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New Year’s Resolution: Get involved in dementia research

Dr Laura PhippsKirsty MaraisClaire LucasRobin BrisbourneKaty StubbsEd PinchesGlyn Morris

It’s that time of year again where we all start to think about what we can do to be better people. I’ve gone for the classics; I’m going to start at the gym, sort my diet out, and sign up to help beat dementia!

I know what you’re thinking, “help beat dementia? Not heard of that one before”, and I don’t blame you. Taking part in dementia research isn’t often at the forefront of people’s minds, but we believe this needs to change, and here is why…

Why is dementia research important?

There are currently 850,000 people in the UK living with dementia, a debilitating condition caused by brain diseases of which Alzheimer’s is the most common. Alzheimer’s doesn’t just affect memory, eventually it affects a person’s ability to walk, communicate and even swallow. It has a profound effect on the person and their family around them.

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With no new drugs licensed for 12 years, and none available that can actually slow or stop the condition, it is becoming increasingly important to tackle it head-on with high-quality dementia research. However, a problem that many researchers face is having access to people willing to participate in research. We know that 62% of the public would be willing to volunteer for dementia research, but more than four out of five just don’t know the best way of going about it – a problem solved by Join Dementia Research.

Join Dementia Research

Join Dementia Research is an exciting and unique opportunity that enables anyone, with or without dementia, to register their interest in taking part in research. Join Dementia Research is the first service of its kind and since its national launch in February, over 14,000 volunteers have now registered – over 3,700 of whom are already involved in studies.

Although these numbers are fantastic, we still need you. The key to beating the diseases that cause dementia is knowledge. We need to understand the smallest details about how the brain works under normal conditions, and how it changes in diseases like Alzheimer’s.

Registration to Join Dementia Research is quick and easy, taking 5-10 minutes in which you will be asked some questions about yourself and your general health. A match-making process then searches your information against the criteria researchers have set for their studies, and creates a list of the ones that you match to.

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By signing-up, you are saying that you are open to hearing about what sort of research you could be involved in – registering doesn’t put you under any obligation to take part; you only get involved when you feel ready to do so. If you are a healthy volunteer, you could be asked to take part in surveys, questionnaires or even invited to have a brain scan. Researchers will use your healthy brain as a benchmark, allowing them to compare against the brains of people with dementia and uncover crucial differences that may otherwise go unnoticed.

Getting involved in studies through Join Dementia Research means that you will be making a valuable contribution to the fight against dementia. Here are some great examples of research studies on Join Dementia Research that you can get involved in:

  • ‘Time for Dementia Programme’ is a study looking for people with dementia to set aside some time for medical students to come and visit them. This study aims for these students to gain a better appreciation of what it is like to live with dementia, helping to transform the education of our future doctors. The results from this study could have a direct impact on the level of service that people with dementia receive after a diagnosis. This is just one example of the difference that can be made by someone getting involved in research.

  • The ‘SILAD’ study, funded by Alzheimer’s Research UK, is looking at the role of the immune system in dementia with Lewy bodies (DLB). Volunteers over 50, both with or without a diagnosis of dementia, are invited to take part in this study. You will be asked to undertake memory and behaviour assessments, and a have a blood test. Your results will be compared against those of volunteers with DLB, and others with Alzheimer’s disease. The researchers hope that knowledge gained from this study could contribute to the development of new treatments for DLB, and more accurate diagnostic techniques.

  • The ‘Neuroinflammation and amyloid’ study, funded by Alzheimer’s Research UK, is looking for healthy volunteers, and people with a diagnosis of mild cognitive impairment (MCI) or Alzheimer’s disease. You will be asked to do memory tests and have brain scans, allowing researchers to look for brain changes in people with Alzheimer’s and MCI.  The information gained from this study could lead to earlier diagnosis and better treatments for people with MCI and Alzheimer’s.

What if there isn’t anything that appeals to me?

If you want to help to fight dementia, but getting involved in research isn’t for you, then it just so happens that we have loads of exciting stuff happening in 2016.  We have fantastic ways in which you could contribute, from running with #TeamARUKParkrun, to taking part in ARUK National Skydive day, or even joining our Cheer Squad. You can also make a donation to help fund one of our pioneering research projects. If you want to help beat dementia, 2016 is the year for you.

So, please join me in making a New Year’s Resolution to defeat dementia.

You can read more about Join Dementia Research on our website, or if you prefer, you can call our Dementia Research Infoline on 0300 111 5 111.

2 Responses to New Year’s Resolution: Get involved in dementia research

  1. JAN LIGHT 20 January 2016 at 7:22 pm #

    I am interested to learn more about your research programme. I lost my mother last year after struggling with vascular dementia.

  2. Debra 21 January 2016 at 7:12 pm #

    My mother has vascular dementia and Alzheimer’s, at age 80 . She deteriorated very quickly now in a nursing home. I am 56 and already forgetful . So I am happy to get involved and learn more.

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