{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,13]],"date-time":"2026-04-13T04:55:25Z","timestamp":1776056125313,"version":"3.50.1"},"reference-count":57,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2026,4,13]],"date-time":"2026-04-13T00:00:00Z","timestamp":1776038400000},"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:p>This manuscript, co-created by researchers and people living with dementia and their care partners, explores how engagement with lived experience can transform conventional, deficit-based understandings of dementia\u2014often defined by what is lost. While clinically useful, this framing can obscure the richness, resilience, and relational depth present in the lives of people living with dementia. Drawing on a collaborative and reflective process inspired by participation in Walking the Talk for Dementia 2025\u2014a global immersive event that brought together people with lived experience of dementia, researchers, advocates, clinicians, and artists\u2014the paper challenges traditional narratives of dementia. Through in-person and virtual discussions and documented reflections, the team conducted a qualitative thematic analysis to identify key insights. Three themes emerged: (1) \u2018Dementia Reimagined\u2019, highlighting personal and professional transformation and new identities; (2) \u2018Flourishing through Creativity and Resilience\u2019, illustrating humor, creativity, leadership, and authentic connection; and (3) \u2018Dementia as a Catalyst for Love and Understanding\u2019, emphasizing enduring love and deepened empathy within families and communities. These findings demonstrate that living with dementia can foster resilience, creativity, and meaningful human connection. This experiential, co-produced approach reframes dementia beyond deficit-based models, offering transformative insights that can inform person-centered care practices, policy development, and increase awareness.<\/jats:p>","DOI":"10.3389\/frdem.2026.1797005","type":"journal-article","created":{"date-parts":[[2026,4,13]],"date-time":"2026-04-13T04:36:11Z","timestamp":1776054971000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":0,"title":["Extraordinary abilities, creativity, and love, in the path of dementia: a perspective article on the Walking the Talk for Dementia 2025 initiative"],"prefix":"10.3389","volume":"5","author":[{"given":"Madalena P.","family":"Liougas","sequence":"first","affiliation":[{"name":"Temerty Faculty of Medicine, Rehabilitation Science Institute, University of Toronto","place":["Toronto, ON, Canada"]},{"name":"KITE Research Institute, Toronto Rehabilitation Institute-University Health Network","place":["Toronto, ON, Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Prabha","family":"Shrestha","sequence":"additional","affiliation":[{"name":"Department of Nursing and Midwifery, Kathmandu University School of Medical Sciences","place":["Dhulikhel, Nepal"]},{"name":"Global Brain Health Institute","place":["San Francisco, CA, United States"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Belen","family":"Custodio","sequence":"additional","affiliation":[{"name":"Research Department, Instituto Peruano de Neurociencias","place":["Lima, Peru"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lenisa","family":"Brandao","sequence":"additional","affiliation":[{"name":"Speech, Language and Hearing Department, Federal University of Santa Maria (UFSM)","place":["Santa Maria, Brazil"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kevin","family":"Cullen","sequence":"additional","affiliation":[{"name":"The Dementia Research Advisory Team (PPI), Alzheimer Society of Ireland","place":["Dublin, Ireland"]},{"name":"Walking the Talk for Dementia","place":["Belo Horizonte, Brazil"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Therese","family":"Maher","sequence":"additional","affiliation":[{"name":"Walking the Talk for Dementia","place":["Belo Horizonte, Brazil"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Karen","family":"Young","sequence":"additional","affiliation":[{"name":"Walking the Talk for Dementia","place":["Belo Horizonte, Brazil"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alan","family":"Young","sequence":"additional","affiliation":[{"name":"Walking the Talk for Dementia","place":["Belo Horizonte, Brazil"]}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1965","published-online":{"date-parts":[[2026,4,13]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","first-page":"2309","DOI":"10.1002\/alz.13644","article-title":"Walking the talk for dementia: a unique immersive, embodied, and multi-experiential initiative","volume":"20","author":"Aguzzoli Peres","year":"2024","journal-title":"Alzheimers Dement."},{"key":"ref2","volume-title":"Dementia in Europe Yearbook 2018: Comparison of National Dementia Strategies in Europe","year":"2018"},{"key":"ref3","volume-title":"Diagnostic and Statistical Manual of Mental Disorders: DSM-5","year":"2013"},{"key":"ref4","year":"2024"},{"key":"ref5","doi-asserted-by":"publisher","first-page":"e13987","DOI":"10.1111\/hex.13987","article-title":"Co-design of the EMBED-care framework as an intervention to enhance shared decision-making for people affected by dementia and practitioners, comprising holistic assessment, linked with clinical decision support tools: a qualitative study","volume":"27","author":"Aworinde","year":"2024","journal-title":"Health Expect."},{"key":"ref6","doi-asserted-by":"publisher","first-page":"146","DOI":"10.1136\/jnnp.2005.072983","article-title":"Quality of life in dementia: more than just cognition. An analysis of associations with quality of life in dementia","volume":"77","author":"Banerjee","year":"2006","journal-title":"J. Neurol. Neurosurg. Psychiatry"},{"key":"ref7","doi-asserted-by":"publisher","first-page":"15","DOI":"10.1002\/gps.2090","article-title":"What do we know about quality of life in dementia? A review of the emerging evidence on the predictive and explanatory value of disease specific measures of health related quality of life in people with dementia","volume":"24","author":"Banerjee","year":"2009","journal-title":"Int. J. Geriatr. Psychiatry"},{"key":"ref001","doi-asserted-by":"publisher","first-page":"261","DOI":"10.1017\/S0144686X11000328","article-title":"Ageing activists: who gets involved in older people\u2019s forums?","volume":"32","author":"Barnes","year":"2012","journal-title":"Ageing Soc"},{"key":"ref8","doi-asserted-by":"publisher","first-page":"254","DOI":"10.5770\/cgj.25.583","article-title":"Engaging people with lived experience of dementia in research: perspectives from a multi-disciplinary research network","volume":"25","author":"Bechard","year":"2022","journal-title":"Can. Geriatr. J."},{"key":"ref9","doi-asserted-by":"publisher","first-page":"e085965","DOI":"10.1002\/alz.085965","article-title":"Engaging people with lived experience in a national research network: experience from the Canadian consortium on neurodegeneration in aging","volume":"20","author":"Bethell","year":"2025","journal-title":"Alzheimer's Dement."},{"key":"ref10","doi-asserted-by":"publisher","first-page":"1386746","DOI":"10.3389\/fresc.2024.1386746","article-title":"Shining a light on the road towards conducting principle-based co-production research in rehabilitation","volume":"5","author":"Bourke","year":"2024","journal-title":"Front. Rehabil. Sci."},{"key":"ref11","doi-asserted-by":"publisher","first-page":"77","DOI":"10.1191\/1478088706qp063oa","article-title":"Using thematic analysis in psychology","volume":"3","author":"Braun","year":"2006","journal-title":"Qual. Res. Psychol."},{"key":"ref13","first-page":"4","article-title":"Age-friendly environment and health among older Americans","volume":"84","author":"Cheung","year":"2023","journal-title":"Dissert. Abstr. Int. Sect. Human. Soc. Sci."},{"key":"ref14","doi-asserted-by":"crossref","first-page":"1037","DOI":"10.1093\/geronb\/gbac022","article-title":"Longitudinal trajectories of quality of life among people with mild-to-moderate dementia: a latent growth model approach with IDEAL cohort study data","volume":"77","author":"Clare","year":"2022","journal-title":"J. Gerontol. B Psychol. Sci. Soc. Sci."},{"key":"ref15","doi-asserted-by":"publisher","first-page":"164","DOI":"10.1186\/s12955-014-0164-6","article-title":"Improving the experience of dementia and enhancing active life--living well with dementia: study protocol for the IDEAL study","volume":"12","author":"Clare","year":"2014","journal-title":"Health Qual. Life Outcomes"},{"key":"ref16","doi-asserted-by":"publisher","first-page":"36","DOI":"10.1097\/WAD.0000000000000286","article-title":"A comprehensive model of factors associated with subjective perceptions of \u201cliving well\u201d with dementia: findings from the IDEAL study","volume":"33","author":"Clare","year":"2019","journal-title":"Alzheimer Dis. Assoc. Disord."},{"key":"ref17","doi-asserted-by":"publisher","first-page":"557","DOI":"10.1017\/S1041610215001532","article-title":"Correlates and predictors of loneliness in older-adults: a review of quantitative results informed by qualitative insights","volume":"28","author":"Cohen-Mansfield","year":"2016","journal-title":"Int. Psychogeriatr."},{"key":"ref18","doi-asserted-by":"crossref","DOI":"10.1007\/978-3-030-56417-9","volume-title":"Arts and Health Promotion: Tools and Bridges for Practice, Research, and Social Transformation","author":"Corbin","year":"2021"},{"key":"ref19","doi-asserted-by":"publisher","first-page":"776","DOI":"10.1186\/s12877-024-05343-0","article-title":"Dementia friendly communities (DFCs) to improve quality of life for people with dementia: a realist review","volume":"24","author":"Craig","year":"2024","journal-title":"BMC Geriatr."},{"key":"ref20","year":"2009"},{"key":"ref21","doi-asserted-by":"publisher","first-page":"2559","DOI":"10.3390\/healthcare10122559","article-title":"Through thick and thin: the meaning of dementia for the intimacy of ageing couples","volume":"10","author":"Eskola","year":"2022","journal-title":"Healthcare"},{"key":"ref22","doi-asserted-by":"publisher","first-page":"287","DOI":"10.1093\/geroni\/igad104.0957","article-title":"Reciprocity among care partner dyads and its influence on outcomes in dementia family caregivers","volume":"7","author":"Falzarano","year":"2023","journal-title":"Innov. Aging"},{"key":"ref23","doi-asserted-by":"publisher","first-page":"1031","DOI":"10.1080\/13607863.2014.996734","article-title":"Active ageing and quality of life: factors associated with participation in leisure activities among institutionalized older adults, with and without dementia","volume":"19","author":"Fern\u00e1ndez-Mayoralas","year":"2015","journal-title":"Aging Ment. Health"},{"key":"ref24","doi-asserted-by":"publisher","first-page":"665","DOI":"10.1007\/s11019-020-09973-0","article-title":"Embodiment and personal identity in dementia","volume":"23","author":"Fuchs","year":"2020","journal-title":"Med. Health Care Philos."},{"key":"ref25","volume-title":"World Alzheimer Report 2022: Life after Diagnosis: Navigating Treatment, Care and Support","author":"Gauthier","year":"2022"},{"key":"ref26","doi-asserted-by":"publisher","first-page":"459","DOI":"10.1080\/01459740.2012.674991","article-title":"Tackling indifference\u2014clowning, dementia, and the articulation of a sensitive body","volume":"31","author":"Hendriks","year":"2012","journal-title":"Med. Anthropol."},{"key":"ref27","doi-asserted-by":"publisher","first-page":"285","DOI":"10.1097\/WAD.0b013e318194fc1e","article-title":"Changes in the quality of life of people with dementia living in care homes","volume":"23","author":"Hoe","year":"2009","journal-title":"Alzheimer Dis. Assoc. Disord."},{"key":"ref28","doi-asserted-by":"publisher","first-page":"e222","DOI":"10.1016\/S2666-7568(21)00031-3","article-title":"Dementia caregiving across Latin America and the Caribbean and brain health diplomacy","volume":"2","author":"Ib\u00e1\u00f1ez","year":"2021","journal-title":"Lancet Healthy Longev."},{"key":"ref29","doi-asserted-by":"crossref","first-page":"714","DOI":"10.1093\/geront\/gnaa129","article-title":"Dancing with dementia: exploring the embodied dimensions of creativity and social engagement","volume":"61","author":"Kontos","year":"2021","journal-title":"Gerontologist"},{"key":"ref30","doi-asserted-by":"publisher","first-page":"36","DOI":"10.3928\/02793695-20180329-04","article-title":"Chronic stress, social isolation, and perceived loneliness in dementia caregivers","volume":"56","author":"Kovaleva","year":"2018","journal-title":"J. Psychosoc. Nurs. Ment. Health Serv."},{"key":"ref31","doi-asserted-by":"publisher","first-page":"1441","DOI":"10.1007\/s10433-022-00729-8","article-title":"Loneliness among very old people with and without dementia: prevalence and associated factors in a representative sample","volume":"19","author":"Lampinen","year":"2022","journal-title":"Eur. J. Ageing"},{"key":"ref32","doi-asserted-by":"publisher","first-page":"e088439","DOI":"10.1136\/bmjopen-2024-088439","article-title":"Social inclusion programming for older adults living in age-friendly cities: a scoping review","volume":"15","author":"Liougas","year":"2025","journal-title":"BMJ Open"},{"key":"ref33","doi-asserted-by":"publisher","first-page":"1035","DOI":"10.1177\/1471301218789309","article-title":"Reflections on PPI from the \u2018action on living well: asking you\u2019 advisory network of people with dementia and carers as part of the IDEAL study","volume":"17","author":"Litherland","year":"2018","journal-title":"Dementia"},{"key":"ref34","doi-asserted-by":"publisher","first-page":"2130","DOI":"10.1017\/S0033291718000405","article-title":"Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction in people with dementia","volume":"48","author":"Martyr","year":"2018","journal-title":"Psychol. Med."},{"key":"ref35","doi-asserted-by":"publisher","first-page":"303","DOI":"10.1111\/opn.12010","article-title":"Moving the agenda forward: a person-centred framework in long-term care","volume":"7","author":"McGilton","year":"2012","journal-title":"Int. J. Older People Nursing"},{"key":"ref36","doi-asserted-by":"publisher","first-page":"8196","DOI":"10.1038\/s41467-025-63277-6","article-title":"Social exposome and brain health outcomes of dementia across Latin America","volume":"16","author":"Migeot","year":"2025","journal-title":"Nat. Commun."},{"key":"ref37","year":"2021"},{"key":"ref38","doi-asserted-by":"publisher","first-page":"343","DOI":"10.3233\/jad-210647","article-title":"Key intervention categories to provide person-centered dementia care: a systematic review of person-centered interventions","volume":"84","author":"Mohr","year":"2021","journal-title":"J. Alzheimer's Dis"},{"key":"ref39","doi-asserted-by":"publisher","first-page":"45","DOI":"10.1111\/j.1365-2702.2004.00926.x","article-title":"Beyond \u2018person-centred\u2019care: a new vision for gerontological nursing","volume":"13","author":"Nolan","year":"2004","journal-title":"J. Clin. Nurs."},{"key":"ref40","doi-asserted-by":"publisher","first-page":"24","DOI":"10.1111\/jgs.13178","article-title":"Factors that affect quality of life from the perspective of people with dementia: a metasynthesis","volume":"63","author":"O\u2019Rourke","year":"2015","journal-title":"J. Am. Geriatr. Soc."},{"key":"ref41","volume-title":"Dementia: A Public Health Priority","year":"2012"},{"key":"ref42","doi-asserted-by":"crossref","first-page":"295","DOI":"10.1002\/alz.12202","article-title":"Dementia in Latin America: paving the way toward a regional action plan","volume":"17","author":"Parra","year":"2021","journal-title":"Alzheimers Dement."},{"key":"ref43","volume-title":"A Dementia Strategy for Canada: Together We Aspire","year":"2019"},{"key":"ref44","doi-asserted-by":"publisher","first-page":"gnaf121","DOI":"10.1093\/geront\/gnaf121","article-title":"Bridging the accountability gap between aging and disability research","volume":"65","author":"Putnam","year":"2025","journal-title":"Gerontologist"},{"key":"ref45","doi-asserted-by":"publisher","DOI":"10.1002\/gps.5627","article-title":"Living well with dementia: what is possible and how to promote it","volume":"37","author":"Quinn","year":"2022","journal-title":"Int. J. Geriatr. Psychiatry"},{"key":"ref46","doi-asserted-by":"publisher","first-page":"igad091","DOI":"10.1093\/geroni\/igad091","article-title":"Participatory research approaches in Alzheimer's disease and related dementias literature: a scoping review","volume":"7","author":"Reyes","year":"2023","journal-title":"Innov. Aging"},{"key":"ref47","doi-asserted-by":"publisher","first-page":"1606705","DOI":"10.3389\/ijph.2024.1606705","article-title":"Unlocking engagement: enhancing participation in research with vulnerable populations","volume":"69","author":"Rojas-Rozo","year":"2024","journal-title":"Int. J. Public Health"},{"key":"ref48","doi-asserted-by":"publisher","first-page":"100032","DOI":"10.1016\/j.wss.2021.100032","article-title":"Exploring the impact of live music performances on the wellbeing of community dwelling people living with dementia and their care partners","volume":"2","author":"Smith","year":"2021","journal-title":"Wellbeing Space Soc."},{"key":"ref49","doi-asserted-by":"publisher","first-page":"28","DOI":"10.1186\/s40900-022-00359-5","article-title":"Engagement of people with lived experience of dementia advisory group and cross-cutting program: reflections on the first year","volume":"8","author":"Snowball","year":"2022","journal-title":"Res. Involv. Engagem."},{"key":"ref50","doi-asserted-by":"publisher","first-page":"130","DOI":"10.35680\/2372-0247.1111","article-title":"Relationship-centred care in health: a 20-year scoping review","volume":"3","author":"Soklaridis","year":"2016","journal-title":"Patient Exp. J."},{"key":"ref51","doi-asserted-by":"publisher","first-page":"e12299","DOI":"10.1111\/opn.12299","article-title":"The value of \u201cus\u201d\u2014expressions of togetherness in couples where one spouse has dementia","volume":"15","author":"Swall","year":"2020","journal-title":"Int. J. Older People Nursing"},{"key":"ref52","doi-asserted-by":"publisher","first-page":"85","DOI":"10.1093\/jmp\/jhad044","article-title":"The relational care framework: promoting continuity or maintenance of selfhood in person-centered care","volume":"49","author":"Tieu","year":"2024","journal-title":"J. Med. Philos."},{"key":"ref53","doi-asserted-by":"publisher","first-page":"301","DOI":"10.1016\/j.trci.2017.03.008","article-title":"Diagnostic dilemmas in Alzheimer\u2019s disease: room for shared decision making","volume":"3","author":"van der Flier","year":"2017","journal-title":"Alzheimers Dement. (N Y)"},{"key":"ref54","doi-asserted-by":"publisher","first-page":"e0005317","DOI":"10.1371\/journal.pgph.0005317","article-title":"People with lived experience of chronic conditions are key epistemic authorities in global health","volume":"5","author":"Vijayasingham","year":"2025","journal-title":"PLOS Glob Public Health"},{"key":"ref55","doi-asserted-by":"publisher","first-page":"45","DOI":"10.3389\/fmed.2020.00045","article-title":"Fostering the resilience of people with dementia: a narrative literature review","volume":"7","author":"Whelan","year":"2020","journal-title":"Front. Med. (Lausanne)"},{"key":"ref56","volume-title":"Global Action Plan on the Public Health Response to Dementia 2017\u20132025","year":"2017"},{"key":"ref57","doi-asserted-by":"publisher","first-page":"73","DOI":"10.1186\/s40900-025-00715-1","article-title":"Evaluation of the impact of patient and public involvement on doctoral students in palliative dementia care research","volume":"11","author":"Yang","year":"2025","journal-title":"Res. Involv. Engagem."}],"container-title":["Frontiers in Dementia"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/frdem.2026.1797005\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,13]],"date-time":"2026-04-13T04:36:24Z","timestamp":1776054984000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/frdem.2026.1797005\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,4,13]]},"references-count":57,"alternative-id":["10.3389\/frdem.2026.1797005"],"URL":"https:\/\/doi.org\/10.3389\/frdem.2026.1797005","relation":{},"ISSN":["2813-3919"],"issn-type":[{"value":"2813-3919","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,4,13]]},"article-number":"1797005"}}