Perceived Rights of and Social Distance to People with Alzheimer’s Disease

Bourkel, Elisabeth; Ferring, Dieter; Weber, Germain

doi:10.1024/1662-9647/a000052

Cited by 6 publications

(7 citation statements)

References 26 publications

(42 reference statements)

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“…Another limitation might be the use of vignettes, which do not necessarily reflect real-life situations [35]. However, vignettes are commonly used to assess stigmatic beliefs in a variety of conditions [36,37], and they have been especially useful for testing hypotheses [17,20,[38][39][40]. Finally, it should be noted that our vignettes did not use the terms "young/late onset dementia", but rather varied the age of the person described in them.…”

Section: Discussionmentioning

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: Discussionmentioning

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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“…It is possible that responses represent a disproportionately medical understanding of the syndrome that reduces or ignores the lived, personal experience [ 49 ]. Clinicians and medical researchers may bring different values to studies about appropriate dementia knowledge and, as a result, may overlook legal and ethical issues, end-of-life decision making, and individual human rights [ 50 , 51 ]. It is possible that respondents who have a clinical focus may differ in how they prioritise information about care and treatment for people with dementia when contrasted with, for example, family members or people in other professions (such as law or social work).…”

Section: Discussionmentioning

confidence: 99%

What should we know about dementia in the 21st Century? A Delphi consensus study

et al. 2015

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BackgroundEscalating numbers of people are experiencing dementia in many countries. With increasing consumer needs, there is anticipated growth in the numbers of people providing diagnostic evaluations, treatments, and care. Ensuring a consistent and contemporary understanding of dementia across all of these groups has become a critical issue. This study aimed to reach consensus among dementia experts from English speaking countries regarding essential and contemporary knowledge about dementia.MethodsAn online Delphi study was conducted to examine expert opinion concerning dementia knowledge with three rounds of data collection. A sample of dementia experts was selected by a panel of Australian experts, including a geriatrician and three professors of aged care. Purposive selection was initially undertaken with the sample expanded through snowballing. Dementia experts (N = 19) included geriatricians, psychologists, psychiatrists, neuroscientists, dementia advocates, and nurse academics from the United Kingdom, United States, and Australia. In the first round, these participants provided open-ended responses to questions determining what comprised essential knowledge about dementia. In the second round, responses were summarised into 66 discrete statements that participants rated on the basis of importance. In the third round, a rank-ordered list of the 66 statements and a group median were provided and participants rated the statements again. The degree of consensus regarding importance ratings was determined by assessing median, interquartile range, and proportion of experts scoring above predetermined thresholds. Correlation scores were calculated for each statement after the final round to identify changes in statement scores.ResultsThe Delphi experts identified 36 statements about dementia that they considered essential to understanding the condition. Statements about care for a person experiencing dementia and their care giver represented the largest response category. Other statements, for which full or very high consensus was reached, related to dementia characteristics, symptoms and progression, diagnosis and assessment, and treatment and prevention.ConclusionsThese results summarise knowledge of dementia that is considered essential across expert representatives of key stakeholder groups from three countries. This information has implications for the delivery of care to people with the condition and the development of dementia education programs.

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“…Studies were summarized into three tables (Additional file 2 : Table S1, S2, and S3) based on the disease described in the vignettes. Additional file 2 : Table S1 contains all 24 studies that included at least one vignette on AD [ 13 , 21 – 23 , 25 , 29 – 31 , 33 , 36 , 39 , 41 – 43 , 46 – 52 , 56 – 59 ], Additional file 2 : Table S2 contains 11 studies whose vignettes only focused on other dementias [ 24 , 26 , 28 , 37 , 40 , 45 , 49 , 53 , 54 , 60 , 61 ], and Additional file 2 : Table S3 contains 7 studies whose vignettes focused on conditions other than AD or dementia [ 27 , 32 , 34 , 35 , 38 , 44 , 55 ].…”

Section: Resultsmentioning

confidence: 99%

“…The vignettes were used to evaluate a diversity of outcomes, including social distance (i.e., the perceived degree of separation between various societal groups such as ethnic groups or social classes) [ 23 ], treatment options [ 29 ], emotional reactions [ 42 ], and QoL [ 13 ]. These outcomes were measured using validated instruments (e.g., EQ-5D-5 L [ 9 , 13 ], Quality-of-life – Alzheimer’s Disease scale [ 13 , 68 ], Perceptions of Restraint Use Questionnaire [ 43 , 69 ]) or ad hoc questionnaires developed by the authors (e.g., a five-point scale measuring factors determining physicians’ decision making processes [ 51 ], a five-point Likert-type scale measuring information-seeking, information-giving, and involvement in patient-physician interactions [ 60 ]).…”

Section: Resultsmentioning

confidence: 99%

“…The sex of the hypothetical patients in the vignettes was not given for two [ 29 , 44 ] vignettes and was not applicable for the six vignettes (published in three articles) written in the second-person [ 13 , 32 , 33 ]. Of the 50 remaining vignettes, nine (18 %) (published in seven articles) randomly assigned the sex of the hypothetical patient [ 22 , 23 , 28 , 46 , 47 , 55 , 56 ], 23 (46 %) described the sex as female, and 18 (36 %) described the sex as male. Stratified by vignette group, of the 41 hypothetical patients assigned a sex: 10 patients were female and 14 patients were male for AD; 10 patients were female and three patients were male for non-AD dementias; and three patients were female while one patient was male in vignettes for other conditions.…”

Section: Resultsmentioning

confidence: 99%

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Identifying the components of clinical vignettes describing Alzheimer’s disease or other dementias: a scoping review

Randhawa

Jiwa

Oremus

2015

BMC Med Inform Decis Mak

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BackgroundClinical vignettes are often used to elicit information about health conditions in research studies. This review summarizes the components of clinical vignettes describing Alzheimer’s disease (AD) or other dementias. The purpose is to provide recommendations for the development of standardized vignettes that may be used in future studies.MethodsMEDLINE, EMBASE, PsycINFO, ASSIA, CINAHL were searched from their inception to June 2014. Primary English-language studies employing vignettes to describe AD or similar disorders (including other dementias and Parkinson’s disease) were included in the review. Included studies had to describe the content of the vignettes in the published manuscripts. The characteristics of the included studies and the vignettes were extracted in tabular form and summarized qualitatively.ResultsForty-two studies were included in the review. Twenty-four of the studies contained at least one AD vignette, 11 had vignettes focusing on non-AD dementias, and seven contained vignettes describing conditions other than dementia. In total, 58 vignettes were obtained from the 42 included studies.ConclusionsKey aspects to consider when constructing vignettes for AD or other dementias include writing the vignettes from a third-person perspective and presenting hypothetical patients as being at least 65 years of age. Researchers should develop standardized vignettes for use across studies.Electronic supplementary materialThe online version of this article (doi:10.1186/s12911-015-0179-x) contains supplementary material, which is available to authorized users.

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Perceived Rights of and Social Distance to People with Alzheimer’s Disease

Cited by 6 publications

References 26 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

What should we know about dementia in the 21st Century? A Delphi consensus study

Identifying the components of clinical vignettes describing Alzheimer’s disease or other dementias: a scoping review

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