Evidence map›Paper›PMID 42185076›Full record

Trial reportThe Gerontologist2026

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

Abigail J Rolbiecki, Kyle Pitzer, Jacquelyn J Benson, Karla T Washington, Michelle Teti, Robin L Kruse, David R Mehr, Jamie Smith, Debra Oliver

Registry-linked trialAbstract readRandomized Controlled Trial
In one paragraph

Trial report in The Gerontologist, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04103580 (Caregiver Speaks), which is not on this map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT04103580 nacompletednot on this map

Caregiver Speaks: A Technologically Mediated Storytelling Intervention for Family Caregivers of Individuals With Alzheimer's Disease and Other Dementias

TypeinterventionalSponsorWashington University School of MedicineRan2020 to 2023Enrolled457ConditionsAlzheimer DiseaseArmsPhoto elicitation
3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

Abigail J RolbieckiInstitute for Research in the Social Sciences, Colorado State University, Fort Collins, Colorado, United States.ORCID 0009-0009-9653-0906
Kyle PitzerSchool of Medicine in St. Louis, Department of Medicine, Division of Palliative Medicine, Washington University, St. Louis, Missouri, United States.
Jacquelyn J BensonSchool of Medicine in St. Louis, Department of Medicine, Division of Palliative Medicine, Washington University, St. Louis, Missouri, United States.
Karla T WashingtonSchool of Medicine in St. Louis, Department of Medicine, Division of Palliative Medicine, Washington University, St. Louis, Missouri, United States.
Michelle TetiDepartment of Public Health, University of Missouri, Columbia, Missouri, United States.
Robin L KruseSchool of Medicine, Department of Family and Community Medicine, University of Missouri, Columbia, Missouri, United States.
David R MehrSchool of Medicine, Department of Family and Community Medicine, University of Missouri, Columbia, Missouri, United States.
Jamie SmithDepartment of Public Health, University of Missouri, Columbia, Missouri, United States.
Debra OliverSchool of Medicine in St. Louis, Department of Medicine, Division of Palliative Medicine, Washington University, St. Louis, Missouri, United States.

Funding

Caregiver Speaks: A Technologically Mediated Storytelling Intervention for Family Caregivers ofIndividuals with Alzheimer's Disease and Other DementiasR01AG059818 · NIA · WASHINGTON UNIVERSITY · PI PARKER OLIVER, DEBRA, ROLBIECKI, ABIGAIL J · 2020 to 2024
$3.6M
NIA NIH HHS 1R01AG059818-01A1NIA NIH HHS R01 AG059818
6 · The paper itself

Abstract

BACKGROUND AND

objectivesFamily 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

methodsThis 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.

resultsIn 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.

Indexed as

CaregiversDementiaHospice CareNarrationAdaptation, PsychologicalAgedAged, 80 and overAnxietyBereavementDepressionFemaleGrief TherapyHumansMaleMiddle AgedSocial SupportBereavementDementiaFamily caregiversHospice careStorytelling intervention

Identifiers

PMID42185076
PMCPMC13285843

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Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.