One of the myths of dementia is that people diagnosed with it can’t live well after the diagnosis, and the concept of maintaining a pre diagnosis life is not possible.
However, ADI’s Global Charter states: I can live well with dementia.
But the problem with that, is nobody, no organisations, no service providers, no doctors, no researchers, no clinicians, are yet telling us how to do that. T
hey still direct us down the pathway of Prescribe Disengagement™, and man simply do not believe it is even remotely possible to “live well with dementia”.
Living well with dementia is a ‘tricky’ term, and there has been a global conversation, by people with a diagnosis of dementia, about whether it is in fact, not only about whether it is, or is not possible, but if it is even appropriate to use the term, living well with dementia.
Chris Roberts from Wales and I have said many times it is more about living better with dementia, and what I (and I think Chris) meant by that, was living better than the public perception of what others believe is living with dementia. Chris even influenced the title of Dr Shibley Rahmans latest book to Living Better with Dementia. Mostly, the public perception is that it is not possible to live well and we are ‘suffering’, all of the time.
Living better could simply suggest that the way I am living well or better, implies I am living better than someone else. This is not the case either, and is also not what I mean. Living well, or living better, is too reliant on what you, or others think that means, and can too easily used comparatively, which is unhelpful and could even be hurtful.
Perhaps though, this kind of debate, or discourse, is not necessarily helpful either.
The reality and data clearly tells us many more people are living in their own homes in the community, than in residential aged care. What we see is the public image in the media of people whose lives are devastated by the ‘suffering’ of dementia, but there is so much more to our lives.
In between the sadness and the deterioration of symptoms, many people with dementia continue to live reasonably well, in spite of dementia. With any terminal disease or chronic illness, there are bad days, but not every single day is always like that.
In this excerpt from my first book about dementia, What the hell happened to my brain, to be released late 2015 or early 2016, and which is already available for pre-ordering on Amazon.uk, I wrote this;
Subsequent to my being diagnosed with younger onset dementia at the age of 49, health care professionals and service providers all told me the same thing: “to give up work, give up study and go home and live for the time I had left.” On the way, it was also suggested I put my end-of-life affairs in order – even though at no time was I told dementia is a terminal illness. I was also told to get acquainted with aged care, including selecting a respite day care and residential care facility, sooner rather than later, so I could become used to it. My husband was told he would soon have to give up work to become a full-time family carer.
Very quickly I termed this Prescribed Disengagement™, and thankfully I eventually chose to ignore it. Because Prescribed Disengagement™’ is a term I came up with, I was advised to trademark it before someone else did, and hence have done so.
It seems extraordinary that one day I was studying a tertiary degree, working full-time, volunteering, raising two teenage boys and running a household, doing the shopping and gardening, living a very busy and full life with my husband and the next day, told to give up life as I knew it and to live for the time left.
All of this advice was well-meaning, but it is based on a lack of education and preconceived expectations and myths about how people can or as it seems is clear, misperceptions that we can’t live well with dementia. This sets people with dementia up to live a life without hope, without any sense of a future and destroys the notion of well-being.
This Prescribed Disengagement™ sets up a chain reaction of hopelessness and fear which negatively impacts a person’s ability to be positive, resilient and proactive, ultimately affecting their well-being and quality of life.
Without hope, it is a wonder anyone of us bother to make an effort to live well.
After the diagnosis, when you are feeling like the darkest dark WILL put out the brightest candle, then being told to go home, get acquainted with aged care and get your end of life affairs in order, can only make you and everyone around you, believe there is NO hope.
Prescribed Disengagement™, lowers a person’s own expectations about how they can live well, and it lowers others’ expectation about how we can function and live, including employers, doctors, health care professionals, service providers, our families and friends, and the community.
For example, if I had experienced a stroke, I would have been authentically rehabilitated and supported to return to work, in whatever capacity possible, with reasonable adjustments if required.
For people with younger onset dementia, this is extremely important and potentially could keep us living better lives for much longer, including continued employment. It has the potential to completely disable us emotionally, leading us to learned helplessness.
Living well at any time of our life is probably what everyone wants, but add in the diagnosis if dementia, and the Prescribed Disengagement™, and many of us think we can no longer live well, so we might as well die now, in the sense that many just give up fighting for their lives. Although it requires a lot of hard work to supporting ourselves with non-pharmacological interventions, and on remaining positive, and meaningfully engaged is not a cure, ‘fighting for our lives’ in any way we can think of, does improve our quality of life and perceived well being.
Living beyond the diagnosis of dementia is perhaps the right term, and the key to improving the lived experience.
There is a growing body of research to support this, and as we are, in reality, perhaps further away from a cure than we thought we were 10 years ago, it is imperative we strive to better than expected of someone with dementia, for as long as possible.
I call it the Olympics of my life, and although I am terrified of the day when I am no longer independently functional, for now, it has increased my sense of well being, and my Ability to function in spite of, and alongside, the symptoms of dementia and the disAbilities it has given me..
I believe it is important I make every effort to live beyond the diagnosis, and say to myself every single day;
Why die upon diagnosis, when I wouldn’t have given up [told to fight for my life] with any other terminal or chronic progressive disease?