Capturing the ghost in the machine: a process for development and validation of measures of phenomenal consciousness in delirium.

BACKGROUND: Delirium has conventionally been considered a disorder of consciousness. Alertness and arousal are used as surrogates in clinical practice but are insufficient for the purposes of a more dimensional assessment of consciousness. We present a process of development and validation of candidate measures of phenomenal consciousness that could be applied to the diagnosis of delirium. METHODS: First, a narrative review of available instruments in the fields of phenomenal consciousness, including prereflective consciousness, the phenomenal-sensed experience and reflective thought, was undertaken. Eligibility of tools in the context of applicability to delirium was based upon objectivity in test interpretation and the requirement for tester administration. Second, where there was a gap in suitable cognitive tools, new items were derived using the silent generation technique. A process of face and construct validity using a diverse panel of experts was performed, and readability was evaluated. RESULTS: 814 articles were screened from the literature review. Fourteen candidate tools were reported from the three domains of phenomenal consciousness. One of these met the eligibility criteria for a delirium assessment. Fifty-seven new tests of phenomenal consciousness were identified. After a process of item reduction, a total of 26 individual tests were identified. After content validity, 22 of the 26 items were retained. The scale average content validity index was 0.89. The agreement between raters was between 80% and 97%. 100% of responses for face validity were rated as positive. Flesch Reading Ease Score was 91.6 (very easy to read). CONCLUSIONS: Candidate measures of phenomenal consciousness are described, and early validity studies are promising.

Hippocampal resting-state connectivity is associated with posterior-cortical cognitive impairment in Parkinson's disease.

AIM: Frontal and posterior-cortical cognitive subtypes in Parkinson's disease (PD) present with executive/attention and memory/visuospatial deficits, respectively. As the posterior-cortical subtype is predicted to progress rapidly toward dementia, the present study aimed to explore biological markers of this group using resting-state functional magnetic resonance imaging (rs-fMRI). METHODS: K-means cluster analysis delineated subtypes (cognitively intact, frontal, posterior-cortical, and globally impaired) among 85 people with PD. A subset of PD participants (N = 42) and 20 healthy controls (HCs) underwent rs-fMRI. Connectivity of bilateral hippocampi with regions of interest was compared between posterior-cortical, cognitively intact, and HC participants using seed-based analysis, controlling for age. Exploratory correlations were performed between areas of interest from the group analysis and a series of cognitive tests. RESULTS: The posterior-cortical subtype (N = 19) showed weaker connectivity between the left hippocampus and right anterior temporal fusiform cortex compared to the cognitively intact (N = 11) group, p-false discovery rate (FDR) = .01, and weaker connectivity between bilateral hippocampi and most fusiform regions compared to HCs (N = 20). No differences were found between HCs and cognitively intact PD. Exploratory analyses revealed strongest associations between connectivity of the right anterior temporal fusiform cortex and left hippocampus with category fluency (p-FDR = .01). CONCLUSION: Results suggest that weakened connectivity between the hippocampus and fusiform region is a unique characteristic of posterior-cortical cognitive deficits in PD. Further exploration of hippocampal and fusiform functional integrity as a marker of cognitive decline in PD is warranted.

Telehealth Cognitive Behavior Therapy to Reduce Anxiety in People Living with Cognitive Impairment: A Randomized Feasibility Pilot Study.

OBJECTIVES: To evaluate the feasibility of telehealth-based cognitive behavior therapy for people living with cognitive impairment experiencing anxiety (Tele-CBT), and to assess whether this leads to improvements in anxiety, depression, and quality of life post-intervention. METHODS: This was a single-blind randomized feasibility pilot trial of the Tele-CBT versus usual care. People living with mild cognitive impairment or dementia experiencing anxiety were recruited and randomized to receive Tele-CBT (n = 5) or continue usual care (n = 5). Feasibility data comprised recruitment uptake and retention, adherence, and ease of use. Outcomes of anxiety (primary outcome - Rating Anxiety in Dementia; RAID), depression, stress, and quality of life were measured pre- and post-intervention. RESULTS: Intervention feasibility was demonstrated through minimal attrition, acceptability, and ease of use via videoconferencing. Both groups showed a decrease of anxiety symptoms (RAID) from baseline to post-assessment. CONCLUSIONS: The Tele-CBT program was acceptable to use via videoconferencing. Reduced anxiety symptoms were observed in both groups at post-. An RCT with a larger sample is required to determine the efficacy and implementation of the intervention. CLINICAL IMPLICATIONS: This study indicates the feasibility of videoconference CBT to address anxiety experienced by people living with cognitive impairment with minimal assistance from support persons.

Face and content validity of a mobile delirium screening tool adapted for use in the medical setting (eDIS-MED): Welcome to the machine.

OBJECTIVES: Following a user-centred redesign and refinement process of an electronic delirium screening tool (eDIS-MED), further accuracy assessment was performed prior to anticipated testing in the clinical setting. METHODS: Content validity of each of the existing questions was evaluated by an expert group in the domains of clarity, relevance and importance. Questions with a Content Validity Index (CVI) <0.80 were reviewed by the development group for potential revision. Items with CVI <0.70 were discarded. Next, face validity of the entirety of the tests was conducted and readability measured. RESULTS: A panel of five clinical experts evaluated the test battery comprising eDIS-MED. The content validity process endorsed 61 items. The overall scale CVI was 0.92. Eighty-eight per cent of the responses with regard to question relevancy, usefulness and appropriateness were positive. The questions were deemed fifth grade level and very easy to read. CONCLUSIONS: A revised electronic screening tool was shown to be accurate according to an expert group. A clinical validation study is planned.

Prototype development of the Mental Health benchmarking Industry Tool for residential aged Care (MHICare Tool): a protocol paper of a two-stage sequential and mixed methods codesign study.

OBJECTIVES: Current mental health practices for people living in residential aged care (RAC) facilities are poor. In Australia, there are no mechanisms to monitor and promote mental health for people living in RAC, including those who experience changed behaviours and psychological symptoms. The aim of this study is to improve current practices and mental health outcomes for people living in RAC facilities by codesigning a Mental Health benchmarking Industry Tool for residential aged Care (MHICare Tool). METHODS: A two-stage sequential and mixed methods codesign methodology will be used. Stage 1 will include qualitative interviews and focus groups to engage with residents, family/care partners and RAC staff to ascertain mental healthcare practices and outcomes of greatest significance to them. Adapted concept mapping methods will be used to rank identified issues of concern in order of importance and changeability, and to generate draft quality indicators. Stage 2 will comprise a Delphi procedure to gain the wider consensus of expert panel views (aged care industry, academic, clinical) on the performance indicators to be included, resulting in the codesigned MHICare Tool. ETHICS AND DISSEMINATION: This study has been reviewed and approved by the University of Queensland Human Research Ethics Committee (HREC/2019002096). This project will be carried out according to the National Statement on Ethical Conduct in Human Research (2007). The study's findings will be published in peer-reviewed journals and disseminated at national and international conferences and through social media. CONCLUSION: This protocol reports structured methods to codesign and develop a mental health performance indicator tool for use in Australian RAC.

Feasibility and Acceptability of a Videoconferencing CBT Intervention for Anxiety in People with Parkinson's Disease.

OBJECTIVES: In people with Parkinson's disease (PwPD), non-motor symptoms such as anxiety are common and have negative impacts on their quality of life. There are currently few interventions that address anxiety in PwPD, and access to diagnosis and treatment is often limited for those living in rural areas. The aim of this study was to evaluate the feasibility and acceptability of a telehealth videoconferencing CBT intervention for anxiety in PwPD. METHODS: A pre- and post-test feasibility study (N = 10) was conducted and evaluated utilizing the RE-AIM framework (Reach, Effectiveness, Adoption, Implementation, and Maintenance). RESULTS: Lack of access to the internet and videoconferencing technology were identified as barriers to participation. Physical health issues also impacted recruitment and retention. Non-completers were significantly older and less likely to have a carer involved in the intervention. Clinician adoption of the intervention was low while participant acceptability of videoconferencing technology varied and required carer support. CONCLUSIONS: Providing access to technology and support to overcome technological issues, as well as telehealth training for clinicians, are recommended in future studies to improve recruitment, retention, and implementation. CLINICAL IMPLICATIONS: Identification of barriers and facilitators provides future studies with the knowledge to tailorize their program to better suit PwPD.

Anxiety Symptoms in Australian Memory Clinic Attendees with Cognitive Impairment: Differences Between Self-, Carer-, and Clinician-Report Measures.

OBJECTIVES: To identify the prevalence of anxiety symptoms using a variety of instruments in an Australian memory clinic sample. METHODS: This is an exploratory cross-sectional study using a purposive consecutive series sample of 163 individuals and their carers who attended a Brisbane, Australia, memory clinic in 2012-2015. Descriptive statistics and correlation analyses were performed to explore different approaches to measuring anxiety in the sample, using clinician-rated, self-report and carer-report measures. RESULTS: The mean age of participants was 78 years, nearly 53% were females. Over 70% of participants with mild cognitive impairment (MCI) and dementia (n = 163) experienced mild to moderate anxiety per a clinician-rated measure (HAM-A), which moderately correlated with carer-report anxiety (IQAD; rs =.59, p < .001). Only weak correlations of these measures with self-report anxiety (GAI) were detected. CONCLUSIONS: Mild to moderate anxiety symptoms were frequent in memory clinic attendees diagnosed with MCI or dementia using the HAM-A, suggesting experiences of subclinical anxiety symptoms. CLINICAL IMPLICATIONS: Self- as well as carer-report screening tools should be used in memory clinics in addition to routinely administered neuropsychiatric assessments to support early identification of anxiety symptoms and mapping of available post-diagnostic care pathways for people diagnosed with cognitive impairment.

A narrative review of the development and performance characteristics of electronic delirium-screening tools.

BACKGROUND: Electronic delirium-screening tools are an emergent area of research. OBJECTIVE: The objective of this study was to summarise the development and performance characteristics of electronic screening tools in delirium. METHODS: Searches were conducted in Pubmed, Embase, and CINAHL Complete databases to identify electronic delirium-screening tools. RESULTS: Five electronic delirium-screening tools were identified and reviewed. Two were designed for and tested within a medical setting, and three were applied to intensive care. Adaptive design features, such as skip function to reduce test burden, were variably integrated into instrument design. All tools were shown to have acceptable psychometric properties, but validation studies were largely incomplete. CONCLUSIONS: Electronic delirium-screening tools are an exciting area of development and may offer hope for improved uptake of delirium screening.

Levetiracetam for the treatment of mild cognitive impairment in Parkinson's disease: a double-blind controlled proof-of-concept trial protocol.

BACKGROUND: Mild memory impairment, termed amnestic mild cognitive impairment (aMCI), is associated with rapid progression towards dementia in Parkinson's disease (PD). Studies have shown hyperactivation of hippocampal DG/CA3 subfields during an episodic memory task as a biomarker of aMCI related to Alzheimer's disease. This project investigates the feasibility of a trial to establish the efficacy of a repurposed antiepileptic drug, levetiracetam, in low doses as a putative treatment to target DG/CA3 hyperactivation and improve episodic memory deficits in aMCI in PD. Based on previous work, it is hypothesized that levetiracetam will normalize DG/CA3 overactivation in PD-aMCI participants and improve memory performance. METHODS: Twenty-eight PD-aMCI participants, 28 PD participants without memory impairment (PD-nMI), and 28 healthy controls will be recruited. PD-aMCI participants will undertake a 12-week randomized, placebo-controlled, double-blind cross-over trial with a 14-day treatment of 125 mg levetiracetam or placebo twice daily, separated by a 4-week washout period. After each treatment period, participants will complete an episodic memory task designed to tax hippocampal subregion-specific function during high-resolution functional magnetic resonance imaging (fMRI). PD-nMI and healthy controls will undergo the fMRI protocol only, to compare baseline DG/CA3 subfield activity. RESULTS: Episodic memory task performance and functional activation in the DG/CA3 subfield during the fMRI task will be primary outcome measures. Global cognition, PD severity, and adverse events will be measured as secondary outcomes. Recruitment, eligibility, and study completion rates will be explored as feasibility outcomes. CONCLUSIONS: This study, the first of its kind, will establish hippocampal subregion functional impairment and proof of concept of levetiracetam as an early therapeutic option to reduce dementia risk in PD. TRIAL REGISTRATION: ClinicalTrials.gov, NCT04643327 . Registered on 25 November 2020.

Optimising verbal fluency analysis in neurological patients with dysarthria: examples from Parkinson's disease and hereditary ataxia.

BACKGROUND: Verbal fluency tests (VFTs) are widely used to assess cognitive-linguistic performance in neurological diseases. However, the influence of dysarthria on performance in tests requiring oral responses is unclear in ataxia and Parkinson's disease. OBJECTIVES: To determine the impact of dysarthria on VFT performance and evaluate the validity and reliability of alternative methods for analyzing VFT data. METHOD: Trained raters evaluated dysarthria using VFT recordings in people with ataxia (N = 61) or Parkinson's disease (PD; N = 69). Total Correct Items scores and qualitative parameters (intrusions, ambiguous verbalizations, perseverations, and interjections) were compared across semantic, phonemic, and alternating fluency tasks. Disease severity was considered as a covariate in the regression model. RESULTS: VFT dysarthria ratings correlated with the benchmark (ground truth) dysarthria scores derived from a monologue. Ambiguous responses resulting from unclear speech impeded the rater's ability to determine if a response was correct. Regression analysis indicated that more severe dysarthria ratings predicted diminished scores in all three tasks (semantic fluency, phonemic fluency and alternating fluency) in the ataxia group. The contribution of disease severity to semantic, phonemic and alternating fluency was reduced substantially in the ataxia group after accounting for dysarthria severity in the model in both groups. CONCLUSIONS: Dysarthria severity can be estimated based on speech samples derived from VFT. Dysarthria can lead to lower total correct items and is associated with more ambiguous verbalizations in VFT. Dysarthria severity should be considered when interpreting VFT performance in common movement disorders.

Longitudinal follow up of data-driven cognitive subtypes in Parkinson's disease.

AIM: The dual syndrome hypothesis proposes that there are two cognitive subtypes in Parkinson's disease (PD): a frontal subtype with executive/attention impairment and gradual cognitive decline, and a posterior-cortical subtype with memory/visuospatial deficits and rapid cognitive decline. We aimed to compare the rate of global cognitive decline between subtypes derived using data-driven methods and explore their longitudinal performance within specific cognitive domains to better understand the prognosis of each subtype. METHOD: Frontal, posterior-cortical, globally impaired, and cognitively intact PD subtypes were identified at baseline using k-means clustering (N = 85), and 29 participants (34%) returned for follow-up assessments on average 4.87 years from baseline. Linear mixed effects models compared progression of subtypes on global cognition; psychological symptoms; parkinsonism; and the memory, attention, executive, language, and visuospatial cognitive domains. RESULTS: The frontal subtype was lost to attrition. While rate of change in parkinsonism, anxiety, and apathy differed between subtypes, there was no difference in the rate of global cognitive decline. However, the posterior-cortical subtype declined most rapidly in verbal memory, card sorting, trail making, and judgement of line orientation (JLO), while the cognitively intact group declined most rapidly on verbal memory and semantic fluency. The globally impaired subtype declined most rapidly in JLO, although this should be interpreted with caution due to high attrition. CONCLUSION: Despite limited sample size, the present study supports the differential progression of the posterior-cortical subtype compared to cognitively intact and globally impaired PD. These results encourage further, large-scale longitudinal investigations of cognitive subtypes in PD.

A single-blind, parallel-group randomised trial of a Technology-assisted and remotely delivered Cognitive Behavioural Therapy intervention (Tech-CBT) versus usual care to reduce anxiety in people with mild cognitive impairment and dementia: study protocol for a randomised trial.

BACKGROUND: Anxiety is commonly experienced by people living with mild cognitive impairment (MCI) and dementia. Whilst there is strong evidence for late-life anxiety treatment using cognitive behavioural therapy (CBT) and delivery via telehealth, there is little evidence for the remote delivery of psychological treatment for anxiety in people living with MCI and dementia. This paper reports the protocol for the Tech-CBT study which aims to investigate the efficacy, cost-effectiveness, usability and acceptability of a technology-assisted and remotely delivered CBT intervention to enhance delivery of anxiety treatment for people living with MCI and dementia of any aetiology. METHODS: A hybrid II single-blind, parallel-group randomised trial of a Tech-CBT intervention (n = 35) versus usual care (n = 35), with in-built mixed methods process and economic evaluations to inform future scale-up and implementation into clinical practice. The intervention (i) consists of six weekly sessions delivered by postgraduate psychology trainees via telehealth video-conferencing, (ii) incorporates voice assistant app technology for home-based practice, and (iii) utilises a purpose-built digital platform, My Anxiety Care. The primary outcome is change in anxiety as measured by the Rating Anxiety in Dementia scale. Secondary outcomes include change in quality of life and depression, and outcomes for carers. The process evaluation will be guided by evaluation frameworks. Qualitative interviews will be conducted with a purposive sample of participants (n = 10) and carers (n = 10), to evaluate acceptability and feasibility, as well as factors influencing participation and adherence. Interviews will also be conducted with therapists (n = 18) and wider stakeholders (n = 18), to explore contextual factors and barriers/facilitators to future implementation and scalability. A cost-utility analysis will be undertaken to determine the cost-effectiveness of Tech-CBT compared to usual care. DISCUSSION: This is the first trial to evaluate a novel technology-assisted CBT intervention to reduce anxiety in people living with MCI and dementia. Other potential benefits include improved quality of life for people with cognitive impairment and their care partners, improved access to psychological treatment regardless of geographical location, and upskilling of the psychological workforce in anxiety treatment for people living with MCI and dementia. TRIAL REGISTRATION: This trial has been prospectively registered with ClinicalTrials.gov: NCT05528302 [September 2, 2022].

Global assessment, cognitive profile, and characteristics of mild cognitive impairment in Parkinson's disease.

BACKGROUND: Cognitive deficits are evident throughout the course of Parkinson's disease (PD), with 24% of patients experiencing subtle cognitive disturbances at the time of diagnosis, and with up to 80% of patients developing PD dementia (PDD) at advanced stages of the disease PD patients with mild cognitive impairment (MCI), an at-risk phenotype of PDD, present with heterogeneous clinical characteristics that complicate the management of PD. OBJECTIVES: This study aims to examine the characteristics of PD-MCI by using the Movement Disorder Society (MDS) diagnostic criteria and evaluate the validity of global cognitive scales in identifying PD-MCI. METHODS: Seventy-nine (79) PD patients completed neuropsychological assessments and a comprehensive cognitive battery. PD-MCI was classified according to the level 2 MDS task force criteria. Mini-Mental State Examination (sMMSE), Montreal Cognitive Assessment (MoCA) and Parkinson's Disease Cognitive Rating Scale (PDCRS) were examined against a level 2 dichotomised PD-MCI diagnosis. Characteristics of PD-MCI were evaluated using logistic regression analysis. RESULTS: Twenty-seven patients met criteria for PD-MCI (34%). The MoCA and PDCRS demonstrated high validity to screen for PD-MCI. Impairments in multiple cognitive domains were observed in 77.8% of PD-MCI patients. There were significantly more males in the PD-MCI group compared to PD patients without MCI (p < 0.01). CONCLUSIONS: PD patients with MCI exhibited impairments in the attention/working memory, executive function and memory domains. Heterogeneous cognitive characteristics in PD warrant further investigation into specific cognitive subtypes to advance understanding and effective evaluation of PD-MCI.

Barriers and enablers for the implementation of trauma-informed care in healthcare settings: a systematic review.

BACKGROUND: Healthcare services can be re-traumatising for trauma survivors where they trigger memories of past distressing events and exert limits to a survivor's sense of autonomy, choice, and control. The benefits of receiving trauma-informed healthcare are well established; however, factors that promote or impede the implementation of trauma-informed care are not yet well characterised and understood. The aim of this review was to systematically identify and synthesise evidence regarding factors that promote or reduce the implementation of TIC in healthcare settings. METHODS: This systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) 2.0 guidelines. Scopus, MEDLINE, Proquest, PsycINFO and grey literature were searched for original research or evaluations published between January 2000 and April 2021 reporting barriers and/or facilitating factors for the implementation of trauma-informed care in a healthcare setting. Two reviewers independently assessed the quality of each included study using the Mixed Methods Appraisal Tool (MMAT) Checklist. RESULTS: Twenty-seven studies were included, 22 of which were published in the USA. Implementation occurred in a range of health settings, predominantly mental health services. The barriers and facilitators of implementing trauma-informed care were categorised as follows: intervention characteristics (perceived relevance of trauma-informed care to the health setting and target population), influences external to the organisation (e.g. interagency collaboration or the actions of other agencies) and influences within the organisation in which implementation occurred (e.g. leadership engagement, financial and staffing resources and policy and procedure changes that promote flexibility in protocols). Other factors related to the implementation processes (e.g. flexible and accessible training, service user feedback and the collection and review of initiative outcomes) and finally the characteristics of individuals within the service or system such as a resistance to change. CONCLUSIONS: This review identifies key factors that should be targeted to promote trauma-informed care implementation. Continued research will be helpful for characterising what trauma-informed care looks like when it is delivered well, and providing validated frameworks to promote organisational uptake for the benefit of trauma survivors. REGISTRATION: The protocol for this review was registered on the PROSPERO database (CRD42021242891).

The Use of Balanced Scorecards in Mental Health Services: an Integrative Review and Thematic Analysis.

Performance management of mental health services (MHS) through quality reporting of strategic indicators and goals is essential to improve efficiency and quality of care. One such method is the balanced scorecard (BSC). This integrative review of peer-reviewed and industry implemented BSCs in MHS aims to inform future development of a more comprehensive mental health-focused benchmarking tool. A two-part systematic literature search consisted of peer-reviewed published literature on MHS specific BSCs utilising the PRISMA guidelines in addition to industry published BSCs available online. A total of 17 unique BSCs were identified. A total of 434 indicators were subject to thematic analysis identifying 11 key themes: prevalence, accessibility, services provided, clinical outcomes, client satisfaction, client involvement, staff motivation, staffing levels, governance and compliance, development, and costs and revenue. These themes represented the measures that MHS believed measured key performance criteria in alignment with their organisational objectives.

A Pilot Study of Telehealth Mindfulness-Based Cognitive Therapy for Depression in Parkinson's Disease.

Introduction: Parkinson's disease (PD) is characterized by high-rates of depression with limited evidence-based treatment options to improve mood. Objective: To expand therapeutic options, we evaluated the feasibility and effect of a telehealth mindfulness-based cognitive therapy intervention adapted for PD (MBCT-PD) in a sample of participants with DSM-5 depressive disorders. Methods: Fifteen participants with PD and clinically-significant depression completed 9 sessions of MBCT-PD. Depression, anxiety, and quality of life were evaluated at baseline, endpoint, and 1-month follow-up. Results: Telehealth MBCT-PD was feasible and beneficial. Completion rates exceeded 85% and treatment satisfaction rates were high. Notable improvements were observed for depression, anxiety, and quality of life over the course of the trial. Conclusion: Telehealth MBCT-PD shows promise and warrants further evaluation via randomized clinical trial with more diverse participants. Such research holds the potential to expand the range of therapeutic options for depression in PD, thereby setting the stage for personalized care.

How Effective are Pictures in Eliciting Information from People Living with Dementia? A Systematic Review.

OBJECTIVES: Decline in language and cognitive functioning often deprives people living with moderate-to-severe dementia of self-reporting their quality of life (QoL) on the written and verbal formats of questionnaires. This systematic review aimed to evaluate the effectiveness of pictorial tools as an alternative method for enabling people living with dementia to self-report their QoL. METHODS: PubMed, PsycINFO, CINAHL, and EMBASE were searched. Primary research studies reporting on information elicitation from people living with dementia through pictures were deemed eligible. Six studies satisfied the inclusion criteria. Methodological quality of the studies was evaluated through Downs and Black checklist. Data was extracted according to population, intervention, comparator, and outcomes (PICO) and results were summarized and supplemented by narrative synthesis. RESULTS: Compared to usual communication methods, pictorial tools were found to have a superior effect on comprehension of conversations and decision-making abilities, minimal effect on preference consistency, and an undeterminable effect on discourse features. CONCLUSIONS: There is consistent evidence that pictures enhance comprehension and might facilitate decision-making abilities. CLINICAL IMPLICATIONS: QoL information can be elicited more effectively through pictorial tools. Future studies warrant development of pictorial versions of standardized QoL tools which will assist the inclusion of people living with severe dementia.

Frequency of changed behaviours in residential aged care and common mitigation strategies - A retrospective review of behavioural report logs.

BACKGROUND: Changed behaviours in residential aged care facilities (RACF) are frequently reported in the literature. How RACF staff routinely respond to these observed changed behaviours represents a significant gap. OBJECTIVE: To analyse the frequency of changed behaviour reported within RACF behavioural report logs and to ascertain how staff typically manage these behaviours. METHODS: Residents (N = 25) with varying levels of cognitive function were recruited from a 160 bed RACF in Queensland, Australia. A retrospective analysis of behavioural report logs was conducted to elucidate prevalence of reported changed behaviours as categorised by RACF staff. Thematic analysis of staff recorded behavioural mitigation strategies was used to categorise staff actions. A case analysis was also conducted to highlight the challenges faced by RACF staff managing persistent acute changed behaviours using identified common mitigation strategies. The STROBE guidelines were followed for reporting. RESULTS: There were 395 behaviours recorded in a two-month period. Physical agitation, interfering while wandering, trying to get to inappropriate places, verbal refusal of care, physical aggression, and verbal disruption were most frequently reported by staff. Management strategies included redirection, PRN psychotropic medication, reassurance, routine care practices, offering of beverages, repositioning, and rarely analgesia. A 24-h case analysis highlighted how staff utilised redirection and multiple doses of a PRN benzodiazepine with limited effectiveness. CONCLUSION: This study reveals current mitigation strategies employed by RACF staff in response to acute changed behaviours often associated with dementia. Agitation and wandering are prevalent and are difficult for staff to manage effectively. RELEVANCE TO CLINICAL PRACTICE: This study highlights that careful consideration should be taken to avoid overuse of PRN benzodiazepines in management of changed behaviours. Short-term mitigation strategies, such as redirection, may not be effective if underlying causes such as pain, physiological, mental, emotional, or social needs are not met. PATIENT AND PUBLIC CONTRIBUTION: A RACF participated in project design and review.

Measurable outcomes of consumer engagement in health research: A scoping review.

Background: Consumer engagement is increasingly recognized as an instrumental component of health research, with many institutions and international bodies mandating it as part of the research and funding process. Given an increasing utilization of consumer engagement in health research, it is critical to identify the literature which support its value and tools that capture successful outcomes. To develop an overview of the literature, we conducted an umbrella scoping review exploring important outcomes of consumer engagement in health research combined with a scoping review of relevant frameworks. Specifically, we aimed to capture outcomes which reflect authentic and meaningful consumer engagement. Methods: Four databases (PubMed, Embase, CINAHL and Cochrane Library) were searched using key search terms. Records were included if they were review articles or frameworks that addressed outcomes of consumer engagement in health research. Data was analyzed using descriptive statistics and an inductive qualitative content analysis. Identified outcomes were sorted based on the three most relevant stakeholder groups (consumer, researcher, institution). Results: A total of twenty articles that explored a variety of health disciplines were included. We identified fifteen measurable outcomes of consumer engagement in health research. Eight core outcomes were relevant to all stakeholder groups, and were considered fundamental to authentic consumer engagement including (1) trust, (2) empowerment, (3) respect, (4) confidence in the outcomes of the research, (5) transparency of the research process, (6) satisfaction with the consumer engagement program, (7) knowledge and experiences of consumers, and (8) degree of consumer engagement. Outcomes pertaining to specific stakeholder groups included representativeness and diversity of the consumer groups, research relevance to consumers, funding opportunities, quality/validity of the research, recruitment/retention rates, translation and dissemination of research, and interpretation of results. Conclusion: This review identified key measurable outcomes that could be captured when evaluating the impacts of consumer engagement on health research and the success of consumer engagement programs. All outcomes identified were relatively underexplored within the literature, and inadequately and/or inconsistently evaluated amongst studies. Future research should consult all stakeholder groups to identify outcomes perceived to be reflective of optimal consumer engagement.

Phenomenology of anxiety in people living with mild to moderate dementia: A conceptual meta-ethnographic review.

OBJECTIVES: This conceptual review aims to integrate findings from published qualitative studies focusing on individual experiences of people living with dementia to generate a better understanding and conceptualisation of anxiety in dementia, including its subclinical manifestations. The review aims to inform the clinical practice to facilitate the development of targeted psychological interventions and provision of holistic support to people living with dementia. DESIGN: The review was conducted according to the guide for reporting meta-ethnographic qualitative syntheses eMERGe and the PRISMA guidelines. RESULTS: The search yielded a total of 2947 studies, out of which 13 were included in the final qualitative synthesis. The interpretive synthesis identified common experiences of people living with mild to moderate dementia, characterised by clusters of themes around worry, emotional experiences, and behavioural reactions in response to the diagnosis of dementia and its symptoms. These represent the components of a conceptual framework of anxiety in mild to moderate dementia, where anxiety is triggered by negative appraisals of living with an irreversible neurodegenerative disease. Stemming from these appraisals of dementia progression and its impact on the person's overall future, the content of worrisome thoughts and concerns include the loss of self and identity, losing independence and the ability to perform previous activities, concerns about being a burden to loved ones, and worry about the impact on interpersonal relationships. CONCLUSION: This conceptualisation of anxiety in dementia, including its subclinical manifestations facilitates the development of psychological interventions and provision of holistic support to people living with dementia.