Progressive neurological diseases, such as Alzheimer's dementia (AD), are prevalent and involve manifestations, such as changes in behavior and competence, believed to elicit stigma. To date, there has been little systematic study of the stigma associated with AD. A preliminary study was conducted to test the psychometric properties of instruments designed to measure stigma in persons with AD (PwAD) and their family caregivers. Subsequently, this proposed longitudinal study (18 months) is designed to describe the: 1) 'natural history' of perceived stigma in PwAD following the disease diagnosis (within 6 months) over the early disease stages (18 months following entry into the study); 2) relationships among perceived stigma in PwAD and quality of life (QOL) outcomes (depression, behavioral symptoms, personal control, physical health, self-esteem, and social support and activity) over the18 study months; and 3) relationships among the family caregiver's perceived stigma and QOL outcomes in PwAD over the early disease stages. Secondary aims include: 1) Identify the relationships among personal (mental status, gender, living situation, caregiver knowledge of AD), environmental (rural/urban) and ethnic background variables on perceived stigma in PwAD and their primary caregiver. 2) Using open-ended interviews, qualitatively describe the manifestations of stigma as perceived by PwAD. The study sample includes N=160 participants (n=80 PwAD; n=80 family caregivers for a power of >.80). PwAD will: 1) have a confirmed diagnosis of AD within the last 6 months; 2) have a Mini-Mental State Exam score of >15; and 3) be living in the home or assisted living setting. Family caregivers will be included with the participating PwAD. Conducting the study at two divergently different locations, one inner city and one rural setting, allows for a heterogeneous population and the examination of perceived stigma across cultural and environmental contexts. Data will be collected by trained research assistants in the home or clinic setting at 4 assessment points: baseline and 6, 12, and 18 months following baseline. Data analysis will include growth curve analysis to examine the relationship of perceived stigma (PwAD and family caregiver) to QOL outcomes of PwAD and the relationship of background variables to perceived stigma over time. Responses to the interview will be analyzed using content analysis to identify categories, themes, or relational patterns over time. Studies conducted with other populations support the effects of the stigmatizing experience on QOL outcomes including self esteem, social behaviors, physical health, and emotional outcomes such as depression. Considering the compounded stigmatizing conditions evident in AD (mental and physical impairment, aging, and loss of abilities), the importance of examining the stigma experience in PwAD and its effect on QOL is underscored. These findings have the potential to significantly impact of health and well being outcomes by identifying components of perceived stigma that are related to QOL over the early disease stages - a time when self-awareness and depression in PwAD are at their highest. ? ? ?

National Institute of Health (NIH)
National Institute of Nursing Research (NINR)
Small Research Grants (R03)
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Nursing Science: Adults and Older Adults Study Section (NSAA)
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Mann Koepke, Kathy M
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University of Illinois at Chicago
Schools of Nursing
United States
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Burgener, Sandy C; Buckwalter, Kathleen; Perkhounkova, Yelena et al. (2015) Perceived stigma in persons with early-stage dementia: Longitudinal findings: Part 1. Dementia (London) 14:589-608
Burgener, Sandy C; Buckwalter, Kathleen; Perkhounkova, Yelena et al. (2015) The effects of perceived stigma on quality of life outcomes in persons with early-stage dementia: Longitudinal findings: Part 2. Dementia (London) 14:609-32
Riley, Rebecca J; Burgener, Sandy; Buckwalter, Kathleen C (2014) Anxiety and stigma in dementia: a threat to aging in place. Nurs Clin North Am 49:213-31