Decision Trajectories in Dementia Care Networks: Decisions and Related Key Events

Leontine Groen-van de Ven*, Carolien Smits, Karen Oldewarris, Marijke Span, Jan Jukema, Jan Eefsting, Myrra Vernooij-Dassen

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


This prospective multiperspective study provides insight into the decision trajectories of people with dementia by studying the decisions made and related key events. This study includes three waves of interviews, conducted between July 2010 and July 2012, with 113 purposefully selected respondents (people with beginning to advanced stages of dementia and their informal and professional caregivers) completed in 12 months (285 interviews). Our multilayered qualitative analysis consists of content analysis, timeline methods, and constant comparison. Four decision themes emerged—managing daily life, arranging support, community living, and preparing for the future. Eight key events delineate the decision trajectories of people with dementia. Decisions and key events differ between people with dementia living alone and living with a caregiver. Our study clarifies that decisions relate not only to the disease but to living with the dementia. Individual differences in decision content and sequence may effect shared decision-making and advance care planning.

Original languageEnglish
Pages (from-to)1039-1071
Number of pages33
JournalResearch on Aging
Issue number9
Publication statusPublished - 1 Oct 2017
Externally publishedYes

Cite this