Join Dementia Research is an online service that will connect volunteers and researchers, working together on studies into dementia around the country.JDR_cmyk

This week, we’re showing you short interviews with those researchers and volunteers – to let people know exactly the kind of studies being carried out, that you can take part in through ‘Join dementia research’.

helenrobinsonToday we are hearing from the people involved with the PrOVIDe Study, which looked into the problems people with dementia have with sight and vision.

Helen Robinson was the Principal Investigator on the PrOVIDe Study and is an Advanced Nurse Practitioner in Middlesbrough.To her knowledge, it was the first time that her local Trust had given the role of Principal Investigator (PI) to a nurse.

“This was my first foray into research and my role as PI for the PrOVIDe study was a really varied one.

The job ranged from the identification and recruitment of patients from my own practice and from local care homes to ensuring that all the correct informed consent was done and that the required approvals and on-going communication was the regulatory bodies involved was carried out appropriately.”

Helen recognises that there are many common barriers to recruiting patients into clinical studies like hers. A lack of knowledge about research or a lack of understanding about a condition and the implications of a clinical study can all impact upon recruitment.

“In the populations that I work closely with, there is sometimes a misconception that, just because someone is experiencing memory problems, they have nothing to contribute to research.

Nothing could be further from the truth and this is something I feel very passionate about.

Everyone has something to contribute to research and, by getting involved, you can become part of the wider development of the treatment, care or services available to patients.”

The PrOVIDe study was set up to measure the prevalence of a range of visual problems in people with dementia and to identify and describe the reasons for any under detection or inappropriate management of visual impairment in people with dementia.

‘The interim analysis that we have indicates that this study was very worthwhile and much needed’ Helen explains.

‘It will give us not only a greater understanding of the requirements of this growing population but also give us tools to anticipate their likely needs in the future’.

mrmrsmWhen she was first diagnosed with Alzheimer’s disease, Mrs M was given an appointment to meet with the specialist nurse.

At this point she was given a lot of literature to read and this bundle included an invitation to take part in the PrOVIDe study.

The study was being carried out to establish if there was a correlation between dementia and failing eyesight.

 “This is the daunting element. My wife who was highly articulate and conducted herself in a highly professional way for many a year now finds having Alzheimer’s disease to be a disheartening experience.” explains Mr M.

But both of them acknowledge that being involved in the PrOVIDe study was good and Mrs M enjoyed the experience.

‘And it certainly wasn’t an intimidating experience!’ agrees Mr M.

For them, the most important part of the study was that the research team visited them at home. There was no need to get transport into town to get to the local optician.

Instead, all of the study was conducted in the comfort of their home from the very first visit to the final visits which included a new pair of glasses for Mrs M.

 “This made the research seem very easy’ Mr M concludes. ‘It was easy to take part because we could do it all right here instead of having to travel anywhere. And that convenience was hugely important to us.”

Mr M was then getting involved with focus group meetings to advance the research still further, on the second part of the PrOVIDe study.

The hope is that the final results will show, not just a need for this type of research, but the benefits of detecting any visual acuity problems as quickly as possible after diagnosis.

Lady-LookingatleafletFind out more about Join dementia research, and you can help, by clicking on ‘Why sign up?’. You can also help us spread the word online, through social media, and with our free promotional material.

Have you been involved in a study on the service? What did you learn? If you are interested in telling your story, please complete the online sign up form.

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