Research & Discovery

Q&A: Who experiences caregiver stress, and how can it be managed?

In the Emmy-winning HBO Max medical drama “The Pitt,” medical resident Mel King attempts to comfort a distraught woman who’s overwhelmed caring for her disabled mother.

“You know, caretaker’s fatigue is a real thing,” King says. “You have to take care of yourself, otherwise you’re going to end up in here, too.”

Though the term caretaker’s fatigue – or caregiver stress – has only recently gained recognition as a concept, the experience itself is all too familiar for many. To learn what it is, who is affected and how to manage it, UVA Today talked with University of Virginia School of Nursing professor Paula Sherwood

In Sherwood’s research, she looks for markers of stress in caregivers – like the level of cortisol stored in people’s hair – and develops interventions to provide support and relief.

Q. What is caregiver stress?

Nursing professor Paula Sherwood researches markers of stress in caregivers, like the level of cortisol in someone’s hair. (Contributed photo)

A. Caregiver stress is the strain that family members feel when their loved one is diagnosed with a medical condition, and it could be anything from Alzheimer’s disease to cancer to cardiovascular disease to having a child with neurodevelopmental disorders.

The term encompasses the shock of the initial diagnosis as well as the way that diagnosis changes families’ lives. Roles and tasks change within the family, finances change and social networking changes. Everything changes at that point to some degree. For some folks, it’s not a big or long-lasting change and they have the resources to cope with it. For other folks, there’s a huge barrage of stressors that they now face.

Q. How is it different from other kinds of stress?

A. If you’re walking down the street and you run into a bear, your mind is suddenly filled with fear. You’ve got shock, worry, anger, depression. It starts a physiological stress cascade in your body, which is the “fight, flight or freeze” response. The hormones in your body start pumping out molecules to help you fight whatever stressor that is. If you run into a bear, your cortisol will increase to give you extra energy to fight the bear. Your heart rate goes up, your blood pressure goes up. All of those things help prime your body to handle that bear. In normal cases, with an acute stressor, the bear will run away or die and things in the body return to normal.

When you’re a family caregiver, the initial diagnosis is only the first step of that stress cascade. Those threats keep coming. You have to worry about treatments, mortality, how your loved one is going to change. For caregivers, that bear never goes away, so your body continues to be in some degree of fight, flight, or freeze, and over time, it wears you out physically and emotionally.

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Q. Who tends to be most prone to caregiver stress?

A. The majority of research will tell you spouses and those who live with the person for whom they provide care tend to report higher levels of stress. Certainly, those caregivers who provide a lot of hours of care and those facing neurologic changes and a potentially terminal diagnosis report higher levels of stress. Relevant to our area, rural caregivers experience higher levels of stress, because care is harder to access both for themselves and the patient.

Q. How does caregiver stress manifest?

A. Emotionally, caregivers can have really high levels of anxiety and depression compared to the general population.

Physically, caregivers don’t respond to vaccines as well. They have increased incidence of upper respiratory illness. Their immune function doesn’t work as well, and that makes them more susceptible to a host of diseases. Caregivers have been shown to have higher levels of blood pressure, increased risk of heart disease, worse headaches, acid reflux and pain.

In 1999, a study showed that caregivers who are stressed have an increased mortality rate compared to caregivers who are not stressed. There have been other studies that replicate this, and some of them support that conclusion and others don’t.

Q. How can people manage this stress?

A. If you’re worried about physical health, then you need to look at helping people cope with being a caregiver. You have to decrease the emotional response so that your brain is not constantly in fight or flight mode. And you have to be proactive about taking care of yourself.

Research shows psychoeducational interventions help release and relieve stress. It doesn’t erase everything, but it does help. What we mean by “psychoeducational” is something where you not only teach caregiver skills, in terms of what to do at home with the patient, but you also provide support and counseling.

Getting them to keep up with their own primary care visits is challenging. A lot of it has to do with ensuring caregivers have access to primary care. Once they do, you have to make sure that they’re being taught how to advocate for their own health. Because in the end, if you don’t preserve caregiver health, you’re going to wind up with caregivers who are a lot sicker at the end of the care situation than they were at the beginning. You’ve basically created a new patient population. And caregivers that aren’t as healthy, emotionally or physically, are not going to be able to provide the same kind of care as those who are.