Why we need a different kind of Dementia Awareness

My colleague Gill Bailey is the person who made me more aware of dementia, and kept nudging me to prioritise it in our work. This led to us working together in Bruce Lodge, a care home where about forty people who have a dementia live. Here we learned what it took to make sure people knew what mattered to everyone who lived there, and what good support meant – the little things and the big things. We introduced one-page profiles to the staff team, and ‘individual time’ where each person had two hours a month that they used to follow an interest, like football, or swimming or simply to have their nails done and a glass of wine. We started to explore what Community Circles could look like, and I am still part of May’s circle today. This was my plan – that we could share what we had learned at Bruce Lodge (in a book, through animates, through conferences) and then other people would invite us to do the same, and this is how we can make a contribution. That same year, a large national provider asked us to work with six of their care homes and this confirmed my thinking, that this was the way we could make change.

But it wasn’t.

Gill’s other nudge to me was around David Sheard and Dementia Care Matters. David’s strategy was also to support care homes to change, to become Butterfly Homes, with well-thought out process and evaluation. The first time we met was when we were both speaking at a staff conference for Community Integrated Care two years ago. We then connected over email and soon David asked me to speak at his 10th anniversary Dementia Care Matters conference. I felt honoured.

What I learned was that David and I were at similar places in our journeys. Both of us wanted to make a contribution in the lives of people living with a dementia and support staff. Both of us had demonstrated what was possible, David a hundred times more than I. Both of us realised that if we did more of the same, we could make a difference to some care homes, but we could never contribute to making change at scale.

At the same time training budgets have got smaller and attendance at conferences is difficult to fund. At H S A we have been looking at other ways to connect and learn together. We have been experimenting with technologies for building communities through Groupsite and Slack, using the more informal Zoom to connect as well as webinars and online courses. We had been learning what works, and what had not worked, and the challenges of using online forums and discussion groups.

I got in touch with David and Peter after speaking at his conference, to see if there was a way we could build a future contribution together.

These are the questions we asked ourselves. Could we:

  • Find a way for people to learn from outstanding Butterfly Homes about the best practices they could try and use in their care home?
  • Help people get an understanding of where they are now – their culture, their practices, so that it is clear what they may want to focus on next?
  • Get support about what they can do to move forward and make change?
  • Enable people to ask questions and have them answered live be connected to a wider community, internationally.
  • Could we go beyond discussion groups and forums and make it very easy for people to get the information they need and connect in other ways?
  • Get together each year in person and learn together in a different way and co-create what the community wanted to focus on the following year?

Last week we reached out to Dementia Care Matter’s existing membership group to share our idea. It is called The Butterfly Community. David describes this as the 5th significant event of his career. Please join our webinar if you want to join the conversation or visit the website if you want to learn more.

In Dementia Awareness week let’s stretch our awareness of what is possible, of how we can connect as a community, and how together we could make change at scale.

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