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In the 1970’s when I commenced my nursing, most people with dementia were diagnosed nearer to the end stage of the disease process, and little was known about dementia. In fact, I doubt I had more than 1-3 hours education on it, if that much, and it was known then as senile dementia or pre-senile dementia. Patients, as we called them then, even in the geriatric wing where they were permanent residents, required end stage management. Over the last few years, perhaps in particular since the previous UK Prime Minister David Cameron’s Dementia Challenge in 2009, there has been a global push for early diagnosis, including it being incentivised in the UK.

This has been helpful, but what is still happening in the sector is people with dementia are being managed post-diagnosis as if they are end stage. There is still such a disbelief that anyone can live well with dementia, and most who are report they are often ‘accused’ of not having dementia. I am one of those people, and was diagnosed with dementia aged 49. Following diagnosis, everyone in the dementia sector, including health care professionals advised me to “give up work, give up study, to get my end of life affairs in order, to get acquainted with aged care, and to go home and live for the time I had left”. I was diagnosed early with dementia and at the time was a working mother of two teenage boys, and studying a double degree. It is not even logical that the next day, I was not capable of doing anything.

Some time after my diagnosis I termed what happened to me, and what I have heard happens to almost everyone, at any age or stage, 'Prescribed Disengagement®', and believed in it enough to Trademark it. The cost of this is a sense of hopelessness for everyone, as well as a prescription of ‘suffering’ for the person diagnosed, and the development of learned helplessness as their families take over from them, which, they are told they will have to do and which often also causes the more severe care partner stress, a loss of hope for their own future as well, and what appears in many to turn to martyrdom. It is unhealthy, unhelpful, and in my opinion is not only unethical; it is a serious breach of our most basic of human rights.

It is clear that the dementia sector must stop managing people with dementia who are diagnosed early with the disease, as if they are late stage, with little life to live. We have a human right to be supported to remain employed if we are still working when diagnosed, a human right to rehabilitation, inclusion, and also to full support for the disabilities caused by the symptoms of dementia, in the same way any other person living with disabilities is proactively supported. Dementia enabling environments are also part of our rights, in the same way that all buildings have wheelchair ramps and hearing loops. The ADI (Alzheimer's Disease International) global charter of ‘I can live well with dementia’ needs to become more than rhetoric.* Those who care for people with dementia must now support them to do just that.

Kate Swaffer © 2016 (Kate's own personal blog can be accessed at: https://kateswaffer.com/)

* Details of Alzheimer's Disease International global charter can be found here: https://www.alz.co.uk/global-dementia-charter