Ouch, that hurts! It’s a quick way to verbalize that you don’t feel well. Let’s say you have a headache, so you grab two tablets of acetaminophen and in about 30 minutes you are feeling better. Easy fix, right? What if you couldn’t say, “I have a headache” and you weren’t able to get yourself pain reliever? If you are dependent on others for care, your caregivers must learn how to be a behavior detective.  If the caregiver doesn’t have great observation skills, the response time in addressing pain can be long.

According to the Mayo Clinic Health System, 50-80% of those with moderate to severe dementia have pain daily. https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/dementia-related-pain-and-caregivers 

There are many reasons why someone can’t verbalize how they are feeling. Most of the clients I assist have a cognitive impairment, such as dementia. As dementia progresses, they may develop expressive aphasia where they can no longer form words or sentences. How frustrating and helpless that must feel. Non-verbal signs related to pain and dementia patients tell a story.  Learning to notice these clues are paramount in determining if someone is in pain.

Don’t just assume that any of the non-verbal signs listed below are a normal part of the dementia diagnosis.  It may not be and it’s the responsibility of the caregiver to rule out a medical problem first and consider pain and dementia patients.  I have witnessed caregivers consoling their loved one when the person living with dementia is sad and crying, and that’s wonderful.  The problem lies when the caregiver, at no fault of their own, believes this change is related to sadness rather than to pain and dementia patients.

I’m passionate about teaching caregivers that it takes practice to learn non-verbal cues that the person with dementia may be trying to relay.  Don’t expect to learn it overnight because some of the cues may be very subtle; making it easy to miss.  Sometimes writing down the changes that you observe is helpful in determining the frequency so you can identify if this is an isolated event, or ongoing.  

Pain and Dementia Patients:  Observe for these non-verbal signs:

Crying

Grimacing or looking sad

Holding a painful area

Guarding a painful area

Moaning or humming

Anxiety

Agitation or anger

Pacing

Fidgeting

Not wanting to move

Change in walking

Confusion

Decreased appetite

Insomnia

Becoming withdrawn

Sweating

Shortness of breath

An increase in blood pressure, pulse, or respirations

As you can see, pain and dementia patients can be displayed differently than someone who does not have a cognitive impairment.  Being able to recognize these non-verbal signs or cues as a change in condition for someone who cannot verbally communicate will help secure treatment. If you are the caregiver, know your loved one’s typical behavior, demeanor, and posture. When there seems to be a difference, pause, and take a closer look.

Has the person living with dementia been around anyone who has been sick, or has anyone in the home been ill?  Exposure to an illness, such as a sore throat, could be contagious.  Does your loved one have any nasal congestion or a cough?  They could also have an earache that they cannot communicate to you.

Consider chronic health conditions that may cause pain, such as arthritis, constipation, or heart conditions. Even though a person living with dementia may be taking medication to treat the chronic health conditions, it doesn’t necessarily mean that the condition is well controlled.  If you notice any of these non-verbal signs that are not typical, you should put on your detective hat and investigate. 

If you feel like you need help managing pain and dementia patients, you are not alone.  When changes occur, most caregivers will seek advice from a professional who has experience in this field.  Learn more about dementia care and education services from Wellness Strategies Group https://wellnessstrategiesgroup.com/services/.