Patient and Public Involvement

Two members of the team have experience of caring for a relative or close friend with advanced dementia and will play an important role in the design of patient information, promotion of the trial and in the analysis of data

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Kick-Off Meeting

Members of the NAMASTE Trial Project gathered at Lancaster University on the 20th December 2016 for the inaugural 'Kick-Off' meeting

PPI Contributors: Anne Davidson Lund and David Scott
PPI Contributors: Anne Davidson Lund and David Scott

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 have 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 have brought together a small group of other carers who can help with the running of the study.

This group will take on various roles but will be particularly helpful in designing any information given out to relatives in the care home particularly information sheets. They may also help us go into the care homes and discuss the trial with relatives and staff to help people see why a study is important. They will also be kept informed of analysis of data as we go along to check whether the research teams are missing anything.