Research output: Contribution to Journal/Magazine › Journal article › peer-review
Research output: Contribution to Journal/Magazine › Journal article › peer-review
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TY - JOUR
T1 - Spouse caregivers of people with advanced dementia in nursing homes
T2 - a longitudinal narrative study
AU - Hennings, Jean
AU - Froggatt, Katherine
AU - Payne, Sheila
PY - 2013/7
Y1 - 2013/7
N2 - Background: Dementia is a life limiting illness and is becoming a major cause of death in developed countries. Many people with dementia die in nursing homes or long-term residential care settings. Spouse caregivers of people with dementia living in nursing homes find themselves in a position which is difficult to understand and live with.Aim: To explore the caregiving experiences of spouse carers of people with advanced dementia living in nursing homes.Design: Longitudinal narrative study using three sequential interviews and diary accounts.Setting/participants: Spouse caregivers of people with dementia nearing the end of life were recruited from two nursing homes in Northern England.Results: Twenty-seven interviews were conducted and seven diaries collected from 10 spouse caregivers (7 women and 3 men). We demonstrate that for this group the experience of caregiving is one of struggle to live in ‘two worlds’, the world of the nursing home and the world of wider society, where, in both settings, their role is often ambiguous and their position liminal. We also identify that feelings of guilt associated with nursing home placement of a spouse with dementia endure far beyond the time of the move.Conclusions: Nursing home staff need to acknowledge spouse carers in their own right, inviting them to tell their stories. We recommend that communication skills be included in educational programmes for nursing home staff. Further research is needed to determine the shape and context of carer needs assessment and support, as recommended in health policy.
AB - Background: Dementia is a life limiting illness and is becoming a major cause of death in developed countries. Many people with dementia die in nursing homes or long-term residential care settings. Spouse caregivers of people with dementia living in nursing homes find themselves in a position which is difficult to understand and live with.Aim: To explore the caregiving experiences of spouse carers of people with advanced dementia living in nursing homes.Design: Longitudinal narrative study using three sequential interviews and diary accounts.Setting/participants: Spouse caregivers of people with dementia nearing the end of life were recruited from two nursing homes in Northern England.Results: Twenty-seven interviews were conducted and seven diaries collected from 10 spouse caregivers (7 women and 3 men). We demonstrate that for this group the experience of caregiving is one of struggle to live in ‘two worlds’, the world of the nursing home and the world of wider society, where, in both settings, their role is often ambiguous and their position liminal. We also identify that feelings of guilt associated with nursing home placement of a spouse with dementia endure far beyond the time of the move.Conclusions: Nursing home staff need to acknowledge spouse carers in their own right, inviting them to tell their stories. We recommend that communication skills be included in educational programmes for nursing home staff. Further research is needed to determine the shape and context of carer needs assessment and support, as recommended in health policy.
KW - Caregiver
KW - spouses
KW - nursing homes
KW - dementia
KW - qualitative research
KW - palliative care
U2 - 10.1177/0269216313479685
DO - 10.1177/0269216313479685
M3 - Journal article
VL - 27
SP - 683
EP - 691
JO - Palliative Medicine
JF - Palliative Medicine
SN - 0269-2163
IS - 7
ER -