Dementia campaigner describes challenges carers face

Former carer and dementia campaigner Barbara Pointon, who featured alongside her husband in the documentary Malcolm and Barbara: Love’s Farewell, has called for better diagnoses of dementia.

Barbara, who cared for her late husband Malcolm for almost 16 years, told the Community Care Live conference in London that they had waited two years before Malcolm was diagnosed with Alzheimer’s disease.

She later told BASW Online that Malcolm had previously been diagnosed with endogenous depression, although he was also disorientated at the time. They later diagnosed him with Alzheimer’s after he got lost on a seven mile journey he regularly travelled from work to home.

“In those two years, we missed out on having a whale of a time,” Barbara told the conference, adding that it was a “scandal” that two thirds of people showing signs of dementia remain undiagnosed.

She added that 71% of GPs feel unconfident about dementia and welcomed the fact that GP’s are receiving more training in the area, as well as the increase in memory clinics.

She also welcomed the introduction of dementia advisors, although she cautioned that the version of this role she had envisaged has been watered down. “We need the dementia advisor role to have a backpack of knowledge, and know what’s available – someone who can ‘walk the walk’ with you and help you cope day-to-day,” she said, adding: “A phone can’t give you a hug when things get really tough.”

After the diagnosis, Barbara said she had no idea what services were available. A social worker came and left after learning that the couple were self-funders, a group that Barbara believes “get the thin end of the wedge”.

“We were then overwhelmed with a plethora of paper-work,” she added.

At that time, there were very few services for younger people with Alzheimer’s – Malcolm was 51 when he was diagnosed – and at times, Barbara had to put Malcolm to bed 15 times during the night. “I was given more day support but had I been asked, I would rather have had night care to help me to get some uninterrupted sleep,” she said, adding that carers need every bit of strength for the work they do.

 A string of 14 different live-in carers in eight months caused Malcolm to become aggressive, which left Barbara totally exhausted to the point where she had to put him into a nursing home – a move she still feels guilty about.

“In dementia, continuity of care is essential,” she said, explaining that the lack of continuity and her decision to put Malcolm into a care home would have cost social services more money.