The world is in desperate need of a change in the way we care for persons living with a dementia. The culture of care in many care homes around the world today is heartbreaking, persons with dementia simply existing, left to stare at empty spaces for hours on end, day after dreary day. Dr. David Sheard, founder of Dementia Care Matters (DCM), says that we are killing them with boredom, we are killing their spirit. The time has come to change this malignant culture. There is a way to bring life back into the care environment, to provide a life full of purpose and joy for persons with dementia living in our care homes.
I first heard Dr. David Sheard speak in February 2009, at the People & Progress Conference in Edmonton, Alberta, Canada. His passion for feelings based, person-centred care, and his vision for supporting those living with a dementia, captured my attention. I vividly remember the elation and relief I felt as I listened to him speak. He validated everything I believed about what dementia care should be, and gave me hope for its future in Canada. I have heard him speak many times since, watched his videos, read his articles and books, and had the privilege of attending DCM’s 12 Module Culture Change Course offered for the first time in Canada in 2016. I have met other members of the DCM team and some of the people involved in Butterfly homes in the UK and Canada. My belief in the Butterfly Household® Model of Care strengthens the more I see, hear, and read about how this model brings the person with dementia alive again.
Nurturing the Spirit
Between October 18, 2016 and November 5, 2016 I fulfilled a dream of mine to travel to the UK and see where Dementia Care Matters and the Butterfly Household® Model of Care began. I cannot put into words the overwhelming sense of belonging, of coming home, that I felt during my visit to the UK. It was such an inspirational and validating experience. The people I met during my visit were incredibly warm and welcoming, kindred spirits who share a passion for feelings-based, person-centred care, and the Butterfly Households I visited were beyond my expectations. I visited seven in total, two in Wales and five in England, care homes that I once only dreamed existed. These are homes where “feelings matter most” (Sheard, D), where a person’s spirit is nurtured, that really, truly, are Home.
Each household I visited was unique to the individuals who live and work there. Some were full of brightly painted walls, in others the paint was less dramatic, but still colorful. They don’t all have the same cookie-cutter design. They do have key things in common. They are filled with love, compassion, and the “stuff of life” (Sheard, D). All strive to give the persons living in the home a sense of purpose, of belonging, of being important. They have happy, loving, emotionally intelligent, creative staff who are supported by inspirational leaders full of heart and vision. I saw evidence throughout each home of the deep understanding the staff have of the person they are caring for. They are tuned into the feelings the person with dementia is expressing through words and/or actions, and they are incredibly adept at validating those feelings, and at nurturing that person’s spirit.
In every home I visited the persons living there were actively engaged, acknowledged, and encouraged. They are living a life full of purpose, and with a sense of pride in being able to contribute to the household. There is the gentleman with a Navy past who likes everything kept in order. He spends his day sweeping, tidying and smiling from ear to ear as staff thank him and comment on a job well done. The woman who was a homemaker all her adult life, standing at the kitchen sink helping to do the dishes, her face lit up with a beaming smile when told she has been a great help. Persons living with dementia being assisted to participate in the normal activities of daily living to the extent that they are willing and able to do so. Staff “being with” (Sheard, D) the person and not just “doing for” (Sheard, D), fostering a sense of family and home. You see the person in later stages and less able, quietly supported by someone holding their hand, massaging their arm, just being with them, providing comfort without the need for words or a busy activity.
As you walk through the hallways of these homes you see the personalities and life stories of the persons living there throughout the environment, not just their room. Anywhere they go they see something familiar and comforting, something to reminisce about, to grab their attention, something to occupy them and keep boredom at bay. The woman who was a dancer seeing photos of dancing sprinkled around the home, dance costumes and dance shoes displayed. The gentleman who was a crane operator and chimney sweep enthusiast seeing photos and models of cranes in the hallway, and photos of chimney sweeps. The travel enthusiast seeing postcards and mementos from around the world displayed on the walls, tables, and bookshelves leading up to his room.
Then there is the story board outside a man’s room that asks “Have you ever wondered why Bill calls for help?” It talks about how this gentleman was stranded in the Ganges Rainforest during WWII, all alone, parachute entangled in the trees, and how he managed to survive. I was overwhelmed by this display of the very deep understanding the persons working in this home had of the persons who live there. Everywhere you look there is evidence of this in the homes I visited.
The UK Butterfly Households were welcoming and so willing to share their passion for feelings-based, person-centred care. You could see, hear, and feel the love in each and every one. I learned so much that I can now share with others, so many ideas on how to help bring life back into the lives of those living in our homes. It baffles me that everyone doesn’t “get it” (Sheard, D). Throughout the UK there are Butterfly Households that have proven that this model works.
Not an easy road to travel
Culture change is not for the faint hearted. It is hard work. You will face massive resistance from those who wish to maintain the status quo. Not only from staff, but from regulators entrenched in the biomedical model who believe in strict professional boundaries and are massively risk adverse. You will need to advocate for the person’s right to feel at home, loved, and to live at risk, as this is vital to their well-being. What good is removing all emotional and physical risk from someone’s life if it means that you remove all that brings joy and purpose to their life in order to achieve it?
Examination of hiring practices, the physical environment, and policies/ procedures that perpetuate the ‘them and us’ controlling culture of care is required, as these must change. You need emotionally intelligent staff with insight into their own emotional history, and a home-like, family environment. Spend a day sitting in the lounge of your residence and observe what it looks, sounds, and feels like. Does it feel like home?
Someone told me once that culture change was like chipping away at concrete, it takes passion, perseverance, and time, but it can be done. There are many tools available to help you as you move towards a feelings-based, truly person-centred culture of care. Seek out those who have already travelled this path for support and guidance.
Seeing is believing
There are those in Canada who say it will never work here, things are different in the UK. I disagree. We have organizations in Canada that have “recognized the truth” (Sheard, D). There are six Butterfly Households in Alberta and one in Ontario. Arrange a visit and see for yourselves that this model can work in Canada.
If you look for creativity and emotional intelligence in those you hire, no matter what their role, and if you have inspirational, committed leaders with heart and vision to support them, this method of care will work no matter where you live. Give your employees the tools they need, and permission to put the emotional needs of the person they are caring for ahead of the task, and it will succeed. Feelings really do matter most in dementia care.
NOTE: Dementia Care Matters ceased operations in December 2019.
Here is a link to a video that shows you a bit about what I have talked about in this blog: https://youtu.be/4gcaElkEFfE
Watch the transformation of Peel Region’s Redstone dementia unit in a 21-minute mini documentary: https://www.youtube.com/watch?v=aYrMu3ujs-Y
Dementia Care Matters YouTube channel: www.youtube.com/user/DementiaCareMatters
This post was updated on June 15, 2021