It has been many years since I trademarked my term, Prescribed Disengagement®, yet, there are still many people without dementia who continue with the 20th Century view and management of dementia.

My medical specialist (a registered, experienced neurologist specialising in dementia and migraines) advised me after the initial diagnosis that there was “no treatment for my type of dementia, and there was nothing he could do other than continue to monitor my deterioration, so that when more external services and supports were needed, there was a record of diagnosis and of deterioration”. Of course, he also ruled out other potential causes for cognitive decline, before handing out the diagnosis of young onset dementia.

One of the reasons my neurologist re-tests me approximately every 18 months (MRI and SPECT scans, and neuropsych assessments) is in part, to support the potential increase in the need for more home or even for residential care services. Every few years a PET scan is added to the assessment. Other medical specialists (neurologist and neuropsychologist) at the Box Hill Memory Clinic in Victoria have also provided second opinions, including re-testing me, and came to the same conclusion. Each time I am re-tested for dementia, my doctor (who passed his exams as a neurologist almost 30 years ago, so is very experienced) re-confirms he still believes it is dementia, even though progression has until recently, been slower than he expected. Each time I am retested, I also have my fingers and toes crossed that it is not dementia, and instead, hope he tells me it is a different condition that is treatable, rather than dementia which is not.

My specialist did not focus on post diagnostic management then or now, but on the diagnosis. Everyone else however, except for the University of South Australia, advised me to prepare for the end.

“Go home, give up work, give up study, get your end of life affairs in order, and start going to [aged care] day care once a month to get used to it.”

This prescription of disengagement, and of giving up on living positively continues, 14 years later, and I repeatedly hear people with dementia describe that it as it happened to them, maybe using different words, but expressing the same. It denies us all hope. I also repeatedly hear researchers, who by the very nature of their research careers, should have heard of it happening by now, refer to hearing about it, as if for the first time. It happened to Christine Bryden and James McKillop and all others in the last century, which is understandable; that it is still happening in 2022 is unacceptably ignorant, and unethical.

The University of South Australia supported me as a perspn with acquired disabilities, and provided disabilty assessments and support, throughout the duration of my degrees.

• The university supported me to keep living, through disability assessments and active disability support.
• Health care professionals and others in the dementia sector still advise people to go home and prepare to die.

That people with dementia and our families and care partners still do not receive adequate, if any services or support is unethical, and unacceptable. What is the point of doing expensive research projects and publishing expensive reports, if so far, the stigma, discrimination, isolation, post diagnostic experiences and so on have not changed. Yes, after decades of doing the same, the sector continues spendin gtiem and money on the same things. That violence abuse and neglect continues to happen in residential aged care, in spite of multiple reports, inquiries, and even a Royal Commission in Australia, is appalling.

The irony of this may not be obvious to you, but it is not lost on me…

The worst part for me as someone formally diagnosed with dementia, and I have heard, for many others diagnosed with dementia, for refusing to go home and wait to die, are the dementia-doubters. For those of us who are not at the end stage of dementia due to being diagnosed earlier, or to self prescribed rehabilitation and to a more positive attitude to living with dementia, there are some who continue to publicly cyber-bully ‘dementia advocates’ (without specifically naming anyone). As if it is not bad enough that family and friends often don’t or won’t believe our doctors.

But worse than that, some medical ‘experts’ have become outspoken dementia-doubters, and even appear to believe they can diagnosis a person with dementia via twitter and other social media platforms, or from listening or reading something by someone who has been medically diagnosed (by one of their own peers) with dementia. This is of course, highly unethical, and I hope very soon, they are individually or collectively not only reported to the medical regulators, but de-regulated. It is also appallingly arrogant, and this blog highlights it goes well beyond attacking people with dementia with public profiles. Being asked to prove we have a condition, or invisible disabilities is, I suspect, unlawful.

As if the ignorance, stigma, isolation, discrimination, and increasing cognitive and other disablities due to dementia are not hard enough to live with…

Live your own life, in your own way…