Why faster service is better news for dementia sufferers

JANE Driver noticed that her widowed mother Sylvia, then 74, was no longer able to organise her finances around eight years ago when she wrote a cheque to the council and had no idea what it was for. Jane was granted power of attorney to deal with her mother’s affairs.

In subsequent years Sylvia’s memory got worse. Jane, who lived a few minutes away from her mum in Sheffield, visited several times a week and realised that Sylvia often forgot people’s names, where she’d put things and even important appointments.

What made Jane decide it was time to persuade her mother to see the GP was the fact that, despite regular medication for rheumatoid arthritis and asthma being delivered in a special blister pack labelled with the days of the week, Sylvia was getting her tablets mixed up. The GP carried out a standard test – asking Sylvia to look at five objects, then putting them away and talking about other things, before then asking Sylvia to remember the items. He also asked routine questions such as what the date was, and who the prime minister was. Sylvia scored poorly.

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The GP referred Sylvia to the memory clinic for further tests and a formal diagnosis. Sylvia would need that confirmation of her condition before accessing dementia drugs and other services. However, she did not get her diagnosis until a year later, in March last year.

“In those 12 months, she went downhill rapidly without medication to help her,” says Jane, a training manager who took a couple of years off work to care for her mum. “She was unable to cook any more; she couldn’t remember how. So I took meals round for her to warm up in the microwave. She couldn’t go shopping, could do no housework other than dusting, couldn’t bathe herself or manage the washing machine. She couldn’t go to the hairdresser, as she couldn’t sit still for long. She wouldn’t initiate conversation but could respond.”

Jane was the only family member living near Sylvia, so the pressure was on her to do everything – although she also needed to go back to her career.

“By the time the diagnosis happened at the memory clinic I was desperate. I thought help would kick in immediately. Mum started one drug and changed to another that suited her better after three months.”

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Jane faced a struggle to get social services to provide some care help for her mum, but her mum was able to spend a further period living in her own home.

“Of course, once I involved my MP, people were banging on the door to offer help. After mum went to hospital with a virus, she got six weeks’ free care automatically provided four times a day, then we were forced to take on private carers. But you resent paying for inferior care...and some of them were a nightmare.”

Towards the end of last year, a bad attack of arthritis took Sylvia into hospital again, and staff there felt it was time for her to go into 24-hour care. But the difficult decision was left to Jane.

“It was an incredibly hard decision,” she says. “But I was stressed all the time and lost a considerable amount of weight worrying about mum and doing so much with no-one else around to share the burden. Mum is now in a nursing home and despite her dementia deteriorating rapidly now she is well cared for and very upbeat.”

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The All-Party parliamentary group on dementia has reported “shocking variations” of waiting times across the country for access to memory services.

The report said the average wait for diagnosis was three months but delays of more than a year were known. The authors call for major improvements to local services. Dr Kirsty Harkness, a consultant neurologist with a special interest in dementia at Sheffield Teaching Hospitals Trust, says services in the city have improved in the last couple of years.

“There’s more to be done, but our service has expanded.We recognise that there are still problems, but there’s a huge amount of work going on to address them, including increasing awareness and diagnosis, a new dementia research group, new clinical network and a new lead in dementia care, who is a geriatrician.”

“There has to be a massive overhall of services for dementia,” says Jane Driver.

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“I feel mum could have stayed longer at home had she been formally diagnosed and treated sooner. There needs to be tighter control of private care agencies, too, as well as a serious examination of how care is to be paid for. People like mum who have worked all their lives shouldn’t be stripped of their assets.”

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