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Patriot Life - Preventing Caregiver Burnout

Fall 2016
Issue No. 9

Preventing Caregiver Burnout

Date: November 1, 2016

When caring for a loved one with dementia, it’s crucial to take time to recharge and maintain your own health.


Preventing Caregiver Burnout

Thinking back to the years she spent caring for her husband as he suffered from Alzheimer’s disease, the elderly woman says sadly, “I would sit in my living room, and I would look out the front door and I would think, ‘I would like to go out that door and never come back.” 

The woman, one of many caregivers featured in a set of educational videos compiled by Peter Rabins, M.D., co-director of Johns Hopkins’ Division of Geriatric Psychiatry and Neuropsychiatry, is hardly alone. In 2015, some 15 million people across the United States provided care for a loved one suffering from Alzheimer’s, according to the Alzheimer’s Association. 

Bearing witness as a loved one’s memory slips away is undeniably painful. Add to that the difficult—often round-the-clock—reality of providing care, and it’s no surprise that many caregivers, like this woman, succumb to feelings of exhaustion, hopelessness and burnout, says Rabins. 

Such burnout is a precursor to a variety of health issues that can bring caregivers to the doctor’s office more often, or even to the emergency room. One of the top risk factors for becoming overwhelmed, he says, is not having any or sufficient alternates—such as family, friends or professionals—to provide respite care for a loved one. “Some caregivers feel like they’re the only one who can do it because there’s no one who can do it quite as well,” Rabins says.

Going it alone isn’t just physically and emotionally exhausting, he explains. It also leaves little time for self-care. That’s why the amount of time spent actively caregiving, which sometimes correlates with the severity of a patient’s illness, is another risk factor for burnout, says Rabins. The more time caregivers spend tending to their loved one, the less time they have for activities that can help maintain their own health, such as cooking healthy meals, exercising or even keeping regular appointments with the doctor or dentist. 

The result? Minor health problems can blow up into health crises that require significantly more effort and resources to treat.

A caregiver’s past response to stress in general is a good predictor of how he or she will respond to the stress of caregiving, Rabins says. Those who tend to respond to stress by becoming extremely anxious are more apt to be quickly overwhelmed. If social opportunities become more limited, he adds, caregivers miss out on being able to talk through their worries and frustrations. This toxic buildup can negatively impact the immune system, leading to more illness, or contribute to full-blown depression.

To prevent or ease burnout and its associated health consequences, Rabins offers this advice to caregivers:

— Educate yourself: Learn as much as you can about the disease and how it will progress so that you can adapt to those changes. Also investigate resources available nationally and in your community (see resource box) for respite care or classes that teach caregiving skills.

—Seek support: Reach out to friends, family and professionals to talk about your concerns. If sharing your sadness and frustrations in a group setting sounds more appealing, seek out an Alzheimer’s disease support group.

—Make time for yourself: Do whatever you can to carve out some time for activities that can keep you healthy and give you a break. Hobbies you enjoyed before, such as gardening, playing cards or going for a walk, can be welcome stress relievers now.

—Be aware of warning signs: Signs that caregiving stress is starting to affect your health include worsening sleep, unexplained weight loss or weight gain, less energy, forgetfulness, or persistent sadness or anxiety. If you experience any of these red flags, make an appointment to see your primary care physician. “Realize that taking care of yourself helps you to be a better caregiver,” says Rabins. 

Most caregivers cope well with the extreme chronic stress of providing 24/7 care for loved ones struggling with Alzheimer’s and other memory-robbing diseases, says Rabins. “That’s fortunate,” he says, “because caregiving is so prevalent that if it overwhelmed everybody, we’d have a really serious health crisis.” 
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Resources:

Visit bit.ly/PLmemory, the resource page of the Johns Hopkins Memory and Alzheimer’s Treatment Center, to find opportunities for patient and family support, including social clubs, podcasts, a caregiver education series and more. The site also offers links to two seminal books: The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss and Practical Dementia Care.

Watch a series of videos featuring conversations with—and advice from—caregivers on topics including learning not to argue, how to help a family member stop driving, dealing with wandering and aggression, and more at bit.ly/PLalzheimers