{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,15]],"date-time":"2026-10-15T11:28:21Z","timestamp":1792063701747,"version":"4.4.0"},"reference-count":22,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2019,2,25]],"date-time":"2019-02-25T00:00:00Z","timestamp":1551052800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["R01AG037483"],"award-info":[{"award-number":["R01AG037483"]}],"id":[{"id":"10.13039\/100000049","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":[[2019,6]]},"abstract":"<jats:sec>\n                    <jats:title>BACKGROUND\/OBJECTIVES<\/jats:title>\n                    <jats:p>In late\u2010stage dementia, families often prioritize quality of life (QoL) and comfort, yet little research examines factors impacting QoL. We sought to (1) describe temporal trends in QoL in late\u2010stage dementia, and (2) explore associations between patient characteristics, care interventions, and QoL.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>DESIGN<\/jats:title>\n                    <jats:p>Secondary analysis of data from the Goals of Care clinical trial.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>SETTING<\/jats:title>\n                    <jats:p>Twenty\u2010two nursing homes (NHs) in North Carolina.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>PARTICIPANTS<\/jats:title>\n                    <jats:p>Family decision makers for residents with late\u2010stage dementia.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>MEASUREMENTS<\/jats:title>\n                    <jats:p>Family\u2010reported QoL at baseline and at 9 months using the Alzheimer's Disease\u2010Related Quality of Life Instrument (ADRQL) with five subscales scored 0 to 100 (higher scores indicate better quality). Families reported demographics, primary goal of care, and described their perceptions of residents\u2019 QoL. Chart reviews provided data on hospital transfers, treatment plans, and hospice enrollment. We ran mixed effects models of hypothesized variables and change in ADRQL over time.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>RESULTS<\/jats:title>\n                    <jats:p>\n                      The study sample was 241 dyads of residents with late\u2010stage dementia and family decision makers. Family\u2010reported ADRQL scores reflected moderately good QoL at baseline and at 9 months (69.1 vs 66.9;\n                      <jats:italic>p<\/jats:italic>\n                      = .106). Subscales for Awareness of Self (62.8; Global Deterioration Scale [GDS] = 5; 30.5; GDS = 7;\n                      <jats:italic>p<\/jats:italic>\n                      &gt; .01) and Enjoyment of Activities (53.4; GDS = 5; 39.4; GDS = 7;\n                      <jats:italic>p<\/jats:italic>\n                      &gt; .01) were lower in later stage disease. Qualitatively, family members associated better QoL for dementia with (1) activities, (2) opportunities to leave NH, (3) NH\u2010structured activities, (4) attentiveness in NH, and (5) passive interaction. ADRQL at 9 months was associated with later dementia stage and referral to hospice (\n                      <jats:italic>p<\/jats:italic>\n                      &lt; .01). Age (\n                      <jats:italic>p<\/jats:italic>\n                      = .004) and hospice enrollment were significantly associated with a larger decrease in ADRQL over 9 months (\n                      <jats:italic>p<\/jats:italic>\n                      = .019). A primary goal of comfort was associated with a larger increase in ADRQL (\n                      <jats:italic>p<\/jats:italic>\n                      = .022).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>CONCLUSION<\/jats:title>\n                    <jats:p>Families judge QoL to be moderately good in late\u2010stage dementia. They perceive activities, opportunities to leave the NH, and quality of interpersonal care as ways to improve dementia\u2010specific QoL.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/jgs.15794","type":"journal-article","created":{"date-parts":[[2019,2,26]],"date-time":"2019-02-26T00:32:42Z","timestamp":1551141162000},"page":"1189-1196","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":17,"title":["Quality of Life with Late\u2010Stage Dementia: Exploring Opportunities to Intervene"],"prefix":"10.1111","volume":"67","author":[{"given":"Natalie C.","family":"Ernecoff","sequence":"first","affiliation":[{"name":"Cecil G. Sheps Center for Health Services Research University of North Carolina Chapel Hill North Carolina"},{"name":"Department of Health Policy and Management Gillings School of Global Public Health, University of North Carolina Chapel Hill North Carolina"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Feng\u2010Chang","family":"Lin","sequence":"additional","affiliation":[{"name":"Cecil G. Sheps Center for Health Services Research University of North Carolina Chapel Hill North Carolina"},{"name":"Department of Biostatistics Gillings School of Global Public Health, University of North Carolina Chapel Hill North Carolina"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathryn L.","family":"Wessell","sequence":"additional","affiliation":[{"name":"Cecil G. Sheps Center for Health Services Research University of North Carolina Chapel Hill North Carolina"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura C.","family":"Hanson","sequence":"additional","affiliation":[{"name":"Cecil G. Sheps Center for Health Services Research University of North Carolina Chapel Hill North Carolina"},{"name":"Division of Geriatric Medicine &amp; Palliative Care Program University of North Carolina Chapel Hill North Carolina"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2019,2,25]]},"reference":[{"key":"e_1_2_6_2_1","doi-asserted-by":"publisher","DOI":"10.1001\/archneur.60.8.1119"},{"key":"e_1_2_6_3_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa0902234"},{"key":"e_1_2_6_4_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-011-0044-z"},{"key":"e_1_2_6_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1099-1166(200002)15:2<181::AID-GPS96>3.0.CO;2-I"},{"key":"e_1_2_6_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1532-5415.2010.03170.x"},{"key":"e_1_2_6_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/gps.796"},{"key":"e_1_2_6_8_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamainternmed.2016.7031"},{"key":"e_1_2_6_9_1","doi-asserted-by":"publisher","DOI":"10.1177\/1740774516650863"},{"key":"e_1_2_6_10_1","doi-asserted-by":"publisher","DOI":"10.1176\/ajp.139.9.1136"},{"key":"e_1_2_6_11_1","doi-asserted-by":"publisher","DOI":"10.1097\/WAD.0b013e31819b02bc"},{"key":"e_1_2_6_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0885-3924(98)00131-6"},{"key":"e_1_2_6_13_1","doi-asserted-by":"publisher","DOI":"10.1207\/S15324796ABM2401_06"},{"key":"e_1_2_6_14_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2010.1572"},{"key":"e_1_2_6_15_1","doi-asserted-by":"publisher","DOI":"10.1002\/1098-240X(200008)23:4<334::AID-NUR9>3.0.CO;2-G"},{"key":"e_1_2_6_16_1","first-page":"76","volume-title":"Health Status and Health Policy","author":"Patrick DL","year":"1993"},{"key":"e_1_2_6_17_1","first-page":"CD009812","article-title":"Personally\u2010tailored activities for improving psychosocial outcomes for people with dementia in long\u2010term care","volume":"2","author":"M\u00f6hler R","year":"2018","journal-title":"Cochrane Database Syst Rev"},{"key":"e_1_2_6_18_1","doi-asserted-by":"publisher","DOI":"10.1891\/1078-4535.21.1.47"},{"issue":"3","key":"e_1_2_6_19_1","first-page":"114","article-title":"The quality of life in late\u2010stage dementia (QUALID) scale","volume":"1","author":"Weiner MF","year":"2000","journal-title":"J Am Med Dir Assoc"},{"key":"e_1_2_6_20_1","doi-asserted-by":"publisher","DOI":"10.1002\/gps.2460"},{"issue":"4","key":"e_1_2_6_21_1","first-page":"62","article-title":"Enhancing the quality of life for advanced dementia patients","volume":"89","author":"Baker NK","year":"2008","journal-title":"Health Prog"},{"issue":"6","key":"e_1_2_6_22_1","first-page":"484","article-title":"Silent and invisible; nursing home residents with advanced dementia","volume":"11","author":"Simard J","year":"2007","journal-title":"J Nutr Health Aging"},{"key":"e_1_2_6_23_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.cger.2011.01.002"}],"container-title":["Journal of the American Geriatrics Society"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fjgs.15794","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/agsjournals.onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jgs.15794","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,11,3]],"date-time":"2025-11-03T12:23:58Z","timestamp":1762172638000},"score":1,"resource":{"primary":{"URL":"https:\/\/agsjournals.onlinelibrary.wiley.com\/doi\/10.1111\/jgs.15794"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,2,25]]},"references-count":22,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2019,6]]}},"alternative-id":["10.1111\/jgs.15794"],"URL":"https:\/\/doi.org\/10.1111\/jgs.15794","archive":["Portico"],"relation":{},"ISSN":["0002-8614","1532-5415"],"issn-type":[{"value":"0002-8614","type":"print"},{"value":"1532-5415","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019,2,25]]},"assertion":[{"value":"2018-09-12","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2018-12-26","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2019-02-25","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}