TY - JOUR

T1 - A Collaborative approach: Care staff and families working together to safeguard the quality of life of residents living with advanced dementia

AU - Hughes, Sian

AU - Woods, Robert

AU - Algar-Skaife, Katherine

AU - Jelley, Hannah

AU - Jones, Catrin

N1 - The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Sian Hughes’ PhD studies are funded by a Knowledge Economy Skills Scholarship (KESS 2) from Bangor University in partnership with Fairways Care and the Drapers’ Company. The KESS 2 programme is funded by the European Social Fund.

PY - 2019/5/13

Y1 - 2019/5/13

N2 - Objectives: This study aimed to explore the quality of life and well-being of care home residents living with advanced dementia, how personalised care can be achieved where the person is completely dependent on others for care and how individuals' choices and human rights were upheld.Methods: The study design used a qualitative approach, with data collected through in-depth, semi-structured interviews with 8 family members, all of whom visited daily, and 8 care staff.Results: Emerging themes highlighted the importance of family involvement, signs of well-being, communication and the valued role of direct care staff.Discussion: Participants were able to identify factors of residents' well-being in residents living with advanced dementia. Family members who visited daily saw themselves working collaboratively with care staff to maintain the quality of life of their relatives and engage in proxy decision making. Regarding human rights, the emphasis was on avoiding abuse, rather than promoting well-being.

AB - Objectives: This study aimed to explore the quality of life and well-being of care home residents living with advanced dementia, how personalised care can be achieved where the person is completely dependent on others for care and how individuals' choices and human rights were upheld.Methods: The study design used a qualitative approach, with data collected through in-depth, semi-structured interviews with 8 family members, all of whom visited daily, and 8 care staff.Results: Emerging themes highlighted the importance of family involvement, signs of well-being, communication and the valued role of direct care staff.Discussion: Participants were able to identify factors of residents' well-being in residents living with advanced dementia. Family members who visited daily saw themselves working collaboratively with care staff to maintain the quality of life of their relatives and engage in proxy decision making. Regarding human rights, the emphasis was on avoiding abuse, rather than promoting well-being.

KW - advanced dementia

KW - human rights

KW - quality of life

KW - well-being

U2 - 10.1177/1179573519843872

DO - 10.1177/1179573519843872

M3 - Article

C2 - 31191071

VL - 11

SP - 1

EP - 9

JO - Journal of Central Nervous System Disease

JF - Journal of Central Nervous System Disease

SN - 1179-5735

ER -