Rights statement: The final, definitive version of this article has been published in the Journal, Dementia, 18 (1), 2019, © SAGE Publications Ltd, 2019 by SAGE Publications Ltd at the Dementia page: https://journals.sagepub.com/home/dem on SAGE Journals Online: http://online.sagepub.com/
Accepted author manuscript, 779 KB, PDF document
Available under license: CC BY-NC: Creative Commons Attribution-NonCommercial 4.0 International License
Final published version
Research output: Contribution to Journal/Magazine › Journal article › peer-review
Research output: Contribution to Journal/Magazine › Journal article › peer-review
}
TY - JOUR
T1 - The experiences of family caregivers of people with advanced dementia living in nursing homes, with a specific focus on spouses
T2 - a narrative literature review
AU - Hennings, Jean
AU - Froggatt, Katherine Alison
N1 - The final, definitive version of this article has been published in the Journal, Dementia, 18 (1), 2019, © SAGE Publications Ltd, 2019 by SAGE Publications Ltd at the Dementia page: https://journals.sagepub.com/home/dem on SAGE Journals Online: http://online.sagepub.com/
PY - 2019/1
Y1 - 2019/1
N2 - Dementia affects individuals, families and their relationships. While there is increasing evidence about the experiences of family caregivers of people with dementia, relatively little is known of their experiences when their relatives are living in nursing homes with dementia. This narrative literature review aimed to synthesise current knowledge about family caregivers’ experience of having relatives living in nursing homes with advanced dementia, particularly focussing on community-dwelling spouses. Using a systematic approach, textual narrative synthesis was undertaken. Four themes were identified: changing relationships, the need for companionship, adjusting to new roles and relationships and anticipating death/looking towards the future. Two additional themes were present only for spouses: changing identity – feeling married, being married; and alone but… The review demonstrates that some aspects of spouses’ experiences are different from those of other family caregivers. Longitudinal studies are required to better understand spouses’ motivations to continue caring in this context and to find ways of supporting them.
AB - Dementia affects individuals, families and their relationships. While there is increasing evidence about the experiences of family caregivers of people with dementia, relatively little is known of their experiences when their relatives are living in nursing homes with dementia. This narrative literature review aimed to synthesise current knowledge about family caregivers’ experience of having relatives living in nursing homes with advanced dementia, particularly focussing on community-dwelling spouses. Using a systematic approach, textual narrative synthesis was undertaken. Four themes were identified: changing relationships, the need for companionship, adjusting to new roles and relationships and anticipating death/looking towards the future. Two additional themes were present only for spouses: changing identity – feeling married, being married; and alone but… The review demonstrates that some aspects of spouses’ experiences are different from those of other family caregivers. Longitudinal studies are required to better understand spouses’ motivations to continue caring in this context and to find ways of supporting them.
KW - dementia caregiving
KW - end of life
KW - nursing homes
KW - review
KW - spouses
U2 - 10.1177/1471301216671418
DO - 10.1177/1471301216671418
M3 - Journal article
VL - 18
SP - 303
EP - 322
JO - Dementia
JF - Dementia
SN - 1471-3012
IS - 1
ER -