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Over the past several years, the number of Americans who provide unpaid care to a family member over the age of 50 has climbed by more than 20 percent. Now, 42 million people are caring for older loved ones.
At the same time, Americans’ mental health has declined especially during Covid-19: more and more people today are seeking mental health services, including inpatient care, outpatient care, and prescription medications. According to our latest research, mental health issues are even more common among family caregivers than the general population. As the massive Baby Boomer generation enters their senior years, the caregiver mental health crisis is bound to grow.
While most people who care for their loved ones in their final years no doubt feel a sense of pride in their work, our research has found several unfortunate side effects of caregiving, such as high rates of anxiety and depression. To understand the emotional toll family caregiving can take and to discover which caregivers are at greatest risk of poor mental health, we asked nearly 1,500 unpaid family caregivers across the country about their experiences.
An estimated 42 million Americans are family caregivers for someone over the age of 50, meaning they assist an older adult family member or loved one with the tasks of daily living, which can include homemaking or personal care.
Our research indicates that while this number has grown over time, family caregivers tend to have a few things in common:
For most family caregivers, their situation isn’t a new one. Nearly 60 percent have cared for their loved one or family member for more than three years. Most of the family members they care for are over the age of 70. About one in 10 are 90 or older, and a large percentage of them (43 percent) live with their caregiver. Another 49 percent of people receiving care live in their own home or with roommates, and about 9 percent live in senior, assisted, or long-term care facilities.
While many people see caring for older or ill family members as an honor, caregiving can still cause emotional, physical, and psychological strain. According to the AARP, this is a growing issue, and our research confirms that caregivers are more likely than others to say they have anxiety, depression, or insomnia.
Taking care of an aging or ill family member can strain one’s mental health for several reasons. It can be emotionally difficult to see a loved one in pain or to see their physical or cognitive condition worsen over time.
“The hardest part of caregiving for my mother was the slow progression of a woman…who was the matriarch of the family. When you take care of someone day in and day out, especially when you live with them, you are watching them slowly decline and become more frail,” said Terry McGonagill, who cared for both her mother and in-laws for nearly 20 years.
Additionally, caretakers don’t get enough restorative rest as they balance their caregiving commitments with work and childcare, often over the course of several years. Additionally, some people take on a financial burden to care for their older loved ones, which can also negatively impact mental health.
During the Covid-19 pandemic, mental health issues increased in number and severity across the U.S., and those caring for individuals who are particularly vulnerable to the virus faced increased stress.
Although the severity of Covid-19 has decreased, caregivers are still dealing with a great deal of emotional strain. Compared to non-caregivers in our study, those who assist older adult family members or other loved ones are much more likely to experience near-constant anxiety, depression, or insomnia, and by a similar margin, they report “often or always” feeling overwhelmed by all the tasks they need to accomplish in a day.
When asked about the specific difficulties they’ve experienced in providing care for an older loved one, family caregivers frequently signaled signs of burnout — feeling stressed, overworked, tired, and depressed.
Note: Multiple responses allowed
Seven in 10 caregivers in our study said they feel emotional stress, and nearly two in three had trouble balancing their caregiving responsibilities with other demands or desires in their lives. About 40 percent struggled with sleep and had trouble setting boundaries on their time, while nearly as many reported financial strain as a result of caregiving. An AARP study found that about eight in 10 family caregivers spend money that’s not reimbursed by insurance or Medicare on expenses for their loved one, which includes household expenses, home modifications, medical costs, and more.
For many caregivers, looking after a loved one is nearly as time-consuming as a full-time job. On average, caregivers spend about 25 hours per week looking after their loved ones who need care. And for sole caregivers and those who live with the care recipient, their time investment is even more — 32 and 34 hours, respectively.
These hours are often filled with duties such as transportation to doctor visits, doing grocery shopping, or cooking and cleaning. But in the case of older adults who require help from another person to get to the shower or the toilet, it can also mean heavy lifting.
With all of these factors at play, it’s easy to see why caring for a loved one can be physically and emotionally demanding. Many of these issues, such as lack of sleep and financial difficulties, put caregivers at increased risk of developing mental health issues.,
While most caregivers reported similar difficulties, not all reported negative mental health symptoms. Being new to caregiving, having little health and support, and living with the person they help were all major risk factors for poor mental health.
Taking on the responsibility of providing necessary care for a loved one can feel very much like your entire world has changed. Major life changes, such as taking a new job, having a baby, or having a family member move into your home, can be very exciting, but change of any kind can also cause stress.
As such, those who have been family caregivers for a year or less are much more likely than more veteran caregivers to report poor or below average mental health, and they are more likely than other groups to have emotional stress related to caregiving. This may indicate that once caregivers adjust to their new roles, their stress may decrease and their mental health may improve.
That is not to say that veteran family caregivers don’t experience any difficulties. While they have slightly higher rates of good or excellent mental health, they also have the highest rates of financial strain and physical demands compared to new caregivers.
Caring for a loved one often requires hours of care each day for several years. Because of this, it’s essential for caregivers to have a community of support and help, though our research revealed this is not the case for many caregivers.
Nearly 40 percent of the caretakers in our study were the sole caretaker for a family member aged 50 or older. These people are at heightened risk of poor mental health because all the physical and emotional caregiving tasks fall to them alone. We know that sole caregivers put in more hours than the average caregiver — 32 hours per week compared to 25 hours for all caregivers.Sole caregivers are likelier than those with help to lose their temper with others, feel pervasive anxiety, and to experience depression.
While it may be difficult for some sole caregivers to seek help, experts say it’s essential for their health. Jennifer Brechtel, the Community Benefit Manager at Granite VNA, encourages family caregivers to look into respite care, which can often be less expensive than residential or nursing home care. This is a great solution for individuals who don’t have any family or friends in the area who could provide support.
“Consider respite care to give yourself a break, even if it’s just for a day or afternoon. Ask family members to help with the person or with their own daily tasks and share the load,” Brechtel said. “The biggest tip is for caregivers to be sure to make time for themselves and to take care of their own needs. They should be mindful of signs and symptoms of stress…and to find ways to alleviate the stress.”
Sole caregivers without support from friends or family may also benefit from joining a support group, either in-person or online. These groups are sometimes condition-specific (for example, for dementia caregivers), and some offer education in addition to emotional support. Some people might also be eligible for caregiver benefits from their health insurance providers, which can reduce the amount of day-to-day work that falls onto solo family caregivers.
“Caregivers should take a close look at their loved one’s specific health plan benefits. If you need help getting your loved one to a doctor’s office, for example, their health plan may offer a transportation benefit with rides to medical appointments and pharmacies,” said Christopher Ciano, President of Aetna Medicare. “Health plans can also offer access to more convenient care choices, like telehealth and in-home care, or prescription delivery options.”
According to AARP data, the percentage of older adults who need care and live with their caregiver has risen steadily over the past few years. This is likely due in part to the rising costs of residential care. Nursing home rates are around $7,000-$8,000 a month and are expected to continue to climb by as much as a third over the next decade.
Living with a family member can reduce costs for the person receiving care and can be very convenient for the caregiver. It also guarantees plenty of quality time together.
“I am very fortunate that I get to share each day with my mother, who can be unbelievably strong,” said Rachel Escio, who works from home and cares for her aging mother. “My mother’s schedule and appointments are in my calendar and I also inform her of mine so each day turns out to be a collaboration. With this day-to-day plan, we are both able to ensure that we are well.”
Even with strong communication between family members, this situation also has unique challenges, including:
These difficulties can have an impact on emotional health and wellbeing. Even when they have assistance from others, people who live with the person they care for experience unhappiness and anger at higher rates than those who live separately.
|Percentage experiencing negative feelings often or always
By whether or not the person they care for lives with them
|Living with the person receiving care||Living separately from the person receiving care|
|I feel overwhelmed, like there is not enough time in the day to get everything done.||52%||44%|
|I have trouble engaging with friends and family members.||28%||21%|
|Activities that once brought me relaxation and joy now leave me feeling listless.||27%||21%|
|I find myself losing my temper with others (especially the person in my care) more often than I used to.||19%||11%|
They also have higher rates of feeling overwhelmed and have trouble engaging with friends or family members. Caregivers who live with the family member they care for are also more likely than those who live apart to feel listless doing activities that once brought joy and relaxation, which is a primary symptom of depression.
Family caregivers who live with the care recipient report emotional stress at similar rates as those who don’t live with their family member. However they are much more likely to experience financial strain, loss of sleep, feelings of obligation, and depression.
Although caregiving is an extremely time-intensive role, just 55 percent of caregivers in our study were receiving outside support such as financial support, help in getting access to services, support from loved one’s physicians, respite care, and more. This lack of support is likely a risk factor for poor mental health.
“Family caregivers need to ensure that they have support when caring for a loved one. Being a caregiver can be extremely emotionally taxing, so it is so important to have a community for support and another person who can help with the caregiving duties,” said Raymond Dacillo, Director of Operations for C-Care Health Services.
The most common type of support caregivers do receive comes in the form of communication from their loved one’s physicians. Another 16 percent say they get help in accessing community or government services, and 14 percent receive financial support.
What do family caregivers need that they aren’t getting? Financial support. Forty-nine percent of family caregivers said that of the services they don’t currently receive, financial support would be the most desired. For example, extra financial resources could enable family caregivers to pay for respite care or take time off work, which could reduce stress.
Financial support is available for some people caring for older family members through Medicaid. If eligible, they can receive a monthly payment for providing care. Veterans, as well as their spouses, are also often eligible to receive caregiver benefits, but navigating the red tape of government benefits can be difficult. In fact, more than a quarter of caregivers who do not receive help accessing benefits said that is the type of support they need most.
Many older adults with Medicare Advantage plans are eligible for in-home evaluations (IHEs), which will help them identify the resources they need most and connect them with the resources. “Based on the individual needs from these assessments, members can be referred to a health plan’s care management programs, or provided with referrals to helpful community resources in these areas – such as volunteers to provide transportation or Meals on Wheels for delivery of healthy food,” said Dr. Marc Rothman, geriatrician and chief medical officer for Signify Health.
Balancing caregiving with work, childcare, and other life responsibilities can be very challenging, and it’s not unusual for caregivers to experience a decline in their mental health. In fact, our research revealed it’s more common for those who care for an aging family member to experience symptoms of anxiety, depression, and other mental health issues than the general population.
For family caregivers who struggle to maintain their own mental health and balance their needs with those of their loved one, it’s easy to assume you’re on your own. But it’s important to remember that a mentally healthy caregiver can provide better care to their loved one.
Evan Falchuk, CEO of Family-First.com, which provides employer caregiver benefits, understands the importance of finding the balance of caring for self and others. “I always think of what they tell you on an airplane: put on your own oxygen mask before helping others. It’s hard to succeed as a caregiver if you’re not putting your own health and well-being first…I encourage people to look to their family and friends, to find a support group, to seek out mental health counseling. Above all, know that you are not alone – there are a lot of people who care about you and who want to help,” he said.
While many more resources are needed to fully support the growing needs of caregivers, here are a few starting places for those who are looking for more help now:
A service of the U.S. Administration on Aging, the Eldercare Locator lets you type in your ZIP code or city and state and find dozens of organizations that provide support for older Americans and their caregivers, such as their local Area Agency on Aging.
A nonprofit grassroots organization, Caregiver Action Network offers online support tools, chat, and news about family caregiving.
In some cases, family caregivers may be able to get financial support from Medicare/Medicaid via self-directed services. Eligibility depends on the state, and enrollment may be a challenge. But for families that are able to participate, the cost savings could be significant. Those with Medicare Advantage plans are also eligible for additional caregiver benefits.
For family caregivers of U.S. military veterans, many benefits are available. For those who qualify, caregivers can receive education and training, mental health counseling, and financial assistance when traveling with the veteran to receive care. Monthly stipends and respite care are also available.
Whether online or in-person, support groups can provide caregivers with a community of other people who understand their needs and concerns. Groups are typically free to join and are run in a variety of formats. There are also groups that are oriented around conditions like Alzheimer’s or geared toward younger caregivers.
The Senior List conducted an online survey of 1,951 U.S. adults aged 18 or older. 1,431 of participants provided care for a loved one or family member over the age of 65 at the time of our survey. Our research was conducted in spring 2022. Mental health quality was self-reported by participants and was not based on professional evaluation.