By Karina Kinsella
Researchers from the Centre for Health Promotion at Leeds Beckett University were asked to evaluate the UK wide Dementia Diaries project that documents the day-to-day lives of people living with dementia. The project provides people living with early onset dementia with a mobile audio handset device to record their daily experiences. These audio blogs are available on the Dementia Diaries website: here
With over 850,000 people estimated to be living with dementia in the UK, this project plays an important role in prioritising the voices and opinions of people living with dementia. It aims to help improve public understanding of dementia, challenge stigma, and highlight issues that are important to people living with the condition.
Over 40 people (diarists) across the UK took part in the project. 11 diarists and five family members were interviewed to find out what impact the project had. The findings of the evaluation were overwhelming positive. Most diarists found the hand-set very easy to use and enjoyed the flexibility of being able to make a recording anywhere at any time, enabling them to contribute at their own pace. People told us that recording diary entries gave them personal satisfaction and something positive to focus upon. Knowing that their recordings were being listened to and helping other people made diarists feel useful and valued. It provided them with a positive role and purpose and enabled them to make a contribution to the dementia community and beyond.
Diarists and their families reported social connectedness and feeling part of a ‘virtual community’. They hoped that their entries could help to reduce the stigma attached to dementia and reported that being involved in the project helped to reduce isolation and encouraged the sharing of ideas and information. Staff from the Dementia Diaries project team were friendly and personable and offered training and support to diarists and their family members. This support was key to the success of the project and to making the diarist feel appreciated and encouraged throughout the process.
Dementia Diaries is a unique way for people with dementia to give their views and help their voices to be heard. The project has been very successful for all those who have been involved and there seems to be a consensus that all people who have early onset dementia could benefit from being involved.
The full Dementia Diaries evaluation report can be found here