Paddy was suffering from advanced dementia. On his first day in his new nursing home, he found his way into the kitchen and picked up a knife. At that moment, the cook came in. She slammed the emergency buttons and he was immediately removed to a secure unit where he was heavily sedated. Within months he was dead.
Yet, Paddy's life with dementia could have turned out so differently if the staff had only known that he was not deluded and certainly not dangerous. His behaviour was, in fact, perfectly reasonable: he was simply using his long-term - rather than short-term - memory. In the cook's eyes, Paddy was a madman about to stab her to death. But as far as Paddy was concerned, he was just getting down to work. In his previous life, he was a master baker.
Anti-psychotic medication is the commonest treatment for dementias, such as Alzheimer's, but it is not only inappropriate, it can be fatal. Despite official guidelines, half of the 200,000 people with dementia who are living in care homes are currently taking anti-psychotic drugs. Many of those living with families are also on them. Yet rigorous recent research proves that one quarter of the elderly pill-takers will die prematurely as a result of the side effects (plosmedicine.org, April 2008 Vol 5, No 4). That is bad enough, but the psychological damage of these drugs is also huge: they dope, befuddle and reduce communication.
There is a desperate need for an alternative form of care. Believe it or not, my mother-in-law has discovered it. I must be the only man in Britain who would like my mother-in-law to look after me if I had dementia. She is called Penny Garner and her method enables family members or professional carers to deliver 24-hour wellbeing to people with dementias. Amazingly, we are still on good terms after spending a year producing a book that now makes her method available to everyone.
Commended in reports from both the Royal College of Nursing and the Alzheimer's Society, Garner's Specal (Specialised Early Care for Alzheimer's) technique is gradually gaining national and international attention. It shows that people with dementia suffer from only one major disability: they do not store new information properly so their short-term memory is defective. As Garner has been pointing out for nearly 20 years - and as brain scans now prove - much old information is still there. This intact long-term memory is the foundation of the only kind of care that offers lifelong wellbeing: Specal.
Garner's ideas evolved as a result of caring for her mother, Dorothy Johnson, when she developed Alzheimer's. One day, they were sitting together in a doctor's waiting room when out of the blue Dorothy said, "Has our flight been called yet?" Garner was mystified and played for time. Her mother anxiously looked around and said, "We don't want to miss it, where's our hand luggage?"
Suddenly, Garner realised what was happening. Her mother had always loved air travel and Dorothy was making sense of this crowded waiting situation by assuming they were in a departure lounge. When Garner responded with "All our luggage has been checked in, we've just got our handbags," her mother visibly relaxed.
From this and similar experiences, Garner realised that people with dementia frequently go back to old memories in order to make sense of otherwise incomprehensible situations. Because they do not store new information, they often have no idea who they are talking to or where they are - imagine how scary that must be and how aggressive you might become when your version of what is happening is challenged. Luckily, their long-term memory is working fine and completely logically. Faced with no clues about what is going on, they search their memory for comparable circumstances - if those around them will allow it.
Unfortunately, very few people, whether professionals or relatives, understand that this is what is happening. To them, it seems as if the person is completely bonkers. When the person starts calling out for their long-dead dog or talking as if they are at a workplace they have not visited for years, they are nearly always misunderstood as suffering from the kind of delusion for which anti-psychotic drugs are prescribed. The person is as convinced of the reality of their past situation as you are right now that you are reading an article. Yet everyone else keeps telling them otherwise, and like an actor in a play where all the other actors seem to be performing a different one, they either become terrified and panic-stricken or aggressive.
All too often, the anti-psychotics are just used as chemical coshes to close down the distress - not their proper purpose. But the impulse to prescribe them is wholly understandable. Carers' and professionals' lives are made unliveable by the person with dementia's chaotic fear and aggression, and as far as carers know, there is no alternative to the drugs. Unless, that is, they have been Specal-trained.
When Garner began working as the Alzheimer's Society representative at her local hospital in Burford, Oxfordshire, she encountered innumerable instances of well-meaning relatives and professionals misinterpreting the person with dementia as suffering from delusions, rather than using the past to make sense of their present. The reason the drugs do not work is because people with dementia are not deluded. They are not psychotic or schizophrenic, like claiming to be someone other than the person whose name is on their birth certificate.
Paddy was the perfect example of this. Prior to moving into the nursing home, he had been receiving Specal care from Garner, while being looked after by his wife at home. He had been a happy bunny because Garner had plugged into his old memories. She quickly discovered that he loved Irish jigs. They would spend all day talking about jigging, actually doing so and engaging in post-jig analysis.
So long as no one disturbed the sense Paddy was making of who he was and where he was, based on old memories, he had wellbeing. Garner's brilliant discovery was that a whole care plan could be built around the person with dementia's past experiences of professional or social roles, or of enjoyable hobbies, enabling them to live a kind of happy Groundhog Day.
Crucially, these past narratives also enabled carers to help the person with dementia to carry out the ordinary, vital functions of everyday life. It was not a case of consigning the person to a la-la land of the past. If the person was comfortable in the old narrative, they were much more likely to see the necessity for eating, sleeping, going to the loo and all the other vital functions that are so often problematic for carers to orchestrate.
A recent case exemplifying the super-iority of Specal care over drugs is Betty Cooper, 75, who has been suffering from vascular dementia for several years and lives in Wales. Her daughter, Deborah, lives in Oxford but was becoming increasingly concerned about her mother. "She was six and a half stone, frightened and angry when I called in the psychiatrists," Deborah recalls.
Given that there seemed no alternative, Deborah was grateful that the anti-psychotic drug they prescribed calmed her mother and that the care team intervened to get her eating again. However, there were adverse side effects from the pills. Betty became dopey, her mouth was always dry, which made swallowing hard, and she became very immobile and floppy.
By accident, Betty ceased taking the pills and there was an immediate improvement. "She was much more her old self," says Deborah. "My mother was back and the lights were on. We had the most meaningful conversation we'd had in years about her coming out of depression and how she wasn't going back there."
But what made all the difference was that Deborah had been Specal-trained. "We are getting on better than we have done for years. I can see she is not away with the fairies, just interpreting the present in the light of her past. It has been worth the investment of time to tap into some key wellbeing themes from her life history."
One such theme is her mother's love of popular music. "She waltzes up the corridor to Tom Jones, recalling the days when women threw their knickers at him. She lights up like the person she is inside: a glamorous divorcee with a gang of girls on a night out."
The best theme of all is "having a good laugh", says Deborah, "preferably until the tears run down her face. She always expects to wear a woolly hat when going out since she believes she is cold and that winter is coming (even though it is now summer). Indeed, this 'inappropriate dressing' was cited by professionals as evidence of her delusional state. We have turned the hat into a prop for a running joke about Benny, the 70s soap opera simpleton from Crossroads, who is my mother's latest clandestine lover. Due to the dementia, the joke is fresh every time and we now crack up merely by seeing the 'inappropriate' woolly hat. Above all, Specal means I am no longer scared of dementia."
Specal care is vastly preferable to drugs for people being cared for at home. It is also eminently transferable from family members to staff in institutions when the person with dementia needs to make the move. Specal has three basic commandments for better wellbeing: don't ask the person with dementia questions; never contradict them; and learn to love their repetitiveness. You will reap an immediate harvest by obeying these. If you have someone you are caring for, try not asking questions for 10 minutes - you will be amazed at the results.
A dramatic example of what could be achieved just by obeying the three commandments was what Tony Davis, 53, managed for his father Mike, 79. Diagnosed with Alzheimer's, Mike was becoming increasingly unhappy and violently angry towards his wife because she kept disputing what he said. Admitted to a secure unit in a mental hospital for older persons, he was administered Haloperidol, a powerful anti-psychotic.
Tony believes that most of the patients there were on this drug, or similar ones. "They seemed to have no alternative kind of remedy," he says. "The drug left my father barely able to walk. The hospital was full of shuffling ghosts. One of the purposes of medication seems to be just to keep these people from going anywhere."
After training from Garner, Tony decided to transfer his father to a nursing home. The move was so successful that since soon after Mike's arrival, two years ago, he has been "entirely content and off all medication".
This was partly achieved by persuading the staff to stick closely to a small number of simple care strategies relating to Mike. They were asked not to question or contradict him but, also to make sure certain familiar habits were followed at bedtime and on waking.
For example, to trigger the transition from wakefulness to sleep, there were three steps: the curtains had to be closed in a marked manner; a picture of Mike's wife with their long-dead dog had to be moved in order to draw the curtains, favourably commented on and placed in a prominent new position; and the bed had to be turned down in an inviting way, "indicating beddy-byes".
As in most nursing homes, the staff were in short supply and hard-pressed, but because the edicts worked, they were only too happy to adopt them.
Caroline Spruce, 45, a teaching assistant, is another offspring who has found Specal much better than drugs. Caroline was perplexed last Christmas when she visited her mother at her care home. Thelma Lee, 77, who has vascular dementia, had recently been put on anti-psychotics to make her less agitated, but was having severe side effects. Fortunately, the staff were willing to stop the drugs and accept Caroline's Specal-based alternative.
She asked them to record the anxious questions her mother most frequently asked. These were "Where's my daughter?", "Can I go home?" and "Where's my son?" Caroline prepared a list of answers to be used by the staff every time they were asked.
Her daughter "has gone to pick up the kids from school" and "yes, you can go home, we'll phone your daughter to sort it out". The whereabouts of her son was presented as "he's gone to work". This latter is interesting, since he has recently died of cancer.
Over the years, Penny Garner has been accused of encouraging carers to engage in unethical lies. However, Specal is encouraging no such thing. Once you understand that the person with dementia's main disability is that they do not store new information properly and that they frequently inhabit past times as their way of making sense of the present, it is manifestly ethical to support their wellbeing by not challenging their account of reality - in fact, most ethical of all is to support it.
In Thelma's case, it would be hugely destructive to her to demand that she confront the death of her son, especially since she would have no memory of you having her told her about it but could be left with a huge sense of distress that something awful has happened. Likewise, if she believes herself to be only staying at a hotel for a few days, rather than living in a nursing home, what is ethical about imposing your reality on her?
This is no clever-dick philosophising. As Caroline puts it, "Specal has been utterly empowering for me personally. But above all, it has enabled my mother to be reasonably contented."
There are hundreds of other carers out there who feel the same, but for most people with dementia, unaided by Specal, it is a horror story. I can only hope that, if I ever get dementia and my mother-in-law is no longer around, I am cared for by someone who was trained in her method - that Specal care has become the national norm.
· Oliver James's account of Penny Garner's work is called Contented Dementia: 24-hour Wraparound Care for Lifelong Wellbeing, and is published by Vermilion. Information about Specal is available at specal.co.uk and selfishcapitalist.com
