Vol. 40, No. 2 (Spring/Summer 2004)
This full-text article is provided as a member service of the Council on Social Work Education.
Maximizing Content on Elders with Dementia while Teaching Multicultural Diversity
Michael N. Kane
Mary Kay Houston-Vega
Social work education programs are required by the Council on Social Work Education’s Educational Policy and Accreditation Standards (2001) to include content on human diversity. While there is some controversy about teaching diversity and multicultural content (see Van Soest, 1995; Webster, 2002), various models to accomplish this task have been proposed (see Bowser, Auletta, & Jones, 1993; Richards, Browne, & Broderick, 1994; Roberts, Gonzalez, Harris, Huff, Johns, Lou, & Scott, 1994). Some methods teach population-specific knowledge (Devore & Schlesinger, 1999; Lum, 1992), while other models focus on oppression, poverty, racism, sexism, and other forms of discrimination (Pharr, 1996; Smith, 1997). The goal is to prepare practitioners who can assist diverse clients in ways that are consistent with clients’ personal and ethno-cultural beliefs, values, and expectations (Gallagher-Thompson, Talamantes, Ramirez, & Valverde, 1996). Knowledge of specific ethno-cultural groups includes familiarity with an ethno-cultural group’s diversity, history, culture, and contemporary reality (Davis & Proctor, 1995; Ho, 1987; Richards et al., 1994; Weaver, 1999).
The connection between ethno-cultural identity and aging needs to be strengthened in social work education (Rosen & Zlotnik, 2001; Torres-Gil & Moga, 2001). While aging content is vast, this article focuses on African American, American Indian/Native American, Asian/Pacific Islander American, and Hispanic/Latino American elders and caregivers who are affected by Alzheimer’s disease and other types of dementia. Three specific areas are considered for each of these ethno-cultural groups: (a) diverse perceptions of Alzheimer’s disease and other types of dementia; (b) barriers to service utilization; and (c) caregiving responsibilities. Finally, suggestions are offered for the use of this information in the classroom. While many people may be affected by memory impairment, psychiatric symptoms, and neurological conditions, this article focuses only on diverse elders with dementia.
Ethno-Cultural Diversity and the Memory Impairment of Dementia
The population of elders is increasingly diverse, with elders older than age 85 comprising the fastest growing age cohort in the United States (Kart & Kinney, 2001). For some, health and vigor accompany aging. Other elders may experience debilitating illnesses as they age. Dementia is a non-normative aspect of aging. The most common symptom of dementia is memory impairment (American Psychiatric Association [APA], 2000; Sadock & Sadock, 2003).
Approximately 5% of the U.S. population older than age 65 has severe dementia and 15% has mild dementia (Sadock & Sadock, 2003). The percentage with severe dementia rises to 20% for persons older than age 80 (Sadock & Sadock, 2003). Alzheimer’s disease is the most common type of dementia (Sadock & Sadock, 2003). Clinically, Alzheimer’s disease manifests as an insidious memory impairment, with other possible symptoms including aphasia, apraxia, agnosia, and disturbances in executive functioning (APA, 2000). Vascular dementia is the second most common type of dementia (Sadock & Sadock, 2003). Additionally, other types of dementia may result from Pick’s disease, Huntington’s disease, Parkinson’s disease, AIDS, Creutzfeldt-Jakob disease, and head trauma (APA, 2000; Sadock & Sadock, 2003). While the clinical course of Alzheimer’s disease and other types of dementia varies among affected individuals, there are some consistent and predictable behavioral patterns (Sadock & Sadock, 2003).
There are differing epidemiological rates for dementia among the various ethno-cultural groups. Additionally, there are differing values, beliefs, behaviors, attitudes, coping strategies, and needs related to Alzheimer’s disease and other types of dementia. This is evidenced by an expanding body of literature that describes the effect of mental health concerns, such as dementia, on diverse ethno-cultural groups. Specifically, there is ample literature documenting the attitudes, beliefs, and coping strategies for mental health concerns among African Americans (Baker, 1994; Biegel, Farkas, & Song, 1997; Broman, 1996; Caldwell, 1996; Jackson & Neighbors, 1996; Jackson & Wolford, 1992; Mays, Caldwell, & Jackson, 1996; Neighbors & Jackson, 1996; Taylor, Hardison, & Chatters, 1996), American Indians/Native Americans (Broken Nose, 1992; Chapleski, 1997; Holmes & Holmes, 1995; John, 1997), Asian/Pacific Islander Americans (Braun, Takamura, Forman, Sasaki, & Meininger, 1995; Elo, 1997; Holmes & Holmes, 1995; Kitano, Shibusawa, & Kitano, 1997; Richards et al., 1994), and Hispanic/Latino Americans (Andrews, Lyons, & Rowland, 1992; Aranda & Miranda, 1997; Biegel et al., 1997; Cox & Monk, 1990, 1993; Henderson & Gutierrez-Mayka, 1992; Hernandez, 1992; Starrett, Rogers, & Decker, 1992; Urdaneta, Saldana, & Winkler, 1995). This literature broadly focuses on the attitudes, values, help-seeking and coping behaviors of specific ethno-cultural groups as they are affected by mental health issues. Social work educators may find this literature helpful in providing diversity content regarding elders with dementia and other mental health concerns.
A comparison of three major themes in relationship to African Americans, American Indians/Native Americans, Asian/Pacific Islander Americans, and Hispanic/Latino Americans follows. These three themes are (a) diverse perceptions of Alzheimer’s disease and other types of dementia; (b) barriers to service utilization; and (c) caregiving responsibilities. Table 1 provides a summary of the information regarding each of these themes as they relate to specific ethno-cultural groups.
A Comparison Summary of Three Major Themes in Teaching About Dementia
Across Ethnocultural Groups
Diverse Perceptions of Alzheimer’s Disease and Other Types of Dementia
Both members of dominant cultural groups and those of various ethno-cultural communities often perceive erroneously that dementia is a normative aspect of aging (Gatz & Pearson, 1988; Kane, 2000, 2001; Laws, 1995; Sadock & Sadock, 2003). Elders are commonly perceived as becoming forgetful, useless, and heading for incompetence (Gatz & Pearson, 1988; Laws, 1995; Kane, 2002). The logical consequence of this ageist perception is therapeutic nihilism: the belief that because there is currently little hope of memory recovery or improvement for elders with dementia, there is little reason to invest scarce resources in elders with Alzheimer’s disease and other types of dementia (Dunkelman & Dressel, 1994). Adding to this ageist dilemma is the lack of interest in practicing with older adults, including minority elders, among social work students and social workers (Kane, 1999a; Rosen & Zlotnik, 2001; Torres-Gil & Moga, 2001).
The African American community has more elders older than age 65 than any other minority group (Lewis & Ausberry, 1996). Not unlike other ethno-cultural groups, many African Americans believe that many of the symptoms of dementia are a normative aspect of aging (Ballard, Nash, Raiford, & Harrell, 1993). While Alzheimer’s disease is the most common type of dementia in the United States, vascular dementia is the most common type of dementia within the African American community (Baker, 1994; Yeo, Gallagher-Thompson, & Lieberman, 1996). The high prevalence of vascular dementia in the African American community may be related to untreated hypertension (Johnson & Gant, 1996; Kumanyika, 1997; Yeo et al., 1996).
There are more than 500 recognized nations, tribes, and bands of American Indians/Native Americans, with at least an additional 100 non-recognized groups, in the United States (Kramer, 1996). There is significant diversity among these groups. Of great interest to public health epidemiologists and dementia experts is the statistically low rate of dementia among elder native peoples. The incidence of dementia among American Indians/Native Americans may be lower than that of any other ethno-cultural group in the United States (Kramer, 1996).
Among American Indians/Native Americans, symptoms of Alzheimer’s disease and other types of dementia are frequently attributed to normal aging and may be referred to as “old timers’ disease” (Kramer, 1996). While members of the dominant culture view wandering, agitation, hallucinations, delusions, and paranoia as psychopathological, traditional American Indian/Native American families may be less likely to do so. Instead, they may express alternate understandings of the symptoms and emphasize the spiritual dimension of the condition (Voss, Douville, Little Soldier, & Twiss, 1999). With the emphasis on the spiritual dimensions of Alzheimer’s disease and other types of dementia, spiritual remedies and shamanic healing may be sought. These strategies and alternate understandings may provide insight and alternatives to practitioners for understanding dementia through this particular ethno-cultural lens.
The term “Asian/Pacific Islander Americans” (APIA) incorporates immense diversity and includes Cambodian Americans, Chinese Americans, Filipino Americans, Hawaiians, Hmong Americans, Japanese Americans, Korean Americans, Samoans, and Vietnamese Americans, as well as people from other Pacific Islands and other Asian groups (Ho, 1987). While some APIA groups consider the cognitive and memory losses associated with dementia to be a natural consequence of aging, others believe them to be a result of culture shock following immigration to the United States (Braun et al., 1995). Braun et al. (1995) report that one member of a focus group that investigated traditional Chinese attitudes and behaviors associated with Alzheimer’s disease believed that immigration to the United States resulted in depression, loss of status and peers, and ultimately, dementia. This individual stated, “They are homesick for the food, good cultural events, and people who speak the same language” (Braun et al., 1995, p. 124).
Takamura (1991) generalizes among the many APIA groups and suggests that while elders are respected and valued, the behavioral manifestations and symptoms of Alzheimer’s disease and other types of dementia may be viewed as forms of mental illness. For members of many APIA groups, mental illness carries a stigma for the affected person and shame for the entire family. The psychiatric and behavioral symptoms frequently associated with Alzheimer’s disease and other types of dementia may bring shame and stigma to the individual and the family. Psychiatric symptoms may include delusions, hallucinations, ruminations, paranoia, and labile emotions. Behavioral symptoms may include physical aggression, agitation, pacing, wandering, disrobing, insomnia, and multiple compulsive or repetitive behaviors or both (Kane, 1999b; Steele, Rovner, Chase & Folstein, 1990). These behavioral and psychiatric symptoms may be perceived as indicators of mental illness (Elliott, Di Minno, Lam, & Tu, 1996) and result in family shame and dishonor (Elliot et al., 1996; Phillips, 1993).
The United States is home to many Latino/Hispanic immigrants from Spain, Mexico, the Caribbean Islands, Central America, and South America. While members of these ethno-cultural groups may attribute the memory impairment associated with dementia to normal aging, odd behaviors associated with dementia may be attributed to multiple causes. Many are associated with religious beliefs. Some Latino families believe that dementia is the will of God. Some believe that no intervention is helpful, because only God can cure dementia and its associated symptoms (Gallagher-Thompson et al., 1996). Still others believe that dementia is a punishment for past sins, and that both the elder and the caregiver are obliged to suffer for these sins (Gallagher-Thompson et al., 1996). While many Hispanic/Latino Americans believe that the memory impairment associated with dementia represents normative aging, behavioral and psychiatric symptoms may be attributed to “el mal de ojo” (the evil eye) or “nervios” (nerves). These beliefs are used to not only explain dementia but also to cope with the difficult experience of caregiving (Gallagher-Thompson et al., 1996).
Cuban American, Mexican American, and Puerto Rican families may verbalize similar social stigma concerns (Henderson, 1996). These families may be embarrassed when non-familial parties observe their family elder displaying behavioral or psychiatric symptoms associated with dementia. Caregivers and family members may be concerned that the community may believe that any odd behaviors of the elder are the result of “bad blood” in the family (Hernandez, 1992). Some families may fear that perceptions of family “bad blood” may have serious consequences within the local community and result in future disadvantage for the family and its connections. Thus elders, caregivers, and families may seek to evade public shame and humiliation by keeping the elder’s dementia a secret (Hernandez, 1992).
Barriers to Service Utilization
Multiple services are available for elders with dementia and their caregivers. Services may include medical care, day care, mental health care, institutionalization, meals-on-wheels, home health care, case management, physical therapy, and respite care. Many private and public agencies are involved in service delivery. Branches of the Alzheimer’s Association, which provide a vast array of information and services to elders, caregivers, and the community at large, are prominent in most areas of the country. Educators may find this association a rich resource.
In spite of their availability, there are multiple barriers to the delivery of services for diverse elders with dementia and their caregivers. These include family/caregiver ignorance of available services (Cohen-Mansfield, Besansky, Watson, & Bernhard, 1994), professional and family ignorance regarding dementia (Dieckmann, Zarit, Zarit, & Gatz, 1988), service delivery that is predicated on insurance or the ability to pay privately (Ginther, Webber, Fox, & Miller, 1993, 1994), and cultural entrenchment (Ballard et al., 1993; Braun et al., 1995; Cox, 1995).
Some research indicates that members of most minority communities are reluctant to seek services for the care of an elder family member with dementia (Ballard et al., 1993; Henderson, Gutierrez-Mayka, Garcia, & Boyd, 1993). These studies suggest that many members of the African American community do not seek outside services because they are unaware of services or because the services are provided in locations that are geographically distant from their residences (Ballard et al., 1993). Ballard et al. (1993) add that economic factors (costs, insurance coverage, co-pays, and other factors), cultural attitudes toward seeking outside help, lack of transportation to programs, and perceived lack of therapeutically effective treatment are other factors that discouraged utilization of services among African Americans.
There is scant information in the literature regarding barriers to service utilization among American Indians/Native Americans. Specifically, there is little information regarding recognition of the disease, behavioral indicators, or coping strategies among American Indian/Native American populations on tribal properties or among those American Indians/Native Americans who have moved to urban areas (Cross, 1996; John, Hennessy, Roy, & Salvini, 1996). It appears there may be few services other than institutionalization available for elders with dementia within the American Indian/Native American community (Manson, 1989). Institutionalization may be an unacceptable option among many traditional American Indian/Native American families.
Within APIA communities, one of the greatest service barriers may be linked to the shame of having an elder family member with dementia (Tempo & Saito, 1996). In some traditional Japanese American and Chinese American communities, the behavioral manifestations of dementia may suggest the presence of mental illness within a particular family. Shame for the entire family may result if behavioral symptoms associated with dementia are seen by non-familial community members. This fear of shame may discourage some traditional families from seeking professional services or treatment. This same reasoning has also been found among some traditional Filipino American families (McBride & Parreno, 1996).
There are several barriers to service utilization among Hispanic/Latino Americans. Gallagher-Thompson and colleagues (1996) investigated service barriers among Mexican Americans, Puerto Ricans, and Cuban Americans, the three largest Latino/Hispanic groups in the United States. The findings suggest that members of these communities demonstrate limited knowledge of dementia and available social services and that family caregivers experience high levels of burden and stress. Regarding available services, Gallagher-Thompson et al. (1996) found that there are few bilingual or bicultural service providers and that culturally specific educational materials to address the needs of Hispanic/Latino American caregivers are limited.
Gallagher-Thompson et al. (1996) report that, like members of the APIA community, Hispanic/Latino American caregivers may experience embarrassment and shame over their family elder with dementia. They report that some Mexican American caregivers chose not to seek professional services because they did not wish to bring shame and stigma upon the family or the family elder. This essentially required that the condition of the family elder be kept a secret. In order to keep the family’s secret, professional help and service are avoided.
Diverse ethno-cultural groups have different perceptions regarding the responsibilities of caregiving, but in general most believe that caregiving is a family responsibility. Within the African American community, a commonly held belief is that elders should be cared for at home by family and other sources of informal support (Cox, 1995; Dungee-Anderson & Beckett, 1992; Martin & Martin, 1985). Children, grandchildren, siblings, and members of the extended family may assume caregiving responsibilities. Adding to the support of family, is the support of the African American church (Taylor, Hardison, & Chatters, 1996). Members of the church may assist caregivers physically, financially, socially, and spiritually. Caregiver coping strategies may include reliance on faith and spirituality (Broman, 1996; Dungee-Anderson & Beckett, 1992; Segall & Wykle, 1988-1989). Attention to the use of extended kin relations and church support may highlight a significant difference in caregiving and coping patterns among African Americans as compared to members of other groups.
Within American Indian/Native American communities, caregiving is primarily a family responsibility (Manson, 1989). John et al. (1996) report that American Indian/Native American caregivers experience stress similar to that of other caregivers but may not experience the sense of stigma and shame reported by caregivers of elders with dementia in other ethno-cultural groups. These researchers report that American Indian/Native American caregivers are less concerned about stigma and shame as a result of an elder’s confusion or bizarre behavior, and possess an awareness that other local residents have an understanding and acceptance of the condition of the elder. This finding offers tremendous potential for discussing mutual aid among community members and highlights the respect and acceptance offered to caregivers by community inhabitants. Some American Indian/Native American caregivers may rely on traditional coping strategies to reduce the stress and burden of caregiving. Traditional spirituality may allow caregivers to find alternative meaning and value in their work. Caregivers may access traditional services such as shamanic healing for the elder with dementia. As mentioned previously, there may be few formal services available to American Indian/Native American elders with dementia living on tribal properties. If family members are unable to provide care, institutionalization may be the least desirable but only available option (Manson, 1989).
Many APIA groups, including traditional Chinese families, hold the belief that obligations toward family take precedence over individual preferences and needs (Elliott et al., 1996; McBride & Parreno, 1996; Tempo & Saito, 1996). In the traditional Chinese American community, elder parents often expect that they will be cared for in their later years by their firstborn son and his wife or by another child. With the process of cultural assimilation, some second- or third-generation Chinese Americans may be unable or even unwilling to assume these traditional responsibilities. Intergenerational conflict may result when elder parents perceive their children as avoiding their familial obligations and selfishly choosing to meet individual needs and desires. On the other hand, children who have been assimilated into the dominant culture may weigh their responsibilities toward parents and family against the backdrop of the values of the dominant culture. Additionally, these assimilated second- and third-generation offspring may feel marital, economic, and social pressure as a result of attempting to honor family obligations (Elliott et al., 1996; McBride & Parreno, 1996; Tempo & Saito, 1996). For offspring who are unable to care for a parent with Alzheimer’s disease or another type of dementia, there may be further shame if members of the traditional community conclude that the family has not cared adequately for the elder parent with dementia. Many of the same beliefs and values regarding the emphasis on family obligation over individual desires are held within other APIA communities (Braun et al., 1995; Elliott et al., 1996; McBride & Parreno, 1996; Tempo & Saito, 1996). In these traditional communities, family honor and filial piety are valued and respected above individual desires (Elliott et al., 1996; McBride & Parreno, 1996; Phillips, 1993; Tempo & Saito, 1996).
Attitudes toward family members among Hispanic/Latino groups may be similar to those of APIA communities. While Hispanic/Latino Americans are a diverse group, obligations to parents and family are emphasized over the needs and desires of an individual (Cox & Monk, 1993). Caregiving is viewed as a family obligation. In Hispanic/Latino communities, caregivers are generally one of the female children of the elder with dementia (Cox & Monk, 1993; Hernandez, 1992; Yeo et al., 1996). Like many of the APIA communities, many Hispanic/Latino communities believe that the family is the principal resource on which elders may depend and that the family must assume the responsibility of caring adequately for their elders (Starrett, Rogers, & Decker, , 1992). This family reliance takes precedence over the church and health care professionals (Cox & Monk, 1993; Starret et al., 1992).
Suggestions for Using This Information in the Classroom
It appears that while social work education has been vigorously responsive to many vulnerable groups, more attention is needed from social work educators to ensure that there will be practitioners to provide services to diverse elders with dementia. Social work educators have the power to sensitize future practitioners to the needs of stigmatized and vulnerable groups. Elders with dementia may lack the power, credibility, and voice to articulate their needs, especially in the later stages of their illnesses. Social workers are distinctly capable of assisting diverse elders with Alzheimer’s disease and other types of dementia.
Therapeutic nihilism is common among professionals when elders with dementia are discussed (Dunkelman & Dressel, 1994). Minority elders with dementia may be doubly disadvantaged as they may be affected by therapeutic nihilism and other forms of discrimination. Educators may be able to challenge these notions throughout the social work curriculum. Therapeutic nihilism, prejudice, and oppression stand in direct contradiction to the values of professional social work. Educators have consistently emphasized the intrinsic worth and dignity of all human beings and the need to advocate for resources to meet peoples’ needs.
The Social Work Practice Sequence
Generalist and other social work practice models focus on providing students with the knowledge and skills to provide service to individuals, groups, and larger systems. Practice models incorporate knowledge and skills to assess and intervene. Educators may promote the specialized knowledge and skills required for practice with diverse elders with dementia in course syllabi, classroom lectures, and discussions on clinical practice.
Important areas include assessment and intervention strategies for the ethnic minority elder with dementia as well as his or her extended family. Knowledge of the history, reality, values, and beliefs of a particular ethno-cultural group is critical, as is knowledge of available community resources.
An important aspect of assessment includes determining the acculturation of a ethnic minority elder who has dementia. The “acculturation continuum” refers to the position of the client on a continuum ranging from a traditional ethno-cultural milieu to total acculturation within the dominant society (Gallagher-Thompson et al., 1996; Henderson, 1996; Valle, 1989). Communication patterns, behavioral interactions, role performances, and the ethno-cultural group’s norms, values, and behaviors provide important assessment information that will assist practitioners in providing interventions acceptable to diverse clients (Valle, 1989). Other important information may include ethno-cultural specifics on gender, education, and socioeconomic status (Davis & Proctor, 1995). Equally important is an ethno-cultural group’s understanding of the value and social position of elders and how that value and social position are affected when the elder demonstrates symptoms of dementia. In this process, students and practitioners must develop a cautionary sense that will exclude the risk of ethno-cultural stereotyping and the expectation that all members of a particular group are similar.
Educators may incorporate specific skills used in direct practice with elders with dementia. Naomi Feil (1993), a gerontological social worker, has spent her professional career developing a practice model called validation therapy. This model incorporates 14 skills and techniques that may be used by formal and informal caregivers of elders with dementia. The purpose of these techniques is to reduce agitation and other undesirable behaviors associated with dementia while increasing engagement between the elder and the caregiver. These skills and techniques may be useful in assessment and intervention strategies. Educators may wish to become familiar with the skills of (1) practitioner centering; (2) using non-threatening factual words; (3) rephrasing; (4) using polarity; (5) imagining the opposite; (6) reminiscing; (7) maintaining genuine eye contact with clients; (8) using ambiguity; (9) using a clear, low, and accepting tone of voice; (10) mirroring emotions and behaviors; (11) linking behavior with unmet client need; (12) identifying the preferred sense; (13) appropriate use of touch; and (14) using music (Feil, 1993). The reader is encouraged to consult Feil (1993) for elaboration.
Many educators use simulated role play to teach specific practice skills to students in practice classes. Role play provides excellent opportunities to develop skills while receiving immediate supervision. While it is customary to have students role play clients with sophisticated verbal skills, some social work clients in actual agency practice may be significantly less articulate. Perhaps the more significant educational challenge in preparation for direct practice is to role play a situation where a client with dementia is confused, agitated, and expressively aphasic. Students may be asked to attempt to find out what problem this client is bringing to their attention and then consider intervention strategies. Students should be encouraged to consider multiple possible explanations for the agitation. Is the client hungry, hurting, frightened, lost, concerned about their confusion, or looking for someone? Perhaps the agitation is prompted because the client is uncomfortable and wishes to be taken to the lavatory? Multiple explanations may be possible, and future practitioners should be encouraged to consider all options. There is a need for a more sophisticated level of knowledge and skill when ethno-cultural diversity is added to this role play. Students should be encouraged to consider the concerns of diverse clients with dementia who are disoriented, yet reminisce about past occurrences. Examples might include a Japanese American elder who remembers the end of World War II, an African American elder who remembers specific forms of discrimination, a Mexican American elder who articulates memories of his or her marriage and family life, or a Cuban American elder who remembers the journey from Cuba to the United States. Students should be reminded that elders with dementia lose remote memory only in the very later stages of their illness.
Simulated role play may be useful for educators who teach social work group/mezzo practice (Kane, 2003). Students may learn group skills and techniques for reminiscence therapy/life review (Butler, 1963), music and creative arts therapies (Aldridge & Aldridge, 1992), and validation therapy (Feil, 1993). These therapies often are used in therapeutic settings for elders with dementia and other types of memory impairment. For diverse clients, group content may reflect specific ethno-cultural and generational cohort history, music, and art forms. In these group role plays, students will learn specific skills to assist these elders with dementia to preserve their sense of self.
Practice educators can emphasize how dementia is perceived by diverse groups while focusing on practice and multicultural content. This focus incorporates practice at the micro, mezzo, and macro levels. More importantly, this information will sensitize practitioners to the complexity of beliefs, values, coping strategies, and attitudes among specific individuals and various ethno-cultural groups as they understand the meaning of dementia. Meaningful comparisons among the various ethno-cultural groups can be especially important when familial caregiving behavior is considered.
Human Behavior in the Social Environment
While social work programs vary in their methods of teaching Human Behavior in the Social Environment (HBSE), the content generally focuses on normative human growth and development over the life span. In courses where human growth and development are considered from infancy to older adulthood and death, it is easy to invest significant course time on early life content. Since later-life content usually is covered at the end of these courses, minimal time may be available. Educators should plan appropriately to ensure that there is sufficient course time to cover later-life content. In particular, HBSE content should include bio-psycho-social-spiritual content on the normative aspects of multicultural aging, as well as non-normative aspects such as dementia. Attention should be directed to possible biological and psychological components of dementia, as well as to the social ramifications of dementia for diverse individuals, their families, their generational cohorts, and society at large. Focusing on the spiritual values of diverse generational and ethno-cultural groups will encourage a deeper understanding of the elder and caregiver. Students should be encouraged to review literature that discusses the ramifications of dementia for families of elders in a particular ethno-cultural group. For example, while various APIA and Latino/Hispanic groups traditionally have held elder family members in positions of honor, the behavioral and psychiatric symptoms associated with dementia may cause these same previously respected elders to become a source of family shame and stigma.
Some social work programs may include psychopathology in the HBSE sequence to comply with state licensing requirements. The Diagnostic and Statistical Manual of Mental Disorders–IV–TR (APA, 2000) lists diagnostic criteria and information for Alzheimer’s disease and other types of dementia. This information, combined with the multicultural content found in the DSM-IV-TR’s appendix I, may be used to enhance understanding of both elder diversity and dementia. The DSM-IV-TR examples include “nervios” and “mal de ojo.” Students may gain a deeper understanding of the stigma associated with a mental illness diagnosis and the effect it has on individuals and families within a specific ethno-cultural community. Students may be encouraged to mediate this type of stigma, especially through psycho-education.
Instructors should consider how best to combine micro considerations of multicultural aging and dementia with macro considerations. Areas for this focus may include diversity and end-of-life decisions, diversity and ageism, diversity and perceptions of competence/capacity, diversity and autonomy/beneficence, etc. An understanding of all of these areas will benefit future practitioners.
Social Welfare and Social Policy
Professional social work’s greatest contribution to policy change and development has come as a result of the profession’s commitment to social work values. Students may gain knowledge of and sensitivity toward diverse elders with dementia in many policy areas, including the delivery of health and mental health care services, institutionalization, and community resources. Many of these areas will eventually lead to the realization that the United States needs a comprehensive, national long-term care policy that is responsive to all people.
Institutionalization is the most restrictive form of long-term care regularly dispensed to elders with dementia (Kane, 1987). The greatest predictors of this intervention for elders with dementia are agitation and functional decline, not memory impairment (Steele et al., 1990). Generally, Medicare only reimburses skilled long-term care service providers for the rehabilitation of acute conditions. Medicaid will provide coverage when personal assets are exhausted and the elder requires institutional care for a chronic condition. While there are less restrictive options such as day care and community support services for diverse elders with dementia, many of these services are not covered by Medicare or Medicaid. There are a limited number of reimbursable service options for ethno-cultural groups that make significant efforts to keep family members at home. In general, family caregivers are not paid for helping an elder with dementia to remain at home. With increasing caregiver burden and few available options, institutional placement may be the most reasonable care alternative. This option, while sometimes necessary, frequently is a result of having too few alternatives and limited finances.
Guardianship and competence may be major policy concerns for elders with dementia. The legal process of determining competence is complicated and expensive (Kane, 1998). Some elders with dementia may never require a guardian, while others will. The literature suggests that the greatest predictors of legal guardianship are being single, female, and having assets (Kane, 2001, Kapp, 1999). Thoughtful discussions can be encouraged about how diverse elders in poverty might be affected should they need a guardian.
Educators may focus on the effects of stigma and shame on an elder with dementia and their caregiving family in specific ethno-cultural groups. Concern and interest may evolve when students become cognizant of the implications of an elder who has a serious form of dementia remaining a family secret to the extent that professional services are avoided.
Professional social work ensures and justifies its continued existence, the quality of its services, and the efficacy of its interventions through qualitative and quantitative research. It is an important function of the profession to monitor and evaluate the services it provides to all clients, but especially to society’s most vulnerable.
Carey and Hansen (1986) suggest that the evaluation of all interventions directed toward elders with Alzheimer’s disease and other types of dementia must be understood in the context “of the moment” (p. 25). This is in harmony with traditional social work values and defies proponents of therapeutic nihilism (Dunkelman & Dressel, 1994). Professional ethics and research agendas may provide students with discussion matter in a time when resources are scarce and critics perceive interventions for elders with dementia as wasteful.
Social workers are increasingly encouraged to use empirically validated assessment measures and tools with ethnic minority elders with dementia and with all other clients, (Rubin & Babbie, 2001). Tools must be reliable and developed using a diverse subject base. Professionals may use tools to measure the mental status, intelligence, functional ability, and depression of an elder with dementia. Assessing elders with dementia who are not part of the dominant cultural group requires specialized tools and measures (Loewenstein et al., 1992; Padgett, 1990) that should be at least culture-fair, if not culture free (Valle, 1989). As an example, the functional ability of elders with dementia is tested by having clients perform tasks that are perceived as necessary for independent living. Loewenstein et al. (1992) demonstrated the complexity of measuring functional ability between English- and Spanish-speaking elders diagnosed with dementia. While both English- and Spanish-speaking elders had comparable mental status, there were significant differences in their abilities to write a check. English-speaking participants had over-learned this task, while Spanish-speaking female respondents had little previous experience in check-writing. These researchers suggested that many tests used to measure functional ability are valid and reliable only for members of the dominant cultural group.
There exist multiple biases directed at elders who are not part of the dominant group in the methods and tools used to evaluate elders with dementia, especially in measures used to evaluate intelligence and mental status (Lopez & Taussig, 1991). Students will benefit from knowing that some tools were developed using the dominant group only and then simply translated into other languages. Elders who are neither native-English speakers nor born in the United States may be asked to explain idiomatic English expressions or to name past presidents of the United States without regard for education, cultural relevance, or years of residence in the United States (Valle, 1989). While these examples illustrate the challenge of instrumentation development in research, there are other examples of professionals who have made serious attempts to develop tools that are sensitive to both elder diversity and their mental health concerns (cf: Black, Auerbach, & Mogensen, 1995; Chiu, Chan, Lam, & Pang, 1996; Chiu, Lam, Pang, & Lee, 1996; Loewenstein, 1995; Pang, 1995a;, 1995b; Yeh et al., 1995).
This article has focused on the diverse perceptions of Alzheimer’s disease and other types of dementia, barriers to service utilization, and caregiving responsibilities among African Americans, American Indians/Native Americans, Asian/Pacific Islander Americans, and Latino/Hispanic Americans. Suggestions were included for educators that may better prepare future practitioners for competent practice with minority elders with Alzheimer’s disease and other forms of dementia.
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