From The Sunday Times
February 28, 2010
A pioneering care project demonstates how literature, music, art and love can improve the lives of dementia sufferers
In her heyday, Rita Hayworth was known as the “Love Goddess”: so explosive was her appeal that her image was placed on the first nuclear bomb to be tested on Bikini Atoll after the second world war. As befits one of the world’s most glamorous women, she danced her way through 61 movies and five husbands. She was a pin-up for American servicemen and is listed as one of the American Film Institute’s greatest stars of all time.
But if Hayworth’s early life was sprinkled with stardust, her later life was tinged with tragedy. In her fifties, with a well established drink problem, she began to suffer mood swings and memory loss.
“The first signs were fear and extreme mood changes, paranoia — calling the police because she heard a burglar — and confusion. As a daughter I felt helpless,” says Princess Yasmin Aga Khan, Hayworth’s daughter by her third husband.
Nobody knew what the real problem was until Hayworth was diagnosed with Alzheimer’s in 1981, at just 63 years old. “It was extremely painful but I had to deal with it,” says Khan, who moved her mother into an adjoining apartment in New York and cared for her for the next six years until she died.
Hayworth’s behaviour could be nightmarishly difficult. She suffered from the anxiety, aggression and agitation common to Alzheimer’s, but as the disease progressed she found something that soothed her mood and gave her a focus — painting.
As her mind disintegrated, she worked away at an easel in her apartment, producing beautiful, detailed likenesses of flowers. “So many people give up with this disease,” says the princess, who is now president of Alzheimer’s Disease International, the umbrella organisation for Alzheimer’s associations around the world, “but it brought her peace of mind and helped her to relax.”
Could Hayworth’s experience help us to understand how to support and treat people with Alzheimer’s? John Zeisel, the founder of a pioneering programme caring for people with Alzheimer’s in the United States — endorsed by Khan — and a visiting lecturer at Salford University, believes that it could.
“What the scientific research tells us is that Alzheimer’s attacks the part of the brain that handles what we call logic — the executive function that copes with handling complex situations. Taking a photograph, for instance: you have to find the camera, slot in the memory chip, work out where the shutter button is and so on . . .
“But what’s not damaged is your appreciation of a beautiful picture. The part of the brain that deals with emotions is shaken up by Alzheimer’s but it’s not damaged in the same way. In fact, emotional response seems to be heightened, not lessened.”
In other words, people who appear to be lost to the world can still be reached through art, literature and music — and love. At Hearthstone, a group of seven homes looking after some 220 people with Alzheimer’s that Zeisel had helped to found in Massachusetts, residents are encouraged to paint and are taken on regular outings to galleries. They have reading circles and a film club.
“The development of new drugs to treat Alzheimer’s is helping people live a little bit longer,” says Zeisel. “What we’re asking ourselves is, how do we make that life worth living?”
Life expectancy remained low for centuries — in 1900 it was still only 47 — but advances in medical science and public health have added another 30 years to our lives. A British man can now expect to live until 77 and a woman until 81.
That increase in lifespan has brought with it a tidal wave of dementia, for which there is no cure. There are 700,000 people living with dementia in the UK, some 417,000 of them with Alzheimer’s. By 2015 that total is predicted to reach 1m and by 2050 it will be 1.7m.
“Everything has happened so fast we don’t know what’s hit us,” says Zeisel. “One of the reasons everybody’s so afraid of Alzheimer’s is that there are so many unknowns. When someone is diagnosed, we grieve for their lost future. But maybe everything isn’t lost: we have to get past the fear and grief to see what remains.”
I’m Still Here, Zeisel’s book about the development of the Hearthstone programme, is to be published in paperback by Piatkus next month. On March 15 he is hosting an arts and dementia day at London’s October gallery, an event that is already booked out.
One of the first things the Hearthstone team looks for is an activity that elicits a response from a new resident. It might be an old hobby — gardening, perhaps — or something new. “Families come in and say, ‘My father doesn’t dance’, and I say, ‘Well, we’ll see — maybe he’s never been surrounded by women and nice music before’.”
They then build a routine around the activity. George, a former teacher, arrived at Hearthstone anxious and aggressive and, on the assumption that he would like books, was taken to the library. He now runs a residents’ book circle at 10 o’clock each morning.
“It’s a reason to get up and get dressed,” says Zeisel. “If he’s upset or confused, the staff will say, ‘You’ve got to get dressed, the book group needs you’. He has a meaningful role. He passes books around, he and the others read aloud. Often people with dementia give up on reading because the type is too small. It seems confusing but it’s easy to fix — our books have large type.”
This kind of meaningful role, plus a simple routine, is key to helping people with dementia cope with life. “It’s not just about activities,” says Zeisel. “If it’s ‘bingo at 10, muffins at 11’ one day and ‘reading at 10, gardening at 11’ tomorrow, that doesn’t work. It’s confusing. If we go to an art gallery, we go every Tuesday at 11. Someone might say they don’t want to go but after a month they’ll wake up and hear it’s Tuesday and think, ‘Okay, it’s gallery day’.”
One of the things we need to get away from is the constant testing of people with dementia, he says. Bombarding them with questions compounds confusion with a sense of failure. Rather than say, “Mum, do you know who I am?” it is better to walk in, take her by the hand and say, “I’m your daughter and I love you.” And smile. You’ll reach the bit of the brain hard-wired to respond. If you are looking at a painting, don’t test her on whether she can remember who it is by: instead, open a conversation about the shapes and colours.
People with Alzheimer’s need to stay useful. They might not be able to find the dinner plates, but if you get the plates out of the cupboard they can put them on the table. This is not a cure, nor even a replacement for drugs, although Zeisel insists that the more effective the “person-centred” care, the lower the need for the antipsychotic drugs used to treat Alzheimer’s.
In essence, it is about quality of life for the people with Alzheimer’s and their families. You don’t need a team of highly trained art therapists on hand to make a difference. If you are one of the thousands of people stuck at home caring for someone with Alzheimer’s — saving the government an estimated £6 billion a year in the process — here’s what to do.
“Start an Alzheimer’s community,” says Zeisel. “There will be a cafe near you that’s quiet at 10 o’clock on a Tuesday morning run by some nice person who will smile at your mother. Find other people in your situation and invite them along.
“Go to a museum, same date, same time. Create a routine so the person you’re looking after gets used to it and expects it.
“Start your own film club. Rent a bunch of films you think your mother might like. See what interests her. It might be she can’t watch a whole movie but loves 10 minutes of Singin’ in the Rain. Play it when she’s agitated and remember: everybody is reachable, it’s just finding the way to do it.”