‘We talk, we learn from each other, we have common ground’ – a participant living with dementia
Beverley Page-Banks the programme’s development manager explains how far the Live Well with dementia programme has come and how user involvement has influenced its design and development.
What is the programme?
The Live Well with dementia programme was initiated to fill a gap in the Society’s services of a structured, peer group programme that is based on self-management principles for people living with dementia. This was pioneering ground for Alzheimer's Society and a number of areas for development were identified following the significant learning of a pilot of the Live Well with dementia programme delivered in Year one.
The programme, now in its third year of development, is tailored to people in the early stages of dementia and is delivered over seven sessions by two Alzheimer’s Society trained facilitators who co-facilitate.
How does the involvement work?
The Engagement and Participation team are represented on the Project Team to support the ambition to integrate user involvement into all key aspects of this programme in development. In year one this included developing guiding principles from the research we had collected.
Since then, it has been about embedding the importance of user involvement and engagement into the mind-set of the programme itself, having it not as an afterthought but inbuilt in the programme principles and structure. For example, the facilitator training has a specific user involvement segment, where key engagement messages are rooted in the course.
The facilitators are then linked with their regional Engagement and Participation Officer who does not attend the course itself, but keeps the facilitators updated on the latest involvement opportunities in the local area and nationally, should this present itself as appropriate for any individuals.
After each session the facilitators do a piece of conversational evaluation, this feedback is shaped into the guiding principles of the programme which are then fed back in to the programme itself. The programme is being directed by people living with dementia through what they say, experience during the programme and what they share.
Participants have told us that in addition to the knowledge and support they gain from the programme and the peer group situation – they get pleasure in knowing that their feedback is influencing the future developments of the programme itself and therefore they are helping other people living with dementia in the future.
Another participant living with dementia said:
‘It’s been good for me to know that in helping myself I have also been leading the path for others’
Participants are the true pathfinders as their feedback is the key element to the shaping of the programme. Their lived experience is what makes the programme meaningful and powerful and we are working to develop the full potential of this.
And the future?
User involvement is at the heart of the future of the programme. We are now focusing on:
- Learning from the experience of the participants, staff and volunteers who have been part of the pilot and pathfinder study
- Increasing the opportunities that programme participants have to influence its development further
- Potential opportunities for people living with dementia to be involved in supporting the delivery of the programme