Notes from John Swinton on Dementia and Being Forgotten

On Monday morning of the 2012 Summer Institute on Disability John Swinton presented on Theology and Dementia, a topic he has also written about in this blog post titled, What does it look like to be remembered by God?

The question that someone facing dementia may ask is, "Who will hold my soul?". My favorite thought from John's presentation was that the problem with dementia is not that people forget, it is that they are forgotten. 

There are some complicated questions that arise from considering dementia. For example, does dementia destroy personhood?  Do you remain yourself when you experience Does it take away what is core to who you are? 

To answer those questions we must first answer the question, "Who are You?"

John told the story of Peter who has dementia was told who was taken into care and now lives not only in a different place, but also with strangers. Many of his friends have abandoned him. He relayed some of the negative attitudes that some people have towards persons with dementia:

  • "You should just divorce him" (told to the spouse of a man with dementia) based on the idea that a person is different that when you first married him or her.
  • "Technically, she's dead anyway..." 
  • "Alzeimer's! Definitely time for the blue pill (euthenasia)". 

Steven Sabat states that there are three selfs: 

  1. Self of personal identity expressed as me, myself, my, mine, and our.
  2. Self of your physical and other characteristics-  height, weigh, beliefs, politics. 
  3. Self of the social persona that you have or take on. You need other people to achieve self 3. 

Is it possible to be a valuable person if nobody values you? 

John referenced Psalms 88:5-10 as descriptor as how people with Alzheimers are treated:

 5 Free among the dead, like the slain that lie in the grave, whom thou rememberest no more: and they are cut off from thy hand.
 6 Thou hast laid me in the lowest pit, in darkness, in the deeps.
 7 Thy wrath lieth hard upon me, and thou hast afflicted me with all thy waves. Selah.
 8 Thou hast put away mine acquaintance far from me; thou hast made me an abomination unto them: I am shut up, and I cannot come forth.
 9 Mine eye mourneth by reason of affliction: Lord, I have called daily upon thee, I have stretched out my hands unto thee.
 10 Wilt thou shew wonders to the dead? shall the dead arise andpraise thee? Selah.

He also referenced a line from the Poem, Who Am I? by Dietrich Bonhoeffer:

Whoever I am, Thou knowest, “God, I am Thine

It is important that we remember others and remember well. 

For more coverage, check out these notes from Bill Gaventa