Jess Barrow Award for Campaigning and Influencing 2024

A retired radio journalist living with dementia who has campaigned tirelessly to raise awareness of the disease has won Age Scotland’s national award for campaigning and influencing.

Willy Gilder, who lives in Edinburgh, works hard to overcome the stigma against people living with dementia and vigorously supports those facing the daily challenges associated with a dementia diagnosis.

Among his personal victories are having his driving licence reinstated following his diagnosis and becoming a member of the Scottish Government lived experience panel which helped to develop the National Dementia Strategy for Scotland.

He has also campaigned to challenge the narratives used in some public portrayals of people living with dementia, by taking to X (formerly Twitter) to start a conversation and gather support.

Willy was diagnosed shortly after moving to Scotland during Covid lockdown and had no-one to speak to. This period of isolation prompted him to share his experiences online and led to him founding STAND, a peer support group for people living with dementia in Fife. He later become a member of Age Scotland’s About Dementia.

Since his diagnosis, he has become a passionate advocate for those living with dementia. He has organised a webinar attended by more than 50 people to discuss how to overcome stigma against people living with the illness and has submitted his work to the Alzheimer Europe Conference in Switzerland where he was selected to give a presentation to delegates.

He continues to speak up for the lived experience of people diagnosed with dementia, epitomising what it means to live well with dementia and be a dementia activist. He is also a talented artist and active user of social media.

Colleagues describe Willy as a ‘true inspiration and worthy recipient of this award’.

Willy Gilder said:

“It’s very humbling to receive this award. Shortly after being diagnosed with Alzheimer’s disease I was determined to get involved with trying to improve services for people with brain disease, and to do whatever I could to fight the stigma that sadly still surrounds dementia.

“To my astonishment this has taken me around the world, to conferences in Poland and Switzerland and on an extraordinary dementia friendly version of the Camino pilgrimage in Spain. I find myself in zoom calls with all kinds of folk, and sharing platforms with academics and clinicians. All the time I’m trying to say the same thing: ‘nothing for us without us’.

“People living with the early stages of neurodegenerative brain disease have so much to offer. We have a lifetime’s experience in all kinds of fields. Scotland, I’m pleased to say, recognises this and is leading the world in involving people with ‘lived experience’. It’s nice to feel I play some part in that.”

Katherine Crawford, chief executive officer at Age Scotland, said:

“Willy’s tireless energy for working to improve the daily lives of people living with dementia across Scotland is an inspiration.

“Since his own diagnosis, Willy has become a passionate advocate for people living with dementia, supporting them to overcome stigma and raising awareness of the disease both here in Scotland and overseas.

“His drive and determination helped shape the Scottish Government’s dementia strategy. He is a shining example of what it means to live well with dementia and his work inspires others to do the same.

“It is a true honour to present Willy with the Jess Barrow Award for Campaigning and Influencing and to thank him for all that he does for people living with dementia.”