Caregiver speaks is a randomized trial of a Photo elicitation intervention for caregivers of Alzheimers patients.

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

Inclusion Criteria:

1. be a designated family caregiver (i.e., a family member or friend providing unpaid care) of a PLWD who is enrolled in hospice care,
2. be at least 18 years old,
3. be involved in decisions related to their loved one's hospice care,
4. have access to a digital camera or other photo-taking device such as a cell phone
5. be willing to photograph images they feel capture their caregiving and bereavement experiences
6. be willing to set up a Facebook account and join the private Facebook group, 7) have access to e-mail for REDCap survey data collection

Exclusion Criteria:

• none

No individual data will be shared

The baseline analysis population excludes those who were not truly randomized. Some participants who cared for the same patient were assigned to the same group (without any randomization) as the first participant from that cohort who was truly randomized, so these additional participants were not included in our analysis since we do not consider them truly randomized.

Adverse events were monitored from baseline through 150 days in the active caregiving phase, and first measure after patient death through 180 days in the bereaved phase. Events were monitored while participants was enrolled in the study, which in some cases was shorter than the duration of assessment (150 days in active caregiving phase/180 days in bereavement phase).

This is a minimal risk study and thus it is unlikely a serious adverse event would occur due to the nature of the intervention.