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.

Effects of the Namaste Care Family programme on quality of life of nursing home residents with advanced dementia and on family caregiving experiences: study protocol of a cluster-randomised controlled trial.

INTRODUCTION: Quality of life of people with advanced dementia living in nursing homes is often suboptimal. Family caregivers can feel frustrated with limited contact with their relatives, which results in visits that are perceived as stressful and not very meaningful. Few psychosocial interventions are specifically developed for people with advanced dementia, and actively involve family caregivers or volunteers. Also, interventions usually stop when it becomes difficult for people to participate. The Namaste Care Family programme aims to increase the quality of life of people with advanced dementia, and improve family caregiving experiences through connecting to people and making them comfortable. METHODS AND ANALYSIS: Our study will evaluate the effects of the Namaste Care Family programme on quality of life of people with advanced dementia living in nursing homes and family caregiving experiences using a cluster-randomised controlled trial. Longitudinal analyses will be performed taking into account clustering at the nursing home level. Both a cost-effectiveness and a cost-utility analysis from a societal perspective will be performed. We will modify the Namaste Care Family programme to increase family and volunteer involvement in ongoing and end-of-life care. Data collection involves assessments by family caregivers, nursing staff and elderly care physicians using questionnaires, and observations by the researchers at baseline and multiple times over 12 months. The last questionnaire will be sent up to month 24 after the death of the person with dementia. During semistructured interviews, the feasibility, accessibility and sustainability of the Namaste Care Family programme will be assessed. ETHICS AND DISSEMINATION: The study protocol is approved by the Medical Ethics Review Committee of the VU University Medical Center in Amsterdam (protocol no. 2016.399) and registered with the Nederlands Trial Register (NTR5692). The findings will be disseminated via publications in peer-reviewed journals, conference presentations and presentations for healthcare professionals where appropriate. TRIAL REGISTRATION NUMBER: NTR5692.

The Namaste Care programme can reduce behavioural symptoms in care home residents with advanced dementia.

OBJECTIVE: The objective of the study was to evaluate the effects of the Namaste Care programme on the behavioural symptoms of residents with advanced dementia in care homes and their pain management. METHODS: Six dementia care homes collaborated in an action research study-one withdrew. Inclusion criteria were a dementia diagnosis and a Bedford Alzheimer's Nursing Severity Scale score of >16. Primary research measures were the Neuropsychiatric Inventory-Nursing Homes (NPI-NH) and Doloplus-2 behavioural pain assessment scale for the elderly. Measures were recorded at baseline and at three 1-2 monthly intervals after Namaste Care started. RESULTS: Management disruption occurred across all care homes. The severity of behavioural symptoms, pain and occupational disruptiveness (NPI-NH) decreased in four care homes. Increased severity of behavioural symptoms in one care home was probably related to poor pain management, reflected in increased pain scores, and disrupted leadership. Comparison of NPI-NH scores showed that severity of behavioural symptoms and occupational disruptiveness were significantly lower after initiation of Namaste Care (n = 34, p < 0.001) and after the second interval (n = 32, p < 0.001 and p = 0.003). However, comparison of these measures in the second and third intervals revealed that both were slightly increased in the third interval (n = 24, p < 0.001 and p = 0.001). CONCLUSIONS: Where there are strong leadership, adequate staffing, and good nursing and medical care, the Namaste Care programme can improve quality of life for people with advanced dementia in care homes by decreasing behavioural symptoms. Namaste is not a substitute for good clinical care.