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.
Respondent Breakdown by Care Recipient
| Answer Choices | Responses |
|---|---|
| Spouse | 29.01% |
| Parent | 34.74% |
| Sibling | 3.04% |
| Child | 12.48% |
| Other (please specify) | 20.74% |
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.
Respondent Breakdown by Gender
| Answer Choices | Responses |
|---|---|
| Female | 70.83% |
| Male | 25.13% |
| Non-binary/Gender non-conforming | 0.51% |
| Prefer not to specify | 3.2% |
| Prefer to specify | 0.34% |
Respondent Breakdown by Age
| Answer Choices | Responses |
|---|---|
| 18-34 years old | 4.72% |
| 35-54 years old | 24.45% |
| 55-74 years old | 53.79% |
| 75 years or older | 13.83% |
| Prefer not to specify | 3.2% |
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.
Hours Spent on Caregiving-related Activities
| Answer Choices | Responses |
|---|---|
| 1-5 hours | 12.48% |
| 5-10 hours | 11.97% |
| 10-20 hours | 14.33% |
| More than 20 hours | 61.21% |
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.
Leisure Activities Impacted by Caregiving Responsibilities
| Answer Choices | Responses |
|---|---|
| Yes, I've given up or cut back on the amount of time spent on hobbies, activities, or other interests as a result of becoming a caregiver. | 84.65% |
| I've had no change to my hobbies, activities, or other interests since becoming a caregiver. | 15.35% |
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.
Caregivers Experience Changes to Personal Relationships
| Answer Choices | Responses |
|---|---|
| Yes, I have grown less patient with others. | 15.51% |
| Yes, my communication with others has suffered. | 25.97% |
| Yes, I have less time to spend with others. | 58.01% |
| Yes, but for a reason not listed here. | 10.96% |
| No, my relationships with others have not changed as a result of caregiving. | 29.68% |
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.
“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:
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.
Respondent Breakdown by Employment
| Answer Choices | Responses |
|---|---|
| Working | 46% |
| Not Working | 54% |
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.
Caregivers Careers Are Impacted By Caregiving Obligations
| Answer Choices | Responses |
|---|---|
| I have not missed work as a result of caregiving | 30% |
| Yes, I've missed work as a result of caregiving | 70% |
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%).
Changing Jobs is Common Amongst Caregivers
| Answer Choices | Responses |
|---|---|
| Yes, I needed more flexibility in my schedule. | 29.01% |
| Yes, I needed higher income. | 2.53% |
| Yes, I had to relocate | 4.38% |
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.
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:
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.
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%).
Changing Jobs is Common Amongst Caregivers
| Answer Choices | Responses |
|---|---|
| I prioritize my own health over the health of my family member(s). | 3.37% |
| I sometimes prioritize caregiving for my family member(s) over myself. | 29.34% |
| I often neglect my own care to care for my family member(s). | 38.45% |
| I've experienced no changes to my own care since becoming a caregiver. | 28.84% |
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%.
Caregivers Exercise Less Due to Physical and Mental Toll of Responsibilities
| Answer Choices | Responses |
|---|---|
| Lack of time | 43.17% |
| Lack of motivation | 33.22% |
| Lack of energy | 45.19% |
| Quarantining has prevented me from exercising | 14.5% |
| Other (Please specify) | 5.23% |
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.
Caregiving Overwhelmingly Impacts Sleep
| Answer Choices | Responses |
|---|---|
| Nightly | 46.36% |
| 2-3 times a week | 38.81% |
| 4-5 times a week | 14.82% |
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.
"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):
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.
Caregivers Experience Feelings of Depression
| Answer Choices | Responses |
|---|---|
| I feel depressed | 63.74% |
| I do not feel depressed at all | 36.26% |
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.
The Impact of COVID-19 on Caregiving
| Answer Choices | Responses |
|---|---|
| Quarantining with my care recipient has increased my stress levels. | 55.9% |
| Quarantining with my care recipient has decreased my stress levels. | 4.72% |
| Quarantining with my care recipient has had no effect on my stress levels. | 39.39% |
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.
Caregivers Are Stressed About the Future
| Answer Choices | Responses |
|---|---|
| I'm worried about finances. | 37.94% |
| I'm concerned for my mental health. | 29.85% |
| I'm concerned about my physical health. | 39.8% |
| I'm worried about straining my relationships. | 23.27% |
| I'm worried about the wellbeing of my care recipient. | 53.46% |
| No. | 21.75% |
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
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
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:
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.
“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.
