In search of a good death: what does a good death in dementia look like? A qualitative study comparing views of people with dementia in Brazil & UK

• Grant number: 19/18583-9
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• Start date: August 01, 2020
• End date: July 31, 2022
• Field of knowledge: Health Sciences - Medicine - Medical Clinics
• Principal Investigator: Edison Iglesias de Oliveira Vidal
• Grantee: Julia Maria Vanelli
• Host Institution: Faculdade de Medicina (FMB). Universidade Estadual Paulista (UNESP). Campus de Botucatu. Botucatu , SP, Brazil

Abstract

The aging of the world population has been accompanied by a significant increase in the prevalence of dementias in the world. Decision-making and the behaviors adopted in the care provided to elderly people with dementia and their families represent an important focus of palliative care and bioethical reflections. Previous studies have sought to identify the point of view of patients with a variety of life-threatening conditions, such as cancer, about what would represent a good death. The results of such studies have contributed to the formulation of patient-centered health policies. However, there has not yet been research on what constitutes a good death from the point of view of people with dementia. This is due to the fact that most patients with dementia are considered to be unable to participate in research based on their opinions due to cognitive impairment related to these diseases. However, it has already been demonstrated that patients with dementia in early stages of the disease may be able to participate in qualitative surveys involving interviews, including related to sensitive issues and requiring judgment and expression of values. This project aims to identify what constitutes a good death according to the perspective of people diagnosed with dementia in Brazil and the United Kingdom. For this, semi-structured qualitative interviews will be conducted with demented patients in both countries. Qualitative methods of thematic content analysis will be used to extract themes from pooled field notes and one-to-one interviews. Emergent themes will be explored with attention to content and context of comments noted. These data will be used to describe and define what constitutes a good death and dying from the perspective of a person diagnosed with dementia.