It was encouraging to see a my theory of Prescribed Disengagement® being discussed in a presentation at the LASA Congress in Adelaide this week, where on Sunday I joined a Panel discussion, “Is Australia Ready for the New Era?: A Candid Discussion around what the aged care system will look like, how it will be funded, what consumers want as ageing is transformed”. Unfortunately I did not have time to attend the whole event.
Whilst we found no evidence of Prescribed Disengagement® in the literature in a paper published earlier this year (Low, Swaffer, McGrath and Brodarty, 2018) titled Do people with early stage dementia experience Prescribed Disengagement®? A systematic review of qualitative studies, the anthropological and anecdotal evidence for it abounds.
The screen shot above is just one example of it, from a tweet dated 11 August 2018. If you do a search on Facebook or Twitter, or read blogs written by people with dementia, of which there are now too many to list here for fear of missing one, you will find clear and recent evidence of it. Little has changed in ten years for anyone receiving a diagnosis of dementia.
Most of the conferences I attend, of which is definitely too many, many of the presentations about research for improving care or other projects about various forms of non pharmacological ‘therapy’ sound like ‘band aids’ to the real problem, as whilstever we are still being actively advised to prepare for the end, rather than supporting us with a human rights based approach to live with our acquired cognitive disabilities caused by dementia, nothing will change.
We all have a moral and ethical duty to change what happens at the time of the diagnosis, and just after, by providing positive support to live well, that includes rehabilitation and support to remain active in our communities, including employed or volunteering.
Until we do that, I’m doubtful much will change.
Pingback: Brain Health, 2 D-words and HOPE |
Pingback: More on the realities of advocacy |
Good work Kate. You are making a real difference in the world.
LikeLike
Thanks girl friend! xx
LikeLike
HI Kate, Congratulation to your great impact regrading your theory of Prescribed Disengagement®. It brings a lot of insights to different practitioners and the one who is concerning the rights of persons with dementia. Indeed, I have left several messages to you before and I am afraid that I got loss of your contact. Would you mind letting me know your current email or please reply me with your time convenience. I am starting to plan inviting you to Hong Kong for further sharing and collaboration. Thanks for your reading and I am looking forward to hearing back from you~~~~~~ I am Kenny Chui from Hong Kong ^^
LikeLike
Dear Kenny, I haven’t forgotten you, and you don’t have the wrong email! I’ve just been too busy and it forgotten to reply. I’ll search for your email soon, and respond there. Take care, and my sincere apologies for my tardiness. Kate
LikeLike
To me it is glaringly simple. These characters who administer dementia care settings need to learn that if they set the expectations the situation becomes a a self fulfilling prophecy. That is if they want their clients to be finished off sooner then all they need to do is underestimate their clients by expecting that they slow down and do less because they are too old. Following the assumptions inherent in prescribed disengagement must be one of the most agest things that any care system can do and in my view helps the system to advance the level of dementia in their clients sooner. I am a teacher and I use this analogy by stating that that Teachers know that if they get a class that is problematic all they need to do is create a bigger problem by underestimating their charges. It is my view that a similar set of factors applies to dementia care settings.I don’t know whether the way I would approach this problem would work but the first thing I would do is not be bluffed by the assumptions of prescribed disengagement if I had to care for ;people in a dementia care setting. At the risk of being too plain with my words I am going to say that an approach based on prescribed disengagement is “complete cultural poppycock” or the slavish following of a timetable that that expects a hastend end.
LikeLike
To me it is glaringly simple. These characters who administer dementia care settings need to learn that if they set the expectation, in many cases prescribed disengagement becomes a self fulfilling prophecy. If they want their clients to be finished off sooner then all they need to do is underestimate their clients by expecting that they slow down and do less because they are too old. Following the assumptions inherent in prescribed disengagement must be one of the most agest things that any care system can do and in my view helps the system to advance the level of dementia in their clients sooner. I am a teacher and I use this analogy by stating that that Teachers know that if they get a class that is problematic all they need to do is create a bigger problem by underestimating their charges. It is my view that a similar set of factors applies to dementia care settings.I don’t know whether the way I would approach this problem would work but the first thing I would do is not be bluffed by the assumptions of prescribed disengagement if I had to care for ;people in a dementia care setting. At the risk of being too plain with my words I am going to say that an approach based on prescribed disengagement is “complete cultural poppycock” or the slavish following of a timetable that that expects a hastend end.
LikeLike
I agree Colin… it is a self fulfilling prophecy! If all you are told is there is little or nothing we can do for a person with dementia, most just go home and meekly wait to die! Thankfully that is changing as we younger advocates refuse this poor advice!
LikeLiked by 1 person
A quick tip – if your comment doesn’t appear for a few days (sometimes even longer), it’s usually because I’ve been offline, so possibly you just need more patience with me, rather than adding your comment again. Sorry I’m not as focused here as I used to be.
LikeLiked by 1 person
We all need to fight this good fight, and this underlines the fact that all your hard work does get through x
LikeLiked by 1 person
Thanks Julie xx
LikeLike