Living with dementia

psychologyhealth_dementia1A 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

Hi Kate,

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

8 thoughts on “Living with dementia

  1. Damn ignorance! That’s the problem… Trouble is, unless you have or a loved one has dementia, are you bothered? It’s how we change that, that’s the issue and with dementia numbers on the rise, we need to do that soon. Better that people are aware and educated about it now and how we make life better for those that have it, rather than playing catch-up when more and more of us are suffering.

    Having said that, when family members put their head in the sand, how can we get the wider audience to give a damn?


    • Unfortunately we usually don’t know what we don’t know until we experience it, unless we become proactive in our learning… and even then, the message may not really get through, until the heart wants it to.


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