Sue Boex – Getting involved in research
With the INVOLVE: Changing Landscapes 2015 conference under way this week, we decided to speak to Sue Boex, one of our 20 regional ‘Join dementia research’ Champions, about why and how she got involved in dementia research.
Sue became a carer for her father after he was diagnosed with dementia. Her father was diagnosed quite late and the family struggled to cope. They knew very little about the condition and there was limited treatment available. She feels passionate that more research is needed so that “Nobody else finds themselves in the position we were in. There’s still very little hope for people who get a diagnosis. There’s no cure. That needs to be everybody’s goal. And through research we need to find ways to help people live with the disease more comfortably”.
Sue is convinced that research is also essential to make sure that people don’t get the wrong treatments, “In my father’s case, he was given antipsychotic drugs as that was the treatment at the time because he was very restless, but then he developed a tremor. Through research it’s since been found that he shouldn’t have been given those drugs. It is one of the benefits of research that these drugs are now not given routinely, enabling people to live a more normal life without being drugged.”
Sue wanted to help promote research and started fundraising for the Alzheimer’s Society, “Because we were the poor relations in terms of research funding”. She took part in four treks to raise money, climbing Machu Picchu and crossing the Himalayas, “I met somebody on one of these treks who said ‘Why don’t you get involved in the Research Network?’ So that’s how I came to be involved”.
Working with the Network and ‘Join dementia research’
As a member of the Alzheimer’s Society’s Research Network, Sue reviews research proposals helping make decisions as to which projects get funded, “We read and mark all the proposals out of ten. Then the medical people and researchers look at them and finally we have a Grant Panel Meeting and discuss each one”.
Sue has since gone on to work with Clinical Research Network: DeNDRoN (Dementias and neurodegeneration), joining their Dementia Clinical Studies Group and working on the ‘Join Dementia Research’ service (www.joindementiaresearch.nihr.ac.uk) providing a carer’s perspective on the communications panel. The service, is soon to be launched nationally across the country, and will make it easier for people to register their interest in taking part in studies, and be matched with studies.
Sue has also worked as an adviser to individual research projects, for example on a study looking at malnutrition in care homes and on a laboratory-based project looking at the genetics of Alzheimer’s disease.
In all these advisory roles, Sue brings her experience of being a carer to the discussions. Her knowledge helps to shape the research so that it is more relevant and useful to patients, “Sometimes the academics are so focused on the research, they forget the patient is at the heart of it. We have to be the voice of the patient to ensure that the research will benefit the patient and to remind them why they are doing it – it is very important because with dementia very often they cannot do this themselves”
She can also provide researchers with advice on how to make their research practical and more acceptable to the people taking part, “Some of the proposals say ‘We’ll do that and we’ll ask them this’, and you know it won’t work because you’ve been a carer. My father lost his speech – he couldn’t talk, couldn’t make a cup of tea, couldn’t do anything. You have to bear that in mind when looking at a research proposal and tell the researchers when you just know that it isn’t going to work”.
Becoming a Researcher
Most recently, Sue has been asked to become a co-researcher on a study at Warwick University jointly with the Alzheimer’s Society. This project is looking at the care given to people with dementia after leaving hospital, “I’ve been on a training course at the University and I will actually have to ask the questions. I have to interview people, so that’s quite different – being on the other side!” Sue will also be helping with analysis, again drawing on her experience as a carer to help interpret the findings. Her involvement will help to ensure the research is grounded in reality and reflects the interests and needs of families affected by dementia.
Sue has gained a lot from being involved in research. She feels she has a more in-depth knowledge of what’s going on and feels encouraged by the efforts being made, “It’s very positive, all that’s going on at the moment. I have come across really dedicated and enthusiastic researchers – they are brilliant. I’ve seen that they really care about people”. On a personal level, Sue enjoys being able to help and gains satisfaction from knowing that “Lay people have made their views known and that helps the people with dementia who can’t always speak up for themselves”.
Interested in Getting Involved?
There are many different kinds of health and social care research taking place in the UK and worldwide. Members of the public can become actively involved in research projects. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials, undertaking interviews with research participants. It is different to participation, which is where people take part in a research study (e. g completing a questionnaire or participating in a focus group as part of a research study).
To find out about the different ways you can get involved in dementia research, visit the NIHR CRN Dementias and neurodegeneration website ( http://www.crn.nihr.ac.uk/dementia/patient-carer-and-public-information/)
To find out more about INVOLVE, visit their website (http://www.invo.org.uk/find-out-more/getting-involved/).
INVOLVE has also recently published guidance on how to actively involve people in research (http://www.invo.org.uk/posttypenews/social-media-to-actively-involve-people-in-research/)
If you are interested in signing up to ‘Join dementia research’, please click on the side bar in the right hand column.