Adaptation and preliminary psychometric properties of three self-stigma outcome measures for people living with dementia

Abstract

Background A diagnosis of dementia presents individuals with both social and psychological challenges but research on self-stigma in dementia has been largely confined to qualitative approaches due to a lack of robust outcome measures that assess change. The Stigma Impact Scale (SIS) is the most commonly used measure of self-stigma in dementia but its suitability as a tool to assess change in a UK population is unclear. Thus, the aim of this study was to identify, adapt and evaluate the acceptability and preliminary psychometric properties of self-stigma measures for people with dementia for use as measures of change. Method A 4-step sequential design of identifying, selecting, adapting and testing psychometric measures as follows: 1) identification of stigma outcome measures through reviewing anti-stigma intervention literature, 2) selection of candidate measures through quality assessment (Terwee criteria) and expert consultation, 3) adaptation for UK dementia population (Stewart and colleagues Modification Framework) 4) testing of adapted measures in people living with dementia (N=40) to establish acceptability and preliminary reproducibility (test retest), criterion (concurrent with SIS) and construct (negative convergence with Rosenberg self-esteem scale) validity. Results Seven measures were identified from the review, but most were poor quality (Terwee range: 0–4). Three measures were selected for modification: Stigma Stress Scale; Secrecy subscale of the Stigma Coping Orientation Scale; Disclosure Related Distress Scale. Internal consistency and test-retest reliability were acceptable (.866≤α≤ .938; ICC .721–.774), except for the Stigma Stress Scale (α= .643) for which the component subscales (perceived harm, ability to cope) had stronger psychometric properties. Concurrent validity with the SIS was not established (r<.7) although there were significant correlations between total SIS and perceived harm (r=.587) and between internalized shame and secrecy (r=.488). Relationships with self-esteem were in the hypothesized direction for all scales and subscales indicating convergent validity. Conclusion Stigma scales from mental health are not readily adapted for use with people with dementia. However there is preliminary evidence for the acceptability, reliability and validity of measures of perceived harm, secrecy and stigma impact. Further conceptual and psychometric development is required.

Comparing the stigma experiences and comfort with disclosure in Dutch and English populations of people living with dementia

“…Analyses indicate that the stigma measures are reliable and valid for use in a Dutch population with high internal consistencies for most (sub)scales, as has previously been found for English versions of these scales (Bhatt et al, 2021). The only scale not showing adequate internal consistency was the internalised shame subscale of the Stigma Impact Scale, in line with previous studies with people living with dementia (Bhatt et al, 2021;Lion et al, 2020), perhaps partly due to the small number of items (n = 3).…”

“…Analyses indicate that the stigma measures are reliable and valid for use in a Dutch population with high internal consistencies for most (sub)scales, as has previously been found for English versions of these scales (Bhatt et al, 2021). The only scale not showing adequate internal consistency was the internalised shame subscale of the Stigma Impact Scale, in line with previous studies with people living with dementia (Bhatt et al, 2021;Lion et al, 2020), perhaps partly due to the small number of items (n = 3). The study showed that Dutch participants who reported more severe stigma impact or consequences, i.e., social rejection, internalised shame, and social isolation, as well as perceived stigma-related harm and secrecy also reported lower self-esteem, whereas greater resources to cope with stigma were associated with higher self-esteem.…”

Stigma among UK family carers of people living with dementia

“…6,7 This study is, to our knowledge, the first quantitative exploration of stigma by association, affiliate stigma and positive aspects of caregiving with family carers of people living with dementia in the UK. This study adds to the notion of the 'double effect' of dementia on experiences of stigma, where people living with dementia experience stigma 14 and the majority of their carers also experience stigma. Our results show that carers endorsed stigma by association, suggesting they were aware that others viewed or treated them in a stigmatising fashion; however, the lack of endorsement of affiliate stigma constructs (e.g.…”

“…Previous literature has documented an inverse relationship between self-esteem and stigma in dementia, HIV/AIDs and cancer. [12][13][14] Therefore, it was hypothesised that stigma by association and affiliate stigma would be negatively correlated with self-esteem, whereas the positive aspects of caregiving subscale would be positively correlated.…”

Home‐dwelling older adults' attitudes and perceptions of dementia: A Q‐methodological study in South Korea

“…According to a study conducted by Kim and Jung (2015), 208 Koreans aged 65 and over perceived dementia as a stigma, and the score was 53 out of 100. A study conducted by Bhatt et al (2021) have reported that older adults with dementia have been found to be at risk of self-stigma. Another study conducted by Yang et al (2021) investigated 372 community-dwelling adults in Shanghai aged 60 and older.…”