Modeling trajectories and transitions: results from the New York University caregiver intervention

Current research fails to capture the temporal dynamics of chronic disease in favor of cross-sectional snapshots of symptoms and outcomes.

The aim of this study was to estimate the effects of comprehensive psychosocial support on trajectories of spouse caregivers' well-being related to the nursing home placement transition.

Data from the New York University Caregiver Intervention, a randomized controlled trial of a comprehensive support program for spouse caregivers of persons with Alzheimer's disease, were utilized. A convenience sample of 406 spouse caregivers of community-dwelling persons with Alzheimer's disease was enrolled over a 9.5-year period in an Alzheimer's disease research center in New York City. Outcome measures, including the Zarit Burden Inventory and Geriatric Depression Scale, were used to assess the differential effects of nursing home placement and of the intervention on spouse caregivers. In-person interviews of spouse caregivers took place every 4 months during the first year of participation and every 6 months thereafter for up to 16 years; 385 caregivers provided sufficient follow-up data for all analyses.

Longitudinal models found that wives were more likely than husbands to indicate reductions in burden in the months after placement in an institution. Wives also reported greater decreases in depressive symptoms after placement in an institution when compared with husbands.

The inclusion of transitions and health trajectories in a randomized controlled trial offers an intriguing picture of how comprehensive psychosocial interventions can help families navigate the challenges of chronic disease care. The results also indicate how advances in nursing science can facilitate future research in the modeling of trajectories and transitions in the dementia care context.