Evidence map›Paper›PMID 38634232›Full record

ArticlePalliative medicine2024

A palliative care goals model for people with dementia and their family: Consensus achieved in an international Delphi study.

Mayumi Nishimura, Karen Harrison Dening, Elizabeth L Sampson, Edison Iglesias de Oliveira Vidal, Miharu Nakanishi, Nathan Davies, Wilson Abreu, Sharon Kaasalainen, Yvonne Eisenmann, Laura Dempsey and 7 more

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

Article in Palliative medicine, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing 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

5 citing papers in PubMed.

  1. Family Caregivers' Perspectives on Challenges and Support Needs in Hospital-Based Palliative Care for Persons Living With Dementia.Journal of applied gerontology : the official journal of the Southern Gerontological Society · 2026
    Article
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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

17 authors.

Mayumi NishimuraDepartment of Health Informatics, School of Public Health, Graduate School of Medicine, Kyoto University, Kyoto, Kyoto Prefecture, Japan.ORCID 0000-0001-8025-5211
Karen Harrison DeningDementia UK, London, UK.
Elizabeth L SampsonRoyal London Hospital and Centre for Psychiatry and Mental health, East London NHS Foundation Trust, London, UK.
Edison Iglesias de Oliveira VidalBotucatu Medical School, Sao Paulo State University (UNESP), Botucatu, State of São Paulo, Brazil.ORCID 0000-0002-1573-4678
Miharu NakanishiDepartment of Psychiatric Nursing, Tohoku University Graduate School of Medicine, Sendai, Miyagi, Japan.
Nathan DaviesResearch Department of Primary Care and Population Health, University College London, London, UK.ORCID 0000-0001-7757-5353
Wilson AbreuCenter for Health Technology and Ser- vices Research, University of Porto (ESEP/CINTESIS), Porto, Portugal.
Sharon KaasalainenSchool of Nursing, McMaster University, Hamilton, ON, Canada.
Yvonne EisenmannDepartment of Palliative Medicine, University Hospital of Cologne, Cologne, North Rhine-Westphalia, Germany.
Laura DempseyDepartment of Nursing and Healthcare, Technological University of the Shannon: Midlands Midwest, Athlone, Ireland.
Kirsten J MooreNational Ageing Research Institute, Parkville, VIC, Australia.
Sascha R BoltTilburg School of Social and Behavioral Sciences, Tilburg University, Tilburg, North Brabant, The Netherlands.
Judith Mm MeijersDepartment of Health Services Research, CAPHRI School for Public Health and Primary Care, Maastricht University, Maastricht, Limburg, The Netherlands.
Natashe Lemos DekkerInstitute of Cultural Anthropology and Development Sociology, Leiden University, Leiden, South Holland, The Netherlands.
Mitsunori MiyashitaDepartment of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Miyagi, Japan.ORCID 0000-0002-7637-0409
Takeo NakayamaDepartment of Health Informatics, School of Public Health, Graduate School of Medicine, Kyoto University, Kyoto, Kyoto Prefecture, Japan.
Jenny T van der SteenDepartment of Public Health and Primary Care, Leiden University Medical Center, Leiden, South Holland, The Netherlands.ORCID 0000-0002-9063-7501

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundAdvance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life.

aimTo develop a multidimensional international palliative care goals model in dementia for use in practice.

designInternational Delphi study integrating consensus and evidence from a meta-qualitative study. The Delphi panel rated statements about the model on a 5-point agreement scale. The criteria for consensus were pre-specified. SETTING/

participantsSeventeen researchers from eight countries developed an initial model, and 169 candidate panellists were invited to the international online Delphi study.

resultsPanellists (107; response 63.3%) resided in 33 countries. The model comprised four main care goals: (1) Comfort ensured; (2) Control over function maintained; (3) Identity protected and personhood respected and (4) Coping with grief and loss-person and caregiver supported. The model reflects how needs and care goals change over time with the progression of dementia, concluding with bereavement support. The first version of the model achieved a consensus after which it was slightly refined based on feedback. We did not achieve a consensus on adding a goal of life prolongation, and on use of the model by people with dementia and family themselves.

conclusionA new palliative care goals model for people with dementia and their families includes relationship aspects for use by professionals and achieved a consensus among a panel with diverse cultural background. The position of life prolongation in relation to palliative care goals needs further research.

Indexed as

Advance Care PlanningDementiaDelphi TechniqueGoalsHumansPalliative Careadvance care planningbiopsychosocialcognitive disordersDelphi techniqueDementiainterprofessional educationmodelpalliative care

Identifiers

PMID38634232
PMCPMC11025301

What OpenQuestion holds

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Registered trials

None linked

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.