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

> **NIH NIH R01** · UNIVERSITY OF MISSOURI-COLUMBIA · 2020 · $732,301

## Abstract

Caregiver Speaks: A Technologically Mediated Storytelling Intervention for Family Caregivers of
 Individuals with Alzheimer’s Disease and Other Dementias
ABSTRACT
This randomized controlled trial will test an intervention for an understudied population – family caregivers of
persons living with dementia (PLWD). This project is the first of its kind to longitudinally follow family caregivers
of PLWD into bereavement. Furthermore, the intervention, Caregiver Speaks, employs an innovative
storytelling approach – photo elicitation (the use of photos to elicit thoughts, feelings, and reactions to a
person’s experience) – to encourage family caregivers to make meaning of their caregiving and bereavement
experiences as a way of reducing depression, anxiety, and ultimately grief intensity. Caregiver Speaks is
deployed via a readily available social media network (Facebook), which allows easy access for already
overburdened family caregivers of PLWD, and can improve their social support. Preliminary work
demonstrates that 1) this project is feasible as an RCT intervention study of caregiver experiences, 2) the
research team can conduct this type of storytelling intervention via Facebook, and 3) family caregivers use
(and want to use) social media during active caregiving and into bereavement, despite their heavy care
burdens. The research team will base the proposal on Park and Folkman’s meaning-making model of stress
and coping. This model illustrates how individuals cope with adverse life events (i.e., trauma, or death of a
loved one) by reconstructing and transforming the event’s meaning and incorporating the reappraised meaning
into one’s larger self-narrative. Caregiver Speaks uses storytelling in the form of photo-elicitation, in order to
facilitate this meaning-making. Caregivers share photos and discussions regarding their caregiving and
bereavement experiences in a private, facilitated Facebook group. This model suggests that caregivers’ ability
to make sense of (meaning making), and find benefit in an adverse life situation (caregiving and bereavement)
will be validated through social support, and result in reduced depression, anxiety, and grief intensity.
Caregivers will be randomly assigned to either: 1) Group 1, which will receive the Caregiver Speaks
intervention, or 2) Group 2, which will receive standard care, including the standard care for bereavement. The
research team will use both quantitative and qualitative methods in parallel and equal status to measure the
intervention’s efficacy. The overall hypothesis is that participating in Caregiver Speaks during caregiving and
into bereavement will reduce caregivers’ depression and anxiety, and as a result will reduce grief intensity in
bereavement. The three specific aims are to: 1) determine the efficacy of the Caregiver Speaks
intervention in reducing depression and anxiety among family caregivers of people with dementia, 2)
examine the intervention’s effect on grief intensity among berea...

## Key facts

- **NIH application ID:** 9859002
- **Project number:** 1R01AG059818-01A1
- **Recipient organization:** UNIVERSITY OF MISSOURI-COLUMBIA
- **Principal Investigator:** Debra Parker Oliver
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $732,301
- **Award type:** 1
- **Project period:** 2020-02-01 → 2020-11-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9859002

## Citation

> US National Institutes of Health, RePORTER application 9859002, Caregiver Speaks: A Technologically Mediated Storytelling Intervention for Family Caregivers of Individuals with Alzheimer's Disease and Other Dementias (1R01AG059818-01A1). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/9859002. Licensed CC0.

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