Inspired by her personal experiences with dementia, Barbara Stephens has committed to supporting people living with dementias and their families throughout her life and career. She is Chief Executive of Dementia Pathfinders, a social enterprise committed to delivering education, learning, support and care for people living with, and supporting, dementia. Barbara is also a Caregiver-in-Chief at Unforgettable.
Please tell us about some of the work you have done to support, improve and contribute to the lives of, people with dementias?
After working for the Alzheimer’s Society for several years, I was appointed Chief Executive of the Dementia Relief Trust (now Dementia UK), in 1999. In my 14 years in the role, the number of Admiral Nurses increased from 10 to well over 100, there was significant investment in dementia training and a thriving network for carers was created.
Inspired by my personal experiences with dementia and other life-limiting conditions, I founded Dementia Pathfinders in 2013. We have several exciting partnerships across the country including with a community interest company called Agewell and acting as a delivery partner for ‘Dance for Life’, a collaboration with Matthew Bourne’s New Adventures dance company.
In January, I was offered the opportunity to work with Unforgettable as the ‘Caregiver-in Chief! I’m delighted to be contributing to the fulfilment of Founder James Ashwell’s ambition, to make useful products available to people living with dementia and their carers.
What was your motivation for getting involved in the field of dementia?
My original motivation was my experience with my father-in-law who, at the age of 92, was diagnosed with what was called in those days ‘senile dementia’.
This was in the 1980s, when the approach to caring for people living with this condition was far different from now. The stigma was acutely felt, services were scant and there was little support available for families.
What would you say has been your greatest achievement or highlight?
Setting up the Admiral Nurses helpline at Dementia UK. The service was started in 2007 with minimal resource, against a backdrop of uncertainty about managing the ebb and flow of demand. A talented Admiral Nurse, Jules Jones, was seconded to the charity for one day a week to manage the service and a handful of Admiral Nurses worked sessionally in the evenings to answer calls and emails.
I’m committed to further developing Dementia Pathfinders. We’re planning to expand ‘Dementia Conversations’, a church collaboration in the Isle of Wight and Altrincham, and I’ll soon be working with the British Gymnastics Foundation on their ‘Love to Move’ programme.
I’m also very excited about taking ‘Unforgettable’ forward!
If you could change one thing now to improve the lives of people living with dementia, what would it be?
I would like to change the negative perception of care homes as being the ‘last resort’ for people living with dementia. I would also like to see a greater variety of ‘lifestyle’ choices for people in later life.