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 Saturday is the first UK Dementia Awareness Day (to be known as DAD!). The latter is being promoted by Norrms McNamara, a man from Torquay who is in his 50s and has a diagnosis of dementia.
Norrms is committed to raising awareness of the realities of living with this condition. I wrote recently about Dementia and our society, and these three occasions offer me the opportunity to develop some of those thoughts a little further.
As a non-expert on dementia, one of the things that has really helped me to understand the people's experiences of dementia has been hearing them speak about it, 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. Norrms is just one of a growing number – including Richard Taylor and Peter Ashley, Agnes Houston and James McKillop of the Scottish Dementia Working Group, and Terry Pratchett – 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 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 all 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, victims. But each term has its own connotations and each 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.
People like Richard, Agnes, Peter, James, Norrms 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 this weekend.
• Philippa Hare is a policy and research manager for the Joseph Rowntree Foundation
