The diaries helping those living with dementia in Yorkshire

future: Claire Surr, Professor of Dementia Studies at Leeds Beckett University
future: Claire Surr, Professor of Dementia Studies at Leeds Beckett University

A group of people living with dementia have been keeping audio diaries in a bid to help their memory. Catherine Scott reports.

Recording regular audio diaries can improve the confidence of those living with dementia and help to reduce stigma attached to the condition, according to researchers at Leeds Beckett.

The Leeds Beckett team evaluated ‘Dementia Diaries’, a project which documents the day-to-day lives of people living with dementia in a series of audio diaries, with the aim of prompting a richer dialogue about what it is like to live with the condition.

The researchers found that participants and their family members spoke positively about taking part in the project, saying it gave them something constructive to focus on.

Participants also spoke of the importance of the project in allowing them to give their views and helping their voices to be heard. They also felt taking part strengthened family relationships and enabled better support from peers.

The researchers also looked at how the work of Dementia Diaries has influenced media coverage of and public reactions to stories about dementia. They found that when media articles developed from Dementia Diaries content, and which are based on the direct voices and experience of people living with dementia, readers’ online comments showed more understanding and support for the person. Readers were also more likely to accept messages that challenged stigma about dementia.

Dr James Woodall, Reader in Health Promotion at Leeds Beckett, said: “This evaluation has affirmed that the Dementia Diaries project has been successful. Dementia Diaries has made a difference to the lives of the people involved increasing their confidence and strengthening their relationships with family members. We also found that the project has influenced how the media report about dementia and has positively informed a wide public audience about dementia and issues that affect people with the condition.”

Dementia Diaries is delivered by On Our Radar, a small communication rights non-profit comprised of a group of journalists, technologists and charity workers who develop mobile and web-based solutions that enable marginalised and offline communities to share their experiences, with the purpose of informing policy makers, service providers, and the public.

The project is funded by Comic Relief, managed by On Our Radar and delivered in collaboration with Innovations in Dementia and OwnFone. It began in January 2015 as a nine-month pilot and was subsequently extended for a further 12 months until September 1 2016.

As the use of technology often becomes more difficult for those living with dementia, Dementia Diaries uses 3D printed mobile handsets which are customised to be as simple as possible, allowing participants to both record audio diary entries and capture their 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 on the website http://dementiadiaries.org.

Claire Surr, Professor of Dementia Studies at Leeds Beckett, added: “Challenging inaccurate and negative reporting of dementia in the press has been identified as an important step to reducing societal stigma of the condition.

“Our study shows Dementia Diaries is one way of helping to challenge that stigma in a positive way”

Prof Surr is currently leading a study at Leeds Beckett, funded by the Department of Health Policy Research Programme (DH PRP), which will shape the future of education and training around dementia within the NHS through investigating the most effective approaches to training health and social care staff.

She is also leading a £2.4m study evaluating an approach to improving the quality of dementia care in care homes funded by the National Institute for Health Research Health Technology Assessment (NIHR HTA) Programme.

Dr James Woodall is a Reader in Health Promotion at Leeds Beckett University.

Much of James’s research has been with vulnerable and marginalised groups (e.g. prisoners’ families, prisoners, people with visual impairments, homeless populations), aiming to work with research participants in ways that are collaborative and empowering.