Attitudes toward Alzheimer's disease and dementia caregiving and health outcomes: Racial and ethnic differences

Persons living with Alzheimer's Disease (AD) spend most of the course of their illness in the community and receive most of their care from informal caregivers – usually family caregivers.1 About two thirds of the family caregivers of persons living with AD are women, 2,3 and most of them are in their midlife.4,5 Currently, about 11 million adults, mainly midlife women, annually provide about 16 billion hours of family care for people with AD and other dementias.6 The negative influences of caregiving on health outcomes of family caregivers are well documented.7, 8, 9 The chronic stress of their role places them at greater risk for morbidity and mortality of chronic diseases/conditions than non-caregiving peers.9, 10, 11, 12, 13 The adverse effects of caregiving on their psychological and physical well-being are extensive.7, 8, 9

Ongoing research reports that there exist cultural differences in attitudes related to dementia in racial/ethnic minority populations, which subsequently affect timely diagnosis, suboptimal care management, and proper family caregiving for persons living with AD among racial/ethnic minority populations.14, 15, 16 For instance, although Asian Americans include highly diverse sub-groups, all Asian Americans across the sub-groups share many common characteristics, one of which is “filial piety,” the belief prescribing that family members are in charge of caregiving roles for older adults.14, 15, 16 In addition, African American families closely work with their communities during dementia caregiving because their definition of family is much wider than that of other race/ethnic groups.17 Previous research suggests that African American family caregivers of persons living with dementia differently experience and perceive stress and burden compared with Whites.17,18 Thus it is recommended to consider these unique cultural differences in the attitudes in order to meet the specific needs of family caregivers from racial/ethnic minorities. However, virtually no national scope studies (that could make it possible to get an adequate number of racial/ethnic minority midlife women) comparing attitudes toward AD of multi-racial/ethnic groups of MWPLAD have been conducted. In an integrated literature review on 21 studies on dementia caregiving experience among two or more racial/ethnic, national, or cultural groups, Janevic and Connell35 reported that there were mixed findings on differences in attitudes, coping, and social support among different racial/ethnic groups and suggested that racial/ethnic minority groups might not have adequate support.

Due to cultural attitudes related to AD and family caregiving (e.g., stigma attached to dementia, filial piety, family values, respect for elderly, and fatalism), racial/ethnic minority MWPLAD tend not to share their experience, including their own symptoms, until they get severe/serious symptoms that cannot be tolerated anymore.16,19, 20, 21 Due to these cultural attitudes, these women suffer through the symptoms, although many could be easily managed with existing strategies, and/or the women ignore the symptoms that might need immediate medical attention.16,19, 20, 21 Subsequently, they have lower quality of life and fewer sources of information and support than White family caregivers.16,19, 20, 21

Despite these findings reported in the literature, little is still known about the impact of caregivers’ attitudes toward AD on caregivers’ health outcomes. Previous research supports the negative impact of caregiving burden, stress and coping, or resilience on caregivers’ health outcomes.22, 23, 24 In two studies,25,26 caregivers’ attitudes toward dementia and relevant care were significantly associated with caregiver strain, relationship closeness in the family, and satisfaction with social support in the community. In social psychology, attitudes have been regarded as a strong factor influencing behavioral changes that could improve health outcomes.27, 28, 29, 30, 31, 32, 33, 34 However, very few studies have been conducted among racial/ethnic minority MWPLAD about the associations of caregivers’ attitudes toward dementia to their health outcomes. 22, 23, 24

The purpose of this study was to explore racial/ethnic differences in the attitudes toward AD and dementia caregiving and health outcomes among MWPLAD in the U.S. and examine the associations between the attitudes and health outcomes. The specific aims of the study were to:

Aim 1. Explore racial/ethnic differences in attitudes toward AD and dementia caregiving among MWPLAD.

Hypothesis 1: There are significant racial/ethnic differences in attitudes toward AD and dementia caregiving among MWPLAD.

Aim 2. Explore racial/ethnic differences in the women's health outcomes.

Hypothesis 2: There are significant racial/ethnic differences in health outcomes of MWPLAD (life event stress, quality of life, and symptoms [total numbers and total severity scores]).

Aim 3. Determine the associations of the women's attitudes toward AD and dementia caregiving to their health outcomes while controlling selected covariates.

Hypothesis 3: There are significant associations between the attitudes toward AD and dementia caregiving of MWPLAD and their health outcomes after controlling for selected covariates including race/ethnicity.

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