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Received: 14 August 2024 Revised: 26 September 2024 Accepted: 28 September 2024
DOI: 10.1002/alz.14350
PERSPECTIVE
Public and participant involvement as a pathway to inclusive
dementia research
Sarah Walter1RÍona McArdle2Emily A. Largent3Rebecca Edelmayer4
Claire Sexton4Sandra Loyola Sandoval5Helen Medsger5Nancy Meserve5
Roland Samaroo5Cynthia Sierra5Marlon M. P. Smeitink5Allison Gibson6
Sarah Gregory7Diana Karamacoska8Iracema Leroi9Doris Molina-Henry1
Aida Suarez-Gonzalez10 Crystal M. Glover11,12,13
1Alzheimer’s Therapeutic Research Institute, University of Southern California, San Diego, California, USA
2Newcastle University, Newcastle upon Tyne,UK
3University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA
4Alzheimer’s Association, Chicago, Illinois, USA
5PPI Member, San Diego, California, USA
6Saint Louis University, School of Social Work, St. Louis, Missouri, USA
7Edinburgh Dementia Prevention, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK
8NICM Health Research Institute, Western Sydney University, Penrith, New South Wales,Australia
9School of Medicine and Global Brain Health Institute, TrinityCollege Dublin, Dublin, UK
10Dementia Research Centre, UCL Queen Square Institute of Neurology, London, UK
11Rush Alzheimer’s Disease Center, Rush Medical College, Chicago, Illinois, USA
12Department of Psychiatry and Behavioral Sciences, Rush Medical College, Chicago, Illinois, USA
13Department of Neurological Sciences, Rush Medical College, Chicago, Illinois, USA
Correspondence
Sarah Walter, Alzheimer’s Therapeutic
Research Institute University of Southern
California, 9860 Mesa Rim Road, San Diego,
CA 92121, USA.
Email: waltersa@usc.edu
Funding information
National Institute for Health and Care
Research, Grant/AwardNumber: 30167;
Biomedical Research Centre; Alzheimer’s
Clinical Trials Consortium (ACTC) National
Institute on Aging (NIA); National Institutes of
Health, Grant/AwardNumber: U24AG057437
Abstract
The field of Alzheimer’s disease and related dementias (ADRD) urgently requires inclu-
sive research to ensure the priorities and outcomes of research apply to those most
impacted. We postulate public and participant involvement (PPI) as a pathway to
achieving the best science, both in research that informs health and social policy as
well as in therapeutic studies to treat and prevent ADRD. This position paper aims
to provide dementia researchers with evidence to understand how to apply PPI. We
begin by highlighting the disparities experienced by people with dementia, including
ageism, stigma of cognitive impairment, and health disparities for minoritized com-
munities. We then provide examples of PPI in ADRD across the research lifecycle,
from defining research topics of priority to those impacted by ADRD, through the
design, analysis, dissemination, and translation to policy and practice. We also pro-
This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided
the original work is properly cited.
© 2024 The Author(s). Alzheimer’s & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer’s Association.
Alzheimer’s Dement. 2025;21:e14350. wileyonlinelibrary.com/journal/alz 1of12
https://doi.org/10.1002/alz.14350
2of12 WALTER ET AL.
vide recommendations to create and maintain collaboration between researchers and
communities through PPI.
KEYWORDS
community engagement, person-centered research, public and patient involvement
Highlights
∙A central premise of public and participant involvement (PPI) is collaborative
relationships between researchers and community members.
∙To build equitable partnerships, researchers must acknowledge and understand the
context of research. This includes ageism, the stigma of dementia, and ongoing
discrimination for many minoritized communities.
∙Meaningful partnerships include choice, respect, shared decision making, access,
inclusion, and representation. Notably, we recommend that researchers begin
partnerships early in the research process and share the impact of PPI on research.
1INTRODUCTION
Alzheimer’s disease (AD) and related dementias (ADRD) represent an
urgent health need with a growing global impact as the number of peo-
ple living with ADRD is expected to increase to 155 million by 2050.1,2
People living with dementia exist within a widening chasm of heath
disparities, particularly for individuals who have been minoritized due
to race, ethnicity, immigration status, gender and sexual identity, reli-
gion, and socio-economic status. Currently, it is largely unknown how
and what people affected by ADRD think about aging and dementia
and the role research can play in alleviating burdens associated with
ADRD. Without insights from those with lived experience,the research
that informs our knowledge—from psychosocial and resilience fac-
tors to biomarker and drug discovery—will remain incomplete and
inequitable.
In general, research studies do not critically examine or incorpo-
rate perspectives of people living with an ADRD diagnosis, those at
higher risk for developing ADRD, or their support partners. Follow-
ing classic research methodologies that emphasize separation between
researchers and participants to minimize bias (i.e., positivism3), it is
common for researchers to design a study, obtain necessary fund-
ing, and begin to recruit study participants—all without acknowledging
and understanding prospective participants’ lived experience. The
lack of these perspectives become glaringly evident once study chal-
lenges occur, such as slow recruitment, poor retention, and lack of
representation among those enrolled.4,5 Here, we argue that pub-
lic and participant involvement (PPI) will not only address practical
challenges6but also inform a fuller understanding of ADRD, and to
ensure relevance of research results.
PPI is broadly defined as “conducting research with or by the pub-
lic; rather than to, about, or for them.”7,8 PPI involves a collaborative
relationship, rather than only interacting with participants to col-
lect data. Effective use of PPI improves the relevance and quality of
research by incorporating the perspectives and lived experiences of
those affected.7,9 Partnerships between researchers and participants,
built through PPI, can ensure that research findings are meaningful and
serve those individuals and communities most impacted by dementia.
People with lived experience of ADRD have expressed their willing-
ness to contribute but uptake by researchers has been sparse.10–12
When PPI is used in ADRD research, a key limitation has been the
lack of representativeness among the patients and members of the
public included. We postulate that PPI should be a central tenet of
ADRD research, and that use of PPI can enable researchers to actively
work toward health equity13,14 by intentionally partnering with com-
munities who have been underserved by and underincluded in ADRD
research.15,16
2PURPOSE
This position paper aims to equip ADRD researchers—from bench
scientists to trialists, from epidemiologists to care researchers—with
the need for and application of PPI. Frameworks for research part-
nerships using PPI are varied, with multiple models demonstrating
meaningful impact.17 Our aim is to empower researchers to actively
develop a framework to best serve their research as well as the
communities in which they partner. To do so, we first outline the
marginalization of persons living with dementia which underlies where
research occurs. We then discuss how researchers can acknowl-
edge these disparities, include PPI, and develop and sustain com-
munity partnership. We provide examples of effective PPI across
all stages of research—from conceptualization to dissemination and
translation. Finally, we discuss key considerations for inclusive ADRD
research.
WALTER ET AL.3of12
3METHODS
This position paper was led by the Partnering with Research Par-
ticipants Professional Interest Areas (PIAs) of the Alzheimer’s Asso-
ciation International Society to Advance Alzheimer’s Research and
Treatment (ISTAART; alz.org/ISTAART). Co-authors include profes-
sional 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. Co-authors drafted and reviewed manuscript drafts by e-
mail, including three video conference meetings with community
members to discuss the paper’s emphasis and approach. All co-
authors provided insights on terminology and inclusion of lived
experience. We have included direct quotes (in italics) from Partner-
ing with Research Participants PIA community members to amplify
their voices and illustrate their expertise. A lay summary of this
paper has also been co-developed to be disseminated to community
members.
Foundational to this position paper was a collaborative discussion
and consensus on key terminology. The following are key terms and
how we have agreed to use them. Co-authors aimed for terms to
acknowledge systematic exclusion, offer opportunities for inclusion,
and to be globally relevant.
∙Public and Participant Involvement (PPI) is an umbrella term for inclu-
sion of diverse perspectives and lived experiences in the research
process. PPI is also referred to as public and patient involvement;18
however, as ADRD research includes non-patient partners such
as individuals living with elevated risk19 without cognitive impair-
ment and support partners, “participant” is viewed as more
inclusive.
∙Researcher refers to individuals who professionally conduct and
engage in research, not limited to faculty members or principal
investigators.
∙Person living with or affected by dementia refers to individuals
diagnosed with or at risk for ADRD. This person-first language
emphasizes the individual over their diagnosis or disease risk.
∙Support partner refers to those who assist and provide care for a
person living with dementia.
∙PPI member refers to a member of the public, a person living with
or affected by dementia, or a support partner who engages with
researchers in PPI.
∙Marginalized communities refers to groups that are underserved or
underengaged in research and health-care settings due to any or
intersections of the following: age, sex, race, ethnicity, country of ori-
gin, religion, socioeconomic status, geographic location, sexual and
gender identities, and disability status.20,21 Here we define commu-
nity as “a group of people with diverse characteristics who are linked
by social ties, share common perspectives, and engage in joint action
in geographical locations or settings.”22
4MARGINALIZATION OF PERSONS LIVING
WITH DEMENTIA
Individuals living with dementia experience social exclusion on multi-
ple levels, including interpersonal relationships, local communities, and
more broadly in the institutions and systems of social and health care.
Ageism contributes to this marginalization for a majority of those living
with dementia.23 Intersecting with ageism is the stigma of a dementia
diagnosis. Fear of stigma may lead individuals and support partners to
underreport symptoms and delay seeking a diagnosis, and clinicians not
communicating a diagnosis to individuals and families.24 As stigma is
rooted in lack of knowledge, the evolving definition of AD25 may lead
to greater confusion and more stigma.26,27 People living with demen-
tia have pushed back against the dehumanizing impact of stigma with a
simple but powerful statement; “I am still here.”28–30
Ageism and dementia stigma are compounded for individuals who
have experienced life-long discrimination due to their race, ethnic-
ity, gender identity, ability, and socioeconomic status.31 Evidence
of this impact includes lower rates of diagnosis, poor social sup-
port, low quality of care, and higher financial burden for minori-
tized communities.13,24,32–35 Work done in low and middle income
countries has shown that PPI can have broader impact on commu-
nities, including changing attitudes about research and dementia.36
The marginalization of individuals with learning disabilities must
also be considered. Adults with Down syndrome have a higher
than 80% risk of developing AD by their mid-50s.25,37,38 These
health disparities are upheld by systems and are well documented
globally.24,39
We set forth that marginalization of people with dementia com-
pounds with other causes for health disparities and is not an anomaly
but the current state of health care and related research. Decisions
to engage in research are both specific to the individual and deeply
rooted in the broader context.13 Before engaging in PPI, researchers
must first actively educate themselves and acknowledge the struc-
tures that underpin disparities, including both historical and ongoing
unethical research practices.40 Researchers, whatever their personal
ethos, are representatives of medical and academic systems that
actively and passively perpetuate inequity, injustice, and racism.33
These systems have deleteriously impacted the very communities
in which researchers most require partnerships to design inclusive
research.
Hence, it is critical that researchers approach communities with the
primary aim to learn about these groups.41 Researchers must begin
by asking community members, “What are your needs? What are the
biggest issues impacting your health and your community?” These dis-
cussions must be bidirectional, and researchers must be prepared to
transparently respond to questions. One of our community member
co-authors explained, “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.’”
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FIGURE 1 Public and participant involvement (PPI) in the research cycle. Modified from the UK National Institute on Health Research8
5PUBLIC AND PATIENT INVOLVEMENT
THROUGHOUT THE RESEARCH PROCESS
Effective use of PPI adds value to every step of research. We turn now
to describe examples and review approaches throughout the research
cycle, as illustrated in Figure 1.
Step 1. Identifying and prioritizing research topics
and aims
Individuals living with dementia have espoused the desire to be
involved in research from inception.12,42 Many funding organiza-
tions now require that researchers demonstrate PPI in the devel-
opment of the research question and initial design.43–45 Identifying
and prioritizing research topics requires a bi-directional exchange
of knowledge—combining empirically identified researchers’ priority
areas with PPI members’ perspectives.17,42,46 This is an iterative pro-
cess, and may not always lead to consensus; differences should be
acknowledged with mutual respect and decisions should be commu-
nicated transparently.47 PPI members can challenge assumptions held
by researchers and bring pragmatic questions and solutions, lead-
TAB L E 1 ActivDem research aims prior to and after public and
patient involvement (PPI).
Initial research aims PPI-refined research aims
1. Identify modifiable
influences of physical
activity in people living with
dementia.
1. Identify psychosocial
characteristics in people
living with dementia and
their support partners which
predict habitual physical
activity change in dementia.
1. Examine whether changes in
physical activity can help
predict who will lose their
independence faster, and if
staying physically active can
slow this down.
1. Identify how social support
and health care nationalize
impact habitual physical
activity change in dementia.
2. Examine whether decline in
habitual physical activity
reflects decline in functional
independence in dementia.
ing to improved clarity and accessibility.47 For example, the research
questions of the ActivDem study were co-designed by people living
with dementia, who emphasized the role of their support partners in
facilitating physical activity (Table 1). This collaboration resulted in
research questions and methodology adapted to include an exploration
WALTER ET AL.5of12
of support partners’ psychosocial well-being and care management
strategies.48
Practical support of PPI members is essential to facilitate co-
development and refinement of research questions. Recommendations
include providing a group with peers, adequate time to prepare, pro-
viding a pre-meeting to allow time to digest issues and study, as well
as a time to answer questions either as a group or one to one.47,49
Safe spaces must be provided to allow PPI members the freedom to
express opinions and perspectives.47 Meaningful results will depend
on whether researchers are able to build trusting relationships and
provide flexibility in engagement options.50 “The design of researchques-
tions built on patient and public involvement in a partnership of mutual
trust, shared expertise and the lived experience of those with ADRD and
their care partners,” one community member co-author said, “is likely
to significantly advance the feasibility, validity and applicability of such
research.”
Step 2. Designing research proposals and methods
PPI during the proposal development stage can ensure that research
is undertaken in a meaningful and targeted manner, using cultur-
ally competent methods. Ideally, this would include PPI members as
co-applicants and members of the study team. PPI advisory boards
have also been established, guiding research design, conduct of stud-
ies, governance, and management.51 Feedback from these groups has
emphasized the importance of sharing individual research results (i.e.,
cognitive scores, magnetic resonance imaging results, genetic or amy-
loid results), with guidance on how sensitive results can be shared.52,53
The input of PPI on study methods can ensure meaningful outcome
measures are used.36 A pan-European consultation found that people
living with dementia want to participate in interventions focused on
outcomes such as well-being, social participation, and human rights,
highlighting a need for significant improvements in research focus-
ing on these meaningful outcomes.54 In the UK, a National Institute
for Health Research project combined a literature review with expert
consensus and PPI input to identify core outcome measures in disease-
modifying trials which are meaningful to patients.55 In the United
States, the National Institute on Aging’s Imbedded Pragmatic AD and
ADRD Clinical TrialsCollaboratory Lived Experience Panel was formed
to advise the development of pragmatic clinical trials. Their feed-
back emphasized the importance of personhood and relationship over
logistics.56
Prior PPI work has resulted in both practical guidance,57 problem
solving and development of communication tools,58 and innovative
methods to engage.59 A recent review identified community outreach
as an ADRD research recruitment and retention strategy to engage
minoritized communities, which could be bolstered using community-
led initiatives.13 One successful example was the co-design of a
culturally informed storytelling campaign for research with PPI mem-
bers from the Black community, which was well receivedby community
members.60
Step 3. Research conduct and management
Research studies in ADRD oftentimes take >1 year to conduct, neces-
sitating research that responds to a changing context. A key example
of the benefits of PPI in this stage is the support a PPI advisory
group can bring to mitigate study recruitment challenges. PPI mem-
bers can problem solve and suggest initiatives to enhance recruitment,
including reviewing study materials, connecting the researchers with
community leaders, or suggesting feasible alterations to the eligibility
criteria. Study procedures may need to be adjusted to accommodate
newly emerging tools, like blood-based biomarkers, or newly approved
medications. A PPI advisory group can play an important role in
developing participant-facing information, including the presentation
of risks and unknowns regarding drug trials and other pharmacolog-
ical or invasive therapies in an understandable manner to support
true informed consent. Researchers can work with PPI members to
determine what compensation for research participation would be
appropriate, and what incentives should be offered to express grati-
tude to research participants. Depending on the needs and interests of
the community, reimbursement and incentives may be both financial
and non-monetary (e.g., sharing individual research results or having
access to high-quality information).61 PPI members can also be trained
to assist with data collection. Crowd-sourced data collection or “citi-
zen science” was used for the first time in an AD research project called
“Stallcatchers,” the online participation of volunteers on the online
game reduced the time required to analyze data.62
Step 4. Research analyses
Here, data analyses are most effective when PPI members have input
on design, outcomes, and conduct. Offering community members train-
ing and context for analysis will ensure equal contributions and the
best-informed collaborative decisions. In this step, it is the researcher’s
role to use their methods (whether quantitative or qualitative) to
conduct the analysis and outline the results and to offer an inter-
pretation of what the results mean. It is the PPI member’s role to
validate or disagree with that interpretation and ideally, to discuss and
co-develop an interpretation. PPI in analysis may help to focus the
researcher on what is meaningful to people with lived experience, while
avoiding erroneous assumptions about the meaning of results, espe-
cially when situational or cultural context is needed. Secondary data
analysis, which leverages data collected for other purposes (e.g., tran-
scripts from lived-experience interviews or health-care datasets) when
analyzed in partnership with PPI, could allow for better use of data
and expanded understanding of the results.63 In a meta-ethnography
of studies of walking, PPI was a critical piece of the analysis and
development of a conceptual framework.64 An additional benefit of
using participatory analysis approaches is the outcome of more inclu-
sive data visualization,65,66 which could enhance understanding of
both professional and general audiences when disseminating research
findings.
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Step 5. Dissemination of findings
Researchers are required to publish outcomes in scientific journals
and present at scientific conferences to fulfill funding requirements
and maintain their academic positions and typically lead dissemina-
tion of research results. Co-authorship of scientific publications is an
under-used method that can ensure the voices and perspectives of
PPI members who contributed to new learnings are heard in unison
with the voice of the researcher. One example is a call for inclusive
design of indoor/outdoor spaces for people living with a diagnosis of
dementia, emphasizing citizenship and human rights.67 Co-authorship
of scientific papers can lead to a call for change in research culture,
as seen in a recent example in which research participants initiated a
bill of rights for sharing individual results in research.68 Researchers
should discuss with PPI members the information the community
needs and how to best disseminate new learnings. Additionally, jour-
nals can provide an open access community briefing section that
distills the findings in an accessible way. A community member co-
author stated, “Having the opportunity to be informed and knowledgeable
to share within your community is powerful. It allows for discussions
to be had in everyday life and engage others in what you are learning.
Which may in return spark an interest in someone else to take part in
research.”
PPI in scientific conferences is not commonly practiced,69 either
in ADRD or other specialty fields, with few published instances.70,71
A conference program that included research participants in ADRD
scientific conferences found that community members prefer full,
unfiltered access to scientific content, and discovered inspiration in
being included in scientific discussions.11 PPI doesn’t have to be lim-
ited to listening. Co-presentation is another PPI avenue that ensures
recognition of PPI members in the research process and allows
for lived experience to be included in the discussion, providing a
richer context for the audience.66 Partnerships can be built in these
forums, as in the case of this paper when co-authors met during
a session for the Alzheimer’s Association International Conference
(AAIC).
Dissemination of research findings can extend beyond scientific
conferences and publications to public engagement events, blogs,
webinars, and other media efforts. For example, sharing personal expe-
riences was the primary motivator for Asian Americans and Pacific
Islanders (AAPI) joining the Collaborative Approach for AAPI Research
and Education (CARE) registry for dementia-related research.72 Story-
telling is a powerful tool for promoting more positive messages about
dementia and the research experience. This has become the central
tenet of nationalized, citizen-led recruitment services such as Join
Dementia Research in the UK,73 and StepUp for Dementia Research
in Australia.74 Exemplifying that lived experiences and stories shared
are not the property of researchers, some researchers have partnered
with their participants to develop short films to share the stories of
PPI members,75 create public-facing handbooks, and conduct public
webinars.65,66
Step 6. Implementation of findings
The implementation of findings sits at the intersection of clinical
research and clinical care. It is this interface that communication with
participants must be well planned and well executed to continue to
develop trust in the research process and to provide value to the
participants and the public. Incorporating lived experience of par-
ticipants in clinical trials, including those that ended abruptly, can
improve communications with research participants and care part-
ners, providing information and support for next steps. The Participant
Follow-Up Improvement in Research Studies and Trials workgroup
brought together representatives from academic, industry, govern-
ment, and non-profit AD/ADRD research communities, along with
research participants and study partners, to establish recommenda-
tions for improving communication when trials do not end as planned.
The 17 recommendations developed by the workgroup are not dis-
ease specific and could be used to improve communication and build
partnership with research participants and study partners broadly.76,77
These are the first recommendations of their kind developed for
any therapeutic disease area and are already being implemented
by researchers in industry (e.g., GRADUATE studies—gantenerumab
topline results released78) and academia (e.g., A4 study—solanezumab
topline results released79).
Community members’ perspectives are critical in understanding
what will be most meaningful in terms of potential benefits or risks
assumed when taking next steps to transition and implement new diag-
nostic, therapeutic, or care approaches in real-world clinical practice.
Personal perspectives on what it means to live with ADRD and how
access to new treatments or diagnostics impacts a family can be one
of the most influential reasons cited by government agencies and pol-
icy makers in their decision-making process.80 Committee or advisory
roles in community, national, or international consortia and councils
create opportunities for inclusive PPI in ADRD research, policy, and
care. As examples, persons living with dementia and support partners
have participated in the Advisory Council on Alzheimer’s Research,
Care, and Services for the National Alzheimer’s Project Act (NAPA),
the Food and Drug Administration’s(FDA) Patient Representative Pro-
gram, the World Dementia Council, and in patient advocacy leadership
roles.80 It is also encouraging to see a growing movement within the sci-
entific and medical community in which PPI is being incorporated into
development of clinical decision-making tools, and practice guidelines
to improve the clinical experience for patients and families.
Step 7. Assessing impact of PPI
A final and often overlooked stage of PPI is measuring the impact
of PPI on the research process, outcomes, and individuals involved.
As there is no single best way to measure impact of PPI, we rec-
ommend that researchers evaluate and document the impact on the
research, researchers, and PPI members as the project evolves.66,81
WALTER ET AL.7of12
This includes documenting the recommendations made by PPI mem-
bers, the changes made to the project, and what outcomes were
observed. Multiple assessment tools have been designed for use, which
can be adapted to suit the needs of the research project or program.82
There may also be significant and unmeasured impact of partnership
and how it changes the perceptions and approach of researchers and
PPI members such as shared purpose, passion, and being part of some-
thing larger than oneself. When asked how they would know PPI was
successful, a community member co-author explained, “The researcher
has clearly adapted various aspects of the study and before funding appli-
cations to take into account the experiences and views of the PPI group
members. I also feel that it helps the researcher to talk to us about the study,
to share the problems and feel good about the successes.”
6KEY CONSIDERATIONS
When engaging in PPI, investigators must be aware of a few key
considerations, which, if not considered in partnership with commu-
nity members, can impact the conduct, quality, and outcomes of PPI
research. We discuss four key considerations to address these chal-
lenges. We also summarize recommendations to support meaningful
PPI engagement (Table 2).
Researchers should strive to understand the global, national, and
local context in which research will take place and set up steps to
include marginalized communities in these research partnerships. PPI
members, including those living with a diagnosis and their support part-
ners, should be brought together with people working in professional
dementia services (e.g., clinicians, care professionals) and those with
expertise in specific areas (e.g., researchers, technical experts).46,83 A
careful balance between community members and those with knowl-
edge and/or power must be sought to allow for a true participatory
effort, avoiding single PPI representatives.84 It is through PPI that
the distinct expertise of community members and researchers can be
brought together to advance our understanding of dementia.
6.1 Communication
Communication is foundational to effective PPI, and must be thought-
fully approached. To prepare themselves for inclusive communi-
cation, researchers should consider undergoing cultural sensitivity
training.51 Community members may reference their personal sto-
ries in research-related discussions. Storytelling is a culturally and
linguistically respected means of sharing wisdom and beliefs. Although
some health-care research acknowledges the value of patient stories
as evidence,85 researchers should be prepared to listen and under-
stand stories, to incorporate their value into the research process.
Also key to preparation is setting up the partnership as co-learning,
with researchers receiving training from community members on what
is of value and priority to the community. Early in the process of
engaging with community, researchers should ask PPI members if pro-
viding training to them (e.g., research ethics, methods, and terminology)
TAB L E 2 Recommendations for public and participant
involvement (PPI) in Alzheimer’s disease and related dementias
research.
Establish a partnership with choice and shared decision making.
Ground partnership by valuing the needs, lived experience, and
expertise of the community participants.
Ensure equal access. Ask for input on how to make interactions
effective and accessible, including how group is structured, and
settings for interactions.
Start early, but it’s nevertoo late to engage. PPI input can
influence the focus and priorities of research, so it’s best to start
partnerships early in the process of research.
Ensure representation and respect differences. Be intentional in
composing your group, ensuring voices not commonly heard are
given space. Avoid single representatives or scenarios in which PPI
are outnumbered by researchers.
Discuss and define terms, titles, and roles. The language we use
demonstrates partnership, discuss with the community, and avoid
acronyms and “academic speak.”
Encourage storytelling. Storytelling is a legitimate method of
sharing wisdom, and patient stories are an important piece of
evidence to inform care.
Share impact. Summarize for both community and researchers the
impact of PPI on research and involve PPI in dissemination of
learnings to both general audiences and scientific spaces.
Demonstrate appreciation. Ask what incentives would best show
appreciation, and would be meaningful and helpful, such as a
financial honorarium or a certificate or public acknowledgement;
this will differ across communities.96
Offer training to support co-learning. Training can benefit and
empower both PPI members and researchers, but make sure
training is not a barrier to participation.
Listen and keep listening. Feedback from PPI will clarify
understanding on the part of both researchers and community.
Respect confidentiality and privacy. Assure PPI that their input
will be kept confidential and anonymous.
Demonstrate long-term commitment. Make long-term plans, work
toward short-term goals, plan together with community.
would enhance comfort or be of personal value.86 Researchers should
ask the preferred methods to communicate and offer multiple meth-
ods on a schedule that is best for community. Written materials should
be provided both before and after any in person/video interactions.
Researchers must communicate what is and what isn’t within the scope
of PPI and the project so participants understand what is reasonable to
accomplish. “The researcher needs to be clear what is required,” one com-
munity member explained. “It needs to be made clear to contributors that
whilst they will be contributing their experience, it’s not all about them.. ..It
is also important that the researcher does what they say they will do and that
they keep in touch even if it’s just a short ‘catch up’ e-mail between e-mails.”
Throughout the relationship, researchers should avoid the use of
acronyms, jargon, technical terms, and academic language that may be
unfamiliar to community members. One guide for dementia-friendly
language, developed by people with lived experience for the Global
Brain Health Institute (GBHI), recommends use of terms that are
8of12 WALTER ET AL.
centered on personhood that are culturally appropriate.87 The Cana-
dian Consortium on Neurodegeneration in Aging (CCNA) co-developed
tips for involvement of people with lived experience of ADRD in
meetings.88 Before, during, and after research, investigators must
query PPI members to ensure that their message is being received and
understood in the way it was intended. Meaningful and consistent com-
munication will ground the partnership. “There is a lot of communication
in a working PPI model.”
6.2 Personal and shared trauma and stigma of
living with dementia
Participating in PPI requires considerable time and both emotional and
cognitive investment. A person living with a diagnosis of dementia is
facing a fatal disease. For many support partners, taking part in PPI
means less time with their loved one. PPI members may also be tak-
ing part in a research study, which can add burden. These physical and
emotional investments must be acknowledged and honored for what
they are: a gift provided by someone with finite time.
Persons living with or at elevated risk of ADRD are aware of the
significant public stigma of ADRD as well as the potential for dis-
crimination in myriad settings.89 This stigma compounds disparate
treatment due to ageism and may impact willingness to engage in
research.27,90 “I don’t think we’ve thought about ageism in studies. Ageism
itself is a stigma, and a diagnosis adds to that.” Hence, persons with a diag-
nosis or increased risk for ADRD may feel uncomfortable sharing their
lived experience.
Researchers can demonstrate respect for communities by acknowl-
edging the compounding impacts of dementia stigma for groups that
have also experienced lifelong discrimination.91 This intersectionality
has been highlighted by persons who have identified as sexual and
gender minorities92 and people with Down syndrome.93 Speaking to
this point, one community member co-author explained, “To not ask
is to not see us.” Another said, “Everyone is facing different challenges in
dementia, but there is some common ground. And by getting all those dif-
ferent voices in your PPI member group, you can make steps in dementia
research!”
6.3 Institutional requirements
Researchers operate within their medical and academic institutions
and must abide by specific ethical and regulatory requirements as
well as within funding parameters. If adequate time or support is
not dedicated for PPI, researchers will be unable to develop neces-
sary, meaningful relationships with community members, especially
important when partnering with minoritized communities. Hence, it
is incumbent upon researchers to plan adequately for the effort and
time required, and work with their funders and home institutions to
ensure planning, sufficient funding, and effort is built in to support
long-term community partnerships. Delayed reimbursement for PPI
members paying up front for events or food can be costly to developing
trust. A community member co-author elaborated, “Whilst no one does
PPI work to make money, some recompense for time given is good practice.
However,if the university or other organization is poor at paying expenses in
a timely manner, this can reflect badly on the project.”
Ethics boards may present barriers to building relationships with
communities and should be considered by researchers early in
planning.65,94 Some countries require ethics review before engaging
with community members, which limits ability of community members
to provide early input. Additional ethical review may be requested to
adequately remunerate PPI members for their time. Researchers can
address these issues up front by engaging with institutional research
offices, funding program officers, and communities prior to proposal
submission; defining the inclusion of community engagement as an
explicated and funded aspect of the research process; and defining
PPI as community engagement necessary for equitable study design,
research conduct, and maximum scientific impact for regulatory and
ethics review boards.
6.4 Conflicting understandings, experiences, and
priorities
Persons who decide to engage in research are diverse in their ADRD
experiences. Meaning, a person living with a diagnosis, a person living
with elevated risk, and a person providing support may all have sep-
arate and distinct motivators to engage in PPI that may conflict with
each other. In addition, ADRD research has been largely limited in gen-
eralizability and applicability due to its ongoing exclusion of globally
diverse groups.95 The largest increases of people with ADRD are pro-
jected to occur in lower- and middle-income countries, where medical
care is limited, most people with dementia never receive a diagno-
sis, and a majority of care is provided by unpaid caregivers who are
mostly women and families.96 Use of PPI that includes and balances
these diverse perspectives will ensure priorities for research are deter-
mined by local communities, not externally imposed.36 Researchers
must acknowledge and note these different experiences and priori-
ties to sustain meaningful PPI partnership, working within what people
are able to do, and providing flexibility in levels of involvement; that
is, working collaboratively with PPI members to reach a common
goal that will serve both science and lived experiences. Furthermore,
cognitive impairment may require adaptations to communication and
reduce comfort in group discussions, which can be managed by offer-
ing one-one-one interactions or smaller groups. Additionally, there are
different cultural understandings of dementia. For example,Indigenous
people in North America see dementia as a natural part of the lifecycle,
impacted by physiological, environmental, and psychological factors.97
Thus, communication between researchers and community members
regarding individual beliefs, values, and preferences around dementia
and research is empowering and builds trust. “Assomeonethatiscaring
for my mother, and actively in research, finding a drug would be great, but
my goal is figuring out what is best for her well-being, and how can she have
a fulfilling rest of life while battling this illness, and how can we, her family,
be supported to provide the care she needs.”
WALTER ET AL.9of12
7DISCUSSION
By harnessing diverse perspectives and lived experiences of persons
living with and affected by dementia and support partners, PPI can help
the field of ADRD. PPI can advance equity by getting input needed
to conduct research that is relevant and acceptable to diverse com-
munities, inform recruitment and retention strategies to overcome
lack of representation, confirm the validity of data interpretation,
and disseminate findings for maximum impact. Researchers must be
intentional in developing meaningful partnerships with minoritized
communities. The examples highlighted in this paper illustrate that
meaningful understanding of lived experience of dementia is not only
feasible but offers clear benefits to dementia research.
While this position paper sets forth a conceptual and applied frame-
work for PPI within ADRD research, there are several limitations.
Although this paper was a collaboration between researchers and com-
munity members, we recognize that the audience for this paper is
researchers; and we included a community briefing (see supporting
information) to ensure our learnings can be disseminated more broadly.
This paper did not include the perspectives of people with moderate
or severe dementia, a group rarely included in PPI due to cognitive
and functional challenges. Although one strength of the paper is the
representation from individuals from different countries, it does not
include authors from lower- or middle-income countries. Standard-
ized terminology is required to fully situate PPI in ADRD research and
subsequent literature. The co-authors partnered to set forth nomen-
clature for use in this paper, but these terms should be compared to
and understood within local, national, and global environments.
8CONCLUSION
The inclusion of PPI in research should be the standard. Substantial
investments in resources, relationship building, funding, and time to
cultivate is required. Our shared goal for ADRD research is best cap-
tured by the perspective of a community member co-author: “We want
to see ADRD 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.”
ACKNOWLEDGMENTS
This article was facilitated by the Alzheimer’s Association International
Society to Advance Alzheimer’s Research and Treatment (ISTAART),
through the Partnering with Research Participants Professional Inter-
est Area (PIA). The views and opinions expressed by authors in this
publication represent those of the authors and do not necessarily
reflect those of the PIA membership, ISTAART or the Alzheimer’s
Association. There was no funding provided for this work.
CONFLICT OF INTEREST STATEMENT
RM is funded by the National Institute for Health and Care Research
(NIHR) for her fellowship (NIHR 301677) and supported by the NIHR
Newcastle Biomedical Research Centre (BRC) based at The Newcas-
tle upon Tyne Hospital NHS Foundation Trust, Newcastle University
and the Cumbria, Northumberland and Tyne and Wear (CNTW) NHS
Foundation Trust. SW receives funding from a grant for the Alzheimer’s
Clinical Trials Consortium (ACTC) National Institute on Aging (NIA),
National Institutes of Health (NIH; U24AG057437). EL is supported in
part by the National Institute on Aging (NIA) of the National Institutes
of Health under Award Number U54AG063546, which funds the NIA
Imbedded Pragmatic Alzheimer’s Disease and AD-Related Dementias
Clinical Trials Collaboratory (NIA IMPACT Collaboratory). The content
is solely the responsibility of the authors and does not necessarily rep-
resent the official views of the National Institutes of Health. CG, RE,
AG, SG, DK, IL, SLS, HM, NM, DMH, RS, CS, CS, MS, ASG have no fund-
ing sources to report in relation to this work. Author disclosures are
available in the supporting information.
CONSENT STATEMENT
Consent was not necessary for this article.
ORCID
Sarah Walter https://orcid.org/0000-0002-7849-8553
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SUPPORTING INFORMATION
Additional supporting information can be found online in the Support-
ing Information section at the end of this article.
How to cite this article: Walter S, McArdle RÍ, Largent EA,
et al. Public and participant involvement as a pathway to
inclusive dementia research. Alzheimer’s Dement.
2025;21:e14350. https://doi.org/10.1002/alz.14350
