Living well, living better, or living beyond dementia?

Living beyond dementia is now my preferred term to support anyone who has been diagnosed with dementia, as a way of helping them to think about the possibility of living more positively with dementia.

Fingers crossed! I hope it is more helpful, and feedback so far has been really encouraging. The terms living well or living better too easily imply someone may not be living well, e.g. not ‘doing enough’ to be able to live well, or the term living better (or worse) than someone else.

It could easily seen as being too prescriptive, and to either ignore or dishonour the very real challenges of being diagnosed with dementia, which is a terminal, progressive, chronic illness that ultimately ‘steals’ our functioning and capacity.

Alzheimer’s Disease International have a Global Charter, Living well with dementia and for some time, I had thought that term was positive and helpful. However, not only do almost no health care providers tell us how to ‘live well with dementia’, they don’t even tell that living well with dementia is possible.

Public and health care professionals perceptions of people with dementia, which are fuelled by the negative discourse used in the media and by most people when writing or talking about people with dementia, continue to suggest it is simply not possible to live well with dementia, or indeed, beyond the diagnosis.

A colleague and dear friend of mine, Dr Shibley Rahman wrote some time ago on this topic as part of a Facebook discussion with some carers, many who mostly insist we are all ‘suffering’;

“The concept of living well with dementia is not an attempt to sanitise people’s experiences of dementia, nor to be a way by which some feel guilty or uncomfortable that perhaps they are not doing enough themselves, to be able to live well with dementia. It is a concept that is meant to convey there could be more constructive ways of promoting well-being and better quality of life for people with a diagnosis of dementia.”

For some time now, there has been a global conversation around the terms, living well and with dementia, and then on the term living better with dementia, but perhaps, these are not in fact, very helpful terms.

Since being diagnosed with dementia, I have learned to live beyond the diagnosis of dementia. It did not happen easily,  or straight away, and for the first 18 months or so, I was spiralling downhill rapidly, with no thoughts of it ever being possible to live well with dementia, or to continue to excel and exceed my expectations, or to continue to reach any of my goals.

Once I was taught to see the symptoms as disAbilities, and to find strategies to support them to allow me to function, albeit differently to when I did not have dementia, I started to see another way.

As I developed my thinking on dementia through the lens of my own lived experience, including coming up with the phrase Prescribed Disengagement™, I started to think about ways to combat this negative prescription is giving up our pre diagnosis lives.

As a result o this, my ability to live more positively and productively with dementia increased. Yes, I know this will change one day, but that does not matter, as I was born with a death sentence anyway, just as you all were.

Being diagnosed with dementia, was certainly not a reason to die straight away, that is, give up on living positively. I was not at the end stage of the disease, and therefore, to give yup my pre diagnosis life was extremely unhelpful, and I would suggest, immoral and even unethical.

Living beyond dementia is, I believe, what we need to learn to do, and what health care professionals need to support us with. On top of that, if we can get rid of Prescribed Disengagement™, and have health care providers offer us proactive, rehabilitative and enabling post diagnostic pathways of support, with strategies and support for the disAbilities that the symptoms of dementia insist on giving us, many more people with dementia will live beyond the diagnosis, and the current pathway of loss, despair and a focus on our deficits.

I stopped crying a few weeks after being diagnosed, and ultimately took action to actively ditch the PLOM disease (Poor Little Old Me) that I had for a long time after the diagnosis, and to get back on with living.

We are all born with a death sentence, but do we wake up every day working about that and not bother to strive to live as well as possible, or just wake up every day waiting to die?

When we are diagnosed with any other terminal illness, most people strive to live well as well as possible with it, and to fight it, and importantly, the medical community proactively supports us with every medical or holistic step and support to do so.

So, why, when we are diagnosed with dementia, do we want to give up striving to live beyond dementia, upon diagnosis?

Personally, even though a diagnosis of dementia is not as much fun as a birthday party, I do think it is far preferable to accept that a diagnosis of dementia does not have to mean the instant death of the life we had before the diagnosis.

I believe it is very important to keep challenging the perceptions of dementia, as without doing that, nothing will every change.

Author: Kate Swaffer © 2015