AARP sometimes informally summarizes its work as revolving around the three pillars of health, wealth and self. Perhaps unsurprisingly, the “health” pillar is particularly multifaceted, and we recently explored AARP’s initiatives around health security.
But there’s a lot more to explore in the “health” pillar. To help fill out the picture, we sat down with Bob Stephen, AARP’s vice president of caregiving health programs, to understand his team’s unique focus.
This interview has been edited for clarity and length.
Please tell us about yourself and your role at AARP.
I’m Bob Stephen; I’m the vice president of caregiving health programs with AARP, and I’m the issue lead across AARP for all things related to family caregiving and long-term care. I help come up with the strategy and then manage its execution.
What are some of the strategies you’re working on?
We have a strategy focused on advocacy, where we work on issues like increasing support for family caregivers and trying to change the system of long-term care, to make it more home- and community-based.
We have another strategy focused on equity, because there are a lot of disparities in terms of what is available to people. We also have a market-based strategy, looking for ways we can embed support for caregivers and long-term care into health care products that consumers already use.
And we have a strategy focused on outreach to consumers, where we ask: “How do we create great content? How do we get it into the hands of consumers and make sure it’s actually helping them?” My team has a major role in the outreach strategy, trying to reach and educate caregivers and employers in the communities where they live.
Can you say more about your outreach strategies?
The strategy that reaches the most people is our digital initiative; we average about 10 million unique family caregivers who come to our website and use our resources each year.
But once we have content, we can put it into the right format for wherever we want to reach people. And we want to reach caregivers where they are — which means, for example, having a presence in retail and pharmacy settings. We also work with about 7500 employers who are either distributing our resources or offering some of our courses.
And paper resources are still important, so we have paper versions of our resources, primarily our workbook and state resource guides. In all of them we have a focus on cultural adaptation so we’re being relevant to the people we’re trying to reach.
Have you been able to engage how effective your outreach has been?
We have data that shows that 55% of caregivers have used one or more of our resources, whether it’s workbooks or our website; or maybe they’ve read our articles or attended a webinar. And 90% of those who have used our resources are saying: “That really helped me improve my ability to care for my loved one.” So we know we’re on the right track — but we’d like to do even better.
You mentioned a workbook and a state resource guide as an example of resources you’re offering. What kinds of information do those contain?
Our big workbook for family caregivers essentially outlines the steps you need to take as a family caregiver — things like getting organized and getting a care team together. It has a variety of checklists that we’ve been told are especially helpful.
The state guides help connect people in specific states and communities with resources and local organizations that are available to them, such as support groups and transportation options. AARP isn’t providing these services themselves; we’re acting as a bridge to get the information out to people.
You also mentioned wanting to be culturally appropriate. How does your team approach that?
People need to see themselves in the help they're getting — and it has to be more than just changing the pictures or making sure things are in Spanish and other languages. We’ve done a lot of research and we know that you have to speak to family caregivers differently depending on their cultural context.
For example, if I’m talking to a Latino caregiver, I have to know that caring for loved ones is just a part of the culture: It’s expected that you’re going to care for your parents. In that case, I might not talk about needing to take a break for yourself; instead, I would talk about the value of caring for loved ones and how you want to do your best for them. Or if I’m working with an Asian American population, how I would talk about death is completely different.
You also have to recognize the disparity side of things: In a lot of communities, services you might recommend just don’t exist. So it’s about going deep and making sure that you’re being relevant to how people actually care for loved ones in those communities.
That disparity is real; and earlier you mentioned equity. Can you expand on those?
There are definite gaps in terms of quality of care. For example, COVID really exposed some of the gaps in long-term care — we saw that nursing homes with more African American residents tended to get hit harder by COVID. There are other kinds of gaps in terms of “deserts” where services just don’t exist.
These gaps have been decades in the making. We’re trying to tackle this problem, but one of the biggest obstacles we have is a lack of data, which makes it hard to pinpoint an area and say, “Aha!” and fix it. So we work with a lot of local partners who have credibility in various communities, to help us identify and fill in some of those gaps.
Is there anything else that you'd like folks to know about the work AARP is doing in this space?
One thing I would point out is that we’re reaching out and working with family caregivers who are 18 years old and up. That makes us unique in AARP, because that’s not the typical AARP audience. When we start talking to outside organizations, they assume we’re only working with AARP members or people who are 50-plus. Ultimately, working with younger caregivers benefits those who are 50-plus, but actually we’re working across the board.
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