How Do Caregivers of Persons with Dementia Cope with the Ambiguity of Their Grief Experience Throughout the Caregiver Journey

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Honig, Allyson
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Dementia is a condition that foreseeably alters the life course of diagnosed persons as the illness impedes their ability to manage independently and live on their own with the progression of the disease. In response, family members take on a caregiving role but can have profound feelings of loss and grief. Of concern, the failure to recognise grief and accept and adapt increases the risk for negative outcomes such as complicated grief responses in bereavement. Currently, there is a paucity of research in the area of caregiver loss and grief. The purpose of this review was to explore how caregivers of persons with dementia (PWDs) cope with feelings of loss and grief from diagnosis to bereavement. The author analysed various grey literature and nine qualitative peer-reviewed studies. The results indicate a common theme of disconnection among carers; to cope, they use various approaches that range from avoidance strategies to preparedness. The findings show that the complex interplay of contextual factors (sociodemographic variables, the nature and rate of dementia, and the quality and nature of supports) influences caregivers' experience. With the overarching goal of improving the quality of life of family caregivers of PWDs, the author recommends the inclusion of and connection to holistic, culturally responsive, client-centred care practices and programs throughout caregiving.
Alzheimer's disease , dementia , Alzheimer's disease or related dementia , caregivers , family caregivers , informal caregivers , carers , journey , experience , bereaved , bereavement , loss and grief , predeath grief , dementia grief , caregiver grief , coping , adaptation
Attribution-NonCommercial-NoDerivs 3.0 United States , openAccess