How not to solve the dementia crisis – £55 lollipops for GPs

http://www.theguardian.com/commentisfree/2014/oct/28/solve-dementia-crisis-paying-gps

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Spell “world” backwards. Draw a clock face. Remember three words. You can’t? Then you may have just earned your GP £55. Last week it was revealed that doctors are being offered this sum for every early diagnosis of dementia, even though our current diagnostic tools can be as rudimentary as I’ve just described – known as the mini-mental state examination. And even then, if the diagnosis is made, people with dementia are still being tipped into a “care” system that is bewildering, patchy and sometimes nonexistent.

My dad was first seen by a GP after my mother realised, finally, that something was grievously wrong: he had tried to put a saucer on a cup, and the kettle in the dishwasher, and she couldn’t explain this away as normal ageing any more. He was only in his mid-60s. The GP referred my parents to a “memory clinic”, where they went later for a diagnosis. My mother remembers being ushered into the room of a young doctor who, without turning her head from her computer, said “well, this looks as though it’s Alzheimer’s”. My mother asked how she could tell. “Well,” she continued, “the brain seems to have shrunk, but we never know for sure until we do an autopsy.”

This was my parents’ first exposure to the shabby, confusing and often callous system that still passes for dementia “care”. Over the next couple of years, my dad’s brain was damaged along with his personality, so that a man mostly remembered as elegant, courteous and gentle with a lovely dry Yorkshire humour, became someone who howled at the woman he had been married to for 30 years; who locked her out of the house at 3am when she was in her nightdress; who chased her when she managed to drive off in the car, pelting the bonnet with his fists, spitting with hatred. I’m sure there was worse, but she didn’t tell us. There were drugs. Aricept, as rote. But also powerful, scary anti-psychotics; other drugs that gave him a near stroke, then angina, and that caused him to fall and need 14 stitches. Meanwhile my mother filled in forms several pages long and of a complexity that baffled our competent, well-educated family. After dozens of phone calls, she discovered she was allowed an elderly care social worker, who was great but overworked. They had intermittent visits from a mental health nurse, who could only stay for about half an hour, given his caseload. They saw another neurologist who told them, “well, it’s good news, it’s not a brain tumour”.

At some point the GP wrote to my dad. The letter asked him to ring or make an appointment to discuss his “Alzheimer’s problems”. By then he could no longer read. He couldn’t write, and only spoke simple words that he was sure of. When my mother phoned to make an appointment, she was told the GP couldn’t discuss my dad because of patient confidentiality. It got worse. After all the phone calls, the carers who came and went, the desperate attempts to find proper help, my mother says, “I gave up asking. I thought I could cope.” This is how dementia is mostly cared for these days. Dementia costs us £26.2bn a year, according to figures from the Alzheimer’s Society, but £11.6bn of that is in unpaid care from people like my family.

My mother did her best. But she was getting two hours’ sleep a night, if that, because my dad would wake and howl and wander. She never told us at the time, but there was a night where she was seriously considering getting in the car with my dad and driving off a bridge. She was saved by calling the Admiral Nurse helpline run by Dementia UK. Admiral Nurses are most easily described as Macmillan nurses but for dementia. They are specialist, highly trained, and anchors and torchlights through the chaos of “care”. If we had had one, our lives and my dad’s death would have been different. There are only 130 in the UK, and there were none where we lived.

When I noticed my mother had hidden the knife rack, and after my dad threw a chair at an agency carer, we had to call the police and have him sectioned. I prefer not to remember the horror of that day, how we surrounded him like a cornered creature, or how we blackmailed him into the ambulance. He was sent to a bleak, mucky-carpeted, “assessment centre”, where he was locked in. There was no other option: there were no care homes that took aggressive dementia patients.

He spent six months in assessment centres, where he lost several stone, though my mother visited every day. Finally he got septicaemia from one of the unexplained cuts. He was admitted to our local hospital in Wakefield, and after a week, I read the medical notes and saw he had been put on a “dying adult care pathway”. Dying adult what? We didn’t know he was dying. So this was why, every time my mother arrived, she found his drip disconnected.

Why didn’t we protest? Because we were exhausted and bewildered. Whatever your background or skills, you become impotent in this medical environment, unsure of what is right. I know this still happens. I know that it is still common for the period known as “post-diagnostic support” – essentially the rest of your life after diagnosis – to be as bewildering and dreadful as ours was. Paying doctors £55 for diagnosing dementia may work in increasing diagnosis, but then what? Already conscientious GPs hold back from early diagnosis because they know there’s no support afterwards.

A 26-week wait to get to a memory clinic is already far too common. Hilda Hayo, the chief executive of Dementia UK and an Admiral Nurse, says she wouldn’t be surprised if the referrals to memory clinics doubled. So they will be even more stretched. About 850,000 people in the UK have dementia, although since 40% of dementia is undiagnosed, the real figure will probably be higher. By 2051 there could be more than 2 million. Figures published in 2010 showed that £590m was spent a year on cancer research, and £50m on dementia, though dementia costs us more than cancer and heart disease combined. It was easy for David Cameron to promise to double the dementia budget, because it was so tiny.

How has it become so skewed? Dementia terrifies. It still terrifies me, though I know it intimately. A report released by the Medical Research Council this week found that a quarter of people with dementia hide their symptoms through shame and fear of stigma. They fear diagnosis; they fear losing their friends. We saw friends disappear, either because they were so scared of dementia or because they didn’t know how to talk about it. Unlike cancer, there is no young survivor population who can fight loudly. Dementia carers are often elderly and not about to run a charity marathon or fight stigmas when they are exhausted and emotionally eviscerated by the end.

I live in Leeds, a city with a great dementia-friendly strategy which is trying to improve matters in the teeth of huge financial cuts. There are other good initiatives, here and there. My mother has just been promised that there will be an Admiral Nurse in Wakefield, which is what she has been campaigning for since my dad died. This makes sense both morally and economically: a study by Norfolk NHS Trust found that an Admiral Nurse saved the health service £443,593 in a year, in reduced contact with GPs and nurses, and in the eight mental health bed referrals that were avoided.

That’s the kind of calculation that we should be making, not simply putting a bounty on diagnosis. More money would bring better training of staff such as that thoughtless junior doctor, the thoughtless GP, the thoughtless auxiliary who called a dementia patient “a nasty man”, when it’s the disease that is nasty, not the person. Such endemic thoughtlessness shows that it’s the system that’s broken. It’ll take more than £55 lollipops to fix it.