National Dementia Action Alliance Conference 2020

Last week I attended the National Dementia Action Alliance conference in London. The theme was all around co-production, and the day really emphasised the importance of and need for co-production if we are to deliver the best, person-centred care for people living with dementia.

Jeremy Hughes, Chief Executive Officer, Alzheimer’s Society quoted co-production as:

“a relationship where professionals and citizens share power to plan and deliver support together, recognising that both have vital contributions to make in order to improve quality of life for people and communities.”

Raising the question, what does good quality of life look like and how can we work together (healthcare professionals and those with lived experience of dementia) to ensure that good quality care is available for everyone affected by dementia? Sharing power equally, as Jeremy Hughes put it, is fundamental to this happening.

We heard from inspirational speakers, both professionals, carers and people living with dementia, and it was fascinating to hear about the pioneering work happening right now. From an academic point of view I was intrigued to hear about the Alzheimer’s Societies Dementia Experience toolkit to help people find out how to measure the experience of people living with dementia.

https://www.alzheimers.org.uk/dementia-professionals/dementia-experience-toolkit

This was created with academics and people with lived experience of dementia, a true example of co-production. There is much work happening around including people living with dementia in research, not only as participants but as collaborators in the design of research projects.

We also heard about organisations such as Tide, who empower carers by sharing their stories to create change, as well as working groups such as the 3 Nations Dementia Working Group, which brings together professionals, carers and people living with dementia to make a difference to dementia care.

Over the past 10 years of working in dementia care I have often felt that there is a vast array of services, organisations, individuals all working to improve the lives of people living with dementia, but often never consulting with people with lived experiences of dementia and never sharing their own experiences around delivering their work. The conference certainly showed that we’ve come along way, whilst the services may still currently be disjointed, the dots are definitely coming together, and this makes it an exciting time to be a part of dementia care. We can make a difference if we work together.

We were asked to make a pledge to improving co-production alongside people with lived experience of dementia. My pledge was that:

Musica Music and Wellbeing CIC will create an advisory board made up of people living with dementia, their carers and family.

I left the NDAA conference feeling inspired and empowered to collaborate with others, to work together to improve the lives of people living with dementia. Rachel Thompson in her closing remarks said that she hoped we would go away and do things differently and better. I think there was a resounding agreement that co-production is the way forward for all of us, together we’re stronger.