A new curriculum to address dementia-related stigma: Preliminary experience with Alzheimer’s Association staff

Abstract

Objective

Develop and test a stigma awareness and education curriculum targeted to non-medical staff of a local Alzheimer’s Association chapter.

Methods

The curriculum, developed in collaboration with leadership and educational staff from the Cleveland Chapter of the Alzheimer’s Association, included a definition, types, and domains of stigma; effects of stigma on individuals with dementia and their families; stigma evaluation studies; tips to address the topic of dementia-related stigma with individuals and families. Lastly, an interactive discussion of real-life scenarios facilitated stigma recognition and management.

Results

Most staff felt the training improved their ability to identify Alzheimer’s disease stigma, made them more comfortable talking about stigma, and would change the way they interacted with people and families impacted by Alzheimer’s disease.

Conclusions

This brief, practical educational curriculum has potential to improve awareness of dementia stigma in Alzheimer’s Association staff. Research is needed to expand stigma awareness in individuals and groups with varying levels of dementia knowledge.

Keywords

stigma discrimination Alzheimer’s disease dementia aging

Introduction

The projected increase in both absolute numbers and relative proportion of people with Alzheimer’s disease (AD) and other dementias brings to the forefront the challenges that can be expected for individuals and families living with these conditions (National Institute on Aging, 2011). In the United States, the Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support, and research and provides an array of support and services including education, support groups and access to on-line communities (“Alzheimer's Association, http://www.alz.org/).

Stigmatizing attitudes towards individuals with AD and other dementias are common and are a potential barrier to care and support, which can impact help-seeking and community inclusion (Blay & Toledo Pisa Peluso, 2010; Burgener et al., 2015). A recent systematic review of dementia-related stigma research conducted by our group of investigators suggests that broadly implemented evidence-based stigma reduction approaches are not available to communities generally, and research on how best to address dementia-related stigma has been limited (Herrmann et al., 2017). Our systematic review also found that even those with extensive experience with dementia, such as health care professionals, can at times inadvertently exacerbate stigma and that attitudes about dementia from formal or informal care providers can impact people with dementia and their families. (Brannelly, 2011; Cahill et al., 2008; Gove, Downs, Vernooij-Dassen, & Small, 2016; Lahjibi-Paulet et al., 2012; Piver et al., 2013; Vernooij-Dassen et al., 2005; Werner & Giveon, 2008).

Given that reducing dementia stigma potentially leads to more support and a higher quality of life for people with dementia and their families, it is critical that practical approaches that are amenable to broad scale-up be developed and tested. This brief article describes an educational pilot program conducted at the request of a local chapter of the U.S. Alzheimer’s Association. The educational program was a quality improvement project intended to raise stigma awareness and help Alzheimer’s Association staff address stigma in their interactions with people with dementia and their families and care providers. The local institutional review board (IRB) determined that the project did not qualify as human subject research according to U.S. Federal regulations, specifically in being an educational and training curriculum under 45 CFR46 or 21 CFR 56. Findings are intended to inform the development of a stigma education approach that can be formally tested and potentially delivered to members of the community with experience with AD and other dementias.

Methods

This program was funded by an educational grant from the local chapter of the Alzheimer’s Association. The stigma awareness and education curriculum was developed by university researchers with expertise in health behavior, aging/dementia, health communication, and in collaboration with leadership and educational staff from the Cleveland Chapter of the Alzheimer’s Association. The curriculum was informed by findings from a systematic review of research on dementia-related stigma from the last decade, with a particular focus on interventions intended to assess and reduce dementia-related stigma (Herrmann et al., 2017). Program evaluation on the topics of AD knowledge, attitudes, and stigma was either adapted from standardized instruments identified in the review or were standard Likert-type questions intended to evaluate staff satisfaction with the program.

Stigma awareness and education curriculum

The curriculum consisted of four main components, delivered over 2.5 hours. Part 1 included a brief introduction, orientation, and overview of the training purpose (15 minutes). Part 2 was a 30-minute presentation of dementia stigma based on findings from the systematic review of dementia-related stigma. Key points of this presentation included the definition of stigma, discussion of types and domains of stigma, effects of stigma on people and families dealing with dementia, and a review of existing interventions that featured an experimental dementia-stigma assessment. Part 3, delivered by the study health communication expert (LH) provided practical tips and advice on how one might address the topic of dementia-related stigma with individuals and families. Figure 1 illustrates some of these topics. Part 4 featured a series of sample scenarios, derived from the behavioral health expert’s (MS) experience working with patients and families dealing with dementia. The example scenarios were followed by an interactive discussion of stigma recognition and management, as well as how consumer-oriented organizations like the Alzheimer’s Association might provide resources and materials aimed at reducing stigma and its impact. Figure 2 illustrates one of the curriculum scenarios followed by discussion questions.

Figure 1.

Health communication approaches to address dementia-related stigma.

Figure 2.

Case-based scenario: The reluctant card player.

Assessments

A brief battery of assessments was conducted by the educational delivery staff prior to and immediately after participation in the educational program. All program evaluation was conducted anonymously, and there was no attempt to link any survey responses to a given individual. Demographic evaluation and an assessment of AD knowledge were administered prior to the curriculum delivery. Assessments on dementia stigma that staff expected people with dementia to encounter were conducted pre- and post-program. After completion of the curriculum, staff were assessed on their perceptions of how the program might impact their own future behavior and/or practices.

AD knowledge

AD knowledge was assessed at baseline with the validated self-reported 30-item Alzheimer’s Disease Knowledge Questionnaire (ADKQ), developed by Carpenter and colleagues (Carpenter, Balsis, Otilingam, Hanson, & Gatz, 2009). Internal consistency (coefficient alpha 0.71) is adequate, as is test–retest reliability (coefficient 0.81). Scores range from 0 to 100% with higher scores indicating greater knowledge of AD.

Dementia stigma

Program attendees completed a modified version of the self-reported lay public portion of the Family Stigma in Alzheimer's Disease Scale (FS-ADS), developed by Werner and colleagues (Werner, Goldstein, & Heinik, 2011). Validated in a sample of 185 adult children of adults with AD, the FS-ADS has demonstrated acceptable internal reliability with coefficient alphas of 0.66–0.97 in 8 of 9 factors (Werner et al., 2011). In the original scale and in this training exercise, participants rated items on a 5-point Likert-type scale (1= Not at all; 3 = somewhat; 5 = very great extent). Higher scores for negative items indicate more stigma. We administered three of the FS-ADS stigma domains including: (1) 12 items assessing the degree of structural discrimination participants expected individuals with dementia to encounter (for example, unhelpful clinicians and lack of community services); (2) 18 items assessing expectations regarding emotions (antipathy, pity and supportiveness) directed at the person with dementia; and (3) 6 items that evaluated the social distance or avoidance the person with dementia might be expected to encounter.

Stigma awareness, comfort in talking about stigma, and perceived impact on interacting with people with dementia and family members

Four post-program questions on the topics of stigma awareness and impact on interacting with individuals and families were evaluated on a five-point Likert-scale (1 = very likely, 3= neutral, 5= very unlikely). Higher scores indicate lower awareness and less change in behaviors or practice. Write-in post-program comments were also assessed.

Data analysis

We conducted descriptive analysis of demographic, knowledge, and practice variables. Pre-post scores compared item group means and standard deviation. Similar to a dementia stigma study by Johnson and colleagues (Johnson, Harkins, Cary, Sankar, & Karlawish, 2015), we categorized stigma items measuring emotional reactions into three subscales: antipathy (e.g. disgust; repulsion; fear), supportiveness (e.g. concern; compassion; willingness to help), and pity (e.g. sympathy; sadness; pity) on the basis of a principal components analysis. For antipathy items, higher scores indicate more antipathy. For supportiveness items, higher scores indicate more support. For pity items, higher scores indicate more pity. All social behavior questions were focused on negative behaviors, with higher scores indicating worse/more stigmatizing behaviors. Structural factors were categorized as negative/discriminatory (forcing treatment, mocking individuals with dementia) or supportive (available community services, professionals who help caregivers, etc.). Higher scores on discrimination indicate more discrimination or access problems, while higher scores on support indicate more support. Means were calculated for each stigma sub-scale by summing totals and dividing by the number of items in each domain.

Results

Overall sample description

Table 1 shows demographic characteristics of the 21 staff who participated in the training program. The sample was predominantly female, white, and well-educated. While the group had extensive personal experience with AD, none were currently caregivers of a person with AD. Consistent with their extensive familiarity with AD and dementia, scores on the ADKQ (only conducted pre-program) were relatively high, with a mean of 88.25% (SD 12.68%) with a range from 43% to 100%.

Table 1.

Demographic description of Alzheimer’s Association chapter staff participating in a stigma awareness and education curriculum.

Variable	All survey respondentsN = 21
Age in years—Mean (SD)	45.62 (13.12)
Gender—n (%)
Male	2 (9.5%)
Female	19 (90.5%)
Race—n (%)
White/Caucasian	17 (81%)
Black/African American	3 (14.3%)
Don't know/did not answer	1 (4.8%)
Ethnicity—n (%)
Hispanic	1 (4.8%)
Non-Hispanic	20 (95.1%)
Education—n (%)
Grade 12 (High school graduate)	0 (0.0%)
College 1 to 3 years (Some college or technical school)	4 (19.5%)
College 4 years or more (College graduate)	17 (81.0%)
Alzheimer’s disease exposure—n (%)
Family member with AD	5 (23.8%)
Friend with AD	1 (4.8%)
Past family member with AD	12 (57.1%)
Cares for someone with AD	0 (0%)
No answer	3 (14.3%)

AD: Alzheimer’s disease.

Stigma

Table 2 shows mean scores on the FS-ADS with respect to emotional reactions (FS-ADS 1), social reactions (FS-ADS 2), and structural discrimination (FS-ADS 3). The majority of sub-scale means did not change when comparing pre/post scores, except for the support item, which showed a decrease after the training, indicating stronger belief that individuals with AD have limited support from others.

Table 2.

Pre- and post-program group means on portions of the Family Stigma in Alzheimer's disease Scale (FS-ADS).

Variable on stigma scale	Paired pre-exposure	Paired post-exposure	PairedMean difference	95% confidence interval of the difference(lower bound)	95% confidence interval of the difference(upper bound)	One sample t-test(P)
(FS-ADS 1)a
Emotional reaction
Antipathy	3.09 (0.46)	3.23 (0.44)	−0.15 (0.75)	−0.60	0.31	0.497
Supportiveness	3.78 (0.53)	3.32 (0.51)	0.45 (0.77)	0.07	0.83	0.022
Pity	1.30 (0.25)	1.19 (0.22)	0.11 (0.32)	−0.05	0.26	0.166
Total emotional scoreb	2.90 (0.33)	3.08 (0.27)	−0.18 (0.48)	−0.48	0.13	0.23
(FS-ADS 2)
Behavioral/social reaction	3.09 (0.48)	3.24 (0.49)	−0.15 (0.60)	−0.42	0.12	0.26
(FS-ADS 3)
Structural discrimination	2.20 (0.38)	2.25 (0.47)	−0.05 (0.62)	−0.34	0.24	0.724
Structural support	2.90 (0.41)	2.90 (0.44)	0.00 (0.62)	−0.30	0.30	1.00

^aAll FS-ADS sub-scales are presented as mean scores with possible range for each item being 1 (not at all) to 5 (all the time). Higher scores indicate more stigma/discrimination/negative attitudes except for the supportiveness sub-scale where higher scores indicate more support.

^bSupportiveness sub-scale items were reverse-scored to yield a total emotional reaction wherein higher scores indicate more stigma/discrimination and less support.

Post-program perceived effects on comfort with discussion about stigma and plans to change behaviors

Table 3 shows proportion of participant responses regarding comfort with stigma identification, perceived impact of this program on comfort with talking about stigma, and likelihood of interacting with people with AD and their families differently because of the program. Notably, the majority of program participants (90–96%) felt that the experience helped them better identify AD stigma, eased their comfort talking about sigma, and would change the way they interacted with people and families impacted by AD.

Table 3.

Perceived impact on stigma identification and likelihood of change in behaviors.

Question	N (%)	N (%)	N (%)
Likelihood that I will be better able to identify AD stigma	Very/somewhat likely95.5(%)	Neutral0 (%)	Somewhat/very unlikely4.5 (%)
Degree that training has impacted comfort in talking about AD stigma	Much/somewhat more comfortable90.9 (%)	Neutral0 (%)	Somewhat/much less comfortable9.1 (%)
Likelihood that I will change the way I interact with people with AD	Very/somewhat likely95.5 (%)	Neutral0(%)	Somewhat/very unlikely4.5 (%)
Likelihood that I will change the way I interact with family members of people with AD	Very/somewhat likely95.5(%)	Neutral0 (%)	Somewhat/very unlikely4.5 (%)

AD: Alzheimer’s disease.

Discussion

This educational curriculum appeared successful in its intended goal of raising dementia stigma awareness and increasing advocacy staff’s confidence in interacting with patients and families around the issue of AD stigma. The majority of Alzheimer’s Association staff felt the training helped them to better identify AD stigma, made them more comfortable in talking about sigma, and would change the way they interacted with people and families impacted by AD. Because this was a program evaluation of a pilot educational curriculum as opposed to a rigorous prospective research project, observations must be tempered by the methodological limitations, including a sample large enough to conduct formal hypothesis testing. Additionally, findings cannot be generalized to individuals or groups who have less experience or familiarity with AD and dementia.

As expected, in a group of individuals with extensive experience with AD and dementia, base rates of AD-related knowledge were high. The average percentage of knowledge questions answered correctly (88%) was higher than reported for samples that included students (67.3%), the lay public (68%), and older adults (80%) (Carpenter et al., 2009; Johnson et al., 2015). Because the training was targeted to a group of individuals with substantial experience with dementia, it did not include extensive review of AD and dementia. In the future, if this program were to be administered to groups with less knowledge of AD, adding more discussion of factual information on dementia and supports available in the community may be beneficial.

Based on pre-post assessment of a standardized stigma scale, no significant change in awareness or identification of structural or social exclusion aspects of stigma after the training curriculum was observed. Findings on the emotional reaction elements of stigma suggested that participants were more likely to endorse the presence of limited support to people with AD because of stigma. It is possible that the training helped improve awareness of the varied and sometimes subtle presentations of stigma that can impede support and help-seeking in families and communities. However, when we combined the emotional response items (antipathy, pity, and supportiveness), we did not see an overall mean change after the training. It is possible that a relatively brief training curriculum may have limited impact on standardized measures of stigma awareness in individuals who already have high knowledge and experience with AD.

There are several points worth noting with respect to future work and implications. The curriculum is relatively brief (2.5 hours) and potentially amenable to broad scale-up given standardized materials. Alzheimer’s Association staff positively endorsed the interactive, case-vignette format that provided a platform for discussing different types of stigma and this may be an ideal way to address “courtesy” or spill-over stigma that families of individuals with AD and dementia may experience. In our pilot work, the curriculum was delivered in a single session, which was practical and efficient; however, this may have limited the amount of information that was digested or appreciated. If the program is to be adapted for use in groups with less AD and dementia familiarity, it may be helpful to deliver the information over multiple meetings for a shorter period of time for each individual session.

Interpretations of our findings have several limitations, most notably a small sample with relative homogeneity with respect to gender, ethnicity, and dementia experience. Participants’ overall high familiarity with AD limits generalizability. In spite of these limitations, it appears the curriculum may help individuals who already have some familiarity with AD and dementia to more specifically address this important topic that impacts the lives of individuals with AD and their families. This practical stigma awareness curriculum has potential to improve recognition of the varied and sometimes subtle presentations of stigma that can impede support and help-seeking in families and communities. Future opportunities for testing and broader-scale up need to be explored in rigorous research designs that allow for formal hypothesis testing. Finally, it will be important to develop and test stigma awareness and reduction approaches that can be used to address AD and dementia stigma in individuals and populations that have limited or no knowledge or familiarity with these conditions.

Data access

Any questions about potential access to the data can be directed to the study lead author.

Footnotes

Declaration of Conflicting Interests

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: MS served as consultant for Cognition Group, ProPhase, Bracket, Pfizer, Otsuka, and Sunovion.

Funding

The author(s) received the following financial support for the research, authorship, and/or publication of this article: This project was supported by an educational grant from the Cleveland Chapter of the Alzheimer’s Association. MS has received grant support from Otsuka, Alkermes, Janssen, Pfizer, and Merck, royalties from Springer Press, UpToDate, Johns Hopkins University Press and Oxford Press.

Martha Sajatovic MD, is Professor of Psychiatry and of Neurology at Case Western Reserve University School of Medicine in Cleveland, Ohio. She is a researcher, educator, and clinician who is Director of Geropsychiatry at University Hospitals Cleveland Medical Center (UHCMC) and holds the Willard Brown Chair in Neurological Outcomes at UHCMC/Case Western Reserve University School of Medicine

Nancy Udelson is the President and CEO of the Alzheimer’s Association Cleveland Area Chapter. Having joined the organization in 2007, she directs a staff of more than 30 and oversees the implementation of the Alzheimer's Association's strategic plan in the chapter’s five-county service area. Nancy is a member of the Advisory Board of Northeast Ohio Boomer and Beyond magazine.

Lynn K Herrmann has a PhD in community health with a health behavior focus and a kinesiology minor. She also has an MPH with a health promotion concentration. As a professor, her research interests generally relate to the social aspects of exercise and development of health communication efforts. She also teaches health promotion courses.

Cheryl Kanetsky is currently the Executive Director of the Alzheimer’s Association Greater East Ohio Chapter, based in Hudson, Ohio. She has been employed with the Association as a passionate Alzheimer’s advocate since 1999 and has served in a variety of roles that include management, program delivery, development and evaluation, strategic planning and grant writing. Her undergraduate degree in Psychology and Social Work and her master’s degree in Business Administration has led to unique expertise in non-profit social service business operations. Cheryl has worked in the field of aging for 25 years and is active in many advisory committees that support the work of organizations who serve seniors and those with Alzheimer’s disease and other forms of dementia.

Hongyan Liu PhD is a biostatistician in the Department of Neurology and the Neurological and Behavioral Outcomes Center at Case Western Reserve University School of Medicine in Cleveland, Ohio. She has a Master of Applied Statistics at The Pennsylvania State University and PhD of Veterinary Medicine at The Ohio State University.

Kristin A Cassidy MA is a Research Operations Manager in the Department of Psychiatry and the Neurological and Behavioral Outcomes Center at Case Western Reserve University School of Medicine in Cleveland, Ohio. She has a Master of the Arts in Experimental Research Psychology with an emphasis in Gerontological Studies.

Elisabeth Welter is with the Mandel School of Applied Social Sciences at Case Western Reserve University (CWRU) and formerly with the Neurological and Behavioral Outcomes Center at CWRU and University Hospitals Cleveland Medical Center. She has 15 years of experience in clinical research and over 10 years of experience in basic research. She holds an MS in cell biology from McGill University, Montreal, and an MA in biomedical ethics from CWRU.

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