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Bearing witness to life narratives: Iranian immigrant experiences of taking care of a family member with dementia

Caring for a person with dementia is one of the most devastating and challenging experiences that caregivers have to face. Many studies indicate that the experience of caregiving reflects cultural care values and beliefs. Even though dementia caregiving is the most frequently studied type of care as reflected in the literature, few studies have focused on dementia caregivers from culturally and linguistically diverse backgrounds. The purpose of this study was to explore Iranian immigrant experiences of taking care of a family member with dementia. An interpretive phenomenological approach was employed to investigate the experiences of ten Iranian family caregivers, each caring for a family member with dementia and living in Sweden. Caregivers were recruited through purposeful sampling and took part in semi-structured interviews. All of the individuals who were contacted participated in the study. The participants included seven women and three men, ranging in age from 40 to 65 years, from different cities. They had all lived in Sweden for at least 20 years. Two caregivers were married to people with dementia, and eight were caring for parents with dementia. Data analysis was guided by Benner’s interpretive phenomenology and revealed three key themes, namely caring as an experience of fulfillment, admitting the diagnosis of dementia, and the shock of not being recognized by their family members with dementia. Positive aspects of caregiving should be recognized and supported in order to facilitate the maintaining of caregivers’ involvement. The positive experiences of caregiving could help to alleviate the problems that are experienced by the caregivers of people with dementia.

Author(s): Monir Mazaheri, Helena Sunvisson, Alireza Nasrabadi Nikbakht, Monir Sadat Maddah, Azita Emami

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