ArticleBMJ open2017
Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare.
Article in BMJ open, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.
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Who cites it
10 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Shared decision-making for people living with dementia in extended care settings: a systematic review.BMJ open · 2018Pooled it
- Understanding the Dementia Care Triad: Findings From a Longitudinal Qualitative Study With People Living With Dementia, Their Carers, and Their Healthcare Professionals.Dementia (London, England) · 2026Article
- Qualitative exploration of how clinicians navigate divergence in older adult and family caregiver priorities.BMC geriatrics · 2025Article
- Seasonal differences in mobility and activity space in later life: a case study of older adults in the Northern Netherlands.Mobilities · 2024Article
- Potent Tau Aggregation Inhibitor D-Peptides Selected against Tau-Repeat 2 Using Mirror Image Phage Display.Chembiochem : a European journal of chemical biology · 2021Article
- Emotion regulation and decision-making in persons with dementia: A scoping review.Dementia (London, England) · 2021Article
- Life under lockdown and social restrictions - the experiences of people living with dementia and their carers during the COVID-19 pandemic in England.BMC geriatrics · 2021Article
- Dementia Friendly Care: Methods to Improve Stakeholder Engagement and Decision Making.Journal of healthcare leadership · 2021Review
- Reconsidering frameworks of Alzheimer's dementia when assessing psychosocial outcomes.Alzheimer's & dementia (New York, N. Y.) · 2019Review
- Dementia and Parkinson's Disease: Similar and Divergent Challenges in Providing Palliative Care.Frontiers in neurology · 2019Review
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo explore how people with dementia, their informal caregivers and their professionals participate in decision making about daycare and to develop a typology of participation trajectories.
designA qualitative study with a prospective, multiperspective design, based on 244 semistructured interviews, conducted during three interview rounds over the course of a year. Analysis was by means of content analysis and typology construction.
settingCommunity settings and nursing homes in the Netherlands.
participants19 people with dementia, 36 of their informal caregivers and 38 of their professionals (including nurses, daycare employees and case managers).
resultsThe participants' responses related to three critical points in the decision-making trajectory about daycare: (1) the initial positive or negative expectations of daycare; (2) negotiation about trying out daycare by promoting, resisting or attuning to others; and (3) trying daycare, which resulted in positive or negative reactions from people with dementia and led to a decision. The ways in which care networks proceeded through these three critical points resulted in a typology of participation trajectories, including (1) working together positively toward daycare, (2) bringing conflicting perspectives together toward trying daycare and (3) not reaching commitment to try daycare.
conclusionShared decision making with people with dementia is possible and requires and adapted process of decision making. Our results show that initial preferences based on information alone may change when people with dementia experience daycare. It is important to have a try-out period so that people with dementia can experience daycare without having to decide whether to continue it. Whereas shared decision making in general aims at moving from initial preferences to informed preferences, professionals should focus more on moving from initial preferences to experienced preferences for people with dementia. Professionals can play a crucial role in facilitating the possibilities for a try-out period.
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