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. Think of burden as being a load, pressure, an immense duty, and/or responsibility. For some caregivers, the burden of caregiving may encompass all the stressors listed above. For others, the toll might be financial.
AARP and The National Alliance for Caregiving report that from 2015 to 2020 the number of Americans providing unpaid care increased from 43.5 million to 53 million. Women make up 61 percent, and 45 percent report an impact financially. Difficulty coordinating care has risen from 19 percent in 2015 to 26 percent in 2020. All of this adds to caregiver burden.
What’s the difference between caregiver burden and caregiver burnout?
Caregiver burden can be thought of as the weight of responsibility that a person shoulders due to their caregiving activities. This burden can lead to caregiver burnout, but not always. As the responsibilities and burden of caregiving grow, however, the risk of burnout also increases.
Caregiver burnout is accompanied by symptoms of depression or anxiety, declining health, alcohol or drug use, poor sleep, inadequate nutrition, irritability and anger. It can also lead to resentment and a lack of empathy.
What Are the Common Signs of Caregiver Burden?
Recognizing the signs of caregiver burden can help you cope and manage better, potentially preventing burnout. Some signs are simply the byproducts of a lack of support and resources. Many may be familiar, but you may not think of them as burdens.
Overwhelm: Many caregivers need to provide care before they are ready. If your loved one goes into the hospital for a medical need, they may not qualify for in-patient rehabilitation. That means they will come home, and someone has to take care of them. If the person deals with cognitive impairment, the caregiver burden can be even greater. Other situations increase caregiver burden over time due to continued decline or added disability.
Being unprepared: People are discharged from hospital stays with little instruction or guidance for the caregiver. You may be expected to provide medical responsibilities, and even with support from home health services, you may not feel prepared.
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 burden can be too much to handle.
Financial and work strain: Caregiver burden is further complicated by the financial toll it takes on families. Caregivers provide an average of 4 and a half years of care, but many provide care for much longer. Loss of full-time employment can strain already-tight budgets. Getting back into the workforce can be extremely challenging and, for some, impossible.
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.”
Preventing Caregiver Burden
The situation might feel dire, but caregiver resources can help prevent caregiver burden.
Caregiver resources: First, see if your loved one qualifies for any respite, adult daycare, or caregiver services through your local area agency on aging. Next, look online for free caregiver resources and caregiver training. Also, consider online forums and group chats to get ideas and emotional support.
Next, look online for free caregiver resources and caregiver training. For example, AARP, the Alzheimer’s Association, and the National Alliance for Caregiving offer education, training, and support. Also, consider online forums and group chats to get ideas and emotional support.
Counseling: Counseling for caregivers is available and can be helpful when managing emotions and solving caregiver problems. More therapists are specializing in the unique needs of family caregivers and the burdens they face. Counseling can provide a safe space to vent your frustrations and learn coping strategies to diminish the amount of strain and burden you feel.
Self-Care: Taking care of yourself is a critical piece of the puzzle and shouldn’t be neglected. Start small by taking a walk around the block or meeting a friend for coffee. Try and get the best night of sleep you can so you’ll have energy and be able to cope. Maintain a balanced diet with plenty of non-processed foods, low sugar, and fresh fruits and vegetables.
How Can You Help Someone Experiencing Caregiver Burden?
You can do a lot to help someone experiencing caregiver burden. Here are several of the best ways to help a caregiver you know.
Communicate: Caregivers may feel very alone. They might also feel like their identity has been erased. Staying in touch helps bring the outside world in and gives the caregiver an opportunity to express their feelings. By regularly communicating, you can also learn about 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 accomplish specific tasks such as picking up prescriptions, shopping for groceries, or spending time with the care receiver so the caregiver can take a break.
Deliver meals: Delivering meals is often a very appreciated gesture. Taking care of a meal or two means the caregiver has one less thing to worry about. Make it even easier by delivering the meals in containers that don’t need to be returned.
Offer to research: It is very time-consuming to find out about available caregiver resources. You can make calls, gather information, and keep a list of phone numbers, criteria for support, and contact information.
Caregiver burden is a real problem for many caregivers. Knowing that you are not alone may be a small consolation, but just know that this problem can be solved, and burnout prevented, by seeking support, taking care of yourself, and maintaining some balance in your life.