{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,10]],"date-time":"2026-03-10T21:09:51Z","timestamp":1773176991661,"version":"3.50.1"},"reference-count":58,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2022,6,8]],"date-time":"2022-06-08T00:00:00Z","timestamp":1654646400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2022,6,8]],"date-time":"2022-06-08T00:00:00Z","timestamp":1654646400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"The Graduate School of Kyoto University, Japan"},{"DOI":"10.13039\/501100000320","name":"Alzheimer's Society","doi-asserted-by":"publisher","award":["AS-JF-16b-012"],"award-info":[{"award-number":["AS-JF-16b-012"]}],"id":[{"id":"10.13039\/501100000320","id-type":"DOI","asserted-by":"publisher"}]},{"name":"the University Network for the Care sector Zuid-Holland (UNC-ZH), Leiden, the Netherlands"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Palliat Care"],"published-print":{"date-parts":[[2022,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>Research on the nature of a \u201cgood death\u201d has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>We combined published qualitative studies about end of life with dementia, focus group and individual interviews with the researchers, and video-conferencing and continuous email discussions. The interviews were audio-recorded and transcribed verbatim. The data were analyzed thematically, and the researchers developed common themes referring to their original studies.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Fourteen qualitative researchers representing 14 cross-cultural studies covering qualitative data of 121 people with dementia and 292 family caregivers. The researchers and data were from eight countries UK, The Netherlands, Japan, Portugal, Germany, Canada, Brazil, and Ireland. Three focus groups, five individual interviews, and video-conferencing were conducted and feedback on multiple iterations was gained by 190 emails between May 2019 and April 2020 until consensus was achieved. Nine cross-culturally common themes emerged from the discussions and shared interpretation of the data of persons with dementia and family caregivers. Three represent basic needs: \u201cPain and Symptoms Controlled,\u201d \u201cBeing Provided Basic Care,\u201d and \u201cA Place like Home.\u201d Other themes were \u201cHaving Preferences Met,\u201d \u201cReceiving Respect as a Person,\u201d \u201cCare for Caregivers,\u201d \u201cIdentity Being Preserved,\u201d \u201cBeing Connected,\u201d and \u201cSatisfaction with Life and Spiritual Well-being.\u201d \u201cCare for Caregivers\u201d showed the greatest difference in emphasis across cultures. Good relationships were essential in all themes.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>The common cross-cultural themes comprise a framework underpinned by value placed on personhood and dignity, emphasizing that interdependency through relationships is essential to promote a good end of life with dementia. These themes and valuing the importance of relationships as central to connecting the themes could support care planning and further development of a dementia palliative care model.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Trial registration<\/jats:title>\n                <jats:p>The Graduate School and Faculty of Medicine Kyoto University (R1924\u20131).<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s12904-022-00982-9","type":"journal-article","created":{"date-parts":[[2022,6,8]],"date-time":"2022-06-08T14:03:10Z","timestamp":1654696990000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":20,"title":["Cross-cultural conceptualization of a good end of life with dementia: a qualitative study"],"prefix":"10.1186","volume":"21","author":[{"given":"Mayumi","family":"Nishimura","sequence":"first","affiliation":[]},{"given":"Karen Harrison","family":"Dening","sequence":"additional","affiliation":[]},{"given":"Elizabeth L.","family":"Sampson","sequence":"additional","affiliation":[]},{"given":"Edison Iglesias","family":"de Oliveira Vidal","sequence":"additional","affiliation":[]},{"given":"Wilson Correia","family":"de Abreu","sequence":"additional","affiliation":[]},{"given":"Sharon","family":"Kaasalainen","sequence":"additional","affiliation":[]},{"given":"Yvonne","family":"Eisenmann","sequence":"additional","affiliation":[]},{"given":"Laura","family":"Dempsey","sequence":"additional","affiliation":[]},{"given":"Kirsten J.","family":"Moore","sequence":"additional","affiliation":[]},{"given":"Nathan","family":"Davies","sequence":"additional","affiliation":[]},{"given":"Sascha R.","family":"Bolt","sequence":"additional","affiliation":[]},{"given":"Judith M. M.","family":"Meijers","sequence":"additional","affiliation":[]},{"given":"Natashe Lemos","family":"Dekker","sequence":"additional","affiliation":[]},{"given":"Mitsunori","family":"Miyashita","sequence":"additional","affiliation":[]},{"given":"Miharu","family":"Nakanishi","sequence":"additional","affiliation":[]},{"given":"Takeo","family":"Nakayama","sequence":"additional","affiliation":[]},{"given":"Jenny T.","family":"van der Steen","sequence":"additional","affiliation":[]}],"member":"297","published-online":{"date-parts":[[2022,6,8]]},"reference":[{"key":"982_CR1","doi-asserted-by":"publisher","first-page":"1529","DOI":"10.1056\/NEJMoa0902234","volume":"361","author":"SL Mitchell","year":"2009","unstructured":"Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361:1529\u201338.","journal-title":"N Engl J Med"},{"key":"982_CR2","doi-asserted-by":"publisher","first-page":"1107","DOI":"10.1001\/archinternmed.2010.166","volume":"170","author":"A Chang","year":"2010","unstructured":"Chang A, Walter LC. Recognizing dementia as a terminal illness in nursing home residents: comment on \"survival and comfort after treatment of pneumonia in advanced dementia\". Arch Intern Med. 2010;170:1107\u20139.","journal-title":"Arch Intern Med"},{"key":"982_CR3","doi-asserted-by":"publisher","first-page":"197","DOI":"10.1177\/0269216313493685","volume":"28","author":"JT van der Steen","year":"2014","unstructured":"van der Steen JT, Radbruch L, Hertogh CMPM, de Boer ME, Hughes JC, Larkin P, et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European association for palliative care. Palliat Med. 2014;28:197\u2013209.","journal-title":"Palliat Med"},{"key":"982_CR4","volume-title":"Palliative care and dementia statement. Worldwide hospice palliative care alliance","author":"Worldwide Hospice Palliative Care Alliance","year":"2015","unstructured":"Worldwide Hospice Palliative Care Alliance. Palliative care and dementia statement. Worldwide hospice palliative care alliance. 2015. https:\/\/www.thewhpca.org\/2020-08-05-08-22-47\/latest-news\/item\/palliative-care-and-dementia-statement-worldwide-hospice-palliative-care-alliance. Accessed 2 Jan 2021."},{"key":"982_CR5","doi-asserted-by":"publisher","first-page":"912","DOI":"10.1001\/archinte.168.9.912","volume":"168","author":"S Hales","year":"2008","unstructured":"Hales S, Zimmermann C, Rodin G. The quality of dying and death. Arch Intern Med. 2008;168:912\u20138.","journal-title":"Arch Intern Med"},{"key":"982_CR6","doi-asserted-by":"publisher","first-page":"152","DOI":"10.1016\/j.jpainsymman.2019.07.033","volume":"59","author":"A Krikorian","year":"2020","unstructured":"Krikorian A, Maldonado C, Pastrana T. Patient's perspectives on the notion of a good death: a systematic review of the literature. J Pain Symptom Manag. 2020;59:152\u201364.","journal-title":"J Pain Symptom Manag"},{"key":"982_CR7","doi-asserted-by":"publisher","first-page":"686","DOI":"10.1017\/S1478951515001285","volume":"14","author":"L Cottrell","year":"2016","unstructured":"Cottrell L, Duggleby W. The \u201cgood death\u201d: an integrative literature review. Palliat Support Care. 2016;14:686\u2013712.","journal-title":"Palliat Support Care"},{"key":"982_CR8","doi-asserted-by":"publisher","first-page":"699","DOI":"10.3389\/fpsyt.2020.00699","volume":"11","author":"Y Eisenmann","year":"2020","unstructured":"Eisenmann Y, Golla H, Schmidt H, Voltz R, Perrar KM. Palliative care in advanced dementia. Front Psychiatry. 2020;11:699.","journal-title":"Front Psychiatry"},{"key":"982_CR9","volume-title":"Decision-making and mental capacity, NICE guideline","author":"National Institute for Health and Care Excellence","year":"2018","unstructured":"National Institute for Health and Care Excellence. Decision-making and mental capacity, NICE guideline. 2018. https:\/\/www.nice.org.uk\/guidance\/ng108\/resources\/decisionmaking-and-mental-capacity-pdf-66141544670917. Accessed 12 Oct 2021."},{"key":"982_CR10","doi-asserted-by":"publisher","first-page":"583","DOI":"10.1017\/S1478951513001259","volume":"13","author":"G Costa-Requena","year":"2013","unstructured":"Costa-Requena G, Espinosa Val M, Crist\u00f2fol R. Caregiver burden in end-of-life care: advanced cancer and final stage of dementia. Palliat Support Care. 2013;13:583\u20139.","journal-title":"Palliat Support Care"},{"key":"982_CR11","doi-asserted-by":"publisher","first-page":"1008","DOI":"10.1177\/1049909119836932","volume":"36","author":"JA Boogaard","year":"2019","unstructured":"Boogaard JA, van der Steen JT, de Boer AH, van Groenou MIB. How is end-of-life care with and without dementia associated with informal caregivers' outcomes? Am J Hosp Palliat Care. 2019;36:1008\u201315.","journal-title":"Am J Hosp Palliat Care"},{"key":"982_CR12","doi-asserted-by":"publisher","first-page":"585","DOI":"10.1016\/j.gerinurse.2020.03.008","volume":"41","author":"J Cohen-Mansfield","year":"2020","unstructured":"Cohen-Mansfield J, Brill S. Family caregiver perceptions of end of life in persons with and without dementia. Geriatr Nurs. 2020;41:585\u20138.","journal-title":"Geriatr Nurs"},{"key":"982_CR13","doi-asserted-by":"publisher","first-page":"1659","DOI":"10.1111\/jgs.17070","volume":"69","author":"L Mo","year":"2021","unstructured":"Mo L, Geng Y, Chang YK, Philip J, Collins A, Hui D. Referral criteria to specialist palliative care for patients with dementia: a systematic review. J Am Geriatr Soc. 2021;69:1659\u201369.","journal-title":"J Am Geriatr Soc"},{"key":"982_CR14","doi-asserted-by":"publisher","first-page":"21","DOI":"10.1186\/1471-2288-8-21","volume":"8","author":"S Atkins","year":"2008","unstructured":"Atkins S, Lewin S, Smith H, Engel M, Fretheim A, Volmink J. Conducting a meta-ethnography of qualitative literature: lessons learnt. BMC Med Res Methodol. 2008;8:21.","journal-title":"BMC Med Res Methodol"},{"key":"982_CR15","doi-asserted-by":"publisher","first-page":"e007664","DOI":"10.1136\/bmjopen-2015-007664","volume":"5","author":"F Webster","year":"2015","unstructured":"Webster F, Christian J, Mansfield E, Bhattacharyya O, Hawker G, Levinson W, et al. Capturing the experiences of patients across multiple complex interventions: a meta-qualitative approach. BMJ Open. 2015;5:e007664.","journal-title":"BMJ Open"},{"key":"982_CR16","doi-asserted-by":"publisher","DOI":"10.1093\/acprof:oso\/9780195387216.001.0001","volume-title":"Systematic synthesis of qualitative research, systematic synthesis of qualitative research","author":"M Saini","year":"2012","unstructured":"Saini M, Shlonsky A. Systematic synthesis of qualitative research, systematic synthesis of qualitative research. New York: Oxford University Press; 2012."},{"key":"982_CR17","doi-asserted-by":"publisher","first-page":"397","DOI":"10.3233\/JAD-140435","volume":"43","author":"KM Perrar","year":"2015","unstructured":"Perrar KM, Schmidt H, Eisenmann Y, Cremer B, Voltz R. Needs of people with severe dementia at the end-of-life: a systematic review. J Alzheimers Dis. 2015;43:397\u2013413.","journal-title":"J Alzheimers Dis"},{"key":"982_CR18","doi-asserted-by":"publisher","first-page":"3","DOI":"10.1177\/1049732316679370","volume":"27","author":"S Thorne","year":"2017","unstructured":"Thorne S. Metasynthetic madness: what kind of monster have we created? Qual Health Res. 2017;27:3\u201312.","journal-title":"Qual Health Res"},{"key":"982_CR19","doi-asserted-by":"publisher","first-page":"7","DOI":"10.1177\/1049732318795864","volume":"29","author":"K Malterud","year":"2019","unstructured":"Malterud K. The impact of evidence-based medicine on qualitative metasynthesis: benefits to be harvested and warnings to be given. Qual Health Res. 2019;29:7\u201317.","journal-title":"Qual Health Res"},{"key":"982_CR20","doi-asserted-by":"publisher","first-page":"35","DOI":"10.1186\/s12874-019-0670-7","volume":"19","author":"EF France","year":"2019","unstructured":"France EF, Uny I, Ring N, Turley RL, Maxwell M, Duncan EAS, et al. A methodological systematic review of meta-ethnography conduct to articulate the complex analytical phases. BMC Med Res Methodol. 2019;19:35.","journal-title":"BMC Med Res Methodol"},{"key":"982_CR21","doi-asserted-by":"publisher","first-page":"414","DOI":"10.1177\/1468794119862440","volume":"20","author":"OR Herber","year":"2020","unstructured":"Herber OR, Barroso J. Lessons learned from applying Sandelowski and Barroso\u2019s approach for synthesising qualitative research. Qual Res. 2020;20:414\u201331.","journal-title":"Qual Res"},{"key":"982_CR22","doi-asserted-by":"publisher","first-page":"194","DOI":"10.1111\/j.1365-2648.2012.06037.x","volume":"69","author":"D Finfgeld-Connett","year":"2013","unstructured":"Finfgeld-Connett D, Johnson ED. Literature search strategies for conducting knowledge-building and theory-generating qualitative systematic reviews. J Adv Nurs. 2013;69:194\u2013204.","journal-title":"J Adv Nurs"},{"key":"982_CR23","doi-asserted-by":"publisher","first-page":"50","DOI":"10.1186\/s12913-020-06049-w","volume":"21","author":"R Sattar","year":"2021","unstructured":"Sattar R, Lawton R, Panagioti M, Johnson J. Meta-ethnography in healthcare research: a guide to using a meta-ethnographic approach for literature synthesis. BMC Health Serv Res. 2021;21:50.","journal-title":"BMC Health Serv Res"},{"key":"982_CR24","doi-asserted-by":"publisher","first-page":"46","DOI":"10.4135\/9781412984287.n5","volume-title":"Focus groups as qualitative research","author":"DL Morgan","year":"1997","unstructured":"Morgan DL. Conducting and analyzing focus groups. In: Morgan DL, editor. Focus groups as qualitative research. Thousand Oaks: Sage Publications; 1997. p. 46\u201364."},{"key":"982_CR25","doi-asserted-by":"publisher","first-page":"293","DOI":"10.1177\/104973200129118453","volume":"10","author":"PS Kidd","year":"2000","unstructured":"Kidd PS, Parshall MB. Getting the focus and the group: enhancing analytical rigor in focus group research. Qual Health Res. 2000;10:293\u2013308.","journal-title":"Qual Health Res"},{"key":"982_CR26","doi-asserted-by":"publisher","first-page":"307","DOI":"10.1186\/s12888-018-1882-9","volume":"18","author":"L McCleary","year":"2018","unstructured":"McCleary L, Thompson GN, Venturato L, Wickson-Griffiths A, Hunter P, Sussman T, et al. Meaningful connections in dementia end of life care in long term care homes. BMC Psychiatry. 2018;18:307.","journal-title":"BMC Psychiatry"},{"key":"982_CR27","doi-asserted-by":"publisher","first-page":"657","DOI":"10.1177\/0269216317746571","volume":"32","author":"H Schmidt","year":"2018","unstructured":"Schmidt H, Eisenmann Y, Golla H, Voltz R, Perrar KM. Needs of people with advanced dementia in their final phase of life: a multi-perspective qualitative study in nursing homes. Palliat Med. 2018;32:657\u201367.","journal-title":"Palliat Med"},{"key":"982_CR28","doi-asserted-by":"publisher","first-page":"135","DOI":"10.1186\/s12877-017-0523-3","volume":"17","author":"KJ Moore","year":"2017","unstructured":"Moore KJ, Davis S, Gola A, Harrington J, Kupeli N, Vickerstaff V, et al. Experiences of end of life amongst family carers of people with advanced dementia: longitudinal cohort study with mixed methods. BMC Geriatr. 2017;17:135.","journal-title":"BMC Geriatr"},{"key":"982_CR29","doi-asserted-by":"publisher","first-page":"726","DOI":"10.1177\/0269216316673552","volume":"31","author":"N Davies","year":"2017","unstructured":"Davies N, Rait G, Maio L, Iliffe S. Family caregivers' conceptualisation of quality end-of-life care for people with dementia: a qualitative study. Palliat Med. 2017;31:726\u201333.","journal-title":"Palliat Med"},{"key":"982_CR30","doi-asserted-by":"publisher","first-page":"409","DOI":"10.1177\/0269216312464094","volume":"27","author":"KH Dening","year":"2012","unstructured":"Dening KH, Jones L, Sampson EL. Preferences for end-of-life care: a nominal group study of people with dementia and their family carers. Palliat Med. 2012;27:409\u201317.","journal-title":"Palliat Med"},{"key":"982_CR31","doi-asserted-by":"publisher","first-page":"302","DOI":"10.1186\/s12877-018-0983-0","volume":"18","author":"C Bamford","year":"2018","unstructured":"Bamford C, Lee R, McLellan E, Poole M, Harrison-Dening K, Hughes J, et al. What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholders. BMC Geriatr. 2018;18:302.","journal-title":"BMC Geriatr"},{"key":"982_CR32","doi-asserted-by":"publisher","first-page":"352","DOI":"10.1177\/1471301218774937","volume":"19","author":"L Dempsey","year":"2018","unstructured":"Dempsey L, Dowling M, Larkin P, Murphy K. Providing care for a person with late-stage dementia at home: what are carers\u2019 experiences? Dementia (London). 2018;19:352\u201374.","journal-title":"Dementia (London)"},{"key":"982_CR33","doi-asserted-by":"publisher","first-page":"1478686","DOI":"10.1080\/16549716.2018.1478686","volume":"11","author":"M Lillo-Crespo","year":"2018","unstructured":"Lillo-Crespo M, Riquelme J, Macrae R, De Abreu W, Hanson E, Holmerova I, et al. Experiences of advanced dementia care in seven European countries: implications for educating the workforce. Glob Health Action. 2018;11:1478686.","journal-title":"Glob Health Action"},{"key":"982_CR34","unstructured":"Watarai H, et al. A qualitative study to explore good death for people with dementia. In:  The 24th annual meeting of the Japanese society of palliative medicine.\u00a0Osaka:\u00a0Palliative Care Research; 2019."},{"key":"982_CR35","doi-asserted-by":"publisher","first-page":"255","DOI":"10.1017\/S1041610219001017","volume":"32","author":"M Nishimura","year":"2020","unstructured":"Nishimura M, Kohno A, van der Steen JT, Naganuma T, Nakayama T. Conceptualization of a good end-of-life experience with dementia in Japan: a qualitative study. Int Psychogeriatr. 2020;32:255\u201365.","journal-title":"Int Psychogeriatr"},{"key":"982_CR36","doi-asserted-by":"publisher","first-page":"432","DOI":"10.12968\/ijpn.2019.25.9.432","volume":"25","author":"S Bolt","year":"2019","unstructured":"Bolt S, van der Steen J, Schols J, Zwakhalen S, Meijers J. What do relatives value most in end-of-life care for people with dementia? Int J Palliat Nurs. 2019;25:432\u201342.","journal-title":"Int J Palliat Nurs"},{"key":"982_CR37","doi-asserted-by":"publisher","first-page":"322","DOI":"10.1080\/07481187.2017.1396644","volume":"42","author":"NL Dekker","year":"2018","unstructured":"Dekker NL. Moral frames for lives worth living: managing the end of life with dementia. Death Stud. 2018;42:322\u20138.","journal-title":"Death Stud"},{"key":"982_CR38","doi-asserted-by":"publisher","first-page":"1802","DOI":"10.1177\/1049732316654870","volume":"26","author":"L Birt","year":"2016","unstructured":"Birt L, Scott S, Cavers D, Campbell C, Walter F. Member checking: a tool to enhance trustworthiness or merely a nod to validation? Qual Health Res. 2016;26:1802\u201311.","journal-title":"Qual Health Res"},{"key":"982_CR39","doi-asserted-by":"publisher","first-page":"77","DOI":"10.1191\/1478088706qp063oa","volume":"3","author":"V Braun","year":"2006","unstructured":"Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77\u2013101.","journal-title":"Qual Res Psychol"},{"key":"982_CR40","first-page":"160940691773384","volume":"16","author":"LS Nowell","year":"2017","unstructured":"Nowell LS, Norris JM, White DE, Moules NJ. Thematic analysis: striving to meet the trustworthiness criteria. Int J Palliat Nurs. 2017;16:160940691773384.","journal-title":"Int J Palliat Nurs"},{"key":"982_CR41","doi-asserted-by":"publisher","DOI":"10.1016\/0147-1767(85)90062-8","volume-title":"Naturalistic inquiry","author":"YS Lincolon","year":"1985","unstructured":"Lincolon YS, Guba EG. Naturalistic inquiry. Newbury Park: Sage; 1985."},{"key":"982_CR42","doi-asserted-by":"publisher","DOI":"10.1017\/CBO9780511545801","volume-title":"Dependence and autonomy in old age: an ethical framework for long-term care","author":"G Agichi","year":"2003","unstructured":"Agichi G. Dependence and autonomy in old age: an ethical framework for long-term care. New York: Cambridge University Press; 2003."},{"key":"982_CR43","doi-asserted-by":"publisher","first-page":"34","DOI":"10.1097\/00128488-200306000-00006","volume":"5","author":"MSD Bosek","year":"2003","unstructured":"Bosek MSD, Lowry E, Lindeman DA, Burck JR, Gwyther LP. Promoting a good death for persons with dementia in nursing facilities: family caregivers' perspectives. JONAS Healthc Law Ethics Regul. 2003;5:34\u201341.","journal-title":"JONAS Healthc Law Ethics Regul"},{"key":"982_CR44","doi-asserted-by":"publisher","first-page":"150","DOI":"10.1177\/1477750917704156","volume":"12","author":"ES Dove","year":"2017","unstructured":"Dove ES, Kelly SE, Lucivero F, Machirori M, Dheensa S, Prainsack B. Beyond individualism: is there a place for relational autonomy in clinical practice and research? Clin Ethics. 2017;12:150\u201365.","journal-title":"Clin Ethics"},{"key":"982_CR45","volume-title":"Dementia a NICE-SCIE guideline on supporting people with dementia and their carers in health and social care","author":"Social Care Institute for Excellence and National Institute for Health and Clinical Excellence","year":"2007","unstructured":"Social Care Institute for Excellence and National Institute for Health and Clinical Excellence. Dementia a NICE-SCIE guideline on supporting people with dementia and their carers in health and social care. Great Britain: Alden Press; 2007."},{"key":"982_CR46","doi-asserted-by":"publisher","first-page":"99","DOI":"10.1016\/j.socscimed.2015.05.013","volume":"136-137","author":"E Borgstrom","year":"2015","unstructured":"Borgstrom E, Walter T. Choice and compassion at the end of life: a critical analysis of recent english policy discourse. Soc Sci Med. 2015;136-137:99\u2013105.","journal-title":"Soc Sci Med"},{"key":"982_CR47","doi-asserted-by":"publisher","first-page":"328","DOI":"10.1093\/ageing\/afy008","volume":"47","author":"K Pollock","year":"2018","unstructured":"Pollock K, Seymour J. Reappraising \u2018the good death\u2019 for populations in the age of ageing. Age Ageing. 2018;47:328\u201330.","journal-title":"Age Ageing"},{"key":"982_CR48","volume-title":"The loss of self: a family resource for the care of Alzheimer\u2019s disease and related disorders","author":"DEC Cohen","year":"1986","unstructured":"Cohen DEC. The loss of self: a family resource for the care of Alzheimer\u2019s disease and related disorders. New York: Norton; 1986."},{"key":"982_CR49","doi-asserted-by":"publisher","first-page":"224","DOI":"10.1016\/j.gerinurse.2013.03.001","volume":"34","author":"JL Palmer","year":"2013","unstructured":"Palmer JL. Preserving personhood of individuals with advanced dementia: lessons from family caregivers. Geriatr Nurs. 2013;34:224\u20139.","journal-title":"Geriatr Nurs"},{"key":"982_CR50","doi-asserted-by":"publisher","first-page":"488","DOI":"10.1177\/1533317514559829","volume":"30","author":"LF Lewis","year":"2015","unstructured":"Lewis LF. Caregiving for a loved one with dementia at the end of life: an emergent theory of rediscovering. Am J Alzheimers Dis Other Dement. 2015;30:488\u201396.","journal-title":"Am J Alzheimers Dis Other Dement"},{"key":"982_CR51","doi-asserted-by":"publisher","first-page":"774","DOI":"10.1177\/1471301214539690","volume":"15","author":"EG Kaufmann","year":"2016","unstructured":"Kaufmann EG, Engel SA. Dementia and well-being: a conceptual framework based on tom Kitwood\u2019s model of needs. Dementia (London). 2016;15:774\u201388.","journal-title":"Dementia (London)"},{"key":"982_CR52","doi-asserted-by":"publisher","first-page":"e0224043","DOI":"10.1371\/journal.pone.0224043","volume":"14","author":"EL Sampson","year":"2019","unstructured":"Sampson EL, Stringer A, La Frenais F, Higgins S, Doyle MJ, Laybourne A, et al. Agitation near the end of life with dementia: an ethnographic study of care. PLoS One. 2019;14:e0224043.","journal-title":"PLoS One"},{"key":"982_CR53","doi-asserted-by":"publisher","first-page":"324","DOI":"10.1016\/j.gerinurse.2007.11.001","volume":"29","author":"B Buron","year":"2008","unstructured":"Buron B. Levels of personhood: a model for dementia care. Geriatr Nurs. 2008;29:324\u201332.","journal-title":"Geriatr Nurs"},{"key":"982_CR54","doi-asserted-by":"publisher","first-page":"919","DOI":"10.1177\/0269216314526766","volume":"28","author":"N Davies","year":"2014","unstructured":"Davies N, Maio L, Rait G, Iliffe S. Quality end-of-life care for dementia: what have family carers told us so far? A narrative synthesis. Palliat Med. 2014;28:919\u201330.","journal-title":"Palliat Med"},{"key":"982_CR55","doi-asserted-by":"publisher","first-page":"885","DOI":"10.1089\/jpm.2009.0142","volume":"12","author":"C Puchalski","year":"2009","unstructured":"Puchalski C, Ferrell B, Virani R, Otis-Green S, Baird P, Bull J, et al. Improving the quality of spiritual care as a dimension of palliative care: the report of the consensus conference. J Palliat Med. 2009;12:885\u2013904.","journal-title":"J Palliat Med"},{"key":"982_CR56","first-page":"1","volume":"373","author":"IJ Higginson","year":"2021","unstructured":"Higginson IJ, Brooks D, Barclay S. Dying at home during the pandemic. BMJ. 2021;373:1\u20132.","journal-title":"BMJ"},{"key":"982_CR57","first-page":"117822421982657","volume":"12","author":"KH Dening","year":"2019","unstructured":"Dening KH, Sampson EL, De Vries K. Advance care planning in dementia: recommendations for healthcare professionals. Palliat Care. 2019;12:1178224219826579.","journal-title":"Palliat Care"},{"key":"982_CR58","doi-asserted-by":"publisher","first-page":"215","DOI":"10.1111\/scs.12046","volume":"28","author":"UH Graneheim","year":"2014","unstructured":"Graneheim UH, Johansson A, Lindgren BM. Family caregivers\u2019 experiences of relinquishing the care of a person with dementia to a nursing home: insights from a meta-ethnographic study. Scand J Caring Sci. 2014;28:215\u201324.","journal-title":"Scand J Caring Sci"}],"container-title":["BMC Palliative Care"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12904-022-00982-9.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12904-022-00982-9\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12904-022-00982-9.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,6,8]],"date-time":"2022-06-08T15:03:56Z","timestamp":1654700636000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmcpalliatcare.biomedcentral.com\/articles\/10.1186\/s12904-022-00982-9"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,6,8]]},"references-count":58,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2022,12]]}},"alternative-id":["982"],"URL":"https:\/\/doi.org\/10.1186\/s12904-022-00982-9","relation":{},"ISSN":["1472-684X"],"issn-type":[{"value":"1472-684X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,6,8]]},"assertion":[{"value":"23 January 2022","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"19 May 2022","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"8 June 2022","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"All methods were carried out in accordance with \u201cEthical guidelines on medical research for human\u201d (Ministry of Education, Culture, Sports, Science and Technology, Ministry of Health, Labor and Welfare of Japan, April 2015), the Helsinki Declaration (2008), and in compliance with the EU General Data Protection Regulation (2016). This study was approved by the ethics committee of the Graduate School and Faculty of Medicine Kyoto University (R1924\u20131). All co-researchers provided written informed consent.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare that they have no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"106"}}