The biggest cause of stress for people who care for an aging loved one or a loved one with an illness or disability may not be worrying about the affected family member. Rather, surprising new research from Northwestern Medicine shows that a lack of understanding and help from friends and relatives causes the most stress and the greatest threat to a caregiver’s own health and well-being.

These and other stressors, like simply trying to take care of themselves and their families along with the demands of caregiving can cause caregivers to report signs of anxiety and depression.

The findings were presented at the Association of Rehabilitation Nurses annual educational conference.

The study of 58 caregivers of stroke survivors alone identified 15 types of common problems caregivers face. The most stressful problems concerned friends and family, who criticize, ignore or don’t help caregivers.

“Often families don’t really understand, 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.”

The next most stressful problem category was the difficulty caregivers experienced in trying to sustain themselves and their families. Social isolation and changes in their relationship with the one their caring for also top caregivers’ concerns.

“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 study suggests that these often-overlooked concerns for caregivers are a major source of stress. The results are critical, King noted, because other studies, mostly of Alzheimer’s caregivers, show stress and depression seem to be associated with increased mortality.

King offers a few tips for friends and family that may ease caregiver 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 loved one 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.

Source: Erin White, Northwestern University

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