Caregiver Speaks: A Technologically Mediated Storytelling Intervention

Principal Investigator: Dr. Debra Parker Oliver

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. 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 bereaved family caregivers of people with dementia, and
  3. describe how caregivers made meaning of their caregiving and bereavement experiences.