Compassionate Care, Dementia in the 21st Century

Accept, Affirm, Connect

The next of the five essays by Stephen Post is Compassionate Care,Dementia in the 21st Century. I have posted it in my Archive, click on the title to go there to read it.

The article features this theme among others:

We need to preserve our own dignity and can only do so as we conserve the dignity of the deeply forgetful.

He goes on to say

The first principle of love for persons with cognitive disability is to reveal to them their value by providing attention, concern and tenderness. Any experienced carer knows that the person with dementia, however advanced, will usually respond better to someone whose affect is affirming in tone.

Stephen Post advocates the need to connect with the person afflicted by Dementia, doing so in a positive loving way. Accept the afflicted as that person is, not as he was. Love the person for who they now are and communicate that to him/her. Recognize the need the afflicted has for that and to have it shown in a loving way.

A friend with Dementia noted in material written by her: “Remember me as I am not as I was.” She went on to say “being with other AD peers offers me the opportunity to communicate and share as the person I have become rather than lament the person I used to be.”

Too often people who knew us then and know us now articulate a silent reserve seeing what we no longer are. The reserve although silent, screams loudly and leads to stilted treatment of us.

Is it more difficult to have a progressive dementia robbing us of our body and mind? Or, is it worse to find yourself shunned, abandoned, relegated to a second class person in our society of swells and successes. Love is the verb that our society does not use as it should. Love in our culture is a noun; we wait for it to happen. Sometimes we wait forever. This attitude reflected by so many of our relationships leaves those of us with Dementia completely outside the mix.

Stephen Post lays this out quite nicely in this second essay.

A Change of Subject!

The five essays I am posting and commenting about seem to emanate from writings associated with a book written and first published by Post in the 1990’s and excerpted  in part for the essays which appear to have been written for the change of the millennium. They reflect the attitude and treatment of Dementia at the start of this 21^st Century.

The start of this century as celebrated by us was the year 2000. It is now 2012. It appears that 12 years ago the attitude and treatment of Dementia was the same as it is now. The counsel and advice as well as the views of Stephen Post were on the mark then. They are on the mark now. Unfortunately little has changed with the attitude and treatment of Dementia. This is troublesome.

Before I was aware of the time this material was written I was impressed by its currency and copied it for posting. I was so impressed by the material I ordered Post’s book: The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying. On reading it I found a couple of comments that seemed dated. I looked at the copyright and was floored seeing it dated 1995 with a second edition dated and copyrighted 2000.

Should this matter? I kept reading and so far it has not. The views of Stephen Post in 1995 and 2000 address the same problems with Dementia now as they did then.

I became current about Dementia when first diagnosed with it in 2006. This was six years after Post’s second edition re-write and six years more today. Post’s writing voices the same concerns that mine have been since learning about Dementia from study with the foundation of personal experience of it. 

We were missing it then we are missing it now. Although many talk the talk and walk the walk about Accepting, Affirming and Connecting with folks with Dementia, those of us with Dementia remain in the Shunned Booth of Life.