Dementia with Lewy bodies occupies an unusual position in public consciousness. Although it may account for as many as one in five dementia cases, it remains far less recognizable to the general population than Alzheimer’s disease, and even many healthcare professionals encounter it infrequently enough that diagnostic delays are common. The condition combines cognitive decline with features more often associated with Parkinson’s disease, including motor slowness, tremor, and stiffness, alongside disturbances such as vivid visual hallucinations, fluctuations in attention that can make a person seem alert one moment and confused the next, and a striking phenomenon in which people act out their dreams during sleep. This combination of symptoms means patients frequently shuttle between neurologists, geriatricians, psychiatrists, and general practitioners before anyone arrives at the correct label, and misdiagnosis as Alzheimer’s disease or Parkinson’s disease is well documented. The consequences of that diagnostic wandering are not merely administrative: families describe years of uncertainty, and clinicians may miss opportunities to plan care, avoid medications that can worsen symptoms, and connect patients with appropriate support services.

Against this backdrop, the researchers behind the WiseAge event argue that raising public awareness is not a peripheral activity but a core strategy. Greater familiarity with less common dementias could shorten the path to diagnosis, reduce the stigma that still clings to cognitive decline, and prepare more people to consider participating in research before they or their loved ones are directly affected. Norway presents a particular challenge in this respect. National surveys suggest that only about a third of people living with dementia have received a formal diagnosis, and many of those diagnoses come late in the disease course. Because recruitment into Norwegian dementia drug trials typically flows through the regional healthcare system, people who have never engaged with specialist services—perhaps because their symptoms are mild, unrecognized, or unspoken—are effectively invisible to trial recruiters. Public engagement events offer one of the few channels through which research opportunities can reach this population directly, bypassing the clinical gatekeeping that otherwise determines who hears about ongoing studies.

The WiseAge platform itself represents a deliberate investment in this kind of infrastructure. Established in 2015 by the Centre for Age-Related Medicine in Stavanger, it has grown to more than two hundred members aged sixty and older, drawn from a wide range of professional and personal backgrounds. Its structure distinguishes between two related but distinct activities. Involvement refers to members of the public actively shaping research—sitting on advisory panels, reviewing study designs, commenting on the relevance of research questions, and following projects from conception through dissemination. Engagement, by contrast, refers to outward-facing communication: lectures, events, and materials designed to inform the wider public about ageing-related conditions and the research underway. The WiseAge User Panel, a standing advisory group of up to fifteen members, meets regularly with researchers to critique proposals and assign user representatives to individual studies, ensuring that the perspective of people with lived experience is embedded in the research process rather than appended to it after the fact.

The event examined in the study centered on a one-hour lecture covering dementia in general, dementia with Lewy bodies in particular, and the Ambroxol in New and Early Dementia with Lewy Bodies trial, known as ANeED. That trial is testing whether ambroxol, a drug long used for respiratory conditions that has more recently attracted attention for its effects on a protein implicated in Lewy body disease, can slow the progression of the condition when started early. The study runs for eighteen months as a randomized controlled trial, followed by an open-label extension of another year, and is paired with parallel work examining the distress experienced by caregivers and collecting digital sensor data with the aim of developing digital biomarkers of the disease. Presenting an active trial at a public event serves a dual purpose: it educates attendees about the science, and it makes the existence of the trial known to people who might themselves be eligible, or who might know someone who is.

The survey findings offer a textured, if modest, picture of what happened after the lecture hall emptied. Sixteen of the eighteen respondents rated the information as good or very good, suggesting that the content struck an appropriate balance between accessibility and substance. More intriguing than the ratings, however, were the reports of secondary dissemination. Fourteen respondents said they had talked about what they learned with friends, and seven with family members, while only a single respondent mentioned speaking with a neighbor. The number of people each attendee reached ranged from none to six. This pattern—strong along friendship and family lines, weak along neighborhood lines—echoes a long-standing observation in communication research that health information travels most readily through ties of affection and obligation rather than through mere geographic proximity. Friends and family members are the people with whom attendees feel permission to raise personal topics such as memory loss, hallucinations, or a loved one’s strange sleep behavior; neighbors, however well meaning, occupy a more formal social distance that such conversations rarely cross.

The finding that some attendees shared the information with no one at all is equally instructive. Dissemination is not automatic, and even a well-received lecture does not guarantee that its content will circulate. Some attendees may have attended out of general interest in ageing rather than any personal connection to dementia, and others may have felt the material was not relevant to anyone in their circle. Understanding what motivates an attendee to become an active messenger—rather than a passive recipient—remains an open question that future engagement research could productively explore, perhaps by asking attendees directly what prompts them to bring up the topic with others and what barriers hold them back.

The absence of any measurable change in trial recruitment during the observation period deserves careful interpretation rather than dismissal. Clinical trial enrollment is a slow, multi-step process: a person must hear about a study, recognize themselves or a relative as potentially eligible, discuss the possibility with family or a physician, make contact with the trial team, undergo screening, and only then be enrolled. Each step introduces delay and attrition, so an effect on recruitment, if any exists, would plausibly emerge over months rather than days or weeks. Moreover, the observation window in a study of this size cannot distinguish between a genuinely absent effect and one too small or too delayed to detect with so few attendees and respondents. The authors’ conclusion is appropriately measured: engagement events may extend the reach of research communication, but demonstrating an effect on the hard endpoint of enrollment requires larger samples and longer follow-up.

There is also a methodological lesson in the response rate. Of forty-eight attendees, eighteen completed the post-event survey—a return of roughly thirty-eight percent. Those who respond to surveys after engagement events may differ systematically from those who do not, perhaps being more engaged, more knowledgeable, or more connected to the topic beforehand. If the most enthusiastic attendees were the most likely to respond, the reported levels of satisfaction and dissemination may overstate what the average attendee experienced. Conversely, non-responders may include people who left with unanswered questions or who simply forgot. Either way, the descriptive nature of the analysis means the findings should be read as a portrait of this particular event rather than a general law about public engagement, and the authors are careful to frame them that way.

The study also highlights a practical tension in the field of patient and public involvement and engagement. The terminology itself—involvement versus engagement versus participation—remains contested, with overlapping definitions that complicate comparisons across studies. Reporting frameworks such as the GRIPP 2 checklist, which this study followed, have emerged precisely to bring consistency to how such activities are described and evaluated. Without shared standards, it is difficult to know whether one engagement event succeeded where another failed, or whether the differences lie in how the activities were defined and measured in the first place. By reporting its methods and outcomes transparently, even in a brief research report format, this study contributes to the slow accumulation of comparable evidence that the field needs.

For research funders and institutions, the broader implication is that engagement should be evaluated on its own terms rather than judged solely by its downstream effect on recruitment. The immediate product of a well-attended lecture is a roomful of people who understand a condition better than they did an hour earlier and who possess a concrete example of research in progress. Some fraction of those people will carry that knowledge into conversations with friends and family, multiplying the audience well beyond the original headcount. That multiplier effect—here, an average of a few additional people reached per respondent, with some reaching as many as six—is a form of impact that conventional recruitment metrics cannot capture but that matters for public understanding of science, for destigmatization, and for the long-term cultivation of a research-literate public.

Finally, the study underscores the value of embedding user panels in the design of engagement activities themselves. Because WiseAge members helped shape the event and the study of its effects, the survey instrument and the framing of the lecture likely reflected the concerns and language of the audience rather than the assumptions of researchers. This kind of co-design is increasingly recognized as essential for meaningful involvement, and it may partly explain why the information was rated so favorably. As dementia research continues to seek participants for an expanding pipeline of trials, the lesson from Stavanger is that the path from a lecture hall to a clinical trial site runs through kitchens and living rooms, in conversations between friends and among family members—and that understanding, nurturing, and measuring those conversations is a research enterprise in its own right.

Subject of Research: Public engagement and secondary dissemination of information about dementia with Lewy bodies and the ANeED clinical trial through attendees' social networks.

Article Title: From engagement to dissemination: a WiseAge patient and public involvement and engagement event on dementia with Lewy bodies

Article References: Aakre, J. A., Rongve, A., Fredriksen, K., Svendsboe, E. J., & Testad, I. (2026). From engagement to dissemination: a WiseAge patient and public involvement and engagement event on dementia with Lewy bodies. Frontiers in Dementia, 5, Article 1919585. https://doi.org/10.3389/frdem.2026.1919585

Image Credits: AI Generated

DOI: 10.3389/frdem.2026.1919585

Keywords: dementia with Lewy bodies, patient and public involvement, public engagement, ANeED trial, secondary dissemination, clinical trial recruitment, WiseAge, Norway, health communication, social networks, dementia awareness, engagement