Bringing together patients and researchers in dementia research

Research has taken great strides against some of the most serious diseases, including cancer and HIV. One man hoping it will do the same for dementia is Professor Martin Rossor, National Director for Dementia Research at the NIHR. Here, Martin talks about a ground-breaking new service that’s leading the way.

Dementia occurs when the brain is damaged by diseases, such as Alzheimer’s disease or a series of strokes. The specific symptoms that someone with dementia experiences will depend on the parts of the brain that are damaged and the disease that is causing the dementia.

Dementia is used to describe a group of symptoms including memory loss, confusion, mood changes and difficulty with day-to-day tasks.

The disease affects over 850,000 people in the UK, with 25 million of the UK population having a close friend or family member affected. Every three minutes someone in the UK develops dementia and the number of people affected is predicted to double in the next 30 years. Delaying the onset of dementia by five years would cut the number of people affected with dementia by a third.

Increasing our knowledge of dementia

In March 2012 David Cameron challenged the entire dementia field, calling on the public, charity and private sectors to do more to improve diagnosis, care and research. This call has been reconfirmed with the Prime Minister’s Dementia Challenge 2020, issued in March of this year.

Alongside this, a new national poll* has shown that almost two thirds of the general public (62%) would be willing to take part in dementia research, but more than four out of five people (81%) wouldn’t know how to volunteer.

The lack of access to willing volunteers is holding back critical research into the condition with government figures showing that less than 5% of people with dementia take part in research studies.

There are numerous questions about the cause, diagnosis, treatments, and best care for which there are no clear answers yet. Our knowledge of dementia also currently lags behind that of other major diseases, such as cancer and heart disease.

In order to improve the lives of people with dementia now and in the future, we need to find ways to improve the accuracy of diagnosis, to develop new preventions and treatments and to establish new care approaches. Research into dementia will help find these answers.

Introducing the Join Dementia Research service

Having launched in February 2015, there are already over 7,000 people signed up, and over 1400 of those have already taken part in a research study.

The first of its kind in the UK, Join Dementia Research is a new nationwide online and telephone service that promises to accelerate the pace of dementia research. It allows people with and without dementia to register their interest in studies, helping researchers find the right participants at the right time.

Having launched in February 2015, there are already over 7,000 people signed up, and over 1400 of those have already taken part in a research study.

With the continued focus on dementia research and increasing levels of funding we expect to need even more people to participate in dementia research over the coming years. Traditionally it has been difficult to identify the right people for the right study at the right time, but Join Dementia Research is streamlining this process and we are already seeing the benefits of this boost in volunteers for research.

Clinical trials in dementia

Historically, identifying potential research participants occurred in memory clinics and GP surgeries and relied on the clinical team screening medical notes. Join Dementia Research changes this radically, such that persons living with dementia, carers and the general public drive the process.

Join Dementia Research makes it easy for researchers to find people who match their specific study requirements. As a result, it will help researchers plan their studies more effectively and deliver research more quickly and cost effectively.

This will deliver improvements to people with dementia faster than ever before. It’s also important for people with dementia and their friends and family to be given the opportunity to take part in research, if they choose to.

Each study is different, from the length of the study, to whether the study involves blood tests, scans and whether there is an intervention such as a new drug, or is only observational.

Some studies may require you to attend your local hospital, while for others you could take part at home. There are also many different methods for carrying out research, which might involve in-depth interviews, focus groups or questionnaires.


How can someone sign up to Join Dementia Research?

Join Dementia Research
Join Dementia Research
www.joindementiaresearch.nihr.ac.uk

Anyone interested in volunteering for dementia research can sign-up online at www.joindementiaresearch.nihr.ac.uk or those unable to register online can contact the charities: Alzheimer’s Research UK 0300 111 5 111, Alzheimer’s Society 0300 222 1122 or Alzheimer’s Scotland 0808 808 3000


*New poll figures quoted are from YouGov Plc. Total sample size was 2,227 adults and fieldwork was undertaken between 29-30 January 2015. The survey was carried out online. The figures have been weighted and are representative of all UK adults (aged 18+). The survey was commissioned by Alzheimer’s Research UK.

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