Carers: The navigators of the maze of care for people with dementia-A qualitative study

Maggie JAMIESON, Laurie Grealish, Jo-Ann Brown, Brian Draper

Research output: Contribution to journalArticle

5 Citations (Scopus)

Abstract

Abstract Background: Dementia is a challenge in our society, with individuals accessing services across multiple settings. Carers are navigating and delivering care services in the home. This research sought to investigate the experiences of people with dementia and their carers when transitioning home from hospital. Methods: This study used a qualitative descriptive design, employing in-depth interviews with 30 carers recruited through networks known to one state branch of Alzheimer’s Australia. Emerging themes were validated in one focus group. Results: During the hospital stay carers experienced a paradox: being required to deliver care yet perceiving that they were being ignored in regard to decisions about care. The time in hospital was considered by some carers to be stressful, as they were concerned about the safety of the person with dementia. Many reported that discharge home was rarely planned and coordinated. Returning home carers found re-establishing and/or accessing new services challenging, with available services often inappropriate to need. Conclusion: The paradox of the care experience in the acute setting, whereby the carer was either invited, or sought, to deliver care, yet was excluded in staff decisions about that care, challenges the current communication and coordination of care. For people with dementia and their carers, there is a need for a coordinated seamless service that enables continued unbroken care and support from acute care to home. Carers also need support navigating the wide range of services available and importantly both carers and care providers may need to understand service boundaries. Recommendations: This study highlights the need to acknowledge the expertise of the carer, and their need for support. Enabling a smooth discharge from hospital and support to navigate care access in the community is paramount. These experiences provide insight into gaps in service provision and modifying existing services may lead to improved experiences
Original languageEnglish
Pages (from-to)1-12
Number of pages12
JournalDementia
Volume1
Issue number1
DOIs
Publication statusPublished - 2016

Fingerprint

dementia
experience
expertise
staff
communication
interview
community

Cite this

JAMIESON, Maggie ; Grealish, Laurie ; Brown, Jo-Ann ; Draper, Brian. / Carers: The navigators of the maze of care for people with dementia-A qualitative study. In: Dementia. 2016 ; Vol. 1, No. 1. pp. 1-12.
@article{1e861cb9d9974e299e06b558cb66e6cf,
title = "Carers: The navigators of the maze of care for people with dementia-A qualitative study",
abstract = "Abstract Background: Dementia is a challenge in our society, with individuals accessing services across multiple settings. Carers are navigating and delivering care services in the home. This research sought to investigate the experiences of people with dementia and their carers when transitioning home from hospital. Methods: This study used a qualitative descriptive design, employing in-depth interviews with 30 carers recruited through networks known to one state branch of Alzheimer’s Australia. Emerging themes were validated in one focus group. Results: During the hospital stay carers experienced a paradox: being required to deliver care yet perceiving that they were being ignored in regard to decisions about care. The time in hospital was considered by some carers to be stressful, as they were concerned about the safety of the person with dementia. Many reported that discharge home was rarely planned and coordinated. Returning home carers found re-establishing and/or accessing new services challenging, with available services often inappropriate to need. Conclusion: The paradox of the care experience in the acute setting, whereby the carer was either invited, or sought, to deliver care, yet was excluded in staff decisions about that care, challenges the current communication and coordination of care. For people with dementia and their carers, there is a need for a coordinated seamless service that enables continued unbroken care and support from acute care to home. Carers also need support navigating the wide range of services available and importantly both carers and care providers may need to understand service boundaries. Recommendations: This study highlights the need to acknowledge the expertise of the carer, and their need for support. Enabling a smooth discharge from hospital and support to navigate care access in the community is paramount. These experiences provide insight into gaps in service provision and modifying existing services may lead to improved experiences",
keywords = "dementia, carer, person centred care, community services",
author = "Maggie JAMIESON and Laurie Grealish and Jo-Ann Brown and Brian Draper",
year = "2016",
doi = "10.1177/1471301214554930",
language = "English",
volume = "1",
pages = "1--12",
journal = "Dementia",
issn = "1471-3012",
publisher = "SAGE Publications Ltd",
number = "1",

}

Carers: The navigators of the maze of care for people with dementia-A qualitative study. / JAMIESON, Maggie; Grealish, Laurie; Brown, Jo-Ann; Draper, Brian.

In: Dementia, Vol. 1, No. 1, 2016, p. 1-12.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Carers: The navigators of the maze of care for people with dementia-A qualitative study

AU - JAMIESON, Maggie

AU - Grealish, Laurie

AU - Brown, Jo-Ann

AU - Draper, Brian

PY - 2016

Y1 - 2016

N2 - Abstract Background: Dementia is a challenge in our society, with individuals accessing services across multiple settings. Carers are navigating and delivering care services in the home. This research sought to investigate the experiences of people with dementia and their carers when transitioning home from hospital. Methods: This study used a qualitative descriptive design, employing in-depth interviews with 30 carers recruited through networks known to one state branch of Alzheimer’s Australia. Emerging themes were validated in one focus group. Results: During the hospital stay carers experienced a paradox: being required to deliver care yet perceiving that they were being ignored in regard to decisions about care. The time in hospital was considered by some carers to be stressful, as they were concerned about the safety of the person with dementia. Many reported that discharge home was rarely planned and coordinated. Returning home carers found re-establishing and/or accessing new services challenging, with available services often inappropriate to need. Conclusion: The paradox of the care experience in the acute setting, whereby the carer was either invited, or sought, to deliver care, yet was excluded in staff decisions about that care, challenges the current communication and coordination of care. For people with dementia and their carers, there is a need for a coordinated seamless service that enables continued unbroken care and support from acute care to home. Carers also need support navigating the wide range of services available and importantly both carers and care providers may need to understand service boundaries. Recommendations: This study highlights the need to acknowledge the expertise of the carer, and their need for support. Enabling a smooth discharge from hospital and support to navigate care access in the community is paramount. These experiences provide insight into gaps in service provision and modifying existing services may lead to improved experiences

AB - Abstract Background: Dementia is a challenge in our society, with individuals accessing services across multiple settings. Carers are navigating and delivering care services in the home. This research sought to investigate the experiences of people with dementia and their carers when transitioning home from hospital. Methods: This study used a qualitative descriptive design, employing in-depth interviews with 30 carers recruited through networks known to one state branch of Alzheimer’s Australia. Emerging themes were validated in one focus group. Results: During the hospital stay carers experienced a paradox: being required to deliver care yet perceiving that they were being ignored in regard to decisions about care. The time in hospital was considered by some carers to be stressful, as they were concerned about the safety of the person with dementia. Many reported that discharge home was rarely planned and coordinated. Returning home carers found re-establishing and/or accessing new services challenging, with available services often inappropriate to need. Conclusion: The paradox of the care experience in the acute setting, whereby the carer was either invited, or sought, to deliver care, yet was excluded in staff decisions about that care, challenges the current communication and coordination of care. For people with dementia and their carers, there is a need for a coordinated seamless service that enables continued unbroken care and support from acute care to home. Carers also need support navigating the wide range of services available and importantly both carers and care providers may need to understand service boundaries. Recommendations: This study highlights the need to acknowledge the expertise of the carer, and their need for support. Enabling a smooth discharge from hospital and support to navigate care access in the community is paramount. These experiences provide insight into gaps in service provision and modifying existing services may lead to improved experiences

KW - dementia

KW - carer

KW - person centred care

KW - community services

U2 - 10.1177/1471301214554930

DO - 10.1177/1471301214554930

M3 - Article

VL - 1

SP - 1

EP - 12

JO - Dementia

JF - Dementia

SN - 1471-3012

IS - 1

ER -