{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,7]],"date-time":"2026-09-07T05:11:38Z","timestamp":1788757898450,"version":"build-2803163510"},"reference-count":19,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2026,9,7]],"date-time":"2026-09-07T00:00:00Z","timestamp":1788739200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Dement."],"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Dementia with Lewy bodies may account for up to 20% of dementia cases, yet public awareness remains limited. Public engagement may help communicate dementia research to wider audiences, but little is known about whether information spreads beyond event attendees. This study explored how attendees evaluated information about dementia with Lewy bodies and the ongoing Ambroxol in New and Early Dementia with Lewy Bodies (ANeED) clinical drug trial presented at a WiseAge public engagement event, and how they reported sharing this information afterwards.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>This descriptive cross-sectional study followed a WiseAge public engagement event that included information about dementia, dementia with Lewy bodies, and the clinical trial. A post-event survey was distributed to attendees, and responses were analysed descriptively.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Of 48 attendees, 18 completed the survey. The information was rated positively, with 16 of 18 rating it as good or very good. Attendees reported sharing information beyond the event, most commonly with friends (\n                      <jats:italic>n<\/jats:italic>\n                      \u202f=\u202f14) and family members (\n                      <jats:italic>n<\/jats:italic>\n                      \u202f=\u202f7), while sharing with neighbors was rare (\n                      <jats:italic>n<\/jats:italic>\n                      \u202f=\u202f1). The number of people with whom information was shared ranged from zero to six. No notable change in trial recruitment was observed during the post-event observation period.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>The event was well received and supported secondary dissemination through attendees\u2019 interpersonal networks, particularly friends and family. Although no immediate recruitment effect was observed, public engagement may extend the reach of dementia research communication beyond those who attend.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.3389\/frdem.2026.1919585","type":"journal-article","created":{"date-parts":[[2026,9,7]],"date-time":"2026-09-07T04:23:53Z","timestamp":1788755033000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":0,"title":["From engagement to dissemination: a WiseAge patient and public involvement and engagement event on dementia with Lewy bodies"],"prefix":"10.3389","volume":"5","author":[{"given":"Jon Arild","family":"Aakre","sequence":"first","affiliation":[{"name":"Department of Clinical Medicine, University of Bergen","place":["Bergen, Norway"]},{"name":"Centre for Age-Related Medicine - SESAM, Stavanger University Hospital","place":["Stavanger, Norway"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Arvid","family":"Rongve","sequence":"additional","affiliation":[{"name":"Department of Clinical Medicine, University of Bergen","place":["Bergen, Norway"]},{"name":"Department of Age Related Medicine, Clinic of Medicine, Helse Fonna, Haugesund Hospital","place":["Haugesund, Norway"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kari","family":"Fredriksen","sequence":"additional","affiliation":[{"name":"Centre for Age-Related Medicine - SESAM, Stavanger University Hospital","place":["Stavanger, Norway"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ellen J.","family":"Svendsboe","sequence":"additional","affiliation":[{"name":"Department of Health- and Social Sciences, Western Norway University of Applied Sciences","place":["Stord, Norway"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ingelin","family":"Testad","sequence":"additional","affiliation":[{"name":"Centre for Age-Related Medicine - SESAM, Stavanger University Hospital","place":["Stavanger, Norway"]},{"name":"Department of Health and Community Sciences, Faculty of Health and Life Sciences, University of Exeter","place":["Exeter, United Kingdom"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2026,9,7]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","first-page":"445","DOI":"10.1159\/000165917","article-title":"Frequency and case identification of dementia with Lewy bodies using the revised consensus criteria","volume":"26","author":"Aarsland","year":"2008","journal-title":"Dement. Geriatr. Cogn. Disord."},{"key":"ref2","doi-asserted-by":"publisher","first-page":"2298","DOI":"10.1002\/alz.13674","article-title":"Lewy body dementia: overcoming barriers and identifying solutions","volume":"20","author":"Agarwal","year":"2024","journal-title":"Alzheimers Dement."},{"key":"ref3","doi-asserted-by":"publisher","first-page":"e0239279","DOI":"10.1371\/journal.pone.0239279","article-title":"Research priorities of caregivers and individuals with dementia with Lewy bodies: an interview study","volume":"15","author":"Armstrong","year":"2020","journal-title":"PLoS One"},{"key":"ref4","doi-asserted-by":"publisher","first-page":"443","DOI":"10.1186\/s12913-025-12525-y","article-title":"Knowledge-seeking and knowledge sharing of health services across social networks and communities: a scoping review","volume":"25","author":"Bhowmick","year":"2025","journal-title":"BMC Health Serv. Res."},{"key":"ref5","doi-asserted-by":"publisher","first-page":"1163184","DOI":"10.3389\/fnagi.2023.1163184","article-title":"The ANeED study\u2014ambroxol in new and early dementia with Lewy bodies (DLB): protocol for a phase IIa multicentre, randomised, double-blinded and placebo-controlled trial","volume":"15","author":"Chwiszczuk","year":"2023","journal-title":"Front. Aging Neurosci."},{"key":"ref6","doi-asserted-by":"publisher","first-page":"k4738","DOI":"10.1136\/bmj.k4738","article-title":"Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis","volume":"363","author":"Crocker","year":"2018","journal-title":"BMJ"},{"key":"ref7","doi-asserted-by":"publisher","first-page":"1426019","DOI":"10.3389\/frdem.2024.1426019","article-title":"Meaningful patient and public engagement in dissemination-embedding co-production in dementia research","volume":"3","author":"de Wolf-Linder","year":"2024","journal-title":"Front. Dement."},{"key":"ref8","doi-asserted-by":"publisher","first-page":"e5814","DOI":"10.1002\/gps.5814","article-title":"Sleep disturbances in Lewy body dementia: a systematic review","volume":"37","author":"Elder","year":"2022","journal-title":"Int. J. Geriatr. Psychiatry"},{"key":"ref9","doi-asserted-by":"publisher","first-page":"1031831","DOI":"10.3389\/fneur.2022.1031831","article-title":"Keeping track of and recognizing the value of public involvement work in dementia research","volume":"13","author":"Georges","year":"2022","journal-title":"Front. Neurol."},{"key":"ref10","doi-asserted-by":"publisher","first-page":"363","DOI":"10.3233\/jad-240037","article-title":"Prevalence and determinants of diagnosed dementia: a registry linkage study linking diagnosis of dementia in the population-based HUNT study to registry diagnosis of dementia in primary care and hospitals in Norway","volume":"99","author":"Gj\u00f8ra","year":"2024","journal-title":"J. Alzheimer's Dis"},{"key":"ref11","doi-asserted-by":"publisher","first-page":"723","DOI":"10.1080\/13607863.2017.1317334","article-title":"Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement)","volume":"22","author":"Gove","year":"2018","journal-title":"Aging Ment. Health"},{"key":"ref12","doi-asserted-by":"publisher","first-page":"23337214211013596","DOI":"10.1177\/23337214211013596","article-title":"Creating dementia-friendly communities for social inclusion: a scoping review","volume":"7","author":"Hung","year":"2021","journal-title":"Gerontol. Geriatr. Med."},{"key":"ref13","doi-asserted-by":"publisher","first-page":"696","DOI":"10.1002\/alz.12737","article-title":"Recommendations to address key recruitment challenges of Alzheimer's disease clinical trials","volume":"19","author":"Langbaum","year":"2023","journal-title":"Alzheimers Dement."},{"key":"ref14","doi-asserted-by":"publisher","first-page":"390","DOI":"10.1016\/s1474-4422(17)30074-1","article-title":"The prognosis of dementia with Lewy bodies","volume":"16","author":"Mueller","year":"2017","journal-title":"Lancet Neurol."},{"key":"ref15","year":"2019"},{"key":"ref16","volume-title":"Exploring impact: Public Involvement in NHS, public Health and social care Research","author":"Staley","year":"2009"},{"key":"ref17","doi-asserted-by":"publisher","first-page":"13","DOI":"10.1186\/s40900-017-0062-2","article-title":"GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research","volume":"3","author":"Staniszewska","year":"2017","journal-title":"Res. Involv. Engagem."},{"key":"ref18","doi-asserted-by":"publisher","first-page":"1075","DOI":"10.1002\/gps.4433","article-title":"Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer's disease","volume":"31","author":"Svendsboe","year":"2016","journal-title":"Int. J. Geriatr. Psychiatry"},{"key":"ref19","doi-asserted-by":"publisher","first-page":"100281","DOI":"10.1016\/j.pecinn.2024.100281","article-title":"Public involvement and public engagement: an example of convergent evolution? Findings from a conceptual qualitative review of patient and public involvement, and public engagement, in health and scientific research","volume":"4","author":"Wilkinson","year":"2024","journal-title":"PEC Innov."}],"container-title":["Frontiers in Dementia"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/frdem.2026.1919585\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,9,7]],"date-time":"2026-09-07T04:23:54Z","timestamp":1788755034000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/frdem.2026.1919585\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,9,7]]},"references-count":19,"alternative-id":["10.3389\/frdem.2026.1919585"],"URL":"https:\/\/doi.org\/10.3389\/frdem.2026.1919585","relation":{},"ISSN":["2813-3919"],"issn-type":[{"value":"2813-3919","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,9,7]]},"article-number":"1919585"}}