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.

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.

Palliative care and quality of life for people with dementia: medical and psychosocial interventions.

BACKGROUND: Despite mounting evidence that principles of palliative care are appropriate in care for individuals with dementia they are often not applied. As a result, patients with dementia are often exposed to burdensome interventions that have little or no benefit and are not provided with psychosocial treatments. METHODS: Recommendations for applying palliative care principles in caring for people with dementia are provided, based on the WHO definition of palliative care, our clinical experience and some key literature reports. RESULTS: People with a diagnosis of an irreversible dementia such as Alzheimer's disease (AD) and their families are rarely informed that this is a terminal disease and palliative care principles are not discussed with them. They are applicable early in the course of illness when the person can still make end-of-life decisions. Palliative care can be used in conjunction with other therapies and services, such as hospice care that provide relief from pain and other distressing symptoms. The care should include keeping people with dementia involved in meaningful activities which decrease or eliminate behavioral symptoms of dementia. CONCLUSIONS: Educating families and professionals about palliative care is important as many professionals and non-professionals believe that this approach intends to hasten death, instead of affirming life and regarding dying as a normal process. Living, not just existing, with a dementing illness involves encouraging the person to continue to be involved in meaningful activities. Medical interventions should be compatible with goals of care and balance benefits and burdens for each intervention taking into consideration severity of dementia.

Evaluating the feasibility and acceptability of the Namaste Care program in long-term care settings in Canada.

BACKGROUND: Residents living and dying in long-term care (LTC) homes represent one of society's most frail and marginalized populations of older adults, particularly those residents with advanced dementia who are often excluded from activities that promote quality of life in their last months of life. The purpose of this study is to evaluate the feasibility, acceptability, and effects of Namaste Care: an innovative program to improve end-of-life care for people with advanced dementia. METHODS: This study used a mixed-method survey design to evaluate the Namaste Care program in two LTC homes in Canada. Pain, quality of life, and medication costs were assessed for 31 residents before and 6 months after they participated in Namaste Care. The program consisted of two 2-h sessions per day for 5 days per week. Namaste Care staff provided high sensory care to residents in a calm, therapeutic environment in a small group setting. Feasibility was assessed in terms of recruitment rate, number of sessions attended, retention rate, and any adverse events. Acceptability was assessed using qualitative interviews with staff and family. RESULTS: The feasibility of Namaste Care was acceptable with a participation rate of 89%. However, participants received only 72% of the sessions delivered and only 78% stayed in the program for at least 3 months due to mortality. After attending Namaste Care, participants' pain and quality of life improved and medication costs decreased. Family members and staff perceived the program to be beneficial, noting positive changes in residents. The majority of participants were very satisfied with the program, providing suggestions for ongoing engagement throughout the implementation process. CONCLUSIONS: These study findings support the implementation of the Namaste Care program in Canadian LTC homes to improve the quality of life for residents. However, further testing is needed on a larger scale.

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.

Help me, help me.

Disruptive vocalization and resisting personal care is a problem for staff in most skilled nursing facilities. Often these behaviors result in the resident being treated with antipsychotics. The Namaste Care program which takes place in a calm environment and offers a loving touch approach to care, has been successful in eliminating these behaviors. The room or space where Namaste Care takes place is as free from disruption as possible and as the resident is welcomed into the room, the calming music and scent of lavender surrounds them. In this case report, the resident stopped crying out as soon as she entered the room. This resident also became comfortable with being touched when touch was offered in a slow, loving manner. Much to the delight of staff this had a "trickle down" effect as the resident stopped resisting care even when she was out of the Namaste Care room. The result was that this resident's last year of life was filled with loving care until she took her last breath.

Implementing the Namaste Care Program for residents with advanced dementia: exploring the perceptions of families and staff in UK care homes.

BACKGROUND: Increasing numbers of older people with advanced dementia are cared for in care homes. No cure is available, so research focused on improving quality of life and quality of care for people with dementia is needed to support them to live and die well. The Namaste Care programme is a multi-dimensional care program with sensory, psycho-social and spiritual components intended to enhance quality of life and quality of care for people with advanced dementia. The aim of the study was to establish whether the Namaste Care program can be implemented in UK care homes; and what effect Namaste Care has on the quality of life of residents with advanced dementia, their families and staff. This article explores the qualitative findings of the study, reporting the effect of the programme on the families of people with advanced dementia and care home staff, and presenting their perceptions of change in care. METHODS: An organisational action research methodology was used. Focus groups and interviews were undertaken pre/post implementation of the Namaste Care program. The researcher kept a reflective diary recording data on the process of change. A comments book was available to staff and relatives in each care home. Data was analysed thematically within each care home and then across all care homes. RESULTS: Six care homes were recruited in south London: one withdrew before the study was underway. Of the five remaining care homes, four achieved a full Namaste Care program. One care home did not achieve the full program during the study, and another discontinued Namaste Care when the study ended. Every home experienced management disruption during the study. Namaste Care challenged normal routinised care for older people with advanced dementia. The characteristics of care uncovered before Namaste was implemented were: chaos and confusion, rushing around, lack of trust, and rewarding care. After the programme was implemented these perceptions were transformed, and themes of calmness, reaching out to each other, seeing the person, and, enhanced well-being, emerged. CONCLUSIONS: Namaste Care can enrich the quality of life of older people with advanced dementia in care homes. The program was welcomed by care home staff and families, and was achieved with only modest expenditure and no change in staffing levels. The positive impact on residents quality of life influenced the well-being of family carers. Care staff found the changes in care enjoyable and rewarding. Namaste Care was valued for the benefits seen in residents; the improvement in relationships; and the shift towards a person-centred, relationship-based culture of care brought about by introducing the program. Namaste Care deserves further exploration and investigation including a randomised controlled trial.

Using the ecological framework to identify barriers and enablers to implementing Namaste Care in Canada's long-term care system.

BACKGROUND: Higher acuity of care at the time of admission to long-term care (LTC) is resulting in a shorter period to time of death, yet most LTC homes in Canada do not have formalized approaches to palliative care. Namaste Care is a palliative care approach specifically tailored to persons with advanced cognitive impairment who are living in LTC. The purpose of this study was to employ the ecological framework to identify barriers and enablers to an implementation of Namaste Care. METHODS: Six group interviews were conducted with families, unlicensed staff, and licensed staff at two Canadian LTC homes that were planning to implement Namaste Care. None of the interviewees had prior experience implementing Namaste Care. The resulting qualitative data were analyzed using a template organizing approach. RESULTS: We found that the strongest implementation enablers were positive perceptions of need for the program, benefits of the program, and fit within a resident-centred or palliative approach to care. Barriers included a generally low resource base for LTC, the need to adjust highly developed routines to accommodate the program, and reliance on a casual work force. CONCLUSIONS: We conclude that within the Canadian LTC system, positive perceptions of Namaste Care are tempered by concerns about organizational capacity to support new programming.

Effects of continuous activity programming on behavioral symptoms of dementia.

OBJECTIVES: To describe the effect of continuous activity programming on behavioral symptoms of dementia. DESIGN: Observational study based on quality improvement data. SETTING: Two Dementia Special Care Units in different locations. PARTICIPANTS: Ninety veterans with dementia provided with long-tem care. INTERVENTION: Continuous activity programming. MEASUREMENTS: Data were extracted from the MDS files and obtained by questionnaires filled out by staff members not involved in activity programming. RESULTS: Two settings of continuous activity programming, requiring no additional staffing, resulted in increased number of hours residents were involved in activities, decreased use of psychotropic medications, improved nutrition, and increased family satisfaction without additional staff. When additional staff was available, more intensive continuous activity programming further decreased agitation and improved sleep. CONCLUSION: Continuous activity programming may be instituted without staffing change but the benefit is increased if additional staffing is available.

Effects of Namaste Care on residents who do not benefit from usual activities.

Namaste Care is a program designed to offer meaningful activities to nursing home residents with advanced dementia or those who cannot be engaged in traditional activities. This 7-day-a-week program is staffed by specially trained nursing assistants who provide activities of daily living in an unhurried manner, with a ''loving touch'' approach to care. The program takes place in a room with lowered lighting, soft music playing, and the scent of lavender. Analyses of Minimum Data Set data before the program were implemented and after residents were involved in the program for at least 30 days showed a decrease in residents' withdrawal, social interaction, delirium indicators, and trend for decreased agitation. Namaste Care helps families feel that in spite of the many losses experienced because of the disease process, something special can still help their loved one to feel comforted, cared for, and cared about in a unique loving environment.