Please tell us about some of the work you have done to support, improve and contribute to the lives of, people with dementias?
I have thought, spoken and written about the way in which our culture perpetrates stereotypes about dementia and tried to challenge the dominant representations and deep-rooted prejudices that guide the stories told about dementias. I work closely with people with dementias to find ways to ensure that their voices are heard.
Working in a dementia care home in North Norfolk I developed a way of educating care home staff about dementia while also challenging some of the stigma they experience. I am currently preoccupied with the way in which co-creative arts can extend the agency of people with dementias.
What was your motivation for getting involved in the field of dementia?
When I was young I was drawn to older people, maybe because there weren’t many in my own life and also because I love stories. Older people, especially those with dementias, share their stories openly and generously. In my 20s I worked at a day centre for people with dementias (then called ‘the elderly mentally infirm’). People with dementias were discussed as if they were not there. I recognised that what was proposed as ‘therapy’ was the reverse.
My own experiences of mental ill-health (I live with bipolar disorder) have also been significant in guiding my work with people with dementias.
What would you say has been your greatest achievement or highlight?
I never think of my work in those terms! Nothing would have been possible without the scholarship and pioneering work of others. The highlights are engaging with people with dementias. Recently a gentleman, who had very little language left, placed his hands on my shoulders with great deliberation and whispered ‘Thank you’.
What’s next for you?
I hope to write about co-creativity with people with dementias. I am interested in the diversity of experiences of people with dementias: those in isolated, rural settings, in Black and Minority Ethnic (BAME) communities, older people and people close to the end of their lives, who can’t give ‘consent’.
If you could change one thing now to improve the lives of people living with dementia, what would it be?
It is hard to identify ONE thing: there is so much to change and left to do.
It would be marvellous if dementia care home staff and carers had high-quality, bespoke education and were paid as well as bankers! I would like to see the arts, including co-creative arts, routinely available for people with dementias.
And another thing...
I am humbled and transformed by my work. The reminder of the proximity of my own mortality means I live, laugh and love much more fully.