The Surprising Link Between Cancer Caregiver Burden and Patient Self Image

In some ways, it’s the down side of optimism: A recent study has found that older people sometimes think they are capable of more activity than their caregivers say they are.

This disconnect can lead to increased burden for caregivers. Researchers from City of Hope National Medical Center in Duarte, California, found that patients view themselves as being more able than their caregivers thought.

“In daily practice, we sometimes see a disconnect between what the patient perceives their general health and abilities to be in comparison to what the caregiver thinks,” Arti Hurria. M.D., director of Cancer and Aging Research Program and one of the authors on the study, said in a press release. “We wanted to see whether this disconnect impacted caregiver burden.”

The study examined 100 patients, aged 65 to 91, of which 70 percent had advanced disease. The most common cancers were lymphoma, breast cancer and gastrointestinal cancers.

Caregivers were mostly women (73 percent) and either the spouse of the patient (68 percent) or an adult child (18 percent). They ranged from 28 to 85 years old.

Each patient and caregiver independently assessed patient function, comorbidity, nutrition, social activity, social support and mental health. Caregivers also completed the Caregiver Strain Index (CSI), which is a 13-question tool that can help health care workers quickly identify if there are potential caregiving concerns.

Sixty percent of patients reported requiring help with activities of daily living. Most patients had good social support and mental health.

Caregivers rated patients as having poorer physical function and mental health. They also reported that patients required more social support. Based on CSI scores, three‐quarters of caregivers experienced some caregiver burden.

Caregiver burden is commonly perceived as a chronic stressor. Caregivers often experience negative psychological, behavioral and physiological effects on their daily lives and health, according to the National Cancer Institute.

Researchers said that only the disparity in the assessment of physical function was associated with greater caregiver burden.

First author, Tina Hsu, M.D., offered two possible explanations for this.

“One is that older adults with cancer either don’t appreciate how much help they require or, more likely, they are able preserve their sense of independence and dignity through a perception that they feel they can do more than they really can,” she said. “Alternatively, it is possible that caregivers who are more stressed out perceive their loved one to require more help than they actually do need. Most likely, the truth of how much help the patient actually needs lies somewhere between what patients and caregivers report.”

The researchers plan to explore factors associated with caregiver burden in this population.

They also advise health care teams to keep lines of communication open and check for caregiver burden in caregivers who report providing more help with instrumental activities of daily living than patients themselves.