One of the myths about dementia is that people diagnosed with it can’t live well with it, and the concept of maintaining a pre-diagnosis life is not possible. This is not 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 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 well. With any terminal disease or chronic illness, there are bad days, but they are never always like that. In this excerpt from my first book about dementia, What the hell happened to my brain? I wrote this:
“Subsequent to me being diagnosed with younger onset fronto-temporal dementia, probably semantic in 2008, at the age of 49, health care professionals and service providers all told me the same thing – give up work, give up study, go home and live the time I had left. It was 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 sooner rather than later, including selecting a respite day care and residential care facility, so I could become used to it. My husband was told he would soon have to give up work to become a fulltime 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, running a household, doing the shopping and gardening, living a very busy , full life with my husband to the next day being told to give up life as I knew it and to live for the time left. All of this advice was well-meant, but it is based on a lack of education and preconceived expectations and myths about how people can or as it seems, clear misperceptions that we can’t live well with dementia. This sets people with dementia up to live a life without hope or any sense of a future and destroys the notion of wellbeing. This Prescribed Disengagement™ sets up a chain reaction of hopelessness and terror which negatively impacts a person’s ability to be positive, resilient and proactive, ultimately affecting their wellbeing 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 believe there is NO hope.
Prescribed Disengagement™ lowers a person’s own expectations about how they can live well and it lowers others’ expectations about how we can function and live, including employers, doctors, healthcare professionals and service providers. For example, if I had 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 of dementia and the Prescribed Disengagement™’ and many of us think we can no longer live well. But it is possible! Although we work hard supporting ourselves with non-pharmacological interventions and remaining positive, being meaningfully engaged is not a cure, but it does improve our quality of life and wellbeing. There is a growing body of research to support this and as we are in reality, perhaps further away from a cure than we were 10 years ago, it is imperative we strive to live as well as we can 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 wellbeing and my ability to function in spite of the symptoms of dementia.
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