Involving people with dementia in research


It is essential that patient and public involvement (PPI) is conducted in such a way that it promotes a meaningful and active involvement of people with dementia in research and represents a true partnership between people with dementia, researchers and, when appropriate, policy makers and other members of society.

Overview of position paper

There is evidence to suggest that PPI improves the quality, relevance and ethical conduct of research (Edelman & Barron, 2015). Increasingly, it is recognised as “essential for all stages of high-quality research” (Daveson et al., 2015; Poland et al., 2014). In some countries, it has become a central element of government policy and an ethical requirement for health research (Department of Health, 2005; Iliffe et al., 2011). Nevertheless, there is very little information about the specific involvement of people with dementia in research (Di Lorito et al., 2016). 

A number of studies have been undertaken in recent years which have explored both the benefits and challenges of actively involving people with mental health issues in the research, evaluation, and service improvement. Researchers have a legal and moral obligation to protect not only participants but everyone involved in the research process from harm whilst striving to ensure that the process and outputs of PPI are successful, meaningful and mutually beneficial. Alzheimer Europe’s aim in writing this position paper on PPI and dementia was to reflect on the challenges and potential risks and benefits associated with the meaningful involvement of people with dementia in research conducted by Alzheimer Europe or in collaboration with external researchers. It is also important to the development of dementia-related policies across Europe.

The full position can be downloaded below.