Family caregivers experience of end-of-life carefor persons with dementia : A descriptive literature review

Abstract: Background: Dementia is a disease that causes significant cognitive decline and canaffect occupational, life and social functioning. As the disease worsens and symptoms ofpersons with dementia(PwD) become more severe, some end-of-life stage PwD chooseto spend their time at home, which means that the family caregivers become the mainsupport body for the PwD. Long hours of care can have an impact on various aspects ofthe family caregivers, and these are effects that we want to explore.Aim: To describe the experience of family caregivers in the end-of-life care of PwD.Design: Descriptive review of qualitative studies.Methods: Literature retrieval was carried out by using keywords in PubMed andCINAHL databases, and the results were analyzed and discussed.Results: A total of ten articles were included in the review. There are three themes in thisstudy: Feelings during caring; Challenges during caring; Benefits during caring. Familycaregivers can make a difference in their lives by having positive or negative effects onthemselves while caring for patients with terminal dementia.Conclusions: Family caregivers have different experiences caring for PwD at the end-oflife stage. Some family caregivers are guilty of a lack of knowledge. Some are frustratedand lost at the fact that PwD are dying. However, there are some family caregivers whogain social and family support and facilitate relationships with PwD. Nurses not only needto provide professional medical care knowledge for family caregivers in various ways,but also need to pay attention to their psychological and physical conditions and providecorresponding support.Keywords: Alzheimer Disease, Dementia, End-of-life care, Experience, Familycaregivers, Informal caregivers, Lewy Body Disease.