Caregivers and loved ones of individuals with Alzheimer’s disease are most concerned about the patients personal safety, loss of memory and confusion – memory loss and confusion are examples of cognitive symptoms, which worried over two-thirds of caregivers the most, according to a national survey of non-professional caregivers involving 524 participants. The Harris Interactive Survey was carried out last month on behalf of AFA (Alzheimer’s Foundation of America), Eisai Inc., and Pfizer (the last two being pharmaceutical companies).

Eric J. Hall, president and CEO of AFA, said:

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.

Alzheimer’s disease is a progressive neurologic brain disease which eventually leads to permanent loss of neurons and cognitive/intellectual abilities, including reasoning and memory. As the disease progresses the patient’s abilities to function socially or occupationally become so undermined that they need to be looked after. Typically, there are three stages to the disease – mild, moderate and severe. Caregivers and doctors often need to consult regarding the patient’s lifestyle and treatment options.

The survey revealed that approximately three-quarters of caregivers are either “satisfied” or “very satisfied” with the therapy provided by health care professionals for their loved one. The rest of respondents who rated this as either “not at all satisfied” or “somewhat satisfied” reveal a need for improvement, the survey authors wrote.

Barry W. Rovner, M.D., director of the Division of Geriatric Psychiatry and professor in the departments of Neurology and Psychiatry at Thomas Jefferson University , Philadelphia, said:

AD (Alzheimer’s disease) caregivers are typically the first to notice when their loved one’s symptoms are becoming worse and whether the disease may be progressing to the next stage, which is why caregivers are essential partners in disease management discussions. In the face of this devastating chronic and progressive disease, it is important for AD caregivers to know about the available educational resources, support networks and treatments in order to enhance these discussions at all stages of the disease.

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. 173 males and 351 female caregivers contributed towards the survey. There were some differences in priorities reported by male and female caregivers.

Highlighted below are some of the difficulties caregivers have to cope with:

  • 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 ones
  • 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

Source: Alzheimer’s Foundation of America

Written by Christian Nordqvist