Robert Armour meets participants in an innovative scheme which encourages people living with dementia to tell their stories
Sometimes the words just don’t come,” says Pat. “It’s a frustration – but also a fear. As you get older it gets worse. The worry is you’ll get so bad you just won’t remember your loved ones.”
Pat’s fears are shared by many around the room who have turned up on the second day of an innovative course training people with dementia to be citizen journalists.
Run by the social enterprise Radar, the course aims to encourage people with dementia to tell their stories, recording them on an innovative dictation device which is then uploaded online.
For Ann the art of telling is a boon. “It’s like a living diary,” she says. “It helps you talk. Talk rekindles your memory. It’s a bit of a pressure at first using the device but like everything new once you’ve done it you get a bit of confidence. I’ll get there eventually.”
The stories themselves can take any form. A rant, a fear, a gripe or a concern – the story itself matters little. It’s the process of telling it that gives these people – so often undermined and forgotten by wider society – a voice and their rightful place in society.
Libby Powell, founder of Radar, is a firm believer in giving a voice to those on the margins. The project came about because “those who are most vulnerable are also least likely to have the tools to record or report on their experiences.”
“Our normal work tends to take us overseas,” she said. But I wanted to work more in the UK and more outside London. At the same time Comic Relief launched a five year strategy to promote awareness of dementia so it all slotted together.
“Every single reporter has a different set of challenges and possibilities,” says Powell. “Glasgow is our second training event and everyone who attended the events has managed to use the technology and submit a report. That’s a great achievement.”
The recording device is an integral part of the training. Manufactured by Own Phone, the dictation machine is made by a 3D printer in a simple format for older people to use.
After training, the idea is that the reporters will become confident in using the device – which they hold like a phone – and it will become second nature.
The more people know, the more information they have got about the illness, more barriers are lowered- Agnes Houston, Chair, Scottish Dementia Working Group
All taking part in the training put the device to use the night before. There was some reluctance and a fair bit of fear. But all managed it successfully using it in different ways to record their stories of the day.
“We’re not short on opinions,” laughs Pat. “I’m just trying not to rant too much,” he says. “I’ve to remember it’s not all about ranting – it’s about the good things as well. At least that’s what I’m trying to tell myself.”
Those taking part in the training are all members of the Scottish Dementia Working Group.
They already have an international reputation for their enthusiastic and fearless campaigning.
Chaired by Agnes Houston, the group has been campaigning since 2002 and has done much to promote the issues of dementia onto the political stage.
Houston herself was diagnosed with Alzheimer’s disease in 2006. A manager of a chiropractic practice, since her diagnosis she has begun to develop her creative side, attending an art group, and she keeps fit at the gym and practises meditation.
“It’s another tool to help us raise awareness of dementia, how we deal with it and the challenges we face,” she says.
“The more people know, the more information they have got about the illness, more barriers are lowered.”
Powell agrees. The process of reporting, of creating a daily account of life, is in many ways cathartic.
“It’s an opportunity for these people to document their big frustrations in their day,” she says.
“It’s not about the grandstanding or the big issues. It’s often about their failed taxi journeys, frustrations trying to remember items when shopping.
“These are examples of the challenges people with dementia face every day. Therefore it serves as both an evidence base for making different decisions while it also inspires a generation who may be fearful about dementia.”
It is also a record for the individuals, allowing them to chart their progress and a medium for their own recollection – a living diary.
New innovative approaches to dementia are increasingly being sought in our ageing population. In 2013, there were an estimated 86,000 people with dementia in Scotland.
As a result of longer life expectancy, the number of people with dementia is increasing. Based on current dementia prevalence rates, the number of people with dementia is set to double within the next 25 years.
Keeping a record of daily events has been proven to work in the battle to contain the illness.
James Garrick, a 72 year old former rail worker, was diagnosed with dementia seven years ago. He was encouraged by his local support group – Southside Carer Voices – to keep a diary of each day’s events, no matter how mundane.
It is a process he believes enables him both to recall and to see where his memory is failing.
“You lose whole days, weeks even, of your life through this illness,” he says. “Small things like the grandchildren coming round, going to the doctor, meeting new people are simply forgotten and never recalled.
“So when I look back it can make me remember. Sometimes I do recall but the details get mixed with other events. So keeping a diary keeps me straight. I do it religiously, every day. It exercises the mind.”
Clare Black, one of the founders of Southside Carers Voices, says continual communication and contact remains a key tool in treating dementia.
“I think it is vital people with this debilitating illness are in constant contact with others – that they are part of everyday life,” she says. “You see how it makes people connected – and helps them cope.”
Radar: democrasising reportage
Founded in 2012,Radar is a network of international citizen journalists whose reports have been featured on BBC World Service, The Guardian, Channel 4 News, Sky News, Huffington Post UK and the New Internationalist, as well as on many specialist blogs. Throughout the 2014 Ebola outbreak in Sierra Leone, Radar reporters were commissioned by a host of major international outlets. Previously, Radar has been recognised by EU observation teams for highlighting barriers to access in African elections, worked with reporters in India to uncover instances of modern day slavery, and trained community activists in three African nations to report hidden local issues to their elected representatives. In two years of operation, it has supported over 300 reporters from marginalised communities to share news that has reached an audience in the hundreds of thousands. “We empower people to tell stories affecting them and their communities – to share them with a wider audience in the quest for truth,” says founder Libby Powell.“We are about giving the people without a voice the tools, the ability, to be heard. That can be anywhere in the world, including the UK.”
Coping with dementia: a carer’s view
There’s a logic in mum’s muddled memories,” says Lynsey Bartholomew. She cares for her mother Faith after she was diagnosed with Alzheimer’s disease five years ago and has found that as the illness progressively takes hold, her mother’s thought process has followed an increasingly tangled logic. “You get to know what memories are being fused together – that’s really all that is happening. She might have been watching someone on the TV and then that someone becomes me. But that TV programme may have been two weeks ago. It is not just random thoughts – they all have some kind of significance
It’s not just memory Alzheimer’s affects. It is a brain-wasting illness so mobility and vision also get affected. Before long people living with the illness need full-time care and can’t be left to cope alone.
Faith gets support from a carers group in Edinburgh. After diagnosis she went through a period of depression in which she was resigned to the illness. But meeting with people in similar situations to her own has made her more determined to fight the illness says Lynsey.
“Without support there’s no doubt she wouldn’t be here,” says Lynsey. “Connecting with others and not remaining isolated is crucial in coping with Alzheimer’s.”
Communication remains key. Regular weekly meetings with the support group is something Faith looks forward to. Getting the mind active regularly is an important aspect in coping with the illness with many GPs recommending support groups as part of the therapy.
“It’s obviously not about recovery but slowing its progress,” says Lynsey. “We were always fearful her descent would be rapid.
“We are managing to cope. It’s life changing for everyone involved. This illness takes up everyone’s resources – it bleeds you dry and you can become very, very dejected.
“But we don’t give up. Mum is still mum…she, at times, has trouble recognising us but when she does we get out the photo album and the memories often come back.”
Faith has a routine each week involving the support group, day classes, a twice weekly evening group and regular days out with family.
It’s a strategy which keeps her mind active says Lynsey – and one which makes her happy.
“Despite her problems, mum’s happy,” she says. “We’d like things to be different but she now takes it as part of growing old because she knows so many others in the same predicament. She doesn’t think in isolation anymore. She feels part of a community.”