"Falling through the cracks." A case analysis of financial elder abuse and neglect using coronial evidence.

The Preventing Elder Abuse Tasmania (PEAT) research group was asked by the State Coroner to review and report on findings from the inquest into the death of a 77-year-old woman (MM) which forms the basis of this analysis. MM died of hypothermia while sleeping in a converted shipping container at her daughter and son-in-law's southern Tasmanian property. Five years later this couple were convicted of MM's manslaughter. At the subsequent inquest in 2017-2018 the public heard that MM was in the advanced stages of dementia, as well as frail and underweight at the time she died. Whereas it was significant physical neglect by her family that ultimately caused her death, the seven years of abuse to which she was subjected started with fraud, supported by a lack of legislative protections.

A COVID-19-era rapid review: using Zoom and Skype for qualitative group research.

BACKGROUND AND OBJECTIVES: How do qualitative researchers collect meaningful and representative data, and engage in action research, when constrained by cost, distance or unforeseen events? In our work investigating health and older-person services in Tasmania, we had to confront this question in the context of the coronavirus disease 2019 (COVID-19) pandemic, redesigning our methodological approach to support participant engagement in qualitative group research to meet unpredictable pandemic isolation and ethics requirements. STUDY TYPE: Rapid review. METHODS: We searched three academic databases, limited to the past 5 years, cross-referencing to identify strategies to support online qualitative group research and assess the suitability of videoconferencing (specifically through Zoom and Skype) as a tool for participant engagement in qualitative group research. RESULTS: After removing duplicates found across the three databases, 866 articles were screened by title and abstract. After manually searching citations deemed to add to our understanding of online qualitative methods, 66 articles were included in this rapid review. The review found that the strengths of videoconferencing include its cost effectiveness and ability to reach disparate populations, but that several concerns must be addressed to capture its benefits: rapport, technical issues, planning, privacy and equity. CONCLUSION: In response to the methodological challenge of engaging with participants without using routine face-to-face qualitative methods, our rapid review identified several advantages of using videoconferencing applications, such as Zoom or Skype, to facilitate research. However, to enhance data quality and the research experience for participants, consideration must be given to technical issues, planning, privacy and rapport. Underpinning these elements is consideration of equity of access.

'It feels it's wasting whatever time I've got left': A qualitative study of living with treatable but not curable cancer during the COVID-19 pandemic.

BACKGROUND: People living with cancer that is treatable but not curable have complex needs, often managing health at home, supported by those close to them. Challenges are likely to be exacerbated during the COVID-19 pandemic and the risk-reducing measures introduced in response. The impact of COVID-19 on those living with incurable, life-threatening conditions is little understood. AIM: To investigate the experiences and identify the impact of the COVID-19 pandemic for people living with treatable not curable cancer and their informal carers. DESIGN: Qualitative semi-structured phone interviews were conducted with 21 patients living with cancer that is treatable but not curable and 14 carers. SETTING/ PARTICIPANTS: Participants were part of a larger longitudinal qualitative study (ENABLE) on supported self-management for people living with cancer that is treatable but not curable. RESULTS: The COVID-19 pandemic magnified uncertainty and anxiety and led to loss of opportunities to do things important to patients in the limited time they have left to live. Lack of face-to-face contact with loved ones had a significant impact on patients' and carers' emotional wellbeing. Carers experienced increased responsibilities but less access to formal and informal support and respite. While changes to treatment led to some concern about longer-term impact on health, most patients felt well-supported by healthcare teams. CONCLUSION: The study provides rich insights into the nature of challenges, uncertainty and lost opportunities resulting from the COVID-19 pandemic for patients and carers living with cancer that is treatable but not curable, which has wider resonance for people living with other life-limiting conditions.

The Impact on Service Collaboration of Co-location of Early Childhood Services in Tasmanian Child and Family Centres: An Ethnographic Study.

INTRODUCTION: There is a global trend towards place-based initiatives (PBIs) to break the cycle of disadvantage and promote positive child development. Co-location is a common element of these initiatives and is intended to deliver more coordinated services for families of young children. This paper examines how co-locating early childhood services (ECS) from health and education in Child and Family Centres (CFCs) has impacted collaboration between services. METHODS: This ethnographic study included 130 participant observation sessions in ECS between April 2017 and December 2018 and semi-structured interviews with 45 early childhood service providers and 39 parents/carers with pre-school aged children. RESULTS: Service providers based in CFCs reported that co-location of services was facilitating local cooperation and collaboration between services. However, insufficient information sharing between services, prioritising client contact over collaborative practice and limited shared professional development remained barriers to collaborative practice. For parents, co-location improved access to services, but they experienced services independently of each other. DISCUSSION AND CONCLUSION: Co-location of ECS in CFCs contributed to greater cooperation and collaboration between services. However, for the potential of CFCs to be fully realised there remains a need for governance that better integrates service policies, systems and processes that explicitly support collaborative practice.

Childhood factors related to diverging body mass index trajectories from childhood into mid-adulthood: A mixed methods study.

Body mass index (BMI) trajectories that improve over the lifecourse result in better cardiometabolic profiles, but only a small proportion of children of an unhealthy weight show improving BMI trajectories. This study aimed to examine the childhood factors related to diverging BMI trajectories from childhood into adulthood using data from the Childhood Determinants of Adult Health study. A convergent parallel mixed methods design was used. Quantitative data (n = 2206) came from the first (2004-06) and second (2009-11) adult follow-ups of 8498 Australian children (7-15 years) assessed in 1985. Using BMI z-scores, group-based trajectory modelling identified five trajectory groups: Persistently Low, Persistently Average, High Decreasing, Average Increasing and High Increasing. Qualitative data (n = 50) were collected from a sub-group (2016; 38-46 years). Semi-structured interviews with 6-12 participants from each BMI trajectory group focused on individual, social and environmental influences on weight, diet and physical activity across the lifecourse. Log multinomial regression modelling estimated relative risks of trajectory group membership across childhood demographic, behavioural, health, parental and school factors. Qualitative data were thematically analysed using a constant comparative approach. Childhood factors influenced BMI trajectories. Paternal education, main language spoken, alcohol and self-rated health were significant quantitative childhood predictors of BMI trajectory. A distinct 'legacy effect' of parental lifestyle influences during childhood was apparent among interview participants in the Stable and High Decreasing groups, a strong and mostly positive concept discussed by both men and women in these groups and persisting despite phases of unhealthy behaviours. In contrast, the 'legacy effect' was much weaker in the two Increasing BMI groups. This study is the first to simultaneously identify important quantitative and qualitative childhood factors related to divergent BMI trajectories, and to observe a legacy effect of parents' lifestyle behaviours on divergent BMI trajectories. This work provides direction for further exploration of the factors driving divergent BMI trajectories.

Hsc70 Ameliorates the Vesicle Recycling Defects Caused by Excess α-Synuclein at Synapses.

α-Synuclein overexpression and aggregation are linked to Parkinson's disease (PD), dementia with Lewy bodies (DLB), and several other neurodegenerative disorders. In addition to effects in the cell body, α-synuclein accumulation occurs at presynapses where the protein is normally localized. While it is generally agreed that excess α-synuclein impairs synaptic vesicle trafficking, the underlying mechanisms are unknown. We show here that acute introduction of excess human α-synuclein at a classic vertebrate synapse, the lamprey reticulospinal (RS) synapse, selectively impaired the uncoating of clathrin-coated vesicles (CCVs) during synaptic vesicle recycling, leading to an increase in endocytic intermediates and a severe depletion of synaptic vesicles. Furthermore, human α-synuclein and lamprey γ-synuclein both interact in vitro with Hsc70, the chaperone protein that uncoats CCVs at synapses. After introducing excess α-synuclein, Hsc70 availability was reduced at stimulated synapses, suggesting Hsc70 sequestration as a possible mechanism underlying the synaptic vesicle trafficking defects. In support of this hypothesis, increasing the levels of exogenous Hsc70 along with α-synuclein ameliorated the CCV uncoating and vesicle recycling defects. These experiments identify a reduction in Hsc70 availability at synapses, and consequently its function, as the mechanism by which α-synuclein induces synaptic vesicle recycling defects. To our knowledge, this is the first report of a viable chaperone-based strategy for reversing the synaptic vesicle trafficking defects associated with excess α-synuclein, which may be of value for improving synaptic function in PD and other synuclein-linked diseases.

The ENABLE study protocol: Understanding and characterising the value and role of self-management support for people living with cancer that is treatable but not curable.

OBJECTIVE: Attention is turning to the needs of people living with treatable but incurable cancer, a group with complex needs, living with uncertainty over time. More research is needed to understand how this group self-manage the impact of cancer to strengthen the evidence base for interventions. This study aims to understand the value and outcomes of self-management support for people living with treatable but incurable cancer. METHODS: Qualitative longitudinal methods will examine how support needs change over time in relation to self-management and unpredictable disease trajectories. Thirty patients and 30 carers will be recruited from two hospitals, each participating in three interviews over 1 year. Patients will be purposively sampled according to age, gender, cancer type and anticipated survival. Carers will be recruited via nomination by patients but interviewed separately. One-off interviews will be conducted with 20 healthcare professionals, providing data from multiple perspectives. Based on interview findings, a modified Delphi process will map areas of consensus and disparity regarding conceptualisations and outcomes of self-management support. CONCLUSION: The key output will be practice recommendations in relation to self-management support, producing evidence to inform service innovation for those living with treatable but incurable cancer.

Reducing synuclein accumulation improves neuronal survival after spinal cord injury.

Spinal cord injury causes neuronal death, limiting subsequent regeneration and recovery. Thus, there is a need to develop strategies for improving neuronal survival after injury. Relative to our understanding of axon regeneration, comparatively little is known about the mechanisms that promote the survival of damaged neurons. To address this, we took advantage of lamprey giant reticulospinal neurons whose large size permits detailed examination of post-injury molecular responses at the level of individual, identified cells. We report here that spinal cord injury caused a select subset of giant reticulospinal neurons to accumulate synuclein, a synaptic vesicle-associated protein best known for its atypical aggregation and causal role in neurodegeneration in Parkinson's and other diseases. Post-injury synuclein accumulation took the form of punctate aggregates throughout the somata and occurred selectively in dying neurons, but not in those that survived. In contrast, another synaptic vesicle protein, synaptotagmin, did not accumulate in response to injury. We further show that the post-injury synuclein accumulation was greatly attenuated after single dose application of either the "molecular tweezer" inhibitor, CLR01, or a translation-blocking synuclein morpholino. Consequently, reduction of synuclein accumulation not only improved neuronal survival, but also increased the number of axons in the spinal cord proximal and distal to the lesion. This study is the first to reveal that reducing synuclein accumulation is a novel strategy for improving neuronal survival after spinal cord injury.

Who knows, who cares? Dementia knowledge among nurses, care workers, and family members of people living with dementia.

The number of people with dementia is increasing rapidly worldwide. Commensurate with population ageing, the use of nursing homes in Australia (known as residential aged care facilities) for individuals with dementia is growing. As a terminal condition, dementia is best managed by instituting a palliative approach to care. A good knowledge of dementia, including its progression and management, among staff and families of people living with dementia is essential for clear decision making and the provision of appropriate care. Yet there is limited information regarding relative levels of dementia knowledge. This paper reports the results of a study that assessed dementia knowledge among these two cohorts using the Dementia Knowledge Assessment Tool; the study surveyed 279 staff members and 164 family members of residents with dementia. Dementia knowledge deficits were evident in both cohorts across a range of areas. It is critical that dementia knowledge deficits are identified and addressed in order to support evidence-based dementia care.

Acute increase of α-synuclein inhibits synaptic vesicle recycling evoked during intense stimulation.

Parkinson's disease is associated with multiplication of the α-synuclein gene and abnormal accumulation of the protein. In animal models, α-synuclein overexpression broadly impairs synaptic vesicle trafficking. However, the exact steps of the vesicle trafficking pathway affected by excess α-synuclein and the underlying molecular mechanisms remain unknown. Therefore we acutely increased synuclein levels at a vertebrate synapse and performed a detailed ultrastructural analysis of the effects on presynaptic membranes. At stimulated synapses (20 Hz), excess synuclein caused a loss of synaptic vesicles and an expansion of the plasma membrane, indicating an impairment of vesicle recycling. The N-terminal domain (NTD) of synuclein, which folds into an α-helix, was sufficient to reproduce these effects. In contrast, α-synuclein mutants with a disrupted N-terminal α-helix (T6K and A30P) had little effect under identical conditions. Further supporting this model, another α-synuclein mutant (A53T) with a properly folded NTD phenocopied the synaptic vesicle recycling defects observed with wild type. Interestingly, the vesicle recycling defects were not observed when the stimulation frequency was reduced (5 Hz). Thus excess α-synuclein impairs synaptic vesicle recycling evoked during intense stimulation via a mechanism that requires a properly folded N-terminal α-helix.

Family involvement in decision making for people with dementia in residential aged care: a systematic review of quantitative literature.

AIM: Ensuring older adults' involvement in their care is accepted as good practice and is vital, particularly for people with dementia, whose care and treatment needs change considerably over the course of the illness. However, involving family members in decision making on people's behalf is still practically difficult for staff and family. The aim of this review was to identify and appraise the existing quantitative evidence about family involvement in decision making for people with dementia living in residential aged care. METHODS: The present Joanna Briggs Institute (JBI) metasynthesis assessed studies that investigated involvement of family members in decision making for people with dementia in residential aged care settings. While quantitative and qualitative studies were included in the review, this paper presents the quantitative findings. A comprehensive search of 15 electronic databases was performed. The search was limited to papers published in English, from 1990 to 2013. Twenty-six studies were identified as being relevant; 10 were quantitative, with 1 mixed method study. Two independent reviewers assessed the studies for methodological validity and extracted the data using the JBI Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI). The findings were synthesized and presented in narrative form. RESULTS: The findings related to decisions encountered and made by family surrogates, variables associated with decisions, surrogates' perceptions of, and preferences for, their roles, as well as outcomes for people with dementia and their families. CONCLUSIONS: The results identified patterns within, and variables associated with, surrogate decision making, all of which highlight the complexity and variation regarding family involvement. Attention needs to be paid to supporting family members in decision making in collaboration with staff.

A qualitative metasynthesis: family involvement in decision making for people with dementia in residential aged care.

AIM: Involving people in decisions about their care is good practice and ensures optimal outcomes. Despite considerable research, in practice family involvement in decision making can be challenging for both care staff and families. The aim of this review was to identify and appraise existing knowledge about family involvement in decision making for people with dementia living in residential aged care. METHODS: The present Joanna Briggs Institute meta-synthesis considered studies that investigate involvement of family members in decision making for people with dementia in residential aged care settings. While quantitative and qualitative studies were included in the review, this article presents the qualitative findings. A comprehensive search of studies was conducted in 15 electronic databases. The search was limited to papers published in English, from 1990 to 2013. Twenty-six studies were identified as relevant for this review; 16 were qualitative papers reporting on 15 studies. Two independent reviewers assessed the studies for methodological validity and extracted the data using the standardized Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI). The findings were synthesized using JBI-QARI. RESULTS: The findings related to the decisions encountered and made by family surrogates, family perceptions of, and preferences for, their role/s, factors regarding treatment decisions and the collaborative decision-making process, and outcomes for family decision makers. CONCLUSION: Results indicate varied and complex experiences and multiple factors influencing decision making. Communication and contacts between staff and families and the support available for families should be addressed, as well as the role of different stakeholders in decisions.

The functions of auxilin and Rab11 in Drosophila suggest that the fundamental role of ligand endocytosis in notch signaling cells is not recycling.

Notch signaling requires ligand internalization by the signal sending cells. Two endocytic proteins, epsin and auxilin, are essential for ligand internalization and signaling. Epsin promotes clathrin-coated vesicle formation, and auxilin uncoats clathrin from newly internalized vesicles. Two hypotheses have been advanced to explain the requirement for ligand endocytosis. One idea is that after ligand/receptor binding, ligand endocytosis leads to receptor activation by pulling on the receptor, which either exposes a cleavage site on the extracellular domain, or dissociates two receptor subunits. Alternatively, ligand internalization prior to receptor binding, followed by trafficking through an endosomal pathway and recycling to the plasma membrane may enable ligand activation. Activation could mean ligand modification or ligand transcytosis to a membrane environment conducive to signaling. A key piece of evidence supporting the recycling model is the requirement in signaling cells for Rab11, which encodes a GTPase critical for endosomal recycling. Here, we use Drosophila Rab11 and auxilin mutants to test the ligand recycling hypothesis. First, we find that Rab11 is dispensable for several Notch signaling events in the eye disc. Second, we find that Drosophila female germline cells, the one cell type known to signal without clathrin, also do not require auxilin to signal. Third, we find that much of the requirement for auxilin in Notch signaling was bypassed by overexpression of both clathrin heavy chain and epsin. Thus, the main role of auxilin in Notch signaling is not to produce uncoated ligand-containing vesicles, but to maintain the pool of free clathrin. Taken together, these results argue strongly that at least in some cell types, the primary function of Notch ligand endocytosis is not for ligand recycling.

Auxilin is essential for Delta signaling.

Endocytosis regulates Notch signaling in both signaling and receiving cells. A puzzling observation is that endocytosis of transmembrane ligand by the signaling cells is required for Notch activation in adjacent receiving cells. A key to understanding why signaling depends on ligand endocytosis lies in identifying and understanding the functions of crucial endocytic proteins. One such protein is Epsin, an endocytic factor first identified in vertebrate cells. Here, we show in Drosophila that Auxilin, an endocytic factor that regulates Clathrin dynamics, is also essential for Notch signaling. Auxilin, a co-factor for the ATPase Hsc70, brings Hsc70 to Clathrin cages. Hsc70/Auxilin functions in vesicle scission and also in uncoating Clathrin-coated vesicles. We find that like Epsin, Auxilin is required in Notch signaling cells for ligand internalization and signaling. Results of several experiments suggest that the crucial role of Auxilin in signaling is, at least in part, the generation of free Clathrin. We discuss these observations in the light of current models for the role of Epsin in ligand endocytosis and the role of ligand endocytosis in Notch signaling.

Drosophila klaroid encodes a SUN domain protein required for Klarsicht localization to the nuclear envelope and nuclear migration in the eye.

KASH (Klarsicht/Anc-1/Syne homology) domain proteins are cytoskeleton-associated proteins localized uniquely to the outer nuclear membrane. Klarsicht is a KASH protein required for nuclear migration in differentiating cells of the Drosophila eye. The C-terminal KASH domain of Klarsicht resides in the perinuclear space, and the cytoplasmic moiety connects to the microtubule organizing center. In C. elegans and vertebrate cells, SUN (Sad1/UNC-84) domain proteins reside in the inner nuclear membrane and tether KASH proteins to the outer nuclear membrane. Is there a Drosophila SUN protein that performs a similar function, and if so, is it like Klarsicht, obviously essential for nuclear positioning only in the eye? Here, we identify Drosophila Klaroid, a SUN protein that tethers Klarsicht. klaroid loss-of-function mutants are indistinguishable phenotypically from klarsicht mutants. Remarkably, neither gene is essential for Drosophila viability or fertility, and even in klaroid klorsicht double mutants, the only obvious external morphological defect is rough eyes. In addition, we find that klaroid and klarsicht are required for nuclear migration in differentiating neurons and in non-neural cells. Finally, while perinuclear Klaroid is ubiquitous in the eye, Klarsicht expression is limited to differentiating cells and may be part of the trigger for apical nuclear migration.