Living Beyond Dementia

As part of Brain Health Awareness Month, I wanted to focus most of the blogs here to share strategies, even some recipes and books or articles that support living beyond dementia. In fact, I have a website called Living Beyond Dementia™, although it is now set to private as I am not able to manage adding to it anymore. So, to bring some light back to risk reduction of dementia, and especially brain heallh, today’s post is one I have added before, and highlights some of the issues people with dementia face.

I wrote it a number of years ago for the Australian Journal of Dementia Care, and it is about ditching the Prescribed Disengagement® given to most people when diagnosed with dementia, and is about Living Beyond Dementia™ instead.

Reinvesting in life is the best prescription

First posted on December 1, 2014 by AJDC Team

When Kate Swaffer was diagnosed with younger onset dementia, she was advised to give up work, study and life as she knew it, put her affairs in order and investigate aged care options. Instead, she ignored this ‘Prescribed Disengagement™’, as she terms it, and reinvested in life – something she recommends to everyone who has been diagnosed with dementia.

Subsequent to my being diagnosed with frontotemporal younger onset dementia in 2008, 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 – and 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 carer.

Read the full article online here…

3 thoughts on “Living Beyond Dementia

  1. Thank you Kate for reposting this very impactful article as it reminds us to continue to advocate strongly on behalf of those living with dementia, who may be either knowingly or unknowingly, being accorded in this way.

    I am a fierce and passionate advocate for people not only living well after their diagnosis but embracing it, seeing it as part of their life journey, losing the guilt, shame and stigmatisation that so often comes from others (often Geriatricians and GPs defining them through their diagnosis) and speaking up.

    You are an inspiration to so many people!

    Regards, Jen


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