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 is the most commonly used measure of self-stigma in dementia but its suitability as a tool to assess change in a diverse UK population is unclear. Thus, the aim of this study was to identify, adapt and evaluate the acceptability and psychometric properties of self-stigma measures for people with dementia for use as measures of change. Method: A four-stage approach was used to identify, adapt and test self-stigma measures in a UK population who had received a diagnosis of dementia: 1) psychometric outcome measures were extracted based on the evidence base of an anti-stigma intervention that guided the current work, 2) identified measures were assessed for psychometric quality according to Terwee criteria, 3) modifications were made for culture (UK) and condition (dementia rather than mental health) through stakeholder consultations (researchers in fields of dementia and stigma; experts by experience in living with, or caring for persons with dementia), and 4) modified measures were pilot tested in a small sample of people living with dementia (N=40) for acceptability, and preliminary psychometric properties (internal consistency, test-retest, concurrent and convergent validity). Results: Seven measures were identified but most were of low quality (Terwee range: 0-4). Three measures were considered and modifiable by stakeholders. Pilot testing indicated data were normally distributed. Almost all measures demonstrated acceptable internal consistency (except the Stigma Stress Scale total and internalized shame subscale), test retest reliability, concurrent validity and convergent validity, with some exceptions. Conclusion: The Secrecy subscale, Stigma Impact Scale and Stigma Stress Scale were acceptable for use in a UK population of people living with dementia. However, further psychometric analysis is required before such measures can be implemented in psychosocial research.

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

“…a diagnosis of schizophrenia) across settings [ 21 , 22 ]. HOP has recently undergone adaptation to support people living with dementia [ 23 ], however, there are currently no ‘gold standard’ outcome measures available to evaluate the effectiveness of psychosocial stigma reduction interventions in dementia, with previous studies criticised for not reporting psychometric properties of measures used or using non-standardised outcomes [ 11 , 24 ]. As such, there is a need for standardised and psychometrically robust outcome measures developed specifically to evaluate self-stigma for people with dementia.…”

What happens when people develop dementia whilst working? An exploratory multiple case study

“…Once people obtain a diagnosis, there may be long delays before disclosure due to the stigma associated with dementia (Bhatt, 2020 ). This is especially so in the workplace where a ‘geriatric´ diagnosis, such as dementia, is not commonly seen or expected.…”

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

“…a diagnosis of schizophrenia) across settings (21,22). HOP has recently undergone adaptation to support people living with dementia (23), however, there are currently no 'gold standard' outcome measures available to evaluate the effectiveness of psychosocial stigma reduction interventions in dementia, with previous studies criticised for not reporting psychometric properties of measures used or using non-standardised outcomes (11,24). As such, there is a need for standardised and psychometrically robust outcome measures developed speci cally to evaluate self-stigma for people with dementia.…”