‘If we don’t do something, there won’t be a cure for dementia’

Peter Berry from Suffolk is 52-years-old and was diagnosed with Alzheimer’s two years ago. Now he is helping with research by participating in a drugs trial. Christina Macdonald reports

Did you have a family history of Alzheimer’s disease?

My father has it. Saying that, he’s had it for a long while now. Probably 15 years or more and he’s just over 90 now. He is very much like myself. He has a very positive outlook on life. I know there’s probably no medical proof of this but I think that’s what’s kept him going and kept him at a reasonably even keel. We know his mother had it and most of her brothers and sister had it going back a long way.

How did you get diagnosed?

We went to the GP who said I was depressed. But I knew I wasn’t. Then I think it was various cognitive tests and I scored very low on the tests but my wife kept pushing and they still said it wasn’t anything else and just depression. Then eventually we went to a place locally to us. They diagnosed mild cognitive impairment after taking various brain scans.

Was there any anger on your part about being diagnosed so young?

No. Not really angry. I think I was more relieved because I think my wife thought it was brain tumours and various other things. I think even in the back of her mind she probably had an idea of what it was. You think, ‘no it can’t be that’. I think it was more relief to a degree.

Do you think your age made it harder for you to get a diagnosis?

Some of it was my age and I think some of it was because I’m quite articulate. I can talk and I look well and I think some of that gives them a wrong impression. So when I did the cognitive tests I think they thought: ‘he’s having a bad day’.

How do you manage life on a daily basis?

I have a little notebook and I write things down. Little sayings, positive sayings and sometimes, I think: ‘yeah, this is not so bad after all’ and when I forget these things I go to this little notebook and I read through it. I wrote this down a long while ago. I think it was when I first got diagnosed. ‘Alzheimer’s is a bully. Take the fear away and the bully is not so tough. It’s not so bad after all’. That was just one of the things I thought to myself and I wrote down. I often think of that. Without the fear, it’s not quite so bad. Sometimes if I’m on my own, I always put music on that’s lively because then you’re not on your own. One thing at a time. Don’t hurry jobs. Do things that you can do and not things that you can’t.

How did you hear about the trials?

The NHS gave me medication and effectively said: ‘come back when you are a lot worse’. My wife wasn’t happy with that so she went online and registered for some trials. Several people got back to us. Re:Cognition Health got in contact and she thought they sounded the best – they did blood tests and regular scans. It makes me feel better because I feel positive that at least we’re doing something. Even if it might not help me, it’s helping research, which effectively means you’re still doing something positive. We went on the trial. The first session we didn’t know if we were on the drug or the placebo but we were still having regular tests. Now we have gone through the first stage, we still didn’t know whether we were one or the other but we know now that for the next year we are on the actual trial drug itself.

What was your attitude towards the trials?

I thought they were very good. I fit the criteria for lots of trials because of my age and physical fitness. It’s a very positive thing. It does change your whole perspective and outlook on life. And you just think: ‘hey, we’ve got to do something’ and if we don’t do something then in the next 10-15 years there won’t be a cure and medical advances must leap forward. They do a lot for cancer and I think they’re getting on the top of cancer. I know cancer is a terrible thing. There’s no two ways about it. But if you go to hospital and you’re diagnosed with cancer, you come out of that hospital with a piece of paper with another appointment. You go into hospital, you get diagnosed with Alzheimer’s, you come out with nothing. That’s not right.

For more information on Re:Cognition Health’s trials, visit http://www.recognitiontrials.co.uk