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Randomized Controlled Trial
. 2025 Jan;21(1):e14370.
doi: 10.1002/alz.14370. Epub 2024 Nov 19.

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

Katherine L Possin  1   2 , Sarah Dulaney  1 , Alissa B Sideman  2   3 , Andrew J Wood  1 , I Elaine Allen  2   4 , Stephen J Bonasera  5 , Jennifer J Merrilees  1   2 , Kirby Lee  6 , Winston Chiong  1 , Tamara L Braley  5 , Sarah Hooper  7 , Mia Kanzawa  8 , Rosalie Gearhart  1 , Helen Medsger  9 , Krista L Harrison  3   10 , Lauren J Hunt  2   3   4 , Rachel E Kiekhofer  1 , Christopher Chow  1 , Bruce L Miller  1   2 , Elan L Guterman  1
Affiliations
Randomized Controlled Trial

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

Katherine L Possin et al. Alzheimers Dement. 2025 Jan.

Abstract

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.

Keywords: care management; care navigation; caregiver burden; collaborative care; dementia; quality of life.

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Conflict of interest statement

Bruce Miller reported serving on the Scientific Advisory Boards of The Bluefield Project to Cure FTD, the John Douglas French Alzheimer's Foundation, Genworth Inc., the Larry L. Hillblom Foundation, the Kissick Family Foundation, and the Tau Consortium of the Rainwater Charitable Foundation; serving on the External Scientific Advisory Committees of the Arizona Alzheimer's Consortium, Massachusetts General Brigham Alzheimer's Disease Research Center (ADRC), and the Stanford ADRC; receiving royalties from Guilford Press, Cambridge University Press, Johns Hopkins Press, and Oxford University Press; serving as editor for Neurocase; serving as section editor for Frontiers in Neurology; and receiving grants P01 AG019724 and R01 AG057234 from the National Institutes of Health (NIH) and P0544014 from the Bluefield Project to Cure FTD. No other conflicts were reported. Author disclosures are available in the Supporting Information.

Figures

FIGURE 1
FIGURE 1
Participant flow.
FIGURE 2
FIGURE 2
Annualized weighted treatment effect of the care ecosystem over time. Caregiver depression and caregiver burden outcomes have been inverted so that for all outcomes, an increase above 0 denotes that the Care Ecosystem is more beneficial than usual care. The average treatment effect weighted for the proportion of active participants and adjusted for dementia severity are plotted with 95% confidence intervals.
See this image and copyright information in PMC

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