Top Alzheimer’s & stroke caregivers’ concerns

American caregivers and loved ones of individuals with Alzheimer’s disease are most concerned about the patient’s personal safety, loss of memory and confusion according to a national survey of non-professional caregivers involving 524 participants.

“These survey results reveal the changes in cognition as the disease progresses were an important concern among caregivers. We encourage caregivers and health care professionals to discuss these changes and any others during regular visits,” said Eric Hall, president and chief executive officer of Alzheimer’s Foundation of America (AFA).

The survey revealed some of the problems caregivers have to cope with, as well as concerns and worries about how the disease progresses and is expected to progress, and discussions with health care professionals.

Difficulties caregivers have to cope with include:

• 55% say their caregiving duties have had a negative impact on their own health
• 13% of female caregivers tended to worry all the time, compared to just 3% of the male caregivers
• 60% of them said the whole thing was overwhelming
• 47% of female caregivers found maintaining relationships with friends and family “challenging”, compared to 31% of men
• 67% of caregivers of mild AD patients found their duties often stopped them from taking part in activities they liked, compared to 68% of those with a moderate AD patient and 84% of those caring for a loved one with severe AD.

Highlighted below are some of the worries caregivers have about the progression of Alzheimer’s disease:

• Caregivers worried the most about: 41% memory loss, 33% personal safety, 27% confusion.
• 67% mentioned at least one cognitive ability loss as their main worry when thinking about AD’s progression
• 50% of male caregivers were concerned and worried about memory loss, compare to 37% of the female ones

Highlighted below are some of the survey results regarding caregivers’ dealings and discussions with health care professionals:

• 84% of male caregivers were satisfied with their health care professional communications versus 70% of the females ones
• 26% of males asked the doctor about support information, compared to 14% of females
• 53% of all caregivers who were not very involved in liaising with a health care professional were not satisfied with their loved one’s treatment
• 31% of all caregivers who were very involved in liaising with a health care professional were not satisfied with their loved one’s treatment.

Family and friends cause most tension for caregivers
The biggest cause of stress for people who care for loved ones after a stroke may not be worrying about the affected family member.

Rather, surprising new research from Northwestern Medicine in the United States 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 American Association of Rehabilitation Nurses annual educational conference in Florida by Rosemarie King, the study’s lead investigator and research professor in physical medicine and rehabilitation at Northwestern University Feinberg School of Medicine.

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

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

Professor 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 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.