Alzheimer's Caregiving Burnout — How To Take Care of Yourself While Tending To Someone You Love
Caring for a person with Alzheimer's or another form of dementia is not easy. That’s because, in many ways, the disease affects those who act as Alzheimer's caregivers more than it affects the patient. It’s no wonder that AD is often called a "family disease."
Caregivers face myriad challenges. Communication can be difficult and the stress overwhelming. It’s tough dealing with a loved one’s challenging, and sometimes aggressive, behavior. Moreover, caregivers have to juggle their own needs as well as the needs of the patient. Most caregivers are women, and many have families of their own.
“With Alzheimer’s, it is not just those with the disease who suffer — it is also their caregivers and families,” Robert Egge, chief public policy officer of the Alzheimer’s Association, told Congress in 2017. “Caring for a person with Alzheimer’s takes longer, lasts longer, is more personal and intrusive, and takes a heavy toll on the health of the caregivers themselves.”
Eventually, every person with AD will need help as the disease progresses. At first, the person will need simple reminders and very little monitoring; but as the disease continues, a patient will need frequent watching and scheduling. In the latter stages, a patient may need 24-hour care. Eventually, a caregiver will have to make decisions about adult-living facilities and other quality-of-life issues. How can you be an effective caregiver and yet care for yourself? It’s a simple question with difficult answers.
Don't give in to guilt.
When the diagnosis is finally in, denial and anger may be your first emotions. Guilt also often plays a part: You may feel guilty when you get angry at the person you love, when you’re impatient because your loved one doesn’t listen to you, or because you wonder if you could be doing more.
Some guilt is pointless. Moving your dad into an assisted-living facility may initially make you feel relieved, because the change makes your life easier; but you can also soon feel guilty that you’re no longer providing direct care, which can leave you anxious and depressed. To avoid feeling guilty, don’t promise things you can’t deliver, such as “I’ll never put you in a home.” Don’t beat yourself up over things that are unrealistic or things you cannot control. And don’t allow guilt to be counterproductive or to waste your mental energy.
Seek out other caregivers.
Support groups, online forums, and social media all allow you to share stories and trade ideas with others who are going through a similar tough time. And knowing you’re not alone can make a world of difference.
“Caregivers have to realize that this is reciprocal,” says Daniel C. Potts, MD, F.A.A.N, attending neurologist at the Veterans Administration Medical Center in Tuscaloosa, Alabama, and at the University of Alabama. “They can’t be all give. They have to get something back from the caregiver experience. It’ll be terrible, if they don’t. They’ll burn out, and they’ll die before the person with Alzheimer’s does, as a lot of them will.”
Consider your own health.
Your loved one is sick, but you’re not. Let’s keep it that way. Research shows that caregivers, especially women, are under a lot of stress that can manifest itself in a variety of ways. Female caregivers are more likely than men to become anxious or depressed. Stress, along with depression, can cause weight gain, especially in women. And obesity creates its own risks for heart disease, stroke, and diabetes. The immune system may also get weaker, making caregivers more susceptible to infections and other ailments.
Take action.
Caring for someone with AD isn’t easy, but there are steps you can take to help manage some of the stress and anxiety that come with helping someone with Alzheimer’s. The following can help:
Take classes on how to care for someone with AD, at a local hospital or some other facility.
Look for an adult day-care center. A brief break from caregiving will give you time for yourself.
Let other people help. Ask a friend to sit with the patient while you’re out of the house or have a relative help out with simple tasks, like grocery shopping.
Join a support group and talk about caregiving tips and strategies.
Exercise, eat the right foods, and get enough sleep.
See your own doctor regularly.
Traits of an Effective Caregiver
Here are six important things for any caregiver to keep in mind:
Be Empathetic. Understanding what someone is thinking or feeling will allow you to become an effective caregiver. Try to identify and then anticipate the needs of someone who can no longer communicate. Don’t let your pride or ego get in the way.
Educate Yourself. The best way to become empathetic is to learn all you can about Alzheimer’s.
Be Creative. A person with Alzheimer’s might resist help, so be aware of situations that might agitate or be irksome. If a person doesn’t want to shower, be creative and offer a sponge bath. If a belt is too burdensome to undo, buy pants with an elastic waistband.
Adjust Your Expectations. Right now, there is no cure for Alzheimer’s. Understand that. It’s not a fatalistic approach, but one that is grounded in reality.
Know Your Limitations. You’re committed to the person you’re caring for. That’s a good thing, but even the best caregiver has limits in helping. If you need help, reach out.
Prepare Yourself for the End. When Alzheimer’s becomes terminal, there’s not much you or anyone else can do, no matter how devoted you are. Just know that you eased your loved one’s burden on the last leg of the journey.
Coping With Complications
Although Alzheimer’s is best known for causing memory loss, the disease has other debilitating effects as the brain’s synapses become more and more tangled. Consider these concerns and some suggested ways for managing them.
Depression
The relationship between depression and Alzheimer’s is so complicated that many times, doctors confuse one with the other. In fact, depression and Alzheimer’s share many of the same symptoms. As a person loses control, the symptoms of depression can worsen.
Treating a depressed patient with AD is generally the same as treating a depressed person without AD. The first line of defense is antidepressants, such as selective serotonin reuptake inhibitors that increase the levels of serotonin in the brain. Low levels of serotonin are thought to contribute to symptoms of depression.
There are other ways to treat depression too. Exercise will naturally increase serotonin levels, and counseling and support groups can help.
Psychosis
Delusions, agitation, and aggression are hallmarks of Alzheimer’s disease, but you can manage some of these.
Avoid arguing when a person with AD wants to visit someone who is deceased. Never be confrontational by pointing out that the person is no longer living. Instead, say something like “I’d like to see him too.”
Keep a calm environment. Minimizing noise and glare can create a more pleasant atmosphere.
Don’t take the behavior of a patient with AD personally. The anger and agitation are not directed at you.
If nondrug approaches don’t work, chances are that the person will need to be medicated. Be cognizant of a drug’s side effects and potential interactions and talk to the treating doctor about some of the options available.
Insomnia
Difficulty sleeping at night can be another common problem in AD patients. Frequent napping during the day could be a consequence of the illness. Some may suffer from sleep apnea, where breathing repeatedly stops and starts. Loud snoring, with pauses that may last many seconds and are then followed by gasping for air, is a sign of sleep apnea.
Even if an AD patient doesn’t suffer from insomnia, she might have other problems that are interfering with her ability to sleep — such as simply getting up in the middle of the night and not knowing where she is.
Although some medications can help with insomnia, they also can create side effects. Lifestyle changes, such as avoiding television and other electronics before bed, taking a warm bath before bed time, limiting fluids at night, and avoiding caffeine or other stimulants may help without causing harm.
A version of this article appeared in our partner magazine, Alzheimer’s: New Hope for a Cure, in 2020.
