Progress on the PREVENT study
Cate Latto, our Join Dementia Research champion for North West London, is a participant on the PREVENT study, looking at the prevention of dementia through environmental intervention. In this blog, reproduced from the study’s website, Cate recalls the study’s recent Participant Panel meeting.
“We recently had a quarterly Participant Panel meeting with the PREVENT research team in London. So much has been achieved in the two years since we joined PREVENT, which seems to have gone by incredibly quickly! The feeling of connection to the study, its research team and the whole endeavour has been achieved largely by these panel meetings where we speak frankly amongst ourselves with the team. These meetings give us a chance to get to know each other as well as to ‘grow’ the study with consultation between researchers and participants. One of the great strengths of these meetings is the feeling that we are all supported and supportive of, each other, participants and researchers alike.
One of the highlights everyone looks forward to is the discussion of any headlines that have appeared in the media with Craig, (most recently it was the link with alcohol and dementia, mentioned in his recent blog). We look at headlines such as this, and get an opportunity to contextualise it in terms of relevance to individuals and implications for our study. I feel privileged to be able to discuss this with our group. We have often discussed how these headlines can be so misleading when given out of context. This sort of misinformation can actually perpetuate some of the fear surrounding Alzheimer’s, so it is really important to everyone at PREVENT that we are able to give a rational and reasonable view.
Funding is always a topic of our meetings, without it we cannot continue the study and we know we need to look at new streams of funding constantly to fulfil the aims of the study. Due to the momentum generated by every single person involved with PREVENT, there has been a fantastic response to recruitment. This month, PREVENT is launching a Membership scheme. Members can choose to make a Membership Pledge to help continue the study’s funding if they are able to. This seems to be a fantastic way to expand the study and increase awareness of our mission to prevent dementia. When speaking with people about the study it has become clear to me that people of all ages want to become involved in some way and to be kept abreast of the latest developments. The membership scheme will provide a way to reach out to younger generations who are keen to know more and take up a role in the fight against dementia. Everyone has a part to play, we need to facilitate that across the generations.
Currently 210 participants have now completed all tests at the London site, and the new Edinburgh site is up and running. There is a sense of real pride and achievement, to feel that so much has already been achieved, and that we as participants are the ‘Voice’ of the study. We can use that voice in the search for ways to identify risk factors earlier in dementia, and we will provide the ‘material’ that will enable that. It is pretty overwhelming really to think that we can be a part of something that is so huge in every sense! Over the months we have shared our stories and experiences, and together we have felt empowered by the study to speak up. One of the themes that has come up again and again for all of us pretty much is a feeling of powerlessness at times when faced with the challenge of Alzheimer’s and yet now, being part of this study, we are able to speak up, for ourselves and others who have lost their voice in all this. It feels great to be part of something that will effect change and the research team have included us and consulted us and answered our questions as well as asking the questions that will lead to breakthroughs.
As participants, PREVENT has become a big part of our lives, thoughts and experiences, and even our hopes and dreams, and our meetings are where we get to share our ideas together. Dare I forget to mention, we ALWAYS manage to have a laugh along the way…. More than anything else, this study reminds us that we are all as individual as our fingerprints, yet we must find common risk factors to beat the challenge posed by dementia.”