Living with dementia magazine December 2010/January 2011

Christopher Devas and Ann Johnson both have Alzheimer's disease and gave presentations about life with dementia at the UK Dementia Congress in Bournemouth in November. Here are extracts from their speeches

Ann Johnson

I was diagnosed with Alzheimer's disease five years ago when I was 52. I am now 57. This is not a nice disease to have. A big problem I have is short term memory, but there are other things tied up with it.

Taking my medication, Aricept, means everything to me. When I started taking it I became alert again. Before that, it was like living in a mist and a fog all the time.

My specific problems are a little difficult to explain because you can't see them. I have great difficulty remembering things, working things out and interpreting things. I use a dictaphone which helps considerably. I can't use a normal watch so I've gone digital, but that has its limitations. I can't read very well so I use audio books. I can't count money, but I haven't found a way around that yet so any suggestions will be gratefully received!

So, I've developed strategies to help. These can be very simple but effective if they work. Often it is the simplest things that get the better of us - things we have done all our lives without a problem. But now, because we can't do them, it is very frustrating.

Frustration itself can lead to problems. It may evoke a change in behaviour which we may be unaware of. When frustration gets to me, I am not a nice person to know, but I would rather be told if my behaviour is unacceptable as I may not be aware.

Sometimes I feel useless and rubbish, and that is when the tears start. The realisation that you are losing your abilities is difficult to come to terms with. I am a trained nurse and was a lecturer in nursing so it is difficult for me when I can see myself disappearing.

Although medication helps to keep things stable, when I see changes happening to me and things getting worse, it is difficult to handle. I often wish I hadn't got insight.

I find myself in a life-changing situation, but I give thanks for the things I can still do rather than moan about what I've lost. I was asked at a talk what keeps me going. I said my friends, my faith and doing talks. Without any one of these I would be sunk.

Christopher Devas

Pictured right (courtesy of Daily Echo, Bournemouth)

I am 66 years old and was diagnosed with Alzheimer's disease two years ago.  I prefer to call my dementia 'Altz.' She has come to live with me without asking!

Prior to 2008 I didn't realise that Alzheimer's disease was invading my life. At the time I wasn't sure what was wrong. I wasn't quite on top of things at work or at home. My doctor referred me to a specialist. I was diagnosed and prescribed Aricept which has, I think, kept me on a plateau, although I don't know where I would now be without the pills. It was very reassuring to know that I was being helped.

Early diagnosis is the key. I told my friends and family that I had Alzheimer's disease, so they wouldn't be embarrassed if I was struggling to find a word or two.

After my diagnosis, we rang Alzheimer's Society in Dorset and they gave us all the avenues to go down. Through attending the Memory Café, we met the Community Mental Health Team, which is wonderful and a great support.

From then on, it was a matter of finding things that would be useful. Often, an idea or thought would come into my head which I knew I'd forget. I now have a little dictating machine which I take everywhere.

My phone, dictating machine, biro, money, car and door keys now all have a place to 'live' so that when I go out, I know where to find them. I find reciting the alphabet slowly is a good way to find the name you are looking for.

Having a wife who doesn't mind how weird my shopping is or that her drink has been put in the fridge is a great comfort.

I would like to say to other people who have problems with their memory to try not to be afraid to face your Alzheimer's disease, and try not to let it get you down. I find that a positive attitude is essential!

You could try something new. I went to Singing for the Brain and have now joined a choir. They told me at school I couldn't sing. This time I haven't asked anybody!

For the last two years I have been able to help a friend on a part-time basis to deliver parcels, which has been a huge help and good fun.

If you know somebody that you think might have Alzheimer's, please persuade them to go to their GP. It is most important that people have an early diagnosis so they then can move on.

I would like to finish with a quote from the book, Still Alice, by Lisa Genova: 'My yesterdays are disappearing and my tomorrows are uncertain, so what do I live for? I live for each day, I live in the moment.'