Role 2015-2016: Co-creator, Producer, Editor, Writer, Mentor & Co-ordinator. Current: Senior Consultant.

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Dementia Diaries is a UK-wide project that brings together people’s diverse experiences of living with dementia as a series of audio diaries. It serves as a public record and a personal archive that documents the views, reflections and day-to-day lives of people living with dementia, with the aim of prompting dialogue and changing attitudes.

How does the project work?

As the use of technology often becomes more difficult for those living with dementia, this project uses diarists’ own mobile or land-lines. Some people also use our 3D printed mobile handsets, which are customised to be as simple as possible, allowing us to both record audio diary entries and capture thoughts and experiences as they occur.

These handsets are linked to a dedicated voicemail and as soon as a diary entry is recorded, it is automatically sent via the internet to the editorial team at On Our Radar. The team will then listen to it, transcribe it and curate it for publication.

Project timeline: 

The Dementia Diaries initiative was designed by myself and the team at non-profit communications agency On Our Radar (www.onourradar.org). It was launched in January 2015 in partnership with Innovations in Dementia, Ownfone and Comic Relief, and was handed over to Innovations in Dementia in August 2016.

Whilst working on Dementia Diaries, I worked with participants to share their stories of their experiences of diagnosis (the Mirror), unexpected symptoms (Buzzfeed), inspiring stories (Buzzfeed), day-to-day living (BBC) and much more. We co-produced a film for the Guardian with three of the Diarists.

You can find an independent evaluation of the project here. 

June Edition of the New Internationalist – Cover photo: Laurence Ivil

 

 

 

De Correspondent: 

How does a country recover from Ebola? Meet the people rebuilding Sierra Leone

 

This is what Ebola looks like to those who lived through it

 

16 Things You Didn’t Know Happened In Dementia

The world’s media extensively covered the Ebola crisis at its peak, but over time, the epidemic’s impact on communities in West Africa has fallen off the news agenda.

And while millions of donor dollars eventually poured in to help contain and defeat the virus, its after effects – social, cultural and economic – will continue to be felt for years to come.

After Ebola picks up the story where the world left off. A partnership between New Internationalist magazine and media advocates On Our Radar, this multi-platform project reconnects with On Our Radar’s trained network of citizen reporters in Sierra Leone to build a comprehensive picture of the disease’s aftermath.

Phase one offered the ‘story behind the story’. On the After Ebola hub, you can see the germination of the recovery stories that reporters investigated across the country, starting from SMS messages.

These ideas were the building blocks for a web documentary / digital feature Back in Touch, which was published on 27 May. Narrated by citizen journalists, it draws on the experiences of ordinary Sierra Leoneans, offering an intimate window into how communities cope with, and process, an epidemic.

Then the June edition of New Internationalist magazine took a critical look at the humanitarian response and health systems deficit. Ebola is not a new disease – it’s been around since 1976 – so why did over 11,000 West Africans die 2014-16? Did we learn the right lessons from the outbreak, and is Sierra Leone ready, should the virus return?

Tune into the story on Twitter with #AfterEbola.

Full project links and syndicated content can be found here.

Each day during the 2015 advent period, a group of people living with dementia (the dementiadiaries.org network) shared their own personal stories on Alzheimer’s Society’s ‘Dementia Friends’ social media channels.

http://dementiadiaries.org/tag/door-into-dementia

However, this was no ordinary social media campaign – the featured stories were all sent in using custom-built 3D printed reporting phones (as pictured here) by the Dementia Diarists. The simplicity of the phone’s design allows the reporters to send in audio reports directly to a digital hub, where the reports are then edited and shared on Facebook and Twitter. This process allows people with dementia – typically underrepresented in the digital sphere – to have their voices heard and their stories shared online.

The reports, recorded as the reporters go about their daily life, provide a unique and intimate insight into their world.

The reporters shared uplifting stories about living well with dementia – about their passion for art, music, running and campaigning, and how families, friends and communities have been drawn closer together post-diagnosis. They also reported on complications of social isolation, stigma and changing relationships with friends and family, and explore ‘homely’ themes about the individual and unexpected ways that dementia affects their day-to-day lives.