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Averting a Crisis: Funding a Bold Vision of Family Caregiving

Chantal's Care Network Map from the Atlas of Caregiving Pilot

For several years we’ve heard the warnings: there’s a looming caregiving crisis. There are not enough caregivers for an aging America. Demographics are shifting — by 2030, twenty percent of the population will be over 65 — while care costs are shifting from health systems and employers to families. As a result, family caregivers are now providing the majority of the ‘care’ in healthcare. With family caregivers already overwhelmed, what does this future crisis hold? More work and more stress for fewer people with fewer finances? What happens to living? What happens to society?

We’d like to imagine a different future.

Fast forward to a different 2030, one in which family caregiving is easier and more efficient than ever before. One in which family caregiving is sustainable as a principal activity, recognized as a fundamental building block of society – an essential part of being human. Coordinated services are readily affordable and available, professional providers and family caregivers are seamlessly integrated, and workplaces offer flexibility and acceptance. There are products and technology-enabled tools that ease the daily burdens of family caregiving, and policies that reflect and support the dynamic reality of caregiving in society.

This is a hopeful and much more humane future. And we believe it can happen.

So how do we get there? First, we need a greater understanding of both the vast diversity and shared experience of caregiving situations and communities. We need innovative research that leads to meaningful and actionable data. We need innovative entrepreneurs and policy makers with the creativity and initiative to transform this data into relevant solutions. And we need innovative funding to make this future a reality.

The Atlas of Caregiving pilot study was a first step toward reaching this greater understanding of family caregiving. Our work highlighted opportunities for employers, entrepreneurs, and providers. For the funding community, two key findings emerged:

Significant resources are required to develop necessary data about family caregiving.

Our pilot study was successful. Despite its limited scope, it yielded rich data and new information. In addition, it provided much needed perspective on the breadth of resources efforts such as the Atlas of Caregiving will require to scale. If those of us who are striving to improve the lives of family caregivers are to succeed in making family caregiving easier and more efficient, we are going to need the support of government, institutional investors, and philanthropists alike.

It’s worth taking a risk. In funding research and exploration, there are no guarantees. Traditional expectations of funding — measurable outputs, clear outcomes, tangible deliverables, immediate impact, financial ROI — will not be met through a single study. But in laying new groundwork, funders can open the possibility of significant new discoveries. The Atlas of Caregiving pilot was funded by the Robert Wood Johnson Foundation, based on the potential our new approach had to reveal important new data on the day-to-day realities of family caregiving, supporting its broader focus on healthcare, public health, and economic impact. It was a risk worth taking: not only did the project deliver powerful insights and validate a new research methodology, it led to unexpected information and improvements for family caregivers now.

While there is great need to grow advocacy, capacity, and resources for family caregivers and the existing support networks serving them, it is simply not enough. A play-it-safe approach is unlikely to lead to a different future. Indeed, true innovation is not just a slightly better version of what what have today.

It’s a bold vision, and there’s a lot of work to be done if we are to avert an imminent crisis in caregiving. Join us, and lead the way.

About the Atlas of Caregiving Pilot Study

The Atlas of Caregiving Pilot Study combined emerging technology with traditional ethnographic interviewing to enable a comprehensive look at family caregivers’ lives. Our 14 Pilot participant families all live within two hours of San Francisco. Caregivers ranged in age from 30 to 73, and the care recipients from 3 to 101. They are managing a diverse set of conditions including Alzheimer’s, cancer, cerebral palsy, cystic fibrosis, diabetes and Parkinson’s.

Each participant took part in some or all of the following:
• One-on-one interviews
• Logging their caregiving and non-caregiving activities, including how stressed they felt
• Wearing a Narrative Clip, a small, wearable camera which took photos roughly every 30 seconds
• Wearing an Empatica E4, a wrist sensor which collected data on movement, heart rate, and electrodermal activity
• Having a Netatmo Weather Station placed in their home to collect data on noise and CO2 levels, temperature and humidity
• Having SmartThings Motion Sensors placed throughout the home, these collected data on movement

The Atlas of Caregiving Pilot Study was supported by a grant from the Robert Wood Johnson Foundation, in collaboration with the Family Caregiver Alliance.

Except where noted, this work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.