Caregiver speaks: a randomized controlled trial of a storytelling intervention for hospice family caregivers of persons with dementia.

BACKGROUND AND

OBJECTIVES

Family caregivers of persons living with dementia experience significant emotional distress during end-of-life care and bereavement. Interventions supporting meaning-making and social connection may help mitigate anxiety and depression, and support caregivers' adjustment during bereavement.

RESEARCH DESIGN AND

METHODS

This randomized controlled trial evaluated Caregiver Speaks, a storytelling intervention for family caregivers of persons living with dementia. Participants from 5 hospices in the Midwestern and Northeastern United States were randomized 1:1 to intervention or control. Caregivers in the intervention joined private Facebook groups, engaging in structured photo-elicitation storytelling, and transitioned from active caregiving groups to bereavement groups post-loss. Controls received usual hospice bereavement care. Of 425 randomized caregivers (210 intervention, 214 control), 424 caregivers completed baseline, 113 intervention, and 144 control participants completed at least 1 active caregiving-phase survey; 62 intervention and 117 control participants continued through bereavement.

RESULTS

In the bereaved period, anxiety decreased significantly more in the intervention arm (-0.013 points/day) than in the control arm (-0.005 points/day, p < .05), a 2.16-point versus 0.83-point decrease over time. No significant effects were found for depression or grief intensity.

DISCUSSION AND IMPLICATIONS: Caregiver Speaks reduced anxiety among bereaved caregivers but did not demonstrate a statistically significant effect on depression or grief intensity. Findings highlight the potential of storytelling-based, online interventions to support caregivers, though certain adaptations to the bereavement curriculum may enhance its impact. The study's generalizability is supported by its diverse hospice agency recruitment. Future work should explore targeted mechanisms of change and intervention refinement.

CLINICAL TRIAL REGISTRATION NUMBER: NCT04103580.