Sep 19, 2017

Personhood - Compassionate Dementia Care

Personhood in relation to dementia is recognizing the person with the disease as always being a person no matter what the disease has done to their minds.

By Carole Larkin
Alzheimer's Reading Room

Compassionate Dementia Care

Recently I have been exposed to some professionals and their ideas, which makes me smile in agreement and bob my head up and down like one of those bobblehead dolls.

They also got me thinking about the change of culture about Alzheimer’s and related dementia.

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The change is truly picking up steam in the professional dementia care community and, hopefully, will do so in the population at large.

Mind you, I’m not saying that the new thought process is uppermost in the majority view, far from it. What I am saying is that more and more professionals are leaving the doom and gloom view of it and are headed towards the light of (dare I say it?) trying to being as positive about the person with the disease as possible.

Let me explain.

Not long ago I took a 5 week course (along with thousands of people around the world) given by two professors in the John Hopkins School of Nursing, one of the most renowned institutions of learning in the world, especially in regard to the dementias. (If they give it again, I urge everybody to take it.)

It was offered through Coursera and it was FREE.

The two John Hopkins professors, Dr. Nancy Hodgson and Dr. Laura Gitlin, touched on a theory of dementia care they called “personhood”. They worked off of the definition created by Tom Kitwood, a noted expert in psychology.

Personhood in relation to dementia is recognizing the person with the disease as always being a person no matter what the disease has done to their minds. To no longer think of them as a person makes them out to be an object in the other person’s mind. Now that they have become just like an object (non human), their thoughts, words, needs, and in short their whole reason for existence loses all importance.

They become “objectified”, the very worst thing you can do to a person -- deny they exist. How mean is that? Pretty darn mean if you ask me.

Hodgson and Gitlin talked about honoring the current existence, the current life, the current person in dealing with them day to day. This they called

Person Centered Care.

Translated to everyday life, it means talking to them, not about them or around them with other cognitively intact people (especially at the doctor’s office).

It means simplifying choices so that the person can choose what they want, instead of you choosing for them.

You get my drift.

There are a million ways every day we can deny the cognitively impaired person their “personhood” and their dignity. And we do.

My point here is that now there is a movement among professionals and within portions of the general public to change the way they see, react to, think about and treat the person with a dementia.


It’s about time.

Of course there is a long way to go, but at least the concept is taking hold. Lots of people are out there in the public eye talking about and teaching people (professionals and non professionals alike) how to do this.

It’s what Bob DeMarco means when he says, “Take a step to the left and enter Alzheimer’s World and look through their eyes”.

It’s what Max Wallack means when he says the person is “more there”.

It’s what Bill Thomas and Dr. G. Allen Power base their caregiving concept on in their Eden Alternative Program in practice in memory care communities around the country. It’s what Judy Berry of the revolutionary Lakeview Ranch communities  in Minnesota practices every day in her communities. It’s what Dr. Richard Taylor has been talking about and teaching for years now.

There also are a number of other eloquent people with one of the diseases speaking out like Richard does, which I don’t have time or space to list here. They are nonetheless doing the crucial work of trying to educate us so that we can change the culture to one of “personhood”.

It’s what Lori LeBay and others push on their blogs, radio shows and in other media.

I add my voice to theirs in my own way. It is a baby step, but still hopefully contributing to foster the culture change we hope for.

I pledge from now on to cease using the word “caregiver” to refer to a family member (and yes, even professional aides, etc…) and refer to them now as a “care partner”.

To use the word “caregiver” implies that there is a “care receiver”, who automatically is looked at as “less than”, “deficient” and all those other words that deprive them of their personhood, and turn them into non-humans.

After all, the person with the dementia is a partner in what is going on, so I will now recognize that in the words I use every day, and I hope that you do too.

Furthermore I will urge care partners to move from self (seeing the world through my eyes, my vision of what is and what should be, my loss, my anger at the person and the disease, my fear, etc.) to less of my self (self less) and really trying to put the person with the impairment first in all my responses to them.

Really trying to see the world through their eyes, feeling their fear and confusion and misunderstanding first, before my feelings.

Really trying to feel their anxiety of not knowing what to do next, their grief in the loss of their thoughts, and their memories and their personhood (in a sense) first, before my own feelings.

I hope that you too will pledge to urge those that you see taking away a person’s personhood to also try to move from self to self less.

Carole Larkin is a private Dementia Care Consultant with over 10 years of experience in Dallas Texas. Carole earned the Alzheimer's Reading Room seal of approval for her great work and the ability to understand how dementia patients think and feel.

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