Multi-stakeholder aged care research networks: A scoping review.

BACKGROUND AND OBJECTIVES: An ageing population worldwide has highlighted the need for improved care in long term aged care homes. In Australia, such homes are called Residential Aged Care homes, and reform is underway to improve the quality and safety of aged care. A key enabler of quality improvement is increasing evidence-based practice through creating a system to support research translation. Collaborative multi-stakeholder research networks offer a potential solution by bringing together stakeholders to identify evidence-to-practice gaps, co-design research and translate knowledge into practice. The aim of this scoping review was to understand the current evidence on the creation and maintenance of multi-stakeholder aged care research networks internationally, reported facilitators and barriers, and outcomes. RESEARCH DESIGN AND METHODS: An academic literature search in five databases to identify existing multi-stakeholder aged care research networks. A grey literature search was conducted using Google, Google Scholar, grey literature databases and a manual search of targeted websites. RESULTS: 10 papers and 19 web-based resources were identified, reporting on six multi-stakeholder research networks internationally. Enabling factors of successful networks included flexibility in structure, good governance, leveraging pre-existing research relationships, consistent and open communication, staff with dual roles in research and practice, and a focus on building long term partnerships independent of research projects. DISCUSSION AND IMPLICATIONS: Collaborative multi-stakeholder research networks offer promise for improving research translation in aged care. Advancing the development of impactful multi-stakeholder aged care research networks requires internationally agreed terminology for network models, clear reporting and evaluation guidelines and dedicated infrastructure resources.

The lucidity in dementia experience: perspectives from family and professional caregivers.

BACKGROUND: Family and professional caregivers of individuals with dementia often witness care-receiver's lucidity events. OBJECTIVE: A qualitative data analysis was performed of documented family and professional caregivers' experiences and their respective appraisals of lucidity events. RESEARCH DESIGN AND METHODS: Using a reduction method of selection, data from 10 in-home family caregivers and 20 professional caregivers to long-term care residents was content-coded and analysed. Framed by a priori research questions, a summative approach to qualitative content analysis guided the interpretation of findings. RESULTS: Eight of 10 family- and 15 of 20 staff caregivers gave an example of what they believed was a witnessed lucid event; 88% of family- and 40% of staff caregivers' provided examples that appeared to fit the conceptual definition of lucidity. The emotional impact that the events had on both sets of caregivers was reported. Family caregivers' characterization of lucidity events reflected appraisals of a puzzling occurrence while staff caregivers depicted elements associated with dementia, and lucidity descriptors. The enhanced verbal communication followed by the brief, unexpected quality of lucidity, were the main elements highlighted by both sets of caregivers in their description of lucidity to others. The variability and complexity of the lucidity phenomenon and the potential challenges it poses for both sets of caregivers were characterized. Commonalities and divergences across responses were highlighted. DISCUSSION: Findings validated previous studies' results. The notions introduced by both types of caregivers were thought-provoking and borne practical, clinical, ethical, and assessment (measurement) applicability.

PIECES of My RELATIONSHIPS: The Cultural Adaptation of a Biographical Assessment Tool for Indigenous Older Adults in Canada.

BACKGROUND AND OBJECTIVES: Healthcare services are rarely designed to meet the needs of Indigenous people, resulting in culturally unsafe care and assessment tools. This paper describes a collaboration between North East Behavioural Supports Ontario (NEBSO), university researchers, and Indigenous communities to adapt a biographical assessment tool used by NEBSO to be culturally appropriate and safe for Indigenous older adults (55+) in long-term care facilities in Ontario, Canada. RESEARCH DESIGN AND METHODS: Over 36 months, this project applied an Indigenized, community-based participatory research (CBPR) and cultural safety framework to the adaptation process. Qualitative data sources include the guidance of an Indigenous Elder, an Anishinaabe Language Expert Group, and focus groups conducted along the North Shore of Lake Huron, Sudbury, and Cochrane, Ontario. RESULTS: The adapted tool shifts the focus from personhood to relationships, includes culturally relevant domains, and supports trauma-informed approaches. Five themes were identified during the adaptation process: (1) practicing a relational approach to care, (2) valuing Indigenous language, (3) understanding Indigenous trauma, (4) respecting cultural values and understandings, and (5) addressing systemic barriers to culturally safe care. DISCUSSION AND IMPLICATIONS: Themes elucidated from this research process can inform future studies adapting mainstream practice tools and developing new tools for Indigenous populations. The collaboration and approach to this adaptation process demonstrated how cultural safety at systemic and practice levels can be addressed through CPBR partnerships between universities, organizations, and Indigenous communities. Findings support the need to evaluate the cultural safety of other assessments for older Indigenous adults in health care settings.

The call-bell in residential care homes: Experiences of residents and staff.

BACKGROUND/OBJECTIVES: Call-bells are often taken-for-granted systems to heighten safety. In joint discussions among residential care home (RCH) residents, their family members, and staff, issues related to call-bell use in everyday life and work were repeatedly raised. In this article, we explore these experience-based perspectives, addressing several key questions important for call-bell use and communication. RESEARCH DESIGN/METHODS: We inductively analyzed a series of individual interviews and group discussions with 44 individuals at two units of the same Swedish RCH, conducted as part of a participatory action research project to strengthen supportive end-of-life environments. RESULTS: While the call-bell was a central part of RCH communication, we found: fragmented understanding about how the call bell functioned among all participants; many residents lacked the physical and cognitive competencies demanded for call-bell use; tensions between use of the call-bell for social/existential communication versus purely discrete tasks; and that a call-bell system assuming room-bound residents exacerbated issues related to varied response times, lack of feedback mechanisms, and pressured work situations. DISCUSSION AND IMPLICATIONS: Investigation of the call-bell system provides an empirical example of how complex relationships among stakeholders are played out in concrete situations. Tensions between different logics of care, and between clock and embodied time become evident.

Active Aging In Long-Term Care Facilities In Korea : Beyond The Lexical Meaning.

The discourse of active aging, as introduced by the WHO, aims at optimizing older adults' opportunities for health, participation, and security that could eventually enhance their social integration and quality of life. Considering that even those with frailty could strive for active aging in the given circumstances, we examined the meaning of active aging in long-term care settings and care strategies to promote it based on the WHO's framework. We conducted interviews with a total of 35 participants. The interpretative analyses revealed that the activities taken place in LTCFs have various scopes depending on older adults' physical and cognitive functional ability, and it captures the forms of activities that go beyond its lexical meaning. By defining being "active," the present findings could contribute to an understanding of how the three elements of active aging can be carried out in LTCFs.

A Short History of Long-Term Care in Nova Scotia.

The needs of older adults living in long-term care in Nova Scotia and across Canada are frequently ignored. There is historical precedent for this, as the voices of the poor and vulnerable have been under-represented throughout history. This paper aims to summarize the history of long-term care in Nova Scotia, Canada from its 17th-century origins to the end of the 20th century. The influences of key events, policies and concepts are examined chronologically: the systems implemented in Nova Scotia by French and later British colonists, the movement to delineate between categories of poor, the rise and fall of workhouses, and the development of social welfare legislation in Canada in the 20th century. Additionally, the surprisingly persistent stigmatization of poverty and dependence, and social versus health framing for older adult care, are all discussed. The authors hope that, by reflecting on the evolution of long-term care, this may result in better understanding of why contemporary problems are entrenched in our institutions. Through this understanding, tangible solutions might become more feasible.

Effectiveness of Dementia Care Mapping™ to reduce agitation in care home residents with dementia: an open-cohort cluster randomised controlled trial.

OBJECTIVES: Agitation is common and problematic in care home residents with dementia. This study investigated the (cost)effectiveness of Dementia Care Mapping™ (DCM) for reducing agitation in this population. METHOD: Pragmatic, cluster randomised controlled trial with cost-effectiveness analysis in 50 care homes, follow-up at 6 and 16 months and stratified randomisation to intervention (n = 31) and control (n = 19). Residents with dementia were recruited at baseline (n = 726) and 16 months (n = 261). Clusters were not blinded to allocation. Three DCM cycles were scheduled, delivered by two trained staff per home. Cycle one was supported by an external DCM expert. Agitation (Cohen-Mansfield Agitation Inventory (CMAI)) at 16 months was the primary outcome. RESULTS: DCM was not superior to control on any outcomes (cross-sectional sample n = 675: 287 control, 388 intervention). The adjusted mean CMAI score difference was -2.11 points (95% CI -4.66 to 0.44, p = 0.104, adjusted ICC control = 0, intervention 0.001). Sensitivity analyses supported the primary analysis. Incremental cost per unit improvement in CMAI and QALYs (intervention vs control) on closed-cohort baseline recruited sample (n = 726, 418 intervention, 308 control) was £289 and £60,627 respectively. Loss to follow-up at 16 months in the original cohort was 312/726 (43·0%) mainly (87·2%) due to deaths. Intervention dose was low with only a quarter of homes completing more than one DCM cycle. CONCLUSION: No benefits of DCM were evidenced. Low intervention dose indicates standard care homes may be insufficiently resourced to implement DCM. Alternative models of implementation, or other approaches to reducing agitation should be considered.

Unfinished Care in Residential Aged Care Facilities: An Integrative Review.

BACKGROUND AND OBJECTIVES: When workload demands are greater than available time and resources, staff members must prioritize care by degree of importance and urgency. Care tasks assigned a lower priority may be missed, rationed, or delayed; collectively referred to as "unfinished care." Residential aged care facilities (RACFs) are susceptible to unfinished care due to consumers' complex needs, workforce composition, and constraints placed on resource availability. The objectives of this integrative review were to investigate the current state of knowledge of unfinished care in RACFs and to identify knowledge gaps. RESEARCH DESIGN AND METHODS: We conducted a search of academic databases and included English-language, peer-reviewed, empirical journal articles that discussed unfinished care in RACFs. Data were synthesized using mind mapping techniques and frequency counts, resulting in two categorization frameworks. RESULTS: We identified 17 core studies and 27 informing studies (n = 44). Across core studies, 32 types of unfinished care were organized under five categories: personal care, mobility, person-centeredness, medical and health care, and general care processes. We classified 50 factors associated with unfinished care under seven categories: staff member characteristics, staff member well-being, resident characteristics, interactions, resources, the work environment, and delivery of care activities. DISCUSSION AND IMPLICATIONS: This review signifies that unfinished care in RACFs is a diverse concept in terms of types of unfinished care, associated factors, and terminology. Our findings suggest that policymakers and providers could reduce unfinished care by focusing on modifiable factors such as staffing levels. Four key knowledge gaps were identified to direct future research.

Dancing With Dementia: Exploring the Embodied Dimensions of Creativity and Social Engagement.

BACKGROUND AND OBJECTIVES: Dance is increasingly being implemented in residential long-term care to improve health and function. However, little research has explored the potential of dance to enhance social inclusion by supporting embodied self-expression, creativity, and social engagement of persons living with dementia and their families. RESEARCH DESIGN AND METHODS: This was a qualitative sequential multiphase study of Sharing Dance Seniors, a dance program that includes a suite of remotely streamed dance sessions that are delivered weekly to participants in long-term care and community settings. Our analysis focused on the participation of 67 persons living with dementia and 15 family carers in residential long-term care homes in Manitoba, Canada. Data included participant observation, video recordings, focus groups, and interviews; all data were analyzed thematically. RESULTS: We identified 2 themes: playfulness and sociability. Playfulness refers to the ways that the participants let go of what is "real" and became immersed in the narrative of a particular dance, often adding their own style. Sociability captures the ways in which the narrative approach of the Sharing Dance Seniors program encourages connectivity/intersubjectivity between participants and their community; participants co-constructed and collaboratively animated the narrative of the dances. DISCUSSION AND IMPLICATIONS: Our findings highlight the playful and imaginative nature of how persons living with dementia engage with dance and demonstrate how this has the potential to challenge the stigma associated with dementia and support social inclusion. This underscores the urgent need to make dance programs such as Sharing Dance Seniors more widely accessible to persons living with dementia everywhere.

Influence of social interaction on behavioral and psychological symptoms of dementia over 1 year among long-term care facility residents.

This study investigated the effect of social interaction including activity participation, relationships with residents, and communication with family/relatives and friends at baseline on the behavioral and psychological symptoms of dementia (BPSD) among long-term care facility residents over 1 year. This follow-up study was conducted among older adult residents with dementia or similar symptoms. Generalized linear mixed effect models were used to examine associations between social interaction and changes in the number and severity of BPSD symptoms over 1 year. Among 220 participants, rare participation in activities and poor relationships with other residents at baseline were associated with greater baseline BPSD. Less communication with family/relatives at baseline was associated with increased severity of BPSD over 1 year. Active interaction with family and relatives may prevent progression of BPSD severity among long-term care facility residents for at least 1 year.

Housing Plus Services, IADL Impairment, and Healthcare Expenditures: Evidence From the Medicare Current Beneficiaries Survey.

BACKGROUND AND OBJECTIVES: Despite enthusiasm for the potential cost savings of embedding supportive services in senior housing, few population health studies have empirically examined such associations. We investigated the extent to which associations between housing plus services in senior housing and healthcare expenditures depend upon residents' instrumental activities of daily living (IADL) impairment and the level of services available. RESEARCH DESIGN AND METHODS: We used data from 2,601 participants aged 65 or older in the 2001-2013 Medicare Current Beneficiary Survey, who reported living in senior or retirement housing. Based on survey self-reports, we created a measure of housing with different levels of services, including the categories of housing without services, housing plus services (i.e., assistance with IADLs, but not with medications), and housing plus enhanced services (i.e., assistance with IADLs including medications). Administrative and survey data were used to create measures of healthcare expenditures paid by all sources. We estimated generalized linear models based on pooled data from participants across the 13 years of data collection. RESULTS: Residents with IADL impairment-who lived in housing plus enhanced services-had lower total healthcare expenditures than their counterparts in housing without services and housing plus services. Upon examining component healthcare costs, this pattern of results was similar for inpatient/subacute care, as well as ambulatory care, but not for home health care. DISCUSSION AND IMPLICATIONS: Findings indicate the importance of studies on the cost savings of housing-based service programs to consider resident IADL status and the types of services available.

A Scoping Review: Characteristics and Outcomes of Residents Who Experience Involuntary Relocation.

BACKGROUND AND OBJECTIVES: Relocation to a residential care facility has been described as the most significant relocation affecting older adults, yet subsequent relocations, like in the case of a facility closure, have received minimal attention in the scholarly research literature. This paper reviews the published literature on involuntary relocation, focusing on the experiences of residents, families, and staff and the effects of involuntary relocation on nursing home residents' health. RESEARCH DESIGN AND METHODS: We conducted a scoping review to identify peer-reviewed studies reporting on involuntary relocation of nursing home residents. A total of 28 quantitative, qualitative, and mixed-method articles met inclusion criteria. RESULTS: Researchers mostly relied on longitudinal designs and quantitative indicators of functional health, cognitive status, psychological and emotional well-being, environment, and relocation context to examine residents' mortality risk and health outcomes associated with involuntary relocation. Inclusion of qualitative and mixed-method approaches was infrequent, as were indicators of social engagement and perceptions of relocation. Residents' awareness of and preparation for involuntary relocation positively influenced their health and well-being. Family involvement was frequently hindered by communication challenges with facilities. Staff expressed concern about residents, experienced increased workload demands, and acknowledged challenges with planning and communication. DISCUSSION AND IMPLICATIONS: Based on the collective findings, we propose a conceptual model of critical factors at play during relocation for consideration for guiding future research and developing provisions to current policies guiding relocation processes. Facilities and policymakers need to consider procedures that enhance planning efforts and decision-making among this vulnerable population and their families.

Recreational Activity in Assisted Living Communities: A Critical Review and Theoretical Model.

BACKGROUND AND OBJECTIVES: This paper critically reviewed the scientific literature on recreational activity (RA) behaviors in assisted living (AL) communities. RESEARCH DESIGN AND METHODS: A search of three databases yielded 70 quantitative, qualitative, and observational articles that met criteria for inclusion. RESULTS: AL residents participated in various types of RA, however, did so infrequently. Individual, interindividual, environmental, and relocation factors influenced RA behaviors, and participation may relate to positive consequences for residents and AL communities. This review identified multiple limitations in the literature related to construct definitions, measurement protocols, and incomplete or absent theoretical frameworks. DISCUSSION AND IMPLICATIONS: To address these limitations, the current review proposes a multivariate measurement model and an interdisciplinary theoretical model of factors relating to RA, consistent with an ecological framework. The proposed models appreciate individual psychological factors that influence the multiple facets of human choice and behavior, as well as the interaction between individuals and the unique sociophysical environment of AL. This paper concludes with recommendations for future research, emphasizing studies that have applied implications for practice and policy.

The Influence of Supportive Supervisory Practices and Health Care Aides' Self-Determination on the Provision of Person-Centered Care in Long-Term Care Facilities.

Person-centred care (PCC) is recognized as best practice in long-term care (LTC). Using a cross-sectional design, we examined the relationship between supportive supervisory practices and health care aides' (HCAs) self-determination on HCAs' perceived ability to provide PCC. A total of 131 HCAs from four LTC facilities participated in the study. There were strong, positive associations between HCAs' self-determination and their perceived ability to provide PCC, r = .59, p < .0001, and how supportive their supervisors were, r = .50, p < .0001. Mediation analysis using structural equation modeling found the direct effect of self-determination on PCC was 73% of its total effect on PCC; its indirect effect mediated through supervisory support was 27% of its total effect on PCC. Improving supportive supervisory relationships that encourage and enable HCAs' self-determination in LTC settings may be an important and effective means by which to increase the provision of PCC.

Shared Decision Making About Housing Transitions for Persons With Dementia: A Four-Case Care Network Perspective.

BACKGROUND: Persons with dementia (PWDs) and their caregivers often face difficult housing decisions, that is, decisions about their living arrangements, in which the perspectives of all members of the care network should be involved. OBJECTIVE: We performed a qualitative data analysis to assess the extent to which housing decisions for PWDs with their formal and informal caregivers correspond to an interprofessional shared decision making (IP-SDM) approach, and what light this approach sheds on their experiences with decision making. RESEARCH DESIGN AND METHODS: We used the IP-SDM model to content-code and analyze data from 4 care networks, each consisting of a PWD, 2 informal and 2 formal caregivers. RESULTS: Decision making in all networks corresponded to most IP-SDM elements, but never included all network members. Decision making was guided by the wishes of the PWD, but their actual involvement decreased over time. DISCUSSION: Results show that while the IP-SDM model was helpful, the options change with cognitive decline and moving to a nursing home can become inevitable in spite of preferences. IMPLICATIONS: Timely and honest communication helps to mitigate the distress of deciding against patient preferences, as could advance care planning about future housing transitions.

Care Home Life and Identity: A Qualitative Case Study.

BACKGROUND AND OBJECTIVES: The transition to a care home can involve multiple changes and losses that can affect an older person's well-being and identity. It is not clear how older people perceive and manage their identity within a care home over time. This study explores how living in a care home affects the identities of residents and how they address this in their daily lives. RESEARCH DESIGN AND METHODS: A multiple qualitative case study approach incorporated interview and observational data. Eighteen semistructured interviews and 260 hr of observations were conducted over 1 year with care home residents, relatives, and staff across three care homes within Greater Manchester, UK. Data were analyzed using framework analysis, drawing on the social identity perspective as an interpretive lens. RESULTS: Four themes were identified: (a) changing with age, (b) independence and autonomy, (c) bounded identity, and (d) social comparison. The impact of aging that initially altered residents' identities was exacerbated by the care home environment. Institutional restrictions jeopardized independence and autonomy, provoking residents to redefine this within the allowances of the care home. Strict routines and resource constraints of well-meaning staff resulted in the bounded expression of personalities. Consequently, to forge a positive identity, residents without dementia engaged in social comparison with residents with dementia, emphasizing their superior cognitive and physical abilities. DISCUSSION AND IMPLICATIONS: Social comparison as an adaptive strategy has previously been unidentified in care home literature. Residents need more support to express their identities, which may reduce the necessity of social comparison, and improve interrelationships and well-being.

"It Can't Happen Soon Enough." The Role of Readiness in Residential Moves by Older Parents.

My father moved from his home of 92 years to a care community in a distant location. This is the story of his move, from the perspective of a gerontologist and soon-to-be young-old daughter. I describe the events that prompted my father's decision to make the move, how I chose the care community, the transition arrangements, and the outcomes. I discuss key factors that contributed to the successful transition, all with a focus on readiness. Other factors included drawing on my knowledge as a gerontologist, using informal networks to identify a care community, visiting the care community repeatedly, and communicating openly and often with family. I briefly describe my father's quality of life after the move. I examine my experiences in the context of relevant research in gerontology, recommend how gerontologists can manage transitions to care communities for their aging parents, and offer suggestions for research.

A "recipe" for culture change? Findings from the THRIVE survey of culture change adopters.

PURPOSE OF THE STUDY: Descriptions of culture change adoption are often complex and varied, creating a challenge for those seeking guidance about which of the many components of culture change to adopt and in what order and combination. DESIGN AND METHODS: To begin to address this question, members of The Research Initiative Valuing Eldercare (THRIVE) developed and distributed an online survey to 327 known culture change adopters. Of these, 164 (50%) completed the survey. Data were analyzed to identify adopted components, co-occurrence of adopted components, and differences in these across various types of nursing home models (i.e., traditional unit, household, and small house). RESULTS: Our findings support unique co-occurrence of components across nursing home models. Results also show that homes with more traditional environments have been able to implement certain culture change components without large capital investments required by renovations. IMPLICATIONS: The adoption patterns suggest that the co-occurrence of components should be considered when pursuing organizational transformations to support culture change.