Dr. David Wilkerson is part of research team looking to provide support to unpaid caregivers of people with Alzheimer’s disease


Everyday more than 15 million unpaid caregivers provide care to persons with Alzheimer’s disease with little outside support and often at the risk of their own health.

Now a team of researchers, including Dr. David Wilkerson of the Indiana University School of Social Work, will use an Innovation Grant awarded by the Regenstrief Institute, to see whether a Social Microvolunteering app developed for Facebook could help provide support many caregivers are now lacking.  The social microvolunteering app communicates with the Facebook community and can pushes and retrieve information to the entire community or only selected groups within the community.

The team, which also includes Dr. Daniel Bateman, a gerontology psychiatrist with IU School of Medicine and Erin Brady, a faculty member at the IUPUI School of Informatics and Computing, hope to have an answer to that question by early fall. The three met through their participation in the Sandra Eskenazi Center for Brain Innovation eHealth group and decided to join forces to explore the possibility that their social microvolunteering application could aid caregivers

Dr. Bateman will help the team understand the needs of caregivers; Brady developed and researched the social microvolunteering idea in an application for persons with limited vision. Social microvolunteering is a simple and brief form of volunteer service usually done virtually through social networks and which requires no long-term time commitment.  In research with persons having low vision, for example, it connects an individual with a question to a group of potential answerers, leveraging the social networks of a core group of supports to expand the scale of answerers available and increase the speed of responses; Dr. Wilkerson’s interest has to do with patient-centered care and creating a holistic care environment that includes caregivers and strengthens the resource of caregiving.

If the research project shows the application is effective, it could prove to be an inexpensive way to provide support to millions of caregivers. The numbers of unpaid caregivers trying to survive and care for loved ones with Alzheimer’s disease is simply staggering. In 2014, 15.7 million unpaid caregivers took care of persons with Alzheimer’s disease providing a total of 17.9 billion hours of care (Alzheimer’s Association 2015). 

Providing care comes with its own risks though. Caregivers have higher rates of depression, anxiety, insomnia, cardiovascular disease and healthcare resource use (Huehs, 2014) making caregiver self-management an important target for intervention (Huis in het Veld et al., 2015). 

Dr. Wilkerson explained the team will be investigating small groups of 5 to 8 caregivers that have Facebook accounts. The group will be asked what informational and emotional support questions they would like to get answered in alternating weeks of the research. This aspect of group discussion is anticipated to be a first step in the development of mutual support and will generate questions that will be pushed to the larger Facebook community for the purposes of social microvolunteering. The social microvolunteering app retrieves their answers and potentially relevant answers are sent back to the caregiver group for their deliberation. The online caregivers’ group will then discuss online which answers seem the most relevant and then take action.  Dr. Wilkerson stated the caregivers would give authorization through their Facebook page to use the application for the test period.

The project has a projected budget of about $30,000 and they are moving forward to recruit caregivers willing to participate in the project. The team will post flyers in health clinics that serve Alzheimer’s patients inviting them to participate in the research project. Beyond providing support, the application will allow participants to participate without having to travel to attend meetings with other caregivers, thus they won’t have to worry about finding someone to stay with their loved one or bring the patient along. Plus, there is no cost to participate.

The team expects to recruit 24 to 26 people who will be divided up into four group by April and then start the project in May.

“If our intervention can increase support, it can potentially improve caregiver health and in conjunction with primary healthcare interventions extend the amount of time that a persons with Alzheimer’s can remain at home,” Wilkinson noted. 

Rob Schneider