Generation of a function affect model for residents with advanced dementia

Aims and objectives: This article presents the generation of a model of care encompassing “function” and “affect” based on findings from a 2011 research project aimed at improving care delivery for people with advanced dementia. Objectives were to provide comprehensive and sustainable care, honouring and respecting the person. Background: Dementia is a debilitating, progressive, and terminal disease with a trajectory ranging from approximately 3 to 16 years, yet attention to end-of-life care, promoting comfort, alleviating suffering, and maximizing quality of life is frequently overlooked for people living in the advanced stages of the disease. Methods: The research project from which the model was drawn used a three-phase mixed methods approach at three residential aged care facilities (nursing homes) providing high care in New South Wales, Australia. Thematic analysis was elicited from focus group discussions with staff, family members, and carers of residents. Findings: Themes describe distinct dimensions of a model of care: “function” (dedication, designation, and deliberation) and “affect” (the personal outcomes revealed in relaxation, stimulation, and transformation). Conclusion: Reframing nursing practice from task and disease orientation to person centred and relationship focused is essential in meeting the complete needs of people with advanced dementia. This transformational model of care may be useful in adapting to other end-of-life care settings.