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Quality of end-of-life care among individuals with and without dementia: a Swedish registry-based study
Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Region Östergötland, Primary Care Center, Primary Health Care Center Ekholmen.
Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences.ORCID iD: 0000-0002-4988-6346
Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Region Östergötland, Local Health Care Services in Central Östergötland, Närvårdskliniken. Linköping University, Faculty of Medicine and Health Sciences.ORCID iD: 0000-0003-0704-202X
Unit of Professional Development, Department of Clinical Sciences, Umeå University, Sweden.
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2026 (English)In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 25, no 1, article id 89Article in journal (Refereed) Published
Abstract [en]

Background Despite dementia being a leading cause of death and clinical guidelines recommending palliative care, substantial gaps in care quality for this population have previously been shown. This study aimed to investigate and compare the quality of end-of-life (EOL) care provided to individuals with and without dementia in different settings. Methods In this registry-based study, patients registered in the Swedish Register of Palliative Care (SRPC) between 2011 and 2020 were cross-referenced with patients in the Swedish registry for cognitive/dementia disorders (SveDem). For each patient with dementia registered in SveDem (n = 39 712), two controls without dementia matched by year of birth and gender were selected from the SRPC (n = 79 336). Quality indicators in the SRPC were analyzed by group (dementia/controls) and by place of death, separately, using the chi-squared test. Multiple logistic regression analyses were conducted to examine the association between the quality indicators and having a diagnosis of dementia or not, overall and in different settings. Results Individuals with dementia were more likely to have staff or family members present at death, to receive documented decisions to shift to EOL care, have symptom assessments made the final week of life and prescription of injectables. However, they were less likely to express preferences for place of death and to be informed about EOL care transitions, especially in hospitals without specialized palliative care. Conclusions In this study, individuals with dementia received higher quality EOL care in several domains compared with those without dementia. However, they were less likely to have expressed preferences for place of death. These findings highlight the need for early, proactive care planning to align care with patient preferences and avoid potentially non-beneficial actions.

Place, publisher, year, edition, pages
Springer Nature , 2026. Vol. 25, no 1, article id 89
Keywords [en]
Advance care planning, Dementia, End-of-life care, Palliative care, Place of death, Quality of end-of-life, Quality registry
National Category
Nursing
Identifiers
URN: urn:nbn:se:liu:diva-221884DOI: 10.1186/s12904-026-02037-9ISI: 001737325300001PubMedID: 41794789Scopus ID: 2-s2.0-105035522928OAI: oai:DiVA.org:liu-221884DiVA, id: diva2:2045950
Note

Funding: Linköping University

Available from: 2026-03-13 Created: 2026-03-13 Last updated: 2026-04-24

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Kastbom, LisaLyth, JohanSimmons, JohannaNägga, KatarinaSegernäs Kvitting, Anna

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Kastbom, LisaLyth, JohanSimmons, JohannaNägga, KatarinaSegernäs Kvitting, Anna
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Faculty of Medicine and Health SciencesDivision of Prevention, Rehabilitation and Community MedicinePrimary Health Care Center EkholmenDivision of Society and HealthNärvårdskliniken
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