​​Meaningful engagement and partnerships in research with people living with dementia and their family

​​Domenica Disalvo   BMedSci(Hons), PhD​

​​Centre for Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), ​Faculty of Health, University of Technology Sydney​

​​Co-design is an emerging methodology in research that acknowledges the value of lived experience and collaborative partnerships in designing services and systems of care. In the co-design process, all stakeholders are regarded as experts, and strategies are implemented to eliminate potential inequalities, ensuring an open, empathetic, and responsive environment. The impact of co-designing on research outcomes, particularly with people living with dementia (PLWD), is substantial. Involving people with dementia and their family carers in the codesign process leads to a better understanding of their needs, preferences, and experiences, resulting in more effective and meaningful outcomes aligned with their lived realities. 

​"Every research initiative involving PLWD should include those people and the services that support them. Not only does this ensure that the initiative is meaningful, desired, and required, but also feasible to deliver." – Dr Tom Morris, Head of Research & Information Excellence - HammondCare 

​Despite these benefits, as an Early Career Researcher, I have encountered the practical challenges of engaging PLWD in the complex and often rigorous approaches required to meet key co-design principles. PLWD may vary in their ability to engage in these research processes due to their emerging cognitive limitations and difficulty expressing preferences. I have learnt the importance of being flexible and creative and exploring alternative ways of communication and engagement with PLWD, to suit the varying needs and participant's abilities. For example, while I had initially only planned to run workshops to allow all stakeholder participants 'a voice,' I learnt that some PLWD did not feel comfortable engaging in research in that way. Instead, providing an additional avenue for people living with dementia to share their voice meant sending a hard-copy questionnaire through the mail so that they could take their time responding, in the safety and comfort of their own home. I then fed their questionnaire responses into the following scheduled stakeholder workshop. 

​"The hesitancy around involving people living with dementia in research is often fuelled by a sense of discomfort in collaborating with someone with reduced cognitive function; this means that those who would like to contribute are often denied this opportunity. The research is poorer without the lived experience input…dementia by its very nature produces unique responses and unique rates of cognitive decline, because each person living with dementia experiences a unique journey." – Imelda Gilmore, Dementia Advocate 

​I have also learnt the importance of family carers, who are often advocates and can contribute to a more respectful and inclusive research process. They have provided invaluable insights into the preferences and care needs of people living with dementia during initial workshops, which have clarified research directions. Family carers also play an important role during interviews with people living with dementia, helping to navigate communication challenges and providing a supportive environment for the person living with dementia to feel safe in collaborating and sharing their voice. To understand the care needs of PLWD, researchers must participate in education and training to develop dementia awareness, collaborate with experts, and foster partnerships with advocacy groups and associated community care organisations. 

​Partnering with people living with dementia in the co-design process means researchers must take their time to respectfully explore all the ethical considerations, including capacity issues and appropriate informed consent procedures, provide clear information, involve family or guardians when necessary while respecting autonomy, and prioritise the comfort and dignity of the PLWD throughout the research. Overall, embracing all stakeholders' diverse perspectives and expertise in co-design processes enriches research and ensures more effective, person-centred outcomes.​

*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care.