A Longitudinal Study of Transitions Between Informal and Formal Care in Alzheimer Disease Using Multistate Models in the European ICTUS Cohort

Abstract

Background: We aimed to describe longitudinal patterns of care in community-dwelling European patients with Alzheimer disease (AD), and determine patient-, caregiver-, and country-related predictors of transitions across different care levels.

Methods: Two-year follow-up data from ICTUS cohort (1375 patients with AD, 12 countries) were analyzed using multistate Markov models to describe transitions across states of care and identify their predictors.

Results: Of the patients, 61.3% stayed in the same state during follow-up, and only 9.5% experienced ≥2 changes between states. Six-month transition probabilities were 11% for informal to formal care and 13% for formal to informal care (in the community). Older age, male gender, poorer cognitive and behavioral scores, and country of residence were associated with transitioning from informal to formal care, but only country of residence was associated with the reverse transition.

Discussion: Changes between different types of care were rare during follow-up, and country factors in particular influenced these transitions.

Keywords: Alzheimer disease; Dementia; cohort study; formal care use; multistate model; transitions of care.