Staff at Dementia UK are sad to learn of death of Barbara Pointon

Barbara cared for her husband through his dementia, and created a film to show the realities of what that entailed. ‘Malcom and Barbara – A Love Story’ was first shown in 1999, and for many people, was the first insight they had to the brutal realities – and touching moments – of caring for someone with dementia.

Rachel Thompson, Consultant Admiral Nurse, Lewy body dementia, said: “We are so sad to hear of the passing of the much loved Barbara Pointon this week. Barbara’s experiences of dementia after her husband was diagnosed with the condition led to her shining a light on the needs of family carers. Her tireless campaigning culminated in a landmark case to access CHC (Continuing Healthcare) funding, which was often denied to people with dementia.

She was also an advocate of the vital work of Dementia UK’s Admiral Nurses, with past and present Dementia UK staff drawn to her incredible character as well as her honest and moving accounts of her caring experiences. It’s these experiences which have shaped the direction of dementia care and support to family carers, particularly support at the end of life.

She was never afraid of speaking out, and she always spoke from the heart and with a passion that was impossible to ignore. She managed to get the ear of many senior people in the field of dementia and carers, and I know influenced thinking and policy. Her tenacity in the pursuing the case for accessing NHS Continuing Healthcare Funding was remarkable and many others have benefited as a result. This was no small feat!

It was a true honour and privilege getting to  knowing Barbara, and she had a huge impact on me and the world of dementia care.”

Barbara’s family have launched a website for those that knew her to share memories.