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Designing a citizen science platform for people with dementia

We’re exploring how we can use digital technology to help improve the lives of people with dementia through a new project - Dementia Citizens - that will connect people with dementia and their carers with researchers.

This will give people with dementia and their carers fun activities to enjoy together - such as creating a digital scrapbook of their life - and will give scientists data that they can use to research and improve care.

What do people affected by dementia think of the idea? 

We’ve been sharing our idea with people affected by dementia. Here are a few snippets from what we’ve learnt so far.

Everyone loves Adele

Throw out your preconceptions! During a recent workshop the BBC brought small teams of BBC archive experts, technologists, and dementia experts together with people with dementia (via the Scottish Dementia Working Group). We discussed how media, especially the BBC archive, might help those with dementia. In a discussion about music, many of us assumed that the likes of Frank Sinatra, Billie Holliday and other “golden age” greats would be what people with dementia wanted to listen to. In fact, the music that people wanted was different and diverse - they asked for songs by Adele and obscure 1970’s prog rock bands.

Our assumptions about older people and people with dementia are just that. Time and again they’re proved wrong. As unique as all of us, each person that is living with dementia has their own story. 

Dementia doesn’t stop creative expression 

Vincent is a successful actor and an award-winning narrator, appearing in films such as Superman and The Spy Who Loved Me and on stage at the National Theatre and in the West End. Vincent also has dementia, and he kindly narrated our Dementia Citizens animation, which you can watch on our website, at www.dementiacitizens.org.  

I watched Vincent record the narration, helped by his wife Lorelei, also an actor and narrator. Vincent has trouble recalling any more than a few words at a time, and I still get goosebumps when I think about how hard he and Lorelei worked together to overcome this challenge and make the most of his magnificent voice. Lorelei helped him to achieve this, and they were never satisfied with anything less than his professional best.   

Although people with dementia may struggle with daily tasks, their creative talents can continue to shine.

Carers are experts at designing innovative activities  

Sarah* cares for her mum, Jenny*, who has dementia. Sarah has created a host of activities that they can enjoy together every day: a dvd box set with films from the 1950's that Jenny loves and triggers song, a board of photos arranged in chronological order, a book of poetry and music that Jenny recites or loves to hear. Other carers told us similar stories - they work hard to find activities which trigger memories and conversation and keep the person they care for engaged. 

Although carers are doing this, they told us that it’s hard because there aren’t enough resources for everyday activities. Digital technologies may help fill this gap as they give people activities that they can enjoy together any time any place. 

Our next steps

We’re optimistic and excited about the potential for digital technology to improve the lives of people affected by dementia. We’ll continue to work on this project and share what we learn along the way. If you’re interested to find out more about the Dementia Citizens project and stay up to date visit www.dementiacitizens.org.

*Some names have been changed to protect identities.  

Author

Alli Suddaby

Alli Suddaby

Alli Suddaby

Programme Manager

Alli was the Programme Manager for Dementia Citizens.

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