I often describe my job as ‘working with and alongside people with dementia’. It’s a sort of catch all phrase but in this blog I would like to share an example of exactly what that means in practice partly as a shameless plug of what we can offer, but principally because of the significance of what has been produced by a small group of people living with dementia in the East Riding of Yorkshire and the implications of it.
At Innovations in Dementia we have been working over the last 12 months in the East Riding of Yorkshire on a commission jointly funded by the East Riding of Yorkshire CCG, the East Riding of York Council and the Humber Teaching NHS Foundation Trust. The Commission included the design, development and delivery of an East Riding Good Life With Dementia course.
I met with a group of 3 people living in the East Riding, already diagnosed with dementia and keen to share their experience to help others adjust to living with a recent diagnosis of dementia. After just a few meetings we had the bulk of the new course content and themes.
Having recruited 5 people recently diagnosed across East Riding we delivered the whole Good Life course via zoom over a 6 week period. Our three course designers were the course tutors and they co-facilitated each session. What followed was a range of connections and a feast of shared learning.
The course answered the many questions that people recently diagnosed with dementia had about their diagnosis, about the future, about the implications of it on their lives, relationships, and on their confidence and their rights to continue as valid and valued members of their neighbourhoods and communities.
We knew it would answer the questions people had because it was put together by local people with dementia sharing the key messages they wanted to give to people going through diagnosis, drawing on their own experience having gone through that same local process. Who better to learn from than those who have been there and got the T-shirt!
As a whole group we produced a post diagnostic resource pack specific to East Riding. As well as key important local information and numbers to contact gathered from the course, it contains a powerful ‘manifesto’ of what local people with dementia expect and demand; a list of what was learnt on the course; and an invaluable must-read insight into ‘what my dementia means to me’ from one of our course tutors, Bob. Please do read it here
Local memory services and providers have requested this resource. They realise that, however well-intended, much of the information they currently provide themselves has been created by them for others – essentially a best guess.
This resource, however, has been created by, with and alongside people living with dementia themselves, and has been born of their real experiences.
As well as being invaluable itself as a resource, it is also a clear example of the power and capacity of people with dementia to create together any resource in dementia.
We can’t continue guessing what people might want.
People with dementia hitherto have been an untapped, underused resource. As we emerge from lockdown with huge bottlenecks across dementia services,
- people with dementia can lead on the creation of the whole dementia learning and development strategy in their localities;
- people with dementia can lead on investigating their own research questions;
- people with dementia can help build local dementia strategies;
- people with dementia can shape the development of services that meet their needs, having previously been passive recipients of care originally and primarily designed to provide a break for carers.
I think this is a real ‘moment’ in time (can anyone hear Whitney Houston?). How great that East Riding is at the heart of it! If you want to follow their lead contact Damian@myid.org.uk – that’s the shameless plugging bit!
The Good Life course in East Riding has also led to the creation of a new group of peers with dementia, who are now meeting regularly – the East Riders! Thanks to the forward-thinking collaboration across health, social and third sector providers throughout East Riding, we shall be co-creating more Good Life courses – and consequently more groups of peers who can form a growing network of active, engaged people with dementia across the region.
The possibilities are endless and it starts with just a listening ear to the dementia voices. Listen here to the DementiaVoices!
Damian June 2021