A friend responded to my recent blog Language and Dementia which was a discussion about the use of language and the term Living with Dementia, and who should use it. With her permission, I am publishing her email today. She said she is very passionate about the topics and proud to have her name included. Thank you Janet.
From: Janet Brennan
Sent: Tuesday, 19 November 2013 1:57 AM
To: Kate Swaffer
Subject: Living with dementia
I hope this finds you well and not working too hard. I just wanted to let you know that I agree unreservedly with your most recent blog; I just don’t seem to be able to post a reply. I assume you have raised this at a higher level? The reasons I ask; I objected strongly to the words used in a recent draft related to carers and their ‘perception’ of the illness [don’t quote me on the words exactly] but perception was definitely used. I was so angry that I waited 24hrs and then wrote a lengthy email to JJ asking her to pass it on. This she did, and much to my surprise I received an email a day or so later from the leader of the project apologising etc etc.
Kate, I agree the title Behaviour Management is offensive. I don’t care who came up with the name or title, and i doubt they have ever cared for, or are caring with, someone who has Dementia. Dementia is not your typical ‘illness’ and I’m not sure it should even be referred to as an illness: we don’t refer to someone diagnosed with Cancer as having an illness..they have Cancer.
First things first:
1. Dementia must be accepted and acknowledged as a terminal condition,
2. Dementia must be accepted and acknowledged as a condition that doesn’t just affect oldies, doesn’t ‘just’ affect the afflicted, doesn’t always manifest itself in the same way, and
3. Dementia must be accepted and acknowledged as a condition over which the afflicted has very little (if any) control.
When the above occurs then perhaps, just perhaps, someone might accept and acknowledge that you can no sooner ‘manage’ dementia behaviour than an umpire could ‘manage’ the behaviour of John McEnroe on the tennis court. Alas, when the opponents and others acknowledged that this ‘behaviour’ was McEnroe’s way of communicating anger, & frustration did they finally accept (not necessarily agree with) his rationale.
Finally, until society acknowledges that Dementia is a progressive, non voluntary, poorly understood (by public) terminal illness, that doesn’t discriminate by race, colour, sexuality or creed how can we possibly begin to understand that the ‘behaviour’ being displayed by the person in front of them is neither premeditated nor manageable; it is a spontaneous expression of frustration or communication that needs understanding and facilitation, not management!
Author: Janet Brennan 2013