Patients with dementia or other neurodegenerative diseases may die earlier if family members who act as caregivers have poor mental health, according to a study published recently in the Proceedings of the National Academy of Sciences (PNAS).
While depression and anxiety among caregivers has been linked to a poorer quality of care, it is the first time that poor mental health was seen to influence mortality. This finding further highlights the importance of supporting family caregivers in their task.
“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, a professor of psychology at University of California, Berkeley and the study’s senior author, said in a news story written by Yasmin Anwar.
The study “Poor caregiver mental health predicts mortality of patients with neurodegenerative disease,” noted that patients cared for by family members with depression, anxiety and other mental health issues, died on average 14 months earlier compared to those tended by caregivers in good mental health. Also, when researchers took into account patient-related factors such as diagnosis, sex, age, dementia severity, caregiver physical health had no impact on 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 study co-lead author Brett Ford, who worked on the study as a PhD student at Berkeley, and is now an assistant professor in psychology at the University of Toronto.
The study included 176 patient-caregiver pairs, and 76 patients died during the study. In addition to Alzheimer’s disease, researchers included patients with frontotemporal dementia, primary progressive aphasia, corticobasal syndrome, and progressive supranuclear palsy.
The majority of caregivers were spouses, but adult children made up 8 percent and 7 percent were siblings.
‘High stakes’ are involved
Researchers underscored that the study is in no position to claim that depression among caregivers causes patients to die sooner. Instead, Levenson stated that “it highlights the mutual influence both parties’ mental and physical states have on one another, and the extraordinarily high stakes that are involved.”
But poor mental health can lead to poorer care, which has been shown in earlier research. So, the team speculated on ways it also might impact mortality. A lower awareness of patient health changes, poorer medication compliance, or missed medical appointments might cause events that shorten survival and a poor mental condition also could lead to abuse, researchers said.
The team considered the possibility that a poor mental state could negatively impact the social bond and emotional relationship between a patient and their caregiver, which research shows is linked to poorer health outcomes.
A phenomenon called emotion contagion, in which emotional responses in one partner can be absorbed by the other, also could be at play.
In a recent interview, Monica Moreno of the Alzheimer’s Association said that caregiving can be particularly heavy on dementia caregivers because of the long time a patient lives with the diagnosis. But experiencing the decline of a loved one also is a core issue, she said, a factor noted by study co-lead author Sandy Lwi.
“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 Lwi, who is a PhD student in psychology at Berkeley.
“Family members and others who provide critically needed care for these patients do heroic and extremely challenging work,” Levenson added, while noting that although caregivers often find the work rewarding, the stress involved takes its toll.
Studies show that up to 40 percent of dementia caregivers suffer from depression and have higher rates of anxiety, social isolation and frustration.
“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,” Levenson said.
To further contribute to improve the situation for both patients and caregivers, Levenson and his team will now focus on the remaining trial participants to better understand how the relationship dynamics impact caregiver mental health and, by extension, patient well-being.
The Alzheimer’s Association offers a range of resources to support caregivers of people with Alzheimer’s disease or other dementias.