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

Abstract

To investigate the quality of life (QoL) and well-being of people living with advanced dementia in care homes. 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. Participants had limited verbal abilities, but used non-vocal behaviours to communicate. These behaviours influenced their QoL and well-being. 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.