Cultural Considerations for Dementia

Overview

Working with individuals who have dementia is within the scope of practice for SLPs. Sociocultural differences will influence perspectives on the cause of the disease, as well as intervention and treatment. Further, cultural values and beliefs affect caregiving experiences related to the amount and type of care provided and the type of care and support sought within and outside of the family system (Dilworth-Anderson & Gibson, 2002).

This website explores how cultural values and beliefs affect perceptions of dementia and aging, the role of caregivers, and long-term care in the following cultures: mainstream American culture, African American culture, Hispanic and Latino cultures, and Chinese culture.

Background on Dementia

Click on the link above for background information on dementia. This information provides a current framework for understanding dementia. It aids in understanding the cultural considerations explored below.

Cultural Values and Caregivers

It is important to consider cultural values when working with caregivers because they have a significant role in dementia care. Healthcare professionals involve caregivers in the plan of care and rely heavily on them to implement strategies and recommendations. Cultural values may vary from caregiver to caregiver; thus, healthcare professionals must be sensitive to these belief systems to have successful interactions and treatment. Several implicit barriers make it difficult for caregivers to implement these strategies.

Bourgeois and Hickey (2009) report that psychosocial variables such as relationship with the person with dementia, gender, ethnicity, social stigma and feelings of failure, lack of knowledge of services, fear of the cost of services, possibility of patient refusal, and lack of transportation have been shown to hinder treatment. Other barriers include dissatisfaction with services and differences in opinions about the focus and intensity of caregiving tasks between the caregiver and professionals. These barriers tend to affect the quality of care a person with dementia receives. Furthermore, the time it takes the caregiver to understand caregiving challenges and the accessibility of appropriate resources for dementia care is significant. The researchers looked at the length of time it took caregivers to attempt a strategy a healthcare professional provided them. In some cases, it took 6-12 months before the caregiver could attempt to implement a strategy. These results reflect variability between caregivers in overcoming personal barriers, beliefs and values, and family dynamics.

Recognizing potential barriers to treatment and understanding the caregiver's lifestyle, values, and goals is crucial. Ethnographic interviews and appropriate assessment tools can aid in determining caregiving characteristics and values. Toth-Cohen and colleagues (2001) have identified four fundamental factors to support caregivers: understanding the meaning and importance of the home for the family, considering the caregiver as a “lay practitioner”, identifying and acknowledging the caregiver’s beliefs and values, and recognizing the demand characteristics of the services provided.

Considerations When Working With Specific Cultures

The dominant mainstream culture impacts perceptions of dementia treatment and caregiving, microcultures, and individual and family experience. By understanding mainstream perspectives and understanding specific cultures, clinicians can observe similarities and differences and use this information in assessment and treatment planning. However, it is important to remember that an individual’s cultural membership does not necessarily mean that they subscribe to all of the beliefs of that culture.

Similarities across cultures

Individuals and caregivers across cultures have reported several similarities related to dementia onset, diagnosis, and treatment. A lack of information about early signs of dementia, attribution of early dementia to normal aging, and diagnosis challenges with medical providers were reported by caregivers as difficulties in providing appropriate support to persons with dementia (Mahoney et al. 2005; Gallagher-Thompson et al., 2003). These researchers report that most caregivers across cultures could pinpoint the event when they realized behaviors were attributed to an illness rather than normal aging. When caregivers needed support, they turned to family members rather than friends or the community. Although these reported similarities in caregiving for dementia are important for developing treatment goals, providing education to caregivers and family members, and building awareness around dementia, providers should be cautious when making broad generalizations. There is great variability in cultural values and beliefs within cultures and across caregivers.

Mainstream American Culture

Perceptions of dementia and aging

Western culture has shaped the dominant mainstream American perceptions of dementia and aging. In this view, great value is placed on independence and individualism. In his exploration of cultural differences in Being Mortal (2014), Atul Gawande points out that in American culture, it is becoming increasingly common for children to leave home and establish lives far from their parents, providing them with more freedom and control over their own lives. As people age, independence continues to be of the utmost importance until a crisis requires a change in priorities. He notes that people “naturally prefer to avoid the subject of their decrepitude” (p. 35), and there is a significant value placed on youth and continuing to look young. While modern medicine allows people to live longer and healthier lives than ever before, it also provides cosmetic surgery that supports looking young. The notion of delaying aging as long as possible is ingrained in the dominant culture, with advertisers touting products and services that help keep people looking and feeling young, despite the fact that aging itself cannot be stopped.

In mainstream American culture, perceptions of dementia and aging are closely linked to Western biomedical culture. In this view, there is a strong emphasis on the “body-as-machine”, with value placed on diagnosis and treatment based on scientific data. Through the lens of objectivity and scientific principles, medical doctors explain disease through biological processes. In general, European American caregivers have thoroughly integrated this biomedical paradigm into their cultural framework.

Role of Caregivers

Caregiving in mainstream culture may be in the form of hired, paid caregivers, or may be family or friends providing unpaid caregiving. The Alzheimer’s Association reports that caregivers provide assistance to family members/friends with dementia to help them continue to live at home and do so out of a sense of obligation. Several studies report high levels of caregiver burden, stress, and strain in Caucasian caregivers in the United States, along with high levels of depression. Research supports the notion that mainstream culture is more likely to view caregiving as a disruption of the life course, associated with stress and burden (Gallagher-Thompson et al., 2003; King et al., 2002). Attending support groups and receiving help from professionals are notable coping strategies found in mainstream American culture.

Long-term care (facility vs. family residence)

Institutionalizing elders is sometimes perceived as "the American way" by non-mainstream cultures (Mahoney et al., 2005). As mainstream American adults and children continue to value the freedom and independence in their lives, they may feel less obligated to take care of older generations. Connell and Gibson (1997) report that there are higher levels of institutionalization for Caucasian individuals with dementia. This report is consistent with a more recent 2001 American Association of Retired Persons survey indicating that Caucasians are less likely to care for older relatives in the home. Overall, individuals with Alzheimer’s disease comprise a larger percentage of the population receiving home care, adult day services, and nursing home care.

African-American Culture

Perceptions of dementia and aging

Differences exist within any culture, and even though evidence may suggest general patterns within the African-American culture, not all people within this group will have the same views, opinions, or belief systems. Some individuals who identify with African-American culture may view aging and dementia differently than the mainstream culture. Mahoney and colleagues (2005) state that some African-American caregivers, families, and patients may not be aware of the early signs of dementia and may attribute memory changes to the normal aging process or view dementia as “old timer’s disease”. Dilworth-Anderson and Gibson (2002) report that symptoms of dementia can be associated with a lifetime of worry and stress which is associated with a concept of “worration”. Among the African-American culture, the process of aging can be viewed as surviving many years of adversity and may be seen as a “triumph over adversity” (Gallagher‐Thompson et al., 2003), which can make a diagnosis of dementia not to be perceived as such a devastating disease to some individuals. Racism has been reported as a possible deterrent to caregivers and elders seeking help from physicians about concerns for dementia. Some physicians treating African Americans do not recognize symptoms as being different from normal aging. Therefore, some patients from African-American backgrounds may have to overcome challenges to get an appropriate diagnosis and treatment.

Role of Caregivers

The type of support available to people with dementia in the African-American community will vary depending on the individual, and it is important to take these differences into consideration. Researchers Hargrave (2006) and Coogle (2004) have identified the role of the family in African-American culture to be of great importance. Family may be viewed as the primary support system in this culture. In some African-American families, the extended family may consist of adult children, extended relatives, and friends who can be involved in caregiving for an individual with dementia. In addition, the church can also be an essential source of support to individuals in this community.

In a research review, Janevic & Connell (2001) did not find any clear-cut patterns in how African-American caregivers deal with stress. However, several studies suggest that African Americans report lower levels of burden and can find caregiving to be less stressful overall when compared to Caucasians. Perceptions of dementia may not harm caregivers because caring for the elderly is considered a standard expectation in the African-American culture. “In general, the literature suggests that African Americans may show considerable resilience and adaptability when required to assume the role of caregiver” (Gallagher‐Thompson et al., p.427). In addition, coping strategies generally include relying on prayer, faith, religion, extended family, friends, and clergy members. This support system appears to decrease the effects of burden. Overall, research suggests that African Americans handle the stress associated with caregiving differently than non-minority groups. While research has given some insight into the African-American culture, it is crucial to avoid making over-generalizations when working with caregivers and families.

Long-term care (facility vs. family residence)

In the later stages of dementia, increased need for supervision will require individuals to be placed in a long-term facility, or caregivers will need to provide support at home. Research indicates that some African Americans may not seek help outside of the home due to common distrust in care providers and cultural perceptions. Due to the reliance on family members to care for African-American patients with dementia, formal health care may not be considered a priority. A study by Cox (1996) found that African Americans utilized more care in the home when compared to Caucasians. Some African-American caregivers also report not challenging health care providers due to being accustomed to an authoritarian health care system. This could indicate that African Americans with dementia are not utilizing long-term care facilities when compared with other cultural groups.

Elders are generally respected and have strong support from extended family members in the African-American community. Older adults pass on their values, beliefs, and wisdom to their children, and success may be perceived based on individuals and families enduring oppression and discrimination. When planning assessment and intervention for patients and caregivers with dementia in the African-American community, healthcare providers should consider the impact of socioeconomic status, education level, and personal experiences to evaluate unique individual and caregiver needs.

Hispanic and Latino Cultures

Perceptions of dementia and aging

There is great variability in values and beliefs within Hispanic and Latino cultures, with differing perceptions about dementia and normal aging. It is important to consider these differences and not make broad generalizations when working with caregivers and persons with dementia. Some Hispanic caregivers perceive dementia as a natural result of living a difficult life and refer to dementia as “tragic losses”, while other Hispanic caregivers have folk beliefs related to the cause and prognosis of dementia (Dilworth-Anderson & Gibson, 2002). Dementia-based behaviors such as wandering away or hallucinating may be perceived as embarrassing to the community and shameful to the family. Mahoney and colleagues (2005) report that the phrase “el loco” for craziness is often used since dementia is commonly considered a mental illness rather than a physical disease. While beliefs between groups of families may differ, studies have found that most people within the Hispanic culture also adhere strongly to medical interpretations (Castro, et al., 1984). A combination of cultural beliefs and values with westernized medical interpretations concerning dementia indicates a complex belief system. Healthcare professionals should be aware and supportive of cultural beliefs to facilitate successful implementation of treatment goals (Gallagher-Thompson et al., 2003).

Role of Caregivers

The role of caregivers also varies between cultures. Mahoney and colleagues (2005) analyzed questionnaires and ethnographic interviews and reported several barriers to seeking professional services for some Hispanic and Latino caregivers. Many caregivers and family members refrained from upsetting the person with dementia until safety concerns, such as wandering, arose. At this point, these caregivers turned to their close friends and family for support. Gallagher-Thompson and colleagues (2003) report that another reason caregivers have been reluctant to seek out services being the social stigma of dementia among some Hispanic and Latino families. However, once caregivers realized dementia might be a disease rather than a mental illness, they readily pursued professional assistance within their community of Spanish-speaking health care providers. Even with healthcare professionals, problems diagnosing dementia have remained, and the social stigma of “craziness” in people with dementia persists in many Hispanic and Latino communities. Barriers such as limited access to available resources (e.g., daycare programs and support groups) and minimal availability of trained bilingual and bicultural health care providers may hinder Hispanic and Latino caregivers from seeking treatment outside the community.

Kosloski and colleagues (1999) found that in several Hispanic and Latino families, the functional status of a person with dementia is important in predicting the use of community health services. If a person had advanced dementia, community health services were less likely to be utilized (Janevic & Connell, 2001). High levels of depression, burden, caregiver distress, and the cultural value of familism in Hispanic and Latino families make it exceptionally difficult to seek help outside the family and community (Knight et al., 2002; Gallagher-Thompson et al.).

Long-term care (facility vs. family residence)

Persons with dementia will need long-term support at a facility or in a caregiver’s residence, and beliefs regarding care vary greatly. According to Mahoney and colleagues (2005), many Hispanic and Latino families have a strong cultural aversion to nursing homes or institutional care facilities. Supporting a person with dementia is considered a family obligation until death. Knight and colleagues (2002) report that the Spanish word "familismo" refers to the importance and value of the family unit over the individual, in which reliance for support is on immediate and extended family members. "Familismo" is highly valued, which means that the Hispanic and Latino communities are more likely to support family members with dementia than seek out formal support services, even when accessible. However, a frequent concern for many people in Hispanic and Latino cultures is acculturation. People have reported they, “fear that their children will forget their cultural traditions of caregiving and adopt what they believed to be the American way of institutionalizing elders…” (Mahoney et al., p. 790).

Long-term care also includes treatment and education which should be based on family and cultural values. Like all cultures, Hispanic and Latino communities have intragroup heterogeneity (differences between groups within a community and within-group differences). Therefore, it is important to select treatment targets and tailor education based on family characteristics, while considering culturally sensitive factors. One method of treatment that is highly agreed upon is an interactive and personal approach. Gallagher-Thompson and colleagues (2003) report that members of Hispanic communities were more successful with cognitive-behavioral therapy involving short-term goals that are solution-focused, use of directive language, and skill-enhancing forms of treatment. Many individuals from Hispanic communities reported this type of treatment to be meaningful due to the group-based learning approach, socialization with other participants, and an interactive and collaborated model in which participants felt involved in the treatment approach.

Chinese Culture

Perceptions of dementia and aging

Mahoney and colleagues (2005) cite the words "hu tu" in Chinese to mean “becoming forgetful in older age”. Western explanations of brain dysfunction are not typically used to explain Alzheimer’s disease and dementia (Hinton et al., 2004). Instead, different models are used to explain dementia as it progresses. Braun and Browne (1998) report that religious beliefs shape perceptions about dementia and may cause caregivers to seek help through faith healing and prayer to get rid of evil spirits seen as the cause for the illness. Sun and colleagues (2012) report some Chinese attribute personality changes to “fate”, “wrongdoing”, “a result of worrying too much”, or “craziness”. Char and colleagues (1980) report that food and herbs with female (yin) and male (yang) elements are given to bring these forces back into balance. Bad "feng sui", or detrimental negative energies in environments, have also been reported to cause personality changes (Mahoney et al.). Some Chinese American children, who move their parents to the US from China to help care for them in old age, report a decline in mental status after the move due to a new environment and attribute the decline to homesickness (Braun, et al., 1995).

In Chinese culture, some cognitive decline is expected as people age. However, as the disease progresses and symptoms worsen, dementia is viewed as a mental illness to which culturally related stigma is attached (Vickrey et al., 2007; Liu et al., 2008). Liu and colleagues report the term “tribal stigma” being used to describe the shameful and humiliating feelings that extend to the entire family. This stigma influences how, where, and when care is sought. Mahoney and colleagues (2005) reported that members of the Chinese community might purposely hide the problems associated with dementia to avoid community awareness, leading some to seek information and services at regional health centers outside of their community. Further, some Chinese Americans report delaying or avoiding obtaining professional help independently. Instead, this process is more frequently initiated by health professionals (Hinton et al., 2004).

Role of Caregivers

Research points to the cultural value of filial piety as influencing the role of caregivers in Chinese culture (Dilworth-Anderson & Gibson, 2002; Mahoney et al., 2005; Sun et al., 2012). Honor and devotion are important components of the family-centered cultural value of filial piety. According to this bidirectional value, parents provide love and respect to their children. In return, there is an expectation that family members should respect and take care of their elders physically, financially, and socially to maintain harmony in the family system. When filial obligations are not met, disharmony, a major source of pressure for family members, can result. This dynamic can compromise the family’s dignity and sense of honor, and create stigma and resentment resulting from shame over unfulfilled responsibilities.

Dilworth-Anderson and Gibson (2002) report that some Chinese American caregivers bring their parents to the United States to care for them and may view immigration and stressful environmental conditions as the subsequent cause of dementia. These feelings may lead to shame and guilt further exacerbated by the burden and stress that some Chinese American caregivers feel related to the value of filial piety (Sun et al., 2012). Chinese American caregivers face additional stress because of the stigma and negative social responses attached to a diagnosis of dementia (Vickrey et al., 2007). Zhan (2004) reports that the stigma and negative social responses make it difficult to interact within the ethnic community and can negatively impact relationships and support found within that community.

While stigma affects personal relationships, it also creates barriers to seeking help within the healthcare system. Sun and colleagues (2012) state “Chinese American caregivers have higher levels of unmet needs, particularly in the areas of medical and mental health services” (p. 18). When Chinese American caregivers seek help, many go outside of their ethnic community to avoid shame within their community. Language barriers and lack of trust in medical professionals contribute to difficulty navigating the healthcare system. Mahoney and colleagues (2005) report that Chinese American caregivers want professionals to develop "guanxi", a personal and trusting relationship with them, but Western professional objectivity did not lend to establishing this type of relationship. Chinese American caregivers also cite a lack of information published in Chinese, insufficient culturally competent services, and lack of awareness of programs as barriers that lead to frustration and lack of trust in medical professionals.

Long-term care (facility vs. family residence)

Traditionally, there has been an expectation in many Chinese families that the first-born son and his wife should act as the primary caregivers for aging parents, regardless of the type of illness (Mahoney et al., 2005). Today, however, this expectation to display filial piety exists for all children in the family (Braun & Brown, 1998). "We usually handle problems ourselves, but if the problem is serious, we can ask a professional, preferably one that is bilingual and bicultural" (Braun, et al., 1995, p. 123).

Providing interventions that are more sensitive to Chinese cultural values may influence access to and use of formal services. An interpreter who can act as a cultural broker would be advantageous in providing education and information, and accounting for Chinese Americans’ unique perspectives on healthcare, family, cultural traditions, values, and expectations. Being mindful of cultural beliefs centered on family harmony and filial piety may further guide how we can provide services in a culturally sensitive manner.

Recommendations to Better Serve CLD Patients and Families

Examining and understanding our own cultural beliefs, biases, and limitations is important as these values and beliefs may influence clinical service delivery. ASHA recommends providing linguistically and culturally competent care and being respectful of and responsive to each person’s culture, values, preferences, and language. Quality of care should remain consistent for each person, regardless of ethnicity, socioeconomic status, age, etc. Remaining open and flexible during assessment and treatment can contribute to honoring each individual and family’s own culture and characteristics. Below are some important points for SLPs to consider in the evaluation and treatment of dementia within culturally and linguistically diverse populations:

• Include caregivers and family members in treatment planning.

• Ask questions to understand caregiver and family beliefs better.

• Recognize that an individual’s support network may include family members, friends, community members, etc., and ask questions to understand this network better.

• Be receptive to different belief systems and alternatives to Western medicine.

• Work to understand the unique needs of the individual and the family, along with the culturally-based factors affecting views of aging, dementia, and caregiving.

• Do not assume that a treatment that works for one person in a particular cultural group will work for others in that cultural group.

• Take into consideration the time and energy required for caregivers to implement indirect treatments.

Resources

The following online resources provide information and guidelines for providing culturally and linguistically competent services:

• Several codes in ASHA’s Code of Ethics apply directly to providing these services. The following website provides guidance for these rules.

ASHA

• The National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care (the National CLAS Standards), outlined in the website below, are designed to enhance quality, promote equity and eliminate disparity in healthcare. These standards provide a model that individuals and organizations can utilize to implement and deliver culturally and linguistically appropriate services. There are 15 standards total, the principal of which is to provide effective, equitable, understandable, and respectful quality care and services. The remaining 14 standards pertain to governance, leadership, workforce, communication and language assistance, engagement, continuous improvement, and accountability.

US Department of Health and Human Services, Office of Minority Health

Questions for Patients and Their Families to Determine Cultural Beliefs

Variations exist across cultures and within cultures. It is important to treat each person as an individual and not assume that an individual represents or believes in the cultural norms of that particular culture. The following questions may be utilized to better understand the patient’s individual beliefs about their illness and understand what is important to them in the treatment or healing process. These questions were developed by Arthur Kleinmann in 1978 and were presented by Anne Fadiman in The Spirit Catches You and You Fall Down.

The Eight Questions:

1. What do you think caused the problem?

2. Why do you think it happened when it did?

3. What do you think your sickness does to you? How does it work?

4. How severe is your sickness? Will it have a short course?

5. What kind of treatment do you think you should receive?

6. What are the most important results you hope to receive from this treatment?

7. What are the chief problems your sickness has caused for you?

8. What do you fear most about your sickness?