By Kate Swaffer
At the age of 49, I was diagnosed with a younger onset dementia, and was immediately told to ‘go home, give up work, give up university, and to live for the time I had left.’ Over the next few months, this negative prescription of disengagement from living continued, and followed with being told to “get my end of life affairs in order, and to get acquainted with aged care by going to a respite centre one day a month.” At no time was I told it was a terminal illness, not was I give any emotional support for it being one. I quickly coined the phrase, Prescribed Disengagement®, and Trademarked it. Being told there is nothing that can be done, to get our end of life affairs in order, and to get acquainted with aged care, upon diagnosis, is not only unpalatable, immoral and unethical, it is against our human right to be supported to live as well as possible with dementia, not only to die from it. After years of hearing others diagnosed with dementia say they received this same pathway to an immediate pseudo death, I decided it was a human rights issue.
Although I gave up work after to failing my driver’s license test, which I now realise I should have demanded reasonable adjustments to support me to stay at work, I had the sense to stay at university, and, discussing the increasing challenges I was finding with my studies, I asked a lecturer if they thought I should give up university. Luckily for me, their immediate reaction was to say no, keep living the life you want, and we can provide you with disability supports, in the same way we do for all other students with disabilities. After assessment of my disabilities, and strategies put in place to support them, with regular reviews as my symptoms changed therefore causing the disabilities to change, I managed to complete two undergraduate degrees, and have since gone on to complete a Master’s of Science in Dementia Care in 2014, and am currently a Ph.D. candidate at the University of Wollongong. Living beyond dementia is possible, as long as you are supported to do so.
In Geneva at the World Heath Organisation First Ministerial Conference on Dementia, I believe I was the first ever speaker in history with a diagnosis of dementia, to be an invited to present at the United Nations. It was therefore imperative that as Chair, CEO and co-founder of Dementia Alliance International, the peak body and global voice for people with dementia globally, representing more than 37 million people, I spoke up with absolute clarity about our rights. I asked for three things, all of which were included in the WHO Call To Action at the end of the conference.
- People with dementia have a human right to a more ethical pathway of care, including our pre and post diagnostic care, and to more ethical pre and post diagnostic interventions including rehabilitation.
- People with dementia must be treated with the same human rights as everyone else, under the Disability Discrimination Acts and UN Convention on the Rights of Persons with Disabilities
- That dementia research does not only focus on a cure, but also on improving care
One might ask, why was it necessary to place dementia in the human rights and disability rights space? The reality is, in all countries and in different ways our human rights are being breached. For example as few as 10% of people with dementia get a diagnosis in a country such as India. In some western countries, the diagnosistic process is getting better, but the post diagnostic care and support is still in breach of our human rights, and does not include rehabilitation or other interventions to support us to live well. Even the Clinical Guidelines for Dementia in those countries who have them, do not suggest brain injury style rehabilitation, and yet, if I’d had a stroke, I would have been offered every opportunity to get back to living.
My experience is consistent with qualitative studies describing how people with dementia post-diagnosis experience loss of control, decreased activity, poorer relationships and increased negative emotions. This clinical practice post-diagnosis reflects the evidence base with very few non-pharmacological trials for mild dementia, particularly targeting quality of life as an outcome. It is time research started to look at living with dementia, but more importantly that the health care sector supports us to. It is also imperative society as a whole provides us with enabling and empowering disability strategies and support for the disabilities caused by the symptoms of dementia, quite simply, as another human right issue. If we had any other illness or injury causing disabilities, such as losing our legs in a road accident this type of disability support, and rehabilitation would be automatic. It needs also to be for people with dementia, as almost no one is at end stage and actually dying when they are first diagnosed.
I continue to choose to Live Beyond Dementia, and this would actually be relatively easy to translate into practice through provision of clinician training, studies into Prescribing Engagement, as opposed to Disengagement. This could contribute to a paradigm shift in how clinicians manage people recently diagnosed with dementia, and encourage further non-pharmacological research for mild dementia. This would in turn, change perceptions in society about people with dementia, thereby reducing stigma, isolation and discrimination, as well as the fear people have of dementia, which has taken over from cancer in terms of being the most feared disease over the aged of 65. In my next blog I will describe the holistic approach, the disability strategies, and non-pharmacological and psychosocial approaches I employ to live beyond dementia, and which emerging evidence is now supporting.
About the author
Kate Swaffer is Chair and Chief Executive of Dementia Alliance International