Timely dying, suffering in dementia, and a role for family and professional caregivers in preventing it: Commentary to: “Timely dying in dementia: Use patients’ judgments and broaden the concept of suffering.”

Jenny T. Steen, van der, Trijntje Scheeres_Feitsma, E.P. Schaafsma

Research output: Contribution to journalArticleAcademicpeer-review


Broadening the concept of suffering in dementia to five types of suffering including suffering
of family caregivers as proposed by Terman et al., may help raise awareness on
a need to relieve suffering when living with dementia and adopt a holistic approach.
However, as objective criteria in advance care plans for severe enough suffering to stop
assisted feeding or other life-sustaining treatment in people with advanced dementia,
these still need interpretation in the context of, for example, available treatment,
and change in coping. New is the proposal to broaden severe enough suffering to suffering
of family, including “bi-directional empathic suffering.” We believe this creates
new dilemmas regarding responsibility and may increase feelings of guilt. Quantifying
suffering by adding up moderate suffering could further complicate matters. Therefore,
we argue that a health care professional should guide the process and assume
responsibility over current decisions to follow a person’s previous wishes.
Original languageEnglish
JournalAlzheimer's and Dementia
Issue number1
Publication statusPublished - 2024


  • Dementia

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