Cutting through the clamour

As dawn broke this morning, I listened to the latest Movers and Shakers podcast.  

Have you heard of it?  

A group of six friends – former broadcasters Rory-Cellan Jones, Mark Mardell and Jeremy Paxman, writer, producer and actor Paul Mayhew-Archer with former judge Sir Nicholas Mostyn and Gillian Lacey-Solymar (defies description - entrepreneur, lecturer, broadcaster) meet in a Notting Hill pub to talk about their experience of living with Parkinson’s disease and eat a scotch egg or two. No holds barred. 

Why mention the podcast? Those of us who work with and for people affected by young onset dementia are constantly seeking ways to be heard. We are forever trying to clear a way through the noise to land the specifics of what is needed for a life worth living with young onset dementia. So why not learn from others, especially when there are so many parallels in the conditions? 

I am impressed by the way the Movers and Shakers successfully attract attention to their cause. They deploy their excellent expertise as communicators to cut through to politicians (wannabe Secretary of Health and Social Care Victoria Atkins and Wes Streeting were recent ‘grilled guests’), to decision-makers and to prominent people from all walks of life. They seem to be listened to, their messages about what is needed seem to be heard. As Mark Mardell blogs ‘Our Parky Charter seems to be raging success’. How encouraging is that! 

Their Parky Charter is, to my mind, utterly reasonable – speedy access to specialists for diagnosis and follow up, essential information immediately on diagnosis, a Parkinson’s passport which acknowledges that the condition is incurable and degenerative so gives automatic right to certain benefits; comprehensive, multi-disciplinary, holistic care and a commitment to funding research for a cure. This could be a template for a Young Onset Dementia Charter. 

They know they are at ‘the beginning of a long, hard slog’. This I definitely recognise, and so would many colleagues and activists who want better lives for those with young onset dementia. Determination is a prerequisite. Now though, young onset dementia ‘musts’ premiere in a transformative manifesto for the new national government from the Dementia Coalition of Dementia UK (our host), Alzheimer’s Research UK, Alzheimer Scotland, Alzheimer Society and the UK Dementia Research Institute.  

Then locally, the Young Dementia Network and Dementia UK are working collaboratively with young onset experts (personal and professional) to communicate that the need for a dedicated pathway and provision is profound. Of course, the reality of living with dementia for people in their 30s, 40s to 60s is dramatically different that of people in their 80s and 90s.  

And today the Network is searching for that breakthrough creative piece that makes the public stop and take note of young onset dementia - of its existence and its impact.  

My perception, encouraged by others too, is that young onset dementia is gradually becoming more visible. And positive changes will come from that over time. But, and it’s a big but, it is still a minority compared to late onset dementia, it is still complex to campaign for as a ‘group’. Just think of the multiple and rare types of dementia experienced by the younger person, think of the different needs of the 30-year-old compared to the 60-year-old, and think of the clamour of demands from all of us on limited resources.   

And then breathe.  

The Movers and Shakers have kept their ‘asks’ simple, they have asked effectively, and they have asked with the authentic voice of personal experience. They, their supporters and the Parkinson organisations are in it for the long haul.  

And so are we.   

Tessa Gutteridge 

Chair Young Dementia Network  

Programme Director for Young Onset Dementia, Dementia UK 

Find out more about the Young Dementia Network: youngdementianetwork.org