I’ve got a copy of the terrifying ‘dementia gene’ – I’ve taken 5 steps to reduce my risk and you can too

IT’S over 20 years since I discovered I have the gene, APOE4, which has been linked to a raised risk of developing Alzheimer’s.

Nearly a million people now have the disease in the UK and the number continues to rise – an estimated six million by 2050. 

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Jerome Burne has the APOE4 gene, which is linked to an increased risk of Alzheimer’sCredit: Jerome Burne

Getting the news back then was scary. There was no drug and nothing you could do to reduce the risk of what was clearly a horrible disease.

But being a medical and health journalist, I felt that if the situation did change, I could find out about it.

Now that I had skin in the game, I became very interested in Alzheimer’s. 

Millions of pounds were being spent to develop a drug, but what interested me more over the next few years were reports of changes in diet and lifestyle that seemed to make a difference.

They were odd, random things with little sense of why on earth they would work.

But they turned out to be signposts to a much more hopeful future.

A doctor in Florida wrote about how giving coconut oil to her increasingly-demented husband produced a definite improvement.

“I could tell he was getting better,” she said, “because he started doing housework.”

Researchers at Minnesota University monitored several hundred nuns for years and found those who played mentally-challenging board games were less likely to develop thinking and memory problems. 

But surely coconut oil in your breakfast porridge and a few rounds of Scrabble before bed weren’t going to prevent brain cells from dying off?

The Jennings vs Alzheimer’s- Meet the family diagnosed with early-onset dementia in BBC2 documentary

Well, there is growing evidence that what we eat and how we spend our time has a major effect on the health of our brains. 

Billions of pounds have been spent on pharmaceuticals that clear the deposits and tangles of sticky plaque found in the brains of sufferers and thought to be a cause of the disease.

The results have been mixed, barely moving the dial on the rate of brain cell death in sufferers. 

Because of that, many researchers are now turning their attention to other ways we can keep our bodies healthy.

Our brains are not isolated in a bony box, but have a two-way connection with almost all the systems at work in our bodies. 

The main areas include the cardiovascular system, your metabolism (how energy is used), the immune system, the vast colony of bacteria and other microbes (the microbiome) in your gut, and the processes involved in rest and repair.

The very good news is that you can start making changes to all of them with diet and lifestyle today.

I’ve been exploring this radical new approach with the help of my nutritionist friend and co-author Patrick Holford, who runs a charity called foodforthebrain.org.

What is the APOE4 gene?

Most cases of Alzheimer’s disease – the most common cause of dementia – are due to a complex mixture of factors.

This includes age, lifestyle and environment – and genes.

Research shows two different types of genes involved in Alzheimer’s – faulty genes and risk genes.

Faulty genes

Faulty genes, or mutations, are rare. Someone who carries one is extremely likely to develop the disease, often at a younger age.

About one in 100 cases of dementia are caused by inherited faulty genes.

There are three main types of faulty gene – APP, PSEN1 and PSEN2.

Risk genes

The likelihood of someone developing Alzheimer’s can be increased if they carry a risk gene, such as APOE.

It doesn’t mean it’s inevitable, and other factors play a role.

Everyone carries two copies of APOE, one inherited from each parent. The three most common variants are APOE2, APOE3 and APOE4, with the latter having the biggest impact.

Around one in 50 people carry two copies of APOE4.

Source: Alzheimer’s Research UK

You can take a free cognitive function test and discover your ‘Dementia Risk Index’ (DRI) based on answers to a questionnaire designed to reveal your mental and physical health. 

The test explores things like how well you handle cognitive challenges, how effective your exercise regime is, how well you sleep, what your diet and social life is like and how effectively you look after the microbiome, home to much of the immune system. 

Guiding the advice is an impressive scientific board of a dozen consultants and researchers, whose work focuses on Alzheimer’s. This includes:

  • Professor Emeritus David Smith of Oxford, who has run pioneering studies on the brain-sparing combination of B vitamins and omega-3 fats
  • Professor Emeritus Robert Lustig, expert on the metabolic effects of blood glucose and insulin at the University of California San Francisco
  • Dr Tommy Wood, assistant professor of paediatrics and neuroscience at the University of Washington whose studies are uncovering why exercise is so good for the brain

They emerged as a crack team of biological engineers, with a grip on nutrition and the effects of lifestyle.

They have a deep knowledge of the underlying biology and how to shift it in a healthier direction.

This has convinced me to make changes that make my lurking APOE4 gene much less scary.

STEPS TO REDUCE MY RISK OF ALZHEIMER’S

Firstly, I’ve upped the number of times I go to the gym.

I’ve always done some exercise – like swimming, playing squash and a bit of jogging – but it was fairly erratic.

Now, doing it to stave off dementia has given my exercise regime a much clearer focus, and I do it much more regularly.

Before, I might only do something once or twice a week, but now I aim to do one hour in the gym four times a week.

On top of staying active, I’ve started brewing a probiotic-filled drink called kefir that is packed with the beneficial bacteria that keep my microbiome working well. 

I also look after my gut microbiome by making sure I eat plenty of fibrous vegetables.

Keeping myself mentally-challenging is also important.

I’ve never liked crosswords or Scrabble or completing puzzles – probably because I have never been any good at them.

Instead, I read and research a lot, writing campaigning articles, enjoying arguments about politics and psychology, and I reckon that keeps my brain pretty active.

Several memory clinics in the UK now advise patients to make diet and lifestyle changes like these, but foodforthebrain.org suggests they also take B vitamins. 

At the age of 77, my memory for names could be better but I’m not suffering from brain fog and my simple diet and lifestyle regime keep me feeling fine

Jerome Burne

Patrick said: “Over 10 years ago, a trial showed that patients who were starting to lose brain cells and had memory problems stopped getting worse if they took very high doses of B vitamins. 

“This proved a theory he had that one cause of Alzheimer’s was having too much of an amino acid called homocysteine in the brain.”

Scientists studied more than 200 people with mild cognitive impairment (MCI) – sometimes called pre-dementia – when memory and clear thinking start to go.

It’s the stage before an Alzheimer’s diagnosis.

Half of the participants got a high dose of the B vitamins, the others a placebo.

Crucially, a proportion of each group had a brain scan at the beginning and end of the trial to check for changes.

The patients were also tested for levels of a potentially toxic protein called homocysteine, known to be found in Alzheimer’s patients’ brains.

B vitamins were used because they are the only way of lowering homocysteine.

‘ASTONISHING’ RESULTS

The results were astonishing. Brain shrinkage – a critical indicator of Alzheimer’s – was 73 per cent greater in the placebo group than among those getting the vitamins, especially in those with good omega-3 blood levels.

Recently, there has been more good news. Research has found that the vitamins are even more effective if you already have a good level of omega-3 fish oil.

So, of course, omega-3 has been added to my daily cocktail of nutrients. 

I now take heroic amounts of B vitamins (20mg of B6, 400mg of folic acid and 500mg of B12), combined with 3,140mg of omega-3 every day.

I was amazed that this research wasn’t more widely known – a way to cut levels of a toxic compound that could be destroying your brain!

Surely that is good news for everyone? Particularly me on my personal quest of lowering my risk from the APOE4 gene.

A drug company executive told Prof Smith that if B vitamins were a drug, millions would have been spent promoting them. 

The 5 lifestyle changes Jerome Burne has made to reduce his risk of Alzheimer’s

  1. Taking omega-3 (3,140mg) and B vitamin supplements (20mg of B6, 400mg of folic acid, 500mg of B12) daily
  2. Keeping blood sugar levels low by limiting his carbohydrate intake
  3. Going to the gym four times a week
  4. Looking after his gut health by drinking homemade kefir every day
  5. Staying mentally-challenged by reading, writing, campaigning and arguing about politics and psychology

B vitamins, it turns out, are essential for a process known as methylation, which is the action of genes, such as APOE4, changing.

In addition, there is an at-home home pin prick biochemical test, available alongside the DRI, that few doctors’ surgeries routinely check.

It measures your omega-3 index, vitamin D, homocysteine (a marker for B vitamin status), and HbA1c.

HbA1c shows a person’s blood sugar resilience and is used to diagnose diabetes.

Prof Lustig has shown that if it is too high, it could be damaging brain cells and causing weight gain.

“Essentially, lowering blood sugar changes your metabolism in ways that help reduce Alzheimer’s risk,” he says.

“The high levels of blood glucose from a carb-rich diet will come with too much insulin because its job is to clear it away into storage as fat.

“Fairly soon, however, your system stops responding to insulin – insulin resistance – which is bad news because insulin delivers the glucose needed for energy in the brain and muscles.”

So cutting carb intake to lower blood sugar levels is another way to reduce your risk.

At the age of 77, my memory for names could be better but I’m not suffering from brain fog and my simple diet and lifestyle regime keep me feeling fine.

Food for the Brain has now tested 430,000 people and is aiming for a million by the end of next year.

As well as the questionnaire estimating your risk, tests are now available for blood sugar levels, omega-3, vitamin D and homocysteine to see if you need the B vitamins.

The results of this ongoing testing and treating will be anonymised, analysed to find what works best, and then shared with everyone.

The free Cognitive Function Test is available at foodforthebrain.org.

What are the early symptoms of cognitive decline?

WE all notice a natural decline in memory and thinking as we age.

This will be more pronounced in some people, as they experience memory and thinking problems that are mild but still noticeable.

This is described as mild cognitive impairment (MCI). Unlike dementia sufferers, people with MCI can still get on with day-to-day life.

Research suggests that two out of 10 people over the age
of 65 have MCI, according to Alzheimer’s Research UK.

About one in 10 people who’ve received an MCI diagnosis will go on to develop dementia.

Symptoms of MCI include:

Memory – Misplacing items or having trouble
remembering recent conversations.

  1. Attention problems – finding it difficult to concentrate,
    e.g. while watching a TV programme or carrying out
    duties at work
  2. Disorientation – confusion about time, date or place
  3. Thinking skills – problems with planning or completing
    tasks, e.g. managing money, or cooking a meal
  4. Problems with communication and finding the right words
  5. Mood and behaviour changes – becoming irritable, anxious,
    or feeling low

These symptoms may affect someone with MCI all the
time, or they might come and go.

There are steps we can take to keep our brains as healthy as possible. These include:

  • Not smoking
  • Doing regular physical activity
  • Staying mentally and socially active
  • Eating a healthy balanced diet
  • Limiting the amount of alcohol we drink
  • Having your hearing checked regularly
  • Keeping blood pressure, blood sugar and cholesterol
    levels in check

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