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Loud & Clear: Exploring two decades of involvement, voice and activism by people with dementia in Scotland

Loud and Clear’ tells the story of how people living with dementia in Scotland have become activists and influencers in their own right over the last twenty years.  

It’s the first book of its kind, charting the history and telling the story of how people with dementia in Scotland confronted the status quo. The story is told largely through the eyes of dementia activists themselves, and reflects their successes and struggles to achieve ground-breaking change. 

For many years, people with dementia were largely undiagnosed, unseen, unvalued and ignored. With no way to have their voices heard, they were never consulted on policies that affected their daily lives, and were turned away from conferences – on dementia.

Over the last twenty years, this has started to shift, thanks to a group of people in Scotland living with dementia, speaking up and becoming activists themselves. After decades of silencing and discrimination, people with dementia have been joining forces, taking action and campaigning for social change. Their work has changed policy in Scotland and influenced others across the world.

This book tells their story.

One of Scotland’s first activists - also known as the father figure of activists - is James McKillop.  James has had a diagnosis of dementia for two decades.  
He describes why he got involved in having the voice of people with dementia heard: “In the early days, there was nothing for people with dementia, nobody would speak to me or listen. At the beginning, if you had dementia, people wouldn’t ask you the time off your watch.  They just regarded you as completely incapable of anything. People made assumptions - they never asked us anything, so it’s important we are now allowed to speak and this is happening now.  People with dementia are being able to voice their opinions and concerns.”

Pioneering activists from Scotland travelled from Australia to Japan, changing how dementia was perceived and inspiring people to speak out and advocate for themselves. These countries attribute much of their awareness of the importance of involvement to Scotland’s movement.

Read the book here

There is also a short film featuring some of the contributors to the book. Watch the film here.