The stress of caring for a family member with multiple sclerosis (MS) or another neurodegenerative disease may directly affect the quality of care, according to a study showing that poor caregiver mental health causes higher mortality rates among the patients they care for.
The study, published in the journal Proceedings of the National Academy of Sciences, stresses that any attempts to improve the lives of people with such conditions must take caregiver health into account.
“Our finding of the strong relationship between patient survival and caregiver mental health underscores the profound intertwining of the lives and well-being of caregivers and patients as they engage in one of life’s most challenging and intimate relationships,” Robert Levenson, the study’s senior author and psychology professor at University of California, Berkeley, said in a university news release.
In contrast to earlier research, which often looked at patients with a particular diagnosis, the study, “Poor caregiver mental health predicts mortality of patients with neurodegenerative disease,” included 176 patient-caregiver pairs with a variety of neurodegenerative diseases such as MS, Alzheimer’s, Parkinson’s and Huntington’s, among others.
Of the pairs analyzed, 85 percent were spouses, 8 percent were adult children and 6 percent were siblings.
Researchers noted that patients of caregivers with depression, anxiety and other mental issues died an average 14 months earlier than patients cared by family members in good mental health; in total, 76 patients died during the study.
The research team believes that this is the first time scientists link caregiver mental health to patient mortality.
“These findings make a compelling case that helping preserve the mental health of caregivers may also help the patients in their care,” said Brett Ford, the study’s co-lead author and now assistant professor in psychology at Canada’s University of Toronto.
Although researchers found a link, they said the data reveals nothing about causality. They couldn’t definitively say that patients died sooner because of the poor mental state of their caregivers, or that the caregivers’ mental health became poor as a result of caregiving stress.
Instead, the study “highlights the mutual influence both parties’ mental and physical states have on one another, and the extraordinarily high stakes that are involved,” said Levenson.
The link between caregiver mental health and patient mortality cannot be explained by patient-related factors such as diagnosis, sex, age, dementia severity or patient mental health. Nor did other caregiver factors such as physical health affect the relationship.
“We were able to meet and speak with a number of caregivers, many of whom talked about the challenges of watching their spouse or loved one slowly lose their sense of self and their ability to live independently,” said Sandy Lwi, another co-lead author of the study.
Earlier research has shown that poor caregiver mental health lowers the quality of care, and researchers speculated that the higher observed mortality could be linked to factors such as a lower awareness of patient health changes, poorer medication compliance or missed medical appointments. It could even lead to abuse, researchers said.
It could, however, also hurt the relationship between a caregiver and patient — a factor known to trigger worse health outcomes. So-called emotion contagion, in which patients absorb emotional responses in the caregiver, may also be at play.
To get a better insight into what factors really determine health outcomes, Levenson and his team will continue following surviving caregiver-patient pairs, placing a particular focus on relationship dynamics.
“Family members and others who provide critically needed care for these patients do heroic and extremely challenging work,” Levenson said, adding that “soaring rates of dementia and other neurodegenerative diseases constitute one of the most pressing public health challenges of the present era, and this will become even more challenging as the population ages.”