Research internationally has revealed a range of medical and health-related issues that shape care at the end of life for people living in residential aged care facilities (RACFs), their families and the staff who care for them. Yet, less is known about the lived experiences of residents, and the broader socio-cultural, emotional and relational factors that shape experiences of dying within such settings. In this article, we present findings from a scoping review designed to establish what is known about the lived experience of residents nearing the end of life. In doing so, we identify research gaps and move towards an agenda for future research. Five electronic databases were used to identify empirical research articles investigating end-of-life experiences from the perspective of older people living in RACFs, from which we selected 22 papers for thematic analysis. Our analysis highlighted three key themes: connections and closeness; place and the end of life; and temporality, care and the anticipation of dying. A majority of the articles (15) highlighted the importance of social connectedness with staff, co-residents and family in enabling people to die with dignity and a sense of belonging in residential settings. The physical layout and living arrangements in RACFs were found to affect the ways in which residents relate within the space, especially during and after the death of a resident. Anticipatory fears of dying were oriented towards the context of illness and care, and its management within the RACF, rather than death itself. Our analysis highlights considerable evidence that ‘good deaths’ are embedded in experiences of socio-emotional wellbeing, connectedness and relationality. However, much of the extant research analysed is exploratory, pointing to the need for further social scientific study of the social and cultural embeddedness of end-of-life experiences with residential aged care.

This exploratory descriptive study investigated barriers and enablers to the provision of leisure activities for people living in three Australian residential aged care facilities (RACFs) that operated under a household model of care. This research is unique in the international context, as few studies have explored the understandings and experiences of personal care attendants' (PCAs) perceptions of what impacts leisure provision for people living in RACFs. Qualitative data were collected from 17 PCAs via four focus groups. Barriers to leisure provision were identified as PCA–resident ratios, competing demands of the PCA role and a prioritisation of physical care tasks over leisure-related activities. The severity of residents' dementia (cognitive and functional deficits) as well as behavioural and psychological symptoms of dementia were also framed as barriers to participation in and the provision of leisure. Participants identified enablers of leisure provision as related to perceptions of leisure, the experiential knowledge of staff, organisational support and resourcing. The study findings suggest that enhancing leisure provision for people living with dementia will require attention to system issues (i.e. staffing levels, ratios, PCA role demands) as well as PCA knowledge and capability to facilitate person-centred leisure.

The concept of transition is often used in health and lifecourse research to understand a significant movement from one state or place to another. While people with dementia experience more major transitions than their peers, they are often excluded from transitional care research. This study set out to develop meaningful transitional supports for people with dementia and complex support needs who were undertaking a significant planned geographical transition from their current residential aged care facility to a new purpose-built facility. Using the language of complex support needs acknowledges that participants in this study have a breadth and depth of need, including cognitive, physical, psycho-social and communication impairments and social and cultural disadvantage associated with ageing, institutionalisation and social isolation. To support their move, Participatory Action Research was used to support the co-creation of transitional objects (personalised scarves and blankets) with 15 people with dementia, their families and care staff. Whilst these objects were useful in supporting transition, it was not in the way we imagined. Whilst our initial focus had been on supporting a significant geographical transition, rather it was four types of micro transitions in which the transitional objects were used: small physical transitions (from one place to another); social transitions (entering or exiting personal interactions); activity transitions (moving between activities); and time travel (moving between different times). Reimagining transitions from the perspective of people with dementia and complex support needs involves the recognition of the need for supports for micro as well as macro transitions. Personalised objects to support these everyday micro transitions have the potential to make the lives of people with dementia and complex support needs more manageable, meaningful and comprehensible. Reimagining transitions in dementia in this way helps us reimagine dementia itself, as a constantly fluid, dynamic and responsive series of moments which also has implications for the re-imagination of dementia care.

Animal therapy has been shown to have both physiological and psychological benefits for older people, including improvements in outlook and social interaction. Volunteer-led animal visitation programmes are common within residential aged care facilities in New Zealand. Visits by animals and handlers are intended to improve the quality of life of people in residential care. Very little research has been conducted on the informal animal visitation programmes typical in care facilities in New Zealand. This project examined the experience of animal therapy in two residential aged care homes that receive animal visits from an animal welfare organisation. In-depth interviews were conducted with seven older people about their experiences of the programme and analysed using narrative analysis. Three overarching narratives were identified: animal therapy as a fleeting pleasure, residential care as a sad environment, and identity outside residential care as highly valued. Older people in residential care do value animal therapy, but it is narrated as a fleeting pleasure, rather than having a long-lasting or far-reaching impact on the daily experience of residential care. In some ways, the structure of the animal therapy programme may underscore the challenges to everyday autonomy and identity experienced in residential aged care. These findings can be used to develop animal visiting programmes which recognise the importance of a valued social identity in later life.

The average expected lifespan in Canadian long-term care (LTC) homes is now less than two years post-admission, making LTC a palliative care setting. As little is known about the readiness of LTC staff in Canada to embrace a palliative care mandate, the main objective of this study was to assess qualities relevant to palliative care, including personal emotional wellbeing, palliative care self-efficacy and person-centred practices (e.g. knowing the person, comfort care). A convenience sample of 228 professional and non-professional staff (e.g. nurses and nursing assistants) across four Canadian LTC homes participated in a survey. Burnout, secondary traumatic stress and poor job satisfaction were well below accepted thresholds, e.g. burnout: mean = 20.49 (standard deviation (SD) = 5.39) for professionals; mean = 22.09 (SD = 4.98) for non-professionals; cut score = 42. Furthermore, only 0–1 per cent of each group showed a score above cut-off for any of these variables. Reported self-efficacy was moderate, e.g. efficacy in delivery: mean = 18.63 (SD = 6.29) for professionals; mean = 15.33 (SD = 7.52) for non-professionals; maximum = 32. The same was true of self-reported person-centred care, e.g. knowing the person; mean = 22.05 (SD = 6.55) for professionals; mean = 22.91 (SD = 6.16) for non-professionals; maximum = 35. t-Tests showed that non-professional staff reported relatively higher levels of burnout, while professional staff reported greater job satisfaction and self-efficacy (p < 0.05). There was no difference in secondary traumatic stress or person-centred care (p > 0.05). Overall, these results suggest that the emotional wellbeing of the Canadian LTC workforce is unlikely to impede effective palliative care. However, palliative care self-efficacy and person-centred care can be further cultivated in this context.

Background and aims: Previous research has highlighted that living in residential aged care (RAC) is associated with a range of negative outcomes for adults with acquired neurological disorders. This study sought to understand the lived experience of entering RAC for young people and their family members and characterise their needs during this process.

Method: Data included 64 written and verbal submissions to the 2015 Senate Inquiry into the Adequacy of existing residential care arrangements available for young people with severe physical, mental or intellectual disabilities in Australia. In line with hermeneutic tradition, text was analysed using thematic analysis.

Results: Entry to RAC was experienced as a complex process that coalesced around three key events: an unexpected health crisis, a directive that time's up and the individual is required to leave the healthcare setting, with a subsequent decision to move into RAC. This decision was made in the absence of time, knowledge of options or adequate support.

Conclusions: Findings suggest that there are both immediate practice changes and longer term policy responses that can support the health and disability systems to uphold the rights of people with acquired disability to choose where and how they will live their lives.

Falls prevention strategies can only be effective in reducing falls amongst older people if they are adopted and enacted in their daily lives. There is limited evidence identifying what older people in residential aged care (RAC) homes understand about falls and falls prevention, or what may limit or enable their adoption of strategies. This study was conducted in two countries and explored older people's knowledge and awareness of falls and their preferences, opportunities and motivation to undertake falls prevention strategies. A cross-sectional survey was administered to participants (N = 70) aged 65 years and over, living in six RAC homes in Perth, Australia and six RAC homes in Swansea, Wales, United Kingdom. Participants had limited knowledge about intrinsic falls risk factors and strategies to address these and frequently expressed self-blame regarding falling. Almost all (N = 67, 95.7%) participants felt highly motivated to maintain their current functional mobility and independence in everyday tasks. Key preferences for receiving falls prevention messages favoured a positive approach promoting wellness and independence (N = 41, 58.6%) via pictorial posters or brochures (N = 37, 52.9%) and small group discussions preferably with demonstrations (N = 18, 25.7%). Findings from this study may assist organisations and staff to more effectively engage with older people living in RAC about falls prevention and design targeted resources to address the motivations and preferences of this population.

This qualitative study investigated the ageing and aged care experiences in Australia of two cohorts of older survivors of genocide: Jewish Holocaust survivors and older Cambodian genocide survivors. It was carried out in response to an identified need to better train aged care workers who are in contact with these groups. In-depth interviews were conducted with 21 community-dwelling survivors aged 65 and over. Credibility was ensured by methodological triangulation and peer debriefing. The study highlighted the importance of understanding older survivors’ ageing and aged care experiences in the context of their entire lifecourse and in terms of both vulnerability and resilience. It showed that trauma history can heighten older survivors’ sensitivity to many aspects of the social and physical environments in residential, community and home-based aged care settings. The study also uncovered the potential for aged care services to help older survivors cope with the psycho-social and emotional effects of resurfacing post-traumatic stress symptoms. The implications of the study findings for care practice include the importance of recognising older survivors of genocide as a distinct group of clients and the need to distinguish staff training for caring for this client group from general cultural awareness training.

Introduction: The International Psychogeriatric Association Task Force on Mental Health Services in Long-Term Care Facilities seeks to improve care of persons in residential aged care facilities (RACFs). As part of that effort the current authors have contributed an overview and discussion of the uses of brief screening instruments in RACFs.

Methods: While no current guidelines on the use of screening instruments in nursing homes were found, relevant extant guidelines were consulted. The literature on measurement development, testing standards, psychometric considerations and the nursing home environment were consulted.

Results: Cognitive, psychiatric, behavioral, functional and omnibus screening instruments are described at a category level, along with specifics about their use in a RACF environment. Issues surrounding the selection, administration, interpretation and uses of screening instruments in RACFs are discussed. Issues of international interest (such as translation of measures) or clinical concern (e.g. impact of severe cognitive decline on assessment) are addressed. Practical points surrounding who can administer, score and interpret such screens, as well as their psychometric and clinical strengths more broadly, are articulated.

Conclusions: Guidelines for use of screening instruments in the RACF environment are offered, together with broad recommendations concerning the appropriate use of brief screening instruments in RACFs. Directions for future research and policy directions are outlined, with particular reference to the international context.