Hurts all over: pain in dementia

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Renee Kinder
Renee Kinder

“Mommy, I hurt all over.”

Day 2 of the stomach virus last week and my sweet Isaac was seeing no relief.

Day 3 of the stomach virus and Isaac realized how much he missed school.

“Mommy, I miss [Kindergarten teacher] Ms. Clay. Can you call the doctor and please tell her that I haven't seen Ms. Clay in three days and I can't go one more day because I love her soooo much.”

What I realized with this nasty virus was that as the sick day count grew, Isaac seemed equally concerned with how he felt and what the direct impact was on his ability to spend time interacting with those he loves.

And Isaac, whose name, by the way, means “laughter,” is our child who always wears a smile and loves everyone.

Being isolated really placed a damper on that joyful little spirit.

Similarly, last week I received a call from a therapist who was working with a family to provide care to their loved one, a person with dementia.

The family and therapist realized that this individual was experiencing some discomfort or pain that was impacting her alertness due to change in sleep patterns and therefore her afternoon visits with her daughter.

The therapist and daughter were working together to determine the root cause.

The only response that the individual could initially express was, “hurts all over.”

This response is not uncommon as we know historical research shows us that persons with dementia process and respond to pain in a variety of ways. Additionally, response may also have a direct correlation to type of dementia.

What do we know about pain in persons with dementia?

•  Research has shown that people with dementia are at risk of under treatment for pain.

•  There is no evidence to show that they are less likely to have pain.

•  Even in advanced dementia a person will still feel pain but may not recognize it or be able to respond in a normal manner.

•  A person with advanced dementia may respond to pain by changes in behavior, or mood — e.g. grimacing, aggression, agitation and withdrawal

•  Pain in people with dementia may interrupt sleep patterns of people with dementia

According to an article published by the National Institutes of Health there is conflicting evidence from neuropathological, neuroimaging, experimental, and clinical research regarding the impact of dementia neuropathology on pain processing and perception.

Furthermore, some research suggests that atrophy of gray matter appears to lead to an increase in pain tolerance, while white matter lesions result in a decrease in tolerance.

So, what should we as caregivers look for when assessing potential causes of and onset of pain in the persons we serve?

Based on the Alzheimer's Association's Campaign for Quality Residential Care, assessment measures should occur routinely, including when residents have conditions likely to result in pain and if residents indicate in any manner that they have pain.

They also state that effective pain assessment addresses:

•  Site of pain

•  Type of pain

•  Effect of pain on the person

•  Pain triggers

•  Whether pain is acute or chronic

•  Positive and negative consequences of treatment

•  For those residents who cannot verbally communicate, direct observation by staff consistently working with them can help identify pain and pain behaviors

•  Observing residents when they move may uncover problems that may not occur when they are at rest. The problems may require referrals to occupational or physical therapists.

How did the therapist and family determine pain in our patient complaining of “pain all over”?

They utilized multiple communication techniques known to be successful in persons with dementia to better understand what level of pain the person was experiencing and where the pain was localized.

For example, they asked questions with a closed end versus open end.

Instead of saying, “Where are you hurting?” they asked “Does your stomach hurt, yes or no?”; “Does your head hurt, yes or no”?

Also, they used visual cues pointing to various parts of the body with questions provided by the familiar voice of daughter, “Mom, does it hurt here? How about here?”

Using these techniques helped them to not only determine the root cause of the pain but also to develop a plan together to meet the person's needs and collectively improve ability to interact with loved ones.

As for Isaac, the virus took a week to clear his little system, and thankfully he is back to his cheerful old self. He entered school Monday morning with a smile on his face, open arms for giving hugs, and plenty of laughter to make up for his painful week away from those he loves.

Renee Kinder, MS, CCC-SLP, RAC-CT is Director of Clinical Education for Encore Rehabilitation.  Additionally, she serves as Gerontology Professional Development Manager for the American Speech Language Hearing Association's (ASHA) gerontology special interest group, is a member of the University of Kentucky College of Medicine community faculty, and is an advisor to the American Medical Association's Relative Value Update Committee (RUC) Health Care Professionals Advisory Committee (HCPAC).

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Rehab Realities is written by Renee Kinder, MS, CCC-SLP, RAC-CT.  She currently serves as Director of Clinical Education for Encore Rehabilitation and acts as editor of Perspectives on Gerontology, a publication of the American Speech Language Hearing Association.

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