Leeds Beckett University - City Campus,
Woodhouse Lane,
LS1 3HE
Lived Experience Group
Affected by dementia?
Join our lived experience research advisory group.
Share your experiences of dementia, as a diagnosed person or as a carer:
- Present with us at conferences
- Be involved in what we should be researching
- Become an advisor for a study
No previous experience is needed.
Meetings can be in person or online and you will be fully supported by our team.
Your time and expenses will be reimbursed.
Being a Lived Experience Expert at Leeds Beckett's Centre for Dementia Research
While it is hard to be a full-time carer, it brought to my awareness that lifestyle can also have a role to play in dementia and inspired me to make changes to slow down my mother’s decline as well as reducing my own risk.
John Hyde: Lived Experience Expert at Leeds Beckett's Centre for Dementia Research
Dementia affected my sense of purpose, but being included in research has helped to bring it back.
These FAQs are here to answer common questions and provide general guidance. The answers might change depending on the specific project. If you're unsure or need more details, feel free to get in touch.
This depends on the project, but we generally keep our group discussions small, with no more than 10 people per meeting.
The duration of meetings varies depending on the project, but they typically last between 1-2 hours. We will always let you know how long the meeting will be beforehand, when providing details about the research so you can decide if you would like to participate. Longer meetings include a short comfort break.
This depends on each project. It might be a one-off meeting or a series of meetings at a few weeks or more apart from each other. We will tell you about the meeting frequency beforehand.
Yes! We remunerate all our advisors at the standard rate (a minimum of £25 for a one-hour meeting) following guidance from the National Institute for Health Research (NIHR). The NIHR is the UK's leading organisation funding and supporting health and care research to improve people's lives. Remuneration also increases with the time spent to make sure that you are fairly compensated for your time.
Payment is made by shopping vouchers or bank transfer, depending on your preference.
Yes, if you need to travel to attend a meeting in person, we will cover all your expenses.
We usually send information about opportunities and meetings via email. If you'd prefer a different way to communicate (for example by phone or post) let us know, and we'll be happy to adjust to your preferences. If you'd prefer to have a one-on-one conversation with the researcher over the phone or online instead of attending a group meeting, we'd be happy to arrange that as well, if possible.
We always begin our online and face-to-face meetings with an informal introduction to help everyone get to know each other before we start. We will never share members' contact details without permission to protect data confidentiality.
Meetings are usually held online, but we occasionally host in-person ones. We will always inform you in advance, when sending out the opportunity brief, so you can decide before signing up. If the meeting is online, we use Microsoft Teams. If you are not familiar with this platform, we are happy to run an introductory session with you to make sure you can get online to join the meeting with no problem. If the meeting is in person, it will usually be in Leeds.
Yes, you can take a break at any time during the meeting if you feel tired, find the discussion difficult, or feel upset. We will plan breaks in any longer meetings. Our researchers will also be happy to support you if you need any assistance.
Yes, we very much welcome and encourage carers' support. We will pay their travel expenses if they attend to support you.
Yes, you are very welcome to contact the researcher in charge of the project and ask questions before putting your name forward. Their contact details will be on the advertisement material when we email the opportunities.
Yes, you are free to change your mind and stop taking part at any time.
When we get a lot of responses for a research call out, we might not always be able to select everyone who expressed an interest. We will aim to select people with most relevant experience and who have been less involved in the past to give everyone a fair chance to take part. We are also keen to make sure we include diverse perspectives in our research.
