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

Informazioni relative al progetto

CONT-END

ID dell’accordo di sovvenzione: 771483

DOI

10.3030/771483

Progetto chiuso

Data della firma CE 16 Luglio 2018

Data di avvio 1 Dicembre 2018

Data di completamento 31 Maggio 2025

Finanziato da

• EXCELLENT SCIENCE - European Research Council (ERC)

Costo totale

€ 1 988 972,00

Contributo UE

€ 1 988 972,00

Coordinato da

ACADEMISCH ZIEKENHUIS LEIDEN
Netherlands

CORDIS fornisce collegamenti ai risultati finali pubblici e alle pubblicazioni dei progetti ORIZZONTE.

I link ai risultati e alle pubblicazioni dei progetti del 7° PQ, così come i link ad alcuni tipi di risultati specifici come dataset e software, sono recuperati dinamicamente da .OpenAIRE .

Pubblicazioni

Peer reviewed articles (19)

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

Autori: Tom van Drimmelen, M. Nienke Slagboom, Ria Reis, Lex M. Bouter, Jenny T. van der Steen
Pubblicato in: Science and Engineering Ethics, Numero 30, 2024, Pagina/e 59, ISSN 1471-5546
Editore: 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

Autori: Jingyuan Xu (须静媛), Hanneke JA Smaling, Albert Dahan, Justin Chan, Jenny T van der Steen
Pubblicato in: Journal of Alzheimer’s Disease, Numero 102, 2025, Pagina/e 1183-1196, ISSN 1387-2877
Editore: IOS Press
DOI: 10.1177/13872877241297147

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

Autori: 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). .
Pubblicato in: Alzheimers Dement, Numero 20(2), 2024, Pagina/e 1309-1320, ISSN 1552-5260
Editore: Elsevier BV
DOI: 10.1002/alz.13526

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

Autori: 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
Pubblicato in: Annals of Palliative Medicine, Numero 13, 2024, Pagina/e 1409-1419, ISSN 2224-5820
Editore: 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."

Autori: van der Steen JT, Scheeres-Feitsma TM, Schaafsma P.
Pubblicato in: Alzheimer's & dementia : diagnosis, assessment & disease monitoring, Numero 16(1), 2024, Pagina/e e12536, ISSN 2352-8729
Editore: 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

Autori: 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
Pubblicato in: Palliative Medicine, Numero 38, 2025, Pagina/e 457-470, ISSN 0269-2163
Editore: 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

Autori: 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
Pubblicato in: BMC Palliative Care, Numero 22(1), 2023, Pagina/e 142, ISSN 1472-684X
Editore: BioMed Central
DOI: 10.1186/s12904-023-01249-7

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

Autori: Trijntje M. Scheeres‐Feitsma, Petruschka Schaafsma, Jenny T. van der Steen, Johannes J. M. van Delden
Pubblicato in: Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring, Numero 16, 2024, Pagina/e e12531, ISSN 2352-8729
Editore: Wiley
DOI: 10.1002/dad2.12531

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

Autori: Willemijn Tros, Jenny T. van der Steen, Mattijs E. Numans, Petra G. van Peet, Nienke J.A. Boogaard
Pubblicato in: Education for Primary Care, Numero 36, 2025, Pagina/e 31-39, ISSN 1473-9879
Editore: Radcliffe Medical Press Ltd.
DOI: 10.1080/14739879.2024.2417941

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

Autori: Scheeres-Feitsma TM, van Laarhoven AJJMK, de Vries R, Schaafsma P, van der Steen JT.
Pubblicato in: Alzheimers Dement, Numero April 25, ahead of print, 2023, Pagina/e 0-0, ISSN 1552-5260
Editore: Elsevier BV
DOI: 10.1002/alz.13094

Advance care planning in the Netherlands

Autori: van der Steen JT, Engels Y, Touwen DP, Kars MC, Reyners AKL, van der Linden YM, Korfage IJ.
Pubblicato in: Z Evid Fortbild Qual Gesundhwes, Numero S1865-9217(23), 2023, Pagina/e 00136-8., ISSN 2212-0289
Editore: Elsevier
DOI: 10.1016/j.zefq.2023.06.003

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

Autori: Jenny T van der Steen; Gerben ter Riet; Cornelis A van den Bogert; Lex M Bouter
Pubblicato in: F1000Research, Numero 8, 2019, Pagina/e 280, ISSN 2046-1402
Editore: 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

Autori: Trijntje M. Scheeres-Feitsma, Petruschka Schaafsma, Jenny T. van der Steen
Pubblicato in: Death Studies, 2024, Pagina/e 1-11, ISSN 0748-1187
Editore: Brunner - Routledge (US)
DOI: 10.1080/07481187.2024.2376819

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

Autori: Shelley A. Sternberg, Shiri Shinan-Altman, Ladislav Volicer, David J. Casarett, Jenny T. van der Steen
Pubblicato in: Geriatrics, Numero 6/2, 2021, Pagina/e 44, ISSN 2308-3417
Editore: MDPI
DOI: 10.3390/geriatrics6020044

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

Autori: Caroline Couprie; Jenny T. van der Steen
Pubblicato in: Geriatrics (Basel), Numero 8(1), 2023, Pagina/e 23, ISSN 2308-3417
Editore: MDPI
DOI: 10.3390/geriatrics8010023

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

Autori: 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
Pubblicato in: Journal of Pain and Symptom Management, Numero 69, 2025, Pagina/e e755-e772, ISSN 0885-3924
Editore: Elsevier BV
DOI: 10.1016/j.jpainsymman.2025.02.471

Analysis of linked electronic health records and administrative data

Autori: 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
Pubblicato in: Frontiers in Public Health, Numero 10, 2022, Pagina/e 653174, ISSN 2296-2565
Editore: 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.

Autori: Xu J, Smaling HJA, Schoones JW, Achterberg WP, van der Steen JT.
Pubblicato in: BMC Palliat Care, Numero 23(1), 2024, Pagina/e 78, ISSN 1472-684X
Editore: 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

Autori: 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
Pubblicato in: The Lancet Healthy Longevity, Numero 5, 2024, Pagina/e e370-e378, ISSN 2666-7568
Editore: Elsevier BV
DOI: 10.1016/s2666-7568(24)00043-6

Non-peer reviewed articles (3)

Advance care planning in dementia

Autori: David J Oliver, Simone Veronese, Ida J Korfage, Jenny T van der Steen
Pubblicato in: The Lancet Neurology, Numero 24, 2025, Pagina/e 563, ISSN 1474-4422
Editore: 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?

Autori: Jenny T. van der Steen, Lex M. Bouter
Pubblicato in: European Journal of Epidemiology, Numero 40, 2025, Pagina/e 137-139, ISSN 0393-2990
Editore: Kluwer Academic Publishers
DOI: 10.1007/s10654-025-01205-0

Nieuw onderzoek advance care planning dementie

Autori: Bahar Azizi
Pubblicato in: Huisarts en wetenschap, Numero 63/1, 2020, Pagina/e 59-59, ISSN 0018-7070
Editore: 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.

Autori: Jingyuan X (须静媛), Smaling HJA, Schoones JW, van der Steen JT, Achterberg WP.
Pubblicato in: Palliative Medicine, Numero 37, 2023, Pagina/e 1S
Editore: Sage

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

Autori: Xu Jingyuan, Hanneke J.A. Smaling, David R. Mehr, Kevin Craig, Wilco P. Achterberg, Jenny T. van der Steen
Pubblicato in: Alzheimer's & Dementia, Numero 19, 2024, ISSN 1552-5260
Editore: 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)

Autori: 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
Pubblicato in: Alzheimer's & Dementia, Numero 16/S7, 2020, Pagina/e e041542, ISSN 1552-5260
Editore: 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

Autori: van der Steen J, Nakanishi M, Van den Block L, Korfage IJ
Pubblicato in: BMJ Supportive & Palliative Care, Numero 13(Suppl 4), 2023, Pagina/e A11
Editore: BMJ Publishing Group

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

Autori: 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
Pubblicato in: Palliative Medicine, Numero 38(1S), 2024, Pagina/e 69
Editore: Sage

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

Autori: Katherine McGough, Taylor Bosworth, Jingyuan Xu, Hanneke Smaling, Jenny van der Steen, David Mehr
Pubblicato in: Palliative and end-of-life care, 2024, Pagina/e 7093
Editore: 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

Autori: Jenny van der Steen, Ida Korfage
Pubblicato in: Innovation in Aging, Numero 7, 2023, Pagina/e 541-542, ISSN 2399-5300
Editore: Oxford University Press (OUP)
DOI: 10.1093/geroni/igad104.1778

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

Autori: Jingyuan X (须静媛), Smaling H, Nakanishi M, Shinan-Altman S, Radbruch L, Gaertner J, Achterberg W, Mehr D, van der Steen J
Pubblicato in: Palliative Medicine, Numero 39(2S), 2025, Pagina/e 306
Editore: 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]

Autori: van der Steen J, Evans N
Pubblicato in: 8th World Conference on Research Integrity 2-5 June 2024, Numero PP012, 2024
Editore: WCRI

Other (2)

Researcher Discretion: Navigating ambiguity and uncertainty in research practice

Autori: Tom van Drimmelen, Nienke Slagboom, Lex Bouter, Ria Reis, Jenny Theodora van der Steen
Pubblicato in: preprint, Numero n/a, 2024
Editore: Center for Open Science
DOI: 10.31222/osf.io/2vah6

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

Autori: Jenny T van der Steen, Xu Jingyuan, Willemijn Tros, Jeanet W Blom
Pubblicato in: medRxiv, Numero preprint, 2025
Editore: Cold Spring Harbor Laboratory
DOI: 10.1101/2025.06.06.25329142