Evidence map›Paper›PMID 37985444›Full record

ArticleAlzheimer's & dementia : the journal of the Alzheimer's Association2024

Consensus definition of advance care planning in dementia: A 33-country Delphi study.

Jenny T van der Steen, Miharu Nakanishi, Lieve Van den Block, Paola Di Giulio, Silvia Gonella, Jürgen In der Schmitten, Rebecca L Sudore, Karen Harrison Dening, Deborah Parker, Ninoslav Mimica and 6 more

Abstract readConsensus Statement
PubMed Full text at PMC Publisher
In one paragraph

Article in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 43 papers.

0numbers the graph read from it
0cells of the map it votes in
43citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

43 citing papers in PubMed.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

16 authors.

Jenny T van der SteenDepartment of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands.ORCID 0000-0002-9063-7501
Miharu NakanishiDepartment of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands.ORCID 0000-0001-6200-9279
Lieve Van den BlockVUB-UGent End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB), Brussels, Belgium.ORCID 0000-0002-7770-348X
Paola Di GiulioDepartment of Public Health Sciences and Pediatrics, Turin University, Turin, Italy.ORCID 0000-0002-1500-8692
Silvia GonellaDirection of Health Professions, City of Health and Science University Hospital of Turin, Turin, Italy.ORCID 0000-0001-6294-9834
Jürgen In der SchmittenInstitute for General Practice/Family Medicine, Medical Faculty, University of Duisburg-Essen, Essen, Germany.ORCID 0000-0001-5960-1511
Rebecca L SudoreDivision of Geriatrics, Department of Medicine, University of California [more locations], San Francisco, California, USA.ORCID 0000-0003-4436-2209
Karen Harrison DeningResearch & Publications, Dementia UK, London, UK.ORCID 0000-0001-7635-644X
Deborah ParkerIMPACCT/School of Nursing and Midwifery, Faculty of Health, University of Technology, Sydney, Australia.ORCID 0000-0003-2552-8613
Ninoslav MimicaUniversity Psychiatric Hospital Vrapče, School of Medicine, University of Zagreb, Zagreb, Croatia.ORCID 0000-0003-4552-0547
Iva HolmerovaFaculty of Humanities, Centre of Expertise in Longevity and Long-Term Care and Centre of Gerontology, Charles University, Prague, Czech Republic.ORCID 0000-0003-2375-4174
Philip LarkinPalliative and Supportive Care Service and Institute of Higher Education and Research in Healthcare, UNIL, Université de Lausanne, CHUV, Centre hospitalier universitaire Vaudois, Faculté de biologie et de médecine - FBM Institut universitaire de formation et de recherche en soins - Hôpital Nestlé, Lausanne, Switzerland.ORCID 0000-0001-8424-3920
Sandra Martins PereiraCEGE: Research Center in Management and Economics - Ethics and Sustainability Research Area, Universidade Católica Portuguesa, Católica Porto Business School, Porto, Portugal.ORCID 0000-0003-4113-8957
Judith A C RietjensDepartment of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands.ORCID 0000-0002-0538-5603
Ida J KorfageDepartment of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands.ORCID 0000-0001-6538-9115
European Association for Palliative Care (EAPC)

Funding

Mentoring Researchers in Advance Care Planning for Underrepresented Older Adults at Risk for Alzheimer’s Disease and Related Dementias and Their CaregiversK24AG054415 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI REBECCA L SUDORE · 2017 to 2026
$1.7M
European Research CouncilNIA NIH HHS K24 AG054415
6 · The paper itself

Abstract

introductionExisting advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention.

methodsDelphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board.

resultsACP in dementia was defined as a communication process adapted to the person's capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. HIGHLIGHTS: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.

Indexed as

Advance Care PlanningDementiaTerminal CareDelphi TechniqueHumansadvance care planningconceptualizationdecision-makingdementiapalliative care

Identifiers

PMID37985444
PMCPMC10916978

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.