Is patient and public involvement worth incorporating into dementia research?

Public involvement in research involves research being carried out by or with members of the public, such as the incorporation of individuals with dementia in dementia research. This contributes to a better understanding of those affected by a condition and widened scientific knowledge and perspectives.

As these individuals are experts on the experience of living with this condition, it can provide researchers with a better understanding of the daily impact of dementia, and enable researchers to develop new skills and decrease any stigma associated with this disorder.

However, there are some limitations associated with participatory research. Additional time, training, effort and planning are required to incorporate individuals with dementia into the research process. Furthermore, there are ethical concerns due to communication restrictions and behavioral changes that occur as a result of cognitive impairment caused by dementia.

Although participatory research appears to be important in broadening scientific perspectives, the impact on the parties involved needs to be investigated further.