Caring for Non-Speaking Loved Ones in Pain

What does pain look like in a person who cannot speak?  Most often with our son Nicholas, it looks like this:

When his smile suddenly turns to a 'stricken' look, we know that Nick is in pain.  There are other signs too - sweaty palms and feet, high heart rate, staring, not responding in his usual way, and whispering "ow".  We know the signs of Nicholas' pain and we know how to soothe him.

But what about pain in those we love who have severe communication and cognitive impairments - loved ones with Alzheimer's, severe dementia, and certainly severe cognitive disabilities?  They may feel pain, but sometimes cannot express it in ways that family members and medical professionals can understand.

Professor Peter Passmore can help us understand and assess the pain in our loved ones.  He is a Professor of aging and geriatric medicine at Queen's University, Belfast and together with Emma Cunningham, a clinical research fellow at the same university, he developed a simple guide to recognizing pain in patients who have severe cognitive and communication disorders. 

Their research shows that pain in dementia patients is routinely under-diagnosed and under-treated. Here are some symptoms of pain in loved ones who have cognitive and communication disorders:

Facial expressions: frown, sad, frightened, grimacing Verbalizations: sighing, moaning, groaning, grunting, chanting, calling out, noisy breathing, asking for help, verbally abusive Body movements: rigid, tense body posture, guarding, fidgeting, pacing, rocking, restricted movement Changes in interpersonal interactions: aggressive, combative, resistive, less interactive, inappropriate, disruptive, withdrawn Changes in activity patterns: refusing food, appetite change, change in sleep, cessation of routines, wandering Changes in mental status: crying, increased confusion, irritability, distress

Professor Passmore recommends the Abbey Pain Scale as one simple but effective tool to 

assess and keep track of pain in a non-speaking loved one.

There are many reasons that pain management can fail a person who has severe disabilities 

and communication difficulties.  We are fortunate that Nicholas can say a clear 'Yes' and 'No'.

So, Nick can tell us if he has 'no pain', 'some pain' or 'a lot of pain'.  But because he very 

afraid of going to the hospital if he reports a lot of pain, often he will simply fib and under-

report his discomfort.  We need to watch carefully for subtle signs and we give extra pain 

medications based on what we observe.

When we watch our loved ones who cannot speak, we realise that what they experience and 

what they express are not the same thing.  We must watch carefully, identify indicators and 

develop our own custom pain scales the best we can.  Caregivers have many roles and being 

the voice of pain for someone you love is one of the most vital.