Post-diagnosis young-onset dementia care in the National Disability Insurance Scheme.

OBJECTIVE: Post-diagnosis service delivery for young-onset dementia (with onset prior to 65 years) recently moved to the disability system in an attempt to address systemic barriers to best practice in aged care. The objective of this study was to examine experiences and satisfaction with disability services so far among people with young-onset dementia and their care partners and identify strategies for service and system improvement. METHODS: The 151 participating Australians living with young-onset dementia or providing informal care to a person with young-onset dementia were recruited via social media, advocacy bodies and specialist medical clinics. A cross-sectional online survey asked participants to provide a timeline of their interactions with the disability system so far and rate their satisfaction with the disability system, aged care and disability services. RESULTS: Participants reported a mean age at symptom onset of 55 years. In all, 53% were diagnosed with Alzheimer's disease and 25% were diagnosed with frontotemporal dementia. Sixty percent had received an approved plan from the National Disability Insurance Scheme, although 3% were rejected. More than 27% waited longer than 6 months to receive their plan, and half waited at least a month post-approval to access services. Less than 30% agreed that the National Disability Insurance Scheme understands dementia, and fewer than half felt that the process of accessing National Disability Insurance Scheme funding is easy and fast enough. Nonetheless, respondents remained overwhelmingly in favour of young-onset dementia services remaining in the disability system rather than in aged care. CONCLUSIONS: While people with young-onset dementia and their care partners strongly agree with their inclusion in the National Disability Insurance Scheme, a relatively low level of experience with dementia in the disability workforce and a lack of integration with the healthcare and aged care systems continue to create important barriers for accessing the services they need.

What do health professionals need to know about young onset dementia? An international Delphi consensus study.

BACKGROUND: People with young onset dementia (YOD) have unique needs and experiences, requiring care and support that is timely, appropriate and accessible. This relies on health professionals possessing sufficient knowledge about YOD. This study aims to establish a consensus among YOD experts about the information that is essential for health professionals to know about YOD. METHODS: An international Delphi study was conducted using an online survey platform with a panel of experts (n = 19) on YOD. In round 1 the panel individually responded to open-ended questions about key facts that are essential for health professionals to understand about YOD. In rounds 2 and 3, the panel individually rated the collated responses in terms of their importance in addition to selected items from the Dementia Knowledge Assessment Scale. The consensus level reached for each statement was calculated using the median, interquartile range and percentage of panel members who rated the statement at the highest level of importance. RESULTS: The panel of experts were mostly current or retired clinicians (57%, n = 16). Their roles included neurologist, psychiatrist and neuropsychiatrist, psychologist, neuropsychologist and geropsychologist, physician, social worker and nurse practitioner. The remaining respondents had backgrounds in academia, advocacy, or other areas such as law, administration, homecare or were unemployed. The panel reached a high to very high consensus on 42 (72%) statements that they considered to be important for health professionals to know when providing care and services to people with YOD and their support persons. Importantly the panel agreed that health professionals should be aware that people with YOD require age-appropriate care programs and accommodation options that take a whole-family approach. In terms of identifying YOD, the panel agreed that it was important for health professionals to know that YOD is aetiologically diverse, distinct from a mental illness, and has a combination of genetic and non-genetic contributing factors. The panel highlighted the importance of health professionals understanding the need for specialised, multidisciplinary services both in terms of diagnosing YOD and in providing ongoing support. The panel also agreed that health professionals be aware of the importance of psychosocial support and non-pharmacological interventions to manage neuropsychiatric symptoms. CONCLUSIONS: The expert panel identified information that they deem essential for health professionals to know about YOD. There was agreement across all thematic categories, indicating the importance of broad professional knowledge related to YOD identification, diagnosis, treatment, and ongoing care. The findings of this study are not only applicable to the delivery of support and care services for people with YOD and their support persons, but also to inform the design of educational resources for health professionals who are not experts in YOD.

How Did the COVID-19 Restrictions Impact People Living With Dementia and Their Informal Carers Within Community and Residential Aged Care Settings in Australia? A Qualitative Study.

The aim of this study was to explore how formal social support changed after implementation of the COVID-19 public health measures and how these restrictions affected people living with dementia and their informal carers in Australia. Sixteen informal carers and two people living with dementia were interviewed between August and November 2020. Participants were asked about their experiences of the pandemic and the impact that the restrictions had on their lives and care. Thematic analysis identified four overarching themes describing (a) prepandemic limitations of the aged care system, (b) the aged care system's response to the COVID-19 restrictions, (c) changes affecting informal carers, and (d) the challenges faced by people living with dementia. The findings highlighted the challenges faced by the Australian aged care system before the pandemic and the additional burden placed on informal carers who supported people living with dementia across residential and home settings during the pandemic.

Professional development training preferences of occupational therapists working with older adults in Australia: A discrete choice experiment.

INTRODUCTION: Members of the public expect occupational therapists to provide evidence-based practice. Participation in professional development activities is essential to update knowledge and acquire skills to enable delivery of evidence-based assessment and intervention. Therapists commonly choose to participate in professional development through attending training workshops. Little is known about occupational therapists' preference of how continuing professional development training programmes should be designed and delivered. METHODS: An online quantitative survey of occupational therapists working with older people in Australia, conducted June to September 2018, incorporated a discrete choice experiment to elicit and estimate preferences for professional development training when acquiring skills in delivering an evidence-based intervention. A series of questions asked participants to choose one of two options for training, each differing in terms of attributes (level of recognition, mode of learning, follow-up post-training and cost to establish willingness to pay). Statistical analyses were conducted according to recommended practice in the field of choice-modelling. RESULTS: A total of 108 responses were received from occupational therapists practicing around Australia. Therapists reported a strong preference for receiving post-training support to implement their new skills in practice and would be willing to pay an additional A$200 for training that included this option. They also highly regarded achieving 'certification' in their new skill (willing to pay an additional A$100) and having the opportunity to become a 'Master Trainer' in the future (willing to pay an additional A$200). DISCUSSION: This study generates new knowledge about aspects of a professional development training programme that occupational therapists' value and aspects that they are willing to compromise on when acquiring new skills that they intend to use in their practice. These findings can influence the training programme design utilised by those working in implementation research and providers of continuing professional development for health professionals.

Implementation of an evidence-based intervention to improve the wellbeing of people with dementia and their carers: study protocol for 'Care of People with dementia in their Environments (COPE)' in the Australian context.

BACKGROUND: There are effective non-pharmacological treatment programs that reduce functional disability and changed behaviours in people with dementia. However, these programs (such as the Care of People with dementia in their Environments (COPE) program) are not widely available. The primary aim of this study is to determine the strategies and processes that enable the COPE program to be implemented into existing dementia care services in Australia. METHODS: This study uses a mixed methods approach to test an implementation strategy. The COPE intervention (up to ten consultations with an occupational therapist and up to two consultations with a nurse) will be implemented using a number of strategies including planning (such as developing and building relationships with dementia care community service providers), educating (training nurses and occupational therapists in how to apply the intervention), restructuring (organisations establishing referral systems; therapist commitment to provide COPE to five clients following training) and quality management (coaching, support, reminders and fidelity checks). Qualitative and quantitative data will contribute to understanding how COPE is adopted and implemented. Feasibility, fidelity, acceptability, uptake and service delivery contexts will be explored and a cost/benefit evaluation conducted. Client outcomes of activity engagement and caregiver wellbeing will be assessed in a pragmatic pre-post evaluation. DISCUSSION: While interventions that promote independence and wellbeing are effective and highly valued by people with dementia and their carers, access to such programs is limited. Barriers to translation that have been previously identified are addressed in this study, including limited training opportunities and a lack of confidence in clinicians working with complex symptoms of dementia. A strength of the study is that it involves implementation within different types of existing services, such as government and private providers, so the study will provide useful guidance for further future rollout. TRIAL REGISTRATION: 16 February 2017; ACTRN12617000238370 .

Dynamic exit pupil trackers for autostereoscopic displays.

This paper describes the first demonstrations of two dynamic exit pupil (DEP) tracker techniques for autostereoscopic displays. The first DEP tracker forms an exit pupil pair for a single viewer in a defined space with low intraocular crosstalk using a pair of moving shutter glasses located within the optical system. A display prototype using the first DEP tracker is constructed from a pair of laser projectors, pupil-forming optics, moving shutter glasses at an intermediate pupil plane, an image relay lens, and a Gabor superlens based viewing screen. The left and right eye images are presented time-sequentially to a single viewer and seen as a 3D image without wearing glasses and allows the viewer to move within a region of 40 cm × 20 cm in the lateral plane, and 30 cm along the axial axis. The second DEP optics can move the exit pupil location dynamically in a much larger 3D space by using a custom spatial light modulator (SLM) forming an array of shutters. Simultaneous control of multiple exit pupils in both lateral and axial axes is demonstrated for the first time and provides a viewing volume with an axial extent of 0.6-3 m from the screen and within a lateral viewing angle of ± 20° for multiple viewers. This system has acceptable crosstalk (< 5%) between the stereo image pairs. In this novel version of the display the optical system is used as an advanced dynamic backlight for a liquid crystal display (LCD). This has advantages in terms of overall display size as there is no requirement for an intermediate image, and in image quality. This system has acceptable crosstalk (< 5%) between the stereo image pairs.

Frameworks for cultural adaptation of psychosocial interventions: A systematic review with narrative synthesis.

INTRODUCTION: Psychosocial dementia interventions may be less effective when used with populations for whom they were not initially intended. Cultural adaptation of interventions aims to increase effectiveness of interventions by enhancing cultural relevance. Use of theoretical frameworks may promote more systematic cultural adaptation. The aim of this review was to provide a comprehensive synthesis of published cultural adaptation frameworks for psychosocial interventions to understand important elements of cultural adaptation and guide framework selection. METHOD: Five scientific databases, grey literature and reference lists were searched to January 2023 to identify cultural adaptation frameworks for psychosocial interventions. Papers were included that presented cultural adaptation frameworks for psychosocial interventions. Data were mapped to the framework for reporting adaptations and modifications to evidence-based interventions, then analysed using thematic synthesis. RESULTS: Twelve cultural adaptation frameworks met inclusion criteria. They were mostly developed in the United States and for adaptation of psychological interventions. The main elements of cultural adaptation for psychosocial interventions were modifying intervention content, changing context (where, by whom an intervention is delivered) and consideration of fidelity to the original intervention. Most frameworks suggested that key intervention components must be retained to ensure fidelity, however guidance was not provided on how to identify or retain these key components. Engagement (ways to reach and involve recipients) and cultural competence of therapists were found to be important elements for cultural adaptation. CONCLUSIONS: Comprehensive frameworks are available to guide cultural adaptation of psychosocial dementia interventions. More work is required to articulate how to ensure fidelity during adaptation, including how to identify and retain key intervention components.

Designing an Alternative, Community Integrated Model of Residential Aged Care for People Living with Dementia: Nominal Group Technique and Thematic Analysis.

BACKGROUND: Small-scale models of dementia care are a potential solution to deinstitutionalize residential aged care and have been associated with improved resident outcomes, including quality of life and reduced hospitalizations for people living with dementia. OBJECTIVE: This study aimed to generate strategies and ideas on how homes for people living with dementia in a village setting within a suburban community, could be designed and function without external boundaries. In particular, how could residents of the village and members of the surrounding community access and engage safely and equitably so that interpersonal connections might be fostered? METHODS: Twenty-one participants provided an idea for discussion at three Nominal Group Technique workshops, including people living with dementia, carers or former carers, academics, researchers, and clinicians. Discussion and ranking of ideas were facilitated in each workshop, and qualitative data were analyzed thematically. RESULTS: All three workshops highlighted the importance of a surrounding community invested in the village; education and dementia awareness training for staff, families, services, and the community; and the necessity for adequately and appropriately trained staff. An appropriate mission, vision, and values of the organization providing care were deemed essential to facilitate an inclusive culture that promotes dignity of risk and meaningful activities. CONCLUSION: These principles can be used to develop an improved model of residential aged care for people living with dementia. In particular, inclusivity, enablement, and dignity of risk are essential principles for residents to live meaningful lives free from stigma in a village without external boundaries.

Cross-sector learning collaboratives can improve post-diagnosis care integration for people with young onset dementia.

Post-diagnosis young onset dementia (YOD) care is often fragmented, with services delivered across aged care, healthcare, and social care sectors. The aim of this project was to test the feasibility and potential effectiveness of a learning collaborative implementation strategy for improving the cross-sector integration of care for people with YOD and to generate data to refine the implementation strategy for scaleup. We conducted a longitudinal mixed methods process evaluation and recruited one representative from three Australian aged care organisations, three disability care organisations and three organisations (n = 9) contracted to deliver care navigation services. One representative from each organisation joined a learning collaborative within their local area and completed a six-module online education package incorporating written resources, webinars, collaboration and expert mentoring. Participants identified gaps in services in their region and barriers to care integration and developed a shared plan to implement change. Normalisation Process Theory was applied to understand the acceptability, penetration and sustainability of the implementation strategy as well as barriers and enabling factors. Dementia knowledge measured by the Dementia Knowledge and Awareness Scale was high among the professionals at the start of the implementation period (mean = 39.67, SD = 9.84) and did not change by the end (mean = 39.67, SD = 8.23). Quantitative data demonstrated that clinicians dedicated on average half of the recommended time commitment to the project. However, qualitative data identified that the learning collaborative strategy enhanced commitment to implementing integrated care and promoted action towards integrating previously disparate care services. Participant commitment to the project was influenced by their sense of obligation to their team, and teams that established clear expectations and communication strategies early were able to collaborate and use the implementation plan more effectively (demonstrating collective action). Teams were less likely to engage in the collective action or reflexive monitoring required to improve care integration if they did not feel engaged with their learning collaborative. Learning collaboratives hold promise as a strategy to improve cross-sector service collaboration for people with YOD and their families but must maximise group cohesion and shared commitment to change.

Age of Symptom Onset and Longitudinal Course of Sporadic Alzheimer's Disease, Frontotemporal Dementia, and Vascular Dementia: A Systematic Review and Meta-Analysis.

BACKGROUND: Understanding how the age of dementia symptom onset affects the longitudinal course of dementia can assist with prognosis and care planning. OBJECTIVE: To synthesize evidence regarding the relationship of age of symptom onset with the longitudinal course of sporadic Alzheimer's disease (AD), vascular dementia (VaD), and frontotemporal dementia (FTD). METHODS: We searched Medline, CINAHL, Embase, PsycINFO, PubMed, and Scopus for longitudinal studies that examined the impact of sporadic AD, VaD, or FTD symptom onset age on measures of cognition, function, or behavioral symptoms. Studies that examined age at diagnosis only were excluded. Quantitative meta-analysis was conducted where studies reported sufficient data for pooling. RESULTS: Thirty studies met all inclusion criteria (people with AD (n = 26), FTD (n = 4)) though no studies examined VaD. Earlier onset of AD was associated with more rapid annual cognitive decline (estimate = -0.07; 95% CI -0.14 to 0.00; p = 0.045). Most studies that stratified their sample reported that younger AD onset (usually < 65 years) was associated with more rapid cognitive decline. Other evidence was inconclusive. CONCLUSION: Younger people with AD appear to have a poorer prognosis in terms of faster cognitive decline than older people with AD. More research is required to determine the impact of symptom onset age in VaD and FTD, and on functional decline in all dementias.

Home-based, tailored intervention for reducing falls after stroke (FAST): Protocol for a randomized trial.

RATIONALE: People with stroke experience falls at more than twice the rate of the general older population resulting in high fall-related injuries. However, there are currently no effective interventions that prevent falls after stroke. AIMS: To determine the effect and cost-benefit of an innovative, home-based, tailored intervention to reduce falls after stroke. SAMPLE SIZE ESTIMATE: A total of 370 participants will be recruited in order to be able to detect a clinically important between-group difference of a 30% lower rate of falls with 80% power at a two-tailed significance level of 0.05. METHODS AND DESIGN: Falls after stroke trial (FAST) is a multistate, Phase III randomized trial with concealed allocation, blinded assessment, and intention-to-treat analysis. Ambulatory stroke survivors within five years of stroke who have been discharged from formal rehabilitation to the community and who have no significant language impairment will be randomly allocated to receive habit-forming exercise, home safety, and community mobility training or usual care. STUDY OUTCOMES: The primary outcome is the rate of falls over the previous 12 months. Secondary outcomes are the risk of falling (proportion of fallers), community participation, self-efficacy, balance, mobility, physical activity, depression, and health-related quality of life. Health care utilization will be collected retrospectively at baseline and prospectively to 6 and 12 months. DISCUSSION: The results of FAST are anticipated to directly influence intervention for stroke survivors in the community.Trial Registration: ANZCTR 12619001114134.

Implementing a Reablement Intervention, "Care of People With Dementia in Their Environments (COPE)": A Hybrid Implementation-Effectiveness Study.

BACKGROUND AND OBJECTIVES: The translation of reablement programs into practice is lagging despite strong evidence for interventions that maintain function for the person living with dementia as well as improve carer well-being. The aim was to evaluate the implementation of an evidence-based program, Care of People with Dementia in Their Environments (COPE), into health services. RESEARCH DESIGN AND METHODS: An implementation-effectiveness hybrid design was used to evaluate implementation outcomes while simultaneously involving a pragmatic pre-post evaluation of outcomes for people with dementia. We report uptake, fidelity to intervention, outcomes for people living with dementia and carers, and beliefs and behaviors of interventionists contributing to successful implementation. RESULTS: Seventeen organizations in Australia across 3 health contexts, 38 occupational therapists, and 17 nurses participated in training and implementation. While there were challenges and delays in implementation, most organizations were able to offer the program and utilized different models of funding. Overall, we found there was moderate fidelity to components of the program. Pre-post outcomes for carer well-being and coping (Perceived Change Index, p < .001) and activity engagement of the person living with dementia (p = .002) were significantly increased, replicating previous trial results. What contributed most to therapists implementing the program (Determinants of Implementation Behaviour Questionnaire) was a stronger intent to deliver (p < .001), higher confidence (p < .001), a sense of control in delivery (p = .004), and a belief the program was very useful to their clients (p = .002). DISCUSSION AND IMPLICATIONS: This study demonstrated that implementation is possible in multiple health systems and beneficial to individuals and their families.

Modeling of the diffraction efficiency and polarization sensitivity for a liquid crystal 2D spatial light modulator for reconfigurable beam steering.

A nematic liquid crystal spatial light modulator used as a phase-modulating device and operating in the reflective mode is analyzed using three-dimensional modeling. Two configurations, which differ in their electrode placement relative to a fixed quarter-wave plate, are considered across a range of steering directions, with the grating conformal and in some cases oblique to the pixel grid. For each steering direction the sensitivity of the diffraction orders to the polarization state of the incident wavefront is studied. Optimal alignment of the liquid crystal is suggested to reduce this sensitivity.