Collaborative care models that feature care navigation have been found to have a range of benefit for people with dementia (PWD) and their caregivers, but their effect on end-of-life (EOL) outcomes has not been robustly evaluated.
Objectives
Our primary objective was to evaluate the effect of the Care Ecosystem–a telephone-based collaborative care model for dementia with care navigation–on EOL outcomes for PWD and their caregivers. Our secondary objective was to use qualitative feedback from participants to identify supports and services that would be helpful at end of life, including how the Care Ecosystem and other EOL supports could be improved.
Methods
Mixed-methods analysis of the Care Ecosystem trial conducted 2015-2022. Pre-mortem and post-mortem surveys included close-ended validated measures (eg, satisfaction with end-of-life care, caregiver self-efficacy) and open-ended questions about EOL care.
Results
There were 138/124 dyads randomized to Care Ecosystem and 76/65 randomized to Usual Care in the pre-mortem/post-mortem cohorts. Compared to Usual Care, Care Ecosystem caregivers had higher ratings of caregiver self-efficacy prior to PWD death (Adjusted unstandardized Beta 0.94 95% CI 0.23, 1.65, P = 0.01), but caregiver’s satisfaction with EOL care did not differ between groups (Adjusted odds ratio 1.42, 95% CI 0.67, 2.99. P = 0.36). Qualitative analysis revealed Care Ecosystem provided helpful emotional and practical support, but participants wanted more anticipatory guidance, more information about hospice care and earlier referral, and better coordination with the healthcare team.
Conclusion
Our findings highlight opportunities to improve the EOL experience of PWD through collaborative care models and beyond.
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