What would you want from a dementia treatment?
It seems like a simple question, doesn’t it? But despite a growing awareness of dementia, it’s a question that’s never been asked of large groups of people. And this means we’re lacking a piece of information that could be vital for charities, researchers and people tasked with making decisions about new treatments.
That’s why today, we’re launching a new survey that asks people about just this topic. We’re aiming to get a broad understanding of what the general public thinks – so we need you to take part to make sure we capture as many views as possible.
Every perspective is unique
You might ask why we don’t already have the answer. After all, it’s Alzheimer’s Research UK’s mission to bring about a life-changing treatment. We speak to people on a daily basis who are standing with us in that mission, who’ve been affected by dementia and who tell us just what a treatment would mean to them.
These stories are incredibly important. But each person’s experience of dementia is unique, and every individual has different aspects of life that are important to them. For example, while one person may value their ability to live independently above anything else, someone else may prize their ability to maintain relationships with their friends and family.
All these perspectives are valuable. With our survey, developed with academics from the University of Edinburgh, we aim to gather opinions from as many people as possible. This will help us to pick out trends in opinion, and learn whether different groups of people tend to value different things.
Why is this so important?
This information is especially valuable to organisations involved in approving new treatments. It’s this approval process, and the need for solid data to inform it, that inspired our survey.
It takes many years and a huge investment to turn a promising research idea into a new medicine. At Alzheimer’s Research UK, we’re funding research across the ‘drug discovery pipeline’: from the first ideas being tested in the lab, through to early-stage clinical trials in people.
With little information available about what benefits people would most want from a dementia treatment, it’s much harder for regulators to answer this crucial question. Our aim is to provide more information to help the people tasked with making those decisions.
In the future, we’ll also be working to understand people’s views about possible side-effects, to help us build an even clearer picture. Ultimately, we want to make sure that in future, the best treatments can make it over the final hurdle, so that they can be given to the people who need them.
Tell us what you think
And that means we need your help. Anyone over 18 – with or without dementia – can take part in the survey. It should take around 10 minutes to complete, and you’ll be asked to give your views on the aspects of life that you’d most want a future dementia treatment to help you with.
Please take the time to share your views, and ask your friends and family to do the same. The more people who take part, the more valuable the information will be – and you’ll be doing your part to help shape future dementia treatments.
About the author
Hilary is Chief Executive of Alzheimer’s Research UK, which is a charity working at a global level towards a world where people are free from the fear, harm and heartbreak of dementia. The organisation’s aim is to raise awareness of the diseases that cause dementia, to increase dementia research funding and improve the environment for dementia scientists in the UK and internationally. Alzheimer’s Research UK is at the forefront of challenging people’s perceptions of dementia, finding innovative ways of communicating and creating new platforms to engage the public in a united fight to defeat dementia.