A voice for Britain’s dementia sufferers: how our campaign has built awareness
Dementia is a condition that is affecting more and more people and their families in an ageing population. It is a condition that, as well as a person’s memory, can affect their ability to communicate. This can obviously be distressing, not only for the person with dementia, but also for their family and friends.
Speech and language therapists are increasingly being called upon to help with this client group in enabling the dementia sufferer to communicate more easily with those who are close to them.
Often people with the disease have other health problems which mean they are in hospital.
The Guardian reports that two months ago, Nicci Gerrard wrote about her campaign to allow more visiting time for loved ones with dementia. It provoked a huge response.
The Guardian reports………………“Major triumphs often come from small and modest first steps and a cry from the heart. In November, barely eight weeks ago, Nicci Gerrard wrote about her father, a former GP and businessman, John Gerrard. He had suffered from dementia for several years since his mid-70s, before entering hospital in February 2014, aged 86, with leg ulcers. He was admitted, the author and journalist wrote, “strong, mobile, healthy, continent, reasonably articulate and cheerful”. Five weeks later, after an outbreak of norovirus meant his family could see him only infrequently, he emerged “skeletal, incontinent, immobile, incoherent, lost”.
In a hospital ward, if a person with dementia is “left to himself”, however good the medical care, then the fragile anchor that is embedded in what is familiar, safe and recognised is abruptly pulled up. “At his time of need,” Gerrard wrote, “we didn’t rescue him. We let him go.”
The article announced the launch of a drive to allow carers to remain with a loved one on wards outside of visiting hours. “John’s Campaign”, as it is called, has the slogan “Stay with Me”. Gerrard and her friend, Julia Jones, whose mother has Alzheimer’s disease, wanted not just a carer’s right to remain with a relative with dementia but also large posters on the door of every hospital ward, welcoming carers and their contribution.
Last month Gerrard wrote a second article in the Observer charting the extraordinary momentum of the campaign as still more letters, tweets and emails poured in from readers all over the country, offering support, telling stories of huge distress – a patient who lost 30 kilos in six weeks; a son who was told by a consultant to remove his mother from the ward to give her extra weeks of life – and shining examples of care and compassion.
Initially, Gerrard had argued, “there is a door that has to be opened – pulled by hospital staff, pushed by the public”. Without flagging, the two women have visited NHS trusts and dementia organisations up and down the country, lobbying and persuading. What they have discovered is that in many hospitals the door is more than ajar, and in a few it is already wide open.
On Friday, Gerrard and Jones met Jo James, dementia lead at Imperial College Healthcare NHS trust. It has several large hospitals in London, including Charing Cross and Hammersmith hospitals. We met at St Mary’s Hospital, Paddington. “Jo contacted us immediately after the first article, “ Gerrard says, beaming with delight to see her words turned into action. “She said: ‘we can do this’. And now she has.”
James and her team, dementia clinical nurse specialists Jules Knight and Beth Cotton, have been part of an effort that for two years has been working to turn the trust into a dementia-friendly organisation. “We work to ensure that every change we make is first owned by the nurses,” James explains. Now, as a result of John’s Campaign, every ward has a poster on its door welcoming carers. In addition, each carer is given a “passport” the size of a business card that reads: “This card allows me to visit outside of visiting hours.”
“Just because a relative comes into hospital,” Knight says, “it doesn’t mean the family stops loving them: so why shouldn’t they be with a person full time?”
In 1974 there were 350,000 people with dementia in the UK. Last year the number had grown to 816,000, a 74 per cent increase. According to Martin Knapp, professor of social policy at the London School of Economics, that growth is likely to quicken as the population ages.
He estimates that the total cost to the UK economy is already £26bn a year. It is imperative for quality of life and the health of the public purse that we invest in research: £52m went into dementia research last year compared with £600m spent on cancer research. It is also important to diagnose earlier and make the small gestures that allow those with diagnosis to live well for as long as possible.
Instead, however, almost half of the people with dementia who go into hospital are less well when they leave than when they were admitted. Over a quarter of hospital beds in the UK are occupied by people with dementia.
Nobody had told the nurses when my late father was admitted with a chest infection that he could neither speak nor feed himself, but it didn’t need medical notes to observe that he was frightened of the bright lights, shiny floors, invasive routine and noise.
Professor June Andrews, a former nurse and director of the Dementia Services Development Centre at the University of Stirling, advises in a book published this month that relatives should become “guerrilla visitors” if a ward is reluctant to let them stay. “Every hospital room is going to have a dementia patient in it, at some point.”
At Imperial College Healthcare NHS trust the culture is changing rapidly. Staff receive dementia training; tea parties for dementia patients and nursing staff are held in public places; a weekly carers’ clinic offers a drop-in session for relatives, friends and staff.
Knight tells of one patient who was judged aggressive. “Bish! Bash! Bosh! He kept going with his fists,” she says. “We found out he’d been a boxer. We made him a book about boxing and he recognised his old sparring partner immediately. ‘Oh, it’s Henry!’ he said. Henry Cooper. He calmed down once we understood.”
In addition to life-story books, the team makes activity kits to distract, for instance, patients with dementia receiving dialysis on the renal ward. Other hospitals have introduced space for dementia “walkers” to roam, or bright colour schemes and access to the outdoors. But the change is haphazard. Gerrard and Jones are seeing Norman Lamb, the minister for care, next week. He has already said that opening wards is an individual hospital decision. Gerrard wants government guidance to ensure all trusts obey, and an invitation to meet Jeremy Hunt, the health minister. “We can do this.”
The Observer launched a campaign in the early 1960s, initiated by James Robertson, psychoanalyst and maker of the groundbreaking film A Two Year Old Goes into Hospital. He successfully fought for unrestricted hospital visiting for child patients, some of whom may well be the carers now shut out of wards.
At the time, parents were either forbidden to see their children or visit for only an hour a day. One mother wrote of her 20-month-old daughter, hospitalised with an eye infection: “Unable to see, she was taken from me into a strange building full of strange and unfamiliar noises. She was terrified and bewildered.” Substitute the toddler for a 70-year-old with dementia, and the unnecessary pain and suffering, in the name of healing, is horrendously similar. It isn’t malice at work but bureaucracy and fear of change.
However, change doesn’t have to be the enemy. Small steps are being taken all over the country. In 2012 David Cameron issued a challenge to make every community “dementia friendly”.
The Alzheimer’s Society has overseen the training of thousands of individuals as “dementia friends”. Gill Hill, 40, a PhD student, is the daughter of a farmer. She has been matched with Erica, who is nearly blind and suffering from dementia; Erica’s husband, Bill, was also a farmer.
Every Monday morning, Hill visits for a chat and sometimes a jaunt out. “Erica has become a real friend. She is lovely and hilarious, “ she says. “ I look forward to going. It’s not that she’s isolated: she has plenty of family and friends. But because I’ve been trained, I’m the one to whom she can say, ‘This is driving me mad’.”
At the civic level, Leeds was one of the first five cities to sign up to Cameron’s dementia challenge. Twenty per cent of the population there is over 65. Mick Ward, head of commissioning for adult social services, supported by Andrew Ogilvie, executive member for adult social care, has set up a Dementia Action Alliance, as have other towns and cities. It has gathered pace in the past 12 months.
“Living well with dementia means more than signs and stickers and a memory clinic,” Ward says. “People ought to feel safe in their own communities and to be seen as having assets and interests, not just a diagnosis.”
In one area of Leeds, Rothwell, the campaign took proper root, after one person with dementia walked out of a cafe without paying.
Maggie Graham, co-coordinator of the Alliance, has 70 companies signed up – including, last week, Leeds United, claiming the title of first dementia-friendly football club. Twenty supporters with dementia and their carers attended last week’s home game (Leeds lost 1-0 to Brentford; “It can’t be all good news,” says Alan Scorfield, who is leading the initiative, drily.) Staff will receive training and the facilities will be adjusted (with, for example, bigger signs).
In Leeds, as in other parts of the country, one person can begin a remarkable chain reaction. Peter Smith’s mother was diagnosed in 2002. “I knew nothing about dementia, I couldn’t even spell it,” he says. Now, aged 68 and retired, he runs a number of dementia cafes as a volunteer.
In 2011, for instance, the Tea Cosy Memorial Cafe began with eight people; last month 143 turned up for tea, cakes and a chat. Smith runs sessions in three local pubs: once a week the Hare and Hounds become the Care’N’Hounds. Another group will begin soon at the new Leeds police station, called Cop a Cuppa.
The small, magical innovations are coming faster by the week. A car hire firm has two extra addresses for registered dementia sufferers, so if the destination is forgotten there is another place of safety. A hairdresser offers a spare chair and a cup of tea, so that having dementia and a hairdo becomes a normal part of everyday service.
Joy and Tony Watson in Eccles are also catalysts in their own community. Joy was increasingly concerned about her forgetfulness and spatial difficulties, but she was told she was too young to have dementia. The couple moved from Kent to Salford and two years ago, on her 55th birthday, Joy was told she had Alzheimer’s.
She has nursed her in-laws with the disease. “I don’t know where this journey takes me, but I do know where it ends,” she says. She and her husband are quietly remarkable, as are many families turning this terrible illness into a series of opportunities. First, the couple produced a leaflet and distributed it to all the local shops in Eccles, and, with the help of the Alzheimer’s Society, offered dementia training too. Then Tony designed a badge, at Joy’s request, that says: “I have Alzheimer’s: please be patient.”
“It’s not for everyone, but it’s worked for me,” she says.
City West Housing Trust, a local housing association, offered to take over the printing of leaflets and badges. The couple fundraise. “I’ve put my name down to go on the longest zipwire in Wales when it opens,” Joy says. “And I’m terrified of heights.” They have also set up a weekly young dementia support group. It began with three couples a year ago, and now between 24 and 40 attend regularly. “Bingo is fine for older people but we wanted something else. When my parents were ill, it was the D word, dreaded like cancer,” says Tony, a retired manager of a truck hire business. “Now, it has to be out in the open, a part of life.”
“I’ve got dozens and dozens of tubes of toothpaste at home. “ Joy says. “I’m out shopping and I definitely need toothpaste. I get home and there are 15 tubes in the cupboard.
“It’s the nature of the beast, but it won’t get the better of me. I am determined to live well.”
Valerie Blumenthal, 66, a novelist in Oxfordshire, like the writer Terry Pratchett, has Posterior Cortical Atrophy (PCA) – a form of Alzheimer’s that affects the back of the brain, visual and spatial functions, and not cognitive abilities. “I sit down on a seat that isn’t there,” she says without self-pity. On International Women’s Day she will speak on behalf of Alzheimer’s Research at the Women of the World festival at London’s South Bank, for greater awareness.
“My GP had never heard of PCA,” she says. “We need more openness and notices everywhere to remind people that my norm isn’t necessarily everybody’s norm. People have disabilities and some aren’t obvious. We need billboards with lots of faces, young and old, that read: ‘This is the face of Alzheimer’s’.
For Gerrard and Jones, the campaign goes on to open ward doors permanently to carers across Britain. “What we’ve learned is how many wonderful people are out there – unpaid, unsung, working away to make a difference,” Gerrard says. “We all have to do this, for our parents, for our children – and for ourselves.” ”
For more information go to: The Guardian
Written by Rachel Harrison, speech and language therapist, on behalf of Integrated Treatment Services.
