Category Archives: Health

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Dementia Friends

Alzheimer’s Society Launches Dementia Friends

Today sees the launch of the Alzheimer’s Society’sDementia Friends” scheme. Dementia Friends is Alzheimer’s Society’s groundbreaking new initiative which will give more people an understanding of dementia and the small things that could make a difference to people living in their community. From today anyone in England can go online and register to become a Dementia Friend.

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Since my involvement with Alzheimer’s Society started, and throughout the time working with Dad to promote awareness and raise money, I’ve noticed something rather startling. Very few people have any significant knowledge about dementia or about how to deal with people with dementia. Bearing in mind 1 in 3 people over 65 and 1 in 2 people over 80 will die with dementia – it’s something that is going to affect us all eventually – whether we get the disease ourselves, or have a grandparent, parent, spouse or partner that is affected.

Combine this startling lack of knowledge with the stigma currently attached to dementia and we have a very naive population that are not ready for the massive increase in numbers of people suffering from the disease – there are already an estimated 800,000 in the UK, rising to around 1.7 million by 2050.

Over the last few months, I’ve had many friends, colleagues, acquaintances and even strangers contact me to ask for advice. Now, I’m not a doctor, or a dementia specialist… and I think this is the key point. I’m just someone with experience of living with and caring for someone with dementia, and how to cope with it. This suggests to me that people prefer talking to someone on a non-professional basis – and this can open the way to getting a diagnosis, help and treatment for the person they are worried about.

But there’s much more to Dementia Friends than this. Knowing how and when to help someone with dementia can be tough – but having dementia friends within the community will mean that there’s always someone around who can help… whether it’s helping someone find the right bus, or making sure local businesses are dementia-aware. Dementia Friends know how to act more sympathetically towards people with dementia in their communities and workplaces, and will undertake to turn that understanding into action to help people with dementia feel included in their communities.

I’m really looking forward to helping promote the initiative and to becoming a Dementia Friends champion myself in due course.

For more information see the Dementia Friends website.

Estimating my Azheimer’s Disease Risk

estimating alzheimers disease risk genetic testing

Estimating Alzheimers disease risk: Testing my genes

Sadly, as many of you will know; my father passed away from complications relating to Alzheimer’s Disease and vascular dementia (mixed dementia) just a few days ago. He had been campaigning to raise awareness and funding for the Alzheimer’s Society for around a year, and was very keen that I should continue his work.

Dad made no bones about the fact that suffering from Alzheimer’s Disease was one of the worst times of his life. He lost his driving license, his independence, his creativity, his memory, his identity and eventually his life to the disease. I think you’ll agree that’s a pretty terrible way to go. And that doesn’t even cover the half of it. Hallucinations, paranoia, emotional, and angry outbursts are some additional things you might experience, or observe, but of course as the sufferer – you can’t always see that it’s the disease that’s causing these changes. In fact, to you, you feel like the only sane one; like the World is caving in around you and nobody else can see it. But you’re normal, you’re sane… you haven’t lost your mind. At least that’s your experience as the person suffering from the disease.

Alzheimer’s disease is 60-80% heritable, or so geneticists estimate. That means that your chance of developing Alzheimer’s disease is around 60-80% down to your inherited genetics. So, as my father has recently died from the disease it’s at the forefront of my mind that I may well be carrying the genes that predispose me to, or may even cause, development of Alzheimer’s disease in my later years. Perhaps this is a selfish way to look at it. But, I’m a scientist at heart so it’s certainly of great interest to me. The personal connection just makes it more real.

So, I’m getting genotyped. By this, I mean I’m sending off a saliva sample to 23andme in order for them to characterise my genes. Part of this process will involve the geneticists looking at a range of my genes that may (or may not) predispose me to getting Alzheimer’s disease (as well as a range of other diseases including cancers and diabetes). In 2-3 weeks I’ll have my results which will tell me if I have any genes that specifically raise my chance of getting Alzheimer’s.

So what if my results come back positive; that is that I have a genetic makeup that gives me a very high (or at least an above average chance) of developing the disease. Well, this will have been the case whether I know it or not, but then I will be armed with the knowledge. And is knowledge power in these cases? I really do believe it is, and that it will become more powerful as science progresses. I certainly am not a believer in the “what you don’t know can’t hurt you” doctrine. Quite the opposite in fact.

New data about using diet, supplements, exercise, pharmaceuticals etc. to reduce the risk of developing AD is being published all the time, and knowing what I will know, I can make the informed decisions as to whether I will incorporate these decisions into my day-to-day life. If my risk is increased, then I can increase monitoring efforts, inform my GP that I am at higher risk, and be more ready if cognitive changes do start to occur.

I’ll update you in a few weeks when I get my results back. Then I will know. And knowing is half the battle.

Jennifer’s Choice: Increasing Organ Donation Rates

organ donation promotionI was touched this evening to see a new fan page on Facebook – Jennifer’s Choice. I’ve posted details of Jennifer’s story below:

Jennifer was born on 12th June 1985 with Cystic Fibrosis. The symptoms of the disease meant she would have a life that would last no longer than her late teens. As a child Jennifer was happy, bright and optimistic. She became an exceptional student and went on to complete a University degree, along with an MA. She always had an unfaltering fighting spirit and with the advent of improved medication, her life expectancy was extended.
But as predicted, her condition deteriorated and in October 2009 she was registered on the lung transplant list. After an 18 month wait, she received a double lung transplant. With much relief it was a great success and Jennifer felt she had been gifted a second chance. In the autumn of 2011 she was able to enjoy a very special day, when she married David, her boyfriend of 4 years.

But less than a year after the operation, the newly married couple’s hopes were shattered when Jennifer was diagnosed with lung cancer. She was told at this time that her donor was a middle-aged person, who smoked 20 cigarettes a day. By the time of diagnosis, the cancer had already spread through her body.

Jennifer maintained her fighting spirit throughout but inevitably, at 9pm Friday 24th August 2012, at home with her family by her side, Jennifer sadly passed away, aged 27.

Jennifer’s fighting spirit lives on and it has inspired us to create a positive and significant change. There is a real shortage of organ donors, 90% of people have already expressed their support for organ donation, but only 29% have registered. Doctors are having to use organs which carry an even higher risk in order to give those in desperate need of a transplant a chance. In the three year period from 1 April 2009 to 31 March 2012, 39% of lung transplants were from donors with a past history of smoking.

 

Our aim is to ensure those waiting for a transplant are informed of all factors which present a higher risk to their health and to make people in good health aware of what a wonderful thing it is to help save someone’s life and give your organs a second life. Think how amazing it would be for your lungs to enable someone to breathe or your eyes to allow someone to see again. Think how incredible it would be to allow someone to live.

I did not know Jennifer, although she was a close friend of a close friend of mine, so I have no direct connection to the campaign. However, the story struck me as so terribly sad – that a young woman should survive so much, only to be brought down by something which was not her fault. This may well be the nature of life, but this sort of situation is preventable.

If more organs were donated in the UK, then this would have been far less likely to happen as Doctors would have the choice to reject lungs from smokers, or other organs potentially damaged by the donor’s lifestyle. However, in the UK right now we have an “opt in” system. That means that the default setting is NOT to donate organs. In my view, this is such a foolish system… we know from endless psychology and behavioural economics research that the vast majority of people are too lazy to change from the default – whatever that is. Hence why we end up with magazine subscriptions we don’t want for years and years, after signing up for “3 free issues”.

In countries where an “opt out” system is used for organ donation – compliance is often near 100%. For example: Germany has an opt-in system – 12% donate organs. Austria has an opt-out system – 98% donate organs. And that comparison is a useful one, I think – not like comparing apples and oranges. Germany and Austria are similar in many ways including socio-economically.

I hope that campaigns like Jennifer’s Choice will start to build momentum and put pressure on the government to implement an opt-out system, where the default is that it is assumed that every person will donate their organs should they meet with an untimely death. I mean, what use is it for your organs to be incinerated or in a ditch, rather than potentially sustaining life for another human being. What a beautiful gift to give – far more than any amount of money and possessions left in a will could ever be!

So, please head over and join the page on Facebook – follow the campaigns progress, and help bring about an opt-out system for organ donation in the UK!