I lost my dad to dementia. Now I must find out: Will it kill me too One woman's quest to discover her medical fate

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UPDATED:

07:23 GMT, 24 September 2012

I am 56 and a ‘social smoker’ (let’s say I’ve cut down to ten a day – I veer between giving up smoking for years and becoming a serious puffer before quitting again). I enjoy a glass of wine – not necessarily with a meal – my blood pressure is normal and my cholesterol could be lower but I am a healthy weight.

However, my adored father Denis died last year, aged 84, and for the last three years of his life he had suffered with a form of Alzheimer’s. Somewhere in the back of my mind I thought I, too, might one day succumb to a similar fate.

The facts are pretty harsh and to my mind, unfair. If you are a woman, Alzheimer’s disease will take a faster toll on your mental abilities than if you are a man – even when at the same stage of the condition, according to a recent study.

Daddy's girl: Lisa with her late father Denis at her wedding in 1990. He died last year after suffering from Alzheimer's

Daddy's girl: Lisa with her late father Denis at her wedding in 1990. He died last year after suffering from Alzheimer's

Alzheimer’s remains a common, progressive condition with no cure and affects 800,000 people in the UK. But a staggering two-thirds of them are women and scientists have no idea why there is this disparity between the sexes.

One in three women over the age of 65 will develop some form of dementia, an alarming figure that I would normally associate with other diseases such as cancer or heart disease.

Other risk factors, besides age and gender, have a huge bearing. So if you are a smoker, your risk is increased; if you have high blood pressure and high cholesterol, you are also at risk. Drinking and obesity put you in harm’s way, too.

Yet only 43 per cent of sufferers with any form of dementia receive a diagnosis. Perhaps that’s because it can be tricky with symptoms often dismissed as stress or depression. Plus the fact it can develop over a period of seven to ten years.

When I was offered the chance to have a look around Re:Cognition, a state-of-the-art clinic just opened by some of the country’s leading brain and memory experts, I jumped at it.

Delving into her future: Lisa Buckingham

Delving into her future: Lisa Buckingham

Getting a once-over on a brain that
must have taken its toll of several decades of journalistic indulgence
was, at first blush, too good an opportunity to turn down.

I wonder whether my father would have wanted to know that month by month he would become more frail physically and mentally.

Dad
had been an engineer, designing parts of power stations. He’d moved
from London to Cheltenham, Gloucestershire, in the late Seventies.

When he started to have lapses in memory, it was hard for him to concentrate. It was heartbreaking to watch how it looked as if it took him real physical effort to summon up the word he wanted. Without brilliant care from my stepmother Ellen, Dad could have been doomed to an increasingly disorientated and frightened existence. Ellen cared for Dad at home and there was never any question of him being looked after elsewhere.

It was a tough outcome for a man who had been fit all his life – he played badminton, squash and even lumbered around a rugby pitch in his 50s. Indulgence was the occasional beer or couple of Valpolicellas.

As his eldest daughter (I have a younger brother and sister), we had always been close but a more impelling reason for taking a brain scan was that friends had always said – not necessarily flatteringly – how closely I resembled him.

I’d often talked about wanting to know if I was likely to go the same way. It is frightening to see a once-towering parent brought so low and I didn’t want my two daughters Natasha, 21, and Camille, 19, to experience the same.

Although I had not been suffering from any symptoms of Alzheimer’s – such as memory problems or confusion – what had started out with me being curious suddenly turned into something potentially life-changing.

I no longer quipped about whether there was a brain to be detected in my skull – instead I had to face a serious question that would affect my entire family. What would I do if Re:Cognition, off London’s Harley Street, discovered disease What if it raised the prospect of slowly degenerating into a shadow of my former self, a burden, no longer able to remember whether I’ve turned the gas off, been fed or gone to the loo

How would we tell the children How would
we manage the rest of our lives Would I leave my husband bereft of his
wife of 22 years, not quite a widower but a long-suffering carer

Everything changed. The night before
the scan my husband Tony and I had one of our more serious conversations
about what we would do if I was in the early stages of dementia.

How
would we tell the children How would we manage the rest of our lives
Would I leave my husband bereft of his wife of 22 years, not quite a
widower but a long-suffering carer

My
sleep that night was fitful. But when I arrived at the clinic the drill
was simple and I put any negative thoughts behind me. I stripped down
in a changing room and removed all jewellery. I was then escorted by a
medic into the scanner room and slid into the drum after having been
fitted with a device akin to the face mask worn by Hannibal Lecter in
The Silence Of The Lambs, so I could peer through a tilted mirror to see
what those at the control panel were up to.

I
asked to listen to Classic FM through the ear plugs to overcome the
gnashing sounds of the magnets measuring the brain and its activity.
However, while the Re:Cognition 3T MRI scanner is far quieter than many,
it was still overpowering enough to render Mozart inaudible.

In
its own way, though, the stereophonic cacophony – which resembled at
one moment the pinging of a gigantic elastic band, at another a concrete
mixer overlaid by a pneumatic drill – was little worse than some gigs
I’ve been to.

It did not last long at 25 minutes but it was long enough to contemplate that in those precious minutes my life could change. I could have entered that machine a normal fifty-something but left with a diagnosis of early brain shrinkage.

Many patients who end up in an MRI scanner, either private or NHS, have probably had the condition picked up by a loved one who notices you’ve forgotten who you met at last week’s party.

A consultation with an expert cognitive neurologist costs 280 and, if indicated, a specialist 3T cognitive brain MRI scan will reveal if poor memory is accompanied by specific signs that the brain is shrinking – known as atrophy – or other abnormalities, which will cost 600-750.

What are the risks and treatments

Dr Richard Perry, of Re:Cognition, is
also consultant neurologist and Hon Senior Lecturer at Imperial College
NHS Trust, running a memory clinic at Charing Cross Hospital. He said
that combining an assessment from one of the expert clinicians along
with a simple memory test and the scan results can provide tell-tale
signs something is wrong.

There
is no cure for Alzheimer’s. Although a raft of treatments can reduce
the impact for a little while, the terrible mental decline is
inevitable. No drugs have yet been able to stop or reverse the proteins
that damage the brain.

Dr
Emer MacSweeney, consultant neuroradiologist and CEO of Re:Cognition, is
confident the next generation will no longer fear such a diagnosis.
This is because it may one day be possible to spot people at risk of
Alzheimer’s and give them a drug that stops the disease from ever taking
hold. And for those given an assessment and scan, and then told bad
news, there are also clinical trials of new drugs that might just help.

Most importantly, perhaps, it also allows patients to start planning for the future before things get too bad.

‘There
is a significant need for faster and more effective diagnosis and
treatment of memory and cognitive problems, ranging from anxiety and
depression, traumatic brain injury and stroke to Alzheimer’s and similar
conditions,’ says Dr MacSweeney.

Moment of truth: A patient entering Re:Cognition 3T MRI scanner, which can predict future dementia

Moment of truth: A patient entering Re:Cognition 3T MRI scanner, which can predict future dementia

‘When
people are worried they could have a cognitive problem, it is wonderful
to be able to reassure with confidence when everything is all right.
And when there is a problem, early diagnosis allows someone to live the
fullest life they can and enjoy their family for a longer period than if
they wait or rationalise away things they have noticed.’

While I am waiting nervously for my scan print out, Dr MacSweeney deals with a celebrity couple. The wife is suffering from dementia and has been referred by her husband. Dr MacSweeney returns to say she has just had a conversation with the wife.

It was exactly the same conversation they had the week before but the wife has absolutely no recollection. She will, though, now be fast-tracked on to clinical drug trials that might halt her demise.

And then came my results. On my brain were a few marks of high cholesterol. They showed up as little white blobs that Dr MacSweeney said were within normal range but that I should mention them when I next visited a doctor as they could mean a higher risk of stroke.

Watchful waiting is the medical term for this. No treatment was necessary but it is something I must be aware of.

Otherwise, my brain was fine with no shrinkage.

Will I live my life differently from now on I may try to cut down on my few indulgences. Will I book myself in for another brain scan in a decade or so You bet. Were the worst to happen then, at least I could be put on a course of the drugs now on offer which can stop the speed of degeneration if caught in early stages.