Trajectories of care of community-dwelling people living with dementia: a multidimensional state sequence analysis

BACKGROUND: The type and level of healthcare services required to address the needs of persons living with dementia fluctuate over disease progression. Thus, their trajectories of care (the sequence of healthcare use over time) may vary significantly. We aimed to (1) propose a typology of trajectories of care among community-dwelling people living with dementia; (2) describe and compare their characteristics according to their respective trajectories; and (3) evaluate the association between trajectories membership, socioeconomic factors, and self-perceived health. METHODS: This is an observational study using the data of the innovative Care Trajectories -Enriched Data (TorSaDE) cohort, a linkage between five waves of the Canadian Community Health Survey (CCHS), and health administrative data from the Quebec provincial health-insurance board. We analyzed data from 690 community-dwelling persons living with dementia who participated in at least one cycle of the CCHS (the date of the last CCHS completion is the index date). Trajectories of care were defined as sequences of healthcare use in the two years preceding the index date, using the following information: 1) Type of care units consulted (Hospitalization, Emergency department, Outpatient clinic, Primary care clinic); 2) Type of healthcare care professionals consulted (Geriatrician/psychiatrist/neurologist, Other specialists, Family physician). RESULTS: Three distinct types of trajectories describe healthcare use in persons with dementia: 1) low healthcare use (n = 377; 54.6%); 2) high primary care use (n = 154; 22.3%); 3) high overall healthcare use (n = 159; 23.0%). Group 3 membership was associated with living in urban areas, a poorer perceived health status and higher comorbidity. CONCLUSION: Further understanding how subgroups of patients use healthcare services over time could help highlight fragility areas in the allocation of care resources and implement best practices, especially in the context of resource shortage. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12877-023-03926-x.