Patient and Public Involvement (PPI) is a critical component of dementia research and advocacy. By empowering people with dementia and their families, PPI ensures that research, policies, and interventions reflect the perspectives, views, concerns and worries of those who are most affected. Recent research published by a Canadian research team on 6 September in the journal Research Involvement and Engagement delves into the motivations of family carers who participated in the Strategic Guiding Council (SGC) of the Family Carer Decisions Support study. This international group of family carers was initially recruited to provide insights into improving palliative care for people with advanced dementia.
Through in-depth interviews with ten family carers part of the SGC, the researchers identified three key motivations for these carers to engage in PPI activities. Firstly, the carers valued the opportunity to learn from each other and from healthcare professionals. Secondly, they were driven by a desire to share their experiences and provide support to others. Thirdly, they aimed to use their collective voice to advocate for improved end-of-life care. Overall, this study underscores the significant impact that PPI can make. By involving family carers in research and decision-making, PPI can help improve the quality of care and support for people with dementia and their families, develop more relevant and effective interventions, and foster a more inclusive and compassionate healthcare system. It can also empower individuals to further advocate for their rights and needs.