Involving people with dementia and their carers in research

2004 Conference

People with dementia have largely been excluded from all stages of the research process, mainly because of the perceived challenges to verbal communication and understanding. A ?user panel’ consisting of people with dementia and their carers was developed as part of a wider research study examining quality of life outcome measures for people with dementia and their carers.

Active partnerships between people with dementia and researchers through consultation and collaboration were used to empower people with dementia to become more involved in research; to monitor and evaluate the effects of their involvement; and to develop models for identifying and prioritising relevant and appropriate outcomes. The group explored exactly how and when members would like to be involved; methods for communicating with people with dementia; identifying and prioritising topics for investigation; and was involved in designing and evaluating the content and form of available outcome measures.

The user group has successfully involved older people with dementia and their carers in the research process. It has guided the development of research tools, and ensured that the voice of people with dementia is directly incorporated in the research project.

Funding issues will be addressed.