Attempts to Control the End of Life in People with Dementia: Two-level Approach to Examine Controversies

Información del proyecto

CONT-END

Identificador del acuerdo de subvención: 771483

DOI

10.3030/771483

Proyecto cerrado

Fecha de la firma de la CE 16 Julio 2018

Fecha de inicio 1 Diciembre 2018

Fecha de finalización 31 Mayo 2025

Financiado con arreglo a

• EXCELLENT SCIENCE - European Research Council (ERC)

Coste total

€ 1 988 972,00

Aportación de la UE

€ 1 988 972,00

Coordinado por

ACADEMISCH ZIEKENHUIS LEIDEN
Netherlands

CORDIS proporciona enlaces a los documentos públicos y las publicaciones de los proyectos de los programas marco HORIZONTE.

Los enlaces a los documentos y las publicaciones de los proyectos del Séptimo Programa Marco, así como los enlaces a algunos tipos de resultados específicos, como conjuntos de datos y «software», se obtienen dinámicamente de OpenAIRE .

Publicaciones

Peer reviewed articles (19)

Decisions, Decisions, Decisions: An Ethnographic Study of Researcher Discretion in Practice

Autores: Tom van Drimmelen, M. Nienke Slagboom, Ria Reis, Lex M. Bouter, Jenny T. van der Steen
Publicado en: Science and Engineering Ethics, Edición 30, 2024, Página(s) 59, ISSN 1471-5546
Editor: Springer Science and Business Media LLC
DOI: 10.1007/s11948-024-00481-5

Acceptability of bispectral Index monitoring in end-of-life care for dementia

Autores: Jingyuan Xu (须静媛), Hanneke JA Smaling, Albert Dahan, Justin Chan, Jenny T van der Steen
Publicado en: Journal of Alzheimer’s Disease, Edición 102, 2025, Página(s) 1183-1196, ISSN 1387-2877
Editor: IOS Press
DOI: 10.1177/13872877241297147

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

Autores: van der Steen JT, Nakanishi M, Van den Block L, Di Giulio P, Gonella S, In der Schmitten J, Sudore RL, Harrison Dening K, Parker D, Mimica N, Holmerova I, Larkin P, Martins Pereira S, Rietjens JAC, Korfage IJ; European Association for Palliative Care (EAPC). .
Publicado en: Alzheimers Dement, Edición 20(2), 2024, Página(s) 1309-1320, ISSN 1552-5260
Editor: Elsevier BV
DOI: 10.1002/alz.13526

How international experts would define advance care planning: a content analysis

Autores: Jenny T. van der Steen, Emma J. de Wit, Mandy Visser, Miharu Nakanishi, Lieve Van den Block, Ida J. Korfage, Jürgen in der Schmitten, Rebecca L. Sudore
Publicado en: Annals of Palliative Medicine, Edición 13, 2024, Página(s) 1409-1419, ISSN 2224-5820
Editor: AME Publishing Company
DOI: 10.21037/apm-24-57

"Commentary to: ""Timely dying in dementia: Use patients' judgments and broaden the concept of suffering."" Timely dying, suffering in dementia, and a role for family and professional caregivers in preventing it."

Autores: van der Steen JT, Scheeres-Feitsma TM, Schaafsma P.
Publicado en: Alzheimer's & dementia : diagnosis, assessment & disease monitoring, Edición 16(1), 2024, Página(s) e12536, ISSN 2352-8729
Editor: Elsevier
DOI: 10.1002/dad2.12536

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

Autores: 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, Kirsten J Moore, Sascha R Bolt, Judith MM Meijers, Natashe Lemos Dekker, Mitsunori Miyashita, Takeo Nakayama, Jenny T van der Steen
Publicado en: Palliative Medicine, Edición 38, 2025, Página(s) 457-470, ISSN 0269-2163
Editor: SAGE Publications
DOI: 10.1177/02692163241234579

Interventions that may increase control at the end of life in persons with dementia: the cross-cultural CONT-END acceptability study protocol and pilot-testing

Autores: Hanneke J.A. Smaling; Xu Jingyuan; Miharu Nakanishi; Shiri Shinan-Altman; David R. Mehr; Lukas Radbruch; Jan Gaertner; Perla Werner; Wilco P. Achterberg; Jenny T. van der Steen
Publicado en: BMC Palliative Care, Edición 22(1), 2023, Página(s) 142, ISSN 1472-684X
Editor: BioMed Central
DOI: 10.1186/s12904-023-01249-7

Commentary: Can an effective end‐of‐life intervention for advanced dementia be viewed as moral?

Autores: Trijntje M. Scheeres‐Feitsma, Petruschka Schaafsma, Jenny T. van der Steen, Johannes J. M. van Delden
Publicado en: Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring, Edición 16, 2024, Página(s) e12531, ISSN 2352-8729
Editor: Wiley
DOI: 10.1002/dad2.12531

The value of virtual simulation in training GP residents in advance care planning conversations

Autores: Willemijn Tros, Jenny T. van der Steen, Mattijs E. Numans, Petra G. van Peet, Nienke J.A. Boogaard
Publicado en: Education for Primary Care, Edición 36, 2025, Página(s) 31-39, ISSN 1473-9879
Editor: Radcliffe Medical Press Ltd.
DOI: 10.1080/14739879.2024.2417941

Family involvement in euthanasia or Physician Assisted Suicide and dementia: A systematic review.

Autores: Scheeres-Feitsma TM, van Laarhoven AJJMK, de Vries R, Schaafsma P, van der Steen JT.
Publicado en: Alzheimers Dement, Edición April 25, ahead of print, 2023, Página(s) 0-0, ISSN 1552-5260
Editor: Elsevier BV
DOI: 10.1002/alz.13094

Advance care planning in the Netherlands

Autores: van der Steen JT, Engels Y, Touwen DP, Kars MC, Reyners AKL, van der Linden YM, Korfage IJ.
Publicado en: Z Evid Fortbild Qual Gesundhwes, Edición S1865-9217(23), 2023, Página(s) 00136-8., ISSN 2212-0289
Editor: Elsevier
DOI: 10.1016/j.zefq.2023.06.003

Causes of reporting bias: a theoretical framework [version 2; peer review: 2 approved]

Autores: Jenny T van der Steen; Gerben ter Riet; Cornelis A van den Bogert; Lex M Bouter
Publicado en: F1000Research, Edición 8, 2019, Página(s) 280, ISSN 2046-1402
Editor: F1000 Research Ltd.
DOI: 10.12688/f1000research.18310.2

A family affair: Repeated interviews with people with dementia and a euthanasia wish and their families

Autores: Trijntje M. Scheeres-Feitsma, Petruschka Schaafsma, Jenny T. van der Steen
Publicado en: Death Studies, 2024, Página(s) 1-11, ISSN 0748-1187
Editor: Brunner - Routledge (US)
DOI: 10.1080/07481187.2024.2376819

Palliative Care in Advanced Dementia: Comparison of Strategies in Three Countries

Autores: Shelley A. Sternberg, Shiri Shinan-Altman, Ladislav Volicer, David J. Casarett, Jenny T. van der Steen
Publicado en: Geriatrics, Edición 6/2, 2021, Página(s) 44, ISSN 2308-3417
Editor: MDPI
DOI: 10.3390/geriatrics6020044

Talking about Meaning and Loss with Relatives of Persons with Dementia: An Ethnographic Study in a Nursing Home

Autores: Caroline Couprie; Jenny T. van der Steen
Publicado en: Geriatrics (Basel), Edición 8(1), 2023, Página(s) 23, ISSN 2308-3417
Editor: MDPI
DOI: 10.3390/geriatrics8010023

Optimizing Advance Care Planning in Dementia: Recommendations From a 33-Country Delphi Study

Autores: Jenny T. van der Steen, Lieve Van den Block, Miharu Nakanishi, Karen Harrison Dening, Deborah Parker, Philip Larkin, Paola Di Giulio, Jürgen in der Schmitten, Rebecca L. Sudore, Ninoslav Mimica, Iva Holmerova, Sandra Martins Pereira, Ida J. Korfage
Publicado en: Journal of Pain and Symptom Management, Edición 69, 2025, Página(s) e755-e772, ISSN 0885-3924
Editor: Elsevier BV
DOI: 10.1016/j.jpainsymman.2025.02.471

Analysis of linked electronic health records and administrative data

Autores: Bahar Azizi; Bram Tilburgs; Hein P. J. van Hout; Iris van der Heide; Robert A. Verheij; Robert A. Verheij; Wilco P. Achterberg; Jenny T. van der Steen; Jenny T. van der Steen; Karlijn J. Joling
Publicado en: Frontiers in Public Health, Edición 10, 2022, Página(s) 653174, ISSN 2296-2565
Editor: Frontiers
DOI: 10.3389/fpubh.2022.653174

Noninvasive monitoring technologies to identify discomfort and distressing symptoms in persons with limited communication at the end of life: a scoping review.

Autores: Xu J, Smaling HJA, Schoones JW, Achterberg WP, van der Steen JT.
Publicado en: BMC Palliat Care, Edición 23(1), 2024, Página(s) 78, ISSN 1472-684X
Editor: BioMed Central
DOI: 10.1186/s12904-024-01371-0

Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care

Autores: Miharu Nakanishi, Sandra Martins Pereira, Lieve Van den Block, Deborah Parker, Karen Harrison-Dening, Paola Di Giulio, Jürgen In der Schmitten, Philip J Larkin, Ninoslav Mimica, Rebecca L Sudore, Iva Holmerová, Ida J Korfage, Jenny T van der Steen
Publicado en: The Lancet Healthy Longevity, Edición 5, 2024, Página(s) e370-e378, ISSN 2666-7568
Editor: Elsevier BV
DOI: 10.1016/s2666-7568(24)00043-6

Non-peer reviewed articles (3)

Advance care planning in dementia

Autores: David J Oliver, Simone Veronese, Ida J Korfage, Jenny T van der Steen
Publicado en: The Lancet Neurology, Edición 24, 2025, Página(s) 563, ISSN 1474-4422
Editor: The Lancet Publishing Group
DOI: 10.1016/s1474-4422(25)00196-6

Increasing transparency of decision making in research practice: adding value or just more red tape?

Autores: Jenny T. van der Steen, Lex M. Bouter
Publicado en: European Journal of Epidemiology, Edición 40, 2025, Página(s) 137-139, ISSN 0393-2990
Editor: Kluwer Academic Publishers
DOI: 10.1007/s10654-025-01205-0

Nieuw onderzoek advance care planning dementie

Autores: Bahar Azizi
Publicado en: Huisarts en wetenschap, Edición 63/1, 2020, Página(s) 59-59, ISSN 0018-7070
Editor: Bohn Stafleu van Loghum B.V
DOI: 10.1007/s12445-019-0393-3

Conference proceedings (9)

Non-invasive monitoring technologies to identify discomfort and distressing symptoms in persons with limited communication at the end of life: A scoping review.Part of our symposium: monitoring technologies in the last phase of life for people with communication difficulties.

Autores: Jingyuan X (须静媛), Smaling HJA, Schoones JW, van der Steen JT, Achterberg WP.
Publicado en: Palliative Medicine, Edición 37, 2023, Página(s) 1S
Editor: Sage

Two Approaches to Advance Care Planning for People with Dementia: Acceptability among US and Dutch Healthcare Providers

Autores: Xu Jingyuan, Hanneke J.A. Smaling, David R. Mehr, Kevin Craig, Wilco P. Achterberg, Jenny T. van der Steen
Publicado en: Alzheimer's & Dementia, Edición 19, 2024, ISSN 1552-5260
Editor: Elsevier BV
DOI: 10.1002/alz.072584

Cross‐cultural acceptability of interventions at the end of life in dementia: Video vignette study design and pilot evaluation (ERC CONT‐END WP1)

Autores: Jenny T van der Steen, Bahar Azizi, Miharu Nakanishi, Shiri Shinan‐Altman, David R Mehr, Lukas Radbruch, Jan Gaertner, Perla Werner, Wilco P Achterberg, Bram Tilburgs, Hanneke JA Smaling
Publicado en: Alzheimer's & Dementia, Edición 16/S7, 2020, Página(s) e041542, ISSN 1552-5260
Editor: Elsevier BV
DOI: 10.1002/alz.041542

A definitional framework of advance care planning in dementia achieved a consensus in a 33-country Delphi study

Autores: van der Steen J, Nakanishi M, Van den Block L, Korfage IJ
Publicado en: BMJ Supportive & Palliative Care, Edición 13(Suppl 4), 2023, Página(s) A11
Editor: BMJ Publishing Group

Advance care planning with dementia, cancer and other chronic-progressive diseases in general practice: Longitudinal analyses

Autores: Hommel D, Azizi B, Visser M, Bolt S, Blom JW, Janssen DJA, van Hout HPJ, Francke AL, Verheij R, Joling K, van der Steen JT
Publicado en: Palliative Medicine, Edición 38(1S), 2024, Página(s) 69
Editor: Sage

Advance Care Planning: comparison of views of people living with dementia and their caregivers

Autores: Katherine McGough, Taylor Bosworth, Jingyuan Xu, Hanneke Smaling, Jenny van der Steen, David Mehr
Publicado en: Palliative and end-of-life care, 2024, Página(s) 7093
Editor: American Academy of Family Physicians
DOI: 10.1370/afm.22.s1.7093

ENGAGING PEOPLE WITH DEMENTIA AND THEIR FAMILY IN ADVANCE CARE PLANNING: A 33 COUNTRY DELPHI STUDY

Autores: Jenny van der Steen, Ida Korfage
Publicado en: Innovation in Aging, Edición 7, 2023, Página(s) 541-542, ISSN 2399-5300
Editor: Oxford University Press (OUP)
DOI: 10.1093/geroni/igad104.1778

Acceptability of euthanasia for people with dementia: physician perspectives from six countries

Autores: Jingyuan X (须静媛), Smaling H, Nakanishi M, Shinan-Altman S, Radbruch L, Gaertner J, Achterberg W, Mehr D, van der Steen J
Publicado en: Palliative Medicine, Edición 39(2S), 2025, Página(s) 306
Editor: Sage

Reflecting on the impact of a research integrity work package in a dementia research program: qualitative analysis. [in duplicate: independently analysed and presented by two researchers]

Autores: van der Steen J, Evans N
Publicado en: 8th World Conference on Research Integrity 2-5 June 2024, Edición PP012, 2024
Editor: WCRI

Other (2)

Researcher Discretion: Navigating ambiguity and uncertainty in research practice

Autores: Tom van Drimmelen, Nienke Slagboom, Lex Bouter, Ria Reis, Jenny Theodora van der Steen
Publicado en: preprint, Edición n/a, 2024
Editor: Center for Open Science
DOI: 10.31222/osf.io/2vah6

Contrasting Approaches in Advance Care Planning in Dementia as Perceived by General Practitioners

Autores: Jenny T van der Steen, Xu Jingyuan, Willemijn Tros, Jeanet W Blom
Publicado en: medRxiv, Edición preprint, 2025
Editor: Cold Spring Harbor Laboratory
DOI: 10.1101/2025.06.06.25329142