Long-term effects of collaborative dementia care on quality of life and caregiver well-being.

INTRODUCTION: Collaborative dementia care models with care navigation, including the Care Ecosystem, improve outcomes for persons living with dementia (PLWDs) and their caregivers. The effects of continuous care over long periods have not been studied.

METHODS: In this randomized clinical trial with 456 PLWD-caregiver dyads with high caregiver burden, we evaluated the cumulative 5-year treatment effect on PLWD quality of life, health care utilization, caregiver depression, self-efficacy, and burden.

RESULTS: Five-year participation was associated with higher quality of life, lower caregiver depression, and higher caregiver self-efficacy (all p's < 0.05) with a trend for lower burden (p = 0.07). Treatment effects were most robust during the first 2 years. The effects on emergency department visits and hospitalizations were not significant.

DISCUSSION: The benefits of collaborative dementia care on PLWD quality of life and caregiver well-being are sustained for 5 years, and the dyads may experience the greatest benefit during the first 2 years.

HIGHLIGHTS: Collaborative dementia care with care navigation was evaluated over 5 years using a randomized clinical trial. The care was associated with better quality of life for the person with dementia and well-being for the caregiver. The most robust treatment effects were in the first 2 years.