Tracy Cram Perkins understands the toll of caregiving. For more than 16 years, she looked after her parents, an uncle, and an aunt—all battling different forms of dementia. Her mother experienced postoperative cognitive decline following anesthesia, her father was diagnosed with Alzheimer's disease, an aunt had vascular dementia, and an uncle had early-onset Alzheimer's. Her relatives had other chronic illnesses, too, including diabetes, kidney disease, cancer, and heart disease. They all eventually needed wheelchairs, further intensifying the demands on her. “Like many caregivers, I struggled with depression, anxiety, and guilt,” says Perkins, author of Dementia Home Care: How to Prepare Before, During, and After.
The stress of caring for her dad and uncle and working part-time for her husband's business in the electrical industry proved too much. “It became overwhelming at times, and I could feel myself shutting down,” says Perkins, who is 60 and lives in Seattle. “Knowing how to say ‘when’ and ask for help is not failure. Failure is not asking for help.” She notes the harm, including injury, illness, and even death, that can come to caregivers who don't seek or accept help.
Carla Preyer took care of her husband, Patrick, for 10 years after he was diagnosed with Lewy body dementia. She avoided burnout thanks to the support of other wives going through similar experiences. “It was really hard emotionally and physically when Patrick was paranoid, agitated, and hallucinating,” says 63-year-old Preyer, who lives in Sacramento. She found a Lewy body dementia support group for spouses on Facebook, which was invaluable. “I'm not sure how I would have made it without their help, support, and friendship.”
Understand the Toll
A 2015 report revealed that 11 percent of caregivers reported a decline in their physical health due to caregiving responsibilities, according to research by the National Alliance for Caregiving and AARP. The decline was closely tied to the number of daily activities like dressing, feeding, and toileting they managed for their loved ones. The health of caregivers who handle more of these activities declined by 41 percent compared with 16 percent for those not managing any activities.
The phenomenon is underreported, but burnout is an increasingly serious problem among caregivers, according to a 2023 survey conducted by AARP. The survey found that about half of the 1,001 participants reported heightened emotional stress, while 37 percent noted physical stress. Caregivers under 35 reported the highest levels of anxiety, and women experienced more emotional distress than men. Nearly four in 10 caregivers said they rarely or never feel relaxed.
The physical and emotional strain can have dire consequences, including depression, anxiety, a weakened immune system, weight gain, a higher risk of chronic diseases such as diabetes and heart disease, and problems with short-term memory and concentration, according to the Office on Women's Health in the U.S. Department of Health and Human Services.
One feature of burnout is prolonged emotional numbness, which is distinct from regular stress. “It's marked by feeling overwhelmed and disconnected, often leading to long-term health problems,” says Sudha Seshadri, MD, FAAN, director of the South Texas Alzheimer's Disease Research Center at UT Health San Antonio. “Burnout affects caregivers’ well-being,” she says. “And because it impairs caregivers’ physical and emotional abilities, it also can endanger their loved ones.”
Burnout also can resemble an extended period of depression, where numbness or panic sets in. Caregivers often can't identify it because they are consumed by their daily work, says Kristi Horner, a certified family peer-support specialist in Cleveland and founder of Courage to Caregivers, a nonprofit that supports unpaid family caregivers. Physical signs include exhaustion, fatigue, and sometimes pain and weakness, says Horner, 63, who was a long-distance caregiver for her brother, who had severe depression, anxiety, and obsessive-compulsive disorder. After gallbladder surgery in 2010, he was left with chronic, debilitating pain and was unable to manage his underlying mental illness. He died by suicide in 2014.
Release the Burden
Caregivers experiencing burnout may come to resent the people they're caring for, says Jerry Bishop, 63, chairman of the Well Spouse Association, whose wife, Cindy, was diagnosed with multiple sclerosis (MS) more than 30 years ago. “An extreme sign is when caregivers start thinking about harming themselves or others,” says Bishop, who lives in Wilmington, MA. “That needs immediate attention.”
In some cases, caregivers may become dispassionate and lack empathy for their loved ones. “Compassion fatigue is a normal response to managing an extreme experience, such as being a constant caregiver for someone,” says Horner, adding that it can result in indifference to the feelings and predicaments of the people they are caring for.
Any caregiver who is struggling emotionally or physically should seek help, advises Dr. Seshadri. She recommends meeting with a social worker or mental health professional, who can help process feelings of sadness, guilt, and frustration.
Caregiving for a loved one with a neurologic disease demands patience, resilience, and often a healthy dose of self-restraint, says Cait Donovan, 42, an acupuncturist in Little Falls, NJ, and host of Fried: The Burnout Podcast. “Maintaining a calm exterior is crucial,” says Donovan, whose grandmother had Lewy body dementia. “While loved ones, depending on the disease and its severity, may not fully understand situations, they still possess a remarkable sensitivity to their environment and emotions around them.”
To cope, caregivers develop personal strategies for survival. Perkins may yell in the shower to release her energy. Some count to 10 before responding or punch a pillow in private. Others swear. “Caregivers may need to let go of pent-up stress during moments of extreme pressure,” says Mary Lou Falcone, 79, author of I Didn't See It Coming, a book about taking care of her husband, Nicky Zann, who was diagnosed with Lewy body dementia in 2019. “As unorthodox as it may sound, finding a private space and yelling the f-word into a pillow provides a sense of release that ‘heck,’ ‘darn,’ or even ‘damn’ just doesn't deliver.”
A study by researchers at Ulster University in Northern Ireland published in Lingua in October 2022 showed that swearing helps people process and regulate intense emotions more effectively. The key is discretion, says Falcone, who lives in New York City. “Allowing such feelings of frustration to surface in private helps ensure that loved ones are shielded from the raw emotion of more difficult moments. Finding ways to release the pressure isn't just an indulgence—it's a necessity. And sometimes a well-timed, heartfelt outburst is exactly what the doctor ordered.”
Protect Your Mental Health
Five years after Horner's brother died, her son sustained a traumatic brain injury. She now looks after him and her 91-year-old father, who lives with them. She also visits her mother in an assisted living facility. The years of caring for her brother changed how she takes care of herself. “I used to be so fragile and vulnerable. I didn't know where to turn for help. I coped with my emotions through eating.” She now sets boundaries. For instance, in 2019, after her son was admitted to the hospital, Horner stood firm when a friend offered to bring cookies to the hospital. “I knew that having sweets around would trigger my unhealthy eating habits, so I asked her to bring a veggie tray or a bowl of oranges.”
To recharge, Bishop makes time for activities he loves, like camping with friends on the weekends. “It's good to step away and reset,” he says. He also knows the value of small, daily moments of self-care. “If you can take five minutes just to breathe or have coffee with a friend, do it. It helps.”
Have compassion for yourself, says Donovan. “Caregivers often push themselves relentlessly, with a harsh inner voice,” she says. “To heal, they must grant themselves grace and understand that needing a break doesn't diminish their love or commitment.” She recommends guided meditation, deep-breathing exercises, and reflective writing.
During her years of caregiving, Perkins found a support group, did breathing exercises, and discovered laughter yoga, which combines voluntary laughter with yogic breathing techniques. “Overcoming burnout was not easy, but these activities really helped.”
Find Other Caregivers
“Connecting with people who know the challenges you're going through is validating and comforting and reduces feelings of loneliness,” says Horner, who provides such support. Other caregivers can offer tips for managing time and dealing with health care systems or difficult emotions. “Caregivers can build a community that uplifts and sustains them during challenging days,” says Horner.
Falcone, who found strength from meeting others who were dealing with Lewy body dementia, agrees. “I'm typically not a joiner, but it truly helped talking to other people going through the same thing I was with my husband.”
Preyer says the small online support group of women her age who were caring for husbands with Lewy body dementia provided the most education about the disease and the best emotional support. “I would recommend joining a support group 2,000 percent.”
Bishop also has benefited from participating in and leading support groups for caregivers. “Talk to others facing the same challenges,” he says. His own group meets twice a month on videoconference and includes six to 10 members each meeting. “It's not always the same people, but that's okay. Just knowing you're not alone makes a huge difference.”
Access Respite Care
Regular, planned respite is crucial, says Jill Kagan, MPH, director of the ARCH National Respite Network and Resource Center. It allows caregivers to reconnect with loved ones and engage in activities that bring them joy and balance. ARCH partners with the federal Lifespan Respite Care Program, which provides grants to states to develop coordinated systems of respite care for all family caregivers, not just those caring for older adults. Not all states participate in the federal respite program due to limited funding. However, ARCH offers a National Respite Locator, helping caregivers find local respite resources. “Caregivers who use respite time experience better long-term outcomes,” says Kagan. “It needs to be regular and planned. If possible, caregivers should use it to do things by themselves unrelated to caregiving, not for running errands or other tasks.”
Listen to More
Hear our podcast interview with Mary Lou Falcone, who describes caring for her husband after his diagnosis of Lewy body dementia.
Recognize Burnout
Knowing when you're under too much stress allows you to get the help you need. These signs have been identified by the Well Spouse Association.
Physical symptoms
- Chronic fatigue
- Sleep disturbances
- Changes in appetite or weight
- Frequent illness
- Headaches or body aches
- Muscle pain or weakness
Emotional symptoms
- Anxiety or depression
- Feeling hopeless
- Feeling overwhelmed
- Irritability or anger
- Suicidal thoughts
Cognitive symptoms
- Forgetfulness
- Decision fatigue
Behavioral symptoms
- Withdrawal from activities or social situations
- Neglecting personal needs
- Increased use of substances
Resources for Caregivers
