Illness Representations Among First-Degree Relatives of People With Alzheimer Disease

University of Michigan, Ann Arbor, Michigan, United States
Alzheimer Disease and Associated Disorders (Impact Factor: 2.44). 07/2000; 14(3):129-136,Discussion 127-8. DOI: 10.1097/00002093-200007000-00003
Source: PubMed


The purpose of this study was to examine attitudes, beliefs, and experiences regarding Alzheimer disease (AD) among patients' first-degree relatives, a group that is at increased AD risk and often involved in health care decision-making for affected family members. Children and siblings (N = 203; age range, 30-92 years; 75% female) of people with AD completed a questionnaire (response rate, 90%) that assessed mental representations of AD, including knowledge, cause and treatment beliefs, distress, and perceived threat. In general, relatives were knowledgeable about AD, had an accurate sense of their disease risk, and endorsed etiologically significant factors as causes. Nonetheless, many participants held misconceptions about AD (e.g., most cases are hereditary) and what may be unrealistic expectations for future treatment developments. Levels of perceived distress and threat were generally high and associated with female gender and younger age. AD represented the foremost health concern of approximately one third of first-degree relatives. Health education efforts are needed to address misconceptions about AD genetics and to disseminate information about the availability of effective treatments. Further research on illness representations is needed to better understand coping and decision-making among those at risk for AD.

25 Reads
  • Source
    • "Alternative causes suggested were ageing, lifestyle, environment, life events and hereditary factors. Other studies have reported problems in the brain, genetic factors and ageing as the main causal factors identified by caregivers of people with dementia (Glidewell et al., 2012;Hinton & Levkoff, 1999;Roberts & Connell, 2000). Similarly, people with dementia attribute the cause of their dementia to ageing, life events, life stress, environmental factors and hereditary factors (Clare, Goater, & Woods, 2006;Harman & Clare, 2006;Langdon et al., 2007;Matchwick, Domone, Leroi, & Simpson, 2014). "
    [Show abstract] [Hide abstract]
    ABSTRACT: Objectives: Illness representations shape responses to illness experienced by the self or by others. The illness representations held by family members of those with long-term conditions such as dementia influence their understanding of what is happening to the person and how they respond and provide support. The aim of this study is to explore components of illness representations (label, cause, control and timeline) in caregivers of people with dementia. Method: This was an exploratory study; the data reported came from the Memory Impairment and Dementia Awareness Study (MIDAS). Data from semi-structured interviews with 50 caregivers of people with dementia were analysed using content analysis. Results: The majority of caregivers gave accounts that appeared to endorse a medical/diagnostic label, although many used different terms interchangeably. Caregivers differentiated between direct causes and contributory factors, but the predominant explanation was that dementia had a biological cause. Other perceived causes were hereditary factors, ageing, lifestyle, life events and environmental factors. A limited number of caregivers were able to identify things that people with dementia could do to help manage the condition, while others thought nothing could be done. There were varying views about the efficacy of medication. In terms of timeline, there was considerable uncertainty about how dementia would progress over time. Conclusion: The extent of uncertainty about the cause, timeline and controllability of dementia indicated that caregivers need information on these areas. Tailored information and support taking account of caregivers' existing representations may be most beneficial.
    Full-text · Article · Jan 2016 · Aging and Mental Health
  • Source
    • "Studies have reported that the way AD and other dementias are understood by Asian Americans is deviated from the biomedical perspective. Although normalization of memory loss exists across different racial and ethnic groups (Barrett, Haley, Harrell, & Powers, 1997; Roberts & Connell, 2000), literature suggests that the view is more prevalent in ethnic minorities, including Asian Americans. For example, Chinese, Japanese, Korean, and Vietnamese Americans frequently consider dementia, including AD, as a part of normal aging process, rather than a disease; and they often interpret dementia as a result of emotional trauma, social relationship problems, troubling lifetime experience, and social factors such as physical/social inactivity, rather than a biomedically defined disease ( "
    [Show abstract] [Hide abstract]
    ABSTRACT: Abstract The present study examined recognition of Alzheimer's Disease symptoms among Korean Americans (KAs) and assessed psychometric properties of the Alzheimer's Disease Symptom Recognition Scale (ADSRS). A cross-sectional survey collected data from 209 KAs, using a self-administered questionnaire. Results show that KAs recognized symptoms related to memory and cognitive functioning well, but had very limited recognition of neuropsychiatric symptoms. Psychometric analysis of ADSRS identified four factors in their symptom recognition. Findings suggest a need to raise awareness of Alzheimer's symptoms over the course of the disease. Assessment using ADSRS can be incorporated in communication in the practice context and public outreach.
    Full-text · Article · Jan 2015 · Journal of Gerontological Social Work
  • Source
    • "The person's own experiences of AD could also make them perceive AD more seriously. Sex is not an independent factor, but is one of the proximity indicators to AD, as women often care for parents with dementia (11). "
    [Show abstract] [Hide abstract]
    ABSTRACT: Anticipatory dementia is related to anxiety, which is a clinical predictor of early conversion to Alzheimer's disease. The Fear of Alzheimer's Disease Scale (FADS) is a reliable and valid instrument to address anticipatory dementia. The aim of the present investigation was to develop the Korean version of the Fear of Alzheimer's Disease Scale (K-FADS) and to verify its reliability and validity. We developed the K-FADS to consist of 30 items with total scores ranging from 0 to 120, as in the original FADS. One hundred eight healthy volunteer participants, drawn from 3 different university hospitals, were evaluated. The K-FADS revealed good reliability (Cronbach α=0.96) and good validity as compared to the Korean version of the State-Trait Anxiety Inventory Form (r=0.242, P=0.013). Test-retest reliability was excellent, as the intra-class correlation coefficient comparing the retest to test was 0.98 (95% confidence interval, 0.96-0.99). Our results show that the K-FADS is a suitable and valuable scale to assess anticipatory dementia in elderly Koreans. Graphical Abstract
    Full-text · Article · Mar 2014 · Journal of Korean medical science
Show more