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Initiative to encourage more people to get involved in dementia research

Posted on the 10th February 2016

A team of research practitioners from Lancashire Teaching Hospitals NHS Foundation Trust and Lancashire Care NHS Foundation Trust are launching an initiative to encourage more people to get involved in dementia research.

'Join Dementia Research" is a campaign that has been launched along with the Prime Ministers" Dementia Challenge and has been developed by the National Institute for Health Research (NIHR). David Cameron has set out the ambition that at least 10% of people living with dementia should be participating in research; the current figure is 4.5%.

Recent figures show that more than 17,000 people in Lancashire are living with dementia, and that number is expected to continuously rise as people are living for longer.

The award winning research team is launching a 'Join Dementia Research" awareness week (8th- 12th February) to try and get more people to sign up to the 'Join Dementia Research" website.

People are invited to come along to Royal Preston Hospital, Chorley Hospital and the Primary Care practice at Holland House Lytham at various times in the awareness week to find out more. The team will be talking to people about dementia research and how they can get involved. For details about where they will be please our website

We will also be holding a live 'Twitterchat" about dementia research, on our Twitter page @LancsHospitals on Wednesday 10th February at 2:30pm so please follow us with #lancsdemres and join in our chat.

Nichola Verstraelen, Lead Dementia Research Nurse at Lancashire Teaching Hospitals NHS Foundation Trust, said:

"Anybody who is affected by dementia can register their interest to get involved in research. We offer a range of studies from complex cutting edge drug trials to simple quality of life questionnaire studies, and we are constantly setting up new studies. Dementia is on the increase and the only way we will be able to develop new treatments and hopefully find a cure one day, is through research. At the moment the research team are reliant on interested clinicians referring patients in for specific studies - but we realise that there are hundreds of people living in Lancashire who could also be given this unique opportunity. The aim of this awareness week is to try and get as many people as possible to sign up to the join dementia research website so that they have a direct route to the research nurses in Lancashire who will offer them studies which they may or may not want to be part of. We are also encouraging people without dementia to sign up - there are specific studies which require people to act as comparative controls. We believe that it is every persons right to be given a choice to be involved in research. Signing up gives people information about particular studies and therefore options to take part or not - research is often seen as mysterious, but we are raising awareness that you can take part right here in Lancashire. Many of our patients and families tell us that they have benefitted not only from the trial they have taken part in but also the extra level of support from the nurses"

Karen Palmer, Clinical Research Nurse Manager at Lancashire Care NHS Foundation Trust said:

"We are looking forward to the awareness week and having the opportunity to talk with members of the public about the importance of clinical research. Dementia is a key area for research as there is currently no known cure, however through effective clinical research studies we have already been able to make some progress in slowing down the symptoms and helping people lead their lives as normally as possible for as long as possible."

Sandra Perkins who lives in Garstang, has become a Dementia Friends Champion after her husband Alan was diagnosed with the disease. When Alan died Sandra and her son decided to donate his brain and spinal cord for research, she said:

"It was a comfort to me to hope that the donation might give more insight. I am taking part in a study myself and believe I owe it to Alan`s memory to do that. I have also donated my brain for research when the time comes that I don`t need it.

I have a wonderful son and daughter law and two grandchildren, Katie and Joe, I need to do all I can to support the research wherever and whenever I can in the hope that a cure or treatment of this awful disease can be found and that they and their generation may not have to endure what Alan and I and thousands of others have had to. I am convinced that researchers will eventually get the breakthrough that is needed, it happened with Cancer and it will happen with Dementia. By making people aware that they can take part in research hopefully this will happen sooner rather than later. The important thing is that taking part is not demanding or costly but could be life changing for many."

Vice President of the Alzheimer"s Society, Politician David Blunkett says:

"As Vice President of Alzheimer`s Society I have seen first hand the devastating impact of dementia that affects 850,000 people in the UK. Therefore, I am fully in support of Lancashire Teaching Hospital"s awareness week for Join Dementia Research and urge as many people in the area to sign up to the website to help the fight against dementia. I`ve pledged my brain tissue for research as I know how vital it is to defeat dementia.  I hope to be using my brain for a good while yet, but I`m pleased to know that it may help people when I no longer have need of it."

Fylde MP Mark Menzies said:

"Many people know that dementia care is a cause close to my heart, but research to find treatments and a possible cure are just as important. For far too long this terrible disease has been dismissed as a natural part of the ageing process, when the truth is it is one of the biggest threats to humanity and one which we must fight.

"The Prime Minister"s Dementia Challenge sets out the ways in which we intend to fight this affliction, and research is key to that battle. More than £300m has already been committed for UK research and a separate global fund to drive international innovation.

"However, it is people who will be key to beating this disease and I would encourage everyone to get involved in research projects which could save countless lives and end the suffering of millions."