Harnessing Technology to Understand the Burdens of Caregiving

09/18/2015 03:08 pm ET Updated Sep 17, 2016

I've previously written about the physical, emotional, and financial burdens of family caregiving, but the experiences I've shared were personal or anecdotal. It's well known that caring for a family member takes an incredible toll, but just how much has never been properly quantified. So we were excited to learn about the Atlas of Caregiving Project (ACP), a research effort supported by the Robert Wood Johnson Foundation.

The ACP will outfit 12 families with body cameras that will transmit photos throughout the day showing how caregivers spend their time and focus their efforts. The families also will wear sensors that will collect biomeasures of their stress levels and help identify the activities that triggered them. The sensors also will help identify activities that caregivers find rewarding and joyful. The collected data could provide a valuable roadmap to identifying meaningful ways to better support caregivers.

While the ACP is a worthy effort in itself, so is the rationale the Robert Wood Johnson Foundation has used to support it. I will let program director David Adler explain it in his own words:

Caregiving is a health care challenge. With an aging population and costly institutional care, we're going to see more and more parents relying on their children and other family members to care for them in the home. Many elderly people say they would prefer to stay in their homes, but for many that is only feasible with a high level of assistance.

It's also a public health challenge. Caregiving exacts a toll on the caregiver's health, whether because it takes time away from exercising, preparing healthy meals and getting a good night's sleep, or because of the stress and emotional strain of caring for a loved one.

Adler also notes the significant economic burdens of caregiving.

Family caregiving often comes at substantial costs to the caregivers themselves, to their families, and to society. According to AARP, family caregivers provided $470 billion worth of care in 2013. And the same study explains that nearly 40 percent of adults caring for an adult partners, spouse, or family member report a moderate or high degree of financial strain as a result of providing care. The work of caregiving goes uncompensated and the family members providing it are often left in a difficult position. Furthermore, as demographics change and the nation is likely to have fewer family caregivers available, the question of how to provide this care will increasingly be an economic one.

In order to achieve our vision for a Culture of Health, we must integrate public health and health care, which have traditionally operated in silos, to ensure people get the help they need when they need it. Working with family caregivers, who sit at the intersection of these two systems, just makes sense. The needs of caregivers may require the health care system to work differently by incorporating them more into care plans and providing the right information to them. At the same time, social services outside of the health care system are crucial. Transportation, heating and food assistance, as well as people who can help caregivers navigate complicated health care and social service systems may go a long way in easing the burden of caregiving.

We applaud the Robert Woods Johnson Foundation for taking such a broad view of health care and understanding that family caregiving is a critical component. The ACP could prove to be a groundbreaking effort in helping families better manage the care of their loved ones.