Developing a question prompt list for the later stages of life with dementia

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Brief description

The project’s goal is to develop and evaluate a question prompt list for persons with dementia and their relatives. The question prompt list aims to encourage conversations with relatives and professional caregivers about the later stages of life and palliative care, and to facilitate decision making about treatment and care. This question prompt list provides information and sample questions.

Researchers

Authors and researchers

  • Jenny van der Steen, MSc, PhD, FGSA, LUMC and Radboudumc
  • Carla Juffermans, MD, LUMC
  • Mirjam Marjolein Garvelink, MSc, PhD, St. Antonius hospital, Department of value based healthcare, Nieuwegein
  • Freek Gilissen, Amsterdam UMC, location VUmc
  • Wim Jansen, MSc, Amsterdam UMC, location VUmc
  • Caroline Overbeeke-Couprie, BSc, Amsterdam UMC, location VUmc and Pieter van Foreest
  • Prof. Yvette van der Linden, MD, PhD, LUMC
  • Prof. Raymond Koopmans, MD, PhD, Radboudumc and stichting de Waalboog

Contact

Jenny van der Steen 

Participating organisations

Afdeling Public HealAfdeling Public Health en Eerstelijnsgeneeskunde LUMC, Leiden
Expertisecentrum Palliatieve Zorg LUMC, Leiden
Expertisecentrum Palliatieve Zorg VUmc, Amsterdam
Alzheimercentrum VUmc, Amsterdam
Radboudumc UKON, Nijmegen
Radboudumc Alzheimer Centrum, Nijmegen

Start study

End of 2017 

Expected completion

2021 

Description

Patients and relatives often do not know what symptoms, problems, and decisions they may encounter with the progression of incurable disease. Further, the emotions and uncertainty often involved in incurable disease also complicate asking questions that are important to the person in conversations with professional caregivers. Question prompt lists comprise sample questions to inspire asking questions and support patients and family in preparing for conversations with professional caregivers on palliative care, possible symptoms, and decisions around the end of life. Question prompt lists empower patient and family and help formulate key questions. Professional caregivers also benefit from a structured conversation.

In the case of dementia, talking about the later stages of life is not easy. Also, little is known about palliative care in dementia. A question prompt list can help ask questions that are personally relevant at a particular point. It also provides information about dementia and care around the end of life. The question prompt list may help organize thoughts about the later stages of life, help formulate questions, stimulate conversations with relatives and with professional caregivers, and facilitate decision making about treatment and care. This should result in persons with dementia and relatives receiving information that is relevant to them in a timely manner, and the best possible care based on their particular preferences.

The question prompt list has been developed together with persons with dementia in other countries, relatives of persons with dementia, and professional caregivers. Research evaluates and trials the question prompt list.

You can download the question prompt list in Dutch below at 'Documents'.

In collaboration with

  • Genevieve Thompson, RN, PhD, University of Manitoba, Winnipeg, Manitoba, Canada
  • Prof. Josephine Clayton, MBBS, PhD, FRACP, FAChPM, Sydney Medical School, University of Sydney and HammondCare, Sydney, Australia

Financing

Internal support by the LUMC, VUmc and Radboudumc university medical centers

Documents

Publications

Question prompt list evaluation
van der Steen, J.T., Heck, S., Juffermans, C.M.M., et al. Practitioners' perceptions of acceptability of a question prompt list about palliative care for advance care planning with people living with dementia and their family caregivers: a mixed-methods evaluation study. BMJ Open 2021;11:e044591. doi:10.1136/bmjopen-2020-044591

Question prompt list evaluation plus Supplementary material
van der Steen, J.T., Heck, S., Juffermans, C.M.M., et al. Practitioners' perceptions of acceptability of a question prompt list about palliative care for advance care planning with people living with dementia and their family caregivers: a mixed-methods evaluation study. BMJ Open 2021;11:e044591. doi:10.1136/bmjopen-2020-044591

Other question prompt lists

A brief question prompt list specifically for relatives of nursing home residents with dementia is available from the mySupport study. Further, you can access question prompt lists for persons with Parkinson’s disease and persons with atypical Parkinsonism.