Meaning making during bereavement as part of caregiver speaks, a narrative photo-elicitation intervention for Caregivers of persons living with dementia

A majority of persons living with dementia rely on informal family and friend caregivers. These caregivers shoulder immense responsibility while the person living with dementia is alive, and during bereavement are at risk for complicated grief or other psychobiological complications. Meaning making, the process of accommodating worldviews and beliefs to make meaning of a death, can mitigate the risk for complications of grief during bereavement. This meaning making can be facilitated by storytelling photo-elicitation interventions, which invite caregivers to narrate their experiences and emotions using images. Caregiver Speaks is one such photo-elicitation intervention. In this study, we sought to understand how caregivers of persons living with dementia who participated in Caregiver Speaks made meaning of their experiences. Researchers conducted a secondary qualitative analysis of text and image social media posts made by bereaved caregivers, employing a hybrid deductive-inductive approach. Six themes were identified: grieving, remembering, benefit finding, reconstructing identity, religious and spiritual coping, and connecting. These themes demonstrate that meaning making in caregivers of persons living with dementia was supported by Caregiver Speaks and expand on understanding of bereavement specific to caregivers of persons living with dementia. Our themes emphasize the significance of complete remembrance-of positive memories, but also of complex familial relationships and difficulties in caregiving and end of life. Additionally, we identified overwhelmingly positive religious coping, speaking to the role of faith in this population. Our theme of connecting also identified the novel ways in which caregivers might communicate through use of images, metaphors, and emojis to convey their emotions. Our findings support the use of storytelling, photo-elicitation interventions like Caregiver Speaks to prevent or mitigate grief complications in bereaved caregivers of persons living with dementia. They also suggest possible complementary interventions in bereavement support, such as facilitating remembrance or faith-based community outreach.