A radical approach to dementia care has been invented by a grandmother who has no medical training. Now the professionals are taking notice.
By all accounts, Dorothy Johnson was quite a woman. An international bridge player and an imaginative social organiser, she was entrepreneurial in the way she thought and fun to be with. She also succeeded in being best friend to her daughter, Penny. And, as Penny Garner puts it, if your best friend says something, you pay attention.
So when, at 59, Dorothy started to show symptoms of dementia and simultaneously to provide illuminating shafts of information about what was happening to her, Penny watched and listened hard. Like her mother, she was intrigued. She remembers the day Dorothy, feeling agitated, stood in her kitchen holding a list of reminders written for her by her concerned — and highly organised — husband.
“She looked at us and said, ‘Can you explain what is the point of writing these lists if I’m not going to remember to read them?’” On another occasion at Penny’s home Dorothy brandished a milk bottle and asked where the fridge was. “I wouldn’t be asking if I didn’t need the information,” she explained.
Over five years or so Penny made a series of observations that has enabled her to develop a radical new treatment for all forms of dementia. Called Specal — Specialised Early Care for Alzheimer’s — which is also the name of her charity, based in Burford in Oxfordshire, it revolves around her insight that while people who have dementia cannot store new facts, they can store new feelings.
As we all run on what’s just happened, and they can’t store new facts, their fuel is feelings,” she points out. “It’s abundantly clear that feelings are more important than facts to the person with dementia.”
This means that when a well-meaning carer points out to the person that they have forgotten something — say, to post a letter — they feel embarrassed and agitated. They have been unable to store the new information about needing to post the letter, but because they have been confronted with this fact, of which they have no knowledge, their overwhelming feeling is that they are not in control. Penny’s therapy is designed to cut out the confrontation that causes the person with dementia to dwell on negative emotions, so that even though they can’t remember what has just happened, they feel content.
Last year Oliver James, the clinical psychologist and Penny’s son-in-law, explained Specal in a book called Contented Dementia, which this week becomes available in paperback. The hardback sales, 20,000 so far and achieved largely through word of mouth, show that it is acquiring a following in families affected by dementia, and Penny is aware that it is filtering into GPs’ surgeries and care homes.
She and James recently presented her ideas to the Shadow Health Minister, Lord McColl of Dulwich, at the Centre for Policy Studies (CPS), and it is likely that Specal will become part of a future Conservative government’s policy, not least because people are living longer. At present 700,000 people in the UK have dementia and their care costs £17 billion a year. If, as expected, the number of people with dementia doubles over the next 30 years, the cost of care will spiral much higher.
“Increasing longevity and the sheer number of people with dementia means that there’s a huge need to find a better way to help than heavily drugging them and providing a poor quality life, as often happens,” says Jill Kirby, director of the CPS.
“Getting the Specal programme into nursing homes and local authorities is not potentially costly and, more importantly, it is humane. It’s a thoughtful and practical way of dealing with the needs of people with dementia and the Conservatives are quite likely to take it up.”
In many ways Specal is an unlikely therapy. It’s creator may be extremely bright, charismatic and intuitive, but she is also a Cotswolds granny in her mid-sixties who has no medical or nursing qualifications, just the confidence to make up her own rules based on 30 years of working with people who have dementia.
And Specal can seem counterintuitive. Conventional logic may tell us to try to orientate a person who has dementia by reminding them that today is Monday and they have forgotten to do something. Much better not to challenge them, Penny suggests. Instead bypass what they can’t remember and tune in to their long-term memory, which is still functioning as brain scans have proved, and use that to make emotional connections that enable them to make sense of the present.
“They haven’t lost their ability to reason, they’ve lost the information that other people around them are using to reason with,” she says. “But they do have some substitute stuff in their memory. My mother could recall stacks of stuff and when she did that she was confident. She would make an intelligent match between what she saw and old facts. Sitting in the doctor’s waiting room, she would think she was at an airport and ask if our flight had been called. If I said, ‘Not yet’, she was happy.
“But by challenging her my father could reduce her very easily to a dithering wreck. I began to see that there were facts that she could access in her memory, but that she couldn’t reach them when she was stressed. She was showing me that she could be two different people: one the person who had always been there, the other deranged. My mother was in there and she was unchanged if she was in touch with language and information that she understood.” Penny uses the metaphor of a photograph album. The photographs represent memories that we all have and that we use to make sense of what is happening to us. For someone with dementia the recent pages are blank, the old pages much more complete.
Specal focuses on this stored information, which relates to the past when the person was capable and felt in control, and uses that to engender feelings of well-being. Doing this relies on understanding an individual’s past, especially their enthusiasms, and plugging into what’s there, protecting them from needing new information. If someone enjoyed growing vegetables, ferreting out the expressions they use that relate to that and using them regularly not only enables them to make sense of what is happening to them, but makes them feel safe, in control and induces calm. Something like showing them a packet of seeds or saying, “The carrots will be coming along nicely,” can be used to get them to a table for a meal, or to the bathroom.”
Above all, Penny insists, don’t ask questions, don’t contradict. “That throws them on to today’s page of pictures, which is blank, so they don’t have the answers. It’s as though their memory is an artificial leg. If you argue with them about their inability to recall the present you’re kicking that away, pointing out their disability and rendering them incompetent. The carer has to understand that it’s he or she who has got to change.”
Isn’t it unethical to collude with people who think they are waiting for a flight when they are in the doctor’s surgery? “Which is the more unethical?” Penny counters. “To insist that they find something that isn’t in their memory? Or to use what they have got and make as good a match as they can?”
Oliver James believes that it is unethical not to facilitate the happier state, and points out that there is a cultural inconsistency here as most adults are happy to encourage children to believe in tooth fairies and Father Christmas.
“In psychiatric terms, there is a world of difference between somebody claiming to be Queen Victoria, and somebody describing a memory,” he says. “If somebody is experiencing a past in their present and that is giving them wellbeing, where is the ethical case for potentially starting off a cycle of loss of self-confidence and fear of madness? That’s what happens when you impose your version of reality on theirs.”
Specal has been endorsed by the Royal College of Nursing and the Alzheimer’s Society, and carers who have used it have reported a plateau of decline in their clients. Penny believes that this is because Specal clients no longer feel frightened by a world that they can’t understand. Carers also benefit from the lack of stress, she says, and Specal obviates the need for antipsychotic drugs, which subdue 100,000 of the 244,000 people with dementia living in care homes. There are also considerable cost savings associated with Specal’s reduction of the use of acute medical care.
Its weakness is that as yet there is only anecdotal evidence to show that it works. Dorothy Johnson died in 1984; 25 years later Penny and her son-in-law know that a scientific validation of the procedures that she initiated is a high priority.
Source: Timesonline, August 3, 2009