“My father had dementia, and so did my grandmother who brought me up in Bolton, Lancashire. So, when I was diagnosed, that was the worst part. Having seen what dementia does, I knew what to expect. I have dementia with Lewy bodies, a form which gives you night terrors and hallucinations. It’s incredibly hard living with it. You do things you know aren’t right and you don’t know why you’ve done them.
My wife, Elaine, is the most understanding wife in the world. She’s my full-time carer and supports me with all my presentations, talks and conferences. If I had my way (and she let me off the reins!) I’d do something every day. But she knows when I’m doing too much. She’s been a professional carer for 30 years – she’s the girl who saw the early signs in me.
Elaine has also played a huge part in all my campaigning. I’ve got a passion for it, I truly believe we can improve the lives of people with dementia. There’s so much stigma that goes with dementia. When I decided to tell people, I lost 75 per cent of my friends. I’m frightened of dementia, of course, but am I ashamed of it? Am I heck! You wouldn’t be ashamed of cancer.
The campaigning came about because one day, in a local supermarket, a staff member laughed in my face when I told him I had dementia and asked him to slow down on the till. I wrote 'A Guide to Understanding Dementia' for shops and businesses. The guide helps staff recognise the problems some people with dementia have. When all staff members have read it a business can display a distinctive purple badge stating that they are ‘dementia aware’. Earlier this year Prime Minister David Cameron asked me to support the national Dementia Action Alliance to create dementia friendly communities across the country. I'd already set up the Torbay Dementia Action Alliance and I’m aiming for Torbay to be the first dementia friendly community in UK, if not the world. So far we have 133 local businesses on board.
I also set up Dementia Awareness Day (DAD) so that everyone with this awful condition can come together and raise money – in 2012 it’s in aid of the Lewy Body Society. This is our second year and we’re releasing balloons all over the world at 3pm on 15 September. In the run up to DAD we have the Planting Memories campaign, when the green-fingered members of our community grow and sell plants to raise money. A couple of local care homes have taken it a step further and are creating sensory gardens they're calling Planting Memories Gardens. These will be open to the community as well as being special places for people with dementia, their families and carers. People who’ve lost family members or friends can also grow plants in their memory.
My campaigning certainly keeps me busy and my mind active – it helps me immensely. Elaine says it keeps me out of trouble! What I say on my blog, and in person, comes straight from the heart. I want to make an impact so that everyone in the community is aware of what it’s like to have dementia. I want people with dementia to be respected and supported when they are customers – whether that’s at the supermarket, post office, taxi rank or dentist. So they feel happier to venture out and live as normal a life as possible.”
You can support DAD (Dementia Awareness Day) by giving online to DAD or visiting the DAD Facebook page.