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

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.