Advice

Fighting for change through a local dementia action alliance

My wife Barbara had symptoms of Frontotemporal dementia (FTD) from 1999, and we lived with it for 22 years until she passed away two and a half years ago.

We realised just how much ignorance there was about dementia, how little support there was for carers and people with dementia.

On 9 July 2013 – the date is etched in my memory – we set up the Bristol Dementia Action Alliance (BDAA), aiming to make Bristol the UK’s leading dementia-friendly city.

Politically engaged

The BDAA has a team of five and we work with a range of other charities and organisations. We run workshops, awareness sessions, webinars and events, as well as four memory cafés and carer support groups. It’s a 24/7 job for me.

Although I’ve always had strong opinions about politics and politicians, before the BDAA I’d never campaigned or engaged with politicians.

But dementia has turned me into a campaigner and activist. 

I want to do what I can to engage the people at the top, as they have the power to change things. Although, at the moment, they don’t seem to be doing an awful lot.

Window of opportunity

Darren Jones has been our MP since 2017 and he’s very supportive of what we do in the BDAA. He was appointed as Chief Secretary to the Treasury when Labour came to power in 2024 – a really important position. We saw this as a window of opportunity.

The first thing we did was congratulate him on his new role and to ask for a meeting. He responded, thanked us for reminding him of our work and said he could write on our behalf to Wes Streeting, Secretary of State for Health and Social Care.

We’re waiting for a response but I’m feeling hopeful. We posed a series of questions, including asking if the government is willing to work partnership with the voluntary sector. We have the lived experience, so why not use it?

Do your bit

It’s too late for my wife, but I can make a difference for the next generations.

I get frustrated because change is so slow, but if I give up, what’s going to happen? 

We’ve got to try. Whatever happens, we’ll keep nagging people in power. If you get on their nerves enough, they have to do something.

If you feel strongly about dementia, I’d say it’s important to do your bit, however small it is. If we get enough people shouting about the same issues, maybe those in power will do something.

You might feel nervous, but my advice is to have people around you. Find your crowd, kindred spirits who are as just as passionate as you to help you feel supported.