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BACKGROUND: Namaste Care offers practical skills for healthcare providers, volunteers, and families to meaningfully engage individuals with dementia in activities (e.g., music, massage, reminiscing, socialization, aromatherapy, snacks). A hospital-based specialized dementia care unit for patients with mid- to late-stage dementia offered an adapted version of the Namaste Care program, which was called Meaningful Moments. The aim of this study was to assess the acceptability and preliminary effects of this novel approach using trained volunteers for older adults with mid- to late-stage dementia. METHODS: A mixed methods multiphase design was used. Qualitative description was used to explore acceptability of the Meaningful Moments program delivered over 6 months through focus groups (e.g., charge nurses, therapeutic recreationists, nurses, social workers) and individual interviews with one volunteer and two family members. A prospective pre-post-test study design was used to evaluate the preliminary effects of the program for patients with dementia and family members. Outcomes included quality of life, neuropsychiatric symptoms, and pain for patients with dementia and family carer role stress and the quality of visits for families. Data were collected from June 2018 to April 2019. Descriptive analyses of participants' characteristics were expressed as a mean (standard deviation [SD]) for continuous variables and count (percent) for categorical variables. Focus group and individual interview data were analyzed using thematic analysis. The generalized estimating equations (GEE) method was used to assess change in the repeated measures outcome data. RESULTS: A total of 15 patients received the Meaningful Moments interventions. Families, staff, and volunteers perceived that patients experienced benefits from Meaningful Moments. Staff, volunteers, and families felt fulfilled in their role of engaging patients in the Meaningful Moments program. Individualized activities provided by volunteers were perceived as necessary for the patient population. There were no statistically significant improvements in patient outcomes. There was a statistically significant decline in family carer role stress. CONCLUSIONS: Using a one-on-one approach by volunteers, patients experienced perceived benefits such as improved mood and opportunities for social interactions. There is a need for tailored activities for older adults with advanced dementia through practical strategies that can offer benefit to patients.
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Demência , Voluntários , Humanos , Demência/terapia , Demência/psicologia , Masculino , Feminino , Idoso , Idoso de 80 Anos ou mais , Voluntários/psicologia , Estudos Prospectivos , Cuidadores/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Qualidade de Vida/psicologia , Pessoa de Meia-IdadeRESUMO
BACKGROUND: Long-term care (LTC) settings are becoming home to an increasing number of people living with advanced or late-stage dementia. Residents living with advanced dementia represent some of society's most vulnerable and socially excluded populations and are thus at an increased risk of social isolation. A multisensory intervention tailored to this population, Namaste Care, has been developed to improve quality of life for residents living with advanced dementia in LTC homes. To date, limited research has explored the perspectives of staff in implementing the Namaste Care program with an emphasis on social inclusion of residents in Canadian LTC homes. This study aimed to describe the perspectives of LTC staff on the implementation facilitators and barriers of Namaste Care as a program to support the social inclusion of residents living with advanced dementia. METHODS: Using a qualitative descriptive design, semi-structured interviews (n = 12) and focus groups (n = 6) were conducted in two LTC homes in Southern Ontario, Canada, over a 6-month period. Convenience sampling was used to recruit LTC home staff from the two participating sites. Thematic analysis was used to analyze data. RESULTS: LTC staff (n = 46) emphasized the program's ability to recognize the unique needs of residents with advanced dementia, and also stated its potential to facilitate meaningful connections between families and residents, as well as foster care partnerships between staff and families. Findings indicated staff also perceived numerous facilitators and barriers to Namaste Care. In particular, providing staff with dedicated time for Namaste Care and implementing volunteer and family participation in the program were seen as facilitators, whereas the initial perception of the need for extra staff to deliver Namaste Care and identifying times in the day where Namaste Care was feasible for residents, families, and staff, were seen as barriers. CONCLUSIONS: LTC staff recognized the need for formalized programs like Namaste Care to address the biopsychosocial needs of residents with advanced dementia and offer positive care partnership opportunities between staff and family members. Although staffing constraints remain the largest barrier to effective implementation, staff valued the program and made suggestions to build LTC home capacity for Namaste Care.
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Demência , Assistência de Longa Duração , Humanos , Qualidade de Vida , Pesquisa Qualitativa , Demência/epidemiologia , Demência/terapia , Demência/psicologia , Ontário/epidemiologiaRESUMO
AIMS AND OBJECTIVES: To enhance the practice of a person-centred palliative approach in long-term care. BACKGROUND: Implementing a person-centred palliative approach in long-term care entails placing residents at the centre of care planning that attends to the 'whole' person, rather than prioritising biomedical needs. DESIGN: We conducted a four-stage directed content analysis of long-term care progress notes to meet our study aims and applied the EQUATOR guidelines for qualitative research publication (COREQ). METHODS: We qualitatively analysed 78 resident charts across three long-term care homes in southern Ontario to capture the extent to which person-centred care was absent, initiated or implemented in different types of documented care interactions. RESULTS: Most residents had interactions related to daily care activities (65/78, 83%), social concerns (65/78, 83%) and treatment decisions (53/78, 68%). By contrast, interactions around pain and discomfort (34/78, 44%) and spirituality (27/78, 35%) were documented for less than half of the residents. Almost all (92%) residents had at least one progress note where staff initiated person-centred care by documenting their preference for a certain type of care, but only a third had at least one progress note that suggested their preference was implemented (35%). CONCLUSIONS: While person-centred care is often initiated by nurses and other allied health professionals, changes to care plans to address resident preferences are implemented less often. Nurses and other allied health professionals should be encouraged to elicit care preferences crucial for holistic care planning and equipped with the skills and support to enact collaborative care planning. RELEVANCE TO CLINICAL PRACTICE: Collaborative care planning appears relatively absent in charted progress notes, constraining the full implementation of a person-centred palliative approach to care. PATIENT OR PUBLIC CONTRIBUTION: An advisory group consisting of long-term care resident and staff representatives informed the overall study design and dissemination of the results.
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Assistência de Longa Duração , Assistência Centrada no Paciente , Humanos , Assistência Centrada no Paciente/métodos , Pessoal Técnico de Saúde , Pesquisa Qualitativa , Ontário , Cuidados PaliativosRESUMO
BACKGROUND: While advance care planning (ACP) has been shown to improve the quality of end-of-life (EOL) communication and palliative care, it is rarely practiced in long term care (LTC) homes, where staff time to support the process is limited. This study examines the potential of a publicly available self-directed ACP workbook distributed to LTC residents to encourage ACP reflection and communication. METHODS: Recruitment took place across three LTC homes, between June 2018 and July 2019. To be eligible, residents had to have medical stability, cognitive capacity, and English literacy. The study employed a mixed methods concurrent design using the combination of ranked (quantitative) and open (qualitative) workbook responses to examine documented care preferences and ACP reflections and communications. RESULTS: 58 residents initially agreed to participate in the study of which 44 completed self-directed ACP workbooks. Our combined quantitative and qualitative results suggested that the workbooks supported the elicitation of a range of resident care preferences of relevance for EOL care planning and decision making. For example, ranked data highlighted that most residents want to remain involved in decisions pertaining to their care (70%), even though less than half expect their wishes to be applied without discretion (48%). Ranked data further revealed many residents value quality of life over quantity of life (55%) but a sizable minority are concerned they will not receive enough care at EOL (20%). Open comments affirmed and expanded on ranked data by capturing care preferences not explored in the ranked data such as preferences around spiritual care and post mortem planning. Analysis of all open comments also suggested that while the workbook elicited many reflections that could be readily communicated to family/friends or staff, evidence that conversations had occurred was less evident in recorded workbook responses. CONCLUSIONS: ACP workbooks may be useful for supporting the elicitation of resident care preferences and concerns in LTC. Developing follow up protocols wherein residents are supported in communicating their workbook responses to families/friends and staff may be a critical next step in improving ACP engagement in LTC. Such protocols would require staff training and an organizational culture that empowers staff at all levels to engage in follow up conversations with residents.
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Planejamento Antecipado de Cuidados , Assistência de Longa Duração , Assistência Terminal , Comunicação , Humanos , Casas de Saúde , Qualidade de VidaRESUMO
The current study aimed to investigate the effects of a Namaste care program on the quality of life of 25 women with late-stage Alzheimer's disease. The program was implemented two hours daily and four days per week for six months in a nursing facility, Tehran, Iran. Women's quality of life was measured using the Persian version of the Quality of Life in Late-Stage Dementia scale before and after the program implementation. After a six-month intervention with the Namaste care program, the total score of quality of life significantly decreased (17.79 ± 1.10 at the end of trial compared with 24.67 ± 1.62 at baseline, P = 0.01), indicating improved quality of life. This effect was obtained after controlling for demographic variables and comorbidities. Hence, it seems that the Namaste care program might be an effective supportive method to improve the quality of life of women with late-stage Alzheimer's disease in Iranian culture. However, further large-sample studies are needed to investigate the generalizability of the findings.
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Doença de Alzheimer , Demência , Feminino , Humanos , Irã (Geográfico) , Casas de Saúde , Projetos Piloto , Qualidade de VidaRESUMO
BACKGROUND: Despite increased annual mortality in long-term care (LTC) homes, research has shown that care of dying residents and their families is currently suboptimal in these settings. The purpose of this study was to evaluate resident and family outcomes associated with the Strengthening a Palliative Approach in LTC (SPA-LTC) program, developed to help encourage meaningful end of life discussions and planning. METHODS: The study employs a mixed method design in four LTC homes across Southern Ontario. Data were collected from residents and families of the LTC homes through chart reviews, interviews, and focus groups. Interviews with family who attended a Palliative Care Conference included both closed-ended and open-ended questions. RESULTS: In total, 39 residents/families agreed to participate in the study. Positive intervention outcomes included a reduction in the proportion of emergency department use at end of life and hospital deaths for those participating in SPA-LTC, improved support for families, and increased family involvement in the care of residents. For families who attended a Palliative Care Conference, both quantitative and qualitative findings revealed that families benefited from attending them. Residents stated that they appreciated learning about a palliative approach to care and being informed about their current status. CONCLUSIONS: The benefits of SPA-LTC for residents and families justify its continued use within LTC. Study results also suggest that certain enhancements of the program could further promote future integration of best practices within a palliative approach to care within the LTC context. However, the generalizability of these results across LTC homes in different regions and countries is limited given the small sample size.
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Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Avaliação de Programas e Projetos de Saúde/métodos , Idoso , Idoso de 80 Anos ou mais , Feminino , Grupos Focais/métodos , Humanos , Masculino , Pessoa de Meia-Idade , Ontário , Projetos Piloto , Pesquisa Qualitativa , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: This paper details a subset of the findings from a participatory action research project exploring a palliative intervention in long-term care sites across Canada. The findings presented in this paper relate to understanding compassion within the context of a palliative approach to long-term care. METHODS: Findings presented are drawn from qualitative interviews and focus groups with residents, family members, healthcare providers, and managers from 4 long-term care sites across 4 provinces in Canada. In total, there were 117 individuals (20 residents, 16 family members, 72 healthcare providers, and 9 managers) who participated in one of 19 focus groups. Data was analyzed by multiple members of the research team in accordance with thematic analysis. Individual concepts were organized into themes across the different focus groups and the results were used to build a conceptual understanding of compassion within Long Term Care . FINDINGS: Two themes, each comprised of 5 sub-themes, emerged from the data. The first theme 'Conceptualizing Compassion in Long-Term Care generated a multidimensional understanding of compassion that was congruent with previous theoretical models. 'Organizational Compassion: resources and staffing', the second major theme, focused on the operationalization of compassion within the practice setting and organizational culture. Organizational Compassion subthemes focused on how compassion could support staff to enact care for the residents, the families, one another, and at times, recognizing their pain and supporting it through grief and mourning. CONCLUSIONS: Results suggest that compassion is an essential part of care and relationships within long-term care, though it is shaped by personal and professional relational aspects of care and bound by organizational and systemic issues. Findings suggest that compassion may be an under-recognised, but essential element in meeting the promise of person-centred care within long-term care environments.
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Empatia , Família , Pessoal de Saúde/normas , Assistência de Longa Duração/normas , Pesquisa Qualitativa , Instituições de Cuidados Especializados de Enfermagem/normas , Atitude do Pessoal de Saúde , Canadá/epidemiologia , Família/psicologia , Feminino , Grupos Focais , Pessoal de Saúde/psicologia , Humanos , Assistência de Longa Duração/psicologia , MasculinoRESUMO
The discourse of dying alone is negatively weighted and models of a good death identify not dying alone as a key outcome. Understanding why dying alone is viewed negatively and its effects on care is a priority. In separate focus groups with long-term care residents, family caregivers, and staff, we identified evidence for four different perspectives on the importance of presence at the time of death. However, while each individual had their own unique perspective on dying alone, the predominant view expressed across respondent groups was that having human connection near the end of one's life was important.
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Atitude Frente a Morte , Cuidados Paliativos/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Feminino , Grupos Focais , Humanos , Assistência de Longa Duração , Masculino , Pessoa de Meia-Idade , Adulto JovemRESUMO
Neurologically healthy adults tend to display a reliable leftward perceptual bias during visuospatial tasks, a phenomenon known as pseudoneglect. However, the phenomenon in older adults is not well understood, and a synthesis of research that examines pseudoneglect using the line bisection task, as well as other tasks, in the context of aging is lacking. The aim of the current systematic review is to integrate the available research on pseudoneglect in late adulthood, and to discuss the association between age and a bias to the left hemispace. The systematic search revealed that five different tasks have been used to examine pseudoneglect in younger and older adults, and that participants over 60 years of age have demonstrated inconsistent perceptual biases (e.g., enhanced leftward bias, suppressed leftward bias, and rightward bias). Based on current evidence, although some age-related trends in the perceptual bias can be identified within each task, no firm conclusions about the effects of age on pseudoneglect can be drawn. A number of recommendations for future research are outlined throughout the review, including use of smaller age ranges within age groups, differentiating between neurologically healthy participants and those with clinical diagnoses, continued examination of gender, and consistent use of stimuli and methods of analyses within each task to improve internal comparability.
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Viés de Atenção/fisiologia , Transtornos da Percepção/fisiopatologia , Percepção Espacial/fisiologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Humanos , Pessoa de Meia-Idade , Adulto JovemRESUMO
BACKGROUND: Most persons with dementia die in long term care (LTC) homes, where palliative approaches are appropriate. However, palliative approaches have not been widely implemented and there is limited understanding of staff and family experiences of dying and bereavement in this context. METHOD: This descriptive qualitative study explored family and staff experiences of end of life and end of life care for persons with dementia in LTC homes. Eighteen focus groups were conducted with 77 staff members and 19 relatives of persons with dementia at four LTC homes in four Canadian provinces. RESULTS: Three themes emerged: knowing the resident, the understanding that they are all human beings, and the long slow decline and death of residents with dementia. DISCUSSION: Intimate knowledge of the person with dementia, obtained through longstanding relationships, was foundational for person-centred end of life care. Health care aides need to be included in end of life care planning to take advantage of their knowledge of residents with dementia. There were unmet bereavement support needs among staff, particularly health care aides. Persons with dementia were affected by death around them and existing rituals for marking deaths in LTC homes may not fit their needs. Staff were uncomfortable answering relatives' questions about end of life. CONCLUSIONS: Longstanding intimate relationships enhanced end of life care but left health care aides with unmet bereavement support needs. Staff in LTC homes should be supported to answer questions about the trajectory of decline of dementia and death. Further research about residents' experiences of deaths of other residents is needed.
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Demência/terapia , Relações Interpessoais , Casas de Saúde , Cuidados Paliativos/psicologia , Assistência Terminal/psicologia , Idoso , Idoso de 80 Anos ou mais , Luto , Canadá , Cuidadores/psicologia , Demência/psicologia , Relações Familiares , Feminino , Grupos Focais , Humanos , Assistência de Longa Duração/psicologia , Masculino , Pessoa de Meia-Idade , Relações Profissional-Paciente , Pesquisa Qualitativa , Assistência Terminal/métodosRESUMO
OBJECTIVES: Although some individual and organizational contributors to person-centred care or quality of care have been studied, they have rarely been examined together. Our goal was to investigate the association of personal and organizational-environmental characteristics with self-reported person-centred behaviours in long-term residential care settings. METHOD: We asked 109 long-term care staff from two Canadian long-term care homes to complete scales assessing self-reported person-centred care, organizational support for person-centred care, beliefs about personhood in dementia, and burnout. Independent variables included four employee background characteristics (age, gender, occupation, and years of education), beliefs about personhood in dementia, burnout, and three aspects of organizational support for person-centred care (the physical environment of residents, collaboration on care, and support from management). Dependent variables included five aspects of person-centred care: autonomy, personhood, knowing the person, comfort care, and support for relationships .We used multiple linear regression analysis and changes in R(2) to test variable associations. RESULTS: Including organizational variables in regression models resulted in statistically significant (p < .05) changes in R(2) for each of the five dependent variables. Including personal variables resulted in statistically significant changes in R(2) for some dependent variables, but not others. In particular, including employee background characteristics resulted in a statistically significant change in R(2) for comfort care, and including beliefs about personhood and burnout resulted in statistically significant changes in R(2) for personhood but not for other dependent variables. CONCLUSION: Organizational characteristics are associated with several aspects of person-centred dementia care. Individual characteristics, including gender, beliefs about personhood, and burnout, appear to be more important to some aspects of person-centred dementia care (e.g., respect for personhood and comfort care) than others.
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Demência/psicologia , Enfermagem Geriátrica/métodos , Assistência de Longa Duração/métodos , Assistência Centrada no Paciente/métodos , Pessoalidade , Atitude do Pessoal de Saúde , Demência/terapia , Feminino , Pessoal de Saúde/psicologia , Instituição de Longa Permanência para Idosos , Humanos , Masculino , Pessoa de Meia-Idade , Casas de Saúde , Qualidade da Assistência à Saúde , Apoio SocialRESUMO
AIM: To study resilience among long-term care (LTC) nurses and its relationship to organisational empowerment, self-reported quality of care, perceptions of resident personhood (i.e. viewing another person as a person, implying respect) and absenteeism. BACKGROUND: Although resilience has been examined among nurses, it has not been studied in LTC nurses where resident rates of dementia are high, and nurses may experience stress affecting care and the way residents are perceived. METHOD: A sample of one hundred and thirty LTC nurses from across North America completed a series of questionnaires. RESULTS: Resilient nurses were more likely to report higher quality of care and to view residents as having higher personhood status (despite deteriorating cognitive function). Resilience was not predictive of absenteeism. Organisational empowerment did not add to the predictive power of resilience. CONCLUSIONS: Resilience is of importance in LTC nursing research and future studies could examine this construct in relation to objectively measured resident outcomes. IMPLICATIONS FOR NURSING MANAGEMENT: Our findings suggest that interventions to improve LTC staff resilience would be important to pursue and that consideration should be given to resilience in optimizing the match between potential staff members and LTC positions.
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Absenteísmo , Assistência de Longa Duração , Enfermeiras e Enfermeiros/psicologia , Cuidados de Enfermagem/normas , Poder Psicológico , Resiliência Psicológica , Adulto , Atitude do Pessoal de Saúde , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , América do Norte , Relações Enfermeiro-Paciente , Cuidados de Enfermagem/psicologia , Testes Psicológicos , Qualidade da Assistência à Saúde , Autorrelato , Inquéritos e QuestionáriosRESUMO
Nutritional care is a critical, yet often overlooked component of quality care in long-term care (LTC) that is linked to culture, socialization, and residents' psychological and physiological well-being. Given that several COVID-19 infection control protocols affected nutritional care, this study aimed to understand employees' experiences of these changes. Seven semi-structured interviews were conducted with Saskatchewan healthcare employees from several disciplines, all of whom had a role in supporting nutritional care in LTC. The resulting interview transcripts were analyzed using reflexive thematic analysis. Three main themes characterized the interviewees' reflections: regression to an institutional mealtime environment, unrealistic expectations, and concern for residents. Given the centrality of nutritional care to quality of life, strategies tailored to support staff in providing relationship-centered nutritional care must be further articulated to maintain standards of care for LTC residents in future outbreaks and epidemics.
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Resources are needed to aid healthcare providers and families in making end-of-life nutrition care decisions for residents living in long-term care settings. This scoping review aimed to explore what is reported in the literature about resources to support decision-making at the end of life in long-term care. Four databases were searched for research published from 2003 to June 2023. Articles included peer-reviewed human studies published in the English language that reported resources to support decision-making about end-of-life nutrition in long-term care settings. In total, 15 articles were included. Thematic analysis of the articles generated five themes: conversations about care, evidence-based decision-making, a need for multidisciplinary perspectives, honouring residents' goals of care, and cultural considerations for adapting resources. Multidisciplinary care teams supporting residents and their families during the end of life can benefit from resources to support discussion and facilitate decision-making.
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Tomada de Decisões , Assistência de Longa Duração , Assistência Terminal , Humanos , Apoio NutricionalRESUMO
INTRODUCTION: The United Nations Convention on the Rights of Persons with Disabilities asserts that all persons with disabilities have the right to receive the support they require to participate in decisions that affect them. Yet, persons with dementia continue to be excluded from decisions on issues that matter to them. Our planned scoping review seeks to address this gap by documenting the current knowledge on supported decision-making for persons with dementia and informing the next steps for research and practice. METHODS AND ANALYSIS: We will use Arksey and O'Malley's (2005) six-stage framework to guide our review of the English scientific literature (2005 onwards), searching the following databases: MEDLINE, PsycINFO, CINAHL, AgeLine and the Social Science Abstracts. Our review will focus on primary studies examining supported decision-making for persons with dementia, including the voices of those with dementia. Guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews, we will identify (1) domains of supported decision-making discussed in the empirical literature and (2) practices/factors that facilitate or inhibit supported decision-making. Consultations with persons with dementia and their care partners will provide insights into lived experiences, helping identify gaps between research literature and lived realities. The preliminary title and abstract search for eligible articles were conducted between August and October 2023 and updated in June 2024, yielding 56 eligible articles for review. ETHICS AND DISSEMINATION: This scoping review will be conducted following the standards of the Tri-Council Policy Statement for Ethical Conduct for Research Involving Humans (1998 with 2000, 2002 and 2005 amendments). The procedures for eliciting feedback from persons with dementia and their care partners were approved by the Office of Research Ethics Board at McGill University (Reference # 23-08-048). Dissemination of review findings to persons with dementia and care partners will occur during ongoing community consultations. Visual aids and brief lay summaries will be used to facilitate input and dialogue. Dissemination to the broader practice and research communities will include workshops conducted in collaboration with study partners and presentations and publications in peer-reviewed forums.
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Tomada de Decisões , Demência , Humanos , Demência/terapia , Projetos de Pesquisa , Pessoas com Deficiência , Participação do Paciente , Literatura de Revisão como AssuntoRESUMO
BACKGROUND: The underassessment and undertreatment of pain in residents of long-term care (LTC) facilities has been well documented. Gaps in staff knowledge and inaccurate beliefs have been identified as contributors. OBJECTIVES: To investigate the effectiveness of an expert-based continuing education program in pain assessment/management for LTC staff. METHODS: Participants included 131 LTC staff members who were randomly assigned to either an interactive pain education (PE) program, which addressed gaps in knowledge such as medication management, or an interactive control program consisting of general dementia education without a specific clinical focus. Participants attended three sessions, each lasting 3 h, and completed measures of pain-related knowledge and attitudes/beliefs before, immediately after and two weeks following the program. Focus groups were conducted with a subset of participants to gauge perception of the training program and barriers to implementing pain-related strategies. RESULTS: Analysis using ANOVA revealed that PE participants demonstrated larger gains compared with control participants with regard to pain knowledge and pain beliefs. Barriers to implementing pain-related strategies certainly exist. Nonetheless, qualitative analyses demonstrated that PE participants reported that they overcame many of these barriers and used pain management strategies four times more frequently than control participants. CONCLUSIONS: Contrary to previous research, the present study found that the interactive PE program was effective in changing pain beliefs and improving knowledge. Continuing PE in LTC has the potential to address knowledge gaps among front-line LTC providers.
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Educação Continuada/métodos , Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde/educação , Assistência de Longa Duração/métodos , Manejo da Dor/métodos , Instituições Residenciais , Adulto , Humanos , Pessoa de Meia-IdadeRESUMO
Background: Meaningful engagement has been described as active participation based on a person's interests, preferences, personhood, or perceived value. It has many benefits for persons living with dementia in long-term care (LTC) homes, including improvement in physical and cognitive function, and mental health. People with advanced dementia continue to need and benefit from inclusion and social contact in LTC, yet there is not a well-developed understanding of how to support this. A tailored intervention called Namaste Care has been shown to be an effective approach to meaningfully engage residents in LTC, decrease behavioral symptoms, and improve their comfort and quality of life. There is a need to consider how best to deliver this intervention. Objective: The aim of this study was to describe environmental, social, and sensory factors influencing meaningful engagement of persons with advanced dementia during Namaste Care implementation in LTC. Methods: In this qualitative descriptive study, focus groups and interviews were conducted with families, volunteers, staff, and managers at two LTC homes. Directed content analysis was conducted. The Comprehensive Process Model of Engagement was used as a coding framework. Results: With respect to environmental attributes, participants emphasized that a designated quiet space and a small group format were helpful for engagement. In terms of social attributes, participants emphasized Namaste Care staff capacity to deliver individualized care. Regarding sensorial factors, familiarity with the activities delivered in the program was emphasized. Conclusion: Findings reveal the need to offer small group programs that include adapted recreational and stimulating activities, such as Namaste Care, for residents at the end of life in LTC. Such programs facilitate meaningful engagement for persons with dementia as they focus on individual preferences, comfort, and inclusion while recognizing changing needs and abilities of residents.
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OBJECTIVE: To explore the experiences of the Namaste Care intervention for persons with advanced dementia (ie, moderate and late-stage) in long-term care (LTC). DESIGN: A qualitative descriptive design was used. Staff Carers (eg, personal support worker, nurse, or activity aide) delivered Namaste Care with the support of volunteers in a small group. Activities provided during the Namaste Care sessions to enhance quality of life included massages, aromatherapy, music, and snacks/beverages. SETTING AND PARTICIPANTS: Family carers of residents with advanced dementia, LTC staff, administrators, and volunteers from 2 Canadian LTC homes, located in a midsize metropolitan area, were included. METHODS: Experiences and acceptability of Namaste Care was assessed through semistructured interviews ranging from 30 to 60 minutes following the 6-month study duration period with family carers, LTC staff, administrators, and volunteers. Thematic analysis was used for interview transcripts. RESULTS: A total of 16 family carers and 21 LTC staff, administrators, and volunteers participated in the study. Namaste Care was found to be acceptable and successful in enhancing the quality of life of residents due to collaborative efforts of all group of participants. Families, volunteers, and staff noted positive responses in residents, such as smiling and laughing. The program environment supported the development of relationships within the LTC community, which included families, residents, staff, and volunteers. CONCLUSIONS AND IMPLICATIONS: Namaste Care was perceived by the LTC community as an acceptable intervention for persons with advanced dementia. It was perceived as offering multiple benefits for residents with advanced dementia such as improved communication and mood.
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OBJECTIVE: To evaluate the feasibility and effects of the Namaste Care intervention for persons with advanced dementia (ie, moderate and late-stage) in long-term care (LTC) and their family carers. DESIGN: A pre-posttest study design. Staff carers delivered Namaste Care for residents with the support of volunteers in a small group setting. Activities provided included aromatherapy, music, and snacks/beverages. SETTING AND PARTICIPANTS: Residents with advanced dementia and family carers from 2 Canadian LTC homes, located in a midsize metropolitan area, were included. METHODS: Feasibility was evaluated using a research activity log. Outcome data for residents (ie, quality of life, neuropsychiatric symptoms, pain) and family carers (ie, role stress, quality of family visits) were collected at baseline and 3 and 6 months of the intervention. Descriptive analyses and generalized estimating equations were used for quantitative data. RESULTS: A total of 53 residents with advanced dementia and 42 family carers participated in the study. Mixed findings were found for feasibility as not all intervention targets were met. There was a significant improvement in resident neuropsychiatric symptoms at the 3-month time point only (95% CI -9.39, -0.39; P = .033) and family carer role stress at both time points (3-month 95% CI -37.40, -1.80; P = .031; 6-month 95% CI -48.90, -2.09; P = .033). CONCLUSIONS AND IMPLICATIONS: Namaste Care is an intervention with preliminary evidence of impact. Feasibility findings revealed that not all targets were met as the intended number of sessions were not delivered. Future research should explore how many sessions per week are required to lead to an impact. It is important to assess outcomes for both residents and family carers, and to consider enhancing family engagement in delivering the intervention. Given the promise of this intervention, a large-scale randomized controlled trial with a longer follow-up should be conducted to further evaluate its outcomes.
Assuntos
Demência , Assistência de Longa Duração , Humanos , Qualidade de Vida , Estudos de Viabilidade , Demência/psicologia , Canadá , Cuidadores/psicologiaRESUMO
INTRODUCTION: Despite the high mortality rates in long-term care (LTC) homes, most do not have a formalised palliative programme. Hence, our research team has developed the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) programme. The goal of the proposed study is to examine the implementation and effectiveness of the SPA-LTC programme. METHODS AND ANALYSIS: A cross-jurisdictional, effectiveness-implementation type II hybrid cluster randomised control trial design will be used to assess the SPA-LTC programme for 18 LTC homes (six homes within each of three provinces). Randomisation will occur at the level of the LTC home within each province, using a 1:1 ratio (three homes in the intervention and control groups). Baseline staff surveys will take place over a 3-month period at the beginning for both the intervention and control groups. The intervention group will then receive facilitated training and education for staff, and residents and their family members will participate in the SPA-LTC programme. Postintervention data collection will be conducted in a similar manner as in the baseline period for both groups. The overall target sample size will be 594 (297 per arm, 33 resident/family member participants per home, 18 homes). Data collection and analysis will involve organisational, staff, resident and family measures. The primary outcome will be a binary measure capturing any emergency department use in the last 6 months of life (resident); with secondary outcomes including location of death (resident), satisfaction and decisional conflict (family), knowledge and confidence implementing a palliative approach (staff), along with implementation outcomes (ie, feasibility, reach, fidelity and perceived sustainability of the SPA-LTC programme). The primary outcome will be analysed via multivariable logistic regression using generalised estimating equations. Intention-to-treat principles will be used in the analysis. ETHICS AND DISSEMINATION: The study has received ethical approval. Results will be disseminated at various presentations and feedback sessions; at provincial, national and international conferences, and in a series of manuscripts that will be submitted to peer-reviewed, open access journals. TRIAL REGISTRATION NUMBER: NCT039359.