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

Project Information

CONT-END

Grant agreement ID: 771483

DOI

10.3030/771483

Project closed

EC signature date 16 July 2018

Start date 1 December 2018

End date 31 May 2025

Funded under

• EXCELLENT SCIENCE - European Research Council (ERC)

Total cost

€ 1 988 972,00

EU contribution

€ 1 988 972,00

Coordinated by

ACADEMISCH ZIEKENHUIS LEIDEN
Netherlands

CORDIS provides links to public deliverables and publications of HORIZON projects.

Links to deliverables and publications from FP7 projects, as well as links to some specific result types such as dataset and software, are dynamically retrieved from OpenAIRE .

Publications

Peer reviewed articles (19)

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

Author(s): Tom van Drimmelen, M. Nienke Slagboom, Ria Reis, Lex M. Bouter, Jenny T. van der Steen
Published in: Science and Engineering Ethics, Issue 30, 2024, Page(s) 59, ISSN 1471-5546
Publisher: 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

Author(s): Jingyuan Xu (须静媛), Hanneke JA Smaling, Albert Dahan, Justin Chan, Jenny T van der Steen
Published in: Journal of Alzheimer’s Disease, Issue 102, 2025, Page(s) 1183-1196, ISSN 1387-2877
Publisher: IOS Press
DOI: 10.1177/13872877241297147

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

Author(s): 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). .
Published in: Alzheimers Dement, Issue 20(2), 2024, Page(s) 1309-1320, ISSN 1552-5260
Publisher: Elsevier BV
DOI: 10.1002/alz.13526

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

Author(s): 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
Published in: Annals of Palliative Medicine, Issue 13, 2024, Page(s) 1409-1419, ISSN 2224-5820
Publisher: 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."

Author(s): van der Steen JT, Scheeres-Feitsma TM, Schaafsma P.
Published in: Alzheimer's & dementia : diagnosis, assessment & disease monitoring, Issue 16(1), 2024, Page(s) e12536, ISSN 2352-8729
Publisher: 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

Author(s): 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
Published in: Palliative Medicine, Issue 38, 2025, Page(s) 457-470, ISSN 0269-2163
Publisher: 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

Author(s): 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
Published in: BMC Palliative Care, Issue 22(1), 2023, Page(s) 142, ISSN 1472-684X
Publisher: BioMed Central
DOI: 10.1186/s12904-023-01249-7

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

Author(s): Trijntje M. Scheeres‐Feitsma, Petruschka Schaafsma, Jenny T. van der Steen, Johannes J. M. van Delden
Published in: Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring, Issue 16, 2024, Page(s) e12531, ISSN 2352-8729
Publisher: Wiley
DOI: 10.1002/dad2.12531

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

Author(s): Willemijn Tros, Jenny T. van der Steen, Mattijs E. Numans, Petra G. van Peet, Nienke J.A. Boogaard
Published in: Education for Primary Care, Issue 36, 2025, Page(s) 31-39, ISSN 1473-9879
Publisher: Radcliffe Medical Press Ltd.
DOI: 10.1080/14739879.2024.2417941

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

Author(s): Scheeres-Feitsma TM, van Laarhoven AJJMK, de Vries R, Schaafsma P, van der Steen JT.
Published in: Alzheimers Dement, Issue April 25, ahead of print, 2023, Page(s) 0-0, ISSN 1552-5260
Publisher: Elsevier BV
DOI: 10.1002/alz.13094

Advance care planning in the Netherlands

Author(s): van der Steen JT, Engels Y, Touwen DP, Kars MC, Reyners AKL, van der Linden YM, Korfage IJ.
Published in: Z Evid Fortbild Qual Gesundhwes, Issue S1865-9217(23), 2023, Page(s) 00136-8., ISSN 2212-0289
Publisher: Elsevier
DOI: 10.1016/j.zefq.2023.06.003

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

Author(s): Jenny T van der Steen; Gerben ter Riet; Cornelis A van den Bogert; Lex M Bouter
Published in: F1000Research, Issue 8, 2019, Page(s) 280, ISSN 2046-1402
Publisher: 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

Author(s): Trijntje M. Scheeres-Feitsma, Petruschka Schaafsma, Jenny T. van der Steen
Published in: Death Studies, 2024, Page(s) 1-11, ISSN 0748-1187
Publisher: Brunner - Routledge (US)
DOI: 10.1080/07481187.2024.2376819

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

Author(s): Shelley A. Sternberg, Shiri Shinan-Altman, Ladislav Volicer, David J. Casarett, Jenny T. van der Steen
Published in: Geriatrics, Issue 6/2, 2021, Page(s) 44, ISSN 2308-3417
Publisher: MDPI
DOI: 10.3390/geriatrics6020044

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

Author(s): Caroline Couprie; Jenny T. van der Steen
Published in: Geriatrics (Basel), Issue 8(1), 2023, Page(s) 23, ISSN 2308-3417
Publisher: MDPI
DOI: 10.3390/geriatrics8010023

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

Author(s): 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
Published in: Journal of Pain and Symptom Management, Issue 69, 2025, Page(s) e755-e772, ISSN 0885-3924
Publisher: Elsevier BV
DOI: 10.1016/j.jpainsymman.2025.02.471

Analysis of linked electronic health records and administrative data

Author(s): 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
Published in: Frontiers in Public Health, Issue 10, 2022, Page(s) 653174, ISSN 2296-2565
Publisher: 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.

Author(s): Xu J, Smaling HJA, Schoones JW, Achterberg WP, van der Steen JT.
Published in: BMC Palliat Care, Issue 23(1), 2024, Page(s) 78, ISSN 1472-684X
Publisher: 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

Author(s): 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
Published in: The Lancet Healthy Longevity, Issue 5, 2024, Page(s) e370-e378, ISSN 2666-7568
Publisher: Elsevier BV
DOI: 10.1016/s2666-7568(24)00043-6

Non-peer reviewed articles (3)

Advance care planning in dementia

Author(s): David J Oliver, Simone Veronese, Ida J Korfage, Jenny T van der Steen
Published in: The Lancet Neurology, Issue 24, 2025, Page(s) 563, ISSN 1474-4422
Publisher: 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?

Author(s): Jenny T. van der Steen, Lex M. Bouter
Published in: European Journal of Epidemiology, Issue 40, 2025, Page(s) 137-139, ISSN 0393-2990
Publisher: Kluwer Academic Publishers
DOI: 10.1007/s10654-025-01205-0

Nieuw onderzoek advance care planning dementie

Author(s): Bahar Azizi
Published in: Huisarts en wetenschap, Issue 63/1, 2020, Page(s) 59-59, ISSN 0018-7070
Publisher: 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.

Author(s): Jingyuan X (须静媛), Smaling HJA, Schoones JW, van der Steen JT, Achterberg WP.
Published in: Palliative Medicine, Issue 37, 2023, Page(s) 1S
Publisher: Sage

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

Author(s): Xu Jingyuan, Hanneke J.A. Smaling, David R. Mehr, Kevin Craig, Wilco P. Achterberg, Jenny T. van der Steen
Published in: Alzheimer's & Dementia, Issue 19, 2024, ISSN 1552-5260
Publisher: 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)

Author(s): 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
Published in: Alzheimer's & Dementia, Issue 16/S7, 2020, Page(s) e041542, ISSN 1552-5260
Publisher: 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

Author(s): van der Steen J, Nakanishi M, Van den Block L, Korfage IJ
Published in: BMJ Supportive & Palliative Care, Issue 13(Suppl 4), 2023, Page(s) A11
Publisher: BMJ Publishing Group

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

Author(s): 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
Published in: Palliative Medicine, Issue 38(1S), 2024, Page(s) 69
Publisher: Sage

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

Author(s): Katherine McGough, Taylor Bosworth, Jingyuan Xu, Hanneke Smaling, Jenny van der Steen, David Mehr
Published in: Palliative and end-of-life care, 2024, Page(s) 7093
Publisher: 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

Author(s): Jenny van der Steen, Ida Korfage
Published in: Innovation in Aging, Issue 7, 2023, Page(s) 541-542, ISSN 2399-5300
Publisher: Oxford University Press (OUP)
DOI: 10.1093/geroni/igad104.1778

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

Author(s): Jingyuan X (须静媛), Smaling H, Nakanishi M, Shinan-Altman S, Radbruch L, Gaertner J, Achterberg W, Mehr D, van der Steen J
Published in: Palliative Medicine, Issue 39(2S), 2025, Page(s) 306
Publisher: 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]

Author(s): van der Steen J, Evans N
Published in: 8th World Conference on Research Integrity 2-5 June 2024, Issue PP012, 2024
Publisher: WCRI

Other (2)

Researcher Discretion: Navigating ambiguity and uncertainty in research practice

Author(s): Tom van Drimmelen, Nienke Slagboom, Lex Bouter, Ria Reis, Jenny Theodora van der Steen
Published in: preprint, Issue n/a, 2024
Publisher: Center for Open Science
DOI: 10.31222/osf.io/2vah6

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

Author(s): Jenny T van der Steen, Xu Jingyuan, Willemijn Tros, Jeanet W Blom
Published in: medRxiv, Issue preprint, 2025
Publisher: Cold Spring Harbor Laboratory
DOI: 10.1101/2025.06.06.25329142