Dementiaville interview with Dr David Sheard

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It is predicted that 1 in 3 people in the UK will be affected by dementia in the future and with no known cure, this complex condition can destroy recent memories but leave some older ones intact, causing people to retreat to their past. Channel 4’s compelling and moving new series, Dementiaville, looks at a progressive approach to caring for people living with the condition. Here, Dr David Sheard, the architect of this new approach, explains more.

The new series, Dementiaville, focuses on a new way of caring for people living with a dementia. Can you explain a little bit more about it?
This whole approach began 20 years ago. In 1995, I’d been working 14 years in Health and Social Services, and I resigned from my job as general manager of Old Age Psychiatry for an NHS Trust. I arrived home to my partner and daughter with the words “I won’t run factories in dementia care anymore. I’m out of it.” So I began, on my own, with these ideas. And I was fortunate to meet a woman called Anne Fretwell, who runs, still, a care home in Warwickshire called Merevale House. She was the first person to trust me enough to start this approach, which is now called a Butterfly Care Home. Merevale House was a new dementia care home, and we began with some basic, simple ideas, which was to completely dismantle any features of an institution, so that there was no “them and us”. No uniforms, no nursing stations, no drug trolleys, no staff stood watching people eat. What we wanted to create was more family-like relationships.
The second principle was to recruit staff with emotional intelligence. In other words, people who knew what mattered most in life. We wanted to move away from a disease, symptom and behaviour model of dementia care to a model that believes that people living with dementia are essentially more feeling beings than thinking beings, and when you can’t rely on facts, logic and reason, you rely more on the emotional connection and quality to another person. So we really had to find the right staff. They may be a nurse or a care worker, they may not. We recruited taxi drivers, hotel receptionists, hairdressers, people who had worked on factory conveyer belts.
The third principle was then to fill the place up. We didn’t want clinical, sterile, magnolia corridors and rooms that created boredom, lethargy and people staring into space. We filled the place up with the stuff of life. People living with a dementia need to have stuff close to them. Feather boas, hats, tool kits, handbags. In large quantity, and placed close to people, so they can fiddle and touch and tear and rip and carry and sort in their way.

Part of the model of care is that you encourage people living with a dementia to embrace their past. How does that work?
I had started to decide that people's behaviour – the calling out or the repetition or the pacing – wasn’t just due to their symptoms of dementia, but was a sign of chronic distress, because they couldn’t work out who they were, or the environment that they were in. They’re searching inside themselves, saying “How can I possibly be like this?” So the approach was to say “Let’s help people to really live with dementia to be who they were – to make sense of today by being who they were in the past.” You can’t just sit in a room being a person with dementia.
So I began working with people as they arrived into the first Butterfly Care Home, to help them be who they were.

How does that work?
We had a woman who’d been moved on from four nursing homes in a row. They said she paced all day long and never sat down. Lots of people living with a dementia don’t settle at all, day or night. I’d read a lot about attachment theory – how we all need something in life to feel attached to, be it a child or a pet or a doll. So I remember very nervously holding a doll out towards her 20 years ago, because it went against all my previous training – and she literally snatched it off me. And within minutes she was sitting down with it, telling me the baby’s name, wanting to feed it, and starting to dress it. She started to come alive again.
Another example was a woman in the later stages of dementia who had her head locked down, and she would just scream repetitively, like an animal in distress. And we discovered she’d been a PA to someone, and had travelled the world with him. I remember surrounding her with photographs and postcards of all the places she’d been, giving her a typewriter, an envelope and pens. The staff were saying “She’s never going to use any of them,” and me saying “No, but we can.” We would create pretend letters, put them in her hand and we’d say to her “This is a really precious letter, we’ll be back for it later,” and she would lift her head and beam, and just sit smiling holding her letter.
There was a woman who’d been moved on from a few nursing homes, she’d get very, very angry. She’d been the manageress of a laundry, but she didn’t recognise modern washing machines. So we created a Victorian dolly tub out in the garden, a washing line, ironing board, and we’d supply her with laundry. And she’d say “I’ll never get home tonight, I’ll have to stop the night, there’s so much laundry to do.”
And the most famous one of all was Bill. He was 84, and very, very angry. He wielded a double-handed stick, which was why he’d been moved on. We discovered he’d been a farmer all his life, and after lunch in Merevale House he’d be trying to get back to the farm. And he’d do whatever it took. He’d take anybody down to get there. It took another careworker in the home saying “Will you let me boil a pan of hard boiled eggs?” The eggs were placed under the bushes in the garden after lunch, and Bill was told that the hens had laid their eggs all over the farm, and we had to get them all in. That was a Eureka moment. It worked, and it was done every day until the day he died.
Twenty years ago all of this was considered odd and quirky. But this has now become mainstream, and a significant number of homes in the UK and Ireland now practise this approach.

Allied to that, there’s also an idea about taking people back to a specific moment in their past to help connect with them. Could you explain about that?
It’s not about the recreation of the tangible moment as recreating their emotional memories. All of us have emotional memories, but we store them chronologically. We can recall them in their time and place. I believe what’s happening in people living with a dementia is that when you lose the facts, the logic, the reason and the short-term memories, you rely more on your emotional memories. But you experience them as if they were now. That could be a painful memory – death of a loved one – or happy, like an amazing holiday. They’re like flashpoints in your brain coming to the fore. Obviously we just try and restore the positive memories. It’s a way of saying to them “you’re not just a person with dementia. You were a mum or a dad. You had a job. You had purpose in life. You really mattered. And you still do now.

Dementia can take many different forms. Can your Butterfly approach help all people experiencing dementia?
It is an extremely individual experience with an individual progression. The approaches you see in the TV series are not as appropriate for people living with early stages of dementia. People living with early dementia are like you and I, but just forming gaps. They can be reoriented, brought back to the here-and-now and reminded of things. They tend to still want to hold on.
I use an analogy of a bridge. For a long time, people living with a dementia are on our side of the bridge, and want to hold on. But there’s a point where you cross the bridge and move over into a different reality. And that reality is as real as yours or mine, but you can’t get the person back to our side of the bridge. We have to cross to theirs. And that means using a language of feelings and not facts. They’ll often talk in metaphor – people in their 80s and 90s looking for their parents, or worrying about picking up their kids from school or being late for work. Or the most haunting one of all, “I want to go home.” Facts will not work. There’s no point telling them their parent would be 120 if they were alive. That’s what people used to be trained to do. When people are talking about these things, they’re not being literal. They’re not seeking their mum or dad or kids, work, or home, they’re saying “I need the feelings those things gave me. I need you to love me like my mum did. I need to be as busy here as I was at work.” They want to be at home inside themselves.
So overall, the approaches you see in the series are for people who have crossed the bridge.

Have you encountered a lot of hostility towards this approach?
A lot! People have referred to me as the Marmite Man of Dementia Care. Some people loathe this approach. It involves leaving a lot of past training behind, and that can be very difficult for a lot of professionals. It’s a hard pill to swallow. It wasn’t easy for me to think all my past training was wrong. People have to go through a pain barrier to accept this approach. Some families don’t like this approach, because it’s a human instinct to want your relatives back. You want them back as they were.

I remember once talking to a husband  and saying to him “You can keep visiting her and trying to get her to remember everything about the lives you had together, and to sit in your car in tears at the pain of it all. Or you can cross the bridge, join her on the other side of the bridge, and realise that she may not always remember who you actually are, but she senses you’re a friend, that you mean something to her, and that you love her. You will still sit in the car afterwards and shed a tear, but you will be left with loving memories.”
Our whole world is based on logic and factual reasoning. Whether you’re a carer or a family member, it’s not easy to let that world go. You can’t fix dementia. You can’t fix the person. But we can fix our approach.

How widely is the approach now used?
Twenty years ago, not at all. Ten years ago I was despairing and about to give up. In the last five years, I’ve been really heartened. It’s spreading like wildfire everywhere. I’m about to spend June in Australia. We’ve Butterfly care homes being launched in July in Canada. It’s suddenly as if its time has come. People have begun to realise “This works. This is the future of dementia care.”

Do you think those who have ‘crossed the bridge’ are aware of their situation and unhappy with it?
Absolutely. We articulate how we feel to family and friends. What happens to people who cross the bridge is, they show it. They don’t have the panoply of words to use, so by picking at themselves or rolling their clothes up or fiddling, pacing, walking, what they’re actually saying is “Notice me. I’m struggling. I’m pushed to the edge of what it is to be a person. I need you to re-find me and help me come back.” Some people use the phrase that my approach to dementia helps people ‘come alive’. This is not a cure, their dementia is not getting better, the neurological damage is increasing, but what it does is it helps people living with a  dementia to not die inside. It helps the spirit stay alive.

You started working in this field 35 years ago. What’s changed in that time?
In my first job, I arrived at a Victorian hospital, I was met by someone with a bunch of keys, who unlocked door after door. I knew I’d got to the ward for people living with dementia because it was a locked door, there was a glass panel, and there were faces pressed to the glass panel. I remember, when the door was unlocked, standing there, and my stomach lurched as I saw people screaming, people naked, people clustering around me, and I just thought “Oh my God. Please tell me this isn’t it? It can’t be like this!” And then they started closing all the Victorian Hospitals, and moving people with dementia into care homes. But the Victorian model moved with them, so there were still locked doors, pin codes, huge levels of drugs to calm them down, effectively chemically coshing them. They would sit, head down, looking as if they weren’t part of this world.
Fortunately, now, we have a National Dementia Strategy, people have accepted that people living with a dementia are whole human beings, still. I think what’s not yet been accepted is the complete dismantling of the old model of care. We’ve got a confused model of care, with some of it coming from the old hospital model, and some of it coming from the hotel model, as if by surrounding people with beautiful curtains and carpets, somehow we’ve created great dementia care.

Does it ever get depressing, working in a field where people have an irreversible neurological condition?
I wouldn’t say it’s depressing, but I would say it’s emotionally taxing. If you’re going to really believe in this model and approach, you have to be prepared to shed your own mask in life. You have to be very real, very emotionally in the raw, and connected to what it really feels like. That brings with it an emotional cost. That’s why some nurses and care workers want to hold on to the uniform, they want to hold on to their professional distance. I describe what we do as emotional labour.

What are the key messages that you would like to get across to people who are caring for dementia experiencing a dementia ?
My biggest message would be that people living with a dementia are more feeling beings than thinking beings. Therefore feelings really matter. Don’t beat yourself up about being the perfect carer, we’re only human. But when you can, search for the meaning behind the person’s behaviour. There’s always a meaning, and the meaning is likely to be an expression of the feeling they’re trying to get across.