

The global burden of pain has been receiving greater recognition from international health institutions such as the World Health Organization. What should pain professionals be doing to accelerate wide-scale adoption of actions that will help relieve pain in vulnerable populations in particular?

The key point is getting families involved, because they know the patient best, and the trend is that these patients won’t be living in nursing homes anyway--they’ll be living at home--so we have to educate families about signs of dementia and pain, and why it’s difficult to detect pain. We need to get them on board and show them which signs they should look for, so that if they see changes in behavior, for instance, that might mean pain is involved. Another of the most important things pain professionals can be doing, of course, is raising awareness for this in a political way--giving presentations, for instance. But the key point is getting families involved.


To learn more, register for the free IASP webinar, “Pain in Dementia,” 24 September at 11 a.m. EDT and get engaged in the IASP Global Year Against Pain in the Most Vulnerable.