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Survey identifies memory loss, confusion, personal safety are top concerns for AD caregivers
Woodcliff Lake, New Jersey | Saturday, October 16, 2010, 10:00 Hrs  [IST]

Results announced from a national survey of Alzheimer's disease (AD) caregivers found 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 per cent of AD caregivers surveyed said changes in cognitive symptoms were among their main concerns.  The survey of 524 non-professional caregivers, which was conducted by Harris Interactive in September 2010 for Eisai Inc. and Pfizer Inc. in partnership with the Alzheimer's Foundation of America (AFA), provides insight into the current state of caring for a loved one with AD in the United States.  

"These survey results reveal that changes in cognition as the disease progresses were an important concern among caregivers," said Eric J. Hall, president and chief executive officer of AFA.  "We encourage caregivers and health care professionals to discuss these changes and any others during regular visits."  

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 AD caregivers are proactive participants in the dialogue and decision-making around their loved one's disease, and 75 per cent 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 per cent (who are either "somewhat" or "not at all satisfied"), there may be room for improvement in this dialogue.  

"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, M.D., director of the Division of Geriatric Psychiatry and professor in the departments of Neurology and Psychiatry at Thomas Jefferson University, 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."

Following are results illustrating the difficulties faced by caregivers, concerns about disease progression and discussions with health care professionals, highlighting differences between men and women.  Of note, 173 males and 351 females were surveyed, which is reflective of the overall unpaid AD caregiver population, in which caregivers are more likely to be female.

55 per cent 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 per cent versus 3 per cent].  Also, women were less likely than men to feel that they have enough support to take care of themselves and their own needs [60 per cent versus 76 per cent]; 60 per cent 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 per cent versus 31 per cent]; 84 per cent 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 per cent) and moderate (68 per cent) AD


The three greatest caregiver concerns about the progression of their loved  one's AD were memory loss (41 per cent), personal safety (33 per cent) and confusion (27 per cent); 67 per cent 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 per cent versus 37 per cent].

Men surveyed were more likely to be satisfied with communication with their health care professional compared to women [84 per cent versus 70 per cent].  Also, men were more likely to regularly discuss options for information or support [26 per cent versus 14 per cent]; 53 per cent 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 per cent who said they were engaged

The survey was conducted by Harris Interactive in September 2010 for Eisai Inc. and Pfizer Inc. in partnership with AFA.  A total of 524 non-professional adult AD caregivers, including those of mild, moderate and severe AD patients, were surveyed.  Caregivers were asked to classify the stage of their loved one's AD, as identified by their loved one's health care professional.  Respondents for this survey were selected from among those who have agreed to participate in Harris Interactive surveys.  The data have been weighted to reflect the composition of the US non-professional AD caregiver population.  Because the sample is based on those who agreed to participate in the Harris Interactive panel, no estimates of theoretical sampling error can be calculated.  A full methodology is available.  Funding was provided by Eisai Inc. and Pfizer Inc.  

The Alzheimer's Foundation of America, based in New York, is a non-profit organization that unites more than 1,400 member organizations nationwide with the goal of providing optimal care and services to individuals confronting dementia and to their caregivers and families.  

Eisai Inc. was established in 1995 and is ranked among the top 20 U.S. pharmaceutical companies (based on retail sales).  The company began marketing its first product in the United States in 1997 and has rapidly grown to become a fully integrated pharmaceutical business with fiscal year 2009 (year ended March 31, 2010) sales of approximately $3.9 billion.  

Harris Interactive is one of the world's leading custom market research firms, leveraging research, technology and business acumen to transform relevant insight into actionable foresight. 

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