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Case Western Reserve University School of Medicine and Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH
Send correspondence and reprint requests to Prof. Martha Sajatovic, Psychiatry and of Neurology, Case Western Reserve University School of Medicine, Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, 10524 Euclid Avenue, Cleveland, OH 44106.
Across the globe, dementia stigma is pervasive and affects quality of life of people with dementia and their families.
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Evidence-based approaches to reduce stigma are lacking.
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Research to identify approaches to reduce dementia stigma is needed.
Stigma negatively affects individuals with cognitive impairment and dementia. This literature review examined the past decade (January 2004 to December 2015) of world-wide research on dementia-related stigma. Using standard systematic review methodology, original research reports were identified and assessed for inclusion based on defined criteria. Initial database searches yielded 516 articles. After removing duplicates and articles that did not fit inclusion criteria (419), 97 articles were reviewed, yielding a final total of 51 publications, mainly originating in the United States and Europe. Studies were assessed for date, geographic region, sample description, methodology, and key findings. Reports were evaluated on 1) how stigmatizing attitudes may present in various subgroups, including in racial or ethnic minorities; 2) stigma assessment tools; and 3) prospective or experimental approaches to assess or manage stigma. Stigma impedes help-seeking and treatment, and occurs broadly and world wide. Stigmatizing attitudes appear worse among those with limited disease knowledge, those with little contact with people with dementia, in men, in younger individuals, and in the context of ethnicity and culture. In some cases, healthcare providers may have stigmatizing attitudes. In research studies, there does not appear to be consensus on how to best evaluate stigma, and there are few evidence-based stigma reduction approaches. Given the projected increase in persons with dementia globally, there is a critical need for research that better identifies and measures stigma and tests new approaches that can reduce stigmatizing attitudes.
Ethnic differences in dementia and Alzheimer's disease.
in: Anderson N. Bulatao R. Cohen B. Critical Perspectives on Racial and Ethnic Differentials in Health in Late Life. National Academies Press,
Washington, DC2004: 95-141
Absolute numbers and relative proportion of individuals with AD will increase dramatically in the upcoming decades. In 2015, it was estimated that 46.8 million people are living with AD world-wide, including 9.4 million in the Americas, 10.5 million in Europe, 4.0 million in Africa, and 22.9 million in Asia.
brings concerns about the ability of formal and informal care systems to provide appropriate support for those affected by cognitive decline. Some individuals with dementia experience stigma, a set of negative and often discriminatory beliefs that society may have about their neurological condition. Blay and Peluso
found average dementia stigma scores in the “moderate” range in a survey of over 500 individuals in France. Notably, the study by Piver et al. found that perceived stigma was higher among health professionals (14% of the sample) than other groups.
Unfortunately, research that specifically targets dementia-related stigma is limited, and there are few evidence-based interventions that specifically target stigma.
Stigma and Alzheimer's disease: a systematic review of evidence, theory, and methods.
in: Corrigan P.W. The Stigma of Disease and Disability: Understanding Causes and Overcoming Injustices. American Psychological Association,
Washington, DC2014: 223-244
that reviewed English language articles from 1990 to 2012 found that existing research has mostly described the subjective experience of stigma. That review also described the consequences of stigma and posited conceptual components, noting that the vast majority (nearly 75%) of published reports do not include a theoretical model of stigma.
The public health impact of reducing dementia stigma could potentially lead to better care access, greater support engagement, and ultimately a higher quality of life for people with dementia and their families. This systematic literature review examines world-wide evidence over the past decade on dementia-related stigma. As this review was intended as a preparatory step in designing and testing stigma reduction interventions, the focus is on 1) how stigmatizing attitudes may present in various subgroups, including in racial or ethnic minorities, 2) stigma assessment tools, and 3) prospective or experimental approaches to assess or manage stigma. Because this review was undertaken to help develop a U.S. dementia-related stigma reduction initiative, stigma in American minorities was of particular interest. Lastly, gaps in knowledge guided a set of recommendations for future research.
Methods
This literature search focused on peer-reviewed research reports on AD-related and dementia-related stigma. The CINAHL, Cochrane Media Library, PubMed, and PsycINFO databases were searched for original research studies and reviews published between January 2004 and December 2015. Search terms used were Alzheimer disease, dementia, mild cognitive impairment, and cognitive decline; with keyword 2: stigma; and keyword 3: minority or minorities or discrimination management or reduction or social interaction or avoidance or pity. Filters included program, curriculum, and intervention. A Web of Science search was done using dementia, neurocognitive disorders, Alzheimer, or mild cognitive impairment as first term and stigma as second term. Additional searches used dementia as first term, stigma as second term, and fear, discriminat* or minorit* as third term (* was used as wild card, to include several forms of the term). Reports from all countries were included in this review.
Inclusion criteria required that the report have a specific and main focus on stigma or dementia attitudes, was published in a peer-reviewed journal between January 2004 and December 2015, was published in English, and specifically measured stigma using either quantitative or qualitative methods. Studies with only a peripheral mention or focus on stigma were excluded, as were reports that were available in non–peer-reviewed formats such as society meeting proceedings or reports, book chapters, or dissertations. The term stigma did not have to be used as long as the thematic focus was negative attitudes or other discriminatory thoughts/behaviors consistent with the definition of stigma. Abstracts were first screened by one reviewer (LH) for relevance by examining titles and abstracts. To minimize bias, one of the authors reviewed every abstract (LH) and the second reviewer was one of the key authors of the review (MS or EW). A third reviewer served as the tie-breaker /consensus leader in the case of inclusion discrepancy and if there were differences of opinion regarding elements of data abstraction.
Data Collection and Synthesis
Studies were assessed for inclusion confirmation, date/geographic region, sample description, methodology, and key findings. Reports were evaluated on: 1) how stigmatizing attitudes may present in various subgroups, including in racial or ethnic minorities, 2) stigma assessment tools, and 3) prospective or experimental approaches to assess or manage stigma.
Results
As noted in Figure 1, database searches yielded 516 articles. After removing duplicates and articles that did not fit inclusion criteria (419), 97 articles were reviewed. Seven were not included because they were literature reviews and 51 were not included because they lacked a stigma measurement. Twelve articles were identified from references and included in the review, leaving a final total of 51 articles.
An intergenerational choir formed to lessen Alzheimer's disease stigma in college students and decrease the social isolation of people with Alzheimer's disease and their family members: a pilot study.
Attitudes toward Alzheimer's disease: a qualitative study of the role played by social representation on a convenient sample of French general practitioners.
African American, Chinese, and Latino family caregivers' impressions of the onset and diagnosis of dementia: cross-cultural similarities and differences.
An intergenerational choir formed to lessen Alzheimer's disease stigma in college students and decrease the social isolation of people with Alzheimer's disease and their family members: a pilot study.
African American, Chinese, and Latino family caregivers' impressions of the onset and diagnosis of dementia: cross-cultural similarities and differences.
Attitudes toward Alzheimer's disease: a qualitative study of the role played by social representation on a convenient sample of French general practitioners.
Table 1 shows papers, grouped by major subgroup focus, that address stigmatizing beliefs in specific populations such as healthcare professionals, the general public, people with cognitive impairment, and in families. Although some subgroups had findings indicating more negative attitudes towards AD, significant correlations were not consistent among these populations.
Table 1Studies that Described Stigmatizing Beliefs in Population Subgroups
Attitudes toward Alzheimer's disease: a qualitative study of the role played by social representation on a convenient sample of French general practitioners.
AD is a “disease of autonomy,” with more significance than cognitive decline. Family is an essential partner in care/coping. Stigma is a barrier to AD diagnosis.
Europe N = 23 National experts in dementia and primary care from eight European countries
Qualitative; focus groups
Stigma affects professional's willingness to provide an early diagnosis. Attitudes varied by county. Stigma may be lower in countries with strong advocacy
US N = 309 (153 residents, 80 staff, 76 family members at 6 residential/long term facilities)
Observations and semi-structured interviews over a 4-year period
Stigma presents in four themes: (a) ageism; (b) stigma as related to disease and illness; (c) sociocultural aspects; and (d) care setting related stigma.
PWD do not elicit strong social rejection, but rather increased social distancing with more severe dementia. Familiarity with the disease is associated with less discrimination.
Attitudes indicative of stigma included personal avoidance, fear of labeling, and fear of discrimination. Demographic factors (age, gender, education) were significantly associated with some attitudinal factors.
Semi-structured interview; 3-item questionnaire at baseline and follow-up
Following presentation of positive and negative aspects of AD diagnosis and disclosure, participants' preferences changed as they think about consequences.
Cross-sectional; structured interview following vignettes
Most survey respondents expressed compassion and desire to help; Men and people with greater concern about developing AD had a stronger negative reaction.
Africa N = 27 PWD; 31 relatives; 90 cognitively impaired; 92 relatives; 33 HCPs
Mixed-methods; Quantitative + qualitative
Relatives of people with cognitive impairments and with dementia had similar levels of perceived stigma. There is no significant relationship between stigma and socio-demographic variables.
Perceived stigma remains stable during early stages of the disease. Persons living in urban areas have more stigmatizing attitudes compared to rural counterparts.
Japan—urban population N = 950 (40–64 years) and 3132 (65+)
Longitudinal population-based structured interviews repeated after 4 years
4 year follow-up shows better understanding of dementia but still approximately 40% of younger and 50% of older individuals think that dementia is a shameful condition.
US N = 6 service providers, N = 6 family caregivers (Asian—Chinese Americans)
Cross-sectional; qualitative, focus groups
Barriers to care include lack of culturally appropriate programs, HCP lack of understanding of the Chinese language and culture, lack of knowledge about services, and stigma.
US N = 47 caregivers African Americans, Chinese Americans, European Americans, Hispanic Americans
Cross-sectional; qualitative, focus groups
Minorities may have more concerns about discrimination compared to European Americans. Minorities more often identified spirituality/religion as a source of caregiver comfort compared to European Americans.
African American, Chinese, and Latino family caregivers' impressions of the onset and diagnosis of dementia: cross-cultural similarities and differences.
US N = 22; minority family caregivers (African Americans, Latino and Chinese)
Meta-synthesis of three qualitative studies; focus groups for AA; interviews for Latinos and Chinese
Results showed clear cultural differences including a normalization of symptoms most prolonged among African Americans; stigmatization is the highest among Chinese Americans; fear that acculturation may affect caregiving is the biggest concern among Latinos.
found that stigmatizing attitudes in health professionals can delay diagnosis and treatment. An Irish study found that stigma may lead general practitioners (GPs) to delay a dementia diagnosis.
Among GPs, perceptions of societal views of people with dementia centered on a lack of reciprocity related to how dementia can cause of failure to respond to human interaction, a lack of return on social investment, and societal burden.
Another study found that the level of inclusion of the person with dementia by the GP in care planning varies widely from making all efforts to include patients to not including patients at all.
Attitudes toward Alzheimer's disease: a qualitative study of the role played by social representation on a convenient sample of French general practitioners.
Also, GPs may prefer referral to a specialist to confirm diagnosis, and if a GP was providing a diagnosis, there was a preference for family to be present, as well as to “soften” the diagnosis by describing it euphemistically.
Attitudes toward Alzheimer's disease: a qualitative study of the role played by social representation on a convenient sample of French general practitioners.
In line with the notion that knowing a person with a stigmatizing condition can reduce stigma, an Israeli study of family physicians found those with relatives having AD were less likely to stigmatize their patients.
Fear of negative emotional and behavioral response can prevent people with memory concerns from seeking care, and may differ among various groups. In a study that compared American versus British elders on dementia screening acceptance and perceived stigma, British elders had higher scores on perceived stigma, perceived loss of independence, and higher perceived suffering than Americans.
found that poor understanding of AD and negative reactions can add to stigma burden, particularly among men and those who were fearful that they could themselves develop dementia. An Irish study suggested that some patients who want to know their diagnosis may reconsider after further focusing on potential consequences of disclosure.
Similar to findings among clinicians, lay people having a personal relationship with a person with dementia may be less likely to have stigmatizing attitudes. An Australian study found mostly pro-social attitudes,
which were more pronounced in those having familiarity with a person with dementia. Those with negative reactions towards people with dementia were less likely to want to care for them. A French study found lowest stigma among older people,
possibly because older people know someone with dementia their own age. A German mail survey found that almost half of the general public would feel uncomfortable with a person with dementia, and one in four expressed that they would react with fear.
found that pro-social feeling decreased dementia discrimination, and that disease familiarity was associated with less discrimination. In contrast, increased discrimination occurred with more severe AD. Lay perceptions of activity competence in people with AD also found lower competence perception associated with behavioral discrimination.
There may be a lay perception that if dementia is untreatable, seeking diagnosis will not help. Perpetuation of stigma may be further amplified by the popular media. In a review of popular films, researchers found cinema to contain misleading and stigmatizing depictions or messages about dementia.
In addition to delaying diagnosis and treatment, and contributing to social isolation, stress, and low self-esteem for individuals with dementia, stigma has serious consequences for families and caregivers. Caregivers' life histories may impact care. Among Eastern European caregivers, early-life trauma of war and persecution could impact willingness to utilize services.
addressed the growing concern of dementia stigma in the Republic of Congo and how dementia may impact families. Although mainstream medicine is widely accepted and often preferred, traditional healing is also used, thus sociocultural factors and health literacy should be considered when developing public health efforts in that country.
Urban and Rural Populations
Residential location may impact stigma perception. Burgener et al.
examined stigma in urban versus rural Americans and found that people with dementia living in urban areas were more susceptible to perceived stigma and internalized shame compared with rural counterparts. Authors attributed this to a greater sense of community in rural settings. A Japanese study
found that urban dwellers may see AD as a shameful condition, although that perception improved over the four years of the study, possibly due to national awareness efforts.
U.S. Minorities
Stigma may be particularly harsh among ethnic or immigrant minorities. The literature found 10 studies focused on American minorities, including three that compared and contrasted multiple minority groups
African American, Chinese, and Latino family caregivers' impressions of the onset and diagnosis of dementia: cross-cultural similarities and differences.
Cultural factors may also worsen stigma. In a study of African American, Latino, and Chinese American caregivers, there were both overlapping and differing concerns.
African American, Chinese, and Latino family caregivers' impressions of the onset and diagnosis of dementia: cross-cultural similarities and differences.
African American, Chinese, and Latino family caregivers' impressions of the onset and diagnosis of dementia: cross-cultural similarities and differences.
noted an inverse relationship between dementia services awareness and stigma. Although stigma clearly leads to service barriers among Chinese Americans,
there are demographic factors within these subgroups that may also impact stigma. Among Chinese American men and women, women were less likely to stigmatize, perhaps because women are more likely to be caregivers.
Focus groups with African American, Chinese American, white American, and Hispanic American populations suggested that minority or immigrant groups, in contrast with white Americans, felt that a dementia diagnosis should not be shared with others outside the immediate family.
Nevertheless, there are also beneficial attributes involved with being a member of an American minority subgroup as it relates to social support. Minority families may be more likely to provide home care, and this can decrease as family cultural identification lessens over time. One study found that Latino individuals expressed concerns that diminished home care for relatives is a sign of acculturation.
Cultural or language barriers between clinicians and minority patients may impede help-seeking and treatment. One study found that African American caregivers felt that physicians did not respect their concerns.
Interestingly, in a study of African American, Chinese American, and Latino caregivers, lack of disease recognition was deemed more of a concern than language or culture barriers.
African American, Chinese, and Latino family caregivers' impressions of the onset and diagnosis of dementia: cross-cultural similarities and differences.
International Studies Focused on Minority Subgroups
Although AD stigma among racial and ethnic minorities may be greater than among the majority population in a given country, findings from U.S. minority groups likely cannot be generalized to minorities in other countries given that stigma may differ depending on information access and mainstream cultural beliefs. For example, Italian, Greek, and Chinese immigrants living in Australia had more stigmatizing attitudes compared with other Australians.
A study of British South Asians found that they tend to consider dementia as partly due to the persons themselves not trying hard enough and to a lack of family support.
Table 2 shows standardized measures used to assess dementia stigma in included studies. There does not appear to be a consistent or common stigma evaluation tool used in research. There were two instruments used to assess stigma in caregivers,
The most commonly used validated tool was the Perceptions Regarding Investigational Screening for Memory in Primary Care (PRISM-PC), which examines dementia screening attitudes.
Another key gap in dementia stigma assessment is that no standardized stigma tool was used to assess change in stigma over time in a pre–post fashion. Umegaki et al.
re-administered a structured questionnaire on dementia perceptions in a Japanese sample 4 years after the original survey was conducted, finding improvement over time. There was no specific stigma intervention in that report, however, and the study design did not permit conclusions regarding the effects of education or awareness efforts.
Prospective Experimental Approaches and Interventions that Addressed Stigma
As noted in Table 3, there were 9 studies with 10 publications that included an experimental intervention or exposure intended to prospectively assess or intervene in dementia-related stigma.
An intergenerational choir formed to lessen Alzheimer's disease stigma in college students and decrease the social isolation of people with Alzheimer's disease and their family members: a pilot study.
An intergenerational choir formed to lessen Alzheimer's disease stigma in college students and decrease the social isolation of people with Alzheimer's disease and their family members: a pilot study.
tested a real-world interaction between individuals with dementia and those without dementia (college students), whereas the other studies assessed study participant beliefs in response to an experimental exposure to hypothetical scenarios or vignettes. Nearly half of experimental reports were conducted by a single group in Israel. Interventional/experimental study quality was evaluated with a modified version of the Methodological Quality Score described by Miller et al.
Study domains scored included group allocation (0–4 scale), quality control (0–1), participant contact method (0–1), statistical analysis (0–1) and site specifications (0–1). The possible score range was 0 to 8 with higher scores indicating greater study rigor. MQS scores were variable, but generally low with an average of 4. The studies by Cheng et al.
Study quality as evaluated with a modified version of the Methodological Quality Score (MQS) described by Miller et al.65 Study domains scored included group allocation (0–4 scale), quality control (0–1), participant contact method (0–1), statistical analysis (0–1), and site specifications (0–1). The possible score range was 0–8 with higher scores indicating greater study rigor.
Cross-sectional assessment of emotional response after being presented with vignette of individual with dementia (earlier vs. later stage)
N = 206 Age: 49 + years
4
Likert-type scale assessed social distance; emotional reaction; perception of dangerousness
Person with AD does not elicit strong social rejection, but there is increased social distancing with more severe dementia. Familiarity with the disease led to decreased discrimination.
Instrument developed by investigators to assess physician emotions and attributions towards person with AD
Physicians showed discriminatory behavior towards people with AD, especially in the dimension of avoidance and coercion. Attributions of dangerousness and negative emotions contribute to these behaviors. More discrimination associated with more severe stage AD.
Cross-sectional; vignette followed by in person structured questionnaire
N = 500, Age: 18–65 years
4
Assessed three dimensions of stigma: stereotypes, prejudice, and discrimination using yes/no categories
41.6% of the participants expressed stereotypes; 43.4% prejudice; and 35.5% discrimination; 14.8% expressed all three dimensions of stigma. Level of education affected presence of stigma.
Cross-sectional assessment post-exposure to a theoretical vignette; 3 arms: A: questionnaire only B: vignettes then questionnaire C: same vignettes with info on diagnosis, then questionnaire
N = 494, Age: 18–92 years
7
11 items derived from other stigma scales
Stigma lower in those with relative or friend with dementia; in younger and more educated.
Cross-sectional on-line survey of individuals exposed to an advertising campaign and pictures/descriptions of individuals with AD
N = 1000
3
Ad campaign evaluation that included attitudes towards campaign and feelings towards the presented individuals with AD
While the dramatic death and degeneration message seemed to get the most attention, counter-framing that promoted body-mind unity and enjoyment of life's small pleasures could be reasonable alternatives. Young respondent appeared to be most in favor of the idea of a Web-based campaign.
An intergenerational choir formed to lessen Alzheimer's disease stigma in college students and decrease the social isolation of people with Alzheimer's disease and their family members: a pilot study.
8-week prospective intergeneration choir implementation with data collection at three time points
N = 26; 13 undergrad students, 6 people with early stage dementia, and 7 family members
3
Qualitative stigma evaluation
Intervention allowed people with dementia and their caregivers to lessen the feeling of isolation and stigmatization. Young people had less stigmatizing attitudes.
Cross-sectional; online survey with 2 scenarios: 1: Help-seeking for self 2: Help-seeking for significant other (proxy)
N = 611 Age: 45–60 years
3
31 item questionnaire consisting of PRISM-PC; Scale of Ageism; additional items ; Help Seeking Scale
Most participants indicated they would seek early help for themselves (82.2%) or for a proxy (78.7%). However, many would delay seeking help because of stigma.
Notes: AD: Alzheimer disease.
a Study quality as evaluated with a modified version of the Methodological Quality Score (MQS) described by Miller et al.
Study domains scored included group allocation (0–4 scale), quality control (0–1), participant contact method (0–1), statistical analysis (0–1), and site specifications (0–1). The possible score range was 0–8 with higher scores indicating greater study rigor.
exposed 619 Australian adults to a hypothetical scenario of early signs of dementia in themselves and a hypothetical scenario involving a friend or family member with early dementia. Four factors indicated dementia attitudes: 1) personal avoidance, 2) fear of labeling, 3) fear of discrimination, and 4) a “person-centered” factor that valued an individual for their knowledge, company, skills, or familiarity with traditions. Findings underscored the importance of formal providers, such as GPs, as a source of help. The authors promoted the ability of GPs to create improve public confidence that individuals with dementia will not be discriminated against.
exposed 789 adults to one of nine vignettes depicting early dementia. Conditions were labeled using one of three options, “Alzheimer's” versus “Traumatic Brain Injury” versus no label, as well as three prognostic options including improvement, static, and worsening. Four stigma outcomes were evaluated: discrimination, negative cognitive attributions, negative emotions, and social distance. The AD label in itself was not associated with more stigmatizing attitudes, although expecting symptoms to get worse (regardless of diagnosis) resulted in worse stigma. The authors suggested that stigma depends on expected prognosis and that stigma-reduction approaches need to incorporate the inherent variability in AD course and trajectory.
randomly assigned 494 adults to three groups differentiated by experimental conditions. Those who had a friend or relative with dementia, were younger, more educated, and those with a more positive expectation for individuals with dementia expressed less stigma. The authors noted the high levels of dementia stigma seen in some Asian communities as well as the positive effects of education, awareness, and contact with individuals with dementia in potentially reducing stigma.
conducted an online advertising campaign and survey testing whether defined counter-frames (conceptions that contrast with dominant thinking or attitudes) could contribute to a more nuanced image of AD. Respondents were exposed to three different photos of people with AD and messages that reflected a dominant-concept negative view of AD (death and degeneration) versus counter-frames that reflected more positive or human-centered messages. The more dramatic death and degeneration message seemed to get the most attention, but counter-framing concepts could be reasonable offsetting alternatives. Younger respondents, compared with older respondents, appeared to be most in favor of the idea of a campaign, possibly reflecting connection to the online aspect of this advertising campaign.
derived from the same study sample (206 Jewish Israeli adults), used experimental vignettes which varied by AD disease stage. Participant preferences for social distance were assessed within the context of an attributional model. Prosocial feelings decreased discrimination behavior, whereas rejection increased discrimination. The 2006 publication focused on perceived competence, which affected discrimination in the direction of lower perceived competency being related to worse stigma. In another study, Werner et al.
interviewed 501 family physicians using a computer-assisted telephone interview that featured hypothetical vignettes of individuals with different AD stages. Respondents were evaluated on discriminatory behavior, emotion reaction, attribution of responsibility, and perception of danger using a structured questionnaire building upon an expanded version of attribution theory. Two central emotions (anger-fear and pity) were found to affect discriminatory behavior.
conducted a study in which 500 Brazilian adults were exposed to a hypothetical vignette describing a person with early to intermediate AD. Stigma was assessed in three dimensions, including stereotypes, prejudice, and discrimination. All three dimensions of stigma were widely prevalent and more likely in those with lower education.
exposed 170 Israeli Arab adults to vignettes that depicted a person with dementia and then assessed their emotional response. Four dimensions of emotional reaction were observed including anxiety, aggressiveness, prosocial reactions, and rejection. Levels of education, self-reported religious identification, and perceived dangerousness of the person with AD were the main factors associated with emotional reactions.
An intergenerational choir formed to lessen Alzheimer's disease stigma in college students and decrease the social isolation of people with Alzheimer's disease and their family members: a pilot study.
tested effects of an intergenerational choir composed of college students, individuals with dementia or mild cognitive impairment, and family members of those with dementia. Qualitative data were collected at three time points over an 8-week time period. Findings suggested decreased social isolation for the older participants. Younger participants had a decrease in negative attitudes, stigma, and social discomfort, and an increase in positive attitudes. The authors suggested that shared meaningful activity lessened social distance and negative attribution that people without AD may have towards those with AD.
Discussion
This systematic review of a decade of published, original research on dementia-related stigma noted relatively few reports (N = 51), considering ongoing demographic trends. As this review was conducted in preparation for the development and testing of a future stigma reduction approach, a key thrust of the review was on 1) how stigmatizing attitudes may present in various subgroups, including in racial or ethnic minorities; 2) stigma assessment tools; and 3) prospective or experimental approaches to assess or manage stigma.
Although it is not surprising that most reports (nearly 70%) were from developed countries, it is striking that very few reports originated from the developing world. A recent publication
noted that in 2010, 58% of all people with dementia lived in countries with low or middle incomes, with this proportion anticipated to rise to 63% in 2030 and 71% in 2050, underscoring the need for new research on dementia stigma in the developing world. It must be noted that because one of the inclusion criteria in this review was that reports be published in English, a limitation of this report is that key findings published in other languages are not presented.
Stigmatizing attitudes about AD occur in both healthcare workers and in the lay public. Health providers, in particular primary care workers or GPs, are likely to be the first clinical personnel sought by individuals and families concerned about early signs of dementia. Thus the finding that some primary care clinicians or GPs have stigmatizing attitudes is a concern and research suggests that delay or avoidance of help-seeking occurs when patients and families feel that providers do not understand their needs or suffering. Providers with more stigmatizing attitudes may also fail to appropriately involve patients with dementia in healthcare decision-making. As with the general population, having a personal or family connection with a person with dementia can serve to reduce stigmatizing attitudes among healthcare providers.
Among the lay public, media portrayals of AD, which tend to present a “worst case” scenario, may worsen stigma. The literature suggests that stigmatizing attitudes are more pronounced in those with limited AD knowledge, in those with little contact with people with dementia, in men, in younger individuals, and in the context of cultural interpretations of dementia. Although research on U.S. minorities is very limited, available evidence suggests that stigma burden is higher among some minority groups, and that people with dementia and their families may feel shame and embarrassment in their communities. On the positive side, some cultural groups have more family support for elders generally, including for those with cognitive impairment. Increased acculturation among U.S. immigrants may be a potential harbinger of less family support later in life for people with cognitive decline. Given the predicted increase in minority groups within the United States, research focused on Latinos and African Americans is greatly needed. Effective communication efforts to reduce stigma should target the population broadly as well as groups that may have higher levels of misconceptions.
With respect to stigma evaluation in research, there is no uniformly accepted “gold standard”. A number of studies did not use standardized tools, making across-study comparisons difficult. As with any research tool, information gathering needs must be balanced with minimizing assessment burden on survey respondents. Stigma scales used in included studies had anywhere between 9 and 61 items, reflecting differences in domains of assessment (family stigma, societal stigma, etc.) and target population. As noted by Werner,
Stigma and Alzheimer's disease: a systematic review of evidence, theory, and methods.
in: Corrigan P.W. The Stigma of Disease and Disability: Understanding Causes and Overcoming Injustices. American Psychological Association,
Washington, DC2014: 223-244
stigma assessment tools based upon a theoretical model may help to advance progress in understanding the formative factors underpinning stigma and factors that may help to diminish stigma.
In spite of the limited research, several conclusions and recommendations can be drawn regarding the existing evidence-base on possible approaches to reduce dementia stigma. First, the relative paucity of studies is quite striking, with only one study conducted using a pre–post design with actual individuals with dementia.
An intergenerational choir formed to lessen Alzheimer's disease stigma in college students and decrease the social isolation of people with Alzheimer's disease and their family members: a pilot study.
An intergenerational choir formed to lessen Alzheimer's disease stigma in college students and decrease the social isolation of people with Alzheimer's disease and their family members: a pilot study.
enrolled only six individuals with dementia, and it is difficult to make generalizations to the wider population of people with dementia. None of the 10 studies that featured in experimental exposure specifically addressed minority groups.
Among the nine studies that used experimental vignettes, pictures, or hypothetical scenarios, it appears that providing education and support can reduce stigma. This is consistent with the World Alzheimer's 2012 Report recommendations
Individuals have beliefs about dementia that are based upon their personal experience with AD, beliefs about prognosis, as well as cultural and prevailing attitudes. Potentially promising approaches to address negative beliefs based upon existing evidence include making certain that the public understands the variability of outcomes with AD, conceptual “re-framing” to provide a more positive and nuanced understanding of AD, and involvement in shared meaningful activities that promote a focus on abilities and strengths outside of cognitive performance.
Directions for Future Research
Involving healthcare providers in anti-stigma efforts will be essential to future efforts. This is very much in line with recent efforts by healthcare professional and advocacy groups for appropriate and early disclosure of a dementia diagnosis to patients and families. In 2015, the American Academy of Neurology and the American Psychiatric Association formed a multidisciplinary workgroup to improve an existing dementia management quality measurement set and to identify opportunities to operationalize delivery of the best possible care for patients with dementia.
Importantly, a new quality measure was the recommendation that patients (and caregivers as appropriate) be provided with disclosure of the dementia diagnosis, for both the dementia syndrome and the most likely etiologic dementing disorder. The measure would be evaluated as a proportion/percentage of individuals with a dementia who have received appropriate diagnostic information. It can be expected that sites or practitioners with low rates of disclosure or those who wish to improve their quality rankings could benefit from training that specifically focuses on stigma. Training programs for general practitioners as well as geriatric specialties such as geriatric psychiatry or geriatric medicine needs to address stigma reduction in educational curricula in order to have lasting impact on our clinician workforce.
As this review emphasizes, increasing personal exposure to persons with dementia more broadly may be another way to improve stigma. Advocacy groups such as the Alzheimer's Association already make good use of personal outreach to individuals with cognitive decline (http://www.alz.org/i-have-alz/programs-and-support.asp). For example, in the Alzheimer's Association's Peer-to-Peer Program, individuals with early stage dementia are linked through a supervised telephone peer support program to share information and coping strategies, and provide emotional support. To maximize scale-up of such approaches, research is needed to develop and test whether personal exposure delivered via social media or other mass delivery platforms can effectively reduce stigma.
To test effects of stigma-reduction initiatives it will be important to validate tools in various subgroups, especially considering language, health literacy, and cultural preferences. A brief, evidence-based stigma measure that can evaluate the pre–post effect of a given intervention still needs to be developed. Finally, as there are no existing effective, data-driven approaches to combating dementia stigma, additional studies are needed to determine whether intergenerational initiatives or other approaches can genuinely modify attitudes and stigma.
In conclusion, the published literature on AD and dementia-related literature is limited, particularly with respect to evidence-based stigma reduction approaches. Future research needs to include larger and more representative samples, use validated stigma assessment tools, and build upon findings from the current evidence base.
J. Leverenz has been a consultant for Axovant Sciences, Avid Radiopharmaceuticals, Bracco Diagnostics, General Electric Healthcare, Navidea Biopharmaceuticals, Takeda Pharmaceuticals, and Teva Pharmaceutical Industries in the past 24 months. A.J. Lerner has received grant support from Axovant, Novartis, TauRX, and Eli Lilly. M. Sajatovic has received grant support from Alkermes, Janssen, Pfizer, Otsuka and Merck; royalties from Springer Press, Johns Hopkins University Press, and Oxford Press; and served as consultant for ProPhase, Bracket, Pfizer, Otsuka, and Sunovion. No conflicts of interest were declared for the remaining authors. This project was supported by an educational grant from the Cleveland Chapter of the Alzheimer's Association.
Ethnic differences in dementia and Alzheimer's disease.
in: Anderson N. Bulatao R. Cohen B. Critical Perspectives on Racial and Ethnic Differentials in Health in Late Life. National Academies Press,
Washington, DC2004: 95-141
Stigma and Alzheimer's disease: a systematic review of evidence, theory, and methods.
in: Corrigan P.W. The Stigma of Disease and Disability: Understanding Causes and Overcoming Injustices. American Psychological Association,
Washington, DC2014: 223-244
An intergenerational choir formed to lessen Alzheimer's disease stigma in college students and decrease the social isolation of people with Alzheimer's disease and their family members: a pilot study.
Attitudes toward Alzheimer's disease: a qualitative study of the role played by social representation on a convenient sample of French general practitioners.
African American, Chinese, and Latino family caregivers' impressions of the onset and diagnosis of dementia: cross-cultural similarities and differences.
Herrmann et al.1 review 51 peer-reviewed studies of stigma about dementia published over a 10-year period. Their findings demonstrate that stigma is highly prevalent among physicians, community residents, and both the patients and families that are living with Alzheimer disease. Importantly, sociodemographic and cultural factors moderate severity of stigma, with specific minority groups and younger adults demonstrating high levels of stigma. The authors point to the need for future research to better quantify stigma and study the effectiveness of interventions to reduce this obstacle to accessing care and eliminate this source of patient burden.
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