Living Beyond the Diagnosis of Younger Onset Dementia

By Kate Swaffer ©, 2012

Just before my 50^th birthday, I was diagnosed with a younger onset fronto temporal dementia. With no pharmacological treatment options, and the realisation it is a terminal illness, I decided to accept it as a disease with disabilities, rather than one leading to my demise.  My neurologists and neuropsychologists told me to “give up work, give up study, and go home and live for the time I had left!” I termed this ‘prescribed disengagement’ and chose to ignore it! I gave up work 12 months later as my driving license was revoked, but rather than give up everything, I developed strategies to accommodate the disabilities caused by the symptoms of dementia, as they appeared. I remained at university with the support of disability advisors and campus counsellors to continue with two tertiary degrees, both completed post dementia diagnosis. My roles now are as an advocate for improving dementia and aged care, and a writer, poet and speaker.

I remain actively engaged in a world beyond dementia, and use writing and blogging not only as a form of emotional healing, but to create my memory bank. My blog has become the journal of my life, my thoughts and my activities, ensuring my memories are retained, not only for my children later on, but for me right now. Other social media like Facebook and twitter have also become important, as they offer other social connections and photographs, other ways to record and recollect my world. Having dementia does not mean you have to give up doing crazy and fun things or blogging and living beyond the diagnosis. For some, following a diagnosis of dementia, their whole life becomes about dementia and many forget to keep living the other parts of their lives. It is probably the negative side effect of the ‘prescribed disengagement’ given out following diagnosis.

Blogging and writing has become imperative to my positive attitude, and my global community motivates me to keep fighting against dementia. I published a poetry book earlier this year, Love, Life, Loss, A Roller Coaster of Poetry, available via my blog Creating Life with Words. Recently I have been involved in setting up two new blogs; one called The Dementia Dialogue, where a woman diagnosed with dementia and a carer discuss the disease, its impact on their lives. Through this conversation, we hope to open up the doors to a deeper understanding. The other one is called Global Dementia Voices, where people with dementia share their stories. I write to stay inspired, to share my thoughts, to remind me of who I really am. Treating the symptoms of dementia as disabilities, rather than managing them in ways that constrain and hinder me are vital to my well-being, motivation, and my ability to continue living well.