Both organizations know that the statistics about America’s caregiving situation are daunting. First, there are the numerous health and emotional issues plaguing America’s 40 million-plus caregivers who don’t have the time to care for themselves — in fact, according to the Family Caregiver Alliance, approximately 40 to 70 percent of caregivers have clinically significant symptoms of depression, making them also prone to coexisting anxiety disorders, substance abuse or chronic disease.
Secondly, there is the financial strain associated with caregiving — AARP reported that caregivers spend anywhere from 20 to 44 percent of their annual income on out-of-pocket caregiving-related expenses, and that the 37 billion hours spent caregiving in 2013 equaled nearly $470 billion in economic value.
These numbers paint a disconcerting picture: caregiving in America has become a major health and financial issue on both an individual and societal level.
But with these numbers also comes hope: both AARP and Atlas believe that the current lack of awareness and resources for caregivers in America leaves much room for growth, improvement and solutions for the future.
With the shared goal of providing practical support for America’s family caregivers, both organizations have already made an impact of their own: while Atlas of Caregiving utilizes innovative research, fascinating insights and practical tools to make ground-breaking discoveries about caregiving, AARP works with legislators and community leaders to increase the awareness, research and support of family caregivers across the nation.
Bob Stephen, AARP’s Vice President of Caregiving and Health, has dedicated almost a decade to spearheading this effort, leading AARP’s development and implementation of strategy to support all family caregivers in America. Whether through advocacy, products/services, market influence, digital tools, community change efforts or consumer programs, Stephen has set the caregiving strategies for the entire nation and established partnerships with leading caregiving and health organizations to increase AARP’s impact.
When he learned about the innovative work of Atlas of Caregiving, he knew a much bigger impact could be made together than apart. Thus, the two organizations formed a powerful partnership dedicated to not only learning more about caregivers’ needs, but also to meeting them in impactful and realistic ways.
“The work Atlas is doing is probably among the most cutting edge work in terms of research for the needs of family caregivers,” Stephen said. “At AARP, research has been one of our strengths as well, so the ability to make sure we’re connected and can help each other is very important.”
Combining strengths to increase impact
Bob met Atlas of Caregiving founder & CEO Rajiv Mehta when Rajiv was presenting Atlas’ research insights at a round-table public policy institute in Washington D.C. on Family Caregiving and Technology. The two discovered their common goals through their mutual participation in the caregiving initiatives in Santa Barbara County, California.
“Based on the excitement and the results that have been created in Santa Barbara, we thought there was an opportunity for us to work together and see how AARP could potentially help scale and bring the work that Atlas of Caregiving has been doing to other parts of the country,” Stephen said.
The two organizations quickly saw the benefits of combining of their unique strengths to make a bigger impact in America’s ever-changing and ever-growing caregiving landscape.
“Atlas of Caregiving really digs into the data — to not just ask caregivers what they do, but to collect what they’re doing,” he said. “What we really like in working with them is that they’ve created some simple but powerful tools that can help family caregivers really think and address who’s involved in family caregiving.”
AARP is working with Atlas to bring CareMaps to families nationwide — a tool Stephen sees as a simple yet powerful way for caregivers, patients, and others in their network to more fully understand their caregiving ecosystem. All that’s needed to make a CareMap is a pencil and paper, but AARP is working with Atlas to build a digital version of the tool that will reach a larger population.
“What we’re trying to do is create change around the country, and that really has to happen at the personal and local level,” says Stephen. “Atlas, specifically with the CareMaps, is a way for us to reach people where they live and help them think through solutions; to help communities identify where there might be changes needed. It’s one way for us to start making an immediate impact on the lives of those who connect with it.”
Atlas’ CareMap tool uses a simple drawing to convey a powerful message: “I need more help.” The visual helps those in every aspect of a caregiving — from the patient to the caregiver to the health care worker and everyone in between — understand the role they play and, more importantly, the help they need to be more successful in their role.
“What we like about the CareMap tool is that it helps to create a very tangible picture of who all is involved in the care,” Stephen says. “And to start, then, thinking about who you need to involve in the conversations. From a community standpoint, too, it’s a great way to think through and identify who needs to be working together in the community — a really simple approach to an issue that’s been around for a long time, but in terms of coordinating, it’s a very powerful thing. And I like that it’s so graphical — it’s not just asking someone to write down everyone who helps, but it’s creating that picture.”
“We’re focused on the CareMap tool because it’s more tangible for us to be able to scale,” he continued. “Once we get the digital version of the tool, that’s going to really start to allow us to scale to even more people.”
Learn more about Atlas’ CareMap solution, including how to make your own CareMap, here.
Working together to prevent a crisis
Like Atlas, AARP knows the solutions lie in not only drawing attention to caregivers’ lack of resources, but in working together to support caregivers’ needs in order to prevent a shortage of healthy caregivers in the future.
“There are more people needing care and fewer to care for them, so our vision for family caregivers is that every family caregiver is aware that they’re not alone,” he said. “We want every caregiver to ideally have the help they need — Atlas is definitely identifying more of what family caregivers need, what they do and really quantifying it.”
“For us, on the more practical side of it, we see the CareMap as one of the ways for an individual to start organizing and identifying what help they need. And to the degree that we can work with Atlas — and maybe even start our own CareMap Workshops — that’s going to be raising awareness. It’s also going to help caregivers get the help they need while helping communities identify where the help doesn’t exist so they can improve it. To avert that [caregiving] crisis, you’ve got to visit the help that’s there.”
A dual approach: increasing both resources and awareness
Together, AARP and Atlas want to not only help caregivers understand the resources available to them, but to also help non-caregivers better understand what caregiving actually entails.
“The biggest misconception out there is that caregiving is just something that people do because it’s just part of being part of a family,” he said. “[People don’t realize] that what they’re doing is actually a very important job, one that billions of other people are doing, and that there is help available.”
While some communities in the U.S. may struggle to offer the necessary resources to their caregiving citizens, Stephen says, other communities struggle to bring awareness to the resources they already offer.
“It’s a little bit of chicken and the egg, because even with the great work happening in Santa Barbara, for instance, their biggest issue is probably awareness — they’re doing some great things, but if people aren’t aware of the solutions that are there, they won’t use them, and people can’t get the help,” he said.
“On the other hand, we can’t go too much on the awareness, because not every community is like Santa Barbara — in many communities, you don’t have the coordination or services that are there. The last thing we want to do is give people false hope that, ‘Hey, you’re a family caregiver, there’s help available,’ but in fact, the help doesn’t exist in their community. So I think it’s one of those things you have to go after really in both ways. It’s a little bit more community-specific as to which one’s more important.”
AARP’s Home Alone Alliance
Another way the two organizations are collaborating is through AARP’s Home Alone Alliance, a collaboration of public, private, and nonprofit organizations working together to change the way health care organizations and health professionals interact with family caregivers.
According to AARP, almost half (46 percent) of family caregivers say they perform medical and nursing tasks — such as managing prescriptions, helping a patient walk, or cleaning wounds — without having any training, background or assistance from medical professionals.
Whether it’s helping someone from the car to the wheelchair, helping someone who fell get up, or simply making your home a space more conducive to caring for an ill or elderly patient, the Home Alone Alliance’s goal is to provide effective solutions for family caregivers performing such complex and stress-inducing tasks.
The future of caregiving
Stephen’s hope for the future of family caregiving in America? “It goes back to provision,” he said. “We want there to be full awareness, not just among family caregivers, but among all the key stakeholders — lawmakers, employers, business leaders — that family caregivers exist and require help.”
“As the population ages, the family caregivers are critical to helping people stay independent and in their own homes, where they want to be,” he added.
For many family caregivers it is difficult to see the sort of support that might be useful to them. Atlas of Caregiving is helping to shed light on caregivers’ individual situations so that they can better understand the sort of support they might need. Communicating and finding this help in local organizations, support networks, or family members is another challenge.
Stephen hopes the help caregivers need becomes not only more accessible, but more coordinated. “In some instances, the help is there, but people don’t know about it; it’s not coordinated. And in some places, the help isn’t there, or there’s a huge waiting list. So for us, it’s about people knowing that family caregivers aren’t hidden and people knowing what they need is easily accessible.”
When asked what advice he would offer to a stressed and overwhelmed caregiver, Stephen says, “Ask for help. And depending on who you are, it may be that if you’re working, chances are that if you work for a larger employer, they probably have some help there to guide you. The biggest thing we hear from family caregivers is that they had to teach themselves how to navigate the system – and that shouldn’t happen. There are people who have been there, and by reaching out to organizations like AARP and the Family Caregiver Alliance, people don’t have to reinvent the wheel.”
Together with AARP, Atlas of Caregiving is innovating research and practical solutions that will continue making essential discoveries about caregiving.
“Atlas has been a great partner,” Stephen said. “Rajiv is probably one of the smartest people I’ve ever met, but he’s also so focused on the impact. We’re a social mission organization, focused on the impact. My area is impacting the lives of family caregivers. For Atlas of Caregiving, it’s the same focus, but it’s bringing that innovation forward in a very different way. They’ve been a great partner.”
Atlas of Caregiving looks forward to a continued collaboration and partnership with AARP. If you’re interested in learning more about AARP’s collaboration with Atlas or about how your organization can get involved with Atlas’ innovative work in caregiving, please contact us.
Ellen Barnes assisted in the writing of this post.