Understanding dementia in the sociocultural context: A review

Introduction

As culture affects how one perceives and defines the meaning of illness, findings show the importance of cultural heritage knowledge to assess the unique health needs of the individual. To speak about dementia from the anthropological point of view is to speak about the social, cultural and symbolic dimensions of the disease and to consider how social and cultural factors affect the various manifestations and perceptions of it (Poveda, 2003). The majority of studies on dementia have been made in Western societies, and we know little about how dementias are experienced or understood elsewhere. Illness constructs reflect core cultural values in that they express normative understanding about the nature and causes of anomaly and dysfunction. It is important to consider dementia not only as a series of signs and symptoms but also as a category of differentiation, discrimination and ascription of cultural values that shapes the experience and interpretation of functional decline in old age. Elderly with cognitive problems are stigmatized in many cultures: denial, shame and sensitivity are important aspects related to dementia, which place it within a taboo atmosphere, but dementia is not universally considered a devastating disease; in some countries, everyone notices that the person is changed, but the change is viewed as a part of senility.

Anthropological and cultural perspectives

In contrast to the individualistic view of the self, non-Western cultures can be broadly described as relational or sociocentric, where the self is defined in relation to other selves and the society it exists within. Japan is a culture of social relativism, where one tends to act within the context of social relationships, rather than autonomously (Hashmi, 2009). Japanese see the person as a mind/body complex that involves inner and outer expressions of the person and places those expressions into social contexts (Kasulis, 1994). In Japan, the moral status of the older person is defined in terms of his or her ability to maintain social connections within a circle of family, friends and acquaintances (Traphagan, 1998). By the end of 1990s, Japanese thought that dementia could be prevented. The types of preventatives are called ‘boke bôshi’, which literarily translates as ‘dementia prevention’. The verb form of boke is ‘bokeru’, a common word that can be translated as ‘to become disoriented’: it refers to a deviated state of consciousness with a wide range of usages, from minor age-related memory loss to severe insanity. Boke is conceptualized as a condition over which people may have some degree of control, by engaging in activities that involve physical and mental exertion within the framework of social gatherings that encourage interaction with the others; it is widely believed that one may be able to delay or even prevent the onset of the condition (Traphagan, 2002): boke is seen as arising from inactivity and insufficient involvement in social settings. Perception that one has failed to make sufficient efforts, through activities such as hobbies and learning, to delay or prevent the onset of boke suggests at least some degree of moral lacking on the part of the person who develops the condition (Traphagan, 2000). The individual who becomes boke is unable to reciprocate those favors he or she receives, an undue burden on others, particularly one’s family members (Traphagan, 2000). The boke person is physically alive, but socially dead (Henderson & Traphagan, 2005).

Chinese communities in East Asia are undergoing great economic change. The culture and social structure of China have changed considerably with the Republican Revolution: the post-1949 government has denounced many popular traditional beliefs as superstitious or feudal, but it would be a mistake to assume that nothing of more than 2000 years of tradition remained. The process of modernization and globalization has shaken the age-old traditional Chinese existential value that has always been deeply rooted in family. ‘Family’ validates an individual’s core existential values. Traditional Chinese families tend to be collectivistic and enmeshed. Ikels (1998) studied the experience of dementia in Guangzhou, the historical Canton: neither the elderly nor the family seemed to have the fear of this condition that is so prevalent in the West. Most people in Guangzhou seemed to view dementia as more or less normal part of aging, that is, if a person is around long enough, sooner or later he or she will probably become confused, have memory loss and require close supervision (Ikels, 2002); so, many families may not seek services because they do not perceive dementia as an illness, or they may seek help much later in the disease process. Longevity was highly valued and living to a ripe old age was still considered by some a reward for having lived a moral life. This belief reflects the Chinese cosmological view that an individual’s life and well-being are closely intertwined with features of social, natural and supernatural worlds. Dementia may be interpreted as a retribution for the sins of one’s ancestors or family misdeeds, the result of the afflicted person being possessed by supernatural or evil spirit or an imbalance between opposing form of energy (yin and yang) (Elliott, Di Minno, Lam, & Tu, 1996). If family seeks help of traditional Chinese healers, herbalists and acupuncturists will cure the symptoms; if a family believes that dementia is caused by fate, they may accept the hand that they have been dealt because they do not believe it is possible to change fate (Elliott et al., 1996). Chinese population has been heavily influenced by Confucianism, a philosophy that emphasizes filial obligations to provide for and look after elderly parents. The concept of filial piety, considered central to understanding the nature of family relationships and care for the elderly Chinese society, has been the subject of much philosophical discussion of Confucius. In the Confucian scheme of things, one does not become an adult by becoming ‘independent’; rather, in a Chinese society, the marker of adulthood is becoming ‘responsible’ for others (Ikels, 1989). According to Confucianism, society is hierarchically organized: the first party (father, husband, elder brother) is assumed to be superior to the second party (son, wife, younger brother). The responsibilities of the first parties are to set a moral example to the second parties whose duties are to respect and obey the first parties even when they fall short: the absence of correct performance does not absolve the other party from carrying out the duties associated with his or her own role (Ikels, 2002). The presence of cognitive deterioration does not exempt the members of the family from their duties of care. In addition, according to the tradition and ethical values in China, the most important social unit is not represented by the individual, but by family: these approaches to life mean that many elderly do not feel stigmatized by being dependent on the others. When a demented person needs assistance, if the eldest son is not able to provide it, it will be up to other family members to assume responsibility. Disharmony results from family members failing to meet their filial obligations. In the process of modernization, new generations separate from their predecessors. Chinese persons in the urban areas of the People’s Republic of China are rather less likely to subscribe openly to the interpretations listed above: this reluctance stems directly from the Communist regime that attempted to dismiss the influence of traditional values (Ikels, 1998). For some maladjusted trans-generational families that fail to re-link effectively across generations, the remnant family members from the older generation become very dysfunctional without alternative social support system (Chan, Leung, & Chiu, 2007). Perceptions of dementia as ‘normal aging’ and as ‘a stigmatized mental illness’ are prevalent attributions among Chinese American caregivers, particularly in the early stages of the disease (Guo, Levy, Hinton, Weitzman, & Levkoff, 2000). The conceptualization of dementia as a normal part of aging tends to be linked with lower levels of caregiver distress, presumably because it normalizes the expectations for caregivers. In contrast, stigma associated with dementia may exacerbate stress by generating disgrace and shame (Sun, Ong, & Burnette, 2012).

Religion is an integral part of the entire Indian culture and permeates every aspect of life, and Hinduism is the dominant faith. The Hindu believes that each being has an immortal soul, which will migrate to another body after death: the Hindu understands his present state – sickness and misery as well as health and prosperity – as a deserved consequence of the good or bad deeds in his previous life. The Varna or the caste system is another aspect of Hindu culture that shapes individuals’ values and beliefs. According to ancient scripture, Hindus were classified into four major castes – Brahmins were the intelligentsia and spiritual leaders of the community, Kshatriyas were kings and noblemen, Vyshyas were traders and businessmen and Shudras encompassed all other. Families are multi-generational entities in Indian society: beliefs and practices are intended to honor and uphold the family. Respect for elders is highly valued. It is estimated that over 3.7 million people are affected by dementia in this country where the disease is largely a hidden problem with no community awareness and little help seeking (Shaji, Arun Kishore, Lal, & Prince, 2002). The caregivers and their family members had a very limited understanding of the illness and its causation; they refer to dementia with the colloquial term ‘Chinnan’ which means ‘child like’, a state resembling second childhood (Shaji, Smitha, Lal, & Prince, 2003). The syndrome is considered to be a normal part of aging, not a medical condition and there is a marked tendency to attribute symptoms of dementia as deliberate misbehavior (Shaji et al., 2003). In India, there is a strong cultural emphasis upon the duty of a son and his wife to provide for his elderly parents, regardless of conflict or resentment that might arise as a result (Fry, 1980). The physical dependency of an old person is not seen in a negative light, although the aged person might be expected to renounce worldly ties and responsibilities by transferring economic and political power within the family to the younger generation while becoming the symbolic center of the extended family (Hashmi, 2009). A widely accepted notion of the family as endlessly capable and supportive caregivers may be one of the reasons why the government continues to accord low priority to the needs of older people (Shaji et al., 2003). An unexpected finding of a study (Dias et al., 2008) conducted in Goa, on the west coast of India, was the high mortality of patients, despite the exclusion from the study of subjects with severe dementia. The authors concluded that poor quality of care due to a low degree of awareness of the disorder, and poor management of complications such as nutritional deficiencies and vascular events, could be responsible for the large number of deaths during the study period.

American Indians (AIs) or Native Americans belong to the AI geographic race: they were the first people to live in the area that is now known as the United States. Families and whole clans joined together to form tribes. There are 4.4 million AIs with about 550,000 living on reservations or other trust lands. Currently, there are 561 recognized tribes – the Cherokee and the Navajo comprise the majority – speaking over 200 different languages and dialects. Each tribe is different from other tribes, but also members of the same tribe may differ depending on the varying degrees of assimilation of Anglo-American culture. Spiritual belief is a pervasive aspect of Indian culture, although belief systems vary widely between tribes/nations and geographic areas. Most Indian traditions teach that the ‘interconnectedness’ of all things leads to a relationship between man, Creator/God, fellow men and nature. In many Indian traditions, healing, spiritual belief or power and community were not separated, and often, the entire community was involved in a healing ceremony and in maintaining the power of Indian ‘medicine’. The term ‘elder’ in the Indian community denotes a position of leadership, based on experience, spirituality and community service, rather than on chronological age. Diverse cultural recognition and interpretation of declining cognitive ability probably pose the greatest barriers to diagnosing dementia in the AI population. Various tribes, it has been suggested, may differ greatly in their attitudes about dementia in older people, some considering it to be a part of normal aging and others seeing it as part of the dying process (Kramer, 1996). Research has shown that in some groups, the phenomena of hallucinations associated with dementia are considered not pathological, but part of an elder’s transition to the next world – a way in which the elder made contact with the afterlife: hallucinations are considered as actual communications with ‘the other side’ (a reference to the non-empirical environment inhabited by the spirit of the dead) (Henderson & Henderson, 2002). The involvement with the world of the dead did not induce fear but respect for the elderly. Henderson and Traphagan (2005) defined this construct as supernormal meaning that the behavioral aberrations are not considered pathological, but not ordinary either. The supernormal classification indicates that an extraordinary phenomenon is taking place; an elder with special condition has the capacity to access life after death, prior to death. Explanatory models for dementia vary from tribe to tribe; some of the reported examples include naturalization of cognitive impairment and dementing behavior (dementia as part of the Creator’s plan for a person’s ultimate learning) and an imbalance in the patient’s spiritual, emotional and social environment (Griffin-Pierce et al., 2008). Lack of access to appropriate health care for a large portion of the population might result in misdiagnosis or underdiagnosis by health care systems.

The Black population of America (African Americans) consists of more than 35 million individuals, descendants of those who were forced to leave Africa (especially the western and central regions) by Europeans and reduced to the status of slavery in North America. The US Census Bureau reported in 2008 that ‘black persons’ represented 12.8% of the population, and these percentages have grown significantly in recent years (US Census Bureau, 2014). This population has developed variegated models for conceptualizing dementia: some consider it an inevitable consequence of aging (Mahoney, Cloutterbuck, Neary, & Zhan, 2005), others a form of mental illness (with the resulting stigma) (Cox & Monk, 1996), some others a disorder explained according to certain canons of popular culture such as worriation or spells (Dilworth-Anderson, Williams, & Cooper, 1999). Worriation represents a combination of anxiety and preservative, ruminative thinking that can cause brain damage (Gaines, 1988–1989); spells are episodes of unusual consciousness that may range from periods of extreme anger or irritability, fugue states, trances or waking visions. Connell, Roberts, McLaughlin, and Akinleye (2009) found that religious and spiritual beliefs may differentially impact perceptions of dementia among African Americans as compared with Whites. A significantly high proportion of African Americans believe that ‘God’s will’ had a hand in determining who developed Alzheimer’s disease (AD) and who did not, and they may be more prone to believe that medicines will be ineffective in treating a disease that stems from a spiritual cause, whereas others may believe that aggressively seeking treatment to fight a disease like AD may be acting in opposition to a divine plan. Care is usually provided by extended family, including a network of friends who are considered family. The strengths and resilience of the African American family can be attributed in part to a strong kinship network. The value of extended families as the primary family unit in the African American culture is different from, not necessarily better or worse than, the Eurocentric concept of the nuclear family (Scannapieco & Jackson, 1996). Persons who are designated as fictive (or pseudo- and para-) kin are unrelated by either blood or marriage, but regard one another in kinship terms (Chatters, Taylor, & Jayakody, 1994). The African American family is overcoming incredible odds to maintain the stability of the family, confronting obstacles that far exceed the challenges of the past. When compared with their White counterparts, African American caregivers are less likely to perceive patient-related problems as burdensome or to view caregiving as a disruptive experience (Janevic & Connell, 2001). This may be due to several reasons: specifically, African Americans’ greater access to extended church and family support networks, experience adapting to adversity, greater reliance on positive coping strategies such as prayer and reframing of difficult life circumstances and the valuing of role performance to a greater extent than cognitive skills (Gallagher-Thompson et al., 2000). African Americans perceive dementia as a lesser subjective threat than do Whites, noting a lower level of concern about developing the disorder and less worry about its possible consequences (Roberts et al., 2003).

The term Hispanic/Latino includes the US population with ascendants in Cuba, Puerto Rico, Mexico and Central America. Although all share the same language, there are significant cultural differences among the subgroups. Some caregivers attribute the cause of dementia to have lived a hard life, others believe it is due to supernatural forces; in some groups, dementia may be attributed to el mal de ojo (the evil eye) (Talamantes, Trejo, Jimenez, & Gallagher-Thompson, 2006). A common cultural value is the salient role played by the family in the life of the individual, and the high reliance upon the family to provide both practical and emotional support to the elderly: within the Latino community, la familia supports a family obligation to care for its members. According to Losada et al. (2006), familism (the strong identification and attachment of individuals with their family) was significantly correlated with lesser burden in the Hispanic caregiver living in the United States related to the Spanish sample. A study of Hispanic caregivers suggests that cultural beliefs about family obligation and intergenerational reciprocity result in a strong shared norm that AD should be responded to with a strong commitment to family based home care (Neary & Mahoney, 2005). The provision of social support by caregivers decreases the probability of institutionalization of Latino elderly (Angel, Angel, Aranda, & Miles, 2004).

An Indigenous Australian is defined as a person who is descendant of an Indigenous inhabitant of Australia, identified as an Aboriginal or Torres Strait Islander and is recognized as such by members of the community in which he or she lives (Australian Law Reform Commission, 1986). Aboriginality is about descent, culture, upbringing and life experiences. The Australian Bureau of Statistics (ABS, 2004–2005) estimated that in 2006, there were 517,000 Aboriginal and Torres Strait Islander people living in Australia. Overall, Indigenous people make up 2.5% of the total Australian population. At the time of colonization, Indigenous Australians lived in small family groups and were semi-nomadic, with each family group living in a defined territory, systematically moving across a defined area following seasonal changes. Complex and sophisticated kinship systems placed each person in relationship to every other person in the groups and determined the behavior of an individual to each person. Torres Strait Islanders live permanently in 18 communities on 17 of the 100 islands, as well as in locations in every Australian state. The Indigenous population of Australia has ‘the poorest health of any identifiable population in Australia’ (Australian Health Ministers Advisory Council (AHMAC), 1994). Adult mortality is exceptionally high, particularly among the young middle-aged, and as it has been suggested, growing old enough to develop AD is a ‘luxury’. Older persons continue to play a determinant role as a guide and support of the community, participating in decision making, in cultural activities and ceremonial events (Warburton & Chambers, 2007): research has highlighted the important role played by Indigenous elders within their communities supporting younger people and maintaining and promoting their culture (Warburton & McLaughlin, 2007). There is insufficient information about how big the problem of dementia is in Indigenous people and what types of dementia affect different people in diverse communities across the country. Indigenous Australians report dementia as being a ‘withefella sickness’ as the word dementia has no meaning in Indigenous term (Fox, 1994). A condition such as dementia may be thought to be caused by metaphysical forces, from doing something wrong by law (such as going into the wrong country for that person) or from jealousy (Maddocks & Rayner, 2003). Relatively few Indigenous Australians with dementia access formal government support programs (Australian Institute of Health and Welfare (AIWH), 2011). There is a strong Aboriginal belief that a life ‘out of balance’ having lost the connection to the land and to traditional relationships causes sickness; some have described dementia as a ‘sick spirit’. Decline in old age which might be labeled mild or moderate dementia by ‘Western medicine’ may be seen as ‘tiredness’ or ‘childlike’ behavior (Zann, 1994).

Native Hawaiians are descendants of the Indigenous Polynesian people of the Hawaiian Islands who arrived in these islands 1500–2000 years ago. They call themselves Kanaka Maoli, which can be translated as ‘true’ or ‘real’ person, and they constitute 0.1% of the total US population. The 1959 Statehood Admissions Act of Hawai’i defines a Native Hawaiian person as ‘any individual who is a descendant of the aboriginal people who, prior to 1778, occupied and exercised sovereignty in the area that now constitutes the State of Hawaii’. As in many orally transmitted cultures, old people are respected and held in high esteem by the younger generation as holders of an ancient wisdom (Blaisdell & Mokuau, 1991). The family relationships are affected by traditional values such as mana (energy that permeates and binds all things), lokai (harmony and units), pono (righteousness), ’ohana (extended family and group support), kokua (mutual cooperation) and kuleana (role). Poor recognition of dementia can have significant consequences for patients and family members. Lack of recognition delays the search for reversible causes. Arabs are inhabitants of the Arab World who speak various dialects of the Arabic language and share the values and beliefs of the Arab culture, a common history and heritage. Almost all of the people in the region extending from the Atlantic coast of Northern Africa to the Arabian Gulf call themselves Arabs. The total population of the Arab world is approximately 280 million. In the Arab world, the majority of Arabs are Muslims. The Arab family can be described as patriarchal, pyramidically hierarchal with regard to age and sex, and extended. In the Arab world, the eldest members are a source of spiritual blessing, religious faith, wisdom and love. Qadar is the Arabic word for fate/predestination (fate refers to the supposed force, principle or power that predetermines events; predestination means ‘determined in advance’): qadar is what Allah has decreed. The Muslim understands that after one has done everything possible, if circumstances do not lead to a desired outcome, then that outcome was not ordained by God who knows best about all things (Kirkinci, 2000). Typically, Arabs look down on people who are mentally ill: Islam views mental illness as a condition that results from an unbalanced lifestyle (diet, sleeping patterns, spiritual activities and remembrance of God) or an unbalanced body (Rahman, 1987). A study among Arabic speakers in Australia found that shame and stigma appeared to hinder use of mental health services, due to the strong cultural prohibitions on exposing personal or family matters to outsiders (Youssef & Deane, 2006). The word most commonly used in Arabic for dementia is kharaf that has several interpretations but is commonly interpreted to mean ‘unraveled’, ‘lost in his/her mind’. In most cases, the term is understood with a negative connotation; there is some reluctance in the Arabic community to admit to the illness, and because of the stigma, the family is likely to limit visits in fear of mockery or criticism (Perceptions, 2014). A study conducted among the Arab citizens of Israel (Cohen, Werner, & Azaiza, 2009) provides new insights into a nonstudied area: the emotional reactions of lay Arab persons to a person with AD. Their reactions attested to more positive than negative feelings about a person with AD. Higher religiosity was found to increase prosocial feelings of compassion and desire to help, and to reduce aggressiveness toward people with AD. Lower education and higher perceived dangerousness of the person with AD to others were related to more negative emotions.

Conclusion

Dementia should be conceptualized as a multifactorial process. In contrast to many other cultures, where dementia is not seen as a particularly significant public health problem, modern Western societies seem intolerant: dementia may induce stigma triggered by changes in cognition, behavior and decline in functioning. The Western biomedical model emphasizes highly cognitive function and considers their impairment as a terrifying event, while dementia is not described with negative connotations in other social areas. Although it is difficult to measure the impact of culture on disease, it is likely that race-specific cultural factors influence the way in which dementia is recognized and subsequently treated in minority populations: theoretical models of health behaviors, such as the health belief and illness behavior models, emphasize that illness attributions may play an important role in shaping decisions to seek help or adhere to treatment recommendations. Unfortunately, there is a lack of increased understanding of dementia, resulting from medical/scientific advances, among members of various ethnic minority groups.