What Is Caregiver Burden? 4 Common Signs

Caregiver burden describes the weight of responsibility from caregiving activities

The term caregiver burden describes the cumulative toll experienced by family caregivers. Cake explains the difference between burden and burnout, signs of caregiver burden, and how to relieve caregiver burden.

 

Caregiving is not a one size fits all experience. Each situation has its unique pressures and specific caregiver duties. 

For example, the life of a caregiver for an older adult with Alzheimer’s or dementia might be very different from someone who is caring for a loved one with multiple chronic health conditions.

The overall burden may be equal, but the areas of life affected might be very different.

We explain what the caregiver burden is and the difference between burden and burnout, share 4 signs of caregiver burden and 3 ways to relieve burden, and share 2 ways non-caregivers can provide support.

 

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What is caregiver burden?

Caregiver burden is used to describe the cumulative emotional, physical, and financial toll experienced by family caregivers.

Think of burden as being a load, pressure, an immense duty, and/or responsibility. 

For some caregivers, the burden of caregiving may include all of the stressors listed above. 

For others, the toll might be financial only. 

 

What’s the difference between caregiver burden and burnout?

The term caregiver burden is used to describe the weight of responsibility that a person shoulders due to their caregiving activities.

This burden can lead to caregiver burnout, but doesn’t always.

However, as the responsibilities and burden of caregiving grow, the risk of burnout also increases.

 

4 common signs of caregiver burden

Recognizing the signs of caregiver burden can help you proactively manage stress and reduce the chance of burnout.

1. Feelings of being overwhelmed
Many family caregivers start providing care without much notice or preparation.

For example, if your older adult is suddenly hospitalized and then ready to be discharged, you might find out that they don’t qualify to stay at a skilled nursing facility to continue recovering because they didn’t meet the Medicare requirements for this coverage. That means they will return home, where they’ll need someone to take care of them.

And in cases where the person receiving care lives with Alzheimer’s or dementia, the caregiver burden can be even greater.

2. Not being trained or properly prepared for medical or caregiving duties
The unfortunate reality is that people are often discharged from hospital stays with very little instruction or guidance for the primary caregiver.

As a result, you may be expected to perform complex medical duties in order to keep your older adult well. Even with support from time-limited home health services, you may not get enough training to feel confident about taking on these tasks.

If you have a loved one with dementia and other health conditions, you may initially have no idea how to manage their memory loss, agitation, or refusal of care.

Much of caregiving is learned on the job and the burden from this can be enormous.

3. Financial and work strain
The burden of caregiving tasks is complicated by the financial toll it takes on families. 

Caregivers provide an average of 4½ years of care, but many provide care for much longer. 

Leaving full-time employment to care for an older adult can strain already-tight budgets. 

And getting back into the workforce later can be extremely challenging and, for some, impossible. 

4. Lack of support 
Caregiver assistance programs are available, but qualifying can be challenging and, sometimes, not possible.

Many family caregivers prefer to avoid assisted living communities or nursing home care, but if public community-based support is not available, are left with few options.

 

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3 ways to relieve caregiver burden

The situation might feel dire, but it’s possible to reduce the caregiver burden by exploring a wide variety of caregiver support options.

The process might take time, but once you get connected with helpful resources, your caregiver burden will be reduced.

1. Use local caregiver resources
Find out if your older adult qualifies for any respite, adult day program, or caregiver services through the local Area Agency on Aging.

Next, look online for free caregiver resources and caregiver training. 

Also, consider online caregiver support groups to get ideas and emotional support.

2. Seek counseling
Counseling for caregivers is available, and can be a crucial tool in helping you manage emotions and problem-solve tough caregiver and family situations.

More and more therapists are specializing in the unique needs of family caregivers and the burdens they face.

Counseling can be a way to vent your frustrations and learn coping strategies to ease the caregiver burden.

3. Take care of yourself
Yes, we know you have heard it many times before, but it always bears repeating. 

Taking care of yourself is one thing you definitely have control over and it can have a significant impact on your caregiving burden. 

Carve out time for yourself each day to relax, take a walk, or participate in enjoyable activities. 

Get the best sleep you can and eat a balanced diet rich in whole grains, fruit, and vegetables.

 

2 tips for helping family caregivers

If you’re not the one providing care, you can still do a lot to help someone who is experiencing caregiver burden.

1. Stay in touch
Caregivers may feel isolated and alone. Staying in touch is a way of providing a supportive community. 

Find out the best communication method for the caregiver, whether it be a phone call, email, Facetime, or texting, and set reminders for yourself to check in regularly.

2. Offer specific help
Rather than asking “how can I help?” offer to complete specific tasks. 

Picking up prescriptions, grocery shopping, or spending time with the care receiver so the caregiver can take a break are great options.

 

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Guest contributor: Joincake.com is an end-of-life planning website that provides research, articles, and tools to help people with estate planning, legacy planning, and honoring loved ones’ final wishes.

 

Sources: Caregiving in the U.S. 2020, The National Alliance on Caregiving; Decreasing Hospital Length of Stay: Effects on Daily Functioning in Older Adults, Journal of the American Geriatrics Society; Area Agencies on Aging, Eldercare Locator

 

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