RogerLeekMy name is Roger. I was a Carer!

I was a Carer for my mother who died with Alzheimer’s disease. Some years later I was also a Carer for my wife Teresa who died with Motor Neurone Disease (MND).

I lost the two most precious people in my life! Although these tragedies’ were a few years apart, there were many similarities. Frustration over so much time on the phone chasing services and answering the door . . . instead of being a Carer – able to enjoy whatever time we had left together. But there was also the anger that these diseases could not be prevented or have been beaten. Why no treatments other than to ease the symptoms? Why no cure? Many other diseases have been beaten? Smallpox, Diphtheria and Polio are diseases that belong to history. We have known about MND and many other dementias for over a 140 years (that was back before the electric light bulb was invented!) . . . and still we don’t fully understand the causes and can find no prevention or cure.

Research needed into dementia

Once upon a time the same was true of cancer. Once upon a time just the very word ‘cancer’ was seen as a death sentence . . . but that is NOT true today!

Why is it that more people now survive cancer than don’t? Why can we survive cancer but not dementia?

The answer is more than a decade of intensive, quality research and – most importantly – the willingness of the public to support and to become involved in that research!

Carer support and research

So, I knew I had to do something . . . but what could I do? I decided I wanted to help carers but I also wanted to get involved in research. Since then I have then concentrated my efforts on those two issues alone: carer support and research. And everything I do is in some way linked to those objectives.

Making a real contribution

I did at first wonder how, can I – as an ordinary bloke – contribute anything to something as complicated as research . . . especially when it is as mind numbingly complex as neurology? How can I even be expected to sit down at the same table with some of the greatest minds on the planet and hold a sensible conversation – let alone make a real contribution?

Well – I did and I can . . . and I do. And so too can anybody else!

Your experience is vital, and important, and real. Many very clever scientists and researchers and clinicians know lots about these diseases in laboratories and under their microscopes – but carers are the real experts at what it is like to live and to struggle and to see loved ones die with these diseases. Research needs to know that. Dementia research needs to get to know what you know!

Dementia and research

Dementia is an ‘umbrella term’ for a series of symptoms. There is perhaps 300 or more neurodegenerative disease that fall under that umbrella term of “dementia”.

But the good thing is all research into any of the various dementias can help the others too – not just the specific disease being studied. I have been involved in MND research. I am a member of a Trial Steering Committee of clinical trials for people living with MND, based at Sheffield University that has been rolled out in 11 UK hospitals. But one of the first things I learned at Sheffield Institute for Translational Neuroscience (SITRaN) was and is that some of the biggest contributions towards our understanding of how MND works and what is involved with the diseases progression did not come from MND research at all – but sprang out of their research into Parkinson’s & MS. Just in the last week the TBK1 gene has identified as being a contributing factor in the inherited variant of MND known as familial ALS. The TBK1 gene is also known to be a causal gene in Frontotemporal dementia!

Dementia research needs to play “catch up” – none of us want to spend yet another 10 or more years with no new understanding of causes and process, another decade of no preventions, of no real treatments, of suffering and pain and no cure or even the hope of one . . . that cannot be an option!

How you can get involved in dementia research

Many, many people do want to help and become involved in dementia research but don’t know where to find out about it, or how to become involved.

Now we have ‘Join dementia research’, which allows people to express their interest in taking part in dementia research and to be matched to suitable research studies. And to be told and updated when new additional studies come along!

Think of ‘Join dementia research’ as a ‘dating agency’ that you can join either on the internet, by phone or by post.

Don’t be put off and think it is too difficult to do, it’s not, and there is a ‘Help Desk’ you can phone anytime you need to assistance or just to ask a question. The people on the phone are ordinary people like us, people from Alzheimer Scotland, Alzheimer’s Society and Alzheimer’s Research UK. People you can talk to, people who understand.

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