Caregiver burnout, caregiver stress, and caregiver exhaustion.
Whatever you choose to call it, caregiver burnout among all settings and diagnoses is unfortunately a very real and very common phenomenon. It not only affects caregivers’ mental health but their physical health as well.
Studies show that at this time, 43.5 million people (or 18%) of the U.S. population provide an average of 34 hours a week of unpaid care for a chronically ill, disabled, or aged family member or friend (Caregiving in the U.S.; National Alliance for Caregiving in collaboration with AARP Public Policy Institute; July 2015).
That’s a lot of people affected by burnout. As occupational therapists, we assist in educating the caregivers of our patients to reduce stress for everyone and work to achieve an increased quality of life for both our patients and their caregivers.
How is Caregiver Burnout Defined?
WebMD defines caregiver burnout as “a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude – going from positive and caring to negative and unconcerned.”
The caregiver begins to feel stressed, hopeless, and overwhelmed which can turn into a lack of motivation to fulfill their role as a caregiver. They may notice feeling significantly more fatigue, anxiety, and depression on a regular basis.
Other symptoms may include loss of interest in previously enjoyable activities, changes in sleep patterns, getting sick more frequently, changes in eating habits and appetite, changes in sleep patterns, withdrawal from friends and family, increased or excessive drug/alcohol use, or feelings/thoughts of wanting to hurt themselves or their family member that they’re caring for.
For more on signs and symptoms, see the 14 Signs of Caregiver Burnout by Vitas Healthcare.
Common Causes of Caregiver Burnout
Taking care of a loved one with a disease or disability is hard work. It is devastating to go from spouse, partner, son, or daughter to full-time caregiver.
Not only are caregivers dealing with the physical challenges of taking care of their loved ones, but are also dealing with the emotional impact that their loved one isn’t the same person they once were.
Caregivers may feel powerless or have a lack of control since they can’t “fix” their loved one but are spending so much time and energy to help as much as they can.
Approaching Caregiver Burnout as an OT
Given the impact of the effects of caregiver burnout, it’s important for occupational therapists to address this with any family members that will be taking on (or have already taken on) the caregiving role.
Depending on the setting, family members may become caregivers suddenly and without any time to process or prepare for the implications.
Examples of this could be taking care of a loved one after a stroke, traumatic brain injury, spinal cord injury or other sudden life-changing event without having proper support in place.
In this case, I address this during my patients’ scheduled family education time in my role as an OT in inpatient rehab. This is done separated from the patient so as not to cause them any excess worry about the responsibilities of their caregivers.
If you work in a geriatrics setting, you may not get scheduled one on one family education. It is still equally important to address this even if your patient’s family has been caregiving long-term.
You should discuss support and coping techniques, even if you don’t notice any burnout signs at the time.
Educating Caregivers on Ways to Cope
As occupational therapists, it is absolutely in our scope of practice to educate caregivers on ways to reduce the risk of caregiver burnout. Caregivers will oftentimes dive all in and neglect taking care of their own needs.
The first thing I address when I’m talking with family members is that it’s okay and encouraged to get help with day to day responsibilities. Starting the conversation will help them feel more at ease about the frustrations they may be feeling on a daily basis.
Asking friends and family for help as well as considering part time paid in-home caregivers is okay and not something to feel guilty about. Taking time away from caregiving responsibilities and focusing on one’s own mental and physical health can also help to reduce the symptoms of burnout.
It is crucial that caregivers realize the importance of taking time out for themselves to do an enjoyable activity, exercise, meditate, or relax.
A good text resource you can also recommend for caregivers working with dementia is the book Caring for a Loved One with Dementia: A Mindfulness-Based Guide for Reducing Stress and Making the Best of Your Journey Together. It aims to guide caregivers to learn to manage their grief, anger, and depression through a mindfulness-based dementia care (MBDC) program that can aid in reducing stress.
Allowing your patients’ caregivers to vent their frustrations, fears, and anxieties can help them realize it’s okay and therapeutic to talk to others about their thoughts and feelings to others.
There are numerous opportunities to attend group therapy or support groups (online and in person). Here are some more well-known groups:
- AARP Support Community Online
- Alzheimer’s Support Group Locator
- Family Caregiving Alliance
- Caregiver Support (AgingCare.com)
Have you used any other resources, ideas, or interventions to assist your patients and their caregivers? I’d love to hear about them in the comments and would be grateful to add them to this article. If you enjoyed this article, please share to others who you think may benefit from it as well.