When a parent must care for a parent: How to avoid caregiving burnout, according to experts

For members of the so-called "sandwich generation," doing double-duty caregiving can take a toll.

Serving as a caregiver for a parent with dementia while also caring for kids and maintaining social and work relationships can come with physical, mental and emotional challenges, several experts expressed to Fox News Digital. 

It can be especially difficult dealing with the role reversal, experts say.

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"The role of a parent is someone to look up to, respect and listen to," Dr. Nancy Frye, PhD, a professor of psychology at Long Island University Post Campus in Brookville, New York, told Fox News Digital.

When a parent is in cognitive decline, questions arise about how to step out of traditional parent-child roles, she said, with "no clear norms or guidelines."

"People have lived their lives looking up to their parents, turning to them for advice, and respecting their privacy and autonomy," Frye continued. 

"Now, they find themselves poking around in their parents' affairs and wondering when to start making decisions for them."

"Sandwich generation" caregivers — those who are tasked with taking care of multiple generations, such as parents and children, simultaneously — reported significantly higher levels of personal burnout compared to those who care solely for children, according to a 2023 study published in the International Journal of Aging & Human Development.

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One middle-aged caregiver from Long Island, New York, who asked to withhold her name, told Fox News Digital she can barely find time to take a shower when taking care of her mother with dementia. 

"How can I find time to go for a walk or coffee with friends when I am afraid she will wander or fall?" she asked.

To avoid caregiver burnout when taking care of a parent who is dealing with an illness such as dementia, health experts said it is important to carve out time for yourself.

"Caring for a person with dementia can be very stressful," Frye said. "In order to take care of somebody else, you need to take care of yourself. It is OK to take a break."

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Dr. Marc L. Gordon, chief of neurology at Zucker Hillside Hospital Northwell Health on Long Island, New York, said caregivers should not hesitate to rely on others.

"It is important to find time for respite, and to ask for help rather than trying to do it all by yourself."

He added, "Just like they tell you on an airplane, in case of an emergency, you should put on your own oxygen mask before attempting to assist others."

Darci Henry, a certified dementia practitioner and licensed nursing home administrator with Trualta — a Canadian company that provides online support and education for caregivers — said caregivers experience a range of emotions, all which are valid.

Henry emphasized to Fox News Digital the importance of delegating responsibilities to other family members and outsourcing tasks. 

This may mean using community resources, such as meal prep, grocery delivery and laundry services.

"Reaching out and getting that extra layer of support is really important for your own preservation," Henry said. 

"Taking time for self-care is not selfish. It’s necessary."

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Even for those who cannot leave the house, Henry suggested taking "micro moments." 

"It can be something as small as taking a few deep breaths, doing some stretching, standing outside on your porch or just enjoying a cup of coffee," she said.

It is also important to carve out time for family relationships and daily check-ins with spouses or partners, according to Henry. 

That could include going for a walk after dinner, having regular family meetings and discussing the division of responsibilities. 

"If there are underlying issues in the family, you’re definitely going to see them come up once the caregiving role starts," Henry said. 

People should seek professional help if the strain of caregiving is affecting the relationship, she advised.

"Many families have someone from the outside come in and mediate the meetings."

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Having an outside perspective can help "provide a different lens" for the conversation and make sure everyone is heard, Henry noted. 

While communicating, she said it's key to be respectful and understand limitations and expectations.

When it comes to speaking with children about their grandparent’s condition, Henry said knowledge is power. 

"The more you can educate the teenager or young adult about what is happening, the more empathy they may have about the situation."

To help deal with the mood swings often associated with dementia, Henry suggested adhering to a stable routine as much as possible and developing strategies to identify and prevent triggers for certain behaviors.

"Educating yourself on what is happening in that person’s brain is really important, because that will help you understand that they are not giving you a hard time, they’re having a hard time," Henry said.

It's best to embrace a "one-day-at a time" mindset, Frye suggested.  

"It’s tempting to take a parent's state and behavior — whether it's good or bad — as an indication of what's to come," she said.

"Try to take things as they come, moment by moment. Focus on a parent having a good or a bad hour or day, as opposed to the parent improving or declining quickly," Frye suggested.

Continuing to give a parent as much say and autonomy as possible can be helpful, she added — as long as it's safe.

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"Decades ago, Ellen Langer did a study in which people in a nursing home were given a plant and told either that they needed to care for it, or that the staff would care for it," Frye said.

"Those who were tasked with caring for their own plants lived longer."

There are approximately 53 million caregivers in the U.S. as of 2020.

That's a jump from 43.5 million in 2015, according to the Centers for Disease Control and Prevention.

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