Rachael Kelley1,2, Mary Godfrey2, John Young2. 1. Centre for Dementia Research, School of Health and Community Studies, Leeds Beckett University, Leeds, West Yorkshire, UK. 2. Leeds Institute of Health Sciences, School of Medicine, University of Leeds, Leeds, West Yorkshire, UK.
Abstract
BACKGROUND AND OBJECTIVES: Important decisions about the future care of people living with dementia are routinely made in hospitals. Very little is known about how the care needs of hospitalized people with dementia are understood, or how the perspectives of the person, families, and staff intersect to inform decision-making. This study explores how the care needs of people with dementia are understood by the person, their family, and hospital staff (the care triad), and how these perspectives shape decision-making. RESEARCH DESIGN AND METHODS: Ethnographic data were collected from 2 care-of-older-people general hospital wards via observations, conversations, and interviews with people with dementia, families, and staff. In total, 400 hr of observation and 46 interviews were conducted across two 7- to 9-month periods. RESULTS: The person's care needs were often understood differently between and within arms of the care triad. A lack of consistent engagement with families and people with dementia reduced opportunities to recognize and integrate this range of views, leading to delays or difficulties in decision-making. People with dementia, particularly those lacking capacity, were most likely to have their perspectives overlooked. DISCUSSION AND IMPLICATIONS: Early engagement with people with dementia and their families is required to ensure that all perspectives on the person's current and future care needs are understood and represented during decision-making. Particular attention should be paid to involving people living with dementia in discussions and decisions about their care, and to the assessment and involvement of people who may lack capacity.
BACKGROUND AND OBJECTIVES: Important decisions about the future care of people living with dementia are routinely made in hospitals. Very little is known about how the care needs of hospitalized people with dementia are understood, or how the perspectives of the person, families, and staff intersect to inform decision-making. This study explores how the care needs of people with dementia are understood by the person, their family, and hospital staff (the care triad), and how these perspectives shape decision-making. RESEARCH DESIGN AND METHODS: Ethnographic data were collected from 2 care-of-older-people general hospital wards via observations, conversations, and interviews with people with dementia, families, and staff. In total, 400 hr of observation and 46 interviews were conducted across two 7- to 9-month periods. RESULTS: The person's care needs were often understood differently between and within arms of the care triad. A lack of consistent engagement with families and people with dementia reduced opportunities to recognize and integrate this range of views, leading to delays or difficulties in decision-making. People with dementia, particularly those lacking capacity, were most likely to have their perspectives overlooked. DISCUSSION AND IMPLICATIONS: Early engagement with people with dementia and their families is required to ensure that all perspectives on the person's current and future care needs are understood and represented during decision-making. Particular attention should be paid to involving people living with dementia in discussions and decisions about their care, and to the assessment and involvement of people who may lack capacity.
Authors: Manuel José Lopes; Lara Guedes de Pinho; César Fonseca; Margarida Goes; Henrique Oliveira; José Garcia-Alonso; Anabela Afonso Journal: Int J Environ Res Public Health Date: 2021-06-30 Impact factor: 3.390