Our attitude and approach to helping people with dementia can be as important as medicine and scientific research, says Katherine Blaker.
At the G8 summit today there will be lots of discussion about the need to increase funding for dementia research so we can identify preventative and protective ways to reduce dementia and find a cure.
This is valuable work but it is not the only work. The Prime Minister’s dementia challenge has brought increased attention to a groundswell of voices for change in the way we think about, talk about, involve and enable people living with dementia.
Evidence from our research tells us that people living with dementia are directly affected by prevailing negative attitudes to dementia. The widespread use of military metaphors – time bombs, battles, fights, victims – all increase fear of the disease and those living with it. This fear contributes to the isolation and exclusion that people with dementia report as a common experience in their lives post-diagnosis.
Making the UK a great place for those of us with dementia to live full and active lives requires all of us to do something differently. Here at JRF and JRHT, conversations about our journey to becoming a dementia-friendly organisation have spawned a number of practical initiatives: a dementia-friendly sensory garden in Homestead Park and a dementia-focussed audit of the Folk Hall – the community centre at the heart of Joseph Rowntree’s garden village, New Earswick.
JRF wants to involve people with dementia at every stage of this. But it is challenging. It takes time, planning, forethought and commitment. I have no background in dementia care, only the brief experience of trying to support and offer care to my dad who lived for a short period with early onset dementia. In my first six months in this job, my greatest learning has been directly from the fabulous, amazing and inspiring people I have met who are not just living with dementia, but carving out a whole new way of being.
The developing collective voice for these activists living with dementia and – as campaigner Peter Ashley so eloquently put it – for those who do not have the privileges shared by some to find and give voice to their experiences and ambitions, is the richest source of inspiration and change.
We are on the cusp of a fundamental change in the way in which we view and respond to people living with dementia. So let’s not focus all attention on research into the causes of dementia and alleviation of the symptoms with pharmaceutical solutions – those solutions are still a way off and we must not forget the needs of the many people living with dementia now.
Let’s use this summit to shout from the rooftops that life with dementia can be a good life, but only if we all play our part in challenging stigma, misunderstanding and fear.