Apart from the strain of the situation itself, the primary caregiver of a stroke victim suffers the most stress from unhelpful family members, according to new research by Northwestern Medicine.
The study reveals — from the point of view of the primary caregiver — that it is the lack of understanding and tangible help from friends and relatives that is responsible for the greatest amount of stress to the caregiver’s own health and sense of well-being.
This concern actually ranked higher than the caregivers’ reported feelings of depression and anxiety due to the more obvious stresses associated with caregiving, such as trying to take care of themselves and their families alongside the demands of the situation.
The research, which focused on 58 caregivers of stroke survivors, was further able to pinpoint the 15 most common problems that caregivers face. Specifically the highest concern on the list was having a problem with family and friends who criticized, ignored or didn’t help caregivers.
The second most stressful reported problem was the difficulty caregivers experienced in trying to sustain themselves and their families, along with social isolation and changes in their relationships with the stroke survivor.
“Often families aren’t really understanding, or families might blame a caregiver for not doing more than they’re doing,” said Rosemarie King, the study’s lead investigator and research professor in physical medicine and rehabilitation at Northwestern University Feinberg School of Medicine.
“We had one caregiver in our study ask if we could send her a write-up that she could just hand to family members to explain how harassed and stressed caregivers are.”
“Caregivers face much anxiety about managing their own finances and taking care of their own emotions during such a difficult time,” King said. “The least stressful area was patient-related problems. Not that those problems aren’t stressful, they were just not as stressful for this group of caregivers.”
The findings suggest that these often-overlooked concerns for caregivers are a major source of stress. The results are very important, King noted, because other studies, mostly focused on Alzheimer’s caregivers, reveal that depression and stress seem to be associated with increased mortality.
King offers the following helpful reminders for friends and family in order to ease caregivers’ stress: encourage online or in-person caregiver support groups; invite the caregiver to join you at a social event; ask the caregiver how she is doing and express concern for her well-being; be a sounding board; let the caregiver bounce ideas off of you; stay with the patient for a few hours, so the caregiver can get out of the house; offer to help with specific everyday tasks, such as shopping for groceries for the caregiver or bringing prepared meals to the home.
The findings were presented at the Association of Rehabilitation Nurses annual educational conference in Orlando, FL.
Source: Northwestern University