Understanding public-stigma and self-stigma in the context of dementia: A systematic review of the global literature

Nguyen, Trang Quynh; Li, Xiaoming

doi:10.1177/1471301218800122

Cited by 105 publications

(109 citation statements)

References 47 publications

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“…Driven by the increasing rates of dementia worldwide [1], public health and research attention is currently dominated by efforts to decrease stigmatic beliefs towards persons with dementia, in general, and Alzheimer's disease (AD), in particular. This is reflected in all National Dementia Strategy programs implemented in a variety of countries [2], as well as in the increasing amount of studies assessing stigma among the general public (see reviews by Herrmann et al 2018 [3]; Nguyen & Li, 2018 [4];Werner, 2014 [5]). Despite the importance of the studies assessing public stigma towards persons with AD, it should be noted that they have predominantly concentrated on stigma directed towards persons with late-onset dementia (LOD).…”

Section: Introductionmentioning

confidence: 99%

The influence of the age of dementia onset on college students’ stigmatic attributions towards a person with dementia

2020

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Background: Research in the area of public stigma and Alzheimer's disease (AD) is limited to examining stigmatic beliefs towards persons aged 65 and over (i.e., persons with late-onset dementia). The aim of the present study was to compare college students' stigmatic attributions towards an older and a younger person with AD, using an attributional model of stigma. Method: A cross-sectional study was conducted with 375 college students (mean age = 25.5, 58.9% female, 64.3% Jewish) who answered a computerized, self-administered, structured questionnaire after being presented with one of two randomly distributed vignettes varying in the age of the person with AD-80 or 50 years of age. Cognitive, emotional and behavioral attributions of stigma were assessed using an adapted version of the Attribution Questionnaire. Other variables examined included background information, experiences and concerns about developing AD. T-tests and Ordinary Least Square (OLS) hierarchical regressions were used to analyze results. Results: Similar to previous studies, students' levels of dementia stigma were low to moderate. Negative attributions were consistently and significantly higher (β = .17 to .33, p < .01), and positive attributions were significantly lower (β = −.26, p < .01) when the target person was younger rather than older. Conclusion: The differences in stigmatic beliefs towards a younger and older person with AD point to the theoretical and practical importance of clearly stating the age of the target person in stigma studies as well as in programs aimed at reducing public stigma towards persons with AD.

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Section: Introductionmentioning

confidence: 99%

The influence of the age of dementia onset on college students’ stigmatic attributions towards a person with dementia

2020

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“…The Dementia Engagement and Empowerment Project (DEEP) are an organisation which have taken an active approach to this issue and have produced guidelines on language about dementia for journalists, organisations, and communication departments 32 . Indeed, the positive public perception of dementia has the potential to support people with the condition to live well in their local communities 33 . In the UK and Northern Ireland, there are more than 200 dementia friendly communities 34 .…”

Section: Discussionmentioning

confidence: 99%

Emphasise Capability, Not Disability: Exploring public perceptions, facilitators and barriers to living well with dementia in Northern Ireland.

Mitchell

McTurk

Carter

et al. 2020

Preprint

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Background: Improving public knowledge and understanding about dementia has been identified as a priority area by people living with the condition, researchers, educators, and policymakers for several years. Societies that have a better understanding of the condition are more likely to enable people living with dementia to enjoy a better quality of life. The aim of this study was to explore current public perceptions of dementia along with the facilitators and barriers to living well from the perspective of people living with the condition in Northern Ireland. Methods: Four focus group interviews were conducted with a total of 20 people living with dementia across three Northern Irish Counties in June 2019. These interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. Ethical approval was obtained for this study prior to data collection. Findings: Following thematic analysis, three themes emerged in relation to barriers and facilitators to living well with dementia. These were: ‘Emphasis on Disability NOT Capability’, which highlighted societal misconceptions about the activities and modes of life which people with dementia could or could not do; ‘Normalise Dementia – We Don’t Want a Fool’s Pardon’, which focused on how the public could encourage people living with the condition to enjoy greater independence, and ‘Dementia isn’t a Death Sentence’, which considered how professionals, family members and friends treated the person after diagnosis. Conclusions: Public perceptions about dementia have the potential to act as both facilitators and barriers to living well with dementia. People with dementia articulated that they are more likely sustain wellbeing when they are valued and can lead the type of life, they are able to lead. On the contrary, poor public and professional attitudes to dementia had the potential to disempower people living with dementia.

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“…People with dementia have also been found to be at risk of self-stigma. A recent systematic review found self-stigma to be associated with anxiety and depression, personal control, selfesteem, social support and activity participation (8)(9)(10). More specifically, self-stigma has lasting negative consequences for people living with dementia such as withdrawing from everyday activities or interactions, delays in help-seeking, loss of confidence or feeling inferior (11)(12)(13)(14)(15).…”

Section: Self-stigma and Its Impactmentioning

confidence: 99%

“…a diagnosis of schizophrenia) across settings (20,21). HOP has recently undergone adaptation to support people living with dementia, 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 (10,22). As such, there is a need for standardised and psychometrically robust outcome measures developed specifically to evaluate self-stigma for people with dementia.…”

Section: Rationale For Studymentioning

confidence: 99%

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

Bhatt

Stoner

Scior

et al. 2020

Preprint

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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.

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Understanding public-stigma and self-stigma in the context of dementia: A systematic review of the global literature

Cited by 105 publications

References 47 publications

The influence of the age of dementia onset on college students’ stigmatic attributions towards a person with dementia

The influence of the age of dementia onset on college students’ stigmatic attributions towards a person with dementia

Emphasise Capability, Not Disability: Exploring public perceptions, facilitators and barriers to living well with dementia in Northern Ireland.

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

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