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OPINION: Why the Butterfly Approach to dementia care is even more relevant now

Sally Knocker

By Sally Knocker, consultant for Meaningful Care Matters

The Butterfly Approach focuses on creating a truly person-centred approach where people are free to be themselves. The model values emotional intelligence, domestic household living, and the core belief that everyone living with a dementia has a unique story which has meaning and matters.

At Meaningful Care Matters, we have been told by many of our partners over the last few weeks that the Butterfly Approach is on hold. Of course, we completely understand that in a time of crisis everyone needs to totally focus on keeping people alive and well. Every care provider is constantly receiving different directives as to how best to do this using infection control, PPE, social distancing etc. We are all in a time of ‘high alert’ and in some cases dealing with unimaginable traumas with people who are seriously ill.

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But when we reflect on the key messages of the Butterfly Approach in terms of people’s emotional needs being as important as their physical needs, it becomes clearer to me that this can never be ‘on hold’. We forget this at our peril. Creating a sense of friends and family is at the core of the Butterfly philosophy. In times of trouble, families look out for each other and pull together, and we are seeing many wonderful examples of this in the care homes we work with. Our partners are finding many creative ways to stay connected and bring fun and variety into each new day. This is huge testimony to the commitment of team members who are under so much pressure.

For example, carers at the Sunnyside Home, in Kitchener, Region of Waterloo, have been exploring ways to connect with people beyond the mask. Reassurance and familiarity can be achieved through a soft tone and smiling eyes. Props such as teddy bears, flowers and silly hats can also focus attention away from the mask. Carers have even been performing fun little dances when greeting people to help them identify who is approaching them. 

Language, tone and a calm, friendly approach are as important as what’s on your face, but having a few props at your fingertips may help you change a moment when it is most needed. At the heart of The Butterfly Approach is love and a feeling of family. As Lindsay Marinovic, co-lead Butterfly Certification from Sunnyside Home explains: “We can laugh with the people we care for, cry with them, and make sure they know they are not alone. They may not be able to see our smiles right now, but they can still feel connected to us.” Mary Connell, Butterfly Model Project Manager and Dementia Advisor LTC, from Region of Peel, also stresses how important it is to know someone’s life stories and interests to reassure them if they are anxious. She described talking about stocks and shares to a man living with dementia who had a financial background when COVID-19 swabs were being taken by paramedics. It has never been more important to see each person as a unique individual.

We know that people living with dementia are often very tuned into the mood and emotions of those around them. Indeed, all of us are affected by the general sense of anxiety and fear that is hanging in the air around us. It hits us in waves and sometimes catches us in unexpected moments when we wake in the night, or see or hear something sad or shocking in the news. When we are fearful, many of us default to being more protective and controlling. Those of us who are parents will relate to this! What many managers are telling me is that some team members are becoming more restrictive in what they are permitting people to do. We are hearing more and more, “You can’t do that”, “Don’t touch”, or “You mustn’t go there”.  This comes from an understandable desire to keep people safe, but we need to watch that this doesn’t become the dominant culture of care moving forward.

In the short term, as we add more and more layers of protective equipment – the masks, the shields/visors, the gowns, we can be confident that we are doing our best to protect our workforce as well as those we care for. However, we need to be very cautious that in life beyond COVID-19, there isn’t a reaction which sets in place more extreme layers of interventions. There is a very real danger that these well-intentioned protective processes could seriously impact on the freedoms that bring joy to people’s daily lives, resulting in emotional barriers between people.

My 82-year-old mother has repeatedly told me during this crisis that she is not afraid of dying, but what she does fear is being alive and not really living. Is it not our ultimate goal as care providers to preserve quality of life, not just life itself?

Sally Knocker is a consultant at Meaningful Care Matters, a care and organisational development group that specialises in helping health and social care providers to access a variety of support services. The group helps to facilitate the creation, reinvigoration and sustainable implementation of person-centred care cultures where people matter, feelings matter and we are ‘Free to be Me’.

Tags : coronavirusdementiadementia careMeaningful Care Mattersopinion
Sarah Clarke

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