caregiver stress and burnout

The Unexpected Toll of Being a Family Caregiver

May 4, 2021

Family Caregiver Burnout and Caregiver Stress

Taking care of family members may seem like such a natural role to us, one we can’t imagine not doing. Therefore, many of us make promises or feel obliged to provide all aspects of care for loved ones. And, we may also be surprised by the toll this takes. Caregiver burnout is a fairly common experience for the family caregiver. We’ll explore some of the specific research about caregiver stress and its effects, as well as solutions.

Why is Caregiver Stress so Widespread?

Caregiving has all the features of a chronic stress experience. It creates physical and psychological strain over extended periods of time. It is also accompanied by high levels of unpredictability and uncontrollability. Additionally, caregiving has the capacity to create secondary stress in areas such as work and family relationships, and frequently requires high levels of vigilance. A family caregiver is always “on call”, never knowing when things might change or they might need to act in moments. 

Another underlying factor that makes the situation so stressful for the family caregiver is the sense of obligation to do it all. For example:

  • 82% of caregivers have difficulty saying “no” to the job.
  • 54% feel guilty about taking a break from their caregiver duties to make time for themselves.
  • 29% spend 40 hours a week or more caring for someone, leading to lack of sleep and poor professional performance.
  • 44% don’t think their loved one would be able to find someone else to provide care.

What Effects Does Caregiver Stress Have on the Family Caregiver?

Thousands of studies have determined that caregivers are at risk of emotional and physical health consequences. In fact, poor family caregiver health is one of the top reasons families seek assisted living.

Caregiving’s Emotional Toll

  • The vast majority of caregivers report experiencing stress, depression, and emotional problems at least twice a month, according to the CDC. And, nearly 15% report experiencing these conditions at least 14 days a month.
  • Between 40 to 70% of caregivers suffer from depression, while many caregivers also have anxiety.
  • Anger and irritability are also common symptoms of caregiver stress syndrome.

The Physical Toll

  • Only four in 10 caregivers would rate their health as “excellent or very good,” according to AARP’s 2020 Caregiving in the U.S. survey. This is down from studies five years ago, showing this problem is only getting worse.
  • Almost 18% report experiencing 14 or more days of poor physical health each month.
  • Caregivers have a 23% higher level of stress hormones and 15% lower level of antibody responses than non-caregivers.
  • More than half of caregivers say a decline in their health affects their ability to provide care.
  • Caregivers between the ages of 66 and 96 have a 63% higher mortality rate than non-caregivers of the same age.

Factors in Caregiver Stress

Despite all the statistics above, many caregivers also report positive results from caregiving. They gain new skills, feel fulfilled, and are driven by a sense of purpose. Even with positive effects, most caregivers will feel periods of stress. And, certain factors make caregiver stress, and especially the resulting toll, worse.

Dementia Caregiving

One factor that can worsen caregiver stress is taking care of someone with dementia. Dementia caregivers report more strain, health problems, and caregiver burnout than non-dementia caregivers. Dementia caregiving comes with unique challenges. As a progressive disease it also has an added level of unpredictability. Caregivers may have to deal with a wide range of behaviors while watching their loved one decline and change. 

Other Significant Variables

  • The care recipient’s behavior problems
  • Functional disabilities
  • The duration and amount of care provided
  • Vigilance demands (care recipient who needs round-the-clock care/supervision, for example)
  • Living together
  • Relationship between caregiver and care recipient, with spouses experiencing greater average stress
  • The caregiver’s gender, with females being more affected

Support

One of the most important variables in caregiver burnout is the caregiver’s support system. As mentioned above, feeling that one has no choice and has to do it all often leads to burnout. Check out the section on self-care and boundaries in our article here for some tips. Getting support is not a luxury, it is a necessity. As you can see from some of the numbers (and probably know from friends’ stories), caregiver stress can affect your caregiving abilities. When you get help, you help yourself and the person receiving care.

What are some of the key resources for caregiver support?

Let’s talk about resources in terms of addressing the major causes of caregiver stress.

1. Uncertainty and the need for high vigilance

This may often be the worst part of caregiving. The feeling of dread about getting a middle of the night phone call or seeing your loved one suffer crisis after crisis. We can advise you to take a break, but it’s not much of a break if you’re worried the whole time or interrupted by constant calls.

Solution: Get a comprehensive assessment and use care technology. 

Understand the big picture and what to put into place to reduce the risks. Programs like EasyLiving’s technology-supported home care are designed to spot issues early. We stay vigilant so you can relax a bit. Caregivers tell us not only do they see results for their loved one, it probably has the biggest impact on their wellbeing.

2. The duration and amount of care needed--doing it all

You might be feeling especially stressed because your loved one needs a lot of care, has a high level of functional challenges or behavioral issues. Other caregivers have been in the role a long time or may be isolated and overwhelmed. Even if you feel you have it all under control, trying to do everything yourself leads to burnout. It also leaves many caregivers with a difficult transition when they are no longer caregiving.

Solution: Take a break with respite care.

Build a care team to support you and your loved one. Bring in respite care once a week to start, so you can do a favorite activity or simply get away. Or, take a real holiday with the proper support so you truly get a break. Grab our Respite Care Checklist for the best experience.

3. Dementia Caregiving

Being a dementia caregiver is a constant learning process. It requires adaptability and the ability to persevere under frequent change.

Solution: Lessen the learning curve with help from experts.

If you’re a dementia caregiver, check out our Dementia Care Guide. Our expert dementia caregivers offer tips and tricks for common behaviors and challenges. You can also benefit from an individualized assessment and recommendations and/or support from dementia-trained caregivers. Consider joining an online or in-person support group and look at some of the many resources we offer and those from the Alzheimer’s Association.

Unsure if you need help? Wondering if it's time to get additional support for your loved one? Our home care self-assessment will help point you in the right direction with just a few questions:

Take the Quick Assessment

 

Topics: Caregivers

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