A new, national survey sheds light on the difficulties felt by America’s Alzheimer’s disease (AD) caregivers. Results from a survey of 524 non-professional AD caregivers illustrate that memory loss and confusion, which are cognitive symptoms, in addition to personal safety are the greatest concerns related to the progression of their loved one’s AD. In fact, 67 percent of AD caregivers surveyed said changes in cognitive symptoms were among their main concerns. The survey was conducted by Harris Interactive in September 2010 for Eisai Inc. and Pfizer Inc. in partnership with the Alzheimer’s Foundation of America (AFA).
As AD—a progressive brain disease typically characterized by three stages: mild, moderate and severe—changes over time, caregivers and their healthcare professionals may wish to regularly discuss modifications in lifestyle and treatment. According to the survey, the majority of Alzheimer’s caregivers are proactive participants in the dialogue and decision-making around their loved one’s disease, and 75 percent of those surveyed were either “satisfied” or “very satisfied” with the communication they have with their loved one’s health care professional. For the remaining 25 percent who are either “somewhat” or “not at all satisfied,” there may be room for improvement in this dialogue.
“These survey results reveal that changes in cognition as the disease progresses were an important concern among caregivers,” said Eric J. Hall, president and CEO of AFA. “We encourage caregivers and health care professionals to discuss these changes and any others during regular visits.”
“AD 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,” said Barry W. Rovner, MD, director of the Division of Geriatric Psychiatry and professor in the departments of Neurology and Psychiatry at Thomas Jefferson University in Philadelphia. “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.”
Key Survey Findings
Following are results illustrating the difficulties faced by Alzheimer’s caregivers, concerns about disease progression and discussions with health care professionals, highlighting differences between men and women. Of note, 173 men and 351 women were surveyed, which reflects the overall unpaid AD caregiver population in which caregivers are more likely to be female.
Difficulties Faced by Caregivers:
- 55 percent of AD caregivers surveyed said caring for their loved one has taken a toll on their own health
- Women surveyed were more likely to worry “all the time” compared to men (13 percent versus 3 percent). Also, women were less likely than men to feel that they have enough support to take care of themselves and their own needs (60 percent versus 76 percent)
- 60 percent of AD caregivers surveyed said they feel overwhelmed
- Women surveyed were more likely to consider “maintaining relationships with family or friends” as a challenge compared to men (47 percent versus 31 percent)
- 84 percent of caregivers of loved ones with severe AD surveyed said caregiving frequently stops them from participating in activities that they enjoy, which is more than caregivers of loved ones with mild (67 percent) and moderate (68 percent) AD
Concerns About Disease Progression:
- The three greatest caregiver concerns about the progression of their loved one’s AD were memory loss (41 percent), personal safety (33 percent) and confusion (27 percent)
- 67 percent of AD caregivers surveyed named at least one change in cognitive symptoms as a main concern about the progression of their loved one’s AD
- Men surveyed were more likely to be concerned about memory loss compared to women (50 percent versus 37 percent)
Discussions with Health Care Professionals:
- Men surveyed were more likely to be satisfied with communication with their health care professional compared to women [84 percent versus 70 percent]. Also, men were more likely to regularly discuss options for information or support (26 percent versus 14 percent)
- 53 percent of AD caregivers surveyed who said they were not very involved (somewhat or not at all involved) in these interactions were dissatisfied with their loved one’s treatment, as compared with 31 percent who said they were engaged
As a caregiver, especially when caring for a loved one with AD, you need to take steps to look out for not only his or her well-being, but your own well-being as well, to avoid caregiver burnout and the health issues that can cause. Read our articles on Alzheimer’s or ask question of our Alzheimer’s expert.