“In 1995 after 14 years working in dementia care in the NHS and social services, I arrived home to my partner and daughter saying I had resigned and could not run ‘factories in dementia care’ anymore. What did I mean by this? Twenty years ago something felt very wrong about dementia care – care homes with people sat around the edges of rooms, bored, staring into space, with an overall sense of lethargy and loneliness. Care homes with faceless, sterile and clinical environments felt a long way from having a sense of ‘home’ with features which seemed more like a prison, a hospital or a hotel. Common sense said it didn’t have to be like this and that great dementia care wasn’t rocket science. It’s just about treating people living with a dementia still as a whole person and so I set about a very long emotional journey to change the cultures of care within care homes”
Dr David Sheard, CEO/Founder, Dementia Care Matters
The Butterfly Household Model of Care
The first Butterfly Care Home began in 1995 at Merevale House, Atherstone in Warwickshire. At the time Anne Fretwell, the owner/manager was about to begin providing dementia care. I was working on my own in the very early days as a freelance dementia care consultant and trainer and many people believed in relation to my ideas in dementia care I was ‘the wacky guy from Pluto.’ I set off to meet Anne for the first time and returned home saying “this woman gets it and I am moving in to Merevale House and together we will prove that dementia care could be so different.” Twenty years on Butterfly Care Homes have now spread across the UK and Ireland and they are about to commence in Canada and Australia.
The early beginnings at Merevale House
In Episode 1 in the series Dementiaville you will see a Royal British Legion Care Home, Poppy Lodge at Galanos House in Southam, Warwickshire which has adopted the Butterfly Household Model of Care.
However back in 1995 at Merevale House these ideas were very radical and experimental. How did it all begin? It began with trusting instincts and gut reactions about what was currently wrong with dementia care at that time and starting again with new ideas. The basic new ideas were to create family-like care which meant getting rid of all the features of an institution. It meant also finding and recruiting genuine feeling based staff who had real heart. It involved filling the care home up with all the stuff of life to get rid of the sense of emptiness. Perhaps the biggest new idea of all was to train staff to accept people living with a dementia as they were – in other words to not force our reality on to people but to accept their reality.
The search for people with heart
Neither Anne Fretwell nor I really knew what would happen with this new approach but we set off with a passion and the zeal to prove that dementia care could be really different. Our adverts for staff read like this: “Do you wear your heart on your sleeve, would you share your life history with a stranger in a bus queue, can you walk in the room and change the moment?”
We were looking for staff with real heart, who felt like best friends, who could be fun and spontaneous and who were not tied up with previous formal training that had created professional distance. We wanted people who had a humanity about them and knew how to really reach and connect with the person on a feeling-based level. Like never seen before people responded to our advert – taxi drivers, hairdressers, hotel receptionists, guys who had worked previously in factories, none of whom had ever worked in a dementia care home but who clearly were people who were just born naturals in loving people as they are.
Thinking outside of the box
As people living with a dementia arrived to live in the first Butterfly Care Home at Merevale House this was all very new to everyone. Even now I maintain there are no experts in dementia care, you are only as good as your last idea, what works with a person living with a dementia yesterday may not work today, what worked an hour ago may not work in the next hour.
This therefore means that whether you are a family member, a nurse or a care worker, you need to be constantly thinking outside of the box and coming up with creative and imaginative ideas. The whole approach is based on the simple idea that you cannot fix people living with a dementia i.e. the damage that has occurred in their brain is not fixable. Therefore what a person with dementia says and does is what they truly believe because their brain is telling them this. No amount of ‘our truth’ will work because unfortunately we cannot replace the person’s damaged neurons in their brain.
Therefore forcing our truth, our reality will only cause significant distress, agitation and disturbance which can then lead to the person having no option other than to display ‘difficult behaviours.’ This new approach in 1995 instead saw we needed to fit our approach to see that people living with a dementia ‘are more feeling beings than thinking beings.’ This is because when you cannot rely on facts, logic, reason or memory due to your dementia then you are more reliant on your feelings which are not being damaged – feelings become more important because this is what you can trust. Therefore the new approach needed to accept people as they are and to focus on the fact that great dementia care needed to be about great emotional care.
Success – accepting people as they are
And so people living with dementia back in 1995 began arriving to live at Merevale House and I will never forget the way in which this new approach helped people to come alive again. Instead of sitting passively in a lounge in a care home, we worked on the basis that ‘how can you get up in the morning just being a person living with dementia? ’ And so our aim was to help people to have a sense of purpose, a sense of belonging and to feel they really matter. We believed the way to achieve this was to not set up people to fail living with a dementia, to not focus on what people couldn’t do and instead to focus on people’s skills that still were there. The whole idea was if people are struggling to make sense in the now then let’s help people to make sense of who they are by still helping them to be who they were:
- Instead of a woman walking and pacing up and down all day long, she was offered a doll to care for – she immediately took to cradling it, telling me the name of her baby, beaming with love and wanting to feed it.
- Instead of a woman shouting out in distress, we discovered she had previously been the manageress of a laundry and although now she did not recognise white automatic washing machines, when we gave her a galvanised dolly tub in the garden and placed an ironing board on the brick wall with a washing line, her shouting stopped and she busily and happily washed laundry all day.
- Instead of a woman sat with her head locked-down to her knees looking lost to the world, we discovered she had been a PA to someone famous so we surrounded her with postcards and photos of places around the world she had travelled with work, gave her a typewriter and stationary. Although she was too frail to use these things we could use these things and we would place a pretend letter in her hand saying it was a precious letter and could she look after it for us and she would lift her head and beam.
- Instead of a man at age 84 wielding a stick at us, constantly trying to get out of the care home, we discovered 20 years previously he had been a farmer and that in his reality he was trying to get back to his farm. We placed hard-boiled eggs under the bushes in the garden, telling him that the farm hens had laid their eggs all over the farm and that we couldn’t lock up the farm and give him his tea until he had collected them all in. EUREKA! He came alive, collecting the eggs each day, he was a lovely man and wouldn’t have dreamt ever of raising his stick at us. We discovered that everything a person living with a dementia says or does is total sense, there is a language of dementia and the language isn’t literal, it’s a language about feelings. We discovered that people struggling to live in the now and to hold on to recent memory can still live their own meaningful life and that people with help people can have a purpose again and need to be who they were.The ‘S’ Factor in dementia care Just like the X Factor programme on TV, we now believe that there is an S Factor i.e. a special factor in dementia care. Dementia Care Matters works with care homes across the country to release this S factor in Managers, Nurses and Care Workers to create really positive dementia care. We do this through some simple ideas:
- No them and us – getting rid of uniforms, badges, staff toilets, drug trolleys and people standing watching people eat. The whole idea is that people living with a dementia need to feel safe, loved and nurtured by people who feel not like staff in charge but like family.
- Creating houses – dividing Nursing Homes and Care Homes into a number of small houses for up to 10 people to live in. The whole idea is that people living with a dementia cannot cope or make sense of large institutional environments, they need the familiarity of a house that feels like a home.
- Removing controlling care – ensuring that all previous signs of controlling language and institutional controlling care is banned. The whole idea is that people living with a dementia can sense and react if they feel controlled and that behaviours diminish when controlling care is no longer evident.
- Being a butterfly – turning staff into being like a butterfly creating lots of short moments which transform people’s lives. The whole idea is that staff need to look colourful, staff need to know how to flit and connect to people in the moment. Like a butterfly staff also at times need to focus on how to be still with people instead of just focusing on tasks within the home.Dementia Care Matters is a leading Dementia Care Culture Change organisation in the UK and Ireland. There is a large UK network of care homes using their ‘Butterfly Household’ model of care within the public, charitable and independent sector providers. For further information go to their website at dementiacarematters.com