TY - JOUR

T1 - Understanding quality of life and well-being for people living with advanced dementia.

AU - Hughes, Sian

AU - Woods, Robert

AU - Algar-Skaife, Katherine

AU - Jones, Catrin

N1 - This is the author accepted manuscript. The final version is available via the DOI in this record.

PY - 2019/3/22

Y1 - 2019/3/22

N2 - The number of individuals living with advanced dementia in the care home sector is growing as people live longer. People living with advanced dementia have complex, individual needs and identifying contributors of their well-being is essential in maintaining and promoting their quality of life. Currently, little is known on quality of life and well-being in advanced dementia. A mixed method approach was used to understand the lived daily experience of residents with advanced dementia. The article presents a case study of two residents, " Graham and Martha". Methods include AwareCare observations, QUALID ratings and qualitative interviews with relatives and key staff members, gathered over a period of eight months. Although they both had limited verbal ability, they demonstrated the urge to communicate and non-vocal behaviours were used convey their feelings. The findings suggest that relatives are reassured/comforted where they see their relatives expressing themselves, and happier when they could maintain a regular caring role. Relatives also were appreciative of staff caring for the individual as a person. However, conflict was evident when care staff and relatives did not agree on what would be in the best interests of the person living with advanced dementia. Kitwood’s personhood model was especially helpful in considering well-being in advanced dementia.

AB - The number of individuals living with advanced dementia in the care home sector is growing as people live longer. People living with advanced dementia have complex, individual needs and identifying contributors of their well-being is essential in maintaining and promoting their quality of life. Currently, little is known on quality of life and well-being in advanced dementia. A mixed method approach was used to understand the lived daily experience of residents with advanced dementia. The article presents a case study of two residents, " Graham and Martha". Methods include AwareCare observations, QUALID ratings and qualitative interviews with relatives and key staff members, gathered over a period of eight months. Although they both had limited verbal ability, they demonstrated the urge to communicate and non-vocal behaviours were used convey their feelings. The findings suggest that relatives are reassured/comforted where they see their relatives expressing themselves, and happier when they could maintain a regular caring role. Relatives also were appreciative of staff caring for the individual as a person. However, conflict was evident when care staff and relatives did not agree on what would be in the best interests of the person living with advanced dementia. Kitwood’s personhood model was especially helpful in considering well-being in advanced dementia.

U2 - 10.7748/nop.2019.e1129

DO - 10.7748/nop.2019.e1129

M3 - Article

VL - 31

SP - 18

EP - 24

JO - Nursing Older People

JF - Nursing Older People

SN - 1472-0795

IS - 2

ER -