Understanding the experiences of people living with dementia has the power to bring about the greatest change. I hope by speaking out I can break down some of the stigma, writes Kate Swaffer.
My early childhood was spent living on a farm on Eyre Peninsula. From then until adulthood, life never stopped being busy. By my mid 40s I was juggling the roles of wife, mother, career woman, and mature-age student. I had worked as an aged and dementia care nurse, an operating theatre nurse, and a chef. I was embracing life and all it had to offer.
It was at age 49 that I was diagnosed with a rare form of fronto-temporal dementia. To say this was a shock is the understatement of the century! I cried almost nonstop for more than six weeks, until I started to write and talk about it. I ‘came out’ about the diagnosis to family and friends, and it was like what I imagine coming out about being gay was like 30 years ago. Many people quietly disappeared from my life, with some saying they’d rather not engage in my ‘dementia journey’ as it would be too sad for them.
I know many others who have had this experience, although there has been a sea change in attitudes to dementia since the turn of the century. Global awareness campaigns about becoming dementia friendly have started to make an impact on the level of understanding of dementia in our communities. We now understand that dementia is a chronic disease like any other and not simply the outcome of ageing.
But these new insights have yet to reduce the stigma and social isolation that a diagnosis of dementia often brings. As a person who has lived with younger onset dementia for six years in Adelaide, and still living in the community in my own home, I can undoubtedly say that I do not consider my community to be dementia friendly. The consequences of living in a community that is not dementia friendly is the exclusion, the stigma and discrimination that exacerbates the shame, and not being respected enough to speak for myself.
The day that I was diagnosed, I was advised to go home, give up work, give up study, and live for the time I had left. This Prescribed Disengagement was at odds with my view of living well, so I instead chose to reclaim my pre-diagnosis way of life and literally fight for my life.
I pursued—and still carry out to this day—non-pharmacological and positive psychosocial interventions daily, some more than once a day, as if it was the Olympics training of my life. These included studying, phenomenology, autoethnography, neuroplasticity brain and body training, exercising six days a week, brain injury rehabilitation, poetry—especially haikus—blogging, healthy nutrition, supplements, music therapy, hydrotherapy and mind mapping. Other positive interventions I use also include advocacy, volunteering, laughter, spiritual health, love, reading, family time, friendships, and other creative writing.
They may not be a cure, but they have improved the quality of my life, my overall sense of wellbeing, and I believe, slowed the progression of this insidious disease.
A significant part of developing dementia-friendly communities is to understand and help people with dementia to achieve well-being and quality of life, and maintain this for as long as possible. Continued engagement that is truly positive and meaningful to the individual person, without stigma or discrimination, and with full inclusion, is what dementia friendly means. It is positive and empowering, and allows people with dementia to continue to live their pre-diagnosis lives. It reduces the isolation, stigma, discrimination, depression and loneliness. It helps retain a sense of identity for people with dementia, whether through supporting them to remain employed, or providing opportunities for them to volunteer. It helps people with dementia to re-claim their lives from dementia.
Listening to and understanding the personal stories and experiences of people living with dementia has the power to bring about the greatest change. I hope by speaking out I can break down some of the myths, stereotypes and stigma about a diagnosis of dementia.
No longer are people with dementia living, nor willing to live, empty lives. As a person living with dementia, with the emphasis on ‘living’, my future is now defined by the possibilities of the dementia. Alzheimer’s Disease International have a global charter: I can live well with dementia. They are serious about it, and so am I.
Kate Swaffer is a consultant on dementia-friendly communities with Alzheimer’s Australia.
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