Development and validity of the Family Stigma in Alzheimer's disease Scale (FS-ADS)

Abstract

Although it is widely assumed that persons with Alzheimer disease (AD) and their family caregivers are victims of stigmatization, family stigma in the area of AD has received surprisingly limited attention. Reliable, valid, and user-friendly scales are a first step in expanding this body of knowledge. The aim of this study was to develop and examine the validity of the Family Stigma in Alzheimer's disease Scale. Interviews were conducted with 185 children of persons with AD. A pool of 100 items was identified from the literature and an earlier qualitative study including 3 dimensions (caregivers' stigma, lay persons' stigma, and structural stigma). Exploratory factor analyses, theoretical relevance, and internal reliability analyses allowed us to reduce the pull to 62 items. Regarding construct validity, statistically significant associations were found between family stigma and caregivers' burden and behavioral problems, in most of the scales. Although further testing is warranted, these findings indicate that the Family Stigma in Alzheimer's disease Scale is a reliable and valid instrument for assessing stigma in the context of AD.