Family Caregivers: How to Cope With a Challenging or Abusive Care Recipient

Dementia and other illnesses can cause aggression, verbal and physical outbursts

Getty Images

Sharon Jayson,

AARP

En español

Published November 22, 2022

Christopher* is a 55-year-old divorced dad. He’s also the primary caregiver for his 78-year-old mother.

“It's been a huge learning curve,” he says. “I had no idea what I was getting into.”

His mother — diagnosed with dementia shortly before moving into his apartment — also has been HIV-positive for 30 years following a blood transfusion. Under hospice care, she had been living with her mother, Christopher says, until “social services came in and said my mother can no longer live there. [A woman in her 90s] can’t take care of a 78-year-old.”

“They were going to put my mother in a home and the homes weren’t good. At that point, I stepped in and said, ‘Move my mom in with me,’ ” he says. “This was two years ago.”

Christopher, of San Clemente, California, says his mother and late grandmother had an unhealthy relationship and “used to fight a lot.” His own relationship with his mother is strained.

“We’ve never seen eye to eye,” he says. “We didn’t have a very great relationship. It was more like neglect. She just wasn’t the best mother.”

Resisting care

Christopher and others like him find themselves as caregivers for a parent, partner, sibling or relative with whom they’ve been at odds. In some cases, these family caregivers face verbal aggression or worse from the very person they tend daily. It can be an adult child whose older parent has undergone a dramatic personality change from Alzheimer’s or another disease. It can be a bedridden husband or wife who verbally abuses the caretaking spouse. Such caregivers have few options. They can’t abandon a helpless person but may not have the financial resources to hire even part-time relief if they can find someone. And although a long-term facility is often a last resort, both caregivers and care recipients may hesitate to take that step, leaving the care pair to spar in a volatile environment.

Such negative behavior is anticipated with certain illnesses, such as dementia, “because even a small amount of degeneration or atrophy in the frontal lobes of the brain can lead to a lot of aggressive behavior,” says Melinda Lantz, a geriatric psychiatrist at Mount Sinai Beth Israel in New York City.

“It’s very common in some course of their illness that people with dementia quite likely will be verbally abusive and possibly later physically abusive,” she says. “It’s because [the caregiver] is trying to provide care and the person is resisting the care.”

The most recent federal data on caregiving found almost one-third of caregivers (31.3 percent) provided 20 or more hours per week of care and more than half (53.8 percent) have given care or assistance for 24 months or more. Of all caregivers, just over 10 percent provided care or assistance to friends or family members with dementia or other cognitive impairment.

Gerontologist Jennifer Wolff says a stroke — depending upon the severity — can lead to dementia-related problem behavior.

“It’s a brain hemorrhage and many people don’t regain full cognitive function. They have memory loss and problem behaviors and at times engage in abusive behavior,” says Wolff, director of the Roger C. Lipitz Center for Integrated Health Care at Johns Hopkins Bloomberg School of Public Health in Baltimore.

If the behavior is relatively recent, experts look at medication and dosage, pain or a new health issue such as a urinary tract infection. Research published this year in the medical journal Movement Disorders details aggressive behaviors from those coping with Parkinson’s disease and the need to create interventions for caregivers.

A pattern of abuse

But if the problematic behavior is well-ingrained, it’s even more complicated, the experts say.

Kathleen* tearfully talks about a situation she says is getting worse.

“He’s always been abusive,” she says of her 80-year-old father. “He used to punch and hit us all the time and my mother as well.”

Kathleen, 48, was born in Vietnam and came to the U.S. as a 1-year-old.

“I have very Americanized beliefs, but I hold dear some traditional values,” she says. One Asian value, though, has been ingrained since childhood: “You don’t put your parents in nursing homes.”

Her father, a retired physician diagnosed with diabetes, has lived with her and her husband and two children (ages 16 and 7) in their Tustin, California, home since 2018. Her parents separated more than 30 years ago. Kathleen says her two younger siblings are “emotionally traumatized,” and her father is causing strain in her marriage. One of her children is battling depression.

Clinical psychologist Sara Qualls describes such circumstances as a “long-term pattern of care recipients who have been abusive to family members throughout adulthood and now they’ve aged and need to receive care, but their pattern is to be abusive.”

“I’ve worked with caregivers who have been abused historically by the recipient who have managed to provide the care but often it’s inappropriate. Often it’s re-abusing the caregiver,” says Qualls, a professor of aging studies and psychology at the University of Colorado in Colorado Springs.

“If a caregiver is in a terrible situation and feels trapped in providing care to a person who is abusive and always has been, it needs to be shifted in terms of the care structure,” she says. “Usually, I help the caregiver think through, ‘What if you didn’t exist?’ Siblings have set a boundary for a reason. They’re accepting this assignment without reviewing their own boundaries. So often, the caregiver feels trapped by some rules in the caregiver’s head.”

Codependency and toxicity

Despite a toxic relationship, sometimes there’s a codependency involved, says Suzette Abend, a licensed clinical social worker in Long Beach, California.

Many care recipients drink, which she says “fuels the flames” of aggression and vitriol. Caregivers buy the alcohol because they fear what will happen if they don’t. And, she says, sometimes caregivers are financially dependent on the care recipient’s income.

“The adult child is living in the care recipient’s home and does not have a substantial enough income to live on their own. They’re typically unemployed and themselves could be on Social Security,” she says.

Elder law attorney Stephanie Townsend Allala of El Paso, Texas, says she’s very familiar with the dynamic.

“It’s the person who does the most for you and cares for you — that person is the one that takes the brunt of the abuse,” she says. “Whatever bile or anger has been saved up over a lifetime, something starts spilling out to the nearest person. When people start to lose the ability to hear well, talk and speak and communicate their wishes, they resort to physicality.”

Townsend Allala says, “The law doesn’t say because you have dementia you can’t be charged with a crime, but often it’s the element of intent that you’re not able to prove in a dementia case.”

‘This is the dementia talking’

Rob,* 57, of Manor, Texas, is caregiver for both his parents and his partner, in addition to working full-time at a nonprofit and at a part-time job as well.

Although his parents — both in their mid-80s and with health conditions but who can live independently with his oversight — haven’t expressed aggressive tendencies, Rob says his partner of 24 years has had a personality change because of early onset dementia diagnosed about five years ago.

“When he’s very tired, he goes into fight-or-flight mode. His base instinct is to be very argumentative. Many things become my fault,” Rob says of his 60-year-old partner. “At first, I took it very personally. But then, you start seeing a pattern and this is the dementia talking. It’s not me.”

Christopher’s caregiving “break” is a job. He works two weekend nights at a brewery and pays a neighbor to check in on his mother while he’s at work. He says having his mom live with him has helped him gain valuable tools to let go of some of the anger he has felt toward her. Still, he takes every day as it comes.

“I really don’t know how much longer I can continue to do this,” Christopher says. “It’s almost beyond what I’m capable of.”

*For privacy, last names have not been used.

Experts Offer Tips to Deescalate an Aggressive Situation

Kim Barnes, cofounder of Parenting Aging Parents, online community network

Barnes suggests diversionary tactics, such as asking the care recipient for help with a task like knitting or sewing or looking for a specific photo in a family album to change the subject. They’ll likely forget about the argument.

Pedro Carbajal-Madrid, clinical director at Independence at Home, a program that supports older adults with no-cost programs and resource referrals

“Number 1 is ‘Don’t challenge the care receiver.’ ”

He urges caregivers to “become aware of your own process. Stay calm as much as possible. Lower your voice and do not engage, even if the behavior coming at you is upsetting.”

Brian Carpenter, professor of psychological and brain sciences at Washington University in St. Louis

The stage of the disease will affect a caregiver’s actions, he says. In early stages, it’s possible to have candid conversations with the care recipient about acceptable and unacceptable behavior — what you can and cannot say to me. But in later stages, end the conversation. “Walk out of the room. Try not to get into it with people.” He also advises caregivers to contact their local Alzheimer’s Association for support groups.

%{postComment}%