title: Decision Trajectories in Dementia Care Networks: Decisions and Related Key Events.
abstract: 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.
authors.affiliation: 1 Research Group Innovating with Older Adults, Centre of Expertise in Health Care and Social Work, Windesheim University of Applied Sciences, Zwolle, The Netherlands.
authors.forename: Leontine
authors.initials: L
authors.lastname: Groen-van de Ven
authors.affiliation: 1 Research Group Innovating with Older Adults, Centre of Expertise in Health Care and Social Work, Windesheim University of Applied Sciences, Zwolle, The Netherlands.
authors.forename: Carolien
authors.initials: C
authors.lastname: Smits
authors.affiliation: 1 Research Group Innovating with Older Adults, Centre of Expertise in Health Care and Social Work, Windesheim University of Applied Sciences, Zwolle, The Netherlands.
authors.forename: Karen
authors.initials: K
authors.lastname: Oldewarris
authors.affiliation: 1 Research Group Innovating with Older Adults, Centre of Expertise in Health Care and Social Work, Windesheim University of Applied Sciences, Zwolle, The Netherlands.
authors.forename: Marijke
authors.initials: M
authors.lastname: Span
authors.affiliation: 1 Research Group Innovating with Older Adults, Centre of Expertise in Health Care and Social Work, Windesheim University of Applied Sciences, Zwolle, The Netherlands.
authors.forename: Jan
authors.initials: J
authors.lastname: Jukema
authors.affiliation: 2 Department of Nursing Home Medicine and EMGO Institute for Health and Care Research, Free University Medical Centre, Amsterdam, The Netherlands.|3 Zonnehuisgroep IJssel-Vecht, Zwolle, The Netherlands.
authors.forename: Jan
authors.initials: J
authors.lastname: Eefsting
authors.affiliation: 4 Scientific Institute for Quality of Healthcare (IQ healthcare), Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands.|5 Radboud Alzheimer Centre, Nijmegen, The Netherlands.
authors.forename: Myrra
authors.initials: M
authors.lastname: Vernooij-Dassen
mesh_terms: D000203:Activities of Daily Living; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology; D003657:Decision Making; D003704:Dementia / Q000175:diagnosis / Q000628:therapy*; D018450:Disease Progression; D005190:Family; D005260:Female; D006801:Humans; D057187:Independent Living; D007326:Institutionalization; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D009735:Nursing Homes; D011446:Prospective Studies; D012449:Safety; D012944:Social Support
keywords: decision-making; dementia; illness trajectories; qualitative research