A Narrative Review of Alzheimer’s Disease Stigma

Rosin, Eric R.; Blasco, Drew; Pilozzi, Alexander; Yang, Lawrence H.; Huang, Xudong

doi:10.3233/jad-200932

Cited by 38 publications

(45 citation statements)

References 61 publications

(45 reference statements)

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…The public stigmatization process causes significative adverse effects on quality of life and health of the patient, for example removing him from utilization of health and social services and excluding him from participation in everyday life. Negative persistent stereotypes around PWD include "they're away with the fairies" or "empty shell", myths invented by general public to justify ethically unjustifiable discriminatory attitudes 10 . Stigma applied to AD represents an important area for research, however it is underinvested currently and some scholars strongly emphasize the need to remedy with further studies 10,19 .…”

Section: Stigma Concept Applied To Alzheimer's Diseasementioning

confidence: 99%

“…Negative persistent stereotypes around PWD include "they're away with the fairies" or "empty shell", myths invented by general public to justify ethically unjustifiable discriminatory attitudes 10 . Stigma applied to AD represents an important area for research, however it is underinvested currently and some scholars strongly emphasize the need to remedy with further studies 10,19 . Although, to date direct comparisons with other stigmatizing conditions are relatively rare there is evidence that the stigma towards PWD, unlike other disorders, shows higher levels of immutability and persistence, and is associated to less propensity by public to help the victim and family, also with voluntary donations, as for AIDS and cancer (see Weiner et al 53 , cited by Rosin et al) 10 .…”

Section: Stigma Concept Applied To Alzheimer's Diseasementioning

confidence: 99%

“…Stigma applied to AD represents an important area for research, however it is underinvested currently and some scholars strongly emphasize the need to remedy with further studies 10,19 . Although, to date direct comparisons with other stigmatizing conditions are relatively rare there is evidence that the stigma towards PWD, unlike other disorders, shows higher levels of immutability and persistence, and is associated to less propensity by public to help the victim and family, also with voluntary donations, as for AIDS and cancer (see Weiner et al 53 , cited by Rosin et al) 10 . A main feature is that both prejudice and discriminatory behaviors, mostly due to ignorance and misinformation 23,29 can be enacted by general public or health care professionals (HCPs) -so called public stigma and professional stigma, respectively -against both PWD and people close to them, as family members -so called courtesy stigma or family stigma.…”

Section: Stigma Concept Applied To Alzheimer's Diseasementioning

confidence: 99%

“…One area refers to the persistent lack of disease modifying treatment as a relevant trigger factor of stigmatization and other ethical concerns. Another key area refers to the biomarker-based diagnosis of preclinical AD as a cause of anticipating stigmatization [10][11][12][13][14][15] . This last area includes a number of ethical challenges principally related to communication, in a double context (clinical research and practice) of the "risk" of future dementia.…”

Section: Emerging Areas Of Ad Research and Their Connection With Stigmamentioning

confidence: 99%

“…In parallel, there is a strong movement to extend their use to medical practice because they can allow a diagnosis even before symptoms appear, thus solving the current problem of late diagnosis 9 . From an ethical perspective a preclinical or prodromal diagnosis raises some concern, primarily about stigmatization of people suffering of dementia, family and caregivers [10][11][12][13][14][15] . Ethical debate has a theoretical background arising from the tension between two of the four principles proposed by bioethicists Beauchamp and Childress and considered by many as standard theoretical framework from which to analyze ethical situations in medicine: specifically, the principle of non-maleficence (primum non nocere) and of beneficence.…”

Section: Introductionmentioning

confidence: 99%

See 4 more Smart Citations

Biological diagnosis of Alzheimer’s disease and the issue of stigma

Ronchetto

2021

JGG

View full text Add to dashboard Cite

Starting from the early years of the 21 st century a shift occurred in the conceptualization of Alzheimer's disease (AD). Thanks to advances in the biomolecular field, new criteria of diagnosis and a new lexicon such as "preclinical AD", "prodromal AD", "at risk for AD" have been introduced. The disease has been reconceptualized as a slow and progressive pathological process beginning decades before clinical symptoms of dementia occurrence. Today, due to biomarkers detected in cerebrospinal fluid and on neuroimaging, there is the opportunity of a preclinical diagnosis of dementia in asymptomatic or minimally symptomatic individuals. The key characteristic of biomarkers is that they appear to reflect earlier brain changes eventually leading to clinical dementia. Originally reserved for research purposes, biological diagnosis and new lexicon seem to be now progressively included in clinical practice. If this trend is in line with the most advanced scientific achievements, on the other hand it raises some ethical concerns, mainly linked to stigma and discrimination expected toward people with a diagnosis of pre-dementia and their family caregivers. It is good to keep in mind that there is no currently certainty that asymptomatic will become symptomatic individuals and consequently further studies are needed. The purpose of this article is to offer a historical overview and ethical discussion about the conceptual changes in Alzheimer's disease, from Alois Alzheimer to current era.

show abstract

Section: Stigma Concept Applied To Alzheimer's Diseasementioning

confidence: 99%

Section: Stigma Concept Applied To Alzheimer's Diseasementioning

confidence: 99%

Section: Stigma Concept Applied To Alzheimer's Diseasementioning

confidence: 99%

Section: Emerging Areas Of Ad Research and Their Connection With Stigmamentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Biological diagnosis of Alzheimer’s disease and the issue of stigma

Ronchetto

2021

JGG

View full text Add to dashboard Cite

show abstract

Public and participant involvement as a pathway to inclusive dementia research

Walter,

McArdle,

Largent

et al. 2024

Alzheimer's & Dementia

View full text Add to dashboard Cite

The field of Alzheimer's disease and related dementias (ADRD) urgently requires inclusive research to ensure the priorities and outcomes of research apply to those most impacted. We postulate public and participant involvement (PPI) as a pathway to achieving the best science, both in research that informs health and social policy as well as in therapeutic studies to treat and prevent ADRD. This position paper aims to provide dementia researchers with evidence to understand how to apply PPI. We begin by highlighting the disparities experienced by people with dementia, including ageism, stigma of cognitive impairment, and health disparities for minoritized communities. We then provide examples of PPI in ADRD across the research lifecycle, from defining research topics of priority to those impacted by ADRD, through the design, analysis, dissemination, and translation to policy and practice. We also provide recommendations to create and maintain collaboration between researchers and communities through PPI.Highlights A central premise of public and participant involvement (PPI) is collaborative relationships between researchers and community members. To build equitable partnerships, researchers must acknowledge and understand the context of research. This includes ageism, the stigma of dementia, and ongoing discrimination for many minoritized communities. Meaningful partnerships include choice, respect, shared decision making, access, inclusion, and representation. Notably, we recommend that researchers begin partnerships early in the research process and share the impact of PPI on research.

show abstract

Empowering general practitioners in dementia care: The ANTISTIGMA education intervention in Europe

Cartz‐Piver,

Calvet,

Mehrabian‐Spassova

et al. 2023

Int J Geriat Psychiatry

View full text Add to dashboard Cite

Background: There is a well-documented lack or delay of diagnosis of dementia in all countries, including in Europe. Most general practitioners (GPs) have acquired adequate academic and scientific information about dementia but avoid using it in practice because of stigma. Objectives:To persuade GPs of their role in dementia detection, an Antistigma education intervention was designed, with teaching objectives focusing on "Why" and "How" to diagnosis and manage dementia, based on ethical and practical content, as opposed to classical training centered on teaching "What", with mainly academic content. Methods: During the European Joint Action "ACT ON DEMENTIA", the Antistigma education intervention was implemented in four Universities: Lyon and Limoges (France), Sofia (Bulgaria) and Lublin (Poland). General data, including information about training and experience in dementia, was collected. Specific scales measured Dementia Negative Stereotypes DNS and Dementia Clinical Confidence D-CO before and after training. Results: 134 GPs and 58 residents R completed the training. The participants were mainly women (74%), and the mean age was 42.8 � 13.2. Before training, participants expressed difficulties in defining GPs role and worries about inflicting Stigma, Risks of diagnosis, Lack of benefit and Communication difficulties. Participants' D-CO was significantly higher for Diagnosis process (64%) than for other clinical situations. After training, total NS was reduced from 34.2% to 29.9% (p < 0.001), and stereotypes were improved: GPs' role (40.1% reduced to 35.9%; p < 0.001), Stigma (38.7% reduced to 35.5%; p < 0.001), Risks of diagnosis (39.0% reduced to 33.3%; p < 0.001), Lack of Benefit (29.3% reduced to 24.6%; p < 0.001) and Communication difficulties (19.9% reduced to 16.9%; p < 0.001). After training, D-CO was significantly increased in all the clinical situations (p < 0.001), but stayed highest for Diagnosis Process. There was no significant difference between the universities. Participants who benefited best from the Antistigma education intervention were those without training in Geriatrics and those working in nursing homes (who reduced the most D-NS), as well younger participants and those who managed less than five people living with dementia per week (who increased the most D-CO).

show abstract

A Narrative Review of Alzheimer’s Disease Stigma

Cited by 38 publications

References 61 publications

Biological diagnosis of Alzheimer’s disease and the issue of stigma

Biological diagnosis of Alzheimer’s disease and the issue of stigma

Public and participant involvement as a pathway to inclusive dementia research

Empowering general practitioners in dementia care: The ANTISTIGMA education intervention in Europe

Contact Info

Product

Resources

About