People with Dementia Are Often Undertreated for Pain

Caregiver, patient expert
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When people lose their ability to articulate what is causing them pain, this pain is often overlooked by doctors.

A recent Slovenian study presented at the Congress of the European Academy of Neurology (EAN) in Copenhagen and conducted by Dr. Martin Rakusa investigated this problem. It involved 452 patients with an average age of 65 who had been treated for diabetes over a period of many years.

Some 44 percent (199 individuals) were considered cognitively impaired. Using careful examination to compare pain levels of those who could communicate with those who could not, it became obvious to the team that those who could not communicate their pain still experienced as much pain as those who could.

Dr. Rakusa explains: "Cognitively impaired individuals or individuals with dementia evidently articulate their complaints less frequently. We therefore have to do more than just ask them about possible pain; we have to actively examine them to determine whether they are experiencing pain."

Because of the lack of clarity over the years about whether or not people with dementia felt as much pain as those who did not have a cognitive disorder, other researchers have been looking at the concept. Ruth Defrin, PhD, of University of Tel Aviv calls learning about the pain levels of those who cannot speak for themselves “an imperative ethical goal.”

Dr. Defrin and her colleagues concluded from their own research, published last year, "It appears that those with widespread brain atrophy or neural degeneration...all show increased pain responses and/or greater pain sensitivity [than those without cognitive impairment].” Dr. Defrin’s research paper was reviewed in PAIN®, the official publication of the International Association for the Study of Pain.

My father had dementia brought on by failed brain surgery. There were many times during the ten years that Dad lived with his dementia where the nursing home staff and I were left to interpret his body language in order to find solutions for what was bothering him. The most vivid memory, however, came during his last months. Before hospice took over his care, he’d lift himself up on one elbow and repeatedly slam his fist into the palm of his opposing hand, grimacing in obvious agony.

The doctor was puzzled but I remained steadfast. I knew that Dad was in significant pain and that his pain was not being addressed. Since Dad was showing end-of-life symptoms, the nurses and I were able to convince the doctor to allow Dad hospice care. Just a few hours after hospice took over his care Dad was peacefully lying in bed, able to smile and respond. His pain had been addressed.

When people can’t communicate their pain verbally, they will generally do so by acting out in some manner, unless of course they’re unable to do even that. Caregivers for people who cannot communicate their pain know that watching body language is vital to providing adequate care.

It’s unconscionable that people with cognitive illnesses can often be left to suffer from the chronic pain of arthritis, or pain from any other issue -- even a drug side effect such as my father once suffered.

If more research is needed, let’s do it. However, there’s already plenty of evidence that we must train both professional and family caregivers to monitor body language. If a patient acts out, family or staff should ask a doctor to provide a close examination to look for possible uncontrolled pain.

Pain control is the least we can do for our loved ones who are living their last years, months or weeks unable to communicate their needs. We’d certainly want that for ourselves.

See More Helpful Articles:

Chronic Pain Management in People With Dementia Complicated

How a Family Mediator Can Restore Family Peace

Managing Diabetes Reduces Cognitive Decline According To Study


Carol Bradley Bursack is a veteran family caregiver having spent over two decades caring for a total of seven elders. She is a longtime newspaper columnist and the author of “Minding Our Elders: Caregivers Share Their Personal Stories,” as well as a contributor to several additional books on caregiving and dementia. Her websites can be accessed at www.mindingourelders.com. Follow Carol on Twitter @mindingourelder_ and on Facebook _Minding Our Elders.