Patient & Public Involvement
Research needs to reflect the real needs that people experience. This is sometimes referred to as Patient and Public Involvement (PPI) in research. To this end, we included people with experience of caring for a relative or close friend with advanced dementia throughout the study design process and carrying out the research. Anne Davidson Lund and David Scott both cared for a relative with dementia and joined our team through their work with the Alzheimer’s Society Research Network. Together with Dr Nancy Preston they brought together a small group of other carers who helped with the running of the study.
This group took on various roles and were particularly helpful in designing any information given out to relatives in the care home, particularly information sheets. They also helped us go into the care homes and discuss the trial with relatives and staff to help people see why a study is important. They were also kept informed of analysis of data as the trial progressed to check whether the research teams were missing anything.