Public and Participant Involvement as a Pathway to Inclusive Dementia Research

A new paper by ATRI Program Administrator Sarah Walter, MSc, Public and Participant Involvement as the Pathway to Inclusive Dementia Research, has just been published in the Alzheimer's & Dementia Journal. The paper was developed by a group of researchers and community members and provides tools for researchers to address the urgent priority of inclusive dementia research. 

Communities that have been most impacted by dementia do not typically make up their share of people involved in research. Public and Participant Involvement (PPI) is the pathway to science that involves people from these under-engaged communities. PPI can improve every type of research, whether the focus is on health care, social services, or clinical trials testing new medications.

A group of researchers and community members worked together to write a position paper with the goal of helping researchers understand how to best partner with communities.

Before researchers engage in communities, it is important for them to understand the stigma, or negative effects, that older people experience just because of their age. This is much worse for older people who also have a diagnosis of dementia. People with a dementia diagnosis are fighting these negative ideas with a simple and strong message, “I am still here”. The impact of stigma is greater for people who have dealt with discrimination for their entire lives because of their skin color, their religion, their gender identity, or abilities. Researchers must take time to first educate themselves. They can begin by asking community members, “What are your needs? What are the biggest issues impacting your health and your community?” These discussions must be bidirectional, and researchers must be prepared to transparently respond to questions.

“Community members may ask of researchers, ‘Why should I trust you? You need to establish a relationship; a dialogue; I getting to know you and you getting to know me’.”

The best partnerships are built by involving communities in every step of research. This is illustrated in the diagram: Public and Participant Involvement in the Research Cycle.

In Step 1, Community members can guide researchers to understand what are the most important issues that research can help to address. In Step 2, community members can guide how research is done. This could include deciding how to invite people to research, and developing materials together with researchers that describe the study. Steps 3 and 4 involve community members in collecting and making sense of the data. In Step 5, sharing what is learned is an important place for communities to be involved. They can ensure the information reaches everyone and that all communities can benefit from new learnings. Step 6 is another important role, where what is learned from the research results in changes to health care or social care, including policy changes. Finally, Step 7 is where community members help researchers understand how being involved in the research made a difference, for themselves as well as for their community.

The authors also developed recommendations for how to create and maintain close collaboration between researchers and participants through PPI (see table below). There are practical ways that researchers can build trusting relationships with community members. To build truly equal partnerships with communities, researchers must take the time to listen and understand the day-to-day challenges people are dealing with. This is very important for communities that don’t have equal access to health care or social support. Meaningful partnerships are built on choice, respect, shared decision-making, access, inclusion, and representation.

In conclusion, inclusive PPI upholds the dignity and rights of study volunteers and offers clear benefits to research. Our shared goal for dementia research is best captured by the perspective of community members.

“We want to see dementia research accelerate and provide meaningful benefits to their lives, the lives of their loved ones, their children, and their communities. We seek to be seen, valued, and treated always as a person first."