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CHICAGO, November 14, 2024 — A group of researchers and community members worked together to write a position paper to help researchers understand how best to partner with communities to encourage and advance dementia research that is inclusive and brings in people from all walks of life.
“Public and Participant Involvement as a Pathway to Inclusive Dementia Research” by Sarah Walter, MSc, Program Administrator, Alzheimer’s Therapeutic Research Institute, Keck School of Medicine of USC and the Alzheimer’s Clinical Trials Consortium, was published online today by Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association.
In the paper, Public and Participant Involvement (PPI) is broadly defined as “conducting research with or by the public; rather than to, about, or for them.” PPI involves a collaborative relationship, rather than only interacting with participants to collect data.
Walter says PPI can improve every type of research, whether the focus is on health care, social services, or clinical trials testing new medications. The emphasis is to incorporate the involvement of study participants across the entire research cycle.
“The field of Alzheimer’s and related dementias (ADRD) urgently requires inclusive research to ensure that the priorities and outcomes of research apply to those most impacted,” Walter said. “For example, communities that have been most impacted by dementia do not typically make up their share of people involved in research. PPI is a pathway to science that welcomes people from all communities.”
By partnering closely with communities, researchers can understand where obstacles exist and further prove themselves as trusted partners. It’s important for researchers to understand the stigma of aging, which is much worse for those with a diagnosis of dementia. The impact may be even greater for people who have dealt with discrimination for their entire lives because of their skin color, religion, gender identity, or abilities.
“To foster true collaborations between communities and researchers — that are mutually beneficial, respectful, and built on trust — researchers must consistently invest in communities by honoring their expertise and listening to their lived experiences that shape and inform diverse aging pathways,” said Crystal M. Glover, Ph.D. “This mutual understanding and partnership can serve as the foundation for equitable and impactful dementia research and care. We hope this paper is a helpful tool to stimulate researchers to meaningfully engage with people that have lived experience of Alzheimer’s disease and all other dementias.”
Glover, who is a senior co-author on the paper, is an applied social psychologist and mixed methodologist at the Rush Alzheimer’s Disease Center, and an Associate Professor of Psychiatry and Behavioral Sciences (and) Neurological Sciences in Rush Medical College. She is editor-in-chief of the journal Alzheimer’s & Dementia: Behavior & Socioeconomics of Aging (A&D: BSEA).
Walter worked closely with five community members to write the paper. Based on these discussions they recommend: “Researchers must take time to first educate themselves. They can begin by asking community members, ‘What are your needs?’ and ‘What are the biggest issues impacting your health and your community?’”
Trust is an essential and invaluable part of research participation. Ongoing discrimination and lack of access to high-quality health care continue to stand in the way of trust building. For example, researchers interested in inclusive research also must be prepared to transparently respond to questions. Community members may ask researchers: “Why should I trust you?”
The authors of the new paper say that the best partnerships are built by involving communities in every step of the research process, such as:
- Guiding researchers to understand the most important issues that their research can help address.
- Deciding how to invite people to research, and developing materials together with researchers that describe the study.
- Collecting and making sense of the data, and sharing what is learned. Community members can help ensure the information reaches everyone.
The authors emphasize that meaningful partnerships for inclusive dementia research are built on choice, respect, shared decision-making, access, inclusion, and representation. They propose more researchers embed public voices into the research process as a path towards increasing the odds of successful and sustained engagement with research participants, especially those in underserved communities, which could lead to greater involvement in research.
This position paper was led by the Partnering with Research Participants Professional Interest Area (PIA) of the Alzheimer’s Association International Society to Advance Alzheimer’s Research and Treatment (ISTAART). Co-authors include professional researchers together with five community members from five countries (The Netherlands, Ireland, United Kingdom, Australia and the United States) with lived experience of ADRD and PPI research.
Another senior co-author on the paper, Ríona McArdle, Ph.D., reflected, “It has been a privilege to involve people affected by dementia through all the different stages of my research, and together we tackle challenges that are a priority to people living with this condition. I have been guided by the UK Standards for Public Involvement, but I realized that, internationally, dementia researchers weren’t speaking the same language when it came to public participant involvement. I am grateful to have been part of this international effort with both researchers and people with lived experience to co-produce a common set of principles and guidance. This will support researchers internationally to keep people with dementia at the heart of our work.”
McArdle is a National Institute of Health and Care Research (NIHR) Advanced Fellow within the Translational and Clinical Research Institute at Newcastle University, UK. She also is the Public Patient Involvement and Engagement Lead for the Digital Health, Ageing Innovation and Inclusion Theme within Newcastle’s NIHR Biomedical Research Centre.
Throughout the article, there are direct quotes from community members with vital perspectives relating to key topics. Nancy Meserve, who is a participant in a clinical trial, concludes the paper with this: “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.”
Rebecca M. Edelmayer, Ph.D., Alzheimer’s Association vice president of scientific engagement, recognizes that “inclusive science will always be better science, and through these approaches and by incorporating these recommendations into our work, we have the greatest potential to create a transformational impact across all communities.” Edelmayer and Claire Sexton, DPhil, of the Alzheimer’s Association, are co-authors of the newly published article.
Recommendations for Public and Participant Involvement (PPI) in ADRD Research
- Establish a partnership with choice and shared decision making.
- Ensure equal access.
- Start early, but it’s never too late to engage.
- Ensure representation and respect differences.
- Discuss and define terms, titles, and roles.
- Encourage storytelling.
- Share impact.
- Demonstrate appreciation.
- Offer training to support co-learning.
- Listen and keep listening.
- Respect confidentiality and privacy.
- Demonstrate long-term commitment.
About the Alzheimer’s Association
The Alzheimer’s Association is a worldwide voluntary health organization dedicated to Alzheimer’s care, support and research. Our mission is to lead the way to end Alzheimer’s and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer’s and all other dementia®. Visit alz.org or call 800.272.3900.
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