There’s a daughter-care crisis in America. This is why health care needs to address it.

Daughter reviews prescription medications with her aging mother

Women are disproportionately taking on the responsibility of caring for aging parents, sacrificing their professional and personal lives in the process.

Unfortunately, their struggles are largely unseen and ignored.

There are almost 44 million unpaid caregivers in the United States, more than 75% of whom are female, according to the National Center for Caregiving. The average caregiver is a 49-year-old woman who provides around 25 hours of care each week to a loved one, whether it’s an aging parent or parents, a spouse or even a disabled adult child. This “volunteer” caregiving job takes a huge personal and financial toll: Women on average lose almost $325,000 in compensation to caregiving, according to a 2011 joint report by MetLife and the National Alliance for Caregiving. Female caregivers are also nearly six times as likely to suffer depressive symptoms and anxiety than non-caregivers. Research even suggests that caregivers who report high levels of emotional and mental strain have more than a 60% higher risk of death.

As a geriatrician, I know this area all too well. I take care of older adults and adults with disabilities, and I’ve been interacting with caregivers since I graduated from medical school in 1992. But I didn’t really have my own “aha!” moment until about seven years ago, when my father suffered a devastating stroke. For years, he’d been a caregiver to my mother, who was diabetic and beginning to experience cognitive issues. But after his stroke, he could no longer cook and drive and make sure she was getting the right amount of insulin.

My siblings and I moved our parents from Miami to northeastern New Jersey, where we all lived. Once we got them settled (which in itself was an enormous task), I learned that most providers don’t understand a daughter’s world: the exhaustion of balancing relationships with one’s spouse, children and parents while at the same time trying to tackle a full-time job—all while negotiating health care that’s provided more often in a community setting than in a hospital. I felt lost and abandoned, even as a longtime provider in the same field. During those years, I was consumed with guilt: guilt that I wasn’t available to my parents as much as I would have liked to be, and guilt that because I was helping to care for my parents, I was struggling to provide equivalent care and attention to my spouse, children and patients. I felt as if I was not doing anything well.

My parents, unfortunately, passed away a couple of years ago, but I still deal with caregiving every day. I see the devoted children, largely daughters, who bring their parents in for appointments, and I recognize the stress and exhaustion they carry. It’s a health crisis that will only worsen as 10,000 more boomers turn 65 every day. A generation ago, if your grandfather had a stroke, he died soon afterwards. Now, with healthcare advancements, he’s being discharged from the hospital—often with all sorts of instructions for care. An unintended consequence of progress is that families are expected to bring elderly family members home and take over their complex medical care. This is uncharted territory, new to this generation of caregivers, with no roadmap to follow.

Most healthcare providers have been trained to focus primarily on the patient. They need to shift their focus to include caregivers as well.

 

As both a geriatrician and a daughter who’s been there, I have several suggestions about what should be done to help solve this problem.

Make caregivers the center of the healthcare team, not the periphery.

When I first met with my mom’s new endocrinologist, I explained to her that my mother wouldn’t be able to get an insulin shot three times a day because the aides we hired to stay with her weren’t authorized to administer medication. The endocrinologist looked at me with confusion and said, “This is what you have to do.” Because I realized that the treatment plan she suggested was not going to be successful, I pushed back. I advocated for a treatment plan that would meet our needs, and I explained what our family could and could not do. We were finally able to come up with a regimen that worked for everyone. This is known as shared decision-making.

Collaborating with caregivers shouldn’t be a last-resort strategy. Thankfully, Congress has started to realize this and passed the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act last year. The act directed the Secretary of Health and Human Services to create a 30-member advisory council that will recommend specific actions government officials, medical providers and healthcare systems can take to support family caregivers. Personally, I think one of the first items on their list should be changing outdated federal and state regulations. We now have the medical technology to keep people alive years longer, but our policies haven’t evolved alongside it. Why can family members, for example, be trained to administer injections, but the home health aides they hire can’t? It’s nonsensical and puts more burden on caregivers for no good reason.

Adopt policies that encourage caregivers to take care of themselves.

Studies consistently show that caregivers skimp on their own health—they don’t eat well, they don’t sleep well, and they don’t exercise or make time to see their own doctor. But when I speak to caregivers in my practice, I make clear to them that while they may feel guilty for setting aside time to go for a walk, they need to protect some time for themselves.

Another way to help caregivers take care of themselves is to ensure they are on solid financial footing. Many caregivers—mostly women—will drop down to part-time work or leave their jobs entirely to take care of a loved one. As a result, they forfeit pay and other benefits, such as paid health insurance or matching contributions to a 401(k). We shouldn’t be asking women to choose between caretaking and their career—we should be providing support instead.

One way to do this is to increase federal and state funding for programs, such as Respite Care Programs, and provide financial support to caregivers. There are several bills languishing in Congress that do just that. The Lifespan Respite Care Reauthorization Act of 2019, for example, authorizes $20 million in 2020 for planned and emergency respite programs, increasing that amount by $10 million annually in order to reach $60 million in 2024. There’s also the Credit for Caring Act, which provides up to $3,000 in tax credits to working family caregivers.

Write, call and ideally meet with your elected representatives and/or their staff to urge them to support these bills and to sponsor others like it. The elected officials considering these bills most likely aren’t caregivers and do not fully recognize the impact the proposed legislation will have on health outcomes. They need to fully understand that the sacrifices caregivers are making to take care of their loved ones are an integral part of our modern healthcare system.

Make sure caregivers have access to all available supports and services.

In our rapidly evolving healthcare system, hospitalized people are discharged very soon after admission and sent home with family members who are expected to assume complex medical and nursing roles. Clearly, caregivers need more support and guidance. Since 2014, 40 states have now enacted Caregiver Advice, Record and Enable (CARE) laws that require hospitals to identify and educate caregivers before patients are cleared to go home. It’s a good start, but we need more and better training. Most healthcare providers have been trained to focus primarily on the patient. They need to shift their focus to include caregivers as well.

There are many caregiving resources both online and within communities. AARP, for example, has a How-to Resource Center, where they provide tips and advice for caregivers. The Family Caregiver Alliance has online support groups. But most caregivers are overwhelmed and don’t have time to seek out help. That’s why physicians should be screening caregivers for signs of depression and distress, and if they notice anything, provide the necessary referrals.

This isn’t easy and it’s not going to happen quickly. But we’re making leaps and strides in modern medicine every day. We should be following the same trajectory with caregiving, which has become an important aspect of health care, as well. That way, we can turn a moment of crisis into a moment of real, profound change.

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