That’s what Dr. David Sheard asked himself in 1995, along with “What if people with dementia don’t have any behaviours?” and “What if we’re actually killing them?”
Based on the answers to those questions, he founded Dementia Care Matters and developed the Butterfly Household Model of Care, a framework that transforms the care home cultures and environments into ones in which people living with dementia can thrive instead of just die.
This Toronto Star video shows what that transformation looks like, and fills me with hope for the future:
More on the in-depth story entitled “The Fix,” by the Toronto Star’s Moira Walsh here.
https://myalzheimersstory.com/2018/05/24/5-ways-to-make-toast-in-long-term-dementia-care/
https://myalzheimersstory.com/2016/04/23/5-ways-we-rob-people-with-dementia-of-their-dignity/
My Alzheimer's Story 
Great video about the “Butterfly Project” but it left me a little cold. The most obvious was “Interior Design and Decoration.” It looked great. Beautiful paint, nice furniture, in a relatively new setting. It talked about “People who live here, people who work here, and people who visit here.”
The attitude of the staff seemed great. But honestly no real change. If you give me any facility, newly decorated, it is a beginning. The real test is can the facility provide enough staff to not only move, feed, and clean up the residents but really be able to spend time with the residents.
Buggys and babies, movies running on the RV, shooting basket balls hoops are all great but all is worthless without enough trained staff and staff time. No matter how well trained a staff member might be, and how much they are encouraged to just sit with or hold a hand … if the four or five staff are running themselves ragged to attend to the basic needs and cleanliness of 30-40 people, no change will take place.
I have seen one staff member in charge of a TV area (not big enough for all those in the room to be infront of the TV) being expected to not only monitor the residents, but also deal with tantrum bouts, falls, and calls for help – some five people needing attention and only one staff person in the room will not be able to hold any hands, or calm any resident, or offer anyone a drink or treat. Staff staff staff. Then training training training. Then maybe a beautiful environment.
This was my battle when I was at my husband Gregory’s facility and they were a reputable fine facility. This will be my battle again as now, three years after Gregory’s death, I will be getting to know the facility again as a volunteer (and advocate) and maybe even a “trouble maker!”
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Wow Michael. You got a totally different impression than I did, and it seems that, at least in this case, our positions are “reversed.”
I did not see this Butterfly initiative as comprising primarily cosmetic changes – the cosmetic changes were simply icing on the cake of the cultural change that was the fundamental driver imho. I might have missed something, but I don’t think so…
And I’m surprised to see you writing “This was my battle…” when it felt to me as if you often “defended” the facility when I made comments on your blog that were “anti” LTC.
Also, on what basis do you come up with the comment “But honestly no real change.”? Did you not hear what the doc said about happy staff and fewer sick days?
Frankly, I’m bamboozled by your comment.
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20 years ago as a care home manager, David Sheard inspired me and lit the passion in me for changing how we can care for people living with dementia. He is the reason for all of my career choices and why now my focus is dedicated to education and self reflection so people living with dementia are cared for by people who really believe in fulfilled living always. With the right people listening and as David say’s, ‘getting it’, things have changed – yes, we have a long way to go and the steps need to become giant ones rather than baby ones but more and more people are getting it now!
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Rachel,
Re: “more and more people are getting it now!”
Let’s hope so! I’m so glad that you are positively influenced by David Sheard, and have contributed to creating change these last 20 years – don’t stop 🙂
Susan
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I love that David Sheard gets choked up when he’s talking to the committee – that proves to me that his heart is in it, no matter how many times he shares his vision, which is such a beautiful one. And when the doctor says “As a physician, I will approach this with cautious optimism, I will wait to see the data” – THAT points out what’s wrong with the system. We have to evolve beyond the limited thinking that teaches physicians to rely soley on facts, and to disregard a patient’s emotions. Emotional wellness has to be as important as physical wellness, and physicians are dinosaurs in this area.
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Lorrie B, coincidentally, I was thinking about the term “evidence based” tonight. I have four years worth of “evidence-based” proof of my and Mom’s experience, but it’s not in exactly the same kind of evidence-based frame that researchers are accustomed to. Sigh. Perhaps we need a new definition of “evidence.” Another front in the battle 😛
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The new place that my mother-in- law is at is amazing. In the few months that she has been there it seems that her cognitive abilities have gotten better.
She is not allowed to sit in her room all day. The people living there are encouraged to walk around and to participate in activities.
Of course there are those who just want to sit in a chair – or their wheelchair – and sleep some of the day. But by and large more than 50% of the people we have seen when we go there are active to the best of their capacities.
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Yay anniegoose ! I’m so happy for your MIL and everyone around her –
including you. This is great news.
I’m wondering if you can share the name and location of the facility so I
can give them a shout out?
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The Butterfly Household Model of Care is about so much more than “Interior Design and Decoration” (see comment by MHORVICH). It is an amazing, beautiful, awe-inspiring model of care. It is about caring with the heart, putting the person before the task. It is about supporting the person living with dementia to live a life full of love, joy, fun, purpose, dignity, a sense of belonging, and being occupied. It is about fostering a sense of family and home, a sense of safety and security. It is about feeding their spirit and making moments matter. It’s about prioritizing the emotional wellbeing of the person. You don’t see all those expressions of feelings (“responsive behaviours”) that are so prevalent in so many care homes, because the person’s emotional needs are being met, not just the physical needs. Taking the time to do those extra things like sit and hold someone’s hand, or reminiscing, actually saves time because you’re not having to deal with escalations in “behaviour” due to unmet needs. There is significant reduction in falls and in the use of antipsychotics. Non-verbal people speaking again, reclusive people choosing to join in again, and staff who love, (yes, LOVE) coming to work. And the staff receive in-depth training.
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Everything you say is spot on cheerleader 🙂
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