TY - JOUR
T1 - Providing informal care to a person living with dementia
T2 - the experiences of informal carers in Australia
AU - Engel, Lidia
AU - Loxton, April
AU - Bucholc, Jessica
AU - Muldowney, Anne
AU - Mihalopoulos, Cathrine
AU - McCaffrey, Nikki
N1 - Funding Information:
This study was funded by Dementia Australia Research Foundation. The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; or decision to submit the manuscript for publication. LE was supported by a Fellowship from the Institute for Health Transformation (Deakin University). The authors would like to thank the informal carers who participated in this research as well as Carers Victoria and Umbrella Dementia Cafes for their assistance with recruiting participants. All authors were involved in the development of the study and the write-up of the manuscript. LE supervised the overall project. LE and JB led the recruitment and interviewed study participants. LE and AL led the data analysis and created the first draft of the manuscript. All authors have commented on earlier drafts of the manuscript and approved the final version.
Funding Information:
This study was funded by Dementia Australia Research Foundation. The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; or decision to submit the manuscript for publication. LE was supported by a Fellowship from the Institute for Health Transformation (Deakin University). The authors would like to thank the informal carers who participated in this research as well as Carers Victoria and Umbrella Dementia Cafes for their assistance with recruiting participants.
Publisher Copyright:
© 2022
PY - 2022/9
Y1 - 2022/9
N2 - Most people with dementia live at home and rely on family and friends who provide unpaid care and support. Informal carers of people with dementia are often described as ‘invisible second patients’, reflecting the higher-than-normal rates of depression, stress and physical illness. To inform service delivery and the development of evidence-based interventions targeting informal carers of people with dementia, it is important to understand their experiences. The aim of this study was to examine the experiences of caregivers in providing informal care to a person living with dementia and to examine how providing this care impacts their own quality of life. Semi-structured interviews were conducted with 16 informal carers in Australia. Recordings of the interviews were transcribed verbatim and analysed using an inductive approach (thematic analysis) which revealed strong narratives from informal carers regarding (1) available support, (2) the health impacts of caring, (3) new roles and responsibilities, and (4) the motivations around caring. The findings of this study reinforce that a comprehensive approach is needed in supporting informal carers in their caring role, ensuring sustainability of the aged care system and quality of life for people living with dementia.
AB - Most people with dementia live at home and rely on family and friends who provide unpaid care and support. Informal carers of people with dementia are often described as ‘invisible second patients’, reflecting the higher-than-normal rates of depression, stress and physical illness. To inform service delivery and the development of evidence-based interventions targeting informal carers of people with dementia, it is important to understand their experiences. The aim of this study was to examine the experiences of caregivers in providing informal care to a person living with dementia and to examine how providing this care impacts their own quality of life. Semi-structured interviews were conducted with 16 informal carers in Australia. Recordings of the interviews were transcribed verbatim and analysed using an inductive approach (thematic analysis) which revealed strong narratives from informal carers regarding (1) available support, (2) the health impacts of caring, (3) new roles and responsibilities, and (4) the motivations around caring. The findings of this study reinforce that a comprehensive approach is needed in supporting informal carers in their caring role, ensuring sustainability of the aged care system and quality of life for people living with dementia.
KW - Australia
KW - Dementia
KW - Informal care
KW - Qualitative research
KW - Quality of Life
UR - http://www.scopus.com/inward/record.url?scp=85131399799&partnerID=8YFLogxK
U2 - 10.1016/j.archger.2022.104742
DO - 10.1016/j.archger.2022.104742
M3 - Article
C2 - 35671552
AN - SCOPUS:85131399799
SN - 0167-4943
VL - 102
JO - Archives of Gerontology and Geriatrics
JF - Archives of Gerontology and Geriatrics
M1 - 104742
ER -