Barbara Pointon obituary

NHS continuing healthcare, or CHC, is a funding programme for frail and ill people that can be worth thousands of pounds. Only those in care homes with trained nursing staff were eligible to receive it until 2004, when Barbara Pointon, who has died aged 80, won a landmark case. It established that CHC could be provided to people in any setting, including in their own homes, opening the door to thousands who might now qualify for funding.

In 1991 Pointon’s husband, Malcolm, was diagnosed with Alzheimer’s disease at the age of 52. She retired as a music lecturer and threw herself into caring for him with characteristic verve and empathy, and when the Alzheimer’s Society approached the couple in 1995 about a documentary, they agreed to take part. Pointon said they wanted to “blow the doors and windows open” on what was still a misunderstood disease.

The result was Paul Watson’s stark yet very moving documentaries for ITV: Malcolm and Barbara: A Love Story (1999), and Malcolm and Barbara: Love’s Farewell (2007). Watson aimed to show the “full arc” of dementia and the second film was screened amid controversy that it showed Malcolm’s death. (It did not – he died several days later.)

After seven years at home, Malcolm’s behaviour became challenging and in 1998 Pointon reluctantly moved him into a care home. But, shocked at his deterioration, in 2000 she brought him home again. She could cope if she had some time off every five weeks while Malcolm was looked after in a local psychiatric unit, but that became problematic in 2001, when driving to the unit gave him panic attacks.

As the Cambridgeshire health authority was funding his stays in the unit, Pointon asked if they could instead pay for staff to care for him at home while she took a break. They agreed, but would pay for only three and half hours a day, and deemed it to be “social care” that did not require a qualified nurse. But Malcolm needed dedicated expert care 24/7. He was immobile and incontinent, experiencing epileptic seizures and choking fits, and was described by one assessing doctor as “barely able to blink unaided”.

Pointon took advice from the Alzheimer’s Society, appealed, and eventually the health service ombudsman upheld her complaint, ruling that the assessment tools had not sufficiently taken account of Malcolm’s needs. She also ruled that the care Malcolm received from his wife was equal to what he would have received on a hospital ward, and being cared for at home by family carers should no longer be a barrier to getting CHC. The Pointons, as a result, received CHC funding worth £1,000 a week.

In 2007, Malcolm died. Pointon had been made MBE in 2006 for services to dementia and she continued to pour her energies into campaigning. She was an eloquent and captivating speaker, comparing the brain to an inverted pyramid with acquired skills at the top and a person’s very identity, or spirit, at the bottom. Seeing Malcolm deteriorate, she said, was “like watching a film of his life running backwards”, but his essential essence remained and his disease “gave me the privilege to glimpse his very self”. She was able to draw on her own experience, saying how carers should “go with the flow” and imaginatively enter into the world of someone living with dementia.

Pointon worked as an ambassador for Dementia UK for 21 years, promoting the work of Admiral nurses, who support family carers. Janet Jason, the founder trustee of Dementia UK, said: “Barbara was a tiny lady with a big voice and she told it like it is. Without Barbara, there would be far fewer Admiral nurses in this country.”

Pointon was also a prominent ambassador for the Alzheimer’s Society. She served as a member of the government’s standing commission on carers and two ministerial advisory boards on dementia; she contributed to a Department of Health training guide, the government’s 2009 national dementia strategy, and to publications such as Dementia from Advanced Disease to Bereavement (2011). Throughout, she passionately advocated free dementia care, support for families and an end to red tape. “There are people starting out on the road we have almost finished,” she said. “Let’s try and make it better for you and thousands like you.”

Born in Longton, in Stoke-on-Trent, Barbara was the only child of Leslie Moore, an organ-maker and piano-tuner, and Dolly (Doris, nee Chadwick), a painter in the Stoke potteries. She went to Thistley Hough grammar school, where she became involved with music, theatre and opera, then in 1957 won a music scholarship to Birmingham University, meeting Malcolm, a fellow music student. They married in 1964.

After graduating in 1960, Barbara became a music teacher at Shire Oak grammar school, in Walsall Wood in the West Midlands, then a lecturer at Homerton College, Cambridge, which was then a teacher-training college. In the 1960s and 70s music education was going through an exciting phase as it changed from teaching the lives and works of great composers to encouraging children to handle instruments and compose.

She became head of department and was joined by Malcolm and another inspired musician, David Hindley. Together they introduced generations of students to electronic music, new techniques and innovative ways to teach. A former student said: “Barbara shared all the enthusiasm, but mixed it with commonsense and pragmatism. She was an incisive thinker.”

In 1967 Malcolm and Barbara moved to Thriplow in Cambridgeshire, where they stayed for the rest of their lives and had two sons, Chris and Martin. Barbara became active in village life, leading the amateur dramatics society and children’s music club.

In 2018 she began to develop dementia, and she spent some time in Denbigh ward, in Fulbourn hospital, a purpose-built unit for people with dementia, which she had helped design in the 90s. She had created it with a garden and a circular layout so residents could walk and walk, and she could now take advantage of that herself.

She is survived by Chris and Martin, and three grandchildren.

• Barbara Pointon, music lecturer and dementia campaigner, born 13 August 1939; died 21 June 2020