Rachael Litherland is Co-Director with Innovations in Dementia CIC, a national community interest company, set up in 2007. Prior to that she set up and managed the Living with Dementia programme for Alzheimer’s Society and worked in advocacy for people with dementia in care homes. Dementia has always fascinated Rachael since her grandma was diagnosed when she was a teenager in 1988 and this experience has resonated throughout her work.
Please tell us about some of the work you have done to support, improve and contribute to the lives of, people with dementias?
At Innovations in Dementia we work with people with dementia, partner organisations and others to help people with dementia keep control of their lives and be happy. We achieve this through running innovative projects, offering a training and consultancy service, and by influencing dementia practice and policy. We work with, and alongside, people with dementia to shape practice, policy and attitudes.
What was your motivation for getting involved in the field of dementia?
Dementia fascinates me - it has been my preoccupation since my grandma was diagnosed when I was a teenager in 1988. A former Lancashire mill worker, she told me off for ‘meemawing’ behind her back. Her words: “Don’t ever forget: I’m still in here” brought me up short at the time, and have echoed around my work ever since.
What would you say has been your greatest achievement or highlight?
We support DEEP - the national network of dementia voices. It is wonderful to have this day-to-day contact with people with dementia through DEEP - a diverse, rich, and warm network of people who give so much of themselves to the cause. I’m proud that I’m part of a small organisation working to amplify the voices, feelings and wishes of people with dementia and record their legacy. We may be small but our collective reach is mighty- built on a firm base of justice, warmth, openness and bravery.
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 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?
For the media to drop the word ‘dementia sufferer'. When people come home reeling from their diagnosis the media is often the place through which they begin to understand what is happening to them. Global terms such as 'dementia sufferer' diminish people - people I have come across living with dementia describe them as "curl up and die words".