Dementia Awareness Week - I am still there

On Our Radar's hand-held device giving a voice to people with dementia

This week is Dementia Awareness Week (15/05/16-21/05/16) and many charities and organizations come together to raise awareness about the condition, tell persons touched by dementia that they don’t have to face it alone and encourage people to remember the person behind the dementia. 

The person is more than the dementia. “Even whilst the 'wall of dementia' is in front of them, they should be held in the same regard, and treated in the same manner as they were, before they had this condition," urges the Alzheimer’s Society. "Even at an advanced stage, people with dementia can sometimes indicate they are aware of those around them; they are still ‘there’. 

 Paul Hitchmough from Liverpool couldn’t agree more. “…Suddenly because you’re diagnosed with this thing called dementia, in some shape of form you become an alien,” he said recounting how an old work colleague recently avoided him at the supermarket. “I really do think it needs to be opened up, this thing.…Just to let people know that you are still the same...” 

Paul’s words are part of the Dementia Diaries, a national project funded by Comic Relief, which brings together people’s diverse experiences of living with dementia as a series of audio diaries. I love this project because it gives a voice directly to people living with dementia.

The Dementia Diaries were launched in January 2015 by On Our Radar, a social enterprise which uses technology to give a voice to marginalized communities. So far, the On Our Radar team has trained 31 people living with dementia across the country to use simple 3D printed mobile phone handsets to record their thoughts and experiences as they occur.  The team then edits and transcribes the diary entries and uploads them onto the Dementia Diaries website, where they can be listened to and shared. 

In their entries, the diarists, who are all part of the Dementia Engagement and Empowerment Project (DEEP), document their daily experiences of living with different forms of dementia.  They talk about their frustrations and joys, what they have lost, what they can still do and what they want people to know.

You can read an entry’s transcript, look at the photo of the diarist and listen to the audio. It is a moving and very powerful.

You can read a story I’ve written about the Dementia Diaries for Positive News here.

And here is short extract from a diary entry by Anne McDonald from Glasgow:

“Why do you call me victim? No one attacked me. Many people live with this condition. We’d rather not have it, but we just get on with it. Language is not difficult…But please remember, this is real life for us. None of you know the shifting sands we walk on daily. None of us know what is ahead. Seize the day and be kind to each other. Thank you.”

If you're worried that you, or someone close to you, might have dementia, call the Alzheimer's Society's National Dementia Helpline on 0300 222 1122 or email helpline@alzheimers.org.uk for advice and support.