The silent voices of those who care : cultural learning of older black women caregivers of Alzheimer's family members
Burke, Joan Maxine Detry
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The purpose of this study was to explore how Black women learn caregiving skills when working with a Black family member with Alzheimer’s. To achieve this purpose, the following research questions were addressed: 1) what were those life lessons learned or experienced by the Black women Alzheimer’s caregivers? 2) How did the Black women caregivers learn to provide care to their family members with Alzheimer’s disease? 3) What was the role of culture in learning how to care for an Alzheimer’s family member? The sample for this study consisted of eight caregivers who were Americans and four were from the Caribbean. Of the four women from the Caribbean, two were from Jamaica, one from Bermuda, and one from Montserrat. Six of the women caregivers were wives and six were daughters. All twelve caregivers’ ages ranged from 42 to 85 years old. The qualitative study used in-depth interviews with open-ended questions, field notes, and observations as primary data collection methods. The steps in qualitative research consisted of organizing and transcribing, coding, categorizing, and developing themes. There were seven conclusions drawn from the study: 1) the caregivers’ life lessons learned or experienced were: patience; compassion; stress management; and personal growth, which were, to trust their instincts, self-empowerment, and to challenge the system. 2) They learned formally to provide care to their family members through the resources and services of the Alzheimer’s Association, doctors and the 36 Hour Day book, and nursing-aides and Medicare. 3) The women learned informally from drawing on previous experiences, through observations, on their feet through trial and error, and repetition. 4) Culture played a major role in the women’s adamant decision that no one could provide the care and love to their loved-ones as they could. 5) The caregivers had strong feelings and beliefs that culture played an important role in how they provided care. 6) The women used religious beliefs and spirituality as sources of strength and connectivity to cope with stresses, relieve burden and depression, and to provide care. 7) They used foods and ‘concoctions’ for healing and curing illnesses.