{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,5]],"date-time":"2026-06-05T02:43:46Z","timestamp":1780627426452,"version":"3.54.1"},"reference-count":60,"publisher":"BMJ","issue":"5","license":[{"start":{"date-parts":[[2021,5,26]],"date-time":"2021-05-26T00:00:00Z","timestamp":1621987200000},"content-version":"unspecified","delay-in-days":25,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["R01AG068128"],"award-info":[{"award-number":["R01AG068128"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2021,5,14]]},"published-print":{"date-parts":[[2021,5]]},"abstract":"<jats:sec><jats:title>Introduction<\/jats:title><jats:p>Dementia with Lewy bodies (DLB) is one of the most common degenerative dementias. Despite the fact that most individuals with DLB die from complications of the disease, little is known regarding what factors predict impending end of life or are associated with a quality end of life.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods and analysis<\/jats:title><jats:p>This is a multisite longitudinal cohort study. Participants are being recruited from five academic centres providing subspecialty DLB care and volunteers through the Lewy Body Dementia Association (not receiving specialty care). Dyads must be US residents, include individuals with a clinical diagnosis of DLB and at least moderate-to-severe dementia and include the primary caregiver, who must pass a brief cognitive screen. The first dyad was enrolled 25 February 2021; recruitment is ongoing. Dyads will attend study visits every 6 months through the end of life or 3 years. Study visits will occur in-person or virtually. Measures include demographics, DLB characteristics, caregiver considerations, quality of life and satisfaction with end-of-life experiences. For dyads where the individual with DLB dies, the caregiver will complete a final study visit 3 months after the death to assess grief, recovery and quality of the end-of-life experience. Terminal trend models will be employed to identify significant predictors of approaching end of life (death in the next 6\u2009months). Similar models will assess caregiver factors (eg, grief, satisfaction with end-of-life experience) after the death of the individual with DLB. A qualitative descriptive analysis approach will evaluate interview transcripts regarding end-of-life experiences.<\/jats:p><\/jats:sec><jats:sec><jats:title>Ethics and dissemination<\/jats:title><jats:p>This study was approved by the University of Florida institutional review board (IRB202001438) and is listed on clinicaltrials.gov (<jats:ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" ext-link-type=\"clintrialgov\" xlink:href=\"NCT04829656\">NCT04829656<\/jats:ext-link>). Data sharing follows National Institutes of Health policies. Study results will be disseminated via traditional scientific strategies (conferences, publications) and through collaborating with the Lewy Body Dementia Association, National Institute on Aging and other partnerships.<\/jats:p><\/jats:sec>","DOI":"10.1136\/bmjopen-2020-047554","type":"journal-article","created":{"date-parts":[[2021,5,26]],"date-time":"2021-05-26T18:37:58Z","timestamp":1622054278000},"page":"e047554","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":8,"title":["Protocol for an observational cohort study identifying factors predicting accurately end of life in dementia with Lewy bodies and promoting quality end-of-life experiences: the PACE-DLB study"],"prefix":"10.1136","volume":"11","clinical-trial-number":[{"clinical-trial-number":"nct04829656","registry":"10.18810\/clinical-trials-gov"},{"clinical-trial-number":"nct04829656","registry":"10.18810\/clinical-trials-gov"}],"author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2163-1907","authenticated-orcid":false,"given":"Melissa J","family":"Armstrong","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Henry L","family":"Paulson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susan M","family":"Maixner","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julie A","family":"Fields","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angela M","family":"Lunde","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bradley F","family":"Boeve","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carol","family":"Manning","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"James E","family":"Galvin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angela S","family":"Taylor","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Zhigang","family":"Li","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2021,5,26]]},"reference":[{"key":"2024102810025857000_11.5.e047554.1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(17)30074-1"},{"key":"2024102810025857000_11.5.e047554.2","doi-asserted-by":"crossref","first-page":"365","DOI":"10.21037\/apm.2017.06.13","article-title":"Barriers to palliative care for advanced dementia: a scoping review","volume":"6","author":"Erel","year":"2017","journal-title":"Ann Palliat Med"},{"key":"2024102810025857000_11.5.e047554.3","doi-asserted-by":"crossref","first-page":"67","DOI":"10.1111\/jgs.15608","article-title":"Cause of death and end-of-life experiences in individuals with dementia with Lewy bodies","volume":"67","author":"Armstrong","year":"2019","journal-title":"J Am Geriatr Soc"},{"key":"2024102810025857000_11.5.e047554.4","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0217039","article-title":"End-Of-Life experiences in dementia with Lewy bodies: qualitative interviews with former caregivers","volume":"14","author":"Armstrong","year":"2019","journal-title":"PLoS One"},{"key":"2024102810025857000_11.5.e047554.5","doi-asserted-by":"publisher","DOI":"10.3233\/JAD-140435"},{"key":"2024102810025857000_11.5.e047554.6","doi-asserted-by":"publisher","DOI":"10.1097\/00002093-200607000-00008"},{"key":"2024102810025857000_11.5.e047554.7","doi-asserted-by":"crossref","first-page":"535.e13","DOI":"10.1016\/j.jamda.2015.02.012","article-title":"Critical decisions for older people with advanced dementia: a prospective study in long-term institutions and district home care","volume":"16","author":"Toscani","year":"2015","journal-title":"J Am Med Dir Assoc"},{"key":"2024102810025857000_11.5.e047554.8","doi-asserted-by":"publisher","DOI":"10.1097\/WAD.0b013e318293b380"},{"key":"2024102810025857000_11.5.e047554.9","doi-asserted-by":"publisher","DOI":"10.1177\/0269216317726443"},{"key":"2024102810025857000_11.5.e047554.10","doi-asserted-by":"publisher","DOI":"10.1212\/01.wnl.0000247041.63081.98"},{"key":"2024102810025857000_11.5.e047554.11","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2017-017504"},{"key":"2024102810025857000_11.5.e047554.12","doi-asserted-by":"publisher","DOI":"10.1111\/jgs.14421"},{"key":"2024102810025857000_11.5.e047554.13","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000004058"},{"key":"2024102810025857000_11.5.e047554.14","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2010.1572"},{"key":"2024102810025857000_11.5.e047554.15","doi-asserted-by":"crossref","first-page":"2533","DOI":"10.1056\/NEJMcp1412652","article-title":"Advanced dementia","volume":"373","author":"Mitchell","year":"2015","journal-title":"N Engl J Med"},{"key":"2024102810025857000_11.5.e047554.16","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMsa035373"},{"key":"2024102810025857000_11.5.e047554.17","doi-asserted-by":"crossref","first-page":"17","DOI":"10.1016\/j.jpainsymman.2015.01.006","article-title":"Timing of survey administration after hospice patient death: stability of bereaved respondents","volume":"50","author":"DiBiasio","year":"2015","journal-title":"J Pain Symptom Manage"},{"key":"2024102810025857000_11.5.e047554.18","first-page":"249","article-title":"The quick dementia rating system (QDRS): a rapid dementia staging tool","volume":"1","author":"Galvin","year":"2015","journal-title":"Alzheimers Dement"},{"key":"2024102810025857000_11.5.e047554.19","doi-asserted-by":"crossref","first-page":"971","DOI":"10.1002\/gps.3916","article-title":"Feasibility, internal consistency and covariates of TICS-m (telephone interview for cognitive status-modified) in a population-based sample: findings from the KORA-Age study","volume":"28","author":"Lacruz","year":"2013","journal-title":"Int J Geriatr Psychiatry"},{"key":"2024102810025857000_11.5.e047554.20","first-page":"316","article-title":"Improving the clinical detection of Lewy body dementia with the Lewy body composite risk score","volume":"1","author":"Galvin","year":"2015","journal-title":"Alzheimers Dement"},{"key":"2024102810025857000_11.5.e047554.21","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1099-1166(200003)15:3<267::AID-GPS107>3.0.CO;2-7"},{"key":"2024102810025857000_11.5.e047554.22","unstructured":"Fahn S , Elton RL , UPDRS program members . Unified Parkinson\u2019s disease rating scale. In: Fahn S , Marsden CD , Goldstein M , et al , eds. Recent developments in Parkinson\u2019s disease. Vol. 2. Florham Park, NJ: Macmillan Healthcare Information, 1987: 153\u201363."},{"key":"2024102810025857000_11.5.e047554.23","doi-asserted-by":"crossref","first-page":"1730","DOI":"10.1111\/jgs.15455","article-title":"Late transitions and bereaved family member perceptions of quality of end-of-life care","volume":"66","author":"Makaroun","year":"2018","journal-title":"J Am Geriatr Soc"},{"key":"2024102810025857000_11.5.e047554.24","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.44.12.2308"},{"key":"2024102810025857000_11.5.e047554.25","doi-asserted-by":"publisher","DOI":"10.1176\/appi.neuropsych.12.2.233"},{"key":"2024102810025857000_11.5.e047554.26","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.62.2.181"},{"key":"2024102810025857000_11.5.e047554.27","doi-asserted-by":"publisher","DOI":"10.1192\/bjp.177.3.252"},{"key":"2024102810025857000_11.5.e047554.28","doi-asserted-by":"publisher","DOI":"10.1016\/j.sleep.2010.12.009"},{"key":"2024102810025857000_11.5.e047554.29","doi-asserted-by":"publisher","DOI":"10.1093\/sleep\/14.6.540"},{"key":"2024102810025857000_11.5.e047554.30","doi-asserted-by":"publisher","DOI":"10.1097\/00002093-200310000-00002"},{"key":"2024102810025857000_11.5.e047554.31","doi-asserted-by":"publisher","DOI":"10.1097\/WAD.0b013e318065c4a9"},{"key":"2024102810025857000_11.5.e047554.32","doi-asserted-by":"crossref","first-page":"222","DOI":"10.1177\/1049909118800281","article-title":"Anticholinergic burden in hospice patients with dementia","volume":"36","author":"Williams","year":"2019","journal-title":"Am J Hosp Palliat Care"},{"key":"2024102810025857000_11.5.e047554.33","doi-asserted-by":"publisher","DOI":"10.1016\/j.jamda.2008.11.005"},{"key":"2024102810025857000_11.5.e047554.34","doi-asserted-by":"publisher","DOI":"10.1093\/ageing\/afu145"},{"key":"2024102810025857000_11.5.e047554.35","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0193398","article-title":"How best to assess quality of life in informal carers of people with dementia; a systematic review of existing outcome measures","volume":"13","author":"Dow","year":"2018","journal-title":"PLoS One"},{"key":"2024102810025857000_11.5.e047554.36","doi-asserted-by":"publisher","DOI":"10.1037\/a0014303"},{"key":"2024102810025857000_11.5.e047554.37","doi-asserted-by":"publisher","DOI":"10.1093\/geronb\/57.1.P74"},{"key":"2024102810025857000_11.5.e047554.38","doi-asserted-by":"crossref","first-page":"e325","DOI":"10.1093\/geront\/gny004","article-title":"Validating the revised scale for caregiving self-efficacy: a cross-national review","volume":"59","author":"Steffen","year":"2019","journal-title":"Gerontologist"},{"key":"2024102810025857000_11.5.e047554.39","doi-asserted-by":"publisher","DOI":"10.1207\/s15327752jpa5503&4_17"},{"key":"2024102810025857000_11.5.e047554.40","doi-asserted-by":"crossref","first-page":"258","DOI":"10.1097\/NUR.0000000000000148","article-title":"Psychometric properties of the multidimensional scale of perceived social support","volume":"29","author":"Hardan-Khalil","year":"2015","journal-title":"Clin Nurse Spec"},{"key":"2024102810025857000_11.5.e047554.41","unstructured":"Hughes S , Lepore M , Walberg D . NADRC: evaluating dementia services and supports: instrument resource list. administration for community living, U.S. department of health and human services, 2018. Available: https:\/\/nadrc.acl.gov\/node\/70"},{"key":"2024102810025857000_11.5.e047554.42","doi-asserted-by":"publisher","DOI":"10.1207\/s15327558ijbm0401_6"},{"key":"2024102810025857000_11.5.e047554.43","doi-asserted-by":"crossref","DOI":"10.1186\/s12877-017-0523-3","article-title":"Experiences of end of life amongst family carers of people with advanced dementia: longitudinal cohort study with mixed methods","volume":"17","author":"Moore","year":"2017","journal-title":"BMC Geriatr"},{"key":"2024102810025857000_11.5.e047554.44","doi-asserted-by":"publisher","DOI":"10.1093\/geront\/41.5.652"},{"key":"2024102810025857000_11.5.e047554.45","doi-asserted-by":"publisher","DOI":"10.1093\/geront\/gnq055"},{"key":"2024102810025857000_11.5.e047554.46","doi-asserted-by":"publisher","DOI":"10.1080\/07481180590916335"},{"key":"2024102810025857000_11.5.e047554.47","doi-asserted-by":"crossref","first-page":"250","DOI":"10.1080\/13607863.2018.1533520","article-title":"Caregivers\" resilience in mild and moderate Alzheimer\"s disease","volume":"24","author":"Rosa","year":"2020","journal-title":"Aging Ment Health"},{"key":"2024102810025857000_11.5.e047554.48","doi-asserted-by":"crossref","first-page":"408","DOI":"10.1590\/1980-57642018dn12-040011","article-title":"Family caregivers of elderly with dementia relationship between religiosity, resilience, quality of life and burden","volume":"12","author":"Pessotti","year":"2018","journal-title":"Dement Neuropsychol"},{"key":"2024102810025857000_11.5.e047554.49","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2015.0039"},{"key":"2024102810025857000_11.5.e047554.50","doi-asserted-by":"publisher","DOI":"10.1186\/1472-684X-12-25"},{"key":"2024102810025857000_11.5.e047554.51","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2008.08.010"},{"key":"2024102810025857000_11.5.e047554.52","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2019.103208"},{"key":"2024102810025857000_11.5.e047554.53","doi-asserted-by":"crossref","first-page":"4692","DOI":"10.1002\/sim.7445","article-title":"A semiparametric joint model for terminal trend of quality of life and survival in palliative care research","volume":"36","author":"Li","year":"2017","journal-title":"Stat Med"},{"key":"2024102810025857000_11.5.e047554.54","doi-asserted-by":"publisher","DOI":"10.1002\/sim.5635"},{"key":"2024102810025857000_11.5.e047554.55","doi-asserted-by":"crossref","first-page":"273","DOI":"10.1111\/j.1467-9868.2011.00771.x","article-title":"Regression shrinkage and selection via the LASSO: a retrospective","volume":"73","author":"Tibshirani","year":"2011","journal-title":"J R Statist Soc B"},{"key":"2024102810025857000_11.5.e047554.56","doi-asserted-by":"publisher","DOI":"10.1214\/09-AOS729"},{"key":"2024102810025857000_11.5.e047554.57","doi-asserted-by":"crossref","first-page":"2504","DOI":"10.1214\/18-AOS1755","article-title":"A knockoff filter for high-dimensional selective inference","volume":"47","author":"Barber","year":"2019","journal-title":"Ann. Statist."},{"key":"2024102810025857000_11.5.e047554.58","unstructured":"Gan G , Ma C , Wu J . Algorithms, and applications. ASA-SIAM series on statistics and applied probability. Philadelphia, PA, Alexandria, VA: ASA, SIAM, 2007."},{"key":"2024102810025857000_11.5.e047554.59","doi-asserted-by":"publisher","DOI":"10.1007\/s11121-011-0201-1"},{"key":"2024102810025857000_11.5.e047554.60","doi-asserted-by":"publisher","DOI":"10.1177\/1937586715592632"}],"container-title":["BMJ Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/bmjopen-2020-047554","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,10,28]],"date-time":"2024-10-28T17:14:10Z","timestamp":1730135650000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmjopen.bmj.com\/lookup\/doi\/10.1136\/bmjopen-2020-047554"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,5]]},"references-count":60,"journal-issue":{"issue":"5","published-online":{"date-parts":[[2021,5,26]]},"published-print":{"date-parts":[[2021,5]]}},"alternative-id":["10.1136\/bmjopen-2020-047554"],"URL":"https:\/\/doi.org\/10.1136\/bmjopen-2020-047554","relation":{},"ISSN":["2044-6055","2044-6055"],"issn-type":[{"value":"2044-6055","type":"print"},{"value":"2044-6055","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,5]]}}}