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

Serious Mental Illness Treatment Research and Evaluation Center, Ann Arbor VA Health Services Research and Development, Michigan, USA.
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.

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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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    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.
    Journal of Gerontological Social Work 01/2015; 58(3). DOI:10.1080/01634372.2015.1005785
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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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    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
    Journal of Korean medical science 03/2014; 29(3):411-5. DOI:10.3346/jkms.2014.29.3.411 · 1.27 Impact Factor
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    • "One possible explanation for the lack of consensus in the above findings is the means by which dementia anxiety is measured or assessed. For example, all previous studies used only a single item to measure dementia anxiety, wherein participants responded by either providing an answer on a Likert scale (Roberts and Connell, 2000; Cutler and Hodgson, 2001; Werner, 2002) or indicating yes/no (Yeo et al., 2007). While this is a convenient way to measure dementia anxiety, the reliability and validity of single item scales is questionable. "
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    ABSTRACT: ABSTRACTBackground: Although caring for individuals with dementia is known to result in increased burden and depression among caregivers, little research has investigated caregiver's anxiety or concern about eventually developing dementia themselves (i.e. dementia anxiety). Existing research reports mixed findings regarding variables (e.g. relationship to care recipient, sex, education) that predict dementia anxiety among caregivers and non-caregivers. Potential relationships among burden, depression and dementia anxiety have not been extensively examined. The present study explored caregiver and care recipient factors as predictors of dementia anxiety in older adult caregivers.Methods: A sample of 116 older adult caregivers answered demographic/background questions and completed a series of self-report measures assessing dementia anxiety, caregiver burden, depression, and the physical disability of the care recipient.Results: The majority of caregivers were female, Caucasian, and reported caring for a spouse. Analyses revealed that background variables were generally not related to dementia anxiety, while depression and caregiver burden were significantly associated. Using linear regression analysis, it was found that a diagnosis of dementia in the care recipient and caregiver depression were both significant predictors of caregiver dementia anxiety.Conclusion: Health care providers should be aware that dementia anxiety is associated with caring for individuals with dementia as well as with depression. Dementia anxiety may place additional strain on caregivers of individuals who have dementia and are suffering from depression and thus should be the focus of future research.
    International Psychogeriatrics 03/2011; 23(6):1-7. DOI:10.1017/S1041610211000299 · 1.93 Impact Factor
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