End-of-life perspectives according to family caregivers of older adults with dementia: A qualitative study

Abstract

Background Family caregivers are primarily responsible for the care of older adults with dementia, and the demands of this care increase as the end of life approaches. Experiencing the end of a family member’s life can be stressful, and caregivers consider important to know how to identify when their loved one is approaching the end of life in order to prepare for this moment. Thus, as the family is primarily responsible for the older adult with dementia, it is essential to know the meanings of the end of life attributed by family caregivers. Objective To analyze the perceptions of family caregivers of older adults with dementia about the end of life. Methods This is a qualitative, descriptive and exploratory study. The convenience sample consisted of family caregivers of older adults with dementia. The inclusion criteria were being a family member directly involved in the care of the older adult with dementia and being 18 years of age or older. Data were collected from individual semi-structured interviews. The number of participants was defined during the interviews using the saturation criterion. Data were analyzed using the thematic analysis technique. Results A total of 63 family caregivers participated, 74.6% of whom were women, predominantly wives and daughters. Two themes resulted from the data analysis: (i) Different perspectives on the end of life: from death itself to a sad, painful and long grief process; and (ii) End of life in the perspective of transcendence. The meaning of the end of life was perceived in different ways by family caregivers. Understanding how they perceive and experience the end-of-life process of the older adult with dementia helps to clarify the best ways for the health professionals to approach and intervene with these families.