UK Dementia Awareness Day

Campaigners living with dementia are taking the chance to speak out about their experiences at major international conferences and using social media.

September is a good time to think about dementia – not only is it World Alzheimer's Month, but 21 September is World Alzheimer's Day and today is the first UK Dementia Awareness Day (DAD). The latter is being promoted by Norms McNamara, a man from Torquay who is in his fifties and has a diagnosis of dementia. Norms is committed to raising awareness of the realities of living with this condition.

Although it's not long since my previous blog on 'Dementia and our society', these three related occasions offer me a triple opportunity to develop some of those thoughts a little further…

As a non-expert, one of the things that has really helped me to understand the diversity of people’s experiences of dementia has been hearing them speak about it directly in their own words. The opportunity for us to do this has grown hugely in the past few years – before that, it was largely assumed that people with dementia (or indeed learning difficulties, mental health problems or any other cognitive or communication impairment) had nothing sensible, coherent or useful to say, and that others (care staff, doctors, family members, charities) could speak much more effectively on their behalf.

All that has started to change. Norms is just one of a growing number - including Richard Taylor and Peter Ashley, Agnes Houston and James McKillop of the Scottish Dementia Working Group, Terry Pratchett, and many others – who are now not only presenting at major international conferences, but also using new social media (blogs, YouTube, etc.) to convey their experiences and views directly. It may take a bit longer for us to hear more voices of those in the later stages of dementia, and of those who are much older and possibly made frail by a whole combination of conditions – but I believe this too will come in time. We do need to work hard on exploring and developing a whole range of ways of communicating and hearing – even low-tech tools such as Talking Mats can make a real difference.

Hearing the direct voices of people who live with dementia has made me think much harder about the language we all use to describe those in that situation. We speak and think so quickly, that it’s easy to use default terms – to label people as patients, care receivers, service users, residents, dementia sufferers and victims. But each term has its own connotations and conveys a specific and very partial role which can easily prevent us from seeing the wholeness of the person we are describing and, hopefully, wanting to understand.

Personally, I don't like to use the term 'dementia sufferer' – not because I think that the condition doesn’t cause much hardship for all affected (it most certainly does!) – but because, to me, the word ‘sufferer’ conveys an immediate sense of passivity and victimhood, and an assumption that little can be done to make the best of the situation. People like Richard, Agnes, Peter, James, Norms and Terry are all experiencing their own dementia in their own way (and they choose their own terms to describe themselves and their condition). But by speaking up they are all showing us that they are not victims, that they each have an active, unique and extremely important role to play, and that they are determined to make the most of life, whatever it throws at them. That's what I'll be thinking about today.

People can sign up to Dementia Awareness Day (DAD) at: causes.com/causes/564203-help-set-up-a-uk-dementia-awareness-day

[This blog first appeared on the Guardian's blog, © Guardian News and Media Limited 2011]