Recognizing decision needs: first step for collaborative deliberation in dementia care networks

Patient Educ Couns. 2017 Jul;100(7):1329-1337. doi: 10.1016/j.pec.2017.01.024. Epub 2017 Feb 4.


Objective: This study describes the process elements of decision-making for dementia, in order to enrich a model to facilitate shared decision-making for professionals working with people with dementia and their informal caregivers.

Methods: We performed a qualitative study based on secondary analysis of 117 interviews from 23 care networks consisting of people with dementia, their informal caregivers and professionals. Findings were compared to an existing model of collaborative deliberation.

Results: We made an enhancement to the existing collaborative deliberation model, to include: (1) constructive network engagement, (2) recognizing the need for a decision, (3) defining what to decide on, (4) developing alternatives, (5) constructing preferences through deliberation and trying out alternatives, (6) multiple preference integration, and (7) evaluating decision-making.

Conclusion: In describing the process elements of decision-making in dementia, this empirical study proposes a modification of the model of collaborative deliberation for the context of dementia care. The adaptation highlights the special attention needed to recognize and define what to decide on, try out alternatives, and handle conflicting interests and preferences.

Practice implications: Professionals should be attentive to mark the start of the decision-making process and work with participants towards a shared view on the pressing matters at hand.

MeSH terms

  • Caregivers / psychology*
  • Communication
  • Cooperative Behavior*
  • Decision Making*
  • Dementia / psychology
  • Dementia / therapy*
  • Humans
  • Netherlands
  • Patient Participation / psychology*
  • Patient Preference
  • Physician-Patient Relations
  • Qualitative Research
  • Social Behavior