A Systematic Review of Dementia-related Stigma Research: Can We Move the Stigma Dial?

Herrmann, Lynn Katherine; Welter, Elisabeth; Leverenz, James B.; Lerner, Alan J.; Udelson, Nancy; Kanetsky, Cheryl; Sajatovic, Martha

doi:10.1016/j.jagp.2017.09.006

Cited by 228 publications

(235 citation statements)

References 62 publications

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“…This mirrors results from a study in Nigeria that included descriptions of dementia such as "disease of insanity" and showed that 36% of respondents associated dementia with shame and embarrassment [17]. Dementia-related stigma is common worldwide, and impedes help-seeking behavior of PWD and caregivers [18]. While our study did not specifically examine stigma, further investigation is needed to fully understand the amount of stigma for PWD in this population.…”

Section: Discussionsupporting

confidence: 76%

Community perceptions about dementia in southwestern Uganda

et al. 2020

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Background: With the increasing number of people surviving into older age in Africa, dementia is becoming a public health concern. Understanding the social dynamics of dementia in resource-limited settings is critical for developing effective interventions. We explored community perceptions about people with dementia in southwestern Uganda. Methods: Fifty-nine individuals (aged 19-85 years, 56% female) participated in seven focus group discussions. In addition, 22 individual in-depth interviews were conducted among individuals (aged 22-84 years, 36% female). Both interviews and focus group discussions were audio recorded, transcribed verbatim, and evaluated using a quantitative content analysis approach.Results: Five themes were generated during content analysis: i) Labeling of the illness, ii) Presentation of the person with dementia, iii) Causation, iv) Impact of the disease on people with dementia and their caregivers and v) Views on how to address unmet needs in dementia care. Dementia was commonly referred to as "okuhuga" or "okwebwayebwa" (also, oruhuzyo/ empugye / akahuriko) which translates as "mental disorientation". The participants reported that most people with dementia presented with forgetfulness, defecating and urinating on themselves, wandering away from home, going out naked, and picking up garbage. Some participants perceived memory problems as a normal part of the aging process, while others attributed the cause of dementia to syphilis, cancer, allergy, old age, satanic powers, witchcraft, poor nutrition, or life stress. Participants reported multiple sources of stress for caregivers of people with dementia, including financial, social, and emotional burdens. Finally, participants suggested that community and governmental organizations should be involved in meeting the needs of people with dementia and their caregivers.Conclusions: Community members in southwestern Uganda largely identified dementia as a problem that comes with older age, and can identify key features of dementia presentation. Participants identified significant stressors affecting people with dementia and their caregivers, and reported that families and caregivers would benefit from education on the management of symptoms of dementia, and assistance in overcoming associated financial, social, and emotional burdens related to caretaking.

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Section: Discussionsupporting

confidence: 76%

Community perceptions about dementia in southwestern Uganda

et al. 2020

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“…Similar programmes related specifically to dementia in Asian New Zealanders may have comparable effects on the experience of those with dementia and their families in Asian communities. There are relatively few research examples focusing on decreasing the stigma related to dementia in general or specifically for the Asian population . One example utilised several methods such as health fairs, dementia seminars, radio shows, television episodes, and a YouTube series to disseminate information as a way to destigmatize dementia in a Chinese‐American community …”

Section: Discussionmentioning

confidence: 99%

“…Dementia-related stigma is pervasive across the globe and may be affecting ethnic or immigrant minorities to a greater extent. 20 Chen et al reported that culturally there is stigma in China where people with dementia face ridicule, misunderstanding, isolation, discrimination, and even abuse. 21 The theme of stigma (towards the person people living with dementia and family, and health care) found in our study is not unique.…”

Section: Discussionmentioning

confidence: 99%

“…focusing on decreasing the stigma related to dementia in general or specifically for the Asian population. 20 One example utilised several methods such as health fairs, dementia seminars, radio shows, television episodes, and a YouTube series to disseminate information as a way to destigmatize dementia in a Chinese-American community. 29 An important finding from our study is the lack of culturally appropriate education around dementia for Asian New Zealanders, with a lack of resources in non-English languages.…”

Section: Implications For Policy and Practice In Nzmentioning

confidence: 99%

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Perspectives of dementia from Asian communities living in New Zealand: A focus group of Asian health care professionals

Cheung

Appleton

Boyd

et al. 2019

Int J Geriat Psychiatry

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Objective The number of Asian New Zealanders with dementia is growing. The objective of this study was to explore with a group of Asian health care professionals about public attitudes towards dementia in Asian communities in New Zealand, the stigma of dementia, and how best to develop culturally appropriate services for Asian people and families living with dementia. Methods A focus group was conducted with a group of bilingual Asian health care professionals. A topic guide was developed based on the discussion at a prior meeting with the Cross Cultural Interest Group. The data were independently analysed by three researchers using the thematic qualitative methodology. Results Eleven overseas‐born Asian health care professionals (Chinese: n = 9, 82%) participated in the focus group. Four main themes emerged from the data: (a) cultural interpretations of dementia; (b) stigma; (c) filial piety; and (d) inequity in the availability of resources. Conclusion Our findings suggest that much work is needed to destigmatise dementia in New Zealand Asian communities, through psychoeducation, public awareness, and the availability of readily accessible services that can meet their cultural and language needs.

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“…Stigma is already a pervasive issue in ADRD. 30 Individuals with, or at risk of exposure to, COVID-19 have been stigmatized. 31 Risks of stigma include ostracization and denial of health and social services, 31 which comes at time of potential scarcity of resources to be allocated.…”

Section: (5) Mental Hygiene Trauma and Stigma In The Time Of Covid-19mentioning

confidence: 99%

Anticipating and Mitigating the Impact of the COVID-19 Pandemic on Alzheimer's Disease and Related Dementias

Brown

Kumar

Rajji

et al. 2020

The American Journal of Geriatric Psychiatry

417

491

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A Systematic Review of Dementia-related Stigma Research: Can We Move the Stigma Dial?

Cited by 228 publications

References 62 publications

Community perceptions about dementia in southwestern Uganda

Community perceptions about dementia in southwestern Uganda

Perspectives of dementia from Asian communities living in New Zealand: A focus group of Asian health care professionals

Anticipating and Mitigating the Impact of the COVID-19 Pandemic on Alzheimer's Disease and Related Dementias

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