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The Unspoken Costs of Caregiving

Introduction

In the United States alone there are approximately 53 million independent unpaid family caregivers— making up 20% of the national population (AARP). Caregiving for a loved one is a selfless act, yet comes with life-altering responsibilities. This population faces countless challenges, many of which are experienced behind the closed doors of family homes. To further understand the hardships and sacrifices caregivers face, and to better address their needs, Carewell surveyed our caregiver community about the lifestyle changes they experience.

In an online survey conducted between October 14, 2020 and October 23, 2020, 593 independent family caregivers answered a series of questions to identify the hidden costs of caregiving: evaluating the impact on employment, finances, mental and physical health, as well as personal relationships. This report provides a glimpse into the daily struggles caregivers face, and sheds light on the difference of experiences dependent on age, gender, and care recipient. Furthermore, this report highlights how the COVID-19 pandemic has exacerbated the daily challenges caregivers face.

Demographically-speaking, the majority of our caregiver respondents were female (71%), followed by male (25%) and non-binary (.5%) respondents [3% of respondents chose not to specify]. More than half of our respondents were between 55-74 years old (54%) and nearly a quarter were between 35-54 (24%). Across respondents, 35% reported their care recipients to be parents, followed by a spouse (29%) or child (12%). Our race and/or ethnicity breakdown for respondents was White (77%), Black (9%), Hispanic or Latinx (6%), Asian or Pacific Islander (4%), and Native American or American Indian (2%). Only 1% of respondents chose “Other,” and 5% preferred not to specify.

 

Caregiving in Context

In the last decade, Americans aged 65+ have grown by over a third, and by 2030, 60 million people in the United States will be baby boomers. As this population grows, it will require a significant amount of elder care and support, increasing the need for family caregivers. Oftentimes, caregivers have little-to-no training or preparedness for the job and are typically overwhelmed by the stress and responsibility of caregiving. In a short period of time, they’re expected to learn complex nursing tasks, become well-versed on medical products and services, and quickly adapt to an immense lifestyle change.

Moreover, the coronavirus pandemic has exacerbated the need for in-home caregivers. Unfortunately, nursing homes have been linked to 38% of COVID-19 deaths (New York Times). This has led to a decrease in confidence in these facilities: home health aide employment has grown by 300% as families increasingly choose to keep their loved ones at home (Cognizant). Not only is COVID-19 affecting professional caregivers, but for families who don’t have the resources to work with an agency, it’s causing an influx of novice family caregivers forced to further alter their life in the middle of an already difficult and unprecedented pandemic.

For caregivers, the crisis has introduced new health-related anxieties, buckled traditional healthcare systems, and bowled over daily routines. Throughout this report, observations on caregivers’ experiences, as they relate to the COVID-19 pandemic, will be analyzed.

Key Findings

  • Caregiving weighs heavily on caregivers’ minds. Overall, 64% of respondents reported feeling depressed due to the stresses of caregiving, including 68% of caregivers aged 18-34 and 72% of women who cared for parents.
  • Caregiving leaves little time for recreation. The majority of respondents (85%) reported cutting back on or giving up hobbies, activities, or other interests as a result of becoming a caregiver. About 70% of caregivers also report changes to relationships with loved ones and friends as a result of caregiving.
  • Caregivers put the health of their care recipient before their own. Over 40% of our respondents reported that when feeling ill, they avoid seeking care due to caregiving obligations.
  • No rest for the weary. While spending hours a week balancing careers, caregiving, and other responsibilities, 63% of respondents stated that caregiving interrupts their sleep, with nearly 29% reporting the interruption is nightly, and 24% reporting interruptions 2-3 times a week.
  • Caregiving might be a thankless job, but caregivers feel valued. Despite the difficulties of caregiving, 86% of respondents feel appreciated by their care recipient.
  • Caregiving is a 24-hour job, leaving no room for work-life balance. More than half of respondents reported that caregiving is their full-time job (54%). For those also working outside the home, 70% report missing work as a result of caregiving and nearly a quarter (22%) miss more than 20 work days a year.
 
 

Caregivers Operate in Isolation

Caregiving is a lonely role, as it leaves little room for leisurely activity: caregivers spend nearly as much time, if not more, on caregiving as they would a part-time job. Over 60% of respondents reported spending more than 20 hours a week on caregiving responsibilities. The immense amount of time spent caregiving signals the magnitude of the job and how difficult juggling caregiving duties, career, and other responsibilities is. This balancing act is even more difficult for women, where 65% report spending 20+ hours a week on caregiving duties.

 

The most time-consuming responsibilities caregivers report include performing “personal care” duties (bathing, grooming, exercise, toileting), followed by “housekeeping” (preparing meals, shopping, cleaning, laundry), and “overseeing general health” (medication and prescription usage, appointment reminders).

As a result of dedicating hours of their life to caregiving obligations, the majority of caregivers (85%) reported cutting back on or giving up hobbies, activities, or other interests as a result of becoming a caregiver. Slightly more women (89%) cut back on or gave up activities than men (80%), drawing attention to the larger impacts of caregiving on female caregivers compared to male caregivers. Notably, of the women who cut back on or gave up hobbies, 41% also reported caring for a parent.

 

A support system is crucial for caregivers. However, relationships are impacted by caregiving duties as well—further isolating caregivers. About 70% of respondents reported changes to relationships with loved ones and friends as a result of caregiving. For respondents aged 55-74, this percentage increases to 74%, and even higher for female respondents caring for a parent, at 81%—two of our largest respondent groups.

 

Taking a deeper look at the data, the majority of respondents reported that they have less time to spend with others (58%), while others stated their communication has suffered (26%) or they’ve grown less patient with others (16%), demonstrating the impact of caregiving on personal relationships and mental health.

Spotlight

“There were days I would think, ‘I’m so alone. I’m so isolated’,” explained former millennial caregiver, Melissa “Missi” Rossi. Missi was unexpectedly appointed a caregiver to her father just as she was entering graduate school. Needing an income to support herself and her studies, Missi took on five freelance jobs, severely limiting her social interactions. After the passing of her father, Missi realized the importance of building a community in these times, and now shares her story to help others who are struggling.

No one person should have to handle the burden of caregiving on their own, but during this unprecedented time of isolation, many people are doing just that. Instead of trying to do it all by oneself, caregivers can get creative by involving friends and family:

  • Host a virtual gathering. Call on your loved ones and ask them to help provide virtual entertainment and emotional support to your care recipient. As conversations around the coronavirus pandemic can be stressful, avoid discussing this topic—instead focus on the positive.
  • Invite the children. Involve young family members in virtual bonding by having them read a story, sing a song, or share an art piece they’ve created for their grandparent or other loved one.
  • Split responsibilities. Delegate tasks such as meal delivery, grocery orders, and bill paying to siblings and friends—caregiving takes a village, and many people have a lot of extra time on their hands right now.
  • Start a research party. If you're new to caregiving, you'll quickly realize there are endless processes, nuances, and tips to learn. Instead of spending hours online researching the merits of different products or resources, divvy up the research: ask friends to devote 30 minutes to a specific research task, so you can quickly build a master document of tips to better take care of your loved one.

There is No “Work-life Balance” for Caregivers

Most caregivers report that they don’t work outside of caregiving, making this occupation their full-time job (54%). For caregivers located in the Southeast region of the U.S., this number increases to 60%. There are a variety of reasons why caregivers may not work outside the home, including: retirement (the majority of our respondents are aged 55-74), health reasons, household structure (e.g. one family member works while another supports the care recipient), or caregiving obligations.

 

Due to the overwhelming responsibility of caregiving, for those who are working outside the home, 70% report missing work, with nearly a quarter (22%) missing more than 20 work days. Caregiving can be an unpredictable and preoccupying job, causing caregivers to neglect work responsibilities in favor of their care recipient. When comparing the impact of caregiving on work for male and female respondents, 70% of women reported missing work, while the number dropped to 62% for men—an example of gender disparities present in caregiving. As the majority of caregivers are women, this statistic reflects the impact of caregiving specifically on women in the workforce, highlighting the need for more support to this population.

 

In order to balance caregiving responsibilities with work, about one-third (33%) of our caregivers have changed their career or job as a result of caregiving.

As discussed in this report, acting as a caregiver is an unpaid and often full-time responsibility that benefits from flexible work schedules, so it’s unsurprising to learn the top reason provided by caregivers needing to change their jobs or careers was schedule flexibility (91%), followed by higher income (10%) and relocation (8.26%).

 

Understanding that most caregivers do not have a paid full-time or part-time position outside the home, it’s notable that 36% of caregivers reported spending $1000-$5000 on caregiving yearly, while 15.5% stated they spend over $10,000.

Going Deeper: How Caregivers Can Master the Financial Balancing Act

For caregivers, maintaining a steady income or budget is just one more responsibility placed on their shoulders—and it’s even more difficult if they’re managing a care recipient’s finances on top of their own. To make this process as easy as possible, caregivers should consider these steps:

  • Look at everyday expenses. Which recurring bills and subscriptions do you have? How much are you spending on food, personal care, leisure, and transportation a month? Do you have a mortgage or pay rent? Creating a budget for these expenses can help establish how much you can afford to spend each month, and where to make adjustments if need be.
  • Speak with family. Caregiving expenses add up. And for those not working or working outside the home part-time, money can be tight. If there are siblings, spouses, or other family members in the picture, ask if sharing expenses is an option.
  • Emergency funds and retirement. Once you’ve covered the basics, take time to look into future expenses. What are your retirement goals and how much will it cost? In addition to essential retirement planning, set aside extra cash in the event of an emergency.

For caregivers working outside the home, balancing career and caregiving can be extremely difficult, but there are steps you can take to maintain a level head.

  • Keep a calendar. To stay on top of important work meetings, doctor’s appointments and other milestones, develop a calendar to see all events in one place. If other friends or family members are involved, make it public so all parties can track activities.
  • Stay focused. It’s easy to think about what we’re not doing in the moment. Try to separate work and caregiving to allow you to focus on the task at hand. Handle caregiving obligations before or after work or try to schedule doctor’s appointments during lunch breaks.
  • Plan for emergencies. Emergencies tend to pop up with no advanced notice, so it’s best to get ahead. If you’re trapped at work and can’t be there for your care recipient, have a back up plan in place. Who can jump in and tend to your care recipient? If you have to leave work, appoint a colleague to jump into your role in your absence.
  • Ask HR. Find out if your company has an employee assistance program (EAP) you can use for counseling and other support programs. You may qualify for benefits under the Family and Medical Leave Act, which provides up to 12 weeks of unpaid leave to care for a family member. And in states like California, working caregivers can receive up to 55% of their wages for six weeks of leave per year.

Caregivers Forfeit Their Own Well-being in Favor of Their Care Recipients

Putting the well-being of others ahead of their own is a common trait among caregivers. Overall, 68% of respondents reported that they either prioritize their family members’ care over their own or neglect their own care to care for family members. For caregivers living in the Midwest, this percentage jumps 6% (74%).

 

When feeling ill, 42% of our caregivers reported they avoid seeking care due to caregiving obligations. This number increases 10% for caregivers who identify as Asian / Pacific Islander (52%), and even more so for Native American or American Indian identifying respondents (56%). This paints a picture of altruism in caregivers and spotlights even more concern over their own mental and physical health.

Over 40% of respondents stated that when feeling ill, they avoid seeking care due to caregiving obligations

With caregiving duties largely impacting recreational activities and personal time, 74% of caregivers reported exercising less since becoming a caregiver, with lack of energy and lack of time being the biggest reasons. For respondents caring for a spouse, this number jumps to 78%.

 

Knowing that finding the energy and time to exercise is difficult for caregivers, it’s expected that this population might gain weight. 32% of caregivers reported they’ve gained weight since becoming a caregiver, jumping to 36% for women, and 42% for women specifically caring for a parent. Overall, women, especially women caring for a parent, have significantly higher challenges than other caregiver groups.

When asked about the effects of caregiving on one’s sleep, 63% of respondents stated that caregiving interrupts their sleep, with nearly 29% reporting the interruption is nightly and 24% reporting 2-3 times a week. In the Western region of the U.S., 69% of caregivers reported sleep interruption, with 36% reporting the interruption is nightly. Lack of sleep has major impacts on one's mental and physical health—affecting energy levels, motivation, mood, cognitive and physical ability, and much more.

 

When caregivers were asked to rank their energy levels on a scale of 1-4, the average response was 2.37, with women reporting 2 as their average energy level and men reporting an average of 3.

Caregiver Spotlight

"Despite its many rewards, including sharing love and developing inner strengths, caregiving can be overwhelming. When caregivers expecting to do this work for the short term find themselves in it for the long haul, self-care is often left out of the equation,” says Beth Witrogen McLeod, a caregiver to both of her parents.

Caregivers' instincts are to put the well-being of care recipients ahead of their own, but it’s essential that caregivers take care of themselves first. If you’re feeling emotions of guilt, anger, or resentment, you might be taking on too much. Geriatric social worker Suzanne Alexander recommends a few preventative measures that can have positive impact on caregivers’ well-being (Carewell):

  • Divide and conquer. It’s important to take a step back and assess what your loved one’s needs are today and in the future. Write down everything you need to accomplish and prioritize tasks by what you can do. For what you can’t get done, delegate responsibilities to family or friends.
  • Ask for help. "The American character is 'I can do it by myself.' If people offer help, let them do so. Offer specific things they can do, whether it's vacuuming, cooking, or watching your loved one so you can have some time to yourself."
  • Call in the reinforcements. If, in addition to practical help, you find yourself in need of human contact, invite two friends or relatives over at the same time.
  • Just say no. Set reasonable expectations, and don't try to be all things to all people. Learn to say "no" in cases where you used to say "yes."
  • Get up and move. Physical health is crucial for your body and your mind. If a gym membership isn’t in the budget, look for free activities you already enjoy, like hiking, dancing, or biking. Not sure where to begin? Start with something simple, like taking a walk around your neighborhood.

Caregivers’ Mental Health Wanes as Duties Climb

Overall, 64% of caregivers reported feeling depressed due to the stresses of caregiving, with this number jumping to 68% for caregivers aged 18-34 and 67% for respondents aged 55-74. Additionally, 72% of female respondents caring for a parent reported feeling depressed due to the stresses of caregiving. Things like feeling isolated, losing sleep, and not getting enough physical activity or leisure time can have major effects on mood. When you’re the primary caregiver to a loved one going through a difficult time themselves, it’s crucial to have ample headspace for all parties involved.

 
72% of female respondents caring for a parent reported feeling depressed due to the stresses of caregiving.

The coronavirus pandemic has significantly altered the day-to-day interaction and lifestyle between caregivers and their care recipients. Of those quarantining with their care recipient, 56% reported increased stress levels, with this number jumping nearly 6% for caregivers living in the Southwest region of the United States (62%). It’s no secret that COVID-19 has left Americans feeling stressed and anxious, but for caregivers this can impact not just their health, but the health of their care recipient.

 

When asked if caregiving causes respondents to feel stressed about their future, 78% reported that it does. Of these respondents, the leading reason is being worried about the well-being of their care recipient, followed by concerns for their own physical health as a caregiver. For women, this jumps to 81%. Considering how isolated and overwhelmed caregivers feel (with little time for building a community or planning for the future), this finding sheds light on why caregivers feel stressed about the future.

 
Respondents aged 55-74 were the most stressed (83%), with their primary reason being the well-being of their care recipient, followed by their physical health

Going Deeper: Mental Health Tips for Caregivers

Family caregivers have a much higher than normal risk of anger, depression, and substance abuse, so it’s critical to find interests that are healthy and enjoyable while you’re confined to your house. Take a look at the below activities for ways you can temporarily get out of your head:

  • Take a screen break. Constantly watching the news, scanning social media, or double-checking your email doesn’t give your mind the much-needed break it deserves. Find activities that allow you to relax without staring at a screen.
  • Deep breaths. Throughout the day, take a moment to breath and stretch. Check out a few quick exercises here.
  • Watch what you eat. Remember to feed yourself, but also be mindful of what you’re putting into your body. Eating a well-balanced meal will provide you with the energy (mentally and physically) to get through your caregiving obligations.
  • Rest. Rest. Rest. Again, sleep is imperative to your cognitive and physical ability. If you’re having difficulty falling asleep, try avoiding screen time 30 minutes before bed (opt for a book instead), cooling down your body temperature with a shower, or investing in a new pillow or mattress.
  • Take a virtual field trip. If you’re feeling stuck at home, look into what virtual events your local community centers or museums are offering. You can also check out this list of virtual tours from Google Arts & Culture.

It’s Worth It in the End: Despite the Difficulties of Caregiving, Caregivers Feel Appreciated

At the end of the day, caregiving takes a massive toll on the well-being of caregivers in almost all aspects of life. However, the role comes with a high sense of gratitude from both caregiver and care recipient. 86% of respondents reported that they feel appreciated by their care recipient, with similar sentiments observed between men and women.

Caregiver Spotlight

“I spend all my days planning for what could go wrong, but always keeping things in perspective and only focusing on what I can control. Ultimately, I'm going to lose this battle. But she's the love of my life and, even if I knew this is how our incredible journey would end, I'd go back and do it all over again,” explains Bruce Bower, a retired Navy pilot and caregiver to his wife.

Bruce began caring for his wife, CJ, when she was diagnosed with Alzheimer’s Disease in 2011. Prior to the pandemic, the couple relied heavily on the support of cruises; long-distance cruising provided cooked meals, clean rooms, socialization (which is crucial for those with Alzheimer’s Disease) and an activity for the couple to experience together and bond over. Over time, CJ’s condition regressed and Bruce began providing more personal care to his wife. Despite the difficult physical and mental hardships Bruce experiences as an independent, unpaid caregiver, he feels extremely grateful to have this time with his wife.

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