Published on March 20, 2020
Distress is common among caregivers.
WHEN AN ADULT OR CHILD is diagnosed with cancer, family members and friends can find themselves suddenly immersed in scheduling and attending doctors’ appointments, managing medications, providing physical care and dealing with insurers—all while being a shoulder to cry on.
This caregiving can be rewarding, but it’s rarely easy. Studies show that more than half of these caregivers report symptoms of significant depression or anxiety. Caregiving can also raise spiritual concerns, lead to financial problems, limit access to friends and other social support, and affect a caregiver’s physical health.
Sometimes, a caregiver’s distress is noticed by a member of the patient’s cancer care team, who may make a referral to a mental health professional. “Unfortunately, that doesn’t happen as often as it should,” says Kimberly Matthews, a licensed clinical professional counselor at the Cancer Wellness Center in Northbrook, Illinois.
Each year, roughly 3 million people in the U.S. act as caregivers to their relatives, friends or partners. But only about one in four cancer caregivers access the support they need when experiencing distress, according to Allison Applebaum, a psychologist at Memorial Sloan Kettering Cancer Center in New York City.
Applebaum and her colleagues are searching for ways to change that. As part of this effort, they interviewed caregivers waiting for loved ones at a hospital outpatient surgery center about their experiences and asked them to complete a questionnaire about caregiving and distress. Their study, published in the March 2019 Oncology Nursing Forum, reports that 16 of the 17 caregivers they approached asked for additional information or a referral after completing the questionnaire. Applebaum is now conducting a larger study focused on distress screening for caregivers, with targeted referrals based on the screening results. “The long-term goal,” she says, “is to integrate distress screening into [our] standard practice.”
Self-Care for Caregivers
Psychologists, social workers and support groups can help caregivers process emotions.
It can be difficult for caregivers to know when they may need support—or how to get it when they do.
Allison Applebaum, a psychologist at Memorial Sloan Kettering Cancer Center in New York City, suggests caregivers look for support at the cancer center where their loved one is being treated. Some centers have psychologists and social workers on staff who see caregivers as well as patients. Others may offer referrals to mental health professionals who have experience working with cancer caregivers or who run in-person caregiver support groups.
Support groups can help normalize the caregiving experience, says Kimberly Matthews, a licensed clinical professional counselor at the Cancer Wellness Center in Northbrook, Illinois. They also provide a place for caregivers to talk about their concerns or learn how they can benefit from setting up support systems for meals or rides. “Sometimes the patient forgets how challenging this is for family members,” Matthews says.
Caregivers with spiritual concerns may benefit from talking with a chaplain or therapist, says Matthews. “Research shows that the people who feel like successful caregivers are those who find some meaning or peace in the process,” she says.
Researchers are also studying ways to help caregivers. For example, Applebaum’s team published a study in 2018 showing that 22 of the 31 caregivers who completed eight weeks of individual, in-person cognitive behavioral therapy to reduce negative thinking and worrying reported feeling less anxious and depressed and had less negative thinking. The caregivers said the therapy also made them feel better able to handle challenges related to their caregiving.
Nicole Amoyal Pensak, a clinical psychologist at Jersey Shore University Medical Center in Neptune, New Jersey, is developing an online program to help alleviate caregiver distress. The program’s nine sessions, each 20 minutes or less, address topics such as stress and the mind-body connection, coping with uncertainty and improving relationships. The program includes three-minute relaxation, gratitude and communication exercises. Preliminary findings, reported in March 2019 at the Annual Conference for the Society for Behavioral Medicine, show that caregivers who used the online program reported feeling less stress.
Amoyal Pensak says caregivers need to know it’s OK to ask for help. “The better they take care of themselves,” she says, “the better they’ll be able to take care of others.”