How can Digital Health Support America’s 40 Million Caregivers?


With more Americans aging in place, the burden placed on caregivers has grown exponentially. In spite of continuous consumer health technology expansion, the nearly 40 million caregivers in this country have historically been left out of the digital health conversation.

To develop supportive technologies specifically for the caregiver population, HITLAB conducted a series of pilot studies in partnership with Project Catalyst, a program that puts the 50-plus consumer at the center of innovation processes through research to improve quality of life. 

Caregiver technology is a virtually untapped market estimated at $280 billion. Innovations in this space can alleviate some of the burden placed on family caregivers, but only if it supports them in the right way at the right time.

The pilot studies conducted by HITLAB and Project Catalyst tested technologies in three key areas of need identified by previous research: care coordination, emergency alerts, and in-home aide services.

Providing digital tools to coordinate care

In a previous study conducted by HITLAB, caregivers identified a need for tools to improve communication, coordinate tasks with others, schedule prompts, and provide appointment reminders.

We tested a smartphone-based care coordination platform designed specifically for caregivers. In the pilot study, 30 participants spent 30 days using the platform, which integrated tools designed to meet the needs reported by caregivers.

Prior to joining the Care Coordination Pilot, 65% of participants used simple organizational systems (such as pen and paper) to keep track of their responsibilities. 86% of participants in the study thought that technology was important for helping them coordinate their caregiving responsibilities. However, while 53% felt the smartphone platform we tested had some benefits, nearly all participants reported that the product was not designed in a way that met their needs. Most returned to their former means of care coordination, but were optimistic that new tools, if designed effectively, could support them.

Addressing safety to improve peace of mind

Before joining the Personal Emergency Response Systems (PERS) Pilot, nearly all participants expressed concerns around their loved ones’ safety. Despite many feeling like they needed some kind of emergency monitoring support, none reported previously using any emergency monitoring tool.

We set out to understand why caregivers weren’t using PERS devices. Caregivers and their care recipients reported avoiding PERS devices due to high cost, lack of awareness around options, and perceived associated stigma with the tools.

Participants were randomized to receive PERS devices that contained functions including emergency alerting capabilities, GPS tracking, and mobile alerts to caregivers. After using the devices for 30 days, 85% of caregivers said they had greater peace of mind, while 90% of care recipients felt more independent around their safety and well-being. Nearly all study recipients –caregivers and care recipients alike—said they’d recommend a similar device to others.

This study gives encouraging evidence that PERS devices can alleviate some of the fears and concerns caregivers have about their loved ones’ safety. These tools have great potential to improve caregiver experiences, and innovators would do well to focus on addressing some of the barriers to their adoption.

Testing services to support caregivers with in-home aides.

Often caregivers need additional professional support in caring for their loved one, but many struggle to find an aide that meets their requirements, cost constraints, and caregiving concerns. The Home Aide Pilot study was conducted in two parts: a set of two focus groups to identify challenges in hiring home aides, and a pilot test of an online platform to help caregivers select and work with home aides.

The focus group identified several of the reasons why caregivers struggled to hire home aides, including the emotional strain of hiring a stranger to care for a loved one.The pilot test of the online platform found that it alleviated some of the common stressors caregivers encounter in finding and hiring home aides. 82% of participants found a suitable home aide using the platform and 100% of those caregivers were satisfied with the care procured through the platform. Caregivers liked using the platform to find an aide, and felt that the human elements of the platform, which allowed caregivers to determine chemistry with potential aides, made it especially supportive.

Using caregiver insights to innovate for the future

The results from these studies provide valuable insights into how innovators can support the needs of the growing caregiver population. “The findings show that caregivers see an opportunity for technology to better support them,” said Dr. Alison Bryant, Senior VP of Research at AARP, “But the design must consider the unique aspects of caregiving and offer as much flexibility as possible.”

“Caregivers consistently expressed gratitude to our research team for seeking their opinions, and asking them about their challenges, needs, and behaviors. We need to prominently feature caregiver voices prominently when designing technologies to serve them.”

Technological solutions could vastly improve conditions for caregivers, and there are plenty of opportunities for discovery and innovation in this space. Our work has served as a starting point from which we can call upon innovators, investors, and product developers to pursue promising solutions to support the millions of Americans providing care to their loved ones.