You Don’t Have to Go In Alone – Family Caregiver Burnout

Two out of five Americans over the age of 65 experience social isolation and loneliness. The need and demand for home care services has grown tremendously, as scientific research show there is a correlation between loneliness and chronic illnesses such as dementia, depression, and risk of stroke (CDC, 2020). Recently, Covid-19 has further exacerbated the negative impact of social isolation within an already vulnerable group.

Hiding in the shadow of these statistics are everyday heroes, the primary caregivers who care for our aging population. These unsung heroes also experience social isolation as they attempt to care for their loved ones on their own.

Who are our Primary Caregivers?

Today, approximately one in five Americans are primary caregivers, representing a 53 million Americans; an incredible 20% jump from the 43 million adult caregivers in 2015 (AARP, 2020). The routine tasks that caregivers are associated with include preparing meals, running errands, giving emotional company, and other seemingly “routine” tasks that may seem trivial if not for the emotional weight pulling down on these willing caretakers.

Hero Senior Care Services provides respite care to families struggling with senior care. We organized a focus group with people who identify themselves as primary caregivers to get more insights into the emotional roller coaster of their responsibility. One of the participants was Susan Brown, who has been taking care of her parents for several years. This is what she had to say:

Susan Brown:

“Being a primary caregiver is an experience that brings a lot of pressure and stress, there are weeks when you can feel trapped on a day-by-day basis.”

A 2020 report presented by the AARP and the National Alliance for Caregiving (NAC) found that in the US:

  • 24% of adults care for more than one person, up from 18% in 2015.
  • 26% of adults care for someone with dementia or Alzheimer, up from 22% in 2015.
  • 26% of caregivers express difficulty in coordinating their care responsibilities, up from 19% in 2015

This last statistic gives a hint into the challenges faced by the community, and the importance of tackling these “difficulties” before they escalate.

Caregiver Burnout

According to the same 2020 report, more than one-third of familial caregivers describe their responsibilities as “highly stressful”, and 23% believed caregiving negatively impacted their health – compared to 17% in 2015.

Susan Brown:

“It is important to be organized. For example, you can’t just go on vacation at any given time because you need to find someone to care for your family member. In my case, my father, who is 74 and lives with us, always needs someone by his side for safety reasons. For me it was important to find someone trustworthy and caring, which can sometimes be time consuming, but ultimately worth it for our peace of mind.”

On the emotional side, it is common to see caregivers invest their energy and attention towards this role at the expense of the other areas of their life such as social relationships, education, or career. The neglect of personal development and social relationships creates a downward spiral towards the same problems they try to mitigate for their senior relatives.

On the financial side, more than 50% of primary caregivers that have a career say that they often arrive late, leave early, or are forced to take time off work to accommodate the demands of caregiving. This financial burden can often translate to job loss, which in 2019 led over 17% of familial caregivers to quit their jobs to provide help for their family members. (AARP, 2020)

Over time, this downward spiral leads to caregiver burnout, which is the term used to describe the condition of exhaustion, depression, anxiety, and purposelessness that millions of caregivers fall into. The top indicators to identify caregiver burnout, according to the Alzheimer’s Association, are (ALZ, 2020):

  • Anger or frustration toward the primary care-receiver
  • Anxiety
  • Depression
  • Exhaustion
  • Inability to concentrate and memory loss
  • Sleeplessness
  • Social withdrawal

The potential impact of caregiver burnout then circles back to their primary care receivers, since all these psychological and health risks cause familial caregivers to mismanage medication, forget appointments, or lead to unhealthy behaviors such as smoking and drinking that affect the entire family nucleus.

The long-term effects must be highlighted. The American Psychological Association found that caregivers between the ages of 55-75 have higher rates of high blood pressure, making them more susceptible to cardiac conditions, as well as 15% lower level of immune response which makes them more susceptible to diseases.

Susan Brown:

“But I also feel so grateful and honored being able to help. I understand getting older is both mentally and physically stressful for them. Being a primary caregiver is an opportunity to say thank you for all they did when I was growing up. Perspective is a very strong tool for primary caregivers. I know I won’t be happy when I can’t do certain things anymore, and by maintaining that empathy it helps me through the difficult days.”

SOS for the Caregiver

Despite these apparent challenges and risks, why is it that only 14% of family caregivers hire non-medical respite care to attend to their family members? (AARP, 2020)

The most common reason is denial – many caregivers don’t see the correlation between these health risks and their family commitments, but rather identify external reasons as being the causes. It can sometimes seem counterintuitive that errand-activities such as prepping meals and running errands would be the cause of their emotional burnout.

Another reason is shame – many caregivers see their family obligations as just that, an obligation, and looking for external help, or taking time-off, can often be seen as an in juncture on their family obligations.

The mere overlapping of family and personal obligations is a challenge many people struggle with, and the first step is recognizing that a friction does exist between these obligations. The second step is to understand the risk of not addressing this friction, and the potential repercussions not only to your own health and stability, but also to the family member you are responsible for. The third step is to take action.

Susan Brown:

“I would tell anyone in a similar situation to definitely consider respite care, from time to time and not feel guilty about it.  If we as caregivers don’t take care of ourselves then we can’t take care of the people we love in the way they deserve.”

Just like with any job, everyone needs a vacation – and few other jobs require the 24-hour attention that being a primary caregiver often demands. It can be argued that few other jobs require the emotional fortitude of being a primary caregiver if the family member has a delicate health condition.

The responsibilities of being a caregiver is being shared by members of every generation – Baby Boomers, Gen-X, Gen-Z, and Millennials – and regardless of your age there is only so much emotional and physical strain a person can take. Add to it the added pressure of working from home and homeschooling that many adults are dealing with these COVID-19 times, and what might have felt “doable” in the past has now become a ticking time bomb for many caregivers.

Every caregiver needs the gift of respite, and while asking other family members for help might be difficult given the “new normal” and its challenges, the emergence of respite services offers a new option for families to study. Hero Senior Care has made respite care a priority, with the goal of matching its community leading senior-care workers to family structures and not just the care receivers. While it is still an up and coming market, thousands of families are signing up for respite care under the premise of seeing it as an investment that will pay dividends to the primary caregivers, to their friends, and to their families.

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About The Author

Enrique Jose Garcia

Freelance Writer

Enrique Garcia is a freelance writer who specializes in and is dedicated to social issues. He is currently a field reporter in Latin America where he covers the phycological impact of the Venezuela Crisis. Enrique holds a Master of Public Administration from the London School of Economics and Political Science and Bachelor of Science in Business and International Politics from Boston College

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