Living with dementia magazine November 2010

Carers and people with dementia talk about the difference dementia drugs have made to their lives and share their reactions to the NICE decision

Mick and Shirley Ives, Shropshire

Shirley, who cares for Mick, says,

'Like many people who would have been elated when they heard the decision, we were very emotional because the implications of it are so immense.

'I was thinking about how all those people must feel who haven't been able to access the drugs. To watch your partner go downhill day by day, knowing there's something out there that might help, is heartbreaking.

'When Mick was diagnosed with Alzheimer's the GP said he wouldn't be able to have Aricept because he was in the early stages. We asked around to find out where we could get it from privately, and ended up buying it from Turkey. This carried on for about a year but as we were under financial pressure, in 2008 we changed our GP and ended up getting it prescribed.

'The difference in Mick was amazing. He said it was like a fog had been lifted. He could remember more, he became less depressed and wasn't so agitated. He wanted to go out more and was willing to chat to people - he actually started enjoying life.

'We call them the magic pills because they've made such a huge difference to our lives. Mick's more like his old self and he helps me in turn now as I have asthma and rheumatoid arthritis.'

Heather Roberts, Derby

Heather Roberts, from Derby, has Alzheimer's disease and says that taking Aricept has allowed her to retain her independence.

She says,

'NICE should be ashamed of itself for restricting access to these drugs in the first place because they are the only lifeline that people with dementia have.

'I am delighted it is thinking of reversing the decision. I say power to the people who have fought so hard and made NICE reconsider.

'Aricept has made such a difference to my life and I want it to have the same effect for other people.

'When I first started the drugs I was still having memory tests. In just six months my memory had improved to how it had been two years previously. That is a measure of the difference it has made to me.

'I have still got my driving licence and I am still driving, which enables me to go out on my own. I go shopping on my own and things like that. I would never want to risk coming off Aricept at all.

'Thank heavens NICE is changing its guidelines.'

Grace and Ken Richardson, Beverley

Grace, who has Alzheimer's disease, says,

'I think I was lucky because I worked in the health service. I went straight to the GP and was put onto treatment. This was at a time when NICE was saying the drugs were too expensive but my GP felt it was the right time to prescribe it at the beginning.

'It's difficult to say how I would have been without Aricept but I don't think I've deteriorated while I've been taking it. The psychiatrist is very pleased that I'm as good as I am.'

Ken, Grace's husband, says,

'The GP seems to think it's holding things in check as much as possible and I think that's right. We live in the country and Grace still able to drive as long as we stick to familiar roads. She still cooks and likes gardening. We go away a lot and lead as normal a life as we possibly can.'