Involuntary care – capturing the experience of people with dementia in nursing homes. A concept mapping study

Marike E. de Boer, Marja F.I.A. Depla, Brenda J.M. Frederiks, Annemarieke A. Negenman, Jolanda M. Habraken, Carlijn H. van Randeraad-van der Zee, Petri J.C.M. Embregts, Cees M.P.M. Hertogh

Research output: Contribution to journalArticleAcademicpeer-review

9 Citations (Scopus)


Objective: To avoid restraints and involuntary care caregivers should be aware if and how a patient resists care. This article focuses on behavioural expressions of people with severe dementia in nursing homes that are interpreted by their formal and informal caregivers as possible expressions of their experience of involuntary care. Method: Concept mapping was used, following five steps: (1) brainstorming, (2) rating, (3) sorting, (4) statistical analysis & visual representation and (5) interpretation. Specialists (n = 12), nurses (n = 23) and relatives (n = 13) participated in separate groups . Results: The views generated are grouped into clusters of behaviour, presented in graphic charts for each of the respondent groups. The large variety of behavioural symptoms includes, in all groups, not only the more obvious and direct behavioural expressions like aggression, resistance and agitation, but also more subtle behaviour such as sorrow, general discomfort or discontent. Conclusion(s): In the interpretation of behavioural symptoms of people with severe dementia it is important to take into account the possibility of that person experiencing involuntary care. Increased awareness and understanding of the meaning and consequences of the behavioural expressions is an important step in improving dementia care by avoiding restraints and involuntary care to its maximum.

Original languageEnglish
Pages (from-to)498-506
Number of pages9
JournalAging and Mental Health
Issue number4
Publication statusPublished - 3 Apr 2019


  • Dementia
  • behavioural symptoms
  • concept mapping
  • involuntary care
  • patient perspective
  • restraint

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