Epidemiological studies predict that there will be a dramatic increase in the number of ethnic elderly persons in the United States in the coming years. Many of these individuals will suffer from such chronic illnesses as dementia, and will be cared for by family members. Over the past 20 years, there has been a growing body of literature describing the attitudes and experiences of ethnically and culturally diverse family caregivers of persons with dementia. This article reviews the current literature on African-American caregivers of persons with dementia in terms of the following:
(1) caregiver characteristics;
(2) explanatory models of dementia;
(3) attitudes towards caregiving;
(4) caregiver burden;
(5) positive aspects of caregiving;
(6) treatment recommendations; and
(7) high-priority areas for future research.
According to current research, the nature of the relationship between the dependent elder and his/her caregiver varies across ethnic group lines. White caregivers are more likely to be spouses, whereas African-American caregivers are more likely to be adult children, extended relatives, or friends.1-4 In general, African-American caregivers as compared to white caregivers, are more likely to be younger, unmarried, with less formal education, and fewer financial resources.1,5 Because of their lower income and higher poverty rates, the financial stress of caregiving may pose a greater emotional burden on African-American caregivers.6,7 African-American caregivers, as compared to white caregivers, are more likely to provide more hours of care, higher-intensity care, and are more likely to report more unmet needs in terms of support and access to services.1,8-12
Many African-American caregivers are also actively caring for other people in addition to the frail elderly, such as minor children, grandchildren, and other family members.11,13 Even though African-American caregivers are caring for severely debilitated elders and other family members, they are less likely than white caregivers to use formal care services like nursing homes.14,15 Numerous studies have reported that African-American family caregiving of dependent elderly persons is performed within a collectivistic structure composed of different people with varying levels of involvement in daily caregiving activities.16,17 Since kinship ties are a very powerful force in African- American families, many investigators thought that African-American caregivers receive significant support from their network of family members. However, more recent studies suggest that prior research may have overestimated the availability and extent of support that African-American caregivers receive from other family members.1,18,19 These studies suggest that adult children of dependent elderly persons may be adversely affected by the other commitments in their own lives, which may severely limit the amount of assistance they can offer frail African-American elderly. In the midst of an extended family network, one primary caregiver emerges who bears the burden of being the sole decision maker, and has few opportunities for shared responsibility and shared decision making.20
EXPLANATORY MODELS OF DEMENTIA
Explanatory models of disease are health belief systems that have been used to describe the unique illness behaviors, culturally-mediated perceptions, and help-seeking behaviors reported in African-American and other ethnic minority elders.21-23 Explanatory models may include cultural beliefs about disease etiology, symptoms, and preferred choices in treatment options, patterns of decision making, and assessment of treatment options.24 Medical anthropologists indicate that African Americans may employ a variety of explanatory models to conceptualize dementia, including viewing dementia as an expected consequence of normal aging,25,26 a form of mental illness,27 or a manifestation of culture-specific physical syndromes (eg, “worriation” or “spells”).28 These health beliefs allow elders and family members to normalize or minimize dementia symptoms, promote substantial denial, and delay help-seeking behaviors.27
Mahoney et al26 suggested that African Americans’ limited knowledge about dementia, rather than culturally-influenced beliefs, are more powerful deterrents for African-American elderly persons receiving cognitive assessment. Previous research has focused on the ethnic-specific or folk beliefs of African Americans concerning dementia. However, quantitative analysis of interviews of African-American caregivers suggest that they ascribe to a variety of explanatory models, including biomedical, folk, and mixed (folk and biomedical). According to Hinton et al,29 “...explanatory models are much more than health beliefs—they are embedded in family narratives that often illuminate the sociocultural context of dementia and caregiving. Through this lens, the clinician can build a deeper understanding of family values, the quality of caregiver social supports and the nature of noncaregiving stressors.”
ATTITUDES TOWARD FAMILY CAREGIVING
Among African Americans, caregiving of elderly persons is a highly culturally-valued and encouraged activity, and is considered to be an expected part of adult development.16 Some authors suggest that African Americans often consider caregiving an expression of traditional values, such as repaying the debt to parents for being cared for a child, as continuing a family tradition of mutual concern, or setting an example for one’s children.3 Stevens et al30 suggest that these powerful cultural expectations about family caregiving may overshadow the severity of functional impairment of African-American elders with dementia and obscure the negative consequences that befall the caregiver (eg, lost income, worsening health).
Previous researchers may have assumed that African-American caregivers conform to this cultural imperative in order to provide care “at all costs” rather than use formal care services. Numerous authors have noted that African-American caregivers are less likely to place their care recipients in nursing home settings as compared to white caregivers.31 Other investigators report that African-American compared to white caregivers are less distressed by disruptive behaviors, which may account for their ability to maintain severely functionally and cognitively impaired elderly persons at home for longer periods of time.5,32 The cultural expectations of African Americans to provide home-based care for elderly with dementia has been proposed as one of the factors resulting in delayed entry into nursing homes and the lower utilization of all formal care services.
CAREGIVER BURDEN AND PSYCHOLOGICAL DISTRESS
Caregiving for a frail elderly person often produces conflicts and challenges in the caregiver’s personal life, social interactions, and work life, which can contribute to the overall caregiver burden.33 Caregiver burden is defined as the negative psychological, economic, and physical effects of caring for a person who is impaired.9 Studies suggest that caregiver burden can lead to greater functional and cognitive impairment in the patient, and is a significant predictor of admission to a long-term care facility. Several investigators indicate that compared to white caregivers, African-American caregivers take care of elders with greater cognitive and physical impairment and provide more hours of care.10 Studies of ethnic differences in caregiver burden have revealed conflicting results. Some studies report that that caregiver burden and depression are more common in white caregivers,1,9,10 while other studies have not found this relationship.34 These conflicting results may be the result of differences in sampling strategies, decreased sensitivity of measures of burden among ethnic minorities, and limited self-disclosure among African-American caregivers to white interviewers. Current research indicates that the physical and emotional demands of caregiving can lead to lower self ratings of health, poor immune functioning, and greater engagement in unhealthy behaviors in the caregiver. Though African-American women are often portrayed as strong, resilient caregivers with large informal support networks,35 these women have a high prevalence of chronic medical disorders (eg, diabetes, heart disease, stroke).
Though some studies report no differences in African-American and white caregivers in terms of self-reported ratings of health, other investigators indicate that there is a greater prevalence of self-reported symptoms and poorer perceived health among African Americans.10 Haley et al36 reported that African-American caregivers engaged in more unhealthy behaviors (eg, over- or undereating, drinking alcohol, lack of exercise). Qualitative research analyzing the content of African-American caregiver interviews has found aspects of caregiver burden, including recurrent themes of burnout, loss, and alienation that were not captured in the survey instruments often used in social gerontology literature.20 Studies of ethnic differences in psychological distress in white as compared to African-American caregivers have revealed conflicting results. Many studies have reported less depression, stress, and burden among African-American caregivers.1,3,4,6 Haley et al36 concluded that African-American caregivers reported lower levels of psychological distress and endorsed more benign appraisals of the caregiving process. Other studies report that African-American compared to white caregivers are more likely to consider memory and behavioral problems of dementia patients less distressing, and more often reported the positive benefits of caregiving.4,37,38 In contrast, more recent research indicates that African-American female caregivers experience a wide range of symptoms of role strain and depression.4,35,37,39 Among African-American caregivers, higher education was associated with higher levels of role strain.35 Williams37 proposes that African-American caregivers with greater educational achievement and income, as compared with those with less education and income, may experience more financial and occupation setbacks as a result of caregiving. The more highly educated caregivers may be more vulnerable to role strain. These studies suggest that African-American women who often juggle numerous caregiver roles (marital, parental, employee) with limited resources (economic, social, personal) sustain significant emotional and financial costs while providing care to frail elderly persons.
POSITIVE ASPECTS OF CAREGIVING
Caregivers have reported a variety of positive aspects of caregiving, such as pride in fulfilling filial or spousal responsibilities, enchanced closeness with the care recipient, and satisfaction with one’s competence.40 Several studies have found that compared to white caregivers, African-American caregivers reported greater caregiving satisfaction and mastery, less subjective burden, and less intrusion in their lives because of caregiving.3,38,41 African-American caregivers have reported higher scores on positive aspects of caregiving, which has been associated with higher religiosity, lower prevalence of anxiety, and lower feelings of being bothered by the care recipient’s behavior.42 Knight et al41 found that in their studies of 41 African-American and 128 non–African-American caregivers, African-American caregivers reported lower levels of burden. However, African-American caregivers reported levels of depression and anxiety equal to non–African-American caregivers. The authors suggested that since African-American caregivers tended to use emotion-focused coping, this approach to caregiving may have increased emotional distress. Several reasons have been proposed to explain why African Americans may find caregiving more rewarding than whites. These reasons include that African Americans feel that caregiving is: (1) a normative experience5,43; (2) associated with spiritual purpose; and/or (3) associated with pride in fulfilling filial or spousal responsibilities, and enhanced closeness with the care recipient.4,38,44,45 African-American caregivers are more likely to report greater attendance at religious services and using prayer more often than white caregivers as a coping mechanism.36 Ethnically-mediated religious beliefs, cultural traditions, and social support of the African-American family reinforce the value of home-based caregiving and may contribute to greater caregiver satisfaction.41 More research is needed in this area because the influence of ethnic group variables on stress and coping processes are complex and multidirectional.42
Gallagher-Thompson et al46 outlined several approaches for clinicians to utilize to promote a more effective working relationship with African-American caregivers. These recommendations are:
• Establish open communication and a good working relationship with the key informant from the patient’s support network.
• Inform the caregivers about the etiology, treatment, and disease course of dementia.
• Provide the family with clear educational materials about dementia (including books, videos, Internet sites).
• Educate and promote the use of cognitive enhancers in African-American elderly persons with dementia.
• Educate African-American caregivers about long-term care treatment options (eg, day care, respite care, support groups).
• Encourage African-American caregivers to participate in support groups and psychotherapy to reduce caregiver burden and develop effective coping strategies.
Currently, there is limited research on the effects of dementia on ethnic elderly persons and their caregivers. Lampley-Dallas47 identified several critical questions for future research efforts in this area including:
• Do the effects of dementia on minority caregivers differ from the effects on white caregivers?
• What are minority caregivers’ expectations of and barriers to using services?
• Why are there barriers to support group affiliation for ethnic minority caregivers and dementia evaluation for ethnic elderly?
• Can educational programs be developed that would attract physicians and improve their diagnostic and communications skills?
More studies in the future are needed to examine the experiences and service needs of African-American and other ethnic elderly persons with dementia and their caregivers. Results of these studies can provide effective and culturally-appropriate interventions for the diagnosis and management of dementia in the African-American elderly population.
Dr. Hargrave reports that she has been on the speakers bureau for Bristol-Myers Squibb. For more information on dementia in ethnic elderly persons, please visit www.ethnicelderscare.net