Do you have experience of dementia or caring for someone who has? Could you help us to improve the research that we are doing into this?
Dementia is a complex disease, which may affect all aspects of life. There is much support available but people with dementia and their families and carers often report feeling lost in the maze of services. Some have even reported that the stress of trying to find the help they need can be “more burdensome than caregiving itself” and sadly, some just give up trying. It’s good that there are many pieces of the care ‘puzzle’ but how do they fit together?
We are a research team of people with our own experience of navigating dementia services, in health, social and community care systems. As part of a research project, we want to talk to people about their experiences, what problems they have faced and share ideas that could help others. From this initial small-scale research project, we plan to develop a funding bid for a more extensive research project, aiming to develop potential solutions to simplify the maze of dementia services.
If you live in Oxfordshire, or Warwickshire, and would like to consider supporting this research, by sharing your “story” and experiences please do contact us.
Who we are looking for:
We are looking for people to join our Public and Patient Involvement (PPI) Advisory Group. The PPI Advisory Group is a group of people with personal experience of dementia. You may be living with dementia yourself, or have experience of supporting someone with dementia now or in the past three years.
You do not need to have any specific skills to join as PPI Contributors to our research project, other than the willingness to share some of your experience and draw on that to comment on key aspects of the project. For example, we might ask you to advise on the research priorities, the research design, whether the data collection methods are appropriate for people with dementia or their carers, development of the grant proposal, or suggest how you would prioritise different issues arising during discussions.
We will ask you to:
- Take part in three on-line meetings between January 2021 and July 2021. If taking part in a meeting is not possible for any reason, we would be happy to make alternative arrangements. There may also be times when we contact you for advice related to the project.
- Additionally, two PPI Advisory members will take part in up to three on-line Reference Group meetings between February and July 2021. The Reference Group will be attended by individuals representing local health and social care providers and commissioners. This will bring together a range of perspectives and support collaboration between local stakeholders.
- Read through documents related to the project – before or after our Advisory group meetings.
Your contributions will be central to the success of this project.
What you can expect from us:
- Phone conversations or online meetings to discuss questions you have about the project
- Opportunities to talk through and answer any questions, in confidence, before or after the PPI Advisory Group or Reference Group meetings
- A final report of the outcome of the project, with your support credited
- Opportunities to be involved in future research, if further funding is secured to expand the project
The deadline for applications for the PPI Advisory Panel is the end of January 2021.
If you would like to be involved with this research in any way throughout the life of this research – please do contact us, we would be delighted to hear from you.
We are able to pay PPI Contributors an honorarium. The rates are currently £40 for a 2-hour meeting including preparation and follow-up, together with up to £5 for expenses.
December 2020 – July 2021
Nuffield Department of Primary Care Health Sciences, University of Oxford
For more information, and to join the Dementia Care Access Patient and Public Involvement Group, please contact:
Dr Rene Wiedner, at Rene.Wiedner@wbs.ac.uk or call 024 765 28619 / 07387 238359
Dr Chris Lawes Lay PPI Lead, at Chris.Lawes@wbs.ac.uk.