More than 15 million Americans who are living with Alzheimer’s disease and other forms of dementia will be cared for by close members of the family.
These unpaid caregivers are typically related to the recipient and assume responsibility for daily care and decision-making.
Caring for a person living with dementia greatly alters the daily lives of these caregivers, often dramatically. This can result in depression and anxiety, particularly as the patient nears death.
But family caregivers often lack the support they need during this most difficult time, intensifying both distress and grief, according to a report in Aging & Mental Health.
Caregivers who have pre-bereavement depression, anxiety and inadequate social support are then likely to experience more intense grief and distress after their loved one dies.
Albigail Rolbiecki, PhD, an assistant professor of family and community medicine, is the recipient of a $3.5 million grant from the National Institutes of Health to conduct an ongoing study about interventions for these family caregivers.
Rolbiecki’s study is called Caregiver Speaks, a storytelling intervention that uses photos to prompt thoughts, feelings and reactions related to a person’s experience.
According to preliminary results of her study published in 2019, when caregivers can share stories about their journey, they are better able to make sense of these experiences.
This becomes a way to reduce depression, anxiety and, ultimately, the intensity of grief.
Interventions that reduce depression and anxiety may significantly improve the caregiving experience and bereavement journey, according to the article “Predictors of complicated grief among dementia caregivers,” published in The American Journal of Geriatric Psychiatry.
Rolbiecki’s study followed hospice family caregivers through bereavement using a process called photo elicitation as a storytelling technique. Hospice is one of the few health care services that follow caregivers into bereavement.
In the study, participants take photographs and share stories about the pictures within a Facebook group before and after a loved one’s death.
The participants were recruited from five hospice agencies in the Midwest and Northeast serving a diverse population, including rural, urban and suburban areas.
To be eligible, a participant had to be a designated family caregiver, at least 18 years old and involved in decisions related to their loved one’s hospice care.
The participant also needed access to a photo-taking device such a cell phone and a willingness to photograph images that captured their caregiving and bereavement experiences.
They also had to set up a Facebook account, join a private study-related Facebook group and have access to e-mail for survey data collection.
“When a patient enrolls in hospice, a hospice staff member gives eligible caregivers a brochure explaining the study,” Rolbiecki said. “When family caregivers express interest, the staff member requests their verbal permission for a member of our research team to contact them.”
Because of Rolbiecki’s previous work with patients in chronic pain, she said she found between 10 and 30 participants lends itself to having meaningful interaction among group members.
“Within the Facebook group, participants share photos and personal stories of what it means to be an active caregiver,” she said. After a loved one dies, they transition into a group where the focus of the photos and conversation are then about bereavement.
Photos are the primary medium through which study participants engage with other group members. Before a loved one dies, caregivers are asked to take photographs that best capture their daily caregiving experience and then share them with others in the active caregiving Facebook group.
The group moderator asks the caregivers to focus their photography and discussion on their meaning as caregivers and show how that has changed over the course of the illness.
“Caregivers may capture their daily activities caring for their family member, their perceptions of themselves, and their interpersonal relationships,” Rolbiecki said. “They look at how these changed when they assumed the caregiver role and how caregiving affects their views of the future and their world.”
After the loved one dies, caregivers enter the bereavement phase of the study and are asked to take photographs capturing how their sense of self changed during this grieving period.
“This can include re-examined priorities for life, relationships with the living and continued bonds with the passed, and how their views of the world and future world have changed,” Rolbiecki said.
Hospice family caregivers have minimal risk by participating in this study, she said.
“Potential risks include sadness and renewed grief reactions, frustration or anxiety,” Rolbiecki said. “Participants also may feel nervous about sharing photos on Facebook and engaging with other hospice family caregivers through the private group.”
Although the research team controls membership, members of the Facebook group may also contact one another through the website.
“Caregiver Speaks uses a low-cost, readily-available platform to deliver the storytelling intervention,” Rolbiecki said. “This increases social support and enhances meaning-making in caregiving and bereavement.”