The ‘South Yorkshire Dementia Disorders Research Advisory Group’ (SYDEM RAG) is a committee created to bring together people with dementia, carers and members of the public from the local area of Yorkshire. The Advisory Group meets face-to-face on a quarterly basis and also has monthly contact via email and post to review projects and documents.
The South Yorkshire Advisory Group offers assistance for all dementia researchers throughout the South Yorkshire region to ensure that the views and needs of people with dementia and carers are considered within dementia research. Members of the Advisory Group have assisted researchers with:
- Promoting improved knowledge, based on lived experiences of dementia and individual contributions.
- Identifying and prioritizing research topics that are relevant to people with dementia.
- Offering suggestions to improve the recruitment of people with dementia in research participation, as well as identifying any barriers to involvement.
- Identifying improved research measures
- Feedback and comments on Patient Information Sheets
- Writing lay-summaries for research proposals and Research Ethics Committees.
By ensuring that people with dementia are effectively involved in all stages of dementia research, the South Yorkshire Dementia Disorders Research Advisory Group enables people with dementia, and carers, to have a more authoritative voice. This can also contribute towards building public credibility and trust in clinical research and can improve the quality of external evaluations.