Taking Care of Caregivers

By 2030, the number of senior citizens requiring care in the United States is expected to double.¹ And as the Baby Boomer generation enters its golden years, caregivers will be increasingly stretched thin to meet the needs of their care recipients as well as their own.

Caregivers comprise an invisible workforce that provides vital support to a growing number of individuals suffering from physical, psychological, and neurological complications. Usually unpaid, caregivers tend to be family members who care for their relatives out of love or because they cannot afford to hire help. If this work were replaced with paid services, it would cost an estimated $470 billion annually.²

While their work is essential to the health and wellbeing of others, more than half of caregivers say they had no choice in taking on the role.³ The COVID-19 pandemic likely increased this rate, with 55% saying they had not identified as caregivers prior to the pandemic.⁴

Caught off guard and unprepared, many struggle to meet the needs of their care recipient in addition to their jobs, families, and other responsibilities. In extreme cases, caregivers can be so overwhelmed that they abandon their care recipients at hospitals, homeless, putting added strain on health care systems.⁵

Caregiving requires a high degree of personal sacrifice, and it can be physically exhausting and mentally taxing. Because of this, caregivers are at a greater risk for stress and burnout as well as poorer mental and physical health—all things that can compromise their ability to care for others.⁶ For tips on how to prevent burnout, see Sidebar 1.

As a result, 53% of caregivers report a decline in their health. Further, 70% of caregivers grapple with their own mental health issues. About 33% have seriously considered suicide in the last 30 days. In caregivers aged 24 to 43, this rate is closer to 45%.⁷

Caregiver stress and burnout is an overlooked problem that threatens to grow as demand for care outpaces supply. While there are currently about 7 potential family caregivers for every older adult, by 2030, this ratio will drop to about 4 for every senior.⁸

Only 13% of caregivers say anyone has ever inquired about what they need.³ This is a staggering statistic that needs to be addressed. Mental health providers in particular have a unique opportunity and responsibility to help connect caregivers to the support they need. Not only are they extending care to an underserved population, but they are, by extension, improving the care of their own patients.

Who Are Today’s Caregivers?

More than 21% of the US population serve as caregivers to someone suffering from an illness or disability. They are usually spouses, older children, parents, and family friends, but there are others who earn a living as caregivers.

About 72% of caregivers care for their spouse, 21% care for their children, and 7% care for both. Men and women equally share in the responsibility, which is mostly fulfilled by those aged 38 to 64.⁴ In 2020, 24% of caregivers were looking after more than 1 person, up from 18% in 2015.³

Duties include physical assistance with bathing, dressing, using the toilet, walking, ambulating, and more. Caregivers may also manage medications, help pay bills, and provide transportation. They may also advocate on a patient’s behalf and provide emotional support and companionship.

There are 44 million unpaid elder caregivers in the US, and 75% of them work other jobs.⁹ They also reported greater financial stress and challenges in balancing work and family life.⁴ Of those who work, only 53% say their employers know about their additional caregiving responsibilities.³ Close to 70% need to adjust their work schedules to accommodate their caregiving responsibilities. This includes taking time off work, retiring early, quitting, or turning down promotions.⁹ While this can force some to set aside their own ambitions, it can also significantly impact their financial situations. While 41% of caregivers say they experienced no financial strain from caregiving, 18% say they endured high financial strain. Those between 18 and 49 years old experienced the highest strain, likely due to reduced savings, higher debt, and trouble controlling expenses.³

Despite the added responsibility, about 83% of caregivers describe their experience as positive.¹ About 77% say it has strengthened their relationship with the care receiver.¹ For many, caregiving allows them to give back to others, establishes a tradition of care for younger generations, and can even reduce rates of depression and anxiety.¹⁰

How Caregiver Stress Begins

On average, about 70% of individuals over the age of 65 will require some form of long-term care for an average of 3 years. In 2000, seniors comprised just 12% of the US population, but by 2030, they will make up 20%.¹ Most individuals over the age of 40 have done little to plan for their eventual long-term care and do not have a strong grasp of the financial costs involved.¹ While 65% of Americans have discussed and planned their funerals, only 41% have a plan for their long-term care.¹ Instead, a majority of Americans assume family members will step in.¹

Many care recipients and caregivers significantly underestimate the cost of long-term care and do not understand how Medicare coverage works. The average national cost for nursing home care is $6900 a month. Assisted-living facilities cost about $3400, and part-time home care costs $1100 monthly.¹

About 42% of individuals believe Medicare covers ongoing nursing home care, while 38% believe it covers home care by a licensed aide.¹ In reality, Medicare generally pays for stays in skilled-nursing facilities, but only for certain conditions and only for brief periods of time. Covered care is provided by registered, licensed, or vocational nurses, as well as professional therapists. Custodial care, such as bathing, help dressing, eating, and using the bathroom, is not covered by Medicare (Sidebar 2).

It is this lack of preparation that catches many caregivers off guard and unprepared for their roles. Of those who anticipate that a relative or friend will need long-term care, 57% expect it will be someone else who provides it.¹ It is no wonder the caregivers of tomorrow do not feel particularly confident about their ability to provide care.¹

What Causes Caregiver Burnout?

Caregivers run the risk of developing stress and eventual burnout if they can no longer balance their needs with the responsibility of caring for someone else.

The term burnout was coined in 1972 by clinical psychologist Herbert Freudenberger to describe volunteers struggling to meet the excessive demands placed on them.¹¹ Today, burnout is studied across the entire employment spectrum and defined as “a syndrome associated with chronic workplace stress that has not been successfully managed.”¹²

Burnout among caregivers can be expressed in 3 ways: 1) Emotional exhaustion causes a caregiver to feel overloaded and emotionally drained at the thought of providing care to the recipient; 2) depersonalization describes the emotional and psychological detachment a caregiver may develop toward the care recipient; and finally, 3) there is a reduced sense of personal accomplishment.⁶

There are many situations that can lead to caregiver stress and burnout. Just watching a loved one decline and move toward the end stage of life can be a highly stressful and depressing event. Other times, the brunt of caregiving responsibility falls on the shoulders of just 1 person, leading to resentment if other family members are not pitching in. Also, the caregiving experience of patients with mental illness can be perceived differently than those with physical illness.

Caregivers also endure endless logistical challenges, long waits on hold, and bills. Many caregivers struggle with finding affordable services, such as transportation, meal-delivery services, and in-home health care. This is particularly challenging for caregivers who are helping those with long-term physical conditions, emotional or mental health issues, and memory problems, as these individuals require more supervision.³

Other caregivers point to a lack of training that could help lessen their stress. In 1 survey, caregivers identified topics of interest such as keeping the recipient safe, finding suitable activities, managing caregiver stress, and completing paperwork. Other popular topics include making end-of-life decisions, handling personal finances, choosing a care facility, and managing difficult behaviors in recipients.³

Every job has its challenges, and it is natural for caregivers to experience a certain level of frustration and negative emotions from time to time. But left unchecked and unchanged, these feelings can snowball, resulting in prolonged anger, depression, and sadness over what they have had to sacrifice. Guilt, regret, and even grief can follow—or worse, suicidal thoughts and abusive behavior.

Health Effects and Warning Signs

A caregiver’s mental and physical health can be significantly impacted by their work. Only 41% of caregivers in 2020 said their health was excellent or very good, down from 48% in 2015. One in 4 indicated that caregiving has made their health worse. Many caregivers feel lonely, and 36% described their caregiving situation as highly stressful.³

Caregivers in demanding situations, those with no other help, and those living with their care recipients have experienced the greatest decline in health. Hispanic, Asian, and women caregivers, as well as individuals aged 18 to 49 years old, show significant declines.³

Caregivers tend to have higher levels of depression symptoms compared to non-caregivers, with 40% to 70% exhibiting clinically significant symptoms and one-quarter to one-half meeting the criteria for major depression. As a care recipient’s ability to function declines, a caregiver’s feelings of depression and being burdened increase.¹³ Risk factors for caregiver stress and burnout include living with the care recipient, long hours of caregiving, social isolation, depression, a lack of coping skills, financial difficulties, and a lack of choice in being a caregiver.¹⁴

Some caregivers can be good advocates for themselves when accompanying their care recipients during doctor visits. But in deference to the patient, many caregivers may not easily reveal this information. As a result, doctors should keep an eye out for symptoms of caregiver stress (Table).

Helping Caregivers Find Balance

Everyone needs the occasional reminder that they are not alone. Often, caregivers may not even realize the extent of their stress and burnout. Just listening without judgement provides caregivers a valuable outlet to vent their frustrations, anger, guilt, and hopelessness. It does not take much to check in on a caregiver while treating patients.

If it is clear a caregiver needs more help, offer to connect them with a mental health clinician. Often, caregivers just need help accessing the right resources and information. Navigating Medicare, other insurance plans, and the health care system can be daunting, to say the least. Each state, payor, and program are different in what they will and will not cover for caregiver support. Discussing this with caregivers and offering resources can give them clarity (Sidebar 2).

Legislatively, there are national efforts underway to provide more support for caregivers. The Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2018 seeks to establish a national caregiving agenda to improve coordination across various government programs to assist caregivers and recipients. The Credit for Caring Act, introduced earlier this year, would provide families with up to $5000 tax credit to help cover of out-of-pocket caring costs, estimated at $7000 per family.¹⁵ The Family and Medical Insurance Leave Act is another piece of legislation making its way through Congress. It seeks to create an insurance fund to provide workers with a portion of their wages for up to 60 workdays or 12 weeks a year while they seek care for their own health needs or provide care for a family member.

While limited, technology has provided useful benefits to about 53% of caregivers, although it generally depends on their age and comfortability using it. Most use software to help track a recipient’s finances and personal health records. Only 17% use apps, video, or wearable devices to track a recipient’s whereabouts and safety.³

There are still many simple tips providers can give caregivers to gain awareness and control when the stress of their work becomes too much. These include:

Mindfulness: Mindfulness is a state of mind that focuses on the present moment without judgment or distraction. It can help increase concentration and reduce mistakes, support better self-care, and reduce stress and anxiety in both caregivers and recipients.¹⁶ In 1 study, caregivers trained in mindfulness were better able to identify and manage their own levels of psychological stress. As a result, they were less likely to use physical restraints and stat medications with patients, which also resulted in a significant reduction in aggressive behavior.¹⁷

Gratitude: Caring for someone suffering from an illness or disability can stir up some powerful emotions. Making an effort to recognize even the smallest positives may not neutralize these feelings, but it can help keep things in perspective. An easy daily practice could involve quickly jotting down a few things we are grateful for. Not only is it a good release, but they can be referred to and reread during challenging times.

Build Resilience: Resilience is the ability to recover quickly from stressful situations. Like a muscle, it can be strengthened through a mindset that keeps things in perspective, uses humor to diffuse difficult situations, focuses on compassion and positivity, and engages in meaningful activities and the present moment. One study found that caregivers with higher levels of resilience were less cynical and emotionally exhausted and had higher job engagement and professional efficacy.¹⁸

Positive Psychology: Established in 1998 by then-American Psychological Association president Martin Seligman, PhD, positive psychology is the scientific study of what makes life worth living. Its focus on positive emotions, behaviors, and character strengths helps mitigate the effects of burnout among health care providers and caregivers. Ultimately, caregivers must follow the adage of putting on their own oxygen masks before helping others. They need to be encouraged and empowered to ask for help and advocate for their needs. After all, they deserve the same level of care that they give to those they serve.

Dr Herman is chief medical officer of Mindpath Health. Dr Parmar is a psychiatrist with Mindpath Health.

References

1. Long-term care in America: expectations and reality. Associated Press, National Opinion Research Center. Accessed January 20, 2022. https://www.longtermcarepoll.org/report-long-term-care-in-america-expectations-and-reality/

2. RAISE Family Caregiving Advisory Council report to Congress. Administration for Community Living. News release. September 22, 2021. Accessed January 20, 2022. https://acl.gov/news-and-events/announcements/news-release-raise-family-caregiving-advisory-council-report-congress

3. Caregiving in the US. American Association of Retired Persons, National Alliance for Caregiving. May 2020. Accessed January 20, 2022. https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf

4. The impact of caregiving on mental and physical health. Blue Cross Blue Shield. September 9, 2020. Accessed January 20, 2022. https://www.bcbs.com/the-health-of-america/reports/the-impact-of-caregiving-on-mental-and-physical-health?utm_source=STAT+Newsletters&utm_campaign=6468b28e32-MR_COPY_01&utm_medium=email&utm_term=0_8cab1d7961-6468b28e32-152935218

5. Associated Press. People without caregivers end up stranded in hospitals. Modern Healthcare. November 20, 2018. Accessed January 20, 2022. https://www.modernhealthcare.com/article/20181120/NEWS/181129994/people-without-caregivers-end-up-stranded-in-hospitals

6. Gérain P, Zech E. Informal caregiver burnout? Development of a theoretical framework to understand the impact of caregiving. Front Psychol. 2019;10:1748.

7. Archangels data. Accessed January 20, 2022. https://www.archangels.me/insights

8. Caregiving for family and friends — a public health issue. Centers for Disease Control and Prevention. Updated July 30, 2019. Accessed January 20, 2022. https://www.cdc.gov/aging/caregiving/caregiver-brief.html

9. The caregiver experience: a snapshot of the caregiver journey. National Alliance for Caregiving. Accessed January 20, 2022. https://www.caregiving.org/advocacy/working-caring/

10. Beach SR, Schulz R, Yee JL, Jackson S. Negative and positive health effects of caring for a disabled spouse: longitudinal findings from the Caregiver Health Effects Study. Psychol Aging. 2000;15(2):259-271.

11. Reith TP. Burnout in United States healthcare professionals: a narrative review. Cureus. 2018;10(12):e3681.

12. Burn-out an “occupational phenomenon”: International Classification of Diseases. World Health Organization. May 28, 2019. Accessed January 20, 2022. https://www.who.int/news/item/28-05-2019-burn-out-an-occupational-phenomenon-international-classification-of-diseases

13. Caregiver health. Family Caregiver Alliance. Accessed January 20, 2022. https://www.caregiver.org/resource/caregiver-health/

14. Caregiver stress: tips for taking care of yourself. Mayo Clinic. December 16, 2020. January 20, 2022. https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784

15. Kerr N. Credit for Caring Act would provide tax credit to family caregivers. Updated July 21, 2021. Accessed January 20, 2022. https://www.aarp.org/caregiving/financial-legal/info-2021/new-credit-for-caring-act.html

16. Stoll N. Three ways mindfulness can help caregivers. Caregiving Across Generations. March 26, 2021. Accessed January 20, 2022. https://caringacross.org/blog/blog-mindfulness-helps-caregivers/

17. Singh NN, Lancioni GE, Karazsia BT, et al. Effectiveness of caregiver training in mindfulness-based positive behavior support (MBPBS) vs. training-as-usual (TAU): a randomized controlled trial. Front Psychol. 2016;7:1549.

18. Menezes de Lucena Carvalho VA, Fernández Calvo B, Hernández Martín L, et al. [Resilience and the burnout-engagement model in formal caregivers of the elderly]. Psicothema. 2006;18(4):791-796.