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TX: 19.08.04 - ONE COUPLE'S UNUSUAL APPROACH TO ALZHEIMERS DISEASE

PRESENTER: LIZ BARCLAY
BARCLAY

Dementia currently affects over three quarters of a million people in the UK and the numbers are steadily increasing. Over half of those have Alzheimer 's Disease. It's predicted that the number of Alzheimer 's cases will double over the next 30 to 50 years. When the disease is diagnosed friends and family are usually devastated by the news but Ray Smith and his wife Grace didn't view it as the end of the world, more the beginning of a new one. Grace developed Alzheimer 's in her 50s but instead of staying at home and waiting for her symptoms to get worse the couple decided to investigate alternative treatments and see the world. Ray has written a book about their experiences, it's called Amazing Grace - Enjoying Alzheimer's . He told me how he first became aware that there was something wrong with his wife.

 
SMITH

I noticed she couldn't sew a button on and I could see it was difficult. And there was little memory things - putting odd things in funny places, maybe a purse in the freezer or something you know. Sometimes if I went walking with her she would ramble off. But the point is we're both trained nurses, we actually met at a London hospital, so we've both been involved with dementia cases. So I recognised straightaway that there was some problem. And the answer was to take her to the Princeton BioCenter in New Jersey .
 

BARCLAY

What made you do that? 


SMITH

Well a few years previously my son, Christopher , had developed schizophrenia and a lady in the Schizophrenia Fellowship said take him to the nutrition associates of York . We did that and there was a dramatic improvement in his behaviour - he started swimming and playing tennis - and he was doing wonderfully well for quite a time. I think there's a big need for psychiatrists and doctors to be re-educated in other forms of medicine, especially nutritional medicine.
 

BARCLAY

So you took then that line with Grace, you thought that would be the best form of treatment? 

 
SMITH

Yeah, yes. 

 
BARCLAY

And you went to? 

 
SMITH

Princeton Brain BioCenter in New Jersey , USA . I regard it as the world centre for nutritional medicine. And she was given a prescription of large doses of vitamins and minerals which allowed us to eliminate the problems of Alzheimer 's - aggression, challenging behaviour and agitation. And by giving these large doses you can completely eliminate the problems.

 
BARCLAY

So what are the side effects of taking vitamins in such large quantities - I mean we're told that we shouldn't take large quantities, especially a cocktail? 


SMITH

I've never heard of anybody dying from a vitamin pill. If you've got a disease what do you look for? And it's signs and symptoms. Well if you can eliminate the signs and symptoms, as I say - aggressiveness, challenging behaviour and agitation - eliminate those completely carers and sufferer s have a good life, as we did, which allowed us to lead a completely normal, married life and travel the world and it was really wonderful.
 

BARCLAY

So where did you travel to then? 

 
SMITH

We did Central and South America , the Galapagos Islands, Machu Picchu , India and China and of course part of Europe - we spent a lot of time in Florence and Rome . We did a very large amount of the world. 

BARCLAY

It was quite a brave decision though to go away knowing that Grace did have that condition that could deteriorate and you were away from sources of medical help.
 

SMITH

Well really most of the time she was very calm, if I thought there was a problem I just increased the supplements. Once at an airport a flight was delayed a few hours and she became agitated and they wouldn't allow us on board. But we went back next day with no problem. I mean this is only one occasion that the airlines have ever refused to take her on. On occasions she was a bit noisy during the night, other people complained and they put us out but really there were very few instances of this.
 

BARCLAY

What about the people you met along the way - how did they react to Grace?

 
SMITH

Well they were very - very sympathetic and kind. Everyone was very friendly, especially the youngsters, probably because older people feel threatened because they'r e so close to it whereas youngsters they're out to enjoy themselves and so they had such a good effect on Grace. I think she benefited from the stimulation of going to these places and meeting the people, I mean if she had stayed at home she would have seen ha r dly anybody.

 

BARCLAY

How much of a memor y do you think Grace had of your trips?

 

SMITH

I don't think she had any memory. It was just living for the moment, that's what it was.

 

BARCLAY

When did you finally give up your travels then?
 

SMITH

Oh about two yea r s befo r e she died. We'd actually sold our house in Jedburgh because I thought well take it to the absolute limit and settle in Peru .

 
BARCLAY

So in the end though Peru - you had to leave Peru did you not?

 
SMITH

It was becoming more difficult, I had to get two o r three people to help her in to taxis and I got a wheelchair and it fell to pieces and then the cost of our supplements really doubled by the time we had to pay customs on them, so we r eally took it to the limit. I am very sorr y we had to give it up but I really needed help, I just couldn't cope by myself. I mean she could have gone to respite care, I mean I think maybe I should have done mo r e of that, giving her a  rest and me a r est. But not that much. I enjoyed being with he r and she was enjoying being with me.

 

BARCLAY

Ray Smith.

 

I asked Clive Ballard, director of research at the Alzheimer 's Society what he thinks of Ray's stor y. 


BALLARD

I think it's a very unique story and I think what it shows is that there's many different ways of dealing with a condition like Alzheimer 's Disease and not every way works for every person but obviously this worked very well for Ray and Grace.
 

BARCLAY

And what about that point that Grace probably benefited from the stimulation of the travels and meeting people of the new experiences? 

 
BALLARD

Well I think when people have cognitive impairment, such as occurs in Alzheimer's Disease, sometimes stimulation of that kind can be very helpful, can enlighten people, can help them be more aware of their surroundings. But I think sometimes different environments can be quite frightening and disorientating as well and people can become more confused. So I think I certainly wouldn't advocate people staying at home and I think travelling can be a very good thing but I think common sense would suggest that a safety net is also necessary - that people would need proper insurance in place and also some sort of backup plan if things don't go as well as anticipated. 

 
BARCLAY

And what about the support network - it must be difficult to end up in somewhere like Peru where perhaps you don't have those support networks that you would have here? 

 
BALLARD

No absolutely and I think you can't always rely on things going as well as you could possibly anticipate, so either it might involve perhaps taking a larger group of family members so that there's other people to support someone in a situation or perhaps visit family in another country or something where there is a little bit of a protection network if problems should arise. 

 
BARCLAY

Now Ray and Grace opted to go to the United States for diagnosis and for alternative treatment - vitamins, nutritional therapy - what evidence is there that this can help the treatment of Alzheimer 's? 
 
BALLARD

There's two types of evidence. One is really r elating to the prevention of Alzheimer 's, the other to the treatment. I'll start with the prevention because there's actually more evidence of that. And from a lot of large surveys in the community it does seem that people who have diets that include more vitamins, particularly so-called antioxidant vitamins, like vitamin C and vitamin E, do seem to be at slightly lower risk of Alzheimer 's Disease. In fact there's one very large placebo controlled trial with vitamin A that was completed r ecently that was a 20 yea r follow up study which did again show a slight reduction in rates of Alzheimer 's Disease in people who were taking vitamin A.  So I think long term use of vitamins at sensible doses and an enriched diet, which has plenty of vitamins in it, can certainly be very helpful. If you take people who already have Alzheimer 's Disease there's relatively little evidence, there was one clinical trial with vitamin E which did show significant benefit in people who already had Alzheimer's Disease and there are other ongoing trials with other things like vitamin B12 and folate and vitamin C but at the moment there's no conclusive evidence. 

 
BARCLAY

Ray was quite adamant that the vitamins were eliminating the signs - the agitation, the aggression - that can go along with Alzheimer 's - is that the case?

 
BALLARD

I think it's extremely unlikely that it will have a short term effect on behavioural symptoms, such as agitation. Ray commented in his inte r view that when G r ace was becoming a little bit more agitated he increased the dose of the vitamins - I think it's very unlikely that a dose inc r ease of that kind would have any short term benefits. We know these symptoms wax and wan quite a lot and it might have been more to do with the time they were at in their travels - for example, if they'd had a particularly stressful day of travelling that might have made her feel more restless and agitated, if they had a relaxing day doing something else that might well have helped her feel more relaxed. I suspect it's much more to do with that than the doses of vitamins that she was taking. 

 
BARCLAY

There maybe people listening who think well it's worth a try, what would you say - I mean we have read new evidence that people who have mentally demanding jobs are less likely to develop Alzheimer 's later in life and perhaps the symptoms will be less severe - what would you advocate? 

BALLARD

Well I certainly think that there's increasing evidence that people can control their risk of developing Alzheimer 's Disease to some extent, part of that is having a diet that's r ich in vitamins, part of it's looking after the heart because I think there's more and more evidence that having a healthy heart also promotes a healthy brain. There's a little bit of evidence, as you allude to, that perhaps keeping the brain active, having high levels of education and maybe in this recent study having jobs that are more mentally demanding might have a slight benefit as well. But I think the bottom line really, if you put all these things together , it's common sense - it's a healthy lifestyle, with a good diet, with exercise and keeping your mind alert. And I think if people do that they are likely to slightly reduce their risk of developing Alzheimer's.

 

BARLCAY

Clive Ballard from the Alzheimer's Society. 

  

 



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