Last week we were very honoured to attend and run a workshop at the 23rd Alzheimer Europe Conference ‘Living well in a dementia-friendly society’, Malta 10-12 October 2013. I attended with Shahana Ramsden. We have written this blogpost together and published it first on the Think Local, Act Personal (TLAP) website and now here on my own blog… with some added tweets, photos and a short video capturing the buzz of the session! It is the first of what we hope will be a series of posts sharing our experiences and learning from this wonderfully inclusive European event.
By Gill Phillips, Director of Nutshell Communications and creator of Whose Shoes?® – Making it Real; and Shahana Ramsden, Making it Real Project Manager, Senior Co-production and Equalities Lead, Think Local Act Personal.
“In tough times we need something to aspire to”, our strap line for TLAP’s Making it Real programme, felt very relevant at the Alzheimer Europe conference this year. We had spent the Saturday morning hearing presentations about Dementia Strategies and policies across, France, UK, USA, Netherlands and Greece. It was clear that although each country had different decision-making structures, distinct terminology and diverse approaches to funding health and social care, there was a common theme about wanting to keep people touched by dementia at the centre of all decisions made.
One of the most thought-provoking and powerful presentations in the morning was delivered by Areti Efthymuiou from Greece, who talked about the impact of the financial crisis on people living with dementia and their family carers. In response to a survey led by Alzheimer Athens, over 60% of respondents confirmed that the economic crisis has impacted on their mental health and anxiety levels. It was clear from their responses that unemployment, reduced income and a complete absence of support, restricted people’s ability to live meaningful lives, including their opportunities to socialize and their ability to care for one another. This was leading to increased levels of distress, compounding loneliness and creating an environment of crisis management. With 55% cut backs in funding for care, this certainly put our position in the UK into perspective.
Furthermore, this reminded us that when finances are tight, the people who are most in need of support are often the least likely to have their voices heard when decision makers decide where the funding axe should fall.
Working in this context, we had a hint of nervousness as we set up our joint Whose Shoes?® – Making it Real workshop* at the Alzheimer Europe conference. We wanted to share ideas and learning from Whose Shoes?® and Making it Real and knew that this was an opportunity for people in Europe to hear about TLAP’s work. The post-lunch session took place on a Saturday afternoon, after a morning of intellectual and stimulating presentations – so there was some pressure to ensure that we matched the quality and professionalism of the presentations that had gone before us.
An important part of our session was to ensure that people living with dementia had a strong presence in this workshop. We had used email and informal conversations to engage in advance with the amazing European Working Group of People with Dementia and Kate Swaffer from Australia to co-produce the excellent icebreaker and discussion materials.
During pre-planning, with so many stories and materials to share, we made the difficult decision to have a single focus for the session – to walk in the shoes of a person with younger onset dementia, and to enable participants to respond emotionally and personally to the messages that we shared with them. We extracted the two key themes of choice and stigma on which to hinge the conversations.
With the permission of Kate Swaffer, an inspirational colleague living with younger onset dementia, we focused our session on Kate’s story and built all the materials around Kate’s messages. We wanted our discussions to be interactive, to have an element of fun and most importantly to get people round the table talking. The Whose Shoes?® tool incorporating Kate’s messages and Making it Real was an ideal vehicle to enable people to get into these conversations quickly and without limits.
We were encouraged by the fact that people arrived at the workshop early, and that by the time we were due to start, we had 70 to 80 people in a room (designed and set up for 50). The inquisitive chatter quickly disappeared as Gill opened the session and there was pin drop silence as Shahana involved people in an icebreaker to help them to engage with their own emotions. This turned to respectful listening as Kate’s story was projected onto the screen.
As we moved into workshop discussions, we asked people to provide solution-focused leadership and people quickly and naturally found answers to the challenge of ensuring that everyone could participate across diverse languages and ability levels – and against an enormous buzz of animated voices. On one table a resourceful participant set herself up as a translator, deciphering discussions for her colleagues. Supporters (family carers) for people with dementia gently engaged experts by experience in discussion so that everyone’s voices could be heard. It was also great to see that some of the Maltese representatives set up their own single language group to tackle local challenges.
Here is a video capturing the buzz of our session!
By the end of the session, people fed back their thoughts and learning from their brief moments of seeing the world from Kate’s perspective. Afterwards participants talked about how powerful the perspective of people living with dementia had been and how they valued the diversity in the room which led to high quality conversations.
We know that many European strategies are moving towards person-centred care and increased engagement of people living with dementia, and it was clear from the discussions that everyone is at different stages. However, wherever they were from, whatever role they had, they were all coming together with a shared purpose – using scarce resources to create better services – support that they themselves may want to see in the future and ensuring that people remain at the centre of this.
We have so much more to share with you about the learning we have gained through the 23rd Alzheimer Europe conference and hope to do this as a series of blogs, to discuss our learning about person-centred planning, personalisation and co-production in the European world of Dementia.
The last word must go to Helga Rohra, Chairperson of the European Working Group of People with Dementia, who had opened the conference with a powerful reminder to delegates about the importance of hearing the voices of people living with dementia:
“We are the experts. We are the only ones who can tell you what it feels like when pictures of our lives fade when the memory slips away.”
*Making it Real is a set of statements from people who use care and support telling us what they would expect, see and experience if personalisation is real and working well in an organisation.
Whose Shoes?® concept and tools: a multi-perspective approach to transforming health and social care services, putting the person in the centre in order to shape services in a truly holistic way. Inspiring crucial conversations for change:
Whose Shoes?® – Making It Real is fully aligned to the 6 themes and 26 ‘I’ statements of TLAP’s ‘Making It Real’ agenda and aims to support sites to identify and deliver key priorities.