I have a friend who is eighty-eight years old.  She has advanced dementia, and she has become my good friend.  Recently, her doctor changed the dosage for her medication.  

Because she lacks the cognitive skills that would allow her to remember the details of the medication change (she is unable to remember or bring to mind which pill was changed and why and how the dosage changed) and because she lacks the cognitive skills to decide to be okay with the medication change, she has been left in a state of intense emotional distress.  

I am certain that her well-intended physician, when seeing my friend’s blood work results, used her best judgement to change the dosage.  The physician, no doubt, hoped to prevent future health issues.

The problem, though, is that this simple change has severely affected my friend’s quality of life.  She is desperate to make sense of the change, and because of dementia, making sense of the change will never be possible.  So my friend is left in a state of emotional turmoil; a combination of not understanding the medication change, and an inability to solve her distress about it.

This is not the first time I have pondered society’s approach to dementia.  I have wondered why we are doing mammograms on women with advanced dementia and advanced age.  I have wondered why we are doing skin checks and skin procedures on folks who will never be able to understand what the heck is going on when some strange person does something on their skin that hurts a lot.  

I have wondered why we seem to be working so hard to prolong length of life, when the very efforts to preserve length of life for people with advanced dementia often give them tremendous physical and emotional discomfort.

Instead, I believe we are doing the best job of loving people well when we more quickly adopt an attitude of “comfort care.”  That by the time someone is experiencing dementia that requires consistent support, we should ponder long and hard about the value of a medical test, or a medical procedure (including neuropsychologic assessments of cognitive skill).  My observation is that many of these tests and procedures put the person with dementia in a place that is the antithesis of comfort.  And I am thinking that is not really fair.  

Comfort care looks like us focusing on keeping our loved ones “dementia-comfortable”; avoiding situations that may produce discomfort.  And when an uncomfortable situation is absolutely necessary, we tweak our approach so that we help the situation become as dementia-comfortable as possible.  

Folks with dementia need us to diligently guard and protect their comfort, which directly impacts their quality of life.  When the quality of life is better for our folks with dementia, it also improves the quality of life for those taking care.  And just a thought: I am just thinking that a “comfort care” approach should also apply to caregivers.  We will ponder that together more later.

Happy to be a voice,

Jill

©Jill Couch