Barbara Pointon: make better care husband’s legacy

Alzheimer’s campaigner Barbara Pointon has appealed for her husband’s legacy to be better care for people with dementia – not the controversy surrounding a documentary yesterday depicting his final days.

ITV’s Malcolm and Barbara: Love’s Farewell created a media storm after the channel initially said it depicted the moment of Malcolm Pointon’s death from Alzheimer’s. It emerged this was untrue and ITV was then accused of trying to fake a death scene on television.

Barbara Pointon, who cared for her husband through a 15-year battle with the disease, said they had agreed for filmmaker Paul Watson to film their struggle in 1995 to “peel away the stigma attached to dementia”. Last night’s programme was the second of Watson’s documentaries on the couple, following the 1999 programme, Malcolm and Barbara, A Love Story, which Pointon said “began to bring this illness out of the shadows of ignorance and fear”.

Barbara Pointon subsequently became a campaigner for people with dementia and their carers, receiving an MBE  for her work in last year’s Queen’s birthday honours.

She added: “We cannot afford to keep dementia in the shadows. I don’t want the public’s memory of Malcolm to be a few weeks of media headlines, I want it to be a lasting legacy for everyone affected by dementia.”

Echoing a key aim of the government’s planned national dementia strategy, announced on Monday, Pointon called for speedier diagnosis, saying her husband had been treated for depression for two years before being diagnosed with dementia.

Barbara Pointon also called for compulsory training for all staff who come into contact with people with dementia, much better joint working between health and social care, improved access to palliative care and for more people with dementia to receive NHS continuing care.

She also demanded more funding for research, better support for carers and improved access to dementia drugs. The latter call comes ahead of tomorrow’s expected High Court judgement on the judicial review against the National Institute for Health and Clinical Excellence’s decision to limit NHS access to certain dementia drugs.

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Related information

Mad World Blog: Dementia’s moment in the sun

Call for a new strategy to deal with UK’s dementia timebomb

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