reports

Diagnosis and disruption: understanding guideline-consistent dementia care and patterns of transition experienced by individuals with dementia

Vancouver, BC, Canada: University of British Columbia (doctoral dissertation).

University of British Columbia, Vancouver, BC, Canada

Introduction: Early detection and management, as outlined in dementia guidelines, can improve outcomes and potentially reduce the number of transitions experienced between care-facilities. The objectives of this thesis were to: conduct a critical assessment of the literature on actual versus guideline-consistent dementia care; use population-level data to examine variations in receipt of guideline-consistent dementia care; understand longitudinal patterns of transitions and the factors that contribute to transitions; and assess if receipt of guideline-consistent dementia care and/or high quality primary care are associated with the number of transitions experienced.

Method: Population-level administrative data in British Columbia were used to identify cohorts of individuals newly diagnosed with dementia in 2001/02 and 2009/10. Dementia guidelines were used to characterize clinical care individuals could receive. The proportion of patients diagnosed with dementia in 2009/10 who received guideline-consistent dementia care and the probability that patient characteristics affected the likelihood of receiving each process was assessed. Those diagnosed with dementia in 2001/02 were followed forward 10-years after the first point of diagnosis and points of care when transitions were highest as well as factors that contribute to those transitions were assessed. The association of receipt of guideline-consistent dementia care and/or high quality primary care with the number of transitions experienced in the year of diagnosis was assessed using negative binomial regression.

Results: Older patients were less likely to receive guideline-consistent dementia care. A quarter of the cohort received an antipsychotic or non-recommended benzodiazepine. Individuals living within rural health-authorities or of low income were more likely to receive antipsychotic treatment. Transitions were highest in the year of diagnosis and at end-of-life, driven by acute hospitalizations. Higher morbidity, living within rural health-authorities, and having behavioral symptoms associated with dementia were strongly associated with the number of transitions experienced. Lastly, receipt of guideline-consistent dementia care and high quality primary care, independently, were associated with fewer transitions across care settings.

Conclusion: Patterns of inequality by age and income may signal barriers to guideline-consistent dementia care. The spike in transitions in the year following diagnosis highlights a distressing period for individuals with dementia, but suggests a useful target for interventions.