Dementia Diaries is an innovative project that welcomes people living with dementia to record personal entries using a 3D printed mobile handset. In our second collaborative post in the Dementia Diaries series, the diarists share their thoughts on public perception of dementia.
‘I am training my own dementia dog. She accompanies me on most of my speaking engagements. And you can imagine my shock horror when I turned up at a Dementia Awareness event only to be told “you can’t come in here with a dog”. I tried to explain she was in the process of being trained. She was in fact wearing her training coat. But the owners of the building weren’t going to budge. I must say it was the owners of the venue, not the organisers, who gave me grief. Me being me, I went to the top man, to ask why this policy was in place. I got tearful and upset.’
‘If I could pick my favourite people to speak to, it would be to students. All students are like a sponge waiting to soak up knowledge and information. I’ve spoken to student nurses, who can change the way we’re treated in hospitals, to student journalists who can change the way we are perceived in the media, and today I was contacted by a broadcasting media student, who will be able to change the way television portrays people with dementia in the future.
Talking to students, their youthfulness and naivete hide the enormous role they can play on future practices and acceptance of dementia in the future.’
‘I hope that the story serves to give more awareness around the complex issues of living with dementia and the impact it has on one through causing people to be depressed and I guess ultimately – thankfully in a small number of cases – leading to suicide. I think the suicide angle is around keeping control as well, when you feel that your life is beyond your control and that I guess is the ultimate in establishing control. As indeed in the film Still Alice, you know she considered that and she made the plans to end her life at the point where she felt she could.’
‘To be effective our group communicates effectively and well. And it is very inclusive, as in we have people living with dementia and their carers, and they are all welcome to join our committees and groups. Groups meet frequently, including sub-groups who feed into our main groups, and that also includes obviously our carers…
‘All of these activities contribute to reducing stigma, because we are working right across the board with people from different places in society. They are learning from us as much as we are learning from them. That I think is how you do reduce stigma because we are as one when we are working together. ‘
Alzheimer’s Society works in a variety of ways, with numerous organisations, to change people’s perception of dementia, through campaigning, policy making, training and inviting people to openly talk about dementia. Projects like Dementia Diaries help us to unite and tackle dementia head on.
- Dementia Diaries is now a DEEP project – for more information go to www.dementiadiaries.org The project was initially designed and developed by On Our Radar http://www.onourradar.org/
- Sign up the Alzheimer’s Society general e-newsletter to stay in the loop
Top image by Hernan Pinera, used under the Creative Commons license.