Palliative care for people with dementia living at home: a systematic review of interventions

Background: The European Association for Palliative Care White Paper defined optimal palliative care in dementia based on evidence and expert consensus. Yet, we know little on how to achieve this for people with dementia living and dying at home. Aims: To examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps. Design: A systematic review of home palliative care interventions in dementia. Data sources: The review adhered to the PRISMA guidelines and the protocol was registered with PROSPERO (CRD42018093607). We searched four electronic databases up to April 2018 (PubMed, Scopus, Cochrane library and CINAHL) and conducted lateral searches. Results: We retrieved eight relevant studies, none of which was of high quality. The evidence, albeit of generally weak quality, showed the potential benefits of the interventions in improving end-of-life care outcomes, for example, behavioural disturbances. The interventions most commonly focused on optimal symptom management, continuity of care and psychosocial support. Other European Association for Palliative Care domains identified as important in palliative care for people with dementia, for example, prognostication of dying or avoidance of burdensome interventions were under-reported. No direct evidence on facilitators and barriers to implementation was found. Conclusions: The review highlights the paucity of high-quality dementia-specific research in this area and recommends key areas for future work, for example, the need for process evaluation to identify facilitators and barriers to implementing interventions.Peer reviewedFinal Published versio

Addressing sexuality : The comfort and preparedness of occupational therapy students

Undergraduate sexual health education has the potential to increase confidence and the likelihood that healthcare professionals address sexual health in practice. This study explored Australian final year occupational therapy students’ perceptions about their education, and their preparedness and comfort to address sexuality in their final practice placements and into their future careers. An online questionnaire with three sections for (a) demographics; (b) the students' attitudes towards sexual health (SA-SH) questionnaire, which is a 22-item Likert scale about student attitudes toward sexual health issues in their future profession; and (c) nine open questions regarding students’ comfort and preparedness to address sexuality was used. The SA-SH scores of the 51 participants indicated 18 felt comfortable and well prepared; 30 felt comfortable and prepared in some situations and three participants felt uncomfortable and unprepared. Qualitative responses revealed: students considered sexuality was an important occupation; curriculum content meant they were most prepared to address sexuality with older people; personal values, gender, age, and culture factors influenced their preparedness; and comfort would increase with knowledge and experience. This paper demonstrates that both preparedness and comfort are required for occupational therapists to address sexuality effectively. The occupational therapy curriculum needs to focus on developing problem solving and practical skills using sexuality specific content, in particular how to initiate and respond when clients raise the topic. In conjunction with improvements to the curriculum, professional practice supervisors were identified as important educators as they can provide opportunities to address sexuality with clients and share their experiences while students are on placement

Addressing Sexuality: The Comfort and Preparedness of Occupational Therapy Students

Undergraduate sexual health education has the potential to increase confidence and the likelihood that healthcare professionals address sexual health in practice. This study explored Australian final year occupational therapy students’ perceptions about their education, and their preparedness and comfort to address sexuality in their final practice placements and into their future careers. An online questionnaire with three sections for (a) demographics; (b) the students\u27 attitudes towards sexual health (SA-SH) questionnaire, which is a 22-item Likert scale about student attitudes toward sexual health issues in their future profession; and (c) nine open questions regarding students’ comfort and preparedness to address sexuality was used. The SA-SH scores of the 51 participants indicated 18 felt comfortable and well prepared; 30 felt comfortable and prepared in some situations and three participants felt uncomfortable and unprepared. Qualitative responses revealed: students considered sexuality was an important occupation; curriculum content meant they were most prepared to address sexuality with older people; personal values, gender, age, and culture factors influenced their preparedness; and comfort would increase with knowledge and experience. This paper demonstrates that both preparedness and comfort are required for occupational therapists to address sexuality effectively. The occupational therapy curriculum needs to focus on developing problem solving and practical skills using sexuality specific content, in particular how to initiate and respond when clients raise the topic. In conjunction with improvements to the curriculum, professional practice supervisors were identified as important educators as they can provide opportunities to address sexuality with clients and share their experiences while students are on placement

Improving living and dying for people with advanced dementia living in care homes: a realist review of Namaste Care and other multisensory interventions

© The Author(s). 2018Background: Seventy percent of people with advanced dementia live and die in care homes. Multisensory approaches, such as Namaste Care, have been developed to improve the quality of life and dying for people with advanced dementia but little is known about effectiveness or optimum delivery. The aim of this review was to develop an explanatory account of how the Namaste Care intervention might work, on what outcomes, and in what circumstances. Methods: This is a realist review involving scoping of the literature and stakeholder interviews to develop theoretical explanations of how interventions might work, systematic searches of the evidence to test and develop the theories, and their validation with a purposive sample of stakeholders. Twenty stakeholders - user/patient representatives, dementia care providers, care home staff, researchers -took part in interviews and/or workshops. Results: We included 85 papers. Eight focused on Namaste Care and the remainder on other types of sensory interventions such as music therapy or massage. We identified three context-mechanism-outcome configurations which together provide an explanatory account of what needs to be in place for Namaste Care to work for people living with advanced dementia. This includes: providing structured access to social and physical stimulation, equipping care home staff to cope effectively with complex behaviours and variable responses, and providing a framework for person-centred care. A key overarching theme concerned the importance of activities that enabled the development of moments of connection for people with advanced dementia. Conclusions: This realist review provides a coherent account of how Namaste Care, and other multisensory interventions might work. It provides practitioners and researchers with a framework to judge the feasibility and likely success of Namaste Care in long term settings. Key for staff and residents is that the intervention triggers feelings of familiarity, reassurance, engagement and connection.Peer reviewe

Intergenerational Place-based Education: where schools, communities, & nature meet (Research Briefing - Summary Findings)

This research was commissioned by the Scottish Centre for Intergenerational Practice. The research is an exploration of the synergies (existing and possible) between intergenerational practice, formal school-linked provisions, and the field of place-focused approaches to education. The focus of the research was to consider intergenerational educational programmes that were connected to schools and at the same time, were concerned with making community-wide connections to some local, outdoor and natural places through outdoor experiences of different kinds. Thus, the key aim of the research was to consider what were the opportunities and issues for intergenerational placebased education, what its effects might be, and what the consequences are for schooling

Sexuality and ageing : A mixed methods explorative study of older adult’s experiences, attitudes, and support needs

Introduction: Sexuality contributes to health and wellbeing, but it is often overlooked as an important occupation for older adults. Older adult studies focus on decreased participation and functioning in sexual acts. This study aimed to obtain perspectives and explore understandings and experiences of sexuality and of support needs, for typically ageing adults. Method: Seventy-five older adults aged 60 years and older participated in the online cross-sectional survey. Participants were primarily from Australia, the United States, and the United Kingdom. Closed questions were analyzed using descriptive and inferential statistics, and reflexive thematic analysis was used for open questions. Results: Throughout the ageing process, older adults continued to value their sexuality, expression, desire, and identity, though meanings and participation changed. Changes and challenges were overcome through openness, exploration, curiosity, valued relationships, and adaptations to ways of doing. Older adults identified being dissatisfied with current sexual health supports, resources, and services. Conclusion: Healthcare professionals need to develop intervention knowledge to address diverse needs, and better support older adults in sexuality through open discussion, addressing psychological, social, and health concerns as part of everyday practice. The development of standardized assessments and resources with consumer collaboration will ensure resources address multifaceted components of sexuality, and older adults’ needs

Intergenerational Place-based Education: where schools, communities and nature meet

The report is an exploration of the synergies (existing and possible) between intergenerational practice, formal school-linked provisions, and the field of place-focused approaches to education. Our focus was to consider intergenerational educational programmes that were connected to schools and at the same time, were concerned with making community-wide connections to some local, outdoor and natural places through outdoor experiences of different kinds. Thus, the key aim of the research was to consider what were the opportunities and issues for intergenerational place-based education, what its effects might be, and what the consequences for other schools might look like

Using online consultations to facilitate health and social care delivery during COVID-19: an interview study of care home staff

Context: During the COVID-19 pandemic, UK care homes rapidly adopted videoconferencing to communicate with health and social care colleagues. Studies show that health and social care professionals adapted well to online consultations. Less well known are the views of care home staff on using online consultations and how it impacted their workload and responsibilities. Objective: To explore the experience of using videoconferencing for consultations during the COVID-19 pandemic from the perspective of care home staff. Method: Online interviews with care home staff [n = 13] who had facilitated videoconferencing between residents and health and social care professionals. Data were collected from June to October 2021 and analysed thematically. Findings: Experiences varied but key facilitators were having the infrastructure, training, and support for staff. Barriers were concerns about the benefits and suitability for use with older people living with dementia and/or frailty. Care home staff discussed new ways of working and undertaking new tasks. Consequently, staff developed new skills and confidence in using the technology. However, considerable time was needed to schedule, prepare, and facilitate consultations. Videoconferencing had the potential to support staff and strengthen working relationships with external professionals. Limitations: This is a small study with 13 participants from 11 care homes. It complements professional accounts of videoconferencing privileging the care home view. Implications: Fewer face-to-face meetings are anticipated to discuss residents’ care with visiting professionals. We need to address care home IT infrastructure and implicit expectations that care home staff can assimilate these changes amidst staffing shortages. A better understanding is needed about how to support care home staff in these roles, how this changes interdisciplinary working, and effects on residents’ care

Experience of recently graduated occupational therapists in addressing sexuality with their clients

Health care consumers have emphasised the importance of being able to express themselves in a sexual nature, regardless of their health conditions. Unfortunately, literature based on experienced occupational therapists and students, indicates sexuality is poorly addressed, despite being a meaningful occupation. There is limited literature based on Australian experiences or the experiences of recent graduates, therefore this study aimed to explore how comfortable and prepared 11 recent graduates who studied in Australia, were in addressing sexuality, as well as the enablers and challenges experienced. A qualitative research design was utilized, with results demonstrating that undergraduate curricula are not adequately preparing new graduates to feel equipped with the knowledge, skills, comfort and preparedness to address sexuality. Enablers such as education, professional development and supportive workplaces, can aid to facilitate positive change in this area of practice, which may improve client outcomes

Using non-participant observation to uncover mechanisms: insights from a realist evaluation

This article outlines how a realist evaluation of dementia care in hospitals used non-participant observation to support the refinement and testing of mechanisms likely to lead to the use of person-centred care. We found that comments and explanations of their actions from hospital staff during observation periods provided insights into the reasoning that generated their actions for care in real time. This informed subsequent data collection and analysis. Two worked examples of mechanisms first identified during non-participant observation demonstrate (1) how they were uncovered, and (2) how this informed research activities for theory refinement. Early, iterative engagement with the analytic process, primarily involving reflection and debate with the research team, maximised the potential of observation data to support surfacing underlying mechanisms, linking them to specific contexts and outcomes.Peer reviewedFinal Accepted Versio