Australia, and many other countries have until recently had no national guidelines for the post diagnostic support of people with dementia, which I see as more than a failing, but as unethical. However it is encouraging to be able to report that the national clinical guidelines recently drafted went out to the public for comment before they are to be finalised, hopefully by October later this year. They are, disappointingly, I believe, still lacking in the prescription of authentic and comprehensive brain injury style rehabilitation and other proactive interventions and disability supports for people with dementia.
Many countries do have national dementia strategies, including Australia. Scotland of course has a National Dementia Strategy, and is often ahead of the rest of us. And talking of things Scottish, I refer you to an interesting article written by a Psychiatrist in Scotland, Dr Peter Gordon, Early detection of dementia: RCPsych result, for further reading. The UK of course, also has a National Dementia Strategy, also worth a look, although I’ve not been able to find one for Australia, the Federal Government here made dementia the 9th Major Health Priority a couple of years ago.
It reads as if there is a lot happening, but in reality, as a consumer, nothing much has changed as far as improving outcomes, and care of people with dementia and out families. Talk is cheap, policy is expensive, so if advocacy organisations and governments are in fact, spending so much money on National Strategies and Guidelines, they really should be making a difference to us, the consumer.
The early detection and diagnosis of dementia has been on the agenda for some time, and yet, the re-classification of dementia, to minor vs major, or MCI, which can be early dementia, but does not always lead onto a dementia, is confusing not only for the professional sector, but for the public.
Dementia Alliance International is currently working towards producing a statement to help clear up the confusion we are all having around these issues. National Strategies, Clinical Guidelines, International Standards based on outcomes, changes to the classification of dementias and MCI are all very confusing, especially for those of us in the lived experience space.
The challenging issues surrounding diagnosis, ethical post diagnostic support, and enabling and rehabilitative pathways of care based on social and disability models, rather than the medical model, all desperately need to be visited. Some are, but so much is missing.
The last few months I’ve also been involved in an International Consortium for Health Outcomes Measurement (ICHOM) Dementia Working Group, where standards and guidelines are being decided, based on patient/client outcomes. It will be very disappointing if authentic rehabilitation, including speech pathology is left out of this as well, although in fairness to this project, the focus of this international project is slightly different to clinical guidelines.
To be offered only Prescribed Disengagement, that is, being told to get our end of life affairs in order, to get acquainted with aged care services, and offered a few tips and help sheets, is not only unpalatable, it is in my humble opinion, completely unethical. We must be supported with disability support and rehabilitation to manage the many changes in our functioning caused by dementia, in the same way people with any other illness or disabilities are. That is, after all, a basic human right.
We are, as people with disabilities, also legally entitled to these supports.
Based on this Alzheimer’s Australia Help Sheet, What are the early signs of dementia?, the early signs of dementia can be very subtle and may not be immediately obvious. Some common symptoms may include: Progressive and frequent memory loss, Confusion, Personality change, Apathy and withdrawal and Loss of ability to perform everyday tasks. Other more specific symptoms can include acquired dyslexia, primary progressive aphasia, executive functioning, changed emotions, language difficulties such as finding the right word, comprehension and understanding conversations, visual depth perception and other visual changes, taking longer to complete tasks, and finding difficulties following instructions.
If the person had one or more of these disabilities as a result of a stroke, we would automatically provide brain injury rehabilitation, and then disAbility supports to allow the person to function as well as possible.
My Neuro Physiotherapist, also an academic at Flinders University was involved in writing the clinical National Stroke guidelines, and said to me recently, many of the therapies and interventions they included in the National Stroke Guidelines were not evidence based at the time of inclusion, but since being included [and therefore used], they have become evidence based.
Too often anecdotal evidence, and common sense are ignored in health care, which negatively impacts on providing and improving better care, and on a patients well being and quality of life.
We must also offer the same supports and strategies to live beyond a diagnosis of dementia, for as long as possible. This will enable us to continue to live at home for longer, improving our quality of life and perceived well being, as well as saving the health system literally millions of dollars.
It is not so much about saving money as it is about improving the lives of people with dementia and their families, and I firmly believe research will eventually support this pathway, in the same way it is now supporting that lifestyle changes can prevent or delay the onset of a dementia, and that brain injury rehabilitation does actually help people after a stroke..
Ps, if you are confused after reading my blog today, so am I…