{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,21]],"date-time":"2026-07-21T08:39:38Z","timestamp":1784623178219,"version":"3.55.0"},"reference-count":46,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2025,2,5]],"date-time":"2025-02-05T00:00:00Z","timestamp":1738713600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100015442","name":"Global Brain Health Institute","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100015442","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100015442","name":"Global Brain Health Institute","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100015442","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["2P30AG062421"],"award-info":[{"award-number":["2P30AG062421"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["5T32AG049663"],"award-info":[{"award-number":["5T32AG049663"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["K01AG059831"],"award-info":[{"award-number":["K01AG059831"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["K24AG068312"],"award-info":[{"award-number":["K24AG068312"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["P30AG044281"],"award-info":[{"award-number":["P30AG044281"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["R01AG031189"],"award-info":[{"award-number":["R01AG031189"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["R01AG062562"],"award-info":[{"award-number":["R01AG062562"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["R24AG065175"],"award-info":[{"award-number":["R24AG065175"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["R56AG055619"],"award-info":[{"award-number":["R56AG055619"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["T35AG026736"],"award-info":[{"award-number":["T35AG026736"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000133","name":"Agency for Healthcare Research and Quality","doi-asserted-by":"publisher","award":["T32HS022241"],"award-info":[{"award-number":["T32HS022241"]}],"id":[{"id":"10.13039\/100000133","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["agsjournals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J American Geriatrics Society"],"published-print":{"date-parts":[[2025,5]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>One in three older adults in the United States dies with or from dementia. Little is known about whether end\u2010of\u2010life caregiving experiences differ by dementia diagnosis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We conducted a secondary analysis of two qualitative studies. Participants included caregivers of decedents with \u201crapid\u2010type\u201d sporadic Creutzfeldt\u2013Jakob Disease (sCJD, survival prognosis of &lt;\u20091\u2009year) or \u201cslow\u2010type\u201d Alzheimer's disease and related dementias (survival prognosis of 5\u201320\u2009years). We used reflexive thematic analysis and a novel method, poetic analysis, to compare end\u2010of\u2010life caregiving experiences.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      \u201cRapid\u2010type\u201d caregivers (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200912) had a median age of 59 (range 45\u201373) years; 6 were female, and 9 were spouses. \u201cSlow\u2010type\u201d caregivers (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200915) had a median age of 69 (45\u201382) years; 9 were female, and 11 were spouses. We identified three main areas of differential experience that were influenced by syndrome rarity and participation in research yet hinged on\n                      <jats:italic>time<\/jats:italic>\n                      .\n                      <jats:italic>Time enables preparation<\/jats:italic>\n                      : Due to the rarity of sCJD, \u201crapid\u2010type\u201d caregivers struggled to obtain accurate diagnoses, which prevented preparation for end\u2010of\u2010life care. Weeks or months before death, specialists simultaneously disclosed sCJD diagnoses and recommended hospice. In contrast, for \u201cslow\u2010type\u201d dementia, preparation began years before death.\n                      <jats:italic>Time complicates conflict<\/jats:italic>\n                      : Most \u201crapid\u2010type\u201d caregivers described\n                      <jats:italic>conflicts<\/jats:italic>\n                      , rarely resolved before death, about code status, treatment, or care location decisions. Fewer \u201cslow\u2010type\u201d caregivers experienced such conflicts, and these were typically resolved before death; instead, they experienced conflict between needs and what the care system provides.\n                      <jats:italic>Postmortem experience contrasts with perimortem<\/jats:italic>\n                      : For \u201crapid\u2010type\u201d dementia, short perimortem periods contrasted with elongated and often intense postmortem logistics and grief. For \u201cslow\u2010type\u201d caregivers, preparation and perimortem grieving typically led to shorter duration and minimally intrusive postmortem logistics and grief.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>End\u2010of\u2010life care for dementia should attend to and support axes of differential experience based on diagnosis and rarity, time since symptom onset (affecting preparation and conflict resolution), and participation in research studies.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/jgs.19382","type":"journal-article","created":{"date-parts":[[2025,2,5]],"date-time":"2025-02-05T08:10:20Z","timestamp":1738743020000},"page":"1406-1418","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["\u201cBy the Time We Knew \u2026\u201d: Poetic Analysis of End\u2010of\u2010Life Caregiving Experiences for Rapidly Progressive and Slower\u2010Duration Dementia Syndromes"],"prefix":"10.1111","volume":"73","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5373-3011","authenticated-orcid":false,"given":"Krista L.","family":"Harrison","sequence":"first","affiliation":[{"name":"Division of Geriatrics, School of Medicine University of California  San Francisco California USA"},{"name":"Philip R. Lee Institute for Health Policy Studies University of California  San Francisco California USA"},{"name":"The Global Brain Health Institute University of California  San Francisco California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6717-0520","authenticated-orcid":false,"given":"Brianna E.","family":"Morgan","sequence":"additional","affiliation":[{"name":"Division of Geriatrics and Palliative Care, Grossman School of Medicine New York University  New York City New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Juliana","family":"Friend","sequence":"additional","affiliation":[{"name":"Division of Geriatrics, School of Medicine University of California  San Francisco California USA"},{"name":"Philip R. Lee Institute for Health Policy Studies University of California  San Francisco California USA"},{"name":"Department of Epidemiology &amp; Biostatistics University of California  San Francisco California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah B.","family":"Garrett","sequence":"additional","affiliation":[{"name":"Philip R. Lee Institute for Health Policy Studies University of California  San Francisco California USA"},{"name":"Department of Humanities and Social Sciences University of California  San Francisco California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Looi","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine Sutter Roseville Medical Center  Roseville California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Madina","family":"Halim","sequence":"additional","affiliation":[{"name":"Department of Neurology University of California  San Francisco California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer E.","family":"James","sequence":"additional","affiliation":[{"name":"Institute for Health and Aging, School of Nursing University of California  San Francisco California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicole D.","family":"Boyd","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine University of Washington  Seattle Washington USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joni","family":"Gilissen","sequence":"additional","affiliation":[{"name":"Research Center Care in Connection, Department of Nursing and Midwifery Karel de Grote University of Applied Sciences and Arts  Antwerp Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael D.","family":"Geschwind","sequence":"additional","affiliation":[{"name":"Weill Institute for Neurosciences, Department of Neurology, Memory and Aging Center University of California  San Francisco California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christine S.","family":"Ritchie","sequence":"additional","affiliation":[{"name":"Department of Medicine, Massachusetts General Hospital, and Harvard Medical School The Mongan Institute Center for Aging and Serious Illness and the Division of Palliative Care and Geriatric Medicine  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alexander K.","family":"Smith","sequence":"additional","affiliation":[{"name":"Division of Geriatrics, School of Medicine University of California  San Francisco California USA"},{"name":"San Francisco VA Medical Center  San Francisco California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,2,5]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1002\/alz.13809"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/b978\u20100\u2010444\u201063945\u20105.00021\u20100"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1001\/2013.jamaneurol.79"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.3233\/JAD\u2010215203"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1177\/0269216318801750"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2016.08.010"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.1215\/03616878\u20103620893"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2010.1572"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamainternmed.2023.6548"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.18.02386"},{"key":"e_1_2_11_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2014.07.003"},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.1111\/ejh.14035"},{"key":"e_1_2_11_14_1","unstructured":"Understanding Different Types of Dementia \u201cNational Institute on Aging \u201daccessed July 26 2024 https:\/\/www.nia.nih.gov\/health\/alzheimers\u2010and\u2010dementia\/understanding\u2010different\u2010types\u2010dementia."},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.3233\/JAD\u2010201326"},{"key":"e_1_2_11_16_1","doi-asserted-by":"publisher","DOI":"10.1377\/hlthaff.2021.00259"},{"key":"e_1_2_11_17_1","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2021.0055"},{"key":"e_1_2_11_18_1","doi-asserted-by":"publisher","DOI":"10.1111\/jgs.18130"},{"issue":"5","key":"e_1_2_11_19_1","first-page":"e568","article-title":"Hospice Use Among Medicare Beneficiaries With Parkinson Disease and Dementia With Lewy Bodies","volume":"67","author":"Bock M. A.","year":"2024","journal-title":"JAMA Network Open"},{"key":"e_1_2_11_20_1","unstructured":"\u201cGuiding an Improved Dementia Experience (GUIDE) Model|CMS \u201daccessed July 26 2024 https:\/\/www.cms.gov\/priorities\/innovation\/innovation\u2010models\/guide."},{"key":"e_1_2_11_21_1","unstructured":"Group TL \u201cCMS GUIDE Payment Methodology Paper.\u201d"},{"key":"e_1_2_11_22_1","unstructured":"J.Parker [UPDATED] \u201cRep. Earl Blumenauer Plans Landmark Hospice Reform Bill \u201dHospice News June 13 2024. accessed July 26 2024 https:\/\/hospicenews.com\/2024\/06\/13\/rep\u2010earl\u2010blumenauer\u2010plans\u2010landmark\u2010hospice\u2010reform\u2010bill\/."},{"key":"e_1_2_11_23_1","unstructured":"Hospice CARE Act \u201cSDAHO \u201d2024June 26 2024 accessed July 26 2024 https:\/\/sdaho.org\/2024\/06\/26\/hospice\u2010care\u2010act\u20102024\/."},{"key":"e_1_2_11_24_1","doi-asserted-by":"publisher","DOI":"10.1080\/19336896.2022.2043077"},{"key":"e_1_2_11_25_1","doi-asserted-by":"publisher","DOI":"10.1177\/08919887221135552"},{"key":"e_1_2_11_26_1","doi-asserted-by":"publisher","DOI":"10.3233\/JAD\u2010220536"},{"key":"e_1_2_11_27_1","doi-asserted-by":"publisher","DOI":"10.1177\/10499091231155601"},{"key":"e_1_2_11_28_1","doi-asserted-by":"publisher","DOI":"10.1093\/geront\/gnae014"},{"key":"e_1_2_11_29_1","doi-asserted-by":"publisher","DOI":"10.1177\/02692163241234800"},{"key":"e_1_2_11_30_1","doi-asserted-by":"publisher","DOI":"10.1080\/14780887.2020.1769238"},{"key":"e_1_2_11_31_1","doi-asserted-by":"publisher","DOI":"10.1080\/2159676X.2019.1628806"},{"key":"e_1_2_11_32_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_11_33_1","unstructured":"T. A.Doing Reflexive \u201cThematic Analysis \u201daccessed July 25 2024 https:\/\/www.thematicanalysis.net\/doing\u2010reflexive\u2010ta\/."},{"key":"e_1_2_11_34_1","doi-asserted-by":"publisher","DOI":"10.1177\/1077800415572396"},{"key":"e_1_2_11_35_1","doi-asserted-by":"publisher","DOI":"10.1097\/NNR.0000000000000580"},{"key":"e_1_2_11_36_1","doi-asserted-by":"publisher","DOI":"10.1111\/jan.16054"},{"key":"e_1_2_11_37_1","doi-asserted-by":"publisher","DOI":"10.1093\/geront\/gnad056"},{"key":"e_1_2_11_38_1","doi-asserted-by":"publisher","DOI":"10.1177\/16094069231183620"},{"key":"e_1_2_11_39_1","doi-asserted-by":"publisher","DOI":"10.1212\/CPJ.0000000000000111"},{"key":"e_1_2_11_40_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474\u20104422(20)30477\u20104"},{"key":"e_1_2_11_41_1","doi-asserted-by":"publisher","DOI":"10.1101\/cshperspect.a033134"},{"key":"e_1_2_11_42_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2013.10.009"},{"key":"e_1_2_11_43_1","doi-asserted-by":"publisher","DOI":"10.1177\/0049124118799377"},{"key":"e_1_2_11_44_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732320921835"},{"key":"e_1_2_11_45_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13012\u2010019\u20100853\u2010y"},{"key":"e_1_2_11_46_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13012\u2010021\u201001111\u20105"},{"key":"e_1_2_11_47_1","volume-title":"A Poetry Handbook","author":"Oliver M.","year":"1994"}],"container-title":["Journal of the American Geriatrics Society"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/agsjournals.onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jgs.19382","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,11,3]],"date-time":"2025-11-03T15:10:42Z","timestamp":1762182642000},"score":1,"resource":{"primary":{"URL":"https:\/\/agsjournals.onlinelibrary.wiley.com\/doi\/10.1111\/jgs.19382"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,2,5]]},"references-count":46,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2025,5]]}},"alternative-id":["10.1111\/jgs.19382"],"URL":"https:\/\/doi.org\/10.1111\/jgs.19382","archive":["Portico"],"relation":{},"ISSN":["0002-8614","1532-5415"],"issn-type":[{"value":"0002-8614","type":"print"},{"value":"1532-5415","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,2,5]]},"assertion":[{"value":"2024-09-16","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-12-26","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-02-05","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}