{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,9]],"date-time":"2026-05-09T07:13:04Z","timestamp":1778310784625,"version":"3.51.4"},"reference-count":34,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T00:00:00Z","timestamp":1777593600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T00:00:00Z","timestamp":1777593600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/501100000269","name":"economic and social research council","doi-asserted-by":"publisher","award":["ES\/S010327\/1"],"award-info":[{"award-number":["ES\/S010327\/1"]}],"id":[{"id":"10.13039\/501100000269","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000272","name":"national institute for health and care research","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliat\ufffdCare"],"published-print":{"date-parts":[[2026,5]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>People living with dementia (PLWD) often have high symptom burden, exacerbated by comorbidities and experience unplanned hospital admissions that increase towards the end of life. Unmanaged symptoms and unplanned hospital admissions are distressing for the person living with dementia and family carers and expensive for the healthcare system.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>To explore the relationship between unmanaged symptoms of PLWD following an unplanned hospital admission and carer health and wellbeing outcomes over time.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design:<\/jats:title>\n                    <jats:p>Prospective longitudinal cohort study.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>Physical, psychosocial and spiritual symptoms of the PLWD and carer burden, distress and pre-death grief were assessed over 12\u2009months following an unplanned hospital admission. Descriptive statistics and multilevel linear regression analyses were used to examine the relationships between PLWD unmanaged symptoms and carer outcomes.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>\n                      A total of 51 carers of PLWD with a mean age of 59.6 participated. Carer burden was significantly associated with increasing PLWD unmanaged symptoms (coefficient\u2009=\u20090.07, 95% CI [0.03, 0.12],\n                      <jats:italic toggle=\"yes\">p<\/jats:italic>\n                      \u2009=\u20090.002) and agitation (coefficient\u2009=\u20090.08, 95%CI [0.02, 0.14],\n                      <jats:italic toggle=\"yes\">p<\/jats:italic>\n                      \u2009=\u20090.009). Carer psychological distress showed a positive trend in its association with increasing PLWD unmanaged symptoms (coefficient\u2009=\u20090.07, 95% CI [\u22120.00, 0.13],\n                      <jats:italic toggle=\"yes\">p<\/jats:italic>\n                      \u2009=\u20090.059) and agitation (coefficient\u2009=\u20090.06, 95% CI [\u22120.01, 0.14],\n                      <jats:italic toggle=\"yes\">p<\/jats:italic>\n                      \u2009=\u20090.090), but both analyses did not reach statistical significance. Carer pre-death grief was not associated with PLWD symptoms or agitation.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>Identifying and addressing symptoms in PLWD following an unplanned hospital admission is essential in enhancing the wellbeing of PLWD and carers. Hospital discharge planning should incorporate carer perspectives, provide support for carer burden and distress, and ensure continuity of care to reduce symptoms and improve outcomes for both PLWD and their carers.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/26323524261440961","type":"journal-article","created":{"date-parts":[[2026,5,7]],"date-time":"2026-05-07T08:28:24Z","timestamp":1778142504000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Increasing number of unmanaged distressing symptoms in people living with dementia associated with family carer burden and distress following an unplanned hospital admission: A longitudinal cohort study"],"prefix":"10.1177","volume":"20","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5714-0563","authenticated-orcid":false,"given":"Sophie","family":"Crawley","sequence":"first","affiliation":[{"name":"Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Victoria","family":"Vickerstaff","sequence":"additional","affiliation":[{"name":"Centre for Evaluation and Methods, Wolfson Institute of Population Health, Queen Mary University of London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3453-3203","authenticated-orcid":false,"given":"Clare","family":"Ellis-Smith","sequence":"additional","affiliation":[{"name":"Cicely Saunders Institute of Palliative Care, Policy &amp; Rehabilitation, Florence Nightingale Faculty of Nursing, King\u2019s College London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7012-7347","authenticated-orcid":false,"given":"Charlotte","family":"Kenten","sequence":"additional","affiliation":[{"name":"Centre for Psychiatry and Mental Health, Wolfson Institute of Population Health, Queen Mary University of London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2057-1428","authenticated-orcid":false,"given":"Emel","family":"Yorganci","sequence":"additional","affiliation":[{"name":"Cicely Saunders Institute of Palliative Care, Policy &amp; Rehabilitation, Florence Nightingale Faculty of Nursing, King\u2019s College London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Catherine J.","family":"Evans","sequence":"additional","affiliation":[{"name":"Cicely Saunders Institute of Palliative Care, Policy &amp; Rehabilitation, Florence Nightingale Faculty of Nursing, King\u2019s College London, UK"},{"name":"Sussex Community NHS Foundation Trust, Brighton General Hospital, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Elizabeth L.","family":"Sampson","sequence":"additional","affiliation":[{"name":"Centre for Psychiatry and Mental Health, Wolfson Institute of Population Health, Queen Mary University of London, UK"},{"name":"Department of Psychological Medicine, Royal London Hospital, East London NHS Foundation Trust, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6511-412X","authenticated-orcid":false,"given":"Nuriye","family":"Kupeli","sequence":"additional","affiliation":[{"name":"Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, UK"},{"name":"Centre for Psychiatry and Mental Health, Wolfson Institute of Population Health, Queen Mary University of London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2026,5,7]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pmed.0030397"},{"key":"e_1_3_3_3_2","doi-asserted-by":"publisher","DOI":"10.1016\/S2214-109X(19)30172-X"},{"key":"e_1_3_3_4_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12875-023-02229-9"},{"key":"e_1_3_3_5_2","doi-asserted-by":"publisher","DOI":"10.1093\/ageing\/afac098"},{"key":"e_1_3_3_6_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jamda.2021.06.012"},{"key":"e_1_3_3_7_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12877-024-04905-6"},{"key":"e_1_3_3_8_2","doi-asserted-by":"publisher","DOI":"10.1177\/1471301214558308"},{"key":"e_1_3_3_9_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12877-023-03774-9"},{"key":"e_1_3_3_10_2","doi-asserted-by":"publisher","DOI":"10.1002\/gps.5482"},{"key":"e_1_3_3_11_2","doi-asserted-by":"publisher","DOI":"10.1108\/WWOP-06-2020-0024"},{"key":"e_1_3_3_12_2","doi-asserted-by":"publisher","DOI":"10.1017\/S1041610221002787"},{"key":"e_1_3_3_13_2","doi-asserted-by":"publisher","DOI":"10.1017\/S1041610216000922"},{"key":"e_1_3_3_14_2","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-8-132"},{"key":"e_1_3_3_15_2","doi-asserted-by":"publisher","DOI":"10.1017\/S1041610209990147"},{"key":"e_1_3_3_16_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(07)61602-X"},{"key":"e_1_3_3_17_2","doi-asserted-by":"publisher","DOI":"10.1002\/gps.5251"},{"key":"e_1_3_3_18_2","doi-asserted-by":"publisher","DOI":"10.1177\/0269216316675096"},{"key":"e_1_3_3_19_2","doi-asserted-by":"publisher","DOI":"10.1176\/jnp.12.2.233"},{"key":"e_1_3_3_20_2","doi-asserted-by":"publisher","DOI":"10.1093\/geront\/41.5.652"},{"key":"e_1_3_3_21_2","doi-asserted-by":"publisher","DOI":"10.1017\/S0033291702006074"},{"key":"e_1_3_3_22_2","doi-asserted-by":"publisher","DOI":"10.1017\/S1041610219000309"},{"key":"e_1_3_3_23_2","doi-asserted-by":"publisher","DOI":"10.1207\/s15327906mbr2603_7"},{"key":"e_1_3_3_24_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1745-7599.2008.00342.x"},{"key":"e_1_3_3_25_2","doi-asserted-by":"publisher","DOI":"10.3233\/JAD-215670"},{"key":"e_1_3_3_26_2","doi-asserted-by":"publisher","DOI":"10.1177\/14713012211066674"},{"key":"e_1_3_3_27_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(20)30367-6"},{"key":"e_1_3_3_28_2","article-title":"Virtual data collection strategies in research on Alzheimer\u2019s disease and related dementias (ADRD)","volume":"9","author":"Kim JE","year":"2025","unstructured":"Kim JE, Knox M, Grill JD, et al. 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