'Life after diagnosis': Dementia Diaries, stigma and the media

"There is life after diagnosis. The label of dementia infers we are demented. We are not. We have a neurological condition which will steal our memory, behaviours, relationships and so much more."

Anne MacDonald, a 56 year-old mother from Glasgow, was diagnosed with a rare form of dementia last June.

She had first noticed some subtle symptoms five years previously and, like the author Terry Pratchett, who called the same condition an "embuggerance" while continuing to churn out books until his death in March, Anne is now determined to kick back against the disease.

Since January she has been reporting her thoughts and experiences through a specially designed, 3D-printed handset, alongside 26 other people who live with dementia and who have been trained as reporters by communications rights organisation On Our Radar.

"We wanted to use technology which is as easy as possible to use," Paul Myles, editorial manager for On Our Radar, told Journalism.co.uk, "so that technological barriers to reporting, storytelling and communicating weren't an issue."

There's a pride in picking up these new skills, adapting to new technologies and actually achieving something new in their livesPaul Myles, On Our Radar

Together with tech firm OwnFone, Radar equipped their trainees with the simple device to send audio reports to the organisation's editorial hub, "almost like leaving an answerphone message".

They have now recorded over 700 clips, some of which have featured on BBC radio and television, giving voice to the issues and members of society which can sometimes be overlooked by the mainstream media.

Anne and three other members of the project were successful in getting the hashtag #dementiadiaries trending when they took over the Red Nose Day Twitter feed in late February, and all the clips are collected in Radar's Dementia Diaries mini site.

For people like Anne, it gives her the chance to not only show there is "life after diagnosis", but go further in raising awareness of a condition that affects more than 800,000 people in the UK.

"We have opened our hearts to the world," she says in another recording. "Please listen and learn from us. With personal factual information we can reduce fear built up by media headlines and sensational reporting.

"My voice could help someone else realise they still have a good quality of life. We all need hope and understanding. Our voices need to be heard, for those coming after us."

Elsewhere, 59 year-old Jo Bennett regularly uses her handset to speak out about media representation of dementia, appearing on BBC radio and television to discuss the issues in more detail.


Jo Bennett's appearance on BBC Breakfast News in February, with husband Don

Radar has been identifying and amplifying the voices of less prominent members of society since 2012, when founder Libby Powell led a team to Sierra Leone to train citizen journalists in reporting the general election using SMS messages.

Since then they have developed their own digital editorial hub to receive text and audio messages directly from devices like the OwnFone or old 'green-screen' phones and distribute the reports to larger news organisations, often around elections in poorer parts of the world.

Politics has been on the agenda in the Dementia Diaries as well, with Keith Oliver, who was diagnosed with Alzheimer's at 55, attending a parliamentary hustings to address issues around dementia.

Keith asked senior parliamentary representatives, including minister for health Jeremy Hunt, about "the need for a care plan which is worthy of its name", he said in his report, "and looked at also the need for linking between social care and health care by way of budgets and finances, which also had come up during the afternoon a number of times.

"So I think we are on the road, but we are certainly nowhere near our destination."

Often people get diagnosed with dementia and people consciously or subconsciously write them off a bitPaul Myles, On Our Radar

Reporting on the provision of services for people living with dementia has formed a core part of the project, detailing diarists' experiences at banks or shops or hospitals, how they were treated and whether the staff had had any training for helping people with dementia.

"A lot of the reporters kind of thought 'oh well, I've been written off'," said Myles. "[They have said] 'Once I had dementia I never thought I'd get the chance to be a new technology user and to be developing my storytelling skills and to be featured in national media and other places'.

"There's a pride in picking up these new skills, adapting to new technologies and actually achieving something new in their lives when often people get diagnosed with dementia and people consciously or subconsciously write them off a bit and be like 'it's downhill from there'."

For some of those involved, the condition has not only changed their perspective but some of their creative output. Painter John Williams has found his style develop and change, while musician Paul Hitchmough feels "more on the edge to write music" since being diagnosed.

All the reports are fed back to various groups like the Dementia Engagement and Empowerment Project (DEEP), a Comic Relief-funded network of local support groups which Myles and other members of the Radar team visited to train the first round of diarists.

Radar began training another round of contributors to the Dementia Diaries project last Friday, and Myles is hoping to work with "broadcasters and documentarians" to compile all the recordings into a "long-term audio archive" that will continue to help foster understanding of a condition too often portrayed as one-dimensional.

"There's a lot about what they can't do anymore," he said, "and they're not denying that, but a lot of their faculties are still there, a lot of their personality traits are still there... the collective experience of having a group to belong to which they are campaigning with and lobbying on issues with a sense of purpose [has been very positive]."

It is true that the various forms of dementia are incurable, like a sped-up version of old age that slowly robs people of themselves, a daily erosion of the person they once were.

But as with the inevitable ageing process itself, the decline is often only as rapid as each individual allows it to be. The members of the Dementia Diaries project are determined to push the conversation around the condition forward and de-stigmatise what is too often portrayed as death by diagnosis.

Dementia diarist Eric Batten, for one, has other plans.

"[One charity said] it is incurable, progressive and terminal," he says in one report. "I should say they have not yet enquired about my will."

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