Alzheimer’s, Dementia and Pain Management


Caring magazine is an important source for those of us in home care, whether home health, hospice or non-medical services.  At Support For Home, we read each month’s edition.  If you are in the elder care industry, it is a good source to check out.

In the September 2011 publication, Professor Verna Benner Carson talks about “Pain: The Hidden Culprit behind Challenging Behaviors of Those with Alzheimer’s.”  For family caregivers, as well as professionals, there are some important messages we need to absorb.

The first is getting rid of an old myth that folks with Alzheimer’s do not feel pain.  I have no clue how such nonsense got started, but that is what it is.  The problem, as Dr. Carson points out, is that those with moderate to late stage Alzheimer’s “lack the ability to verbally express pain.”  Thus, caregivers tend to misinterpret behavior, failing to respond properly, with an analgesic.  Often, not only is the right response / medication withheld, but a “wrong” response / medication is administered.

Dr. Carson compares the situation with that of very young children, who also do not articulate the existence of pain.

At no time do they say to their parents, “I think I have an ear infection.  Can you take me to see the pediatrician so that I can take an antibiotic?” …  If we could view our elderly with Alzheimer’s through the same lens that we use with our children, we could avoid so much of what we see as challenging behaviors in those with Alzheimer’s.  So much of it is pain.

Dr. Carson points to three pain management scales that are used that may help the caregiver — and the individual’s medical team — to recognize and manage pain. 

The first is pretty well known.  FACES pain scale was developed for use with children who could not well articulate what they were feeling.  There are a number of good sites for this method, including the University of Michigan.

A second method is PAINAD, “a five-item observational tool that looks at a patient’s breathing, negative vocalization, facial expression, body language, and consolability…”  This scale was developed specifically for using with people with dementia.

A third method is the Abbey Scale, also developed for use with late stage dementia patients.

Each method is good to explore, as a caregiver, and to be able to discuss with appropriate medical providers for the individual in need.

Caregiving, home care, whatever we call it, is a complicated, complex effort, requiring more than just a loving heart.  We have to keep educating — and re-educating — ourselves.

Best wishes.  Bert

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