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Donna Benton portrait by John Skalicky

Donna Benton, director of the USC Family Caregiver Support Center

Presumptive Democratic presidential nominee Joe Biden recently outlined a plan to spend more $400 billion to improve caregiving for older Americans. Among his proposals: lower Medicaid waitlist times for home and community care services and provide tax breaks to people who care for older family members themselves.

Experts like Donna Benton, research associate professor at the USC Leonard Davis School of Gerontology, say this national attention to the needs of family caregivers is long overdue.

“Twenty-three percent of caregivers say that just by being a family caregiver, their health has been made worse,” said Benton, director of the USC Family Caregiver Resource Center. “And why is that? Because they’re taking their relatives to the doctor and they’re not going to the doctor themselves for their own health care. Because they may not have time to do it. They have to make a choice. I can either get my relative, who is sicker than I am, to the doctor. Or I can go to work. Or I can use my sick time for me. And so, you know, having to make those kinds of choices— that means that we really need to have better policies overall for long term care services and supports in our communities.”

Here are some of Benton’s suggestions for what caregivers need and how to bring those better supports, services and policies about:

Build in breaks for caregivers

“What we can do for caregiving is have policies that help relieve some of that care when we’re not able — so that we don’t always have to make a choice between, say a paycheck and caring for someone, going in sick to work and caring for our relative, being able to sleep and caring for our relative. So we need to have built in policies that allow for breaks, allow for alternatives when we choose to have them there. And all of those things may not be a direct pay to the caregiver, but it provides more options for care, for both the caregiver and the person they’re caring for.”

Use personal stories to advocate for caregivers

“People get scared about talking to a legislator or their elected official and they go, ‘Well I don’t know how to develop policies.’ Well, you know what? You don’t have to come up with the wording. What you can do is tell your struggle, tell your story, tell not just the struggles but also why you do what you do. And your story will be enough for the policymakers. They’re the ones that need to understand where the gaps are. And to understand what your needs are. And so when you tell your story all you have to add is, ‘And I wish that someone could do blah.’ Don’t worry if it’s there or not right now. You just give out your wish list.”

Address racial and socioeconomic health disparities

“You know, the pandemic right now has really just removed that very thin veil that was covering up the health disparities and disparities in social determinants of health in our society right now. Racism has always pushed our African-American, Black, Latino, and other ethnic and racial groups to the margins in terms of how we’ve set up policies to help them with family care overall. Even when the in-home support services were set up, part of that was that there were not reimbursements for being a caregiver in terms of benefits that you could pay into Social Security or things like that. So that people that worked in domestic work never could, kind of, build up equity for themselves— financial equity. And then when it comes to health disparities right now for the African-American community, diseases like Alzheimer’s are considerably higher among that population and we’re more at risk because of other health disparities. And that all comes down to the fact that we’ve had health policies that have not been equal or access to health care has not been equal. And so that our older adult population might be sicker than other populations. And during this during the time of COVID that health disparities have just been shown through the fact that we have much higher rates of death and infection among the African-American population… And we have to look at, you know, where people are living and do we have enough medical facilities in the neighborhood? Do we have enough adult daycares and child care centers in neighborhoods? Do we have enough grocery stores in the neighborhood? And do we have the right types of food and fresh vegetables and things in the neighborhood?”

Provide better support for dementia caregivers

“So I think for dementia, the policies need to be there so that we get better diagnosis, that we have more physicians who are trained to recognize and help family members, that social service and the family because, you know, it’s not going to be— the physician isn’t going to be there to help with support groups. They’re not going to become the support group person. They’re not going to help them navigate, so other social services. But if they make the right referral to, say, an Alzheimer’s Association or AARP or a California Caregiver Resource Center system. When you make that referral, that actually helps start the process so that the caregiver will have somebody who they can call once, you know, whenever they need to— over the course of many years as the disease progresses, you’re going to need different training, different information.”

Address caregivers’ mental health needs

“Almost 50 percent of family caregivers express some form of depression, anxiety, and they end they could really have benefit from being with somebody who really understands caregiving, can talk to them and help them through with their depression/anxiety. Being able to have enough support groups in their neighborhood. Having adult daycares all of those things that you can really advocate for.”

Increase investment in social programs

“The more that we invest in our social programs, you won’t have as much use of the health care system. So it’s not that you have to suddenly find money. It’s there. It’s where we prioritize it and where we move it.”

Identify as a caregiver

But family caregiving surprisingly most people don’t even think of themselves— they say ‘I’m a mother, I’m the daughter, I’m the son, and I’m the spouse,’ but they don’t put ‘and… I’m a caregiver.’ So first you have to self-identify as a caregiver because the issues are there. People are having to choose between going to work and putting the person they’re caring for at risk because there’s no— they don’t have enough paid sick time or they don’t have protected time for work. So once caregivers identify themselves, then you can ask for things like, ‘if I’m caring for someone, can I be more eligible for respite so that I can take a break and have somebody else come in just to for safety. So that I can get a little more sleep. So that I can go to my own doctor’s appointments. So that I can just enjoy a meal without interruption for a little while.’ You can look for policies that help with education, so that you feel comfortable and confident in how you’re helping the caregiver.”

If you are in California, contact a California Caregiver Resource Center

‘Well, pre-COVID and post-COVID, I think it’s important that caregivers look for support from both formal agencies that are out there such as, in California we have the California Caregiver Resource Centers that are serving— just focusing on you, the family caregiver across the states. … A lot of it starts with a phone call, so that you have someone that you can talk to that understands what you’re going through. … You can start by calling even 1-800-540-4442, so that you can get connected to the right resource center.”

To learn more about Benton’s caregiving insights, listen to her interview on this recent episode of Lessons in Lifespan Health, a podcast from the USC Leonard Davis School of Gerontology.

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