Mw. dr. ir. Jenny T. van der Steen

Associate professor


Jenny van der Steen is an epidemiologist working in the field of end-of-life care, and in particular palliative care for nursing home residents with dementia. She is an Editor of Palliative Medicine. She is the lead author of the European Association for Palliative Care (EAPC) white paper on palliative care in dementia, developed on behalf of EAPC with a team of 12 people from 6 countries. It defines palliative care in terms of 11 domains, and it defines optimal palliative care providing 57 recommendations based on evidence and consensus. It is highly cited (top 1% in its field). The original version and translations into Japanese, Russian, Croatian, Arab, Dutch and German are available from:


Previous research included nationwide observational and intervention studies in patients with dementia and pneumonia. These studies have resulted in a number of publications on, for example, methods to develop and evaluate guidelines, the practice of withholding curative treatment and distressing symptoms also in comparison to parallel work in the US,  along with products for clinical practice: guidelines and mortality risk scores. In parallel, methodological work assessed the reliability and validity of important outcome measures.

A broader 5-year prospective study on end of life with dementia (Dutch End Of Life with Dementia study, DEOLD, "Zorg bij Dementie") assessed factors associated with decision making, treatments, patient suffering, and family satisfaction. Collaboration with similar projects in Israel, Italy, and Belgium resulted in recommendations in areas where care needs improvement. Other studies on end of life in nursing homes include studies on spirituality, an evaluation of a booklet for families on comfort care, and a study testing properties of outcome measures to assess the experience of end of life with dementia. Recently she started work on selective reporting in science more generally.


To bring palliative care research to a higher level with a core group of researchers able to perform boundary-crossing research, integrating perspectives as needed from medicine, epidemiology, sociology, psychology, ethics, methodology and the overarching domain of research integrity. Creative yet thorough and independent research is needed to critically examine how to best innovate practice of care at the end of life.




Project lead

Identifying the terminal phase and need for palliative care in nursing home residents: action research with nursing staff to implement the SigMa Set (May 2017 - August 2019, Leiden-Amsterdam-Utrecht collaboration) 

Caring for relatives around the loss of a loved one: development and implementation of a brochure with recommendations for grief and bereavement support  (May 2017 - July 2019, Leiden)

Effects on quality of life and family caregiving experience by the Namaste Care Family program for advanced dementia (December 2014 - April 2019, lead of project in Amsterdam)

Care4Youngdem: Care for people with Young-Onset Dementia towards the end of life (September 2015 - August 2021, lead of project in Nijmegen) 

Involved in other projects:

EU FP7 PACE Project Comparing the Effectiveness of Palliative Care for Older people in Long-term Care Facilities in Europe.

Namaste Care trial projects in the UK and Canada (International Advisory Group)

Quality of life and dying in nursing home residents with dementia (Leiden University Medical Center)

Evaluation of sharing data with national data collection tool Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS) 

DEDICATED Palliative care in dementia (with Maastricht University) (September 2017 - August 2021) 


The most important publications are retrieved from PubMed, at


van der Steen JT, van den Bogert CA, van Soest-Poortvliet MC, Fazeli Farsani S, Otten RHJ, ter Riet G, Bouter LM. Determinants of selective reporting: a taxonomy based on a content analysis of a random selection of the  literature. PLOS ONE 2017, provisionally accepted.


Boogaard JA, de Vet HCW, van Soest-Poortvliet MC, Anema JR, Achterberg WP, van der Steen JT. Effects of two feedback interventions on end-of-life outcomes in nursing home residents with dementia: a cluster-randomized controlled three-armed trial. Palliat Med 2017, provisionally accepted.


Helton MR, van der Steen JT. End of Life Care. Chapter 23 in: Chronic Illness Care: Principles and Practice. Timothy P. Daaleman and Margaret R. Helton (Eds). Springer. Accepted chapter.


Davies N, Klapwijk MS, van der Steen JT. Palliative Care and Dementia. In: MacLeod R, Van den Block L (Eds). Textbook of Palliative Care. Springer Major reference works. Accepted chapter.









2017 - European Research Council (ERC) Consolidator Grant (2M) for research on dying with dementia and, in parallel, on research integrity and quality

2017 - Chaired our symposium at the largest conference on gerontology and geriatrics ever (IAGG/GSA, San Francisco) which the organising committee assigned the status of a "presidential symposium"

2014 - 2017 National prizes (3) and 2 nominations for 3 of my PhD-students

2012, 2013 Aspasia Supplements to Vidi career award 

 2010 - Vidi career award of the Netherlands Organisation for Scientific Research (NWO, Innovational Research Incentives Scheme*) 

2009 - EAPC Young Investigators Award, first prize for an outstanding contribution to palliative care, European Association of Palliative Care


2005 - Veni career award of the Netherlands Organisation for Scientific Research (NWO, Innovational Research Incentives Scheme*) 


2002 - "Volksgezondheidsprijs 2002" for dissertation; best work in public health in the Netherlands, Annual award from the “Vereniging voor Volksgezondheid en Wetenschap"

 * Prestigious Dutch individual research grants for excellent scientists awarded to the best researchers irrespective of research domain


Included in Academianet for outstanding women academics and scientists:



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