Taking Care of Caregivers

Tending to the health needs of another requires a high degree of personal sacrifice that can lead to burnout. In this Psychiatric Times article, Mindpath Health’s Elise Herman, MD, and Rashmi Parmar, MD, provide tips to avoid mental and physical exhaustion.

By 2030, the number of senior citizens requiring care in the United States is expected to double. 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.

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.

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.

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%.

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. In 2020, 24% of caregivers were looking after more than one person, up from 18% in 2015.

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.

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%. 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. While 65% of Americans have discussed and planned their funerals, only 41% have a plan for their long-term care. Instead, a majority of Americans assume family members will step in.

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 $3,400, and part-time home care costs $1,100 monthly.

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.

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 one 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.

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.

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.

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 judgment provides caregivers with 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.

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.

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.

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.

Positive Psychology: It focuses on positive emotions, behaviors, and character strengths and 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.