Percepções de familiares cuidadores sobre o planejamento antecipado de cuidado de pessoas idosas com demência

Abstract

Advance Care Planning (ACP) has emerged as an approach to preserve autonomy and respect the end-of-life wishes of individuals, focusing on desired care goals. In the advanced stages of dementia, where autonomy is compromised, family caregivers assume the responsibility of making decisions while striving to maintain the individuality of the older adults. ACP enables conflict prevention and enhances communication among patients, family caregivers, and healthcare professionals. Despite not being widespread in Brazil, ACP can empower individuals with dementia to express their end-of-life wishes, bringing tranquility and comfort to family caregivers by ensuring the fulfillment of their loved ones' choices. In light of this context, the aim of this thesis was to explore the perceptions and experiences of family caregivers of older adults with dementia regarding ACP. A qualitative research design was employed, using semi-structured interviews with a convenience sample of 63 family caregivers. Reflexive thematic analysis Reflexive thematic analysis was used for data analysis, resulting in three studies. The first study aimed to analyze the perceptions of family caregivers of older adults with dementia about the end of life. Two themes resulted from the data analysis: "Different perspectives on the end of life: from death itself to a sad, painful and long grief process"; and "End of life in the perspective of transcendence". The second study sought to explore the perspectives of family members of older adults with dementia about ACP. One global theme emerged: Intuitive family plans without advanced care planning. Three sub-themes included: “Past perspectives guide present care: respecting wishes where possible”; “Unknown wishes: imaging the care they would want”; and “End-of-life care: reluctance to plan versus being prepared”. Finally, the third study aimed to understand and discuss the perceptions of family caregivers of older adults with dementia about the meaning of daily care. A global theme emerged: "Ambivalence of feelings," along with two sub-themes: "'It means everything': care as fulfillment, expression of love, and reciprocity" and "'All the burden falls on me': care as a sense of duty, obligation, and burden". In conclusion, this thesis revealed diverse views among the research participants regarding the end of life. While older adults may not engage in ACP, families implement care according to the preferences previously expressed by the older adults or based on what they believe to be their loved one's wishes. Additionally, daily care is tailored to the individual's reality and the pre-existing relationship established before the onset of illness.