Family Caregivers: The Real Story

Unlike licensed providers, also known as formal caregivers, informal caregivers typically go unpaid. Usually a spouse, partner, family member, friend, or neighbor, these individuals are responsible for assisting others with medical tasks and daily activities such as dressing, bathing, eating, and taking medication.

As selfless as caring for another individual can be, unpaid caregivers often pay a price for their services. Studies show caregivers are often under-equipped or under-prepared when it comes to caring for another individual. Many also suffer from a range of physical and mental health concerns including fatigue, depression, and anxiety.

Around 3.5 million Americans have provided unpaid care to an adult or child in the last 12 months. Many of these caregivers (82%) care for one other adult, while 15% care for 2 adults, and 3% for 3 or more adults. Unpaid caregivers provided services worth an estimated economic value of $470 billion in 2013 alone. These figures will likely increase over time as the baby boomers continue to retire, which will increase the need for at-home caregivers.

If you or someone you know provides unpaid care to another individual, learn how that role as a caregiver can affect that person’s emotional and physical health.

What It’s Like to Be a Caregiver

Studies show the role of a caregiver often comes down to gender. Upwards of 75% of all caregivers are female, and the average age of all caregivers is 49.2. Male caregivers are more likely to handle more administrative tasks like finances and the arrangement of care, while female caregivers are more likely to provide personal care. In addition, 36% of female caregivers handle caregiving tasks that include bathing, toileting, and dressing, compared to just 24% of male caregivers. According to the National Alliance for Caregiving, 16% of male caregivers help with bathing versus 30% of females, and 40% of male caregivers use paid assistance for a loved one’s personal care.

On average, caregivers spend:

• 13 days each month on tasks such as shopping, food preparation, housekeeping, laundry, transportation, and giving medication
• 6 days per month on feeding, dressing, grooming, walking, bathing, and assistance toileting
• 13 hours per month researching care services or information on disease, coordinating physician visits, or managing financial matters

Caregivers often feel as if they don’t have a choice when it comes to administering care. 57% of caregivers report that they do not have a choice about performing clinical tasks, and that this lack of choice is self-imposed. Also, 43% feel that these tasks are their personal responsibility because no one else can do it or because insurance will not pay for a professional caregiver; 12% report that they are pressured to perform these tasks by the care receiver; and 8% report that they are pressured to perform these tasks by another family member.

The Emotional and Physical Effects of Being a Caregiver

Considering the pressures that come with being a caregiver, including those from the care receiver and other family members, many of these individuals tend to suffer from anxiety and depression. Between 40- 70% of caregivers have clinically significant symptoms of depression. Caregivers suffering from depression are more likely to have coexisting anxiety disorders, substance abuse or dependence, and chronic disease.

Caregivers also have higher levels of stress compared to non-caregivers. They often describe feelings of frustration, anger, guilt, fatigue, or helplessness as a result of providing care.

Evidence shows that most caregivers are ill-prepared for their role and provide care with little or no support, which can contribute to feelings of anxiety and depression. However, more than one-third of caregivers continue to provide intense care to others while suffering from poor health themselves. Caregiving can also result in feeling a loss of self-identity, lower levels of self-esteem, constant worry, or feelings of uncertainty.

All this added stress and anxiety can lead to changes in a person’s behavior, including higher rates of resentment or hostility, thoughts of suicide, withdrawing from social activities, and self-imposed isolation. This can lead to elder abuse and poorer health outcomes for patients and caregivers.

Studies show around 11% of caregivers report that caregiving has caused their physical health to get worse. Caregivers are more likely to suffer from body aches, headaches, acid reflux, obesity, bodily pain, reduced antibody responses, and slower wound healing than non-caregivers. Caregivers also face an increased risk of cancer and heart disease and lower levels of self-care.

Caring for yourself can be difficult, or may even seem selfish, when you’re caring for a loved one with a chronic condition or serious health issue, but you shouldn’t neglect your own health as a caregiver, or you could put the patient at risk.

Staying Healthy as a Caregiver

If your responsibilities as a caregiver are taking a toll on your physical and mental health, consider reaching out to a loved one for help. Additional at-home care services can be expensive, but you shouldn’t have to go it alone if you’re not feeling well or prepared for the challenge. If you need assistance, consider asking your neighbors, friends, or members of the local community for help. Taking a day off here and there can dramatically improve your physical and mental health. If you put your health at risk to care for a loved one, you may endanger their lives as well.

All caregivers should have a fully realized care plan in place when caring for a loved one, including lines of support and a schedule for self-care.

You should also consider investing in your own education as a caregiver. Considering many caregivers feel unprepared for the job, you can try doing some research online or attending at-home care workshops and programs to boost your confidence as a caregiver. If you have any questions, contact a professional that can steer you in the right direction, so you don’t have to live with the stress and uncertainty of going it alone. Visit “Resources for Caregivers” from the U.S. Department of Health and Human Services for more information.

Remember to take breaks from caregiving when necessary, and see your primary care provider on a regular basis. If your health deteriorates, you could put the patient at risk. Keep these ideas in mind to improve your health as a caregiver.