Understanding quality of life and well-being for people living with advanced dementia
evidence and practice    

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

Sian Hughes Student, college of health sciences, Bangor University, Bangor, Gwynedd, Wales
Bob Woods Professor, college of health sciences, Bangor University, Bangor, Gwynedd, Wales
Katherine Algar-Skaife Research officer, college of health sciences, Bangor University, Bangor, Gwynedd, Wales
Catrin Hedd Jones Lecturer in dementia studies, college of health sciences, Bangor University, Bangor, Gwynedd, Wales

Aim To investigate the quality of life (QoL) and well-being of people living with advanced dementia in care homes.

Method A mixed-methods approach was taken combining participant observations, interviews with the participants’ families and carers, and quantitative measurements. The quantitative measures included AwareCare assessments, QoL in Late-Stage Dementia scale ratings and semi‑structured interviews with relatives and staff members. Ryff’s psychological well-being framework, the Fairness, Respect, Equality, Identity, Dignity, Autonomy principles, and Kitwood’s indicators of well-being, were examined to attempt to identify contributors to QoL for people living with advanced dementia.

Results Participants had limited verbal abilities, but used non-vocal behaviours to communicate. These behaviours influenced their QoL and well-being.

Conclusion The indicators of well-being in Kitwood’s personhood model were helpful in describing how relatives and staff perceived the QoL of the person with dementia.

Nursing Older People. doi: 10.7748/nop.2019.e1129

Peer review

This article has been subject to external double-blind peer review and has been checked for plagiarism using automated software

Correspondence

psu34d@bangor.ac.uk

Conflict of interest

None declared

Hughes S, Woods B, Algar-Skaife K et al (2019) Understanding quality of life and well-being for people living with advanced dementia. Nursing Older People. doi: 10.7748/nop.2019.e1129

Published online: 20 February 2019