Amplifying the voices of people with dementia

Paul Myles at On The Radar tells us how they are giving people living with dementia a voice with the Dementia Diaries project.

This wasn’t a typical social media campaign, or a typical advent calendar for that matter. In December 2015 we teamed up with Dementia Friends to bring you Door Into Dementia, a digital advent calendar featuring 24 stories from our Dementia Diaries project. Each day throughout the advent period, we featured stories from our Dementia Diarists who opened a door into their worlds and gave us a unique insight into day-to-day life for people living with the condition.

The stories were all recorded and sent in by people living with dementia from around the UK using custom-built 3D-printed reporting phones (pictured above). This process allowed people with dementia – typically underrepresented in the digital sphere – to have their voices heard and their stories shared online. Many of the stories are great examples of how there is more to a person than their dementia and that it is possible to live well with dementia, which are two of the key messages of Dementia Friends.

“I feel it’s very important that people who have been diagnosed have a voice that’s heard and a voice that’s strong” Dementia Diarist, Paul Hitchmough, 62. Living with dementia

What is dementia diaries?

Dementia Diaries is a national project, bringing together people’s diverse experiences of living with dementia as a series of audio diaries. It is both a public record and a personal archive that documents the day-to-day lives of people living with dementia, with the aim of prompting a richer dialogue about the varied forms of the condition. It aims to improve the public’s understanding of dementia, as well as being used to improve services and policies that affect people with dementia.

“We need to get the message out that there is life after diagnosis” – Anne MacDonald, Glasgow – living with dementia since 2014

Last year, the Dementia Diarists have sent in over 1500 reports, which have been featured by media organisations such as BBC World Service, Sky News and Buzzfeed.

They also led a ‘Twitter takeover’, during which their stories were featured on Comic Relief’s Red Nose Day feeds throughout the day. The hashtag #DementiaDiaries trended nationally on Twitter.

The reports are also packaged up for organisations and businesses in order to improve their services. They’ve been used to provide insights for the telecomms industry about how to deal with people with dementia over the phone, for NHS public engagement and education projects, and to improve the way the media industry reports on dementia.

“Those of us with dementia are experts in our own conditions and have invaluable information to share” – Anne MacDonald

The Dementia Diarists have a unique range of insights about what it’s like to live with dementia – whether you’re an individual, a business or an organisation that would like to ask the Diarists a question, please get in touch here.

2 thoughts on “Amplifying the voices of people with dementia

  1. Becky

    Hi
    Please can u tell me where there is a chat room for people with dementure
    Other than altzimers one that one doesn’t get used.
    I really need somewhere I can talk and be myself
    Good blog by the way
    Becky x

    1. Dementia Friends Post author

      Hi Becky,

      Thanks for your message. When you say other than the Alzheimer’s one, are you referring to Talking Point? http://forum.alzheimers.org.uk/

      Talking Point is a very active community with a lot of discussion. Perhaps it would be what you are looking for?

      Otherwise I’m afraid I don’t know of any other chat rooms for people affected by dementia. For more support and advice, you could try calling the Alzheimer’s Society National Dementia Helpline 0300 222 1122. They can provide information, support, guidance and signposting to other appropriate organisations.

      Best wishes, Dementia Friends.

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