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This survey is being carried out by Alzheimer’s Research UK and the University of Edinburgh. This page outlines why we are doing this research and what it will involve, to help you decide whether to take part. Please read the following information carefully and discuss it with others if you wish.

This survey is being carried out by Alzheimer’s Research UK and the University of Edinburgh. The purpose of the survey is to understand what matters to people when new treatments are being developed for dementia.

Dementia is a condition caused by brain diseases, most commonly Alzheimer’s disease. As these diseases progress, brain cells die and the brain becomes less able to function, making it more difficult for people to carry out everyday tasks.

When we’re talking about dementia, we’re talking about these changes in brain health that get in the way of everyday life.

Scientists are working to develop treatments to help people with dementia and even to one day prevent dementia.

We know diseases like Alzheimer’s affect people differently. This survey aims to find out people’s views on what they’d like these treatments to help with.

This project has been fully developed and tested alongside people living with dementia. Before designing this survey we carried out a focus group study. The findings suggested that the things people valued most fell into five categories:

  • Everyday functioning
  • Enjoying life
  • Memory concerns
  • Relationships and social connections
  • Sense of identity

We’ve designed this survey to help us explore these themes with many more people.

We will ask a series of questions about your brain health. We will also ask you to provide examples of what YOU consider important in your life.

This survey is open to anybody who is over the age of 18.

Please note it is not possible to save your progress, so we ask you to complete the survey in one go.

The survey should take around 10 minutes to complete.

Your contribution is very valuable.

Your answers will help researchers understand what matters to people when developing new dementia treatments and will also help inform healthcare decision-makers who assess future treatments.

You should not expect to directly benefit from filling in the survey.

If you want to ask a question or raise a concern about any aspect of the study, contact [email protected] and we will respond immediately.

Remember – you are free to stop completing the survey at any time.

We will produce a report on the results, which we will publish on Alzheimer’s Research UK’s website. We will also publish the results in academic journals and present them at conferences.

You will not be identified in any reports or publications.

Alzheimer’s Research UK will use your answers to inform its policy work in this area.

Anonymised data from this survey may also be used to inform the development of a tool to measure whether future clinical trials in Alzheimer’s disease offer individuals a real meaningful benefit.

Alzheimer’s Research UK, the UK’s leading dementia research charity.

The team organising this activity are:

  • At the University of Edinburgh: Prof Craig Ritchie, Dr Graciela Muniz-Terrera, Dr Saturnino Luz and Stina Saunders.
  • At Alzheimer’s Research UK: Dr Alison Evans.

The ACCORD (Academic and Clinical Central Office for Research and Development) Medical Research Ethics Committee has reviewed and approved the project.
University of Edinburgh may access the anonymous data just for audit purposes.