Approaching the end of life and dying with dementia in care homes: the accounts of family carers

J Hennings, K Froggatt, J Keady

Research output: Contribution to journalReview article

49 Citations (Scopus)

Abstract

Research into end of life and dying with dementia in care homes from the family carer's perspective is limited. From the available evidence, it appears that family carers find themselves in an unfamiliar situation about which they lack knowledge and experience. Whilst dementia tends not to be acknowledged as a terminal illness by many family carers, they are expected to make end of life decisions on behalf of their relatives. Family carer decision-making is underpinned by values of quality of life, previously expressed wishes, comfort provision and dignity preservation. This is often approached when family carers are grieving for the anticipated loss of their relative and have their own personal needs that require to be addressed. Within a care home setting, a curative care–palliative care split is unhelpful in resolving these tensions and a model of comprehensive care appears a more appropriate approach. This requires ongoing communication between the person with dementia, family members and professionals from the early stages of the condition.
Original languageEnglish
Pages (from-to)114-127
Number of pages14
JournalReviews in Clinical Gerontology
Volume20
Issue number2
Early online date22 Apr 2010
DOIs
Publication statusPublished - May 2010
Externally publishedYes

Fingerprint

Home Care Services
Caregivers
Dementia
Value of Life
Decision Making
Communication
Quality of Life
Research

Cite this

@article{4300b0437c7448de8c79251b260605e7,
title = "Approaching the end of life and dying with dementia in care homes: the accounts of family carers",
abstract = "Research into end of life and dying with dementia in care homes from the family carer's perspective is limited. From the available evidence, it appears that family carers find themselves in an unfamiliar situation about which they lack knowledge and experience. Whilst dementia tends not to be acknowledged as a terminal illness by many family carers, they are expected to make end of life decisions on behalf of their relatives. Family carer decision-making is underpinned by values of quality of life, previously expressed wishes, comfort provision and dignity preservation. This is often approached when family carers are grieving for the anticipated loss of their relative and have their own personal needs that require to be addressed. Within a care home setting, a curative care–palliative care split is unhelpful in resolving these tensions and a model of comprehensive care appears a more appropriate approach. This requires ongoing communication between the person with dementia, family members and professionals from the early stages of the condition.",
keywords = "care homes, nursing homes, dementia, family carer, end of life, dying",
author = "J Hennings and K Froggatt and J Keady",
year = "2010",
month = "5",
doi = "10.1017/S0959259810000092",
language = "English",
volume = "20",
pages = "114--127",
journal = "Reviews in Clinical Gerontology",
issn = "0959-2598",
publisher = "Cambridge University Press",
number = "2",

}

Approaching the end of life and dying with dementia in care homes : the accounts of family carers. / Hennings, J; Froggatt, K ; Keady, J.

In: Reviews in Clinical Gerontology, Vol. 20, No. 2, 05.2010, p. 114-127.

Research output: Contribution to journalReview article

TY - JOUR

T1 - Approaching the end of life and dying with dementia in care homes

T2 - the accounts of family carers

AU - Hennings, J

AU - Froggatt, K

AU - Keady, J

PY - 2010/5

Y1 - 2010/5

N2 - Research into end of life and dying with dementia in care homes from the family carer's perspective is limited. From the available evidence, it appears that family carers find themselves in an unfamiliar situation about which they lack knowledge and experience. Whilst dementia tends not to be acknowledged as a terminal illness by many family carers, they are expected to make end of life decisions on behalf of their relatives. Family carer decision-making is underpinned by values of quality of life, previously expressed wishes, comfort provision and dignity preservation. This is often approached when family carers are grieving for the anticipated loss of their relative and have their own personal needs that require to be addressed. Within a care home setting, a curative care–palliative care split is unhelpful in resolving these tensions and a model of comprehensive care appears a more appropriate approach. This requires ongoing communication between the person with dementia, family members and professionals from the early stages of the condition.

AB - Research into end of life and dying with dementia in care homes from the family carer's perspective is limited. From the available evidence, it appears that family carers find themselves in an unfamiliar situation about which they lack knowledge and experience. Whilst dementia tends not to be acknowledged as a terminal illness by many family carers, they are expected to make end of life decisions on behalf of their relatives. Family carer decision-making is underpinned by values of quality of life, previously expressed wishes, comfort provision and dignity preservation. This is often approached when family carers are grieving for the anticipated loss of their relative and have their own personal needs that require to be addressed. Within a care home setting, a curative care–palliative care split is unhelpful in resolving these tensions and a model of comprehensive care appears a more appropriate approach. This requires ongoing communication between the person with dementia, family members and professionals from the early stages of the condition.

KW - care homes

KW - nursing homes

KW - dementia

KW - family carer

KW - end of life

KW - dying

U2 - 10.1017/S0959259810000092

DO - 10.1017/S0959259810000092

M3 - Review article

VL - 20

SP - 114

EP - 127

JO - Reviews in Clinical Gerontology

JF - Reviews in Clinical Gerontology

SN - 0959-2598

IS - 2

ER -