Written by Nikki Wilson
One in three people will develop Dementia, 50-500 children are diagnosed with Dementia each year and the youngest case in Essex was only nine years old. It’s a disease, of the brain, of which there are approximately 100 known types, and there’s currently no cure. Statistics like this are hard to ignore and demonstrate that a large percentage of us will be affected by Dementia in some way during our lifetimes.
But the good news is that with some adaptations, it’s perfectly possible to live an active and fulfilled life after a diagnosis. This isn’t only important for the person living with dementia, but their friends and family too. Yet, understandably people can lose confidence after a diagnosis and feel that they may not be able to participate in the things they’ve previously enjoyed.
For me, and I’m sure many of you reading, an active involvement in the cultural life of the community contributes significantly to my wellbeing. It’s something I’d hate to feel I couldn’t be part of if diagnosed with Dementia. This is why Ignite Chelmsford held a “Dementia Friendly Community Events” learning session in partnership with the Alzheimers Society. Aimed at event organisers, the intention was to raise awareness of Dementia, and share ideas of how to plan events to ensure that people impacted by Dementia can continue to feel a part of the city’s cultural life for as long as possible.
The session was led by Mark Neville, Dementia Friendly Communities Coordinator and Pan Essex Dementia Action Alliance Chair, and we were also pleased to welcome Essex’s two other Dementia Friendly Communities Coordinators, Rosalva and Laura. Together they brought a wealth of knowledge both about dementia and initiatives across Essex and beyond, where communities are working together to support people to live well with Dementia.
The session began by introducing us to some five key facts about Dementia, some of which I’ve alluded to above:
- Dementia is not a natural part of aging.
- Dementia is caused by diseases of the brain.
- Dementia is not just about losing your memory.
- People can still live well with Dementia.
- The Alzheimers Society is there to support anyone affected by Dementia and there are 100s or people Essex wide working to improve the lives of people living with Dementia and enable communities to play their role. They meet regularly through 14 Dementia Action Alliances
To help us to understand the impact of Dementia, Mark then shared a fabulous Bookcase analogy. As a lover of reading, this particularly resonated with me, helping to explain how and why Dementia can affect someone’s behaviour in ways that may be difficult to understand from the outside. It also felt particularly relevant to the arts and cultural focus of the group.
We then broke into an interactive session where Mark, Rosalva and Laura shared some tips on things to consider when planning events and we also came up with our own suggestions. There are too many to list here but here are a few that stuck out for me:
- Stating in the invitation and communications that this is a Dementia Friendly event
- Catering well for carers, for example offering reduced ticket prices and designated seating
- Having a prominent, designated “Meeting Place”
- Paying attention to signage and lighting eg having directions both to the toilets and back to the main space
- Encouraging the use of the Herbert Protocol
It was a lively session and certainly gave me plenty to think about. However, my key takeaway was understanding more about the relative resilience of emotional memory. This really highlighted the potential of cultural events within the community to not only contribute positively to the wellbeing of people currently living with dementia, but to create the feelings that everyone attending will retain long into the future, whether or not they are directly impacted by the condition.
So, if you’re organising a community event, how can you ensure that people with dementia, their families and friends, feel confident and welcome to attend and create the feelings of warmth and connection that all of your guests will remember far beyond the details of the event itself? It would be great to hear about how local events are becoming more dementia friendly.
If you weren’t able to join the session but reading this as given you a nudge to find out more, or if you or someone you know is affected by Dementia and needs some support, there’s lots of information about Dementia, and Dementia Friendly Communities on the Alzheimers Society website, and also a dedicated website for Dementia Action Alliances, with a page dedicated to the Chelmsford Dementia Action Alliance.
The Pan Essex Dementia Action Alliance also has a Facebook page, you can follow @EssexDementia on Twitter or get in touch directly with one of the Dementia Friendly Communities Coordinators:
Mark Neville (primarily covering Mid and South Essex) firstname.lastname@example.org
Rosalva Johnston (primarily covering NE and West Essex Rosalva.email@example.com
Laura Cleverley (covering Thurrock) firstname.lastname@example.org