Unprecedented Caregiver Fatigue in America — Do You Suffer from Caregiver Burnout?

Q. This past year, my mother, who has dementia, moved into our house, and I became her caregiver. I also work full-time from home and have two children of my own. Recently, I am feeling very anxious and stressed out, like I’m going to crack. I’m thinking I could be on the verge of burnout, if it hasn’t happened already. How do I know if I’m truly experiencing caregiver burnout, and what can I do to make these feelings subside and to ease the stress a bit? Thanks for your help!

A. Last week, we celebrated National Caregiver Day, a day of recognition for those who selflessly provide care for others. Many of us who assume caregiver roles feel stretched too thin, assuming roles as employees as well as caregivers to loved ones, children, and spouses. Burnout is a state of emotional exhaustion that results from feeling drained due to too many demands on one’s energy, strength, or resources. These feelings can often result from simply having too much on your plate, and that sounds exactly like what you are experiencing. Don’t despair — you are certainly not alone, and there are things you can do to help alleviate the stress.

A recent Seniorly study examining the state of caregiver burnout in America shows that a record 53 million Americans are fatigued after providing $600 billion in unpaid family caregiving. According to the study, 42 million Americans are serving as caregivers for an aging parent, spouse, or someone who struggles to complete daily life activities. That figure has grown by nearly 25 percent over the past half-decade as baby boomers continue to age.

These are a few key findings from the study:

• One in six adults care for adult relatives 50 and older who have illnesses or disabilities.
• Parents account for the biggest group when it comes to the caregiver’s relationship to the recipient, with about 50 percent of people who provide care to an adult doing so for a parent (or parent-in-law). Spouses are the next biggest group at 12 percent.
• About 40 percent of those receiving care live in the home of their caregiver, and the nation in general has seen a slight increase in the number of multigenerational households over the past decade, according to the US Census Bureau.
• Women are more likely than men to provide care to family members or other loved ones, accounting for 61 percent of caregivers, and female caregivers are more likely to be providing care for more than one person (27 percent vs. 20 percent for male caregivers). An estimated 35 percent of these women caregivers have children under six years old.
• Out-of-pocket costs for caregivers are on average 26 percent of household income.
• The average caregiver spends $7,242 out of pocket annually and spends nearly five hours per day providing elder care. This is over $63,000 per year worth of care in the Northern Virginia, DC Metro area if you had to pay privately, with rates averaging around $35 per hour for home health care.
• Family caregivers are also more likely than not to be employed in a job other than caregiving, and 60 percent of employed family caregivers work full-time. And at a time when the economy is struggling and two incomes are needed, 75 percent of women caregivers aged 45-54 are also working outside the home.
• The amount of energy needed for caregiving forces many women to cut back on hours, which hurts their career trajectory and earnings. In fact, the Department of Labor says unpaid family caregiving reduces a woman’s lifetime earnings by 15 percent.
• Among family caregivers whose relatives do not live in a nursing home or assisted living facility, only about 31 percent have any paid help with caregiving. One major reason for that is that paid care services tend to be expensive and not covered by Medicare or private health insurance.
• With the population of Americans 65 and older expecting to grow by almost 50 percent between now and 2040, the state of caregiving in the US is likely to get more daunting.

Seniorly also looked at mental distress and chronic health issues of caregivers, and the financial, physical, and mental health toll placed on family caregivers cannot be understated.

Something Has to Give

Twenty-three percent of all caregivers say their health has worsened, and the Centers for Disease Control and Prevention found that during the COVID-19 pandemic, 85 percent of caregivers experienced at least one symptom of poor mental health, while 50 percent reported serious suicidal ideation.

In addition to the average 24 hours per week spent on various care-related tasks, Caregivers also handle tasks that do not directly relate to personal care, including managing finances (58 percent), housework (76 percent), and transportation (80 percent).

All these responsibilities, along with caregiving tasks, can really take a toll. In fact, over the past six years, the percentage of family caregivers who say their own health status is fair or poor nearly doubled, going from 12 percent to 21 percent, and 23 percent of caregivers say their efforts to provide care for their loved ones has come at the expense of their own health.

Are You Experiencing Burnout? Take This Online Test

Even in the best of times, caring for an aging loved one can be incredibly stressful. But, how do you know if what you are feeling is burnout, when burnout symptoms often coincide with those of stress and depression? Norwegian researchers have devised a new tool that offers a measure of burnout, incorporating both core and secondary symptoms. Beyond just exhaustion, it considers aspects such as mental distance and cognitive and emotional impairment. The test looks at the following symptoms of burnout:

– Exhaustion: Described as a severe loss of energy manifesting both physically and mentally. Specific symptoms include feeling drained, inability to relax after work, and feeling physically weak.

– Emotional Impairment: Characterized by intense emotional reactions and feelings of being overwhelmed. Symptoms include irritability, frustration, and feeling unable to control one’s emotions at work.

– Cognitive Impairment: Indicated by problems with memory, attention, concentration, and overall cognitive performance. This includes difficulty thinking clearly, forgetfulness, and being easily distracted.

– Mental Distance: A psychological distancing from work, marked by a reluctance or aversion to work, cynicism, and a lack of enthusiasm.

– Psychological Distress: Non-physical symptoms resulting from psychological problems, such as sleep issues, tension, anxiety, and disturbances caused by noise and crowds.

– Psychosomatic Complaints: Physical complaints not explained by physical disorders but linked to psychological problems, such as headaches, muscle pain, and frequent sickness.

– Depressed Mood: Feelings of sadness, inability to experience pleasure, feelings of powerlessness, and disappointment in oneself.

The test was devised as a way of catching the symptoms of burnout early. You can take the free online test here.

Tips to prevent or manage caregiver burnout

If you find that you are experiencing caregiver burnout, here are a few tips to help you manage the challenge:

• Seek support: Reach out to family members, friends, or support groups who can offer assistance, guidance, and understanding. Consider hiring professional caregivers or respite services to give yourself regular breaks and time for self-care.
• Prioritize self-care: You won’t be of any use to your loved one if you fall apart physically or mentally. This is why caring for yourself is crucial in preventing burnout. Make sure to prioritize your own physical and emotional well-being. Get enough sleep, eat nutritious meals, exercise regularly, and engage in activities that you enjoy and help you relax. Remember, taking care of yourself allows you to better care for others.
• Don’t shoulder all responsibilities alone: Delegate tasks to family members or friends, or consider hiring professional help if finances allow. If you have had offers of help from people in your circle, determine what tasks they would be up for doing and assign them the job. Laundry, grocery shopping, cooking, or rides can all be spread around to willing helpers.
• Use resources: Research and utilize resources tailored for caregivers such as respite care services, adult day programs, caregiver training programs, and assistive technologies.
• Keep organized: It’s likely you’ll need to speak with doctors and other care providers on behalf of your loved one. Ensure that you have all the documents you need in place, including an Advance Medical Directive and a Financial Power of Attorney. Write down the medications your loved one takes and document any procedures they undergo.
• Communicate openly: Encourage honest discussions within the family about the challenges faced, helping everyone understand your role and responsibilities, and how they might contribute to lighten the burden.
• Build a community with other caregivers: We know that millions of Americans are providing unpaid care services for loved ones. That means you are far from alone, and other caregivers are an important resource for helping you adjust and receive support.
• Take advantage of technology: There are smart home devices that can make it simpler (and less invasive) to keep an eye on senior loved ones and keep them safer at home. Moreover, services like Uber Eats, Door Dash, and other delivery services can take important errands off your hands and put time back in your schedule. There are also apps specifically designed to help caregivers keep track of tasks and important information
• Reach out if you need help: If you’re experiencing caregiver burnout and need immediate assistance or professional guidance, it’s important to reach out to the appropriate authorities or organizations for support. Here are some key contacts you can consider:
  • National Alliance for Caregiving (NAC): The NAC is a nonprofit organization dedicated to supporting caregivers. You can visit their website at caregiving.org.
  • Caregiver Action Network (CAN): CAN is an organization that provides education, support, and resources for family caregivers. They offer a helpline, support groups, and an online community. You can contact them at 1-855-227-3640 or visit their website at caregiveraction.org.
  • Eldercare Locator: The Eldercare Locator is a public service of the US Administration on Aging. They can help connect you with local resources and support services for caregivers. You can contact them at 1-800-677-1116 or visit their website at https://eldercare.acl.gov.

For more caregiver tips and information, please see my other caregiver articles.

Are You a Family Caregiver?

If you are a caregiver for a loved one, it is wise to plan in advance for yourself and your loved one, especially with the catastrophic costs of long-term care. At the Farr Law Firm, we assist our clients with Life Care Planning and Medicaid Asset Protection, the process of protecting your assets from having to be completely spent down paying privately for long-term care, whether at home, in an assisted living facility, or in a nursing home. We help our clients ensure that their loved ones get the best possible care and maintain the highest possible quality of life. Please call us whenever you are ready to make an appointment for an initial consultation:

Elder Care Fairfax: 703-691-1888
Elder Care Fredericksburg: 540-479-1435
Elder Care Rockville: 301-519-8041
Elder Care DC: 202-587-2797