Entangled in uncertainty: The experience of living with dementia from the perspective of family caregivers.
Els van WijngaardenHugo van der WeddenZerline HenningRikke KomenAnne-Mei ThePublished in: PloS one (2018)
Our findings show that dealing with what Boss (2011) called 'ambiguous loss-experiences' is one of the most demanding aspects of living with dementia. Based on the findings, we have developed a model that depicts how people handle contingency and seek balance along the continuum of facing and resisting. Our study shows that resilience in the context of living with dementia should not be understood as merely an individual mental ability, nor as a set of behaviours, but rather as a social-ecological enterprise.