Study Investigates ‘Friendsourcing’ as a Way to Provide Support to Alzheimer’s Caregivers

A new Facebook app can provide emotional support to unpaid caregivers of Alzheimer’s disease patients, according to a study.

Researchers at Indiana University Purdue University Indianapolis developed the app as part of an investigation that looked at “friendsourcing” as a type of peer support group intervention. In particular, they wanted to see if friendsourcing could be beneficial in providing answers to emotional and informational issues that arose in support group interventions.

The study, “Friendsourcing Peer Support for Alzheimer’s Caregivers Using Facebook Social Media,” was published in the Journal of Technology in Human Services.

A variant of crowdsourcing, which is typically used to raise funding, friendsourcing was described by the authors as the recruitment of “online participants who share membership in a social network that makes their volunteerism meaningful when they join to achieve an outcome.”

The study was composed of four parts:

• a pre-intervention phase, where participants completed an online survey and phone interview, and installed the study Facebook app.
• a six-week intervention phase, where participants interacted with peer caregivers in a closed Facebook group via a web app, and reacted to feedback about anonymous caregiving questions the research team posted to each participant’s Facebook news feed.
• a post-intervention phase, during which participants completed a survey, semistructured interview, and optional online reflection group.
• a follow-up phase, where participants completed a transformation learning survey six weeks after completion of the intervention.

After the six-week intervention phase, caregivers reported improved stress, burden, and support through online peer support. When emotional and informational questions were answered, caregivers experienced a feeling of increased support.

Additionally, qualitative data analysis of the intervention identified positive effects as far as gaining new knowledge on caregiving and applying it, as well as reduced stress in the acceptance of the caregiving role.

“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, PhD, an assistant professor in the IU School of Social Work and a member of the Facebook app research team, said in a university news release.

The study is believed to be the first to examine friendsourcing as a way to provide online support to Alzheimer’s caregivers.

A 2017 report by the Alzheimer’s Association estimates that, in the U.S., more than 15 million family members and other unpaid caregivers provided an estimated 18.2 billion hours of care to people with Alzheimer’s or other dementias.

Additionally, the report says that, in 2016, caregivers of people with Alzheimer’s or other dementias provided an estimated 18.2 billion hours of informal (or unpaid) assistance, a contribution to the nation valued at $230.1 billion. The value of informal care (not including caregivers’ out-of-pocket costs) was nearly equal to the costs of direct medical and long-term care for dementia in 2010.

The burden of caregiving also disproportionately affects women. A 2015 Behavioral Risk Factor Surveillance System survey found that of all caregivers who spend more than 40 hours per week caring for someone with dementia, 69 percent were women.

Similarly, female caregivers may experience higher levels of burden, depression, and health issues than men. As a result, women are more likely to indicate a need for individual counseling, respite care, and support groups.