Patient and Public Involvement (PPI) – Experts by Experience

We have consulted with family carers, people living with dementia, home carers and health professionals throughout the NIDUS programme of work.

We have a community of interest group which family carers, people living with dementia and home care staff are able to join at any time. If you would like to be added to the mailing list for this group, please contact the programme manager, Jessica Budgett by email at dop.nidus@ucl.ac.uk.

The group meets annually and members of the group have so far contributed to the research in the following ways:

  • Becoming members of our management groups and steering committees
  • Commenting on and co-authoring papers
  • Co-presenting at Alzheimer’s Society annual conference
  • Co-producing the NIDUS-family and NIDUS-professional training and support programmes
  • Interviewing to appoint NIDUS trial research assistants
  • Training NIDUS trial research assistants to deliver the support programmes
  • Advising on the content and design of study recruitment materials 

Here is what some of our PPI members have had to say about their experience in the development of NIDUS:

Knowing what we as a family went through when my Father had dementia encouraged me to take part in this study. The NIDUS family values living well with dementia and by involving carers, people with dementia and professionals aims to look at and try to help deal with problems that may arise and suggest ways of dealing with them in order that everyone can live as well as they possibly can with dementia. - Sue Boex, PPI member
Having cared for my wife from diagnosis to her peaceful death at home ten years later I learned much about caring when I was (a) prime carer but used paid care to take time out. Much of the work that has been done over the past couple of years follows the lessons I learned and practiced. - Peter Riley, PPI member

We are also carrying out an evaluation of the experiences of the coproduction groups. We will explore the role and the support/training needs of people with dementia, family carers and home carers and use this to inform and improve future involvement in the co-production of interventions and in research more generally.

The following PPI review paper was published last year:

Burton, A., Ogden, M., & Cooper, C. (2019). Planning and enabling meaningful patient and public involvement in dementia research. Curr Opin Psychiatry.