Diagnosis and Disruption: Population-Level Analysis Identifying Points of Care at Which Transitions Are Highest for People with Dementia and Factors That Contribute to Them

Abstract

Objectives To examine transitions that individuals with dementia experience longitudinally and to identify points of care when transitions are highest and the factors that contribute to those transitions. Design Population-based 10-year retrospective cohort study from 2000 to 2011. Setting General community. Participants All individuals aged 65 and older newly diagnosed with dementia in British Columbia, Canada. Measurements The frequency and timing of transitions over 10 years, participant characteristics associated with greater number of transitions, and the influence of recommended dementia care and high-quality primary care on number of transitions. Results Individuals experience a spike in transitions during the year of diagnosis, driven primarily by hospitalizations, despite accounting for end of life or newly moving to a long-term care facility (LTCF). This occurs regardless of survival time or care location. Regardless of survival time, individuals not in LTCFs experience a marked increase in hospitalizations in the year before and the year of death, often exceeding hospitalizations in the year of diagnosis. Receipt of recommended dementia care and receipt of high-quality primary care were independently associated with fewer transitions across care settings. Conclusion The spike in transitions in the year of diagnosis highlights a distressing period for individuals with dementia during which unwanted or unnecessary transitions might occur and suggests a useful target for interventions. There is an association between recommended dementia care and outcomes and evidence of the continued value of high-quality primary care in a complex population at a critical point when gaps in continuity are especially likely.