Dementia Diaries

Funded by Comic Relief

Dementia is becoming one of the most pressing challenges in our society as we try to understand, cure and cope with the condition. Those living with early stage dementia are increasingly finding themselves the topic of conversation - in the press, in health clinics and among families - but many struggle to lead that conversation. Confusion, loss of confidence and audio visual disturbances can make it hard to speak up or harness the tools to be heard. This project introduces a national series of audio diaries that document the day-to-day lives of people living with dementia, using 3D printed mobile phones.

What we did

We looked for a technical solution that would allow those living with dementia to keep a record of their daily thoughts and experiences and share them in real time with our editorial desk. Working with OwnFone, we designed a simplified 3D-printed mobile device that had one central button with the word 'Report'. It was light, kept on a lanyard, and had no market value or person data held on it, making it secure and replaceable. Once pressed, this would take the user through to a voicemail where they would be greeted warmly and encouraged to leave an audio diary entry. Once submitted, this audio clip would arrive on our computer system as an MP3 file, where we could listen to it, clear it from a safeguarding point of view, and then add it to the participant's online profile on a dedicated site - www.dementiadiaries.org. The site was designed for the public but also for those seeking to explore their own diagnosis or support a loved one.

We worked with two partners - Innovations in Dementia and their D.E.E.P network - to run training with 45 people with dementia across the UK who were each keen to join the project, often supported by a family member or volunteer. Each person was given a mobile device and taught to use it to record regular audio diaries. Once active, they received regular mentoring phone calls to help guide and encourage their participation. With the participants' careful consent we produced media packages from the audio and the transcriptions for global press and health providers.

 
 

What we loved

The diversity of the participants and the lives they shared. It was an honour to follow these rich threads of daily experiences - moving, insightful and often humorous. The Diarists were, across the board, incredibly open and the collective story was one of human life challenged and sometimes enriched by a shared condition that affected each person uniquely. We particularly loved the collaboration with Buzzfeed which resulted in two beautiful graphic stories on the site (read them here) and reached out to a young generation watching dementia unfold. We also loved supporting the Diarists to get the word 'dementia' trending nationally on Twitter by doing an audio takeover of the Red Nose Day twitter feed (just knocked off the top spot by Madonna falling down some stairs on the same day....life happens)


What we learnt

We learnt a great deal about life with dementia (did you know there is over 100 different forms of the condition?) but, more interestingly, what life was like for our participants. We listen to their stories about the quiet challenges that might have seemed too small to share but echoed throughout the network as common and painful - struggling to make a simple dinner of beans on toast or tell the time. We also learnt about the power of living well with the condition - doing yoga by a Scottish lake or playing gigs in local pubs - and how it can lift the spirits and defy expectations. We also learnt a huge amount about running collaborative communications project. This was one of our most groundbreaking and ambitious projects and we found our own capacity to support participants was tested in many ways. Working with the Diarists has shaped our subsequent work; we've incorporated lessons about boundaries and managing expectations, but also about the fostering trust and friendship as a basis for understanding. With over 2000 diary entries submitted, there is a world of experience waiting to be explored. We've done our best to create a few clear pathways so please do visit the website and have a listen. The site is now managed by Innovations in Dementia and the DEEP network where it can be nurtured within the dementia community.


http://dementiadiaries.org