Caring for a loved one with Alzheimer's disease can be isolating, but researchers at Indiana University-Purdue University (IUPUI) Indianapolis have developed a Facebook “friendsourcing” app that is designed to help caregivers connect.
The app gives caregivers a support group on Facebook where they can pose emotional and informational questions. Members of the support group can then push those questions out to their Facebook friends. When a caregiver’s friend on Facebook answers a posed question, they can then enlist as a member of the support network.
The project is funded by a $29,000 grant that comes from the Regenstrief Institute at IUPUI.
In a small study published by the Journal of Technology in Human Services, the “friendsourcing” Facebook app helped decrease burden and perceived stress of unpaid Alzheimer's caregivers.
“Qualitative data analysis of the intervention identified positive effects in new caregiving knowledge acquisition and application and reduced stress in the acceptance of the caregiving role,” the study's researchers wrote. “Joining social networks in support groups through friendsourcing was feasible for Alzheimer’s disease caregivers who were familiar with social media, and can provide another means of guiding the development of their personal support networks.”
The study was made up of non-paid caregivers who provided care at least eight hours a week and have at least 40 friends on Facebook. Originally 60 participants started the preliminary survey and 23 completed the first survey. Of those, 12 were sorted into two Facebook groups. The intervention took place over a six-week period.
During the six weeks caregivers could interact in the closed Facebook group via a web app. Caregivers could react to feedback about anonymous caregiving questions that researchers posted.
In the study researchers acted as moderators, sometimes posing these anonymous questions and responding to comments. Each week the moderator facilitated a discussion about which question, emotional or informational, should be posed to the users' Facebook friends' social networks. Members would vote on a single question that should go out to their friends each week.
After the six-week intervention participants answered an online survey and took part in a semistructured interview where they could reflect on the group. Researchers followed up with participants six weeks after the intervention ended.
Participants reported a decrease in burden and perceived stress level, and a higher score for emotional and informational support after the intervention.
"Given the recent problems of social media, our study provides evidence of the social good that can be obtained with social media using telehealth innovations like friendsourcing, which we developed for supporting Alzheimer’s caregiving," David Wilkerson, an assistant professor in the IU School of Social Work and a member of the Facebook app research team, said in a statement.
This isn’t the only digital health product focused on supporting caregivers. In February the AARP Services and United Healthcare ran a Caregiving for Dementia Innovation Challenge. The contest included 245 contestants.
Among the winning products was an app designed to help train student caregivers, as well as a virtual reality tool that lets a caregiver experience aspects of what a dementia patient is going through.