Measuring perceived stigma in persons with progressive neurological disease

Abstract

The perceived stigma inherent in progressive neurological diseases, such as Alzheimer's dementia (AD) and Parkinson's Disease (PD), has been under-recognized. The purposes of this pilot study were to examine: (1) the psychometric properties of the Stigma Impact (SIS) and Stigma Experience Scales (SES) when used with persons with AD or PD; and (2) differences in perceived stigma by disease diagnosis. The sample included 26 persons with AD and 14 persons with PD. Findings support the reliability of the total SIS scale for both persons with AD or PD. The four SIS subscales had acceptable reliability when used with persons with PD, while two of the four subscales had adequate reliability when used with persons with AD. Internal consistency reliability of the SES was acceptable in PD sample only. Validity of the total SIS scale and the four subscales was supported through significant correlations with mental status (AD sample only), self-esteem, depression, and personal control. Persons with AD scored higher on the SIS internalized shame subscale and lower on personal control compared to persons with PD. Overall, support was found for the SIS as a reliable and valid measure of perceived stigma in persons with AD or PD. The magnitude of perceived stigma in persons with AD is comparable to or greater than other populations of persons with chronic illness, including cancer and PD.