Jenny van der Steen is an epidemiologist researching how to improve care at the end of life of people with dementia and their family caregivers. She is the lead author of the European Association for Palliative Care (EAPC) white paper on palliative care in dementia. It defines palliative care in terms of 11 domains, and it defines optimal palliative care providing 57 recommendations based on evidence and expert consensus. Previous research includes observational and intervention studies mainly in people with dementia residing in nursing homes. It covers the various aspects of palliative care such as symptom relief, non-pharmacological interventions, and spiritual care. The research uses quantitative, qualitative or mixed methods, employing design and parallel methodological work as needed. Ongoing research includes advance care planning in dementia in both the nursing home and community settings.
Jenny van der Steen
Leiden University Medical Center