“These diaries increase public understanding about dementia”
– by Anne MacDonald
Hi, it’s Anne from Glasgow. Presentation for Europe conference: Living Well with Dementia.
My name is Anne MacDonald I was diagnosed with a rare visual variant of Alzheimer’s in 2014 when I was put in touch with the Scottish Dementia Working group. The Scottish Dementia Working group is an independent campaigning group run by people with dementia. It campaigns to improve services for people with dementia and to identify priority issues that should form the basis of a campaigning and an activities. As a younger person living with this condition, I have a particular interest in campaigning to ensure that the voice of younger people with dementia is heard. Some rare strains of dementia can affect people in their thirties. While perceptions of the conditions continue to be focused on older people.
The project I’m going to talk about is called Dementia Diaries. The Dementia Diaries project has created a communications channel to enable people with dementia to record details about the impact of their condition in their own words. Participants were trained to use an easy to operate handset like this (*shows*). And have been given a unique opportunity to record and share their personal experiences. These diaries increase public understanding about dementia, tackle stigma, with the objective to alter preconceptions and also provide a better understanding of support services needed by people living with dementia. In this way people are able to present an honest non-sensational picture of living with dementia, that is very different from the negative stereotypes that continue to be featured in the mainstream media channels.
Dementia Diaries were featured in the Comic Relief Twitter takeover on the 26th of February 2015. This dedicated link offered participants the opportunity to share the reality of living with the condition and to raise the profile of the issue in the UK and internationally. The Diaries continue to generate interest from media and dementia advocacy groups with the recorded messages providing a valuable real life experience, which can be used to enhance greater understanding and better services for people with dementia. Over thirty people across the UK having contributed to the Dementia Diaries project. This success has meant funding has been secured for another year. I personally will continue to be involved and I’m keen to see some of the shortcomings being tackled and the project enhanced.
Thank you for listening, I would be happy to answer any questions and welcome comments or suggestions.
