Article

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

ABSTRACT

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.

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    • "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). "
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    Full-text · Article · Jan 2016 · Aging and Mental Health
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    • "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 ( "
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    • "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). "
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