My website and Daily Digest or blog has grown legs, and is now being referred to as a resource for a variety of dementia training organisations or other sites. It is exciting and empowering, and also gratifying it is seen as useful, but with this comes a certain amount of pressure to ‘perform’! Some time ago I was invited to contribute to DementiaCare resource and training network, whose home page very simply says, “Latest Dementia Care information and training”. Last week my site went live on their site, which indicates their respect for what I am writing, and has given me a renewed sense of purpose. It has also created a not insignificant amount of pressure to write.

It is not too stressful as I will keep writing from my heart, and from my own ‘truth’, about my ‘new world’ as it evolves and changes. After all, that is one of the main purposes of it, and to stray from my current style may well change the impact of the blog. As my world slowly disappears, I hope to keep abreast of the changes, and to document the losses and how my family and I cope with them. On my home page, I talk about why I started this site, and although they are still very valid and important reasons, I suspect my main purpose has become to give a voice to people with dementia as this is so often forgotten.

Every day I read blogs written by loving family carers of people with dementia, but most of the time cringe thinking how much I would hate my family to talk about me like that. The term demented is used a lot, which I find offensive and objectionable. I am still a human being, with feelings, diagnosed with a disease that comes under the umbrella term of dementia. If I had cancer, no-one would refer to me as ‘cancered’.

In Australia, there is not one person with dementia on the board of any of the organisations whose Vision statements include phrases like, ‘while valuing and supporting people living with dementia’ or ‘consumer empowerment and advocacy are centre stage’. One state has as part of its Vision, ‘The stigma and social isolation that result from a diagnosis of dementia will not be changed unless the wider community comes to better understand the journey of dementia.’ If people with dementia aren’t asked to contribute at conferences, forums and seminars, how can they possibly think they are reaching that last one!!

My response to that is if organisations with vision statements including those types of phrases don’t start properly including people living with a diagnosis of dementia, then they too are operating from a position of stigmatisation, and they are denying us the very things they state they stand for. I will keep writing for as long as I can, and when I stop, it will be passed over to my dear husband (BUB) to write for me until the end.

People with dementia do have a voice, and it is important to ask them to speak to you, which hopefully will empower them enough to give them the confidence that you will truly listen to their inner experiences. As the Scottish Dementia Working Group says, ‘nothing about us without us’.