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.