Caregiver burden, burnout, and stress are getting more attention than ever before. Still, there is a long way to go in providing the support and resources that people so desperately need.
Jump ahead to these sections:
- What is Caregiver Burden?
- What Are the Common Signs of Caregiver Burden?
- What Can You Do to Prevent Caregiver Burden?
Caregiving is not a one size fits all experience. Each situation has its unique pressures and specific caregiver duties. A caregiver for an adult with schizophrenia can be different than someone taking care of a loved one with multiple physical problems. The burden may be equal but the areas of life affected might be very different.
What is Caregiver Burden?
Caregiver burden is used to describe the emotional, physical and financial toll experienced by family caregivers. We think of burden as being a load, pressure, an immense duty, and/or responsibility. For some caregivers, the burden of caregiving may encompass all of the stressors listed above.
For others, the toll might be financial only. AARP and The National Alliance for Caregiving report that from 2015 to 2020 that the number of Americans providing unpaid care increased from 43.5 million to 53 million.
Women make up 61 percent of caregivers, and 45 percent report at least one financial impact. Difficulty coordinating care has risen from 19 percent in 2015 to 26 percent in 2020. All of this adds up to a growing caregiver burden.
What’s the difference between caregiver burden and caregiver burnout?
Caregiver burden can lead to caregiver burnout, but not always. A family caregiver can have a significant caregiver burden and not experience caregiver burnout, but this is probably rare. As the responsibilities of caregiving grow, the risk of caregiver burnout also increases.
Caregiver burnout can be characterized by symptoms of depression or anxiety, declining health, alcohol or drug use, poor sleep, inadequate nutrition, irritability, and anger. Burnout can also lead to resentment and lack of empathy.
What Are the Common Signs of Caregiver Burden?
Caregiver burnout is an accumulation of various factors that combine to create a feeling of excessive and unmanageable pressure. Some of the signs are simply the byproducts of a lack of support and resources among all caregivers. The burden continues to rise for families due to the aging of the population and the rising numbers of people in need of care.
Many of these signs of caregiver burden may be familiar but you may not think of them as burdens, but rather the typical responsibilities of caregiving. Recognizing the signs of burden can help you cope and manage better.
More and more family caregivers are expected to provide care sooner than they are ready for it. If your loved one goes into the hospital for a medical event, they may not qualify for in-patient rehabilitation unless they stay overnight for three nights. That means they will come home, and someone has to take care of them.
Over the years the length of stay in hospitals for older adults has declined. Moreover, hospitalization itself may lead to a decline for already frail older adults. If someone has cognitive impairment, the caregiver burden can be even greater. The immediate and urgent needs of a family member can lead to feelings of being overwhelmed.
Other situations grow in caregiver burden over time due to continued decline or added disability. Just when you think you have things under control, something else happens, which adds additional tasks.
Feeling unprepared for caregiving duties
Back to our hospital example above, the reality is that people are discharged home with very little instruction or guidance for the primary caregiver. You may be expected to provide very complex medical duties even with support from time-limited home health services.
If you have a loved one with both dementia and medical problems, you may have no idea how to manage memory loss, agitation, or refusing care. Much of caregiving is learned on the job, and the stress can be enormous.
Financial and employment strain
The burden of caregiving tasks is also complicated by the financial toll it is taking on families. The AARP/National Alliance on Caregiving report says that “six in 10 caregivers report working while caregiving and the majority have experienced at least one work-related impact...When this happens, caregivers more often face financial impacts and are twice as likely to report high financial strain.”
Since we already know that most caregivers are women, the impact on their careers alone can be very difficult to overcome. Caregivers provide on average 4 and a half years of care, but many provide care for much longer. Getting back into the workforce can be extremely challenging and, for some, impossible.
Lack of support resources
Caregiver support resources are available, but qualifying can be arduous and, for some, not possible. For people with adequate financial resources, hiring private caregivers is an option, but for most people, finances are limited, and personal caregiving is expensive. Most family caregivers care deeply for the person they provide care to and want to avoid nursing home care. But, if public community-based support is not available, caregivers are left with few options.
What Can You Do to Prevent Caregiver Burden?
The situation might feel dire, but you can put together enough caregiver resources to prevent caregiver burden if you explore every option. Just be prepared for a process that might be complicated and time-consuming, but once you are connected, you can relieve some of your burdens.
The first thing you may want to do is see if your loved one qualifies for any respite, adult day care, or caregiver services through your local Area Agency on Aging. Many of the programs they will offer may be income-based, but it is good to check on what is available since programs and funding are constantly changing.
Next, look online for free caregiver resources and caregiver training. For example, AARP, the Alzheimer’s Association, and the National Alliance for Caregiving are just a few of the valuable programs that provide education, training, and support. Also, consider online forums and group chats to get ideas and emotional support.
Counseling for caregivers is available and can be a crucial tool in helping you manage emotions and problem solve 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 lessen the caregiver burden.
Take care of yourself
Yes, we know you have heard it before, but it always bears repeating. Taking care of yourself is one thing you do have control over, and it can have a significant impact on your caregiving burden. Taking care of yourself entails a focus on the pillars of good health.
It won’t be easy but start with carving out time for yourself each day to relax, take a walk, or participate in an enjoyable activity. Good sleep may be hard to come by, but getting adequate sleep will improve your mood, give you energy and help you cope. Try and eat a balanced diet that emphasizes non-processed foods, low sugar, and fresh fruits and vegetables.
How Can You Help Someone Experiencing Caregiver Burden?
You can do much to help someone experiencing caregiver burden; you just have to make it a priority. Scheduling tasks in your calendar is a great way to make sure you honor your commitment to helping someone.
Stay in touch
Caregivers may often feel isolated and alone. They may feel that their entire identity has been erased. Staying in touch is a way of bringing the outside world in and allows the caregiver the opportunity to express their feelings. Staying in touch is also how you can find out ways to help ease the caregiver’s burden. Find out the best communication method for the caregiver, whether it be a phone call, email, Facetime, or texting.
Make specific suggestions
Rather than asking “how can I help,” offer to do specific tasks such as pick up prescriptions, grocery shop, or spend time with the care receiver so the caregiver can take a break. If you offer to help with specific tasks, the caregiver may be more likely to ask you to help with other things as well.
There is a reason delivering meals is such an acceptable and appreciated gesture. It is helpful because it is one less thing a caregiver has to worry about. Make it even easier by delivering the meals in containers that don’t need to be returned.
Offer to research resources
It is very time-consuming to research caregiver resources. You can help by making those calls, gathering information, and keeping a log of phone numbers, criteria for support, and the contact person. Investigate educational and support groups and forums to identify reliable sources of information.
Relieving Caregiver Burden
Caregiver burden is a real and growing problem for many caregivers across the country. Knowing that you are not alone may be a small consolation for you, but have faith that you can solve problems and get the support you need if you look for it.
- “Caregiving in the U.S. 2020.” The National Alliance on Caregiving, www.caregiving.org/caregiving-in-the-us-2020/
- “Decreasing Hospital Length of Stay: Effects on Daily Functioning in Older Adults.” Journal of the American Geriatrics Society, agsjournals.onlinelibrary.wiley.com/doi/full/10.1111/jgs.14767
- “Area Agencies on Aging.” Eldercare Locator. eldercare.acl.gov/Public/About/Aging_Network/AAA.aspx