Fiona Phillips: A treatment for this most cruel of diseases would mean so much to so many

If you're diagnosed you are told to get on with it - there's this awful misconception that it's just part of old age
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The Independent Online

Alzheimer's is one of the cruellest of killers. It killed my mother. It is killing my father. And I cannot even bear to think if the risk has been passed on to me.

A diagnosis of Alzheimer's is like having a bomb lobbed into your family. It places a terrible burden of helplessness and guilt on carers.

Looking back, my mum's behaviour started to change when she was in her mid to late fifties. She was finally diagnosed at 66 and – after a long, tortuous battle for all of us – died aged 74 in May 2006. A year later my father was diagnosed with Alzheimer's too.

What makes it so difficult for carers when a family member is diagnosed is not being able to tell them that everything will be OK. There's no treatment or operation that can make things better. You can't tell them how long it will last and you wouldn't want to tell them how they might end up.

If you were given the devastating news that you have cancer you would be given a prognosis and then they'd give you the treatment options, which would give you something to grasp on to. With Alzheimer's you are very much left on your own. It's more by luck than design that you get a proper diagnosis and care package. If you receive a diagnosis, you're told to go away and get on with it – there's this awful misconception that it's just part of old age.

My mum was pleading to her GP for a long time and we knew nothing about it. She was suicidal – she had a terrible, terrible time of it. Her frontal lobe had been affected so she had this crushing depression all the time. She cried, she begged for help; it was absolutely terrible to watch. When she finally went into the later stages and didn't know who we were it was actually a relief. I know some people say how awful it is that their loved one doesn't know who they are any more, but to be honest I didn't care about that by then. I was just glad to know she wasn't so distressed.

The terrible thing about Alzheimer's is the way you gradually lose the person even though they're still there. You mourn them over and over again as the disease progresses.

One of the saddest things for me was when my mum lost the ability to speak and I was no longer able to chat to her on the phone. Even when she was talking nonsense, or just crying, at least I still had that contact with her.

I was the main carer; I lived more than 200 miles away in London while they were in Wales; I had a full-on high-profile career; I had to get up at 4am for work; and I had two very young children. I would have my mum on the phone to me in the middle of the night crying. I would spend every weekend driving five hours to see them then five hours back.

I don't know how I coped. I think I was depressed for a long time. I never wanted to go out; I just wanted to curl up in the foetal position and for everyone to go away. All I did was work, look after the children and drive to see my parents.

It must be terrifying to lose your mind and for there to be nothing you can do about it. I can remember going round the local supermarket with my mum, where she'd gone for years, and her bursting into tears because she couldn't remember where things were.

It would be exciting if something like vitamin B really could help. We are not talking about an artificial chemical – this is something that occurs naturally in food.

There's already a link between vitamin B deficiency and depression. My mum was scanned for vitamin deficiency at one stage and she had a history of depression. I am convinced that all these things will turn out to be connected.

Any breakthrough in the treatment of Alzheimer's would be wonderful. Millions of people in Britain have parents, partners and friends with the illness. A treatment would mean so much to so many.

Where is Vitamin B found?

Vitamin B, the substance scientists now believe can reduce the rate of brain shrinkage in elderly people, is found in meat, fish or dairy products, among other food types, although in quantities not thought great enough to produce the effects seen in the recent study.

Of the specific B vitamins used in the study, folate can be found naturally in green vegetables, fruits, dried beans and peas. It is also used in the synthetic substitute folic acid in supplements.

Vitamin B6 is present in fortified cereals, beans, meat, poultry, fish, and certain fruits and vegetables, while the most reliable sources of B12 are believed to be meat, dairy products and eggs. However, a number of artificial supplements of both are sold by chemists.

Fiona Phillips's autobiography 'Before I Forget' is out now