When we think of stress, many of us first think of work-related stress. However, for family members of someone with dementia, there is also the stress of caregiving—and there are far fewer resources or educational sources to help them handle it. The result is that caregivers often experience chronic stress, poor mental or physical health, and burnout. For Stress Awareness Month, we’re exploring what differentiates caregiver stress from other stresses and providing some strategies for managing it.

What is stress?

Stress is your body’s ability to take on a situation that needs heightened awareness, and it is similar to the fight-or-flight response. When you’re stressed, your body focuses on survival and shuts down parts meant for long-term management. This biological function is useful in short bursts. “If you’re running from a bear, you don’t care about battling pneumonia,” explains Dr. Justin Allen, Clinical Operations Manager at Tembo Health. “You just need to escape, so your body funnels all its energy to your muscles.” But with chronic stress, our body shuts down its ability to focus on our long-term health and instead gives us the adrenaline we need to respond to the stressor.

Caregiver stress is unique

While it may seem reasonable to lump all stress as just “stress,” caregiver stress is a little different. First, for caregivers who are unpaid family members, an enormous source of stress comes from not having background knowledge or education on dementia. They lack training or tools, and they have little idea of what’s common or what’s unusual in dementia patients. In addition, the fear of the unknown can make even relatively easy days stressful. How will the dementia progress? How much care will my loved one need? While today was an easy day, what will tomorrow be? This uncertainty means there’s less stability and a compromised ability to plan ahead.

Second, many caregivers struggle with the financial burden of care. There’s now an extra person requiring food, clothing, and care, which strains family finances. Often, the caregiver did not expect to be performing in-home care for a family member, and the financial burden is challenging to navigate.

Another unique stressor for caregivers is the shift in family dynamics. “Before this, the child was being cared for by the parent, and now you have this role reversal where the child is taking on that parental role,” says Dr. Allen. In addition to being unfamiliar territory in terms of how to interact, this transition can also make it challenging to set boundaries and rules. The loved one is not used to being the one taken care of or told what to do, and they may push back—making an already difficult situation more difficult.

The last common stressor for caregivers is the sense of isolation that caregiving can bring, However, while they feel isolated, caregivers are also almost never actually given time to themselves, because they’re caring for their loved one. After finishing work for the day, they come home to begin their second (or third) job: caregiving. There’s little time to socialize or step away from their role of caregiving, so caregivers feel isolated. “What’s unique about this is that not only are they feeling isolated from the world, but they’re also feeling like they’re never alone,” says Dr. Allen.

Long-term stress can have a major impact

For caregivers, the combination of a stressful situation and of continuing to neglect one’s own health can have lasting effects. “It’s like driving your car in the red all the time,” explains Dr. Allen. “You can do it, it’s responsive in that mode, but it’s not something you can handle for a long period of time or you’re going to wear your car out.” For caregivers, chronic stress often leads to poor mental health, depression, anxiety, trouble sleeping, poor memory, poor cardiovascular function, and a compromised ability to handle infections.

And of course, long-term stress can ultimately lead to burnout, when our bodies no longer have the coping skills to deal with stress. Initially, when we’re experiencing stress, we’re still motivated and have the drive to find solutions. With burnout, that feeling is gone. It’s a feeling of hopelessness, and it’s an unfortunate result of stress when it becomes overwhelming.

How can you manage the stress of caregiving?

Caregiving is certainly stressful, but there are helpful strategies for managing that stress and avoiding burnout.

• Focus on your physical health: Remember that your health matters too. Make sure to take your own medications and make your own doctor’s appointments. Try to stick to a healthy diet and find time to exercise to keep your body healthy and relieve stress.
• Find social outlets: Caregiving can feel isolating, so reach out to friends and family. Talk on the phone or plan an outing with friends so you have a time where you can unwind, vent, discuss problems, find solutions—whatever you like.
• Set boundaries: You wouldn’t expect anyone to be available 24/7, and the same goes for caregivers. Set boundaries and make it clear that you still need to be able to step away and handle your own responsibilities and needs.
• Get respite care: There are options for short-term care during the day where caregivers can drop off their loved one and take time for themselves to run errands, relax, see friends, or do any number of activities.
• Seek long-term care: Caregiving is time-consuming and stressful, and there may come a point where the best option is to look into long-term care. While this initial decision and transition can often feel stressful, assisted living removes the burden of care from your shoulders and allows you to spend time enjoying your loved one’s company.

Want to learn more about caregiver stress and strategies for managing it? Watch a webinar with Dr. Justin Allen, Clinical Operations Manager at Tembo Health, will discuss caregiving and how the stress affects our bodies, followed by ways to reduce that stress.