Pain: How Is It Perceived by People with Dementia?

Caregiver, patient expert

It’s far too easy for onlookers to view someone with dementia as unable to feel pain. Since the disease eventually renders most people helpless and cognitively inexpressive, they can't articulate what hurts or why they are upset. Caring researchers have now brought new insight to this issue.

In an article on altered pain processing in patients with cognitive impairment, Medical News Today states that new research shows how wrong previous ideas about what people with cognitive disorders could feel have been.

Ruth Defrin, PhD, of University of Tel Aviv, Israel, and colleagues concluded from their research that, "It appears that those with widespread brain atrophy or neural degeneration...all show increased pain responses and/or greater pain sensitivity.” Their research paper was reviewed in PAIN®, the official publication of the International Association for the Study of Pain. The journal is published by Wolters Kluwer.

The lack of the ability to articulate pain has been the reason that false conclusions have been drawn through the years. My own experience with people who have had cognitive impairment has shown me that caregivers and medical provides need to pay attention to the body language of the person who cannot otherwise express their pain. Body language can often provide important clues as to what is wrong.

According to the University of Tel Aviv study, people with different types of cognitive impairment can experience varying changes in their ability to perceive pain. The study suggests that people with mild to moderate Alzheimer’s disease may experience elevated responses to pain, while sensitivity to pain in late Alzheimer's disease is unclear.

It’s felt that pain responses may be decreased in patients with frontotemporal dementia (Pick's disease) and Huntington’s disease, yet pain responses may be increased in those with Parkinson’s disease. The study suggests that effects on pain sensitivity may vary even for diseases affecting similar areas of the brain.

The Medical News Today article states, “Dr. Defrin and coauthors believe that understanding the experience and responses to pain in people with CI [cognitive impairment] is ‘an imperative ethical goal.’”

Also important is the finding that the aging body itself may experience pain more acutely than the younger body. Since normal aging is often associated with slightly reduced cognitive performance, the authors of the study suggest that these changes may set up a vicious circle, with pain leading to a decline in cognitive function and vice versa.

After reading about this study, my opinion that it’s better to error on providing more pain control rather than assuming the person is acting out because of some other issue has only solidified. Pain control is complicated when it comes to treating those with dementia and other cognitive diseases or injuries. Doctors and caregivers must put themselves in the place of the person who cannot express him or herself. What would they want?

Most of us would want to the pain to go away. Certainly that is little enough to ask when these people have already lost so much. We can’t make our loved ones with dementia well, but we can strive for contentment. Contentment relies on pain control along with other factors so it’s vital to do what we can.

Carol is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. She runs award winning websites at _ www.mindingourelders.comand www.mindingoureldersblogs.com. On Twitter, f_ollow Carol @mindingourelder and on Facebook: Minding Our Elders

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