{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,29]],"date-time":"2026-09-29T13:32:24Z","timestamp":1790688744100,"version":"4.1.0"},"reference-count":53,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2026,4,15]],"date-time":"2026-04-15T00:00:00Z","timestamp":1776211200000},"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>Dementia is a life-limiting condition, and a palliative care approach can improve both quality of life and quality of care for people living\u2014and dying\u2014with dementia. Research has consistently shown that, compared with other terminal conditions such as cancer, dementia is under-recognised and under-treated within palliative care systems. Considerable attention has been paid to this overall under-representation; however, further inequities exist within palliative dementia care research and practice itself. This position paper draws on an in-depth conversation with a person living alone with Alzheimer\u2019s disease and vascular dementia, alongside a critical engagement with existing literature. Using lived experience as a starting point, we identify two untapped dimensions of palliative dementia care: (1) barriers in palliative care conversations when a person with dementia attends clinical appointments unaccompanied; and (2) intersectional disadvantage arising from dementia, living alone, and health and social care systems that overly rely on informal carers or supporters. These contribute to exclusionary research practices that marginalise people living with dementia without close care partners. While the involvement of carers and supporters in shared decision-making should be encouraged when they are present, high-quality palliative care and research must not depend on their presence and should be equally accessible to people living with dementia who attend services alone. We argue that addressing this neglected area requires the meaningful involvement of people with lived experience in shaping both research agendas and clinical practice.<\/jats:p>","DOI":"10.3389\/frdem.2026.1791608","type":"journal-article","created":{"date-parts":[[2026,4,15]],"date-time":"2026-04-15T15:24:48Z","timestamp":1776266688000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":1,"title":["Palliative care conversations with people with dementia who live alone: untapped dimensions from a lived experience"],"prefix":"10.3389","volume":"5","author":[{"given":"Lesley E.","family":"Williamson","sequence":"first","affiliation":[{"name":"NIHR Applied Research Collaboration South London; Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, and NIHR Health & Social Care Workforce Research Unit, The Policy Institute, King\u2019s College London","place":["London, United Kingdom"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dawn","family":"Horne","sequence":"additional","affiliation":[{"name":"Person Living with Dementia","place":["Canterbury, United Kingdom"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rasa","family":"Mikelyte","sequence":"additional","affiliation":[{"name":"NIHR Applied Research Collaboration Kent, Surrey and Sussex; Centre for Health Services Studies, University of Kent","place":["Canterbury, United Kingdom"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elisabeth B.","family":"Grey","sequence":"additional","affiliation":[{"name":"NIHR Applied Research Collaboration West; Population Health Sciences, Bristol Medical School, University of Bristol","place":["Bristol, United Kingdom"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pippa","family":"Collins","sequence":"additional","affiliation":[{"name":"NIHR Applied Research Collaboration Wessex; School of Health Science University Southampton","place":["Southampton, United Kingdom"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christopher","family":"Poyner","sequence":"additional","affiliation":[{"name":"Rural Mental Health Research Unit, Department of Psychology and Mental Health, School of Health and Wellbeing, University of Worcester","place":["Worcester, United Kingdom"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Annabel","family":"Farnood","sequence":"additional","affiliation":[{"name":"NIHR Applied Research Collaboration South London; Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King\u2019s College London","place":["London, United Kingdom"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tomasina M.","family":"Oh","sequence":"additional","affiliation":[{"name":"NIHR Applied Research Collaboration South West Peninsula; Community and Primary Care Research Centre, Peninsula Medical School, Faculty of Health, University of Plymouth","place":["Plymouth, United Kingdom"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2026,4,15]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","first-page":"135","DOI":"10.31389\/jltc.194","article-title":"Living alone with dementia - managing without informal support to contact and navigate services: a mixed methods protocol","author":"Aspinal","year":"2023","journal-title":"J. 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