Overcoming the Barriers of Stigma Problem Statement The stigma of dementia creates and sustains the widely held

misconception that having a diagnosis of dementia means the affected person immediately has minimal capabilities, and is no longer a whole person. Persons with dementia speak to being treated differently, leading to feelings of being devalued and discounted. Stigma creates fear, embarrassment, insecurity, and feelings of uselessness and hopelessness. Stigma perpetuates the misconception that a diagnosis of dementia is a dead end: getting a diagnosis means your life is over and nothing can be done to help or change the course. Stigma creates such fear that denial of symptoms and delay in getting help and treatment is all too common. Stigma is the first domino that starts the cascade of impact on the lives of persons affected by Alzheimers disease and related dementias. If the domino strikes to one side, persons may find access to and benefit from life sustaining and life changing support and services. If the domino strikes to the other side and doesnt connect, or if the connection is broken, persons fail to get an appropriate diagnosis, and miss out on essential treatment. Persons may receive a generalized or even misleading diagnosis, and are often left with inadequate or no resources and supports with which to deal with a cascade of crisis. The fears provoked by stigma are real and complicated not only by how the medical community chooses to assess and treat the person and her or his family, but also by society in general, as barriers are erected around economics, insurability, employability and diversity. The fear of economic devastation, not only for the person with dementia but also for her or his family, creates barriers to early diagnosis and treatment. Whether this fear is real or imagined has no bearing; the fear of losing ones job, insurance and way of life to a disease about which so much yet so little is known, can be paralyzing. Environmental factors such as low levels of education and lower socio-economic status, both of which are more prevalent for communities of color, are thought to also increase the risk of developing dementia. It is plausible for populations that have higher rates of vascular disease, lower levels of education and lack of access to quality healthcare to also have higher rates of Alzheimers disease and other dementias. This paper will seek to speak on behalf of persons diagnosed with Alzheimers disease, their families and their communities. It will seek to enlighten and empower to action, legislators, physicians, agencies and communities to end the stigma of dementia and to move our people forward in accessing life sustaining and lifesaving diagnosis, treatment and support.

Stigma Defined Erving Goffman defined stigma as the process by which the reaction of others spoils normal identity. Stigma is the responses by others that lead individuals to perceive disapproval, disparagement, lack of value or standing in society, separation. Stigma can result from the perception or attribution, rightly or wrongly, of stereotypes applied to mental illness, physical disability, sexual orientation, gender identity, skin tone, nationality, ethnicity, religion (or lack of religion) or criminality. Attributes associated with stigma often vary depending on the geopolitical and corresponding sociopolitical contexts in different parts of the world, and localized to communities and families. In their article entitled, Measuring perceived stigma in persons with progressive neurological disease, Sandy C. Burgener and Barbara Berger1 write, Link and colleagues theoretical perspectives recognize that stigma is not only an internal process (perceptions of stigmatizing behaviors exhibited by others) but a process that inherently involves the negative responses of persons in the environment, defined as the labeling behavior of others. Illnesses frequently operate as stigmatizing conditions since they represent a potential or existing physical or mental limitation. Illnesses associated with negative images result in labeling or stigmatizing responses from others (Sontag, 1978). As labeling interactions occur, persons with the stigmatizing condition take on the
Burgener, Sandy C. & Berger, Barbara. Measuring perceived stigma in persons with progressive neurological disease. Dementia Vol 7 (1) 31-53.
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perspective of others. This internalization process results in negative consequences for the person, including lowered self-esteem, decreasing social support and earning capacity, altered family dynamics, diminished psychological well-being, and increased vulnerability to the illness (Jones et al. 1984; Link et al. 1989; Link, Struening, Rahav, Phelan & Nuttbrock 1997; Miles, Burchinal, Wasilewski, & Christian 1997). As these perceptions are internalized, individuals begin to organize their lives around the stigma as it becomes central to their own perceptions of self. Burgener and Berger, in their conclusions, go on to say, The strong relationships between perceived stigma and relevant outcomes (depression, self-esteem, and personal control) support the need for further investigations of the manifestations of perceived stigma in these populations. These new understandings suggest the need for development of a variety of interventions to assist persons with AD or PD {physical disability} to manage stigma in the early disease stages. In 2005 the US Department of Health and Human Services published the report, Mentally Healthy Aging: A 2 Report on Overcoming Stigma for Older Americans. The intent of the report was to identify the impact of stigma and discrimination experienced by older adults, the barriers to eliminating discrimination and stigma, and most important, the strategies and the resources to remove those barriers. While the report generally spoke to the topic of mental illness and substance abuse in older adults, it noted the prevalence of dementia and depression as mental disorders. The identified parameters around stigma and the associated societal and medical norms are not dissimilar to those identified by those experiencing dementia. The report identifies three specific components of stigma: Self-stigma, identifying that older adults and their families may be fearful or disinclined to acknowledge the possibility of disease; Public stigma, wherein employers and the community-at-large share the viewpoint that persons with disease are of less value due to the lack of efficacy in treatment, and therefore, not worthy of employing or treating; and, Institutional stigma, by which assumptions are made about older adults with disease that translate into public policy that further discriminates against and reinforces stigma.

Self-Stigma: Juan and Minnie Juan, a Latino man in his late 60s, was experiencing some minor challenges with his driving: getting briefly lost when going to and from familiar places, not minding traffic signals and cautions, and sustaining scrapes to his car with the garbage cans and garage door. His family, having been alerted by others that they, too, had witnessed Juans unsafe driving, had hoped that he would fail his re-licensing exam, leading him, possibly to an assessment of early memory and function changes often associated with Alzheimers disease. His wife and children talked about the issues and their feelings of helplessness among themselves, but were not willing to talk to Juan personally, out of respect for his status in the family and Latino community. Instead, they hoped for a mild crisis to come along that would force him to have to surrender his license in a way that would not personally demean him, also acknowledging that this same crisis could endanger the safety of others. Minnie is a 72 year old woman, active in her community, as well as in her family, as she helps with the raising of her 5 grandchildren. Minnie was in the office of her primary care provider with her daughter for what was to be a routine exam. Her daughter was concerned about her mother becoming more forgetful, gently citing Minnie having more trouble with safe cooking, forgetting to pick her grandchildren up from school and generally seeming to be distracted. Recognizing the potential dangers for both Minnie and her family, her physician referred Minnie to a memory diagnostic clinic. Minnie angrily refused to discuss the possibility of dementia, stating vehemently that she did not have memory loss, and that if she had some help she wouldnt be so distracted. Berating her daughter for so openly sharing her personal deficits, Minnie accused her daughter of trying to take away her car, her grandchildren and her independence. Public Stigma: Glorias Story For more than 15 years, Gloria had an impeccable employment record as a school bus driver, until she was terminated by her long-time employer for excessive tardiness and absences. While employed, Gloria had become the primary caregiver for her 75 year old mom, Millie, who had advanced Alzheimers disease, and
Mentally Healthy Aging: A Report on Overcoming Stigma for Older Americans. DHHS Pub. No. (SMA) 05-3988. Rockville, MD: Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, 2005.
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her dad who had many chronic physical concerns. Although for several years, family members and friends had noticed changes in Millies ability to remember, she was not diagnosed until she was in the very latest stages of the disease. Recognizing the changes, Gloria had moved in with her parents to be more readily available, and eventually to become her mothers primary caregiver. Gloria attempted to maintain a full-time job while caregiving for her mother and her father, but with increasing frequency found herself unable to balance the spontaneous needs of both of her parents and the obligations to her employment. Glorias job was her sole means of financial support. The very small transportation company for whom Gloria worked, while friendly and concerned for Gloria to an extent, showed no awareness of the need to and benefits of supporting employees who were family caregivers. The company did not offer family medical leave, support resources or even flexible scheduling for its employees who were also caregivers. They seemed to understand none of her personal or financial burden. Although she had lost her only means of income as well as a part of her small support structure, Gloria was relieved to some degree to be able to just focus on caring for her mother and father without the overwhelming guilt of always being late or calling in to work that was also causing her to experience her own physical ills. Despite having 5 siblings, Gloria did not receive any respite or financial support from other family members. She was the only one who was single, so it was assumed that she didnt have any of the pressures or desires of a social life, the raising of children, or even of time to herself. This lack of a social or support network also failed to connect her to a professional support network, nor did her mothers physician recommend the availability of outside resources. Since the passing of both of her parents, and now in her late 50s, Gloria has continued to unsuccessfully seek employment. Her age, lack of job skills, her own chronic disease processes and the decimation of her financial resources have made her search all the more desperate. Her sense of stigma as having been a caregiver, instead of bolstering her feelings of self-worth and pride, has led her to feel devalued, severely depressed and without any sense of belonging. Her now chronic health conditions, likely made worse by the unrecognized and unsupported burden of caregiving, largely go untreated until her pain is unbearable. The need to seek care in the emergency room because she has no health insurance, and feeling yet another aspect of public stigma by those who care for her, lead her further into personal and financial devastation. Over a course of months and years, the role of an unpaid and unsupported caregiver can consume a persons life, causing overpowering stress and the breakdown of marriages, deterioration of ones own health, and the loss of employment and all of the securities that come with it. Caregiving takes a financial and emotional toll, leaving hundreds of thousands of individuals feeling helpless, impoverished, and depressed and if not appropriately addressed will impose negative social and financial devastation on society. Institutional Stigma: The Journeys of Two Daughters One daughter of a woman diagnosed with young onset dementia shared this about her mothers hospitalization: Mom and I had always been best friends, had more of a partnership than a mother-daughter relationship. When we learned of her dementia I thought that would continue, with me just every now and then helping her to make some decisions. She bought a house closer to where our family lived, drove herself to the grocery store, the bank and to some appointments, sat with my girls when I couldnt be home to meet them after school. She continued to make her own decisions, for the most part, but more often just asked what I thought, and seemed a little more tentative about life in general. Then she entered a psychotic phase that no one could really explain. Doctors tried new diagnoses on her, but these really only explained her symptoms, didnt really fit with what her history had been. I think they just couldnt acknowledge to me and my mom that they didnt know. They sent her home with referrals to new specialists and more meds to take. They told me that I needed to get legal decision-making in order, as this was likely the beginning of a terminal phase for Mom, and that she would likely never again be competent to make her own decisions. I had already been declared her power of attorney for health care decisions and financial matters, but I was advised that she would need a guardian, due to her refusal to accept any supports. Surprisingly, this went smoothly through the courts, but I was later told that it was likely because my mom had plenty of financial resources, which led me to really question how vulnerable someone with assets might be if those working on their behalf might not have the purest of motives. I had already researched dementia, so now I started a new hunt, to try to make sense of this new side to Mom, but I never really found anything that fit even more than 50%. I talked to experts, I tapped into support groups. My mom grew more psychotic, to the point where she accused me of stealing her money and trying

to kill her, and, unbelievably to me, accused me of sexually abusing my children. One day she got into her car and drove to her bank, withdrew all of her money, drove to another city a couple of hundred miles away and opened new accounts. When she got home she called a realtor and put her house on the market. All of this without talking with anyone at all, and in each case fully assisted by those she contacted. She called me at all hours, with terrible accusations. Painful as it was, I stopped answering her calls sometimes, and just hoped that she was OK, that it had been another call of accusation and not a call for help. None of us could live this way. Moms doctors continued to say this was decline typical to someone with young onset, though this isnt at all what I found in my research, and said she needed to be in a nursing home. People in the long term care field that I talked to said she would be a poor candidate for any nursing homes in my area, maybe even in the state, as she was too physically fit, too functionally independent, too willful. Nursing homes would be afraid to accept her, fearing they would be unable to manage her. Mom was finally hospitalized and placed on the psychiatric unit. We went through still more tests, still more questions, more meds. Mom got quieter, not so manic, but the accusations about me continued. She looked like my mom, but the words that came out of her mouth that were supposed memories of my interactions with her and my family were foreign to me. Stigmatized? You bet! When I would visit her the nurses looked at me and treated me as though they fully believed every word mom told them. I felt like I had actually done those horrible things: I felt guilty, remorseful, shamed, and knew I had no reason for those feelings, but then I realized that I felt them about how helpless I had been to help Mom. Another daughter, a college professor, talks about her fears and feelings associated with her fathers dementia. Her father, also college-educated, developed frontal lobe dementia, and consented to assessment only because his doctor threatened to write a letter having him removed as a licensed driver if he refused. Dads challenges relative to his dementia were complex: he was frequently in contact with law enforcement for traffic violations, publicly fighting with and threatening his neighbors and strangers, for shoplifting groceries that he accused others of hiding in his cart. His daughter described him as prideful, arrogant and always in control, and perceived that his behavior escalated when he was under pressure or felt that he was being unduly scrutinized by others. She and her husband, also a college professor, also refused to accept Dads diagnosis. After all, Dad remained wellspoken, and especially when he was angry never failed to communicate what he was feeling or thinking. He never appeared to be disheveled or unclean, never seemed to have a vague look about him, which was her perception of what persons with dementia looked like. She refused all encouragement from her fathers doctor to seek support and education, indicating that Dad was really just not wanting to acknowledge that he was aging. Her fathers dementia progressed and his behavior worsened to the point where he couldnt be left alone. One evening he thought he heard a prowler in his basement, and while going to investigate, fell down the basement stairs, suffered a head injury and died several days later. The daughter later confided that she now lived with the guilt for praying for just such an accident, sparing her the degradation of having to visit him one day in a nursing home.

The Current Culture of Stigma As a country that truly embraces and promotes independence and taking care of oneself, the right to live alone in ones home is deeply engrained in our culture. According to the 20120 U.S. Census, approximately 11.3 million Americans 65 or older live alone. Studies have indicated that there are approximately 800,000 people with Alzheimers disease living alone in the U.S. People who live alone with Alzheimers or related dementias are at greater risk of having delayed or missed diagnosis which can lead to unnecessary burdens and missed opportunities for medical treatment. Those living alone with the disease are at greater risk of self-neglect, falls, wandering and becoming lost, lifethreatening injuries and increased social isolation. Those who are living alone also are more likely to be placed into a nursing home earlier than those who are living with others, greatly impacting the cost of health care to both individuals and taxpayers. There are special challenges in caring and supporting people with Alzheimers and related dementias living alone which may require unique and creative ways of connecting with this population. A community approach to care that involves community education and outreach in addition to engaging nonmedical agencies and organizations such as the postal service, banks, barber/beauty shops and local food stores to

train employees to identify individuals that need further assistance and make referrals to agencies may be 3 helpful in reaching this otherwise isolated population. The evolution over time of gender differences and the associated responses to recognizing the need for health care and the acceptance of associated services necessitate an ongoing assessment of the appropriate supports and strategies to minimize roadblocks to obtaining the earliest possible diagnosis. Studies and national surveys around a variety of health concerns have indicated that women are presently more apt to go to the doctor when they first notice changes or troubling symptoms. In general, women appear to have a greater familiarity and more experience with health care systems and medical providers than do men. Women have a higher medical care service utilization history than men.4 Other studies have indicated that women may have a greater awareness of body signals, may experience a higher intensity of symptoms, are better able to describe symptoms and have a greater willingness to report symptoms than men. Men on the other hand seem to be less affected and aware of early symptoms or may minimize the significance of initial symptoms when they occur. In addition women may be more likely to seek out professional and informal assistance for personal and mental health challenges. Men typically have a tendency to guard feelings and remain silent with an I can handle it alone attitude. These gender differences might suggest several implications for encouraging early diagnosis. They may also suggest that successful communication and awareness campaigns for women may best focus on descriptions of warning signs alone. Men on the other hand may need communication in addition to a description of warning signs that emphasizes how ignoring early signs may negatively impact the ability to best maintain control or take charge of the experience. Men have traditionally been socialized to have a strong sense of self-reliance; to be stoic, in control, confident, in charge and more concerned with thinking than feeling. In addition, men are expected to be responsible providers for their families. Given this gender socialization, the thought of a diagnosis of dementia has the potential to threaten a mans sense of self-esteem and significantly impact the desire to get a diagnosis. Therefore, the aspect of stigma may be heightened or more intense in men. This may suggest that in order to successfully address stigma for men, communication and awareness campaigns may need to emphasize how obtaining an early diagnosis enhances a mans ability to better maintain his self-reliance and confidence. Women tend to have more of a focus internally on personal and family relationships and issues. Men on the other hand tend to focus more on matters outside the home, on financial success and world issues. In addition, contemporary manhood standards seem to nourish a problem-solving style of coping, including 5 managerial type strategies. These differences may suggest additional ways for overcoming stigma and encouraging early diagnosis. One might be to emphasize that early diagnosis is the way to insure that the person can be in charge and in control of planning his and his familys financial future. In addition to destigmatizing disease, early diagnosis is also the door to education, understanding and the development of individual strategies to plan and problem-solve issues and again, better control the experience. Early diagnosis, treatment and support also open the door to involvement in research as a means of impacting world health issues, and help for future generations. The lack of fully reliable science in diagnosing and treating Alzheimers disease and related dementias may be one of the most pervasive of barriers to eliminating stigma, particularly among communities of color. Without culturally sensitive assessment tools, definitive diagnostic criteria and reliable and predictable treatment options, persons who suspect their own disease will continue to avoid diagnostic affirmation. Families and friends will continue to explain away the symptoms of young onset disease, attributing changes in mood, behavior and function to stress, depression, mid-life crisis, job change, or any host of circumstances aiding denial. Even fewer physicians will choose geriatric or geropsychiatric practice, perpetuating treatment already based more on guesswork and instinct than on science. The lack of an educated and sensitive community will perseverate the jokes, stereotypes and denial of rights that already marginalize persons diagnosed and their families. Uneducated and unsupported providers of long term care services will result in the continual movement of persons with dementia from facility to facility, in and out of hospitals and the legal system, even away from home and family, resulting in further decay in function, and the impoverishment of families and communities.
Alzheimers Association. 2012 Alzheimers Disease Facts and Figures, Alzheimers & Dementia, Volume 8, Issue 2 Bertakis et al, Journal of Family Practice 2000 5 Men as Caregivers: Theory, Research and Service Implications; Kraemer and Thompson editors, 2002, Springer Publishing
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These challenges may be particularly true of diverse communities, many of whom are already subject to racism, stereotypical epithets, low education and low income. Some communities take the view of Alzheimers as part of the aging process, while others, such as the Hmong, might embrace the sometimes delusional and hallucinogenic behavior of Alzheimers as a gift or a means of communicating with spirits long-since passed into a new world or life form. In the Native American community initial studies appear to show dementia caused by alcoholism to be more prevalent than Alzheimers type. In all cases, the decision to seek assessment, treatment or support relies heavily on what has been inculcated by culture, economic status and culturally competent access to needed services. African American, Latino, Hmong and Native American Communities and Dementia Recommendations for Change There is identified a need for increased participation of members from ethnically diverse populations in all aspects of research. For example, research has yet to fully explore the influence of environmental and health care disparities on vascular risk factors in particular, toward the development and management of Alzheimers disease and other dementias. This development would include culturally and linguistically sensitive assessment tools to meet the various literacy levels among African American, Latino, Hmong and Native American elders. Understanding the interaction of the sociological constructs and the biological mechanisms of dementia will help communities to understand and appropriately respond to the disproportionate impact of dementia in diverse communities. Undertake efforts to reach isolated and undereducated families who may know only stereotypes about aging and dementia. Advertising experts must develop messages for all forms of mediaprint, radio, and television, which speak to those most in need of the information, in a language and construct that will be relational and empowering. Educate and empower community health care providers and volunteers. Educate health care providers and public health personnel to recognize, assess, diagnose and treat Alzheimers disease and other dementias in ways that show cultural competence and that are supportive of the unique needs of minority families. Health professionals can offer health screenings, medical services and information about diet and lifestyle changes that might reduce the risk for Alzheimers disease. Develop initial screening tools for use in clinics where the provider is seeing many people in a short period of time and therefore may not have the time to do a complete battery of memory tests. Educate other health care and public health professionals to conduct memory screenings at various sites and identify appropriate reimbursement for all providers to screen patients for the earliest signs of dementia. Educate the general public on dementia. In the diverse communities include community leaders, caregivers, volunteers and church leaders to enable them to share information with their communities. The goal is to educate communities of color to enable more persons to seek preventative and ongoing medical care, thus reducing the co-morbid conditions that are linked with Alzheimers disease and related dementias. Specific Strategies In Milwaukee, WI a community advisory board was developed targeted to communities of color. Participants included lay people, professionals tested by the disease, as well as persons with dementia. The goal was to bring together diverse stakeholders to receive education about current research and related issues, in order to become ambassadors of change. Community partners, largely made up of organizations and institutions of learning, also come together to speak to colleagues, who then take information back to their areas of expertise, dispersing it into action. Already, lay members of the community speak to and act on a better understanding of the outcomes of research, acknowledging that the way to research is via education, awareness and the elimination of stigma. At family meetings where persons gather to talk about dementia, communities become gatekeepers for keeping the research true and meaningful to the community of color. Among the next steps discussed are thoughts to take the concept to other areas of the state and outside of communities of color, but where barriers exist for some of the same reasons, in addition to issues such as ruralness and lack of parity in access to research and diagnostic services. A valuable and viable result is the creation of liaisons within communities that are not only respected by the medical community, but that also serve to translate messages, lead efforts and mobilize key stakeholders who also become advocates and ambassadors, given the tools for effective change making. In the LaCrosse area a workgroup of long term care providers, advocates and community resource agencies have begun dialogue around the unique challenges that persons with dementia who are Hmong encounter in trying to access residential and community-based services.

Why Change is Important The number of maturing adults in the United States is increasing substantially due with the graying of the Baby Boomer generation. At the same time, the proportion of ethnic minority elders is also increasing. The number of Hispanic elders is expected to increase from 7 percent of the total U.S. population to 20 percent by 2050. African American elders will increase from 9 percent to 12 percent in the same time period. Although Alzheimers disease research has progressed over the last 25 years, very little is known about why African Americans and Hispanics are disproportionately affected by this disease. According to the Alzheimers Association African-American are twice as likely as Caucasians to have Alzheimers. Hispanics, the fastest-growing segment of the U.S. population, are 1.5 times as likely. The increased prevalence of Alzheimers disease for these two communities appears to be a complex interaction of biological and socioenvironmental variables. Age has been cited as the number one risk factor for developing Alzheimers disease, though vascular disease may also be a factor. Little research has been conducted on co-morbid conditions, known to be prevalent in Hispanic and African American populations, such as diabetes, hypertension and hyperlipidemia, and whether or how much these might increase the risk of developing vascular dementia. A study of older Mexican Americans found that type-2 diabetes and hypertension contribute more to dementia in this ethnic group than in people of European ancestry. Studies have found that people with hypertension or high cholesterol are twice as likely to have Alzheimers disease. In a memory clinic in Milwaukee of the 106 patients who have been seen, 41% have diabetes, 81% have high blood pressure and 55% have hyperlipidemia. Due to the high amount of co-morbid conditions very few patients have been diagnosed with pure Alzheimers disease. Culturally, communities of color often hold a belief that the person is just getting older and this is a normal part of aging with no recourse. Old timers disease is a term often used by African Americans to describe an individual with memory loss. In a survey, African American and Latino respondents showed a high acceptance of cognitive impairment and dementia as a normal part of aging to be managed solely within the family, and the majority felt that placement in a care facility was not an acceptable option. Additionally, African American and Hispanic caregivers reported that they did not know enough about the disease to recognize the symptoms.6 Further, Latino caregivers often view the stress of care giving as an expected part of the familial role and are also less likely than other ethnic groups to admit that care giving is too demanding. The majority of Hispanic respondents felt, particularly daughters and other female relatives, that it was their responsibility to take care of their loved one. Thus, Latinos with dementia overwhelmingly remain living in the community longer and with higher levels of physical and cognitive impairment when compared with their non-Latino white counterparts. Latino caregivers are more likely to be younger, poorer, less educated, underemployed, and in significantly worse mental and physical health than their white counterparts. Changes in a persons memory may be seen but it may not be discussed, in order to avoid being disrespectful or as a result of the distrust of health care professionals. From the perspective of the primary care provider this may be viewed as being non-compliant but in reality the only concern is one of respect for the affected person. When memory loss begins to contribute to changes in mood, behavior and function that cause agitation, aggression or wandering, the lack of prior diagnosis, treatment and support can lead to life-changing and even life-threatening outcomes. One study of older Hispanics, most of them Mexican-Americans, found personal beliefs, language proficiency and economic status to be the most frequent perceived barriers to health care, early diagnosis, treatment and support. Among the well-documented barriers to care are: limited English proficiency cultural biases in cognitive testing relative to inadequately standardized and linguisticallyappropriate diagnostic tools lack of bilingual professionals inadequate access to health insurance when compared to non-Hispanic contemporaries, resulting in more than 25% of Hispanics, age 50 to 64, who have a chronic condition being uninsured Latino caregivers, in particular, constitute a group that historically has underused dementia-specific care services. One study found that 40% of foreign-born elderly Hispanics had undiagnosed cognitive symptoms for 3 years or more When speaking about personal attitudes concerning dementia, African Americans report to be more concerned about the stigma attached to the disease than are other ethnic groups. One study which looked
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Ethnically Diverse Communities and Alzheimers Disease: A Public Health Issue by Stephanie R. Johnson

at cultural factors that prevent people from seeking medical care for Alzheimers disease found that African American caregivers cited racism among the health care community as a primary concern. African American caregivers share with other populations of color the impression that the signs and symptoms of dementia are a normal part of aging and, out of respect for the elder, will seldom take formal action unless a crisis occurs that results in an entrance into a health care system that does not seem to recognize or serve their cultural needs satisfactorily. Caregivers in the African American community are likely to be the adult children of the person with dementia. Studies have shown that the caregiver is often caring for more than one person, with responsibilities as well for the care of children, grandchildren and other extended family members. Given the overall expected increase in the number of elderly people of color, Alzheimers and other dementias present a major public health crisis posing significant social and economic burdens on individuals, families and communities. Stigma of Alzheimers Exacerbates Marginalization of the LGBT Communities The Lesbian, Gay, Bisexual and Transgender (LGBT) communities often perceive themselves as invisible and marginalized persons. Persons who are LGBT are a minority made silent by years of stigma imposed by familial, religious, health care, education, military and legal systems. Even now in the 21st century, many forty-five year old and older LGBT individuals choose to continue to withhold their sexual orientation and/or gender identity. With a diagnosis of Alzheimers, those who were private and selective in revealing their orientation/gender identity continue to hold fears based on past health care experiences in which their needs were not met respectfully and responsively. Recommendations for Change Educate health care professionals about how stigma has impacted the avoidance of the health care system among persons who are LGBT. Blend that education with what is known about stigma and other diverse groups, changing attitudes, approaches and language to effect greater cultural competency. Provide health clinic professionals and volunteers education on recognizing and screening for early signs of dementia. Listen to and use the language of the individual when completing forms, performing assessments and working with persons in clinical and other health care settings. Develop community and health care education programs aimed at increasing sensitivity to how relationships are referenced; empower persons in the LGBT community to gain trust in communities and health care providers that enable them to share essential specifics such as partner status, living situation and other critical components of support and treatment. Sensitize those who provide and protect intimate care to the needs of all, so that the appropriate attention is paid to respect and dignity regardless of gender or sexual orientation. Examine and make the appropriate changes to legislation to enable life partners access to health care and legal information and action. Pay the same attention to benefit systems, insurance and financial institutions so that impoverishment of a life partner is no longer a concern. Why Change is Important According to Jan Singer, MSW, LCSW, of SAGE/Milwaukee, the LGBT populations have been stigmatized by the health care community for many decades, which has led to a lack of trust and delays in seeking health care, making early diagnosis of Alzheimers or other dementias impossible, thus jeopardizing the quality of life and the effectiveness of treatment. Individuals may demonstrate difficult, angry, and fearful behaviors toward physicians and other medical professionals. These behaviors are frequently caused by fear, confusion and feelings of vulnerability, perpetuated by the sense of stigma already felt by the LGBT community, and often based on past experiences and the experiences of others. Persons who are LGBT share instances where health care providers in turn become hostile, seem arrogant and dismissive, resulting in the individual once again experiencing earlier life traumas by the health care community and avoiding needed care and support. Out of fear of judgment or even retaliation, LGBT individuals may choose to withhold necessary information from which the health care community might benefit. Knowing relationship status, a partners name, living
Kennard, C. (2008, December 3). Health Guide. Gay, Lesbian, Bisexual and Transgender People Disease.
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with Alzheimer's

situation, and other vital information could help better support the person diagnosed during the sometimes difficult transition from diagnosis to support. The use of the word married, often found on forms and assessments, can be a distancing word for someone of the LGBT community. Asking a person if she or he is or was married and then assuming the partner is of a particular gender can be offensive, as well as a sign of ignorance and unwillingness to learn to use gender responsive language. The historically marginalized individual may become even more fearful, resistant and seemingly uncooperative leading the professional to only see an angry patient, not recognizing their own contribution to the distancing mechanism. Persons who are LGBT often have not disclosed their status to their families. They may be hesitant about naming their partner as a power of attorney for health care or financial matters, leaving their life partner outside of the family, hampering social, health care and legal decisions, and ultimately, running the risk that the persons wishes may not be recognized and honored. The thought of entering a long term care facility as a person who is LGBT and who has dementia causes great fear and distress. Persons envision not only being physically separated from their life partner, but also emotionally separated, fearing retaliatory treatment by caregivers and family alike if the relationship somehow becomes known. Being separated from a life partner whether one is LGBT or straight, can have lasting negative impact on mood, behavior and function, exacerbating the process of dementia by depression, anxiety and even fear for safety. Similarly, personal preferences, attention to appearance, and other opportunities for intimate knowledge about the person often go unknown and unacknowledged and both physical and psychosocial needs go unmet during not only a critical stage of life, but also a last stage of life. Stigma in the Medical Community Physicians report feeling stigmatized for whatever course of treatment they may take with their patients with dementia. If they take the time and resources to diagnose and treat aggressively, they may be accused of wasting time and expensive resources on a disease process that cannot be definitively diagnosed and treated with any certainty of response. This is sometimes coupled with a belief by some that these resources are wasted on a segment of the population that no longer has value. In the words of one physician, These are no longer tax paying members of society so we shouldnt be wasting dollars that could be used for people that really need them. Those physicians who refuse to diagnose and treat state they do so due to a lack of affirmative research that validate aggressive diagnostics and treatment. These physicians feel stigmatized as they face labels of being uneducated, uncaring or even discriminatory against patients that they feel they cannot cure or treat with even modest success. Physicians may also report that the emotional attachment to a patient who has been treated by that physician for decades can make it extremely difficult to have a conversation about a diagnosis of dementia. Physicians may be prone to focus on possibly more tangible symptoms being experienced by the patient without having a solid conversation aimed at intervention of other issues in the context of a specific diagnosis. Other health care professionals face stigma not only in their communities, among their friends and families, but most especially and most surprisingly, in their own workplaces. In their communities their roles are often seen as dead-end or of low value, even though they provide the most intimate of care and are responsible for the all-important well-being of both their residents or patients and their families. They report being shunned at social events when they talk about their jobs, and often really cannot even talk about their jobs for fear of divulging confidential information about those for whom they care. In their assisted living residences and nursing homes they are among the lowest paid employees of health care, and are frequently given no more specialized training than other employees of the facility, even though they work with persons who have infinitely more complex needs than other residents or patients. They often work in some of the most unattractive areas of the facility, as facility owners are reluctant to provide an aesthetically pleasing living space for people who dont know any better anyway. Admission to residential care facilities for persons with dementia can also be a challenge, as they are often the consumers of the most resources, but garner the lowest reimbursement rates, unless there are complicating medical conditions to increase the rate, but which also complicate the care. Uncertainty with regard to accessible community support should a person require psychiatric services or even in-patient acute care has led some residential care providers to no longer accept in their facilities persons diagnosed with Alzheimers disease or related dementias. In residential long term care settings persons with dementia who display the behaviors that are often symptomatic of the disease, up and wandering at night, vacillating mood and function, striking out at

caregivers who are perceived as complete strangers and who are trying to perform the most intimate of care, often lead persons to be labeled as combative, violently aggressive, disruptive. By their own peers they are bullied, called names, openly shunned, often while support staff observe but do not act. Hospital staff and advocates note cases where nursing home residents who display challenging behaviors symptomatic of dementia are sent to the hospital with vague medical complaints, and then refused readmission. Providers indicate they would rather risk a citation than continue to care for persons who require more resources than the facility feels it can afford.

Caregivers in the Home, Caregivers in the Workplace Serving as a caregiver for a person with Alzheimers or a related dementia poses special challenges in that 8 care is often physically and emotionally draining and can extend over many years. Characterized initially and throughout the middle stages of the disease by significant losses of memory, judgment, awareness and communication, the later stages of the disease pose greater challenges and many risks when faced with difficulty in eating and swallowing, mobility and for some, changes to mood and behavior, all of which increase the emotional, physical and financial burdens of caregiving. Even in the earliest stages of disease caregiving can be a more than full time role for caregivers already struggling to balance pressures of work, caregiving for other family members with needs, and their own personal health challenges as they also mature. Recommendations for Change Educate and sensitize the employment and insurance communities to enable and protect those who can work, both caregiver and person diagnosed alike. Eliminate the fears of loss of insurance or employment, of impoverishment of self and family, of dependence on others. Encourage the offering of options such as flex-time, telecommuting, job sharing, and other worker-sensitive approaches to balancing work with caregiving and disease management. Through a supportive work environment, encourage employees to use resources such as Family Caregiver Support Networks, Senior/elder care locators, employee assistance programs, 211, Area Agencies on Aging, Aging and Disability Resource Centers, and other community-based resources. Partner with the Alzheimers Association and other related entities to offer employee wellness programs such as the Alzheimers Early Detection Alliance to offer employee education and awareness about Alzheimers and provide support to employee caregivers. Equip and empower caregivers with the most current knowledge and strategies. Put in place mechanisms that provide continuous real-time information as both medical and psychosocial research advance, as well as opportunities for caregivers to come together to share challenges and successes, increasing the capacity of their toolkits for understanding and living with dementia. Work together as communities to develop formal and informal support networks that embrace both caregiver and person with dementia, building on remaining strengths and abilities, and developing capacity for coping with continued change. Locate and make public those companies of all sizes that offer a caregiver-sensitive work environment. Incentivize employers through public policy to provide a caregiver-sensitive work environment. Incentivize employers to offer appropriate and sufficient pension and retirement programs, along with education to assist employees on how to make wise and beneficial decisions for retirement planning. Why Change is Important Families and life partners feel stigmatized by the reactions of others to hearing of the suspected diagnosis or the symptomatic behaviors described in day to day conversations. They may be counseled out of jobs, as their responsibilities as caregiver may cause tardiness and absenteeism, diminished concentration on work, use of Family Medical Leave Act time that takes them out of a work rotation. According to the Alzheimers Association 2012 Facts and Figures, family caregivers who are of working age and take care of Alzheimers and other dementia family members, range from under 35 64 years with 56 percent in the age groups between 45 and 64 years. Approximately 56 percent of unpaid caregivers were 55 or older and 67 percent of that category had less than a college degree. Despite, their education, 55 percent of these caregivers tended to be the primary breadwinners of their household, and nearly half were employed full or part time. Half of these caregivers lived in the same household as the person for whom they provided care. Thirty percent had children under
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Alzheimers Association. 2012 Alzheimers Disease Facts and Figures, Alzheimers & Dementia, Volume 8, Issue 2.

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18 years old living with them which means that they are simultaneously providing care for two generations. Additionally, almost half of caregivers take care of parents and as high as 17 percent take care of their spouse. According to the 2012 Alzheimers Disease Facts and Figures report, eighty percent of the care to persons with Alzheimers disease and related dementia is provided by unpaid caregivers, often family members, in the home. Nationally, there are over 15 million unpaid caregivers. In Wisconsin, there are over 188,000 caregivers providing over 2 billion hours in care. With regard to paid caregiving, in 2011 Medicare and Medicaid paid $140 billion toward long-term care costs. As the percentage of older Americans continues to grow, the number of caregivers for loved ones with chronic diseases such as Alzheimers will also continue to grow. There are psychological, physical, social and economic impacts to this trend. Caregiving responsibilities have a dramatic economic impact on both men and women through lost wages due to either reduced hours worked or leaving the labor force early and diminished Social Security benefits or private pensions. Prior studies have presented a range of estimates for the impact on lost wages and pension benefits from $303,260 to $659,139 over caregivers retirement years. U.S. businesses are also highly impacted by the status of their caregiving workforces. A 2004 National Alliance of Caregiving/AARP study funded by MetLife estimated that each year, businesses suffer a $29 billion loss in productivity due to caregiving, equaling approximately $1,142.50 per employee. Employees 9 who are also caregivers account for nearly 75% of early departures and late arrivals at the workplace. Caregivers often make long telephone calls while at work to handle caregiving issues, and suffer more stress- related illnesses than do their non-caregiving peers. They use the companys health care plan more frequently, and if are not offered health insurance through an employer, stand a greater chance of loss of employment due to illness-related absenteeism and chronic disease states. In a new report released by the American Psychological Association, Stress in America10, survey results showed that caregivers reported having poorer health than those who were not caregivers. The survey also highlighted that older adult caregivers as a special group were particularly vulnerable to the burdens of caregiving on their health. Moreover, there have been studies to indicate that this stress could have a negative impact on a caregivers existing health conditions. There has been evidence to suggest; however, that caregivers who are supported through interventions, could decrease caregiver stress and lead to 11 reduced health care costs overall. The trend of grandparents raising grandchildren poses particular challenges when the custodial grandparent has dementia. According to the 2010 census, 25,617 children in Wisconsin live in homes where grandparents are responsible for their grandchildren. When the grandparent develops memory loss, regardless of whether or not they identify the symptoms they may be struggling with, they may not seek medical care for several reasons. The person affected may believe that the memory loss is not a problem because they continue to care for their grandchildren, with only minor difficulties. Grandparents may also neglect to self-report memory loss due to the fear that the children will be taken out of their custody, or that siblings may be separated should the grandparent no longer be able to provide care. Without diagnosis, treatment or support a task as simple as driving a child to a baseball game or a piano lesson becomes a situation of dangerousness for all involved.

The State of Public Policy The fear of economic devastation, not only for the person who may have dementia, but also for her or his family, creates barriers to early diagnosis and treatment. Whether this fear is real or imagined has no bearing; the fear can paralyze people and contributes to the stigma associated with dementia. People fear that if they are diagnosed with dementia, their health insurance provider might terminate coverage. Or if a person loses a job due to the diagnosis of dementia, thereby losing health insurance, she or he will now be uninsurable due to a pre-existing condition. COBRA coverage is often unaffordable.

Balancing Work and Caregiving: A Guide for Employers, Carolyn S. Wilken, University of Florida, IFAS Extension American Psychological Association. Stress in America. Online version available at www.stressinamerica.org. Mausbach, BT, von Kandel, R, Roepke, SK, Moore, R, et al. Self-efficacy buffers the relationship between dementia caregiving stress and the circulating concentrations of the proinflammatory cytokine interleukin-6. American Journal Geriatric Psychiatry 2011; 19(1): 64-71.
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Once diagnosed, purchasing life insurance or long term care insurance, to secure the financial future of a spouse and/or young children, will no longer be an option. Retirement savings are exhausted on basic care and services, and then eventually Medical Assistance becomes the payer source. The Medical Assistance Spousal Impoverishment laws do offer some protection for the spouse and/or young children, however these are minimum standards. Caregiving responsibilities can affect the spouses employment, further jeopardizing financial security. Consumer laws provide some slight protections. However, with the ever present political debate about the future of health care, it is understandable that people would fear the threat of un-insurability, and therefore refrain from seeking early diagnosis and treatment. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) offers some consumer protections, making it easier to change jobs without fear of losing health coverage for a preexisting condition, but the law has limitations. For instance, HIPAA does not require that employers offer health coverage, it does not guarantee that any conditions a person now has (or may have had in the past) are covered by the new employer's health plan, and it does not prohibit an employer from imposing a preexisting condition exclusion period if the person has been treated for a condition during the past 6 months. This last limitation implicitly discourages early diagnosis and treatment of dementia. The Patient Protection and Affordable Care Act of 2010 (PPACA) could address some of these limitations. The PPACA promises to expand access to health care coverage and offers protection to adults who have been refused insurance coverage because of pre-existing conditions and who have remained uninsured for at least six months. These individuals would be eligible for the Pre-Existing Condition Insurance Plan. The program covers primary and specialty care, prescription drugs and hospital visits without requesting higher premiums for pre-existing conditions. These protections are not tied to employment. However, at the time of this writing, the PPACA remains under legislative scrutiny and challenges with a threat of revocation of part or the entire Act pending the outcome of the upcoming election. Public policy is needed that assures consumer protection and requires transparency by insurance providers. Health care policy that alleviates the fear of un-insurability, and clearly promotes early diagnosis and treatment of dementia, could allow for better planning related to personal resources, ultimately minimizing reliance on public resources.

Language Changes Action When persons with dementia talk about stigma and its impact, they use words such as, dark, fear, abyss, hopeless, and worthless. Recommendations for Change Initiate Public Awareness and education campaigns that include strategies aimed at altering language, perceptions and stereotypes. Change the stigma and focus of diagnosis from a death sentence to quality of life after diagnosis. Educate health care professionals and volunteers to enable them to coach patients and families in language that is empowering versus debilitating. Encourage persons to think about the process of dementia as one that is chronic and hopeful versus that of a hopeless disease. Help persons adopt attitudes such as that quoted from Pat Summitt, former coach of the Tennessee Lady Vols, You dont quit living, you deal with the change. Emphasize living with or working through AD, rather than battle or fight language. Study and use language that might resonate best with various groups of people, enabling strong and effective communications between patients, families and practitioners. Change the words used to describe dementia. Teach communities to eliminate stereotypes, jokes and words that degrade and devalue. Teach language changes in medical schools, public schools, and support groups. Emphasize with caregivers the language they can use to communicate with physicians, and educate physicians to listen below the level to signs of change and difference in mood, behavior and function. Develop coalitions of persons diagnosed and caregivers willing to talk publicly about what it feels like to be a person diagnosed or a caregiver, how it feels to hear insensitive jokes, stereotypes. Attend (early stage) support groups to get ideas about how to change language.

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Normalize the discussion around Alzheimers disease and dementia. Educate individuals and communities to understand that dementia is a disease process like any other, deserving of thorough and accurate diagnosis, treatment and support.

Specific Strategies In Wisconsin, the Alzheimers Associations and related advocacy organizations teach curricula addressing the language used to describe the disease and its complexities, helping paid caregivers learn how their words convey attitudes and actions, and how changes in language can be impactful. Increasingly, advocates and educators are using Thomas Kittwoods Elderspeak model to illustrate the impact of language on the translation of attitude into caregiving. The model looks at the words used in daily life to describe people, places and things, and how words translated into caregiving actions can impact personhood and the caregiving relationship. Why Change is Important Until the early 1980s, dementia was often thought to be just normal aging for some. Dementia and its symptomatic behavior and changes in mood, behavior, function and memory loss was minimized by the label old-timers disease. This label is still used today, most often by those who have forgotten a word or an incident, and laughingly refer to their own loss as the beginning of old-timers. Persons with dementia are further stigmatized and devalued through insensitive jokes about memory loss that portray persons with dementia as those with function and awareness akin to a toddler. They are patronized, stripped of civil rights, and tucked away into whatever long term care facility will care for them, often at great emotional and financial expense to the individuals and their families. In his article entitled, Finding Joy in Alzheimers, author and family member Robert Leleux wrote, I routinely hear right-minded, enlightened folks, who would never think of labeling a child retarded, describe people with Alzheimers as having lost themselves, as being already gone, or even, as members of the living dead.

Conclusions Like any disease process, much of stigma is born out of generational stereotypes, shared negative experiences, beliefs based in culture, race, faith and gender, and experiences with lacking medical and social services communities. Persons affected talk of being counseled out of jobs that previously gave them worth, value and income. They are excluded from social events, are given fewer challenges and are often treated, even by those who know them best, as children who require constant vigilance instead of as the once powerful citizens and leaders of families and communities who were sought out for their opinions and expertise. Overcoming the many noted barriers to stigma has the potential to overturn all of the negative outcomes and experiences previously noted, contributing to the health, safety and well-being not only of individuals, but also of communities. These monumental changes can only be accomplished with collaboration and determination that refuse to allow further barriers to be erected in the name of professional territorialism, political advancement or fiscal shortcuts. Advocates, especially those who are among the diagnosed and their family members, need to have their stories heard by those who not only can but will move those stories into that collaborative action, who will not be deterred by the same challenges that have kept change from taking place for decades, those same challenges that have only continued to multiply as the demographics of aging adults have continued to grow. To summarize, there are tangible options to minimizing stigma and moving persons affected by dementia into that cascade of successful diagnosis, treatment and support. These options require only the support and creativity of those who are willing to lead and those who are willing also to be led. They require that those in positions of leadership and change-making are open to hearing the stories of persons affected by dementia, and who will courageously commit to helping to change the stigmatizing experiences that have perseverated for generations. We do this by: Finding and promoting role models who can address living with the disease as a chronic condition as opposed to a death sentence, and by empowering persons diagnosed to see dementia as a chronic disease that they can live with, maintaining function and quality of life as research moves forward in meaningful ways. Communities should develop a speakers bureau of champions who

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are willing to speak in the day to day, not just as a part of a conference or special event, so that Alzheimers becomes an accepted and acceptable word in our daily dialogue. Developing and implementing a Take Control campaign, by which persons diagnosed and their life partners are empowered to take ownership for their own disease and how it is impacted by the interventions at hand when offered as early as possible. Changing the words used to describe dementia by eliminating stereotypes, jokes and words that degrade and devalue. Educating and sensitizing the medical community to see persons with dementia as the whole person, not as a diagnostic code, not as a problem behavior, not as medically unworthy of time and resources. Have persons diagnosed tell their stories to medial students, and volunteer in diagnostic clinics to give immediate peer support to persons newly diagnosed and their families. Building capacity into residential long term care by providing continuous education, support and compensation to workers, by recognizing the unique challenges of caring for persons with dementia and their families, and by supporting fully those challenges, by creating environments that support as opposed to those that imprison and disempower. Shifting paradigms to those which recognize ability versus loss. Educating and sensitizing the employment and insurance communities to enable and protect those who can work, both caregiver and person diagnosed alike, by eliminating the fears of loss of insurance or employment, of impoverishment of self and family, of dependence on others. Building communities that are culturally competent in talking about and caring for persons with dementia of all cultures and life experiences. Equipping and empowering caregivers with the most current knowledge and strategies, by putting in place mechanisms that provide continuous real-time information as both medical and psychosocial research advance, as well as opportunities for caregivers to come together to share challenges and successes, increasing the capacity of their toolkits for understanding and living with dementia. Engaging in full-scale marketing campaigns to re-brand the issues around stigma, and the words Alzheimers disease and dementia. Including dementia education in public schools as required curricula, including discussion on the impact of emotional memory, cognitive reserve, and how to have a relationship with someone with dementia. Mandating training for law enforcement and EMTs, First Responder professionals and volunteers about dementia and responding to persons with needs for law enforcement support. Partner with organizations with like concerns for training in order to be inclusive and respectful of the time and priorities of law enforcement professionals. Engaging with policy makers and media in ways that bring to life the impact of dementia as a public health issue, fully identifying the consequences of failing to act meaningfully and intentionally; by enabling demonstration projects that seek to promote choice and participation in all aspects of the life of the person with dementia, and that elevate the issues related to dementia to action that is fully supported both philosophically, legislatively and fiscally.

In the Spring 2012 issue of Perspectives12 , newly-diagnosed Robin Leckie writes, All those isolated moments of memory loss, confusion, and indecision now had a reason in the same way as when we have a complaint and make a doctor's appointment and part of us hopes the complaint will still be there when we arrive. I was the same person before the appointment as after; I still looked the same. But now I knew I was faced with an uncertain future. Respectfully submitted by: Jonette Arms, Milwaukee County Department on Aging Julie Button, Board on Aging and Long Term Care Gina Green-Harris, UW-Wisconsin Alzheimers Institute Kim Kinner, Alzheimers Association of Greater Wisconsin Kim Marheine, Board on Aging and Long Term Care Gail Morgan, Alzheimers Association, Southeastern WI Chapter Mary Reines, Alzheimers and Dementia Alliance of Wisconsin, Retired Teresa Skora, Milwaukee Health Services, Inc. Virginia Zerpa, Alzheimers Association of SE Wisconsin Guidance by Kristen Felten, State of Wisconsin, Department of Health Services
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Shiley-Marcos Alzheimers Disease Resource Center. Perspectives. Volume 17, Number 3

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