National Dementia Research & Knowledge Translation Forum 2015 Science and Practice: The Big Questions

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1 2 0 5 D E M E N T I A R E S E A R C H & K T F O R U M A B S T R A C T S National Dementia Research & Knowledge Translation Forum 205 Science and Practice: The Big Questions The Dementia Collaborative Research Centres (DCRCs) and the Dementia Training Study Centres (DTSCs), in association with the Australian Journal of Dementia Care, are pleased to publish the following abstracts for presentations delivered at the Ninth Annual National Dementia Research and Knowledge Translation Forum, on Monday 7 and Tuesday 8 September 205 at The Wesley Conference Centre, Sydney NSW. The forum theme is Science and Practice The Big Questions. In addition to showcasing and celebrating the achievements of the DCRCs and DTSCs (in collaboration with partners and consumers) the forum explores the challenges ahead for knowledge translation (KT) and dementia research. About the Dementia Collaborative Research Centres The DCRCs are a dementia research network across three centres in Australia, each with priority research topics. These are: Assessment and Better Care (DCRC-ABC), based at UNSW Australia; Early Diagnosis and Prevention (DCRC-EDP), based at the Australian National University (ANU), Canberra; and Carers and Consumers (DCRC-CC), based at the Queensland University of Technology, Brisbane. The DCRCs priority is meaningful dementia research: the evidence platform for good practice and best policy for a healthy Australia. About the Dementia Training Study Centres The Dementia Training Study Centres are an Australian Government supported initiative. The DTSCs aim to strengthen the capacity of health and aged care sectors to provide appropriate evidence-based prevention and early intervention, assessment, treatment and care for people with dementia. There are five centres based in NSW/ACT (Wollongong, based at the University of Wollongong), Queensland (Brisbane, Queensland University of Technology), VIC/TAS (Melbourne, LaTrobe University), WA (Perth, Curtin University), and SA/NT (Adelaide, based at Alzheimer s Australia SA) 4wallz Vol 4 No 4 August/September 205 Australian Journal of Dementia Care 2

2 2 0 5 D E M E N T I A R E S E A R C H & K T F O R U M A B S T R A C T S Abstract look-up tables 22 Australian Journal of Dementia Care August/September 205 Vol 4 No 4

3 2 0 5 D E M E N T I A R E S E A R C H & K T F O R U M A B S T R A C T S KEYNOTE PRESENTATIONS K What s so great about integrated KT? I Graham, PhD, FCAHS School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa, Canada Integrated Knowledge Translation Research (iktr) is a way of doing that increases the applicability and impact of results. It encompasses many collaborative research models including: co-production of knowledge, participatory research, linkage and exchange, Mode 2 knowledge production, engaged scholarship, and community-based research. IKTR is a paradigm shift, which sees the collaboration of researchers and users of research as an essential step in achieving societal impact. Researchers and knowledge-users, sometimes from multiple communities (eg clinicians, managers, policy makers, patients, and others), work together throughout the research process. Historically, the slow and haphazard uptake of research into practice and policy was considered a dissemination failure (knowledge users were unaware of research), whereas the iktr paradigm considers this gap a result of knowledge production failures (not the right research addressing the right issues). Stakeholders (governments, funders, researchers, health system managers and policy makers, patients and clinicians) are invested in the idea that iktr generates greater and faster societal impact than traditional research because knowledge users are involved in identifying issues and developing solutions based on the research findings. This presentation will review the theory supporting iktr and the emerging empirical evidence about the benefits and challenges of this approach. Take-home messages relevant for dementia and aged care will be highlighted. K2 Falls prevention for people with dementia: is there a need for dementia-focused falls prevention research and translation? K Hill School of Physiotherapy and Exercise Science, Curtin University, WA Falls are a common problem for people with dementia, with up to 90% of people with dementia falling in a 2-month period. In addition, falls by people with dementia are often associated with more serious injuries than falls among older people generally, and can have major consequences for the person with dementia, and their carer / support network. While there has been strong growth in high-level research evidence from randomised controlled trials that a range of single and multifactorial interventions can be effective in reducing falls for older people living in the community in the past 20 years, almost all of these studies have excluded people with cognitive impairment. This presentation will consider the perspective that prevalent and high falls risk groups such as people with dementia will benefit from dementia-focused specific modifications to interventions that have been shown to be effective in older people generally, to maximise the relevance and outcomes of these interventions to people with dementia and their carers. The small amount of emerging randomised controlled trials adopting this approach, particularly in the area of exercise to improve balance, will be discussed, as well as an example aiming to translate this evidence into practice in Gippsland, Victoria. K3 Physical activity and brain health: from dementia risk reduction to treatment of cognitive impairment NT Lautenschlager,2 The Academic Unit for Psychiatry of Old Age, St Vincent s Health, Department of Psychiatry, University of Melbourne; 2 NorthWestern Mental Health, Melbourne Health Regular physical activity is associated with multiple benefits for physical and mental health across the lifespan. There is growing evidence that regular physical activity may be an important protective factor to be included in dementia risk reduction programs for the cognitively healthy population. Studies have also shown that regular physical activity can be beneficial for people with subjective memory complaints, mild cognitive impairment or dementia. Reported benefits relate to physical health, risk of falls, quality of life, mental health and cognition. However there are still many knowledge gaps in relation to the type of physical activity, duration, frequency, intensity, safety and health economics. Because of these knowledge gaps translating the evidence into communities and clinical practice can be a challenge. This paper aims to summarise the current evidence in this area with a focus on knowledge translation. What practical advice should be given to cognitively healthy community members, at health services and in residential care? What details need to be considered when planning to start a physical activity program aiming at cognitive outcomes? How to best identify and overcome barriers to participation, provide feedback, ensure safety and evaluate outcomes? Further, identification of the appropriate skills and professional backgrounds of staff and developing strategies to ensure consumer involvement when planning the program, are essential considerations for successful translation. Despite the current knowledge gaps there is no reason to delay the development of targeted physical activity programs aiming at cognitive outcomes. In addition to further research to address the current knowledge gaps more practical advice needs to be developed to inform communities and clinical practice on how to best start physical activity programs aiming at cognitive outcomes. Vol 4 No 4 August/September 205 Australian Journal of Dementia Care 23

4 2 0 5 D E M E N T I A R E S E A R C H & K T F O R U M A B S T R A C T S K4 Improving dementia care: successful strategies for translational research L Robinson Newcastle University Institute for Ageing, UK Worldwide, the number of people with dementia is estimated to double to 5 million by Dementia presents healthcare with one of the biggest economic and social challenges of the 2st century. In western countries, 40% of dementia care costs are from community and care home costs (Alzheimer s Disease International 200). Despite this, research consistently reveals that people with dementia, and their families, are often in receipt of poorly integrated and inadequate health and social care. Care of people with dementia has particular implications for primary care, with two thirds of people with dementia currently living in their own home or in care homes, cared for by their general practitioner (GP). Internationally some countries have introduced a National Dementia Strategy to raise the quality of care and range of services for people with dementia and their families. Drugs are available to slow the progress of the disease. However a recent report from the World Alzheimer Association (20) has shown that some non-drug approaches could also be effective as a routine part of community dementia care but currently there is limited translation of these approaches into routine practice. This presentation will consider: i) the influence of a National Dementia Strategy on influencing patient experience and quality of care; ii) other facilitators and barriers to translating research into practice. K5 Is translating shared decision-making into practice a fairy story? D Stacey RN, PhD Research Chair in Knowledge Translation to Patients, School of Nursing, University of Ottawa, Canada Individuals with dementia and their family members face many difficult decisions that rely upon patients informed preferences. Interprofessional shared decision making is defined as two or more healthcare professionals collaborating with a patient to exchange information on the best available evidence and reach an agreed upon decision. Effective interventions to facilitate patients engagement in shared decision making are patient decision aids and/or decision coaching. Patient decision aids are typically written or videobased resources, while decision coaching is provided by trained healthcare professionals who are supportive but nondirective. Although there is theoretical and empirical evidence on benefits of shared decision making, it is rarely occurring in clinical practice. The overall aim of this presentation is to discuss strategies to implement an interprofessional approach to shared decision making in clinical practice. K6 (Early Career Keynote*) Cognition-focused interventions for older adults with mild dementia and at risk of dementia: state of the science, central challenges and possible solutions A Bahar-Fuchs Dementia Collaborative Research Centre Early Detection and Prevention, and Centre for Research on Ageing Health and Wellbeing, Australian National University *NHMRC Early Career Fellow (The Joseph Sagol Neuroscience Centre, Sheba Medical Centre, Israel) Research on cognition-focused interventions for older adults, including cognitive training (CT) and cognitive rehabilitation (CR), gained much popularity in recent years across the spectrum from healthy ageing to persons with mild-tomoderate dementia. Whether CT or CR should be clinically recommended for older adults with dementia or for those with MCI has, however, been difficult to establish due to inconclusive evidence. In the present talk, the results of several systematic reviews in this area will be compared and factors contributing to inconsistencies in the findings of these reviews will be discussed. The discussion will highlight, and offer possible solutions, to some of the central questions that researchers need to address for the field to move forward, including: How have our conceptualisations of cognition-focused interventions evolved in the past 20 years? What outcomes should we be focusing on? Biomarkers? Subjectively rated health? Should we focus on efficacy or effectiveness? Is there a difference between the two? What are the sources of our evidence regarding whether something works or not? Should we move from focusing on the design and implementation of RCTs (with all of the associated challenges) and focus on conducting more well-design single-case studies of novel interventions? Should we put our money on complex multi-component interventions or on narrow interventions that specifically focus on a particular approach or technique? Do we understand the impact of disease-related (eg, dementia type, disease-stage) and patient-related (awareness of symptoms, mood, behavioural determinants) factors on the likelihood that a given intervention will be successful/effective for an individual? Finally, the objectives of a recently-formed international Working Group focusing on the development of greater consensus and minimum intervention standards will be shared. K7 Consumer Presentation: A carer s questions I Gilmore Carer, Consumer Advocate (Alzheimer s Australia NSW), and member of Alzheimer s Australia NSW s Sydney Consumer Advisory Group Three years ago, my husband received a diagnosis of Alzheimer s disease. I will share insights from our journey on the bumpy road of younger onset dementia. When contemplating the Big Questions for science and practice, many of mine as a carer start with how rather than why. I will explore a range of topics drawn from our experience of dementia diagnosis (eg stereotypes), lifestyle (eg driving), care choices (eg meaningful respite), and needs for support and information. (For a fuller transcript of this presentation, please see the article on pp9-0 of this issue of AJDC). 24 Australian Journal of Dementia Care August/September 205 Vol 4 No 4

5 2 0 5 D E M E N T I A R E S E A R C H & K T F O R U M A B S T R A C T S FREE PAPER PRESENTATIONS AND POSTERS A Does anxiety predict cognitive decline in the elderly? Findings from the path through life study RN Arthur, ME Mortby, RA Burns, KJ Anstey Centre for Research on Ageing, Health & Wellbeing, Australian National University There is no consensus in the research literature about whether anxiety predicts cognitive decline in older adults. Conflicting results may, in part, be explained by methodological limitations in some studies, including small or biased samples, short study period, unclear empirical distinction between state and trait anxiety, and failure to account for statistical dependence between repeated observations. This study addresses these limitations and investigates the longitudinal association between trait anxiety and cognitive decline in community dwelling, older adults. Drawing data from the PATH Through Life Study (Anstey et al 202), associations between anxiety and cognitive function were investigated in 590 cognitively healthy, older adults (baseline: 49% female; mean age: 62; mean education: 4 years). Observations were taken over three waves at four-yearly intervals. Measures included the Goldberg anxiety and depression scales, Symbol Digit Modalities, Digit Span Backwards (DSB), Immediate and Delayed Recall, Spot the Word, and Mini Mental State Examination (MMSE). Associations were investigated using Latent Growth Curve Modelling (LGCM), while controlling for gender, age, education, and depression. Trait anxiety was associated with initial cognitive performance for MMSE (β=-.26, p=.036), and DSB (β=-.063, p=.034). In the adjusted model, trait anxiety was associated only with the intercept for MMSE (β=-.34, p=.040). Trait anxiety was not associated with the population trajectories in any of the cognitive measures. In an epidemiological sample of community dwelling, older adults, trait anxiety was not associated with population-level change in a range of cognitive functions. To our knowledge, this study is the first to address a number of methodological limitations associated with the investigation of the association between trait anxiety and cognitive decline using a methodologically rigorous LGCM approach. A2 Dementia and Delirium Care with Volunteers Program: translation, partnerships and continuation C Bateman, K Anderson 2, A Blair Southern NSW Local Health District, 2 Australian National University, Canberra, ACT In 2009, in response to the pressing clinical problem of poor outcomes for older people admitted to hospital with dementia or delirium, a group of volunteers was established and trained in a person-centred care approach to supporting patients with cognitive impairment in a rural hospital. The program evaluation found that volunteers were significantly more positive in their attitudes to dementia post program and had significantly greater confidence in their understanding and care for patients with dementia and delirium post education and post program. The volunteer intervention was highly accepted by nursing staff and volunteers with 96% of staff and 00% of volunteers agreeing that the program was worthwhile and should continue. Volunteers perceived that they had a positive effect on patient outcomes, enjoyed their role and felt a sense of achievement and personal reward. Nursing staff perceived the program to support better patient outcomes and was supportive and assistive to them in their patient care. This in turn alleviated their workload in the care of this patient group. Six years on, the initial volunteer program has been sustained with minimal resources, has been replicated in other hospitals around Australia and showcased on Innovations Exchange web sites in the US and Australia. A partnership with the NSW Agency for Clinical Innovation (ACI) Care of the Confused Hospitalised Older Persons program has facilitated the development of a Dementia and Delirium Care With Volunteers implementation and training resource to support further replication. Follow the journey of this project from clinical dilemma to an innovative program in one small hospital to its impact on the evidence base, inclusion in best practice frameworks and dissemination in other hospitals across NSW and Australia. The author will reflect on lessons learned and discuss plans for a larger scale evaluation across seven rural NSW hospitals. A3 - Dementia, financial abuse and banking a knowledge translation study for bank staff S Bhatia, C Peisah,2, J Macnab, C Wijeratne 2, N O Neill,2, H Brodaty 2,3 Capacity Australia (Australian Centre for Capacity, Ethics and the Prevention of Exploitation of People with Disabilities, ACCEPD). 2 - School of Psychiatry, UNSW; 3 Dementia Collaborative Research Centres Assessment and Better Care, UNSW Financial abuse is the most common form of elder abuse. Banks can play an important role in preventing financial abuse of people with dementia, making it vital that frontline staff become familiar with signs and symptoms of dementia so they can spot customers who may need support. Following guidelines modelled by the DCRC Knowledge Translation Team, our methodology comprised: (i) engaging banks in acculturating education about dementia and financial abuse into routine/mandatory training; (ii) canvassing feedback from the banking industry to identify best practice approaches that could be part of a knowledge transfer process; (iii) development of a training module tailored to the industry and able to be tested; and (iv) development and implementation of a dissemination strategy. We undertook interview rounds with senior banking industry personnel representing a range of Vol 4 No 4 August/September 205 Australian Journal of Dementia Care 25

6 2 0 5 D E M E N T I A R E S E A R C H & K T F O R U M A B S T R A C T S financial institutions to ascertain views about policies, practices and knowledge regarding elder financial abuse. The tool was tested on 69 banking staff across Australia from two major banks. Our educational tool integrated: (i) existing knowledge about dementia and financial abuse; (ii) Australian Banking Industry Guidelines on Financial Abuse Prevention and Formal Arrangements; (iii) feedback from consultations with banking staff about abuse scenarios and appropriate strategies, and supported decision-making in the banking environment. We developed an online education tool using adaptive learning developed by Smart Sparrow, an Australian elearning technology company. It comprises a pre-test of 5 multiple choice questions, followed by a learning module tailored to the individual s performance on pre-test, and a post-test to assess knowledge translation. A significant increase in scores was demonstrated when baseline scores were compared with post-course scores (mean score difference = 3.5; SD=.94; t=5.; df=68; p<0.00). This online e-tool provides an effective medium for knowledge translation. The tool has been prepared for sale to the Australian banking industry and we are now engaging other sectors within the financial industry to develop tailored education regarding abuse and financial capacity. A4 Evaluation of the BPSD Guide App for clinicians K Burns, R Jayasinha, H Brodaty Dementia Collaborative Research Centre - Assessment and Better Care, UNSW In 204 the DCRC-ABC was funded by the Commonwealth Department of Social Services to develop the BPSD Guide Electronic Application (App) based on module summaries of the document Behaviour Management, A Guide to Good Practice, Managing Behavioural and Psychological Symptoms of Dementia (BPSD). The scope of the app is to support clinicians in their role of assisting those caring for persons with dementia who present with BPSD in residential aged care community care and family settings. The app was developed for iphone, ipad and Android devices and is publicly available for download from the Apple itunes and Google Play stores. With the progressive integration of emerging technologies into dementia care, research is needed as to their effectiveness to make evidence-based recommendations more accessible for use in clinical practice. This study evaluated the effectiveness of the BPSD Guide App to support clinicians in the management of BPSD when working in the field via the following quantitative and qualitative methods: Analytic data gathered over a nine-month period included number of downloads, active users, average session duration and sections of the app most frequently accessed; a short demographic survey, incorporated into the app, requested information such as professional background, which aged care sector working in and which State or Territory of Australia based in; qualitative data regarding the accessibility, usability and usefulness of the app collected via focus groups with clinicians in each State and Territory. Challenges with recruitment for the evaluation project, such as time and resource constraints as well as issues with technology will be discussed. Findings suggest that this type of technology has the potential to support those caring for persons with dementia and BPSD. Clinicians preferences for the hard copy or app version differed, indicating the need for clinical information to be available across different platforms A5 No link between social isolation and activity participation for nursing home residents with dementia A-N Casey, L-F Low 2, Y-H Jeon 3, H Brodaty Dementia Collaborative Research Centre, Centre for Healthy Brain Ageing, UNSW, 2 Faculty of Health Sciences, The University of Sydney, NSW, 3 Sydney Nursing School, The University of Sydney Perceived social isolation is associated with poorer well-being. Nursing home residents with dementia are at risk of social isolation. Positive co-resident relationships contribute to perceived social support. Structured activities provide opportunity for positive between-resident interaction. Study aims were to describe nursing home residents activity participation and investigate associations between participation and selfreported social isolation and peer network size. Data were collected for 27 residents with dementia aged years (mean=82.6) in a 94-bed nursing home. Observations of activity participation were recorded in field notes. Structured activities were defined as facilitated activities involving two or more residents, not including personal care or routine meals. Residents identified relationships with co-residents and completed a measure of social isolation. Peer network size was defined as the number of relationships identified with coresidents. Relationship data were explored using social network analysis. Associations between activity participation and social isolation and network size were investigated using Spearman s Rank Order correlations. Sixteen residents completed social isolation measures. Residents participated in an average of 3.3 (SD=2.3) unique activities including large events, social groups and therapeutic programs. Peer network size ranged from 0 to 8 residents (median=0, IQR=0 2). No significant associations were found between residents participation in structured activities and perceived social isolation (ρ=-.33, p=.20) and peer network size (ρ=.33, p=.36). Residents participation in structured activities was not associated with their perceptions of social connectedness. The types of activities offered rarely focused on resident relationships. Understanding resident perceptions of social connectedness can guide relational approaches in dementia care practice. A6 Environmental and lifestyle risk factors for younger onset dementia: preliminary results from the INSPIRED study M Cations,, 2 A Withall, B Draper, 2,3 F White, 2 N Denham, 2 J Trollor, 3 P Gonski, A Demirkol, H Brodaty, 2,3,4 P Sachdev, 3,4 C Loy 5 School of Public Health and Community Medicine, UNSW, 2 Dementia Collaborative Research Centre Assessment and Better Care, UNSW, 3 School of Psychiatry, UNSW, 4 Centre for Healthy Brain Ageing, UNSW, 5 School of Public Health, University of Sydney 26 Australian Journal of Dementia Care August/September 205 Vol 4 No 4

7 2 0 5 D E M E N T I A R E S E A R C H & K T F O R U M A B S T R A C T S Younger onset dementia (YOD) accounts for up to 9% of dementia cases, but little is known about its cause. Many environmental and lifestyle factors have been identified to increase risk of dementia in older people. It remains unknown whether these factors are also associated with its early emergence, as a vast majority of YOD epidemiological work references genetic influences alone. We aimed to investigate the risk for degenerative, non-autosomal dominant YOD associated with six potentially modifiable factors: traumatic brain injury, education, depression, cardiovascular risk factors, smoking and alcohol. Participants with YOD were recruited via relevant health care professionals or self-referred, and their dementia diagnosis was confirmed by clinical consensus. Control participants were recruited via their GP clinic and matched by sex and five-year age group. Exposure data was collected using surveys and structured interviews with the participant and/or an informant. At the time of reporting, participants included 59 control participants and 72 people with degenerative YOD, including Alzheimer s disease (6.%), frontotemporal dementias (2.5%), vascular dementias (.2%) and other dementias (5.3%). Control participants had significantly more years of education (M=5.4) than people with YOD (M=3.; p=0.00). In addition, a higher proportion of people with YOD than control participants were ever smokers (65.3% vs 39.2%, OR=.87), had a depression diagnosis in midlife or earlier (40.0% vs 30.6%, OR=.52), and had sustained at least one stroke (.8% vs.7%, OR=3.80), although these differences only approached significance. The risk of stroke remained near significance even after cases of vascular dementia were removed (OR=2.8). There were no significant differences in history of traumatic brain injury, hypertension, diabetes, hypercholesterolemia or alcohol consumption. Low education, depression, stroke and smoking are possible risk factors for younger onset dementia. A7 Mighty oaks from little acorns grow: the development of the Dementia Training Study Centres Fellowship Program C Chenco, C While, M Winbolt Dementia Training Study Centre (VIC/TAS), La Trobe University, Melbourne The Dementia Training Study Centres (DTSCs) support health professionals to transform new and relevant knowledge into evidence-based dementia care. This process of knowledge translation requires education, leadership and change management skills to establish practice change in busy workplaces. In 20, the Victoria and Tasmania DTSC launched the Fellowship program, offering a number of Fellowships to health professionals working in the speciality of dementia care. Successful Fellows develop and conduct a project, implementing contemporary knowledge and practice in their work place. The aim of the Fellowship program is to increase dementia care knowledge of staff caring for people living with dementia and build the capacity of health professionals to translate evidence into practice. Continued evaluation has supported the growth and success of the Fellowship program over the past four years. Initially the Fellowships ran for six months, offered in Victoria and Tasmania, and a mentor was assigned to each Fellow. In 204, the Fellowship was offered nationally and changed to one year in duration. Fellows continued to have access to experts in dementia care, although individual mentors were not assigned. To date, 39 Fellows have completed or are undertaking Fellowships. In 205, the National Practice Improvement Program (NPIP) was established. The NPIP will offer five aged care providers a program of education and support for the four Fellows that have been put forward by each organisation. Each organisation and their Fellows must complete a practice improvement project in each of the four critical care areas: environmental design; sexuality and dementia; medication management; and responding to behavioural and psychological symptoms of dementia. A number of workshops with dementia specialists and guidance to utilise the I2I-A Knowledge Translation framework will be offered. This presentation will discuss the findings of the program evaluation to date and how this has influenced the expansion of the Fellowship program. A8 Connecting learning to clinical competency: a one-stopshop for dementia practice K De Souza, A Moehead Northern NSW Local Health District, Lismore, NSW The Dementia Care Competency and Training Network provides a convenient and efficient platform that connects education and clinical competency. This platform improves clinician knowledge and assists clinicians to translate learning into practice by certifying clinical competency across the 40 domains of dementia practice. Four clinician facilitated courses promote excellence in clinical practice by providing person-centred care as the ethical framework, targeting staff working in acute, community and residential care. All courses are accessible 24/7 and free to NSW Health staff and partners. The Dementia Care Competency Framework was established in partnership with University of Wollongong and senior clinicians within NSW Health and implemented by Northern NSW Dementia Care Network. The competency framework was developed after intense consultation with over 300 clinicians from various disciplines in metropolitan, regional and remote settings. This online tool delivers a means for clinicians from all disciplines to assess their clinical competencies on dementia care delivery. The competency framework is accessible to all clinicians via an accredited selfassessment tool available online and suitable across all settings. It inspires personal reflection and professional development, encourages staff retention, guides and supports performance appraisals and develops team practices and processes. Clinicians provide evidence that guides the development of an action learning plan to improve their skills, knowledge and attitudes through mapped activities. The process is supported through mentor review. Certificates are awarded for portfolio development. Participants who were involved in the recent pilot of the clinical competency framework have provided both positive and valuable feedback. These results will be presented. The Dementia Care Competency and Training Network provides state-of-the-art, innovative and engaging dementia online Vol 4 No 4 August/September 205 Australian Journal of Dementia Care 27

8 2 0 5 D E M E N T I A R E S E A R C H & K T F O R U M A B S T R A C T S resources that are shaping the future of dementia learning by providing metropolitan, rural and remote clinicians an interactive platform for education that is accessible and affordable. The Dementia Care Clinical Competency Framework provides a tool that is groundbreaking, evidence-based and suitable across all settings and disciplines. A9 User experiences and perceptions of an online Alzheimer s disease risk assessment - the ANU-ADRI M Farrow, D O Connor 2, R Kabbani 3, N Cherbuin, K Anstey Centre for Research on Ageing, Health and Wellbeing, Australian National University, 2 Centre for Community Child Health, Royal Children s Hospital, 3 School of Psychology, Deakin University, VIC Many people are concerned about their risk of Alzheimer s disease (AD). The Australian National University Alzheimer s Disease Risk Index (ANU-ADRI) is a validated tool designed to quantify an individual s risk of developing AD, based on the risk and protective factors that have reliable scientific evidence and can be measured by self-report. This study aims to evaluate the acceptability and utility of the ANU-ADRI for its users. A total of 84 Australian adults (age years; 70% female) participated and were instructed to complete the ANU-ADRI (available at anuadri.anu.edu.au) and an evaluation questionnaire which was implemented using SurveyMonkey. There was a high level of satisfaction with the ANU-ADRI: 96% of participants rated it definitely or somewhat easy to use; 9% were definitely or somewhat satisfied that it could accurately assess their risk of AD. Most participants reported they would recommend the ANU-ADRI to others (76%), and 67% were somewhat or very likely to change their behaviour based on their results. However, 65% were not very or not at all likely to talk to a health professional based on their results. Those who reported a family history, compared to those who did not, were significantly more likely to report their results were better than they expected and they were motivated to do something about their risk. Those with a tertiary education, compared to those without, rated the results significantly easier to understand. Participants ratings of the likelihood of potential outcomes for the community were significantly higher than ratings of the applicability to them personally, for negative outcomes including increased depression or anxiety, and for an incentive to speak to their doctor. This evaluation of the ANU-ADRI revealed high user satisfaction with the tool and its utility to assess AD risk, and the potential for the tool to motivate behaviour change. A0 Staff opinions about caring for people with dementia admitted for residential respite E Fielding, M O Reilly, C Neville 2, M MacAndrew, E Beattie Dementia Collaborative Research Centre Carers and Consumers, School of Nursing, Queensland University of Technology, Brisbane, 2 School of Nursing, Midwifery & Social Work, University of Queensland, Brisbane About 70% of people with dementia in Australia live at home, most of them cared for by a family member or close friend ( carer ). Government-funded residential respite (RR) is one of the services available to support carers to continue caring for someone with dementia at home. RR usually involves the person with dementia staying in a residential aged care facility (RACF) for -3 weeks up to three times annually. RR has been well studied from the point of view of carers and of people with dementia, but only one or two researchers has asked RACF staff their opinions about it. As part of a larger intervention study of RR, 82 staff from four RACFs answered a cross-sectional survey with both closed and open-ended questions about their experiences caring for people admitted for respite. People with dementia admitted for RR were perceived by staff as more difficult (mean = 4.9 on 7-point Likert scale) and more time consuming (mean = 5.3) to care for than permanent residents. Staff had to spend extra time learning the respite admission needs of these people and found them more confused and unsettled than permanent residents. Other issues reported by staff included: safety/security (being in an unfamiliar environment); lack of adequate information (eg medication, preferences); and separation anxiety. Existing research portrays residential respite as of mixed utility from the points of view of carers and people with dementia; the current research uncovered issues with RR from the point of view of RACF staff. In suggesting potential ways to improve the RR experience for all involved, the strongest result was the need for more information about the resident s cognitive and physical abilities and needs. Other suggestions included: the placement of familiar objects in the room; more staff to handle the extra care needed; and that the family and resident visit the facility in advance of the respite admission. A Is Knowledge Translation a common language for dementia care systems? R Fleming, B Goodenough,6, E Beattie 2, M Winbolt 3, A Stafford 4, K Cunningham 5 Dementia Training Study Centre (NSW/ACT), University of Wollongong, NSW, 2 Dementia Training Study Centre (QLD), Queensland University of Technology, QLD, 3 Dementia Training Study Centre (VIC/TAS), La Trobe University, VIC, 4 Dementia Training Study Centre (WA), Curtin University, WA, 5 Dementia Training Study Centre (SA/NT), Alzheimer s Australia SA/NT, SA, 6 Knowledge Translation Program, Dementia Collaborative Research Centres The Dementia Training Study Centres (DTSCs) are mandated to deliver health professional education in dementia care. This involves interaction with different care systems and agencies which typically lack channels of knowledge exchange. Analyses to identify service gaps/duplications in dementia care/research typically focus on delivery target. There is room to explore an alternative framework for scoping areas of collaboration between 28 Australian Journal of Dementia Care August/September 205 Vol 4 No 4

9 2 0 5 D E M E N T I A R E S E A R C H & K T F O R U M A B S T R A C T S systems (rather than competition) and identifying opportunities for reducing lag in evidence uptake. To explore a Knowledge Translation (KT) framework as a tool for: (a) finding a common language to promote exchange between multiple stakeholders, and (b) developing outcomes-based comparisons to identify practice-policy-evidence interfaces. Key stakeholders in dementia care (research, systems and models) attended a half-day externally facilitated and scribed round table in Sydney. The event was DTSC-funded and supported by the Knowledge Translation Program for the Dementia Collaborative Research Centres. Stakeholder sectors represented by 24 round table participants included: peak body-2, policy-3, research-3, education-5, services-7 and government/funder-2. Regional coverage was: National-4, ACT-2, NSW-5, QLD-2, VIC-3, TAS-2, SA-, and WA-. Participants explored a four-phase Awareness-Agreement- Adoption-Adherence KT framework. An analysis showed agency activities clustered toward awareness rather than adherence. Lack of a national common metric for KT impact evaluation in dementia care was also noted. Generally, a KT framework was endorsed as useful for partnership building, communications, strategic planning, and developing models to support evidence-based leadership, culture change, and policy development. Future activities that include consumer representation and broader sector involvements are flagged (see round table report (See also the article on pp7-8 of this issue of AJDC). A2 Developing the Eastern Sydney Dementia Assessment Pathway M Freeman, B Draper,2 Prince of Wales Community Health Services, Randwick, NSW 2 Prince of Wales Aged Care Psychiatry, Randwick, NSW Delay in getting a formal diagnosis has been one of the concerns well documented in the care of individuals with dementia (Speechly et al 2008, AA 202). Service fragmentation, alongside with difficulties in accessing equitable and flexible services were also reported (Brodaty 20; NSW Dementia Action Plan ). These areas continue to be the focus for improvement in the National Framework for Action on Dementia Initiatives such as principles of care and pathways were developed for this purpose using various methodologies (NICE 205; Grampians Medicare Local 205). A partnership framework Bridging Partnerships In The Care of Older People With Complex Health Needs, Their Carers and Families is one of the latest evidence-based models which acknowledge the numerous components with a collaborative approach that move towards integrated care (ACI 205). In 200, the need to develop the Northern Sector South Eastern Sydney Local Health District (SESLHD) Dementia Care Pathway has been identified as one of the implementation strategies for the Randwick/Botany Dementia Action Plan While progress has been made, an integrative approach has yet to be considered. This project describes the processes in the development of the pathway underpinned by this collaborative approach. Development of the Eastern Sydney Dementia Care Pathway Tool working group. 2. Surveys of clinicians and consumers from health, community and residential care in the SESLHD Northern Sector regarding the content/format for the pathway. 3. Developing the Eastern Sydney Dementia Assessment Pathway. 4. Request for comments and consultation from relevant stakeholders.. Partnership with other stakeholders including the former Medicare Local (now Primary Health Network), NGOs in community care, Alzheimer s Australia, residential care and service providers from SESLHD established with positive engagement. 2. Survey findings revealed challenges in making referrals for dementia assessment by GPs and health providers as well as locating care services. 3. Staging of the project to include dementia assessment pathway and care service website. 4. Completion of the Eastern Sydney Dementia Assessment Pathway for the GPs and other health professional accompanied by a patient journey map. 5. Feedback from stakeholders. The partnership framework provided an effective platform for providers to work together towards a common goal the development of the Eastern Sydney Dementia Pathway which includes a patient journey map. The working group will continue with the second stage in developing a local website for dementia care and support. A3 - Facilitating culturally safe care of Aboriginal Australians living in residential aged care K Fyfe, A Stafford, S Crowe Dementia Training Study Centre (WA), School of Pharmacy, Faculty of Health Sciences, Curtin University, WA Aboriginal people are experiencing dementia at five times the rate of other Australians a. Aboriginal residents of aged care facilities have unique cultural needs often not met in these facilities. b Currently being piloted, this two-stage project developed educational resources to assist residential aged care facilities (RACFs) and health professionals in providing culturally safe dementia care to Aboriginal residents. In stage one, a film was made of an Aboriginal artist working with Aboriginal residents of the Hall & Prior RACF, Windsor Park, to produce three artworks. In stage two, an Aboriginal Advisory Committee was convened which guided the overall process plus development and Vol 4 No 4 August/September 205 Australian Journal of Dementia Care 29

10 2 0 5 D E M E N T I A R E S E A R C H & K T F O R U M A B S T R A C T S validation of the resulting resources. This process included using a focus group of health professionals involved in stage one to contribute insights into the outcomes and ongoing success of the initial project. Desktop research contributed evidence-based cultural information and identified parts of validated Aboriginal culturally safe tools for incorporation into the final product. Education-focused health professionals from other WA RACFs contributed to validation of the education resource. The final draft product is a half-day workshop where participants are presented with a 30-minute film showing outcomes and insights from stage one, and introduced to the Cultural Assessment Tool and Guide which will facilitate ongoing culturally safe care of the Aboriginal and Torres Strait Islander (ATSI) resident with dementia and their family. The workshop and resources will be piloted during 205 and are planned to be available nationwide in 206. A unique resource to support residential aged care organisations and health professionals to deliver culturally safe care to Aboriginal residents. The resource includes a 30-minute film, followed by a half-day workshop where a cultural assessment tool for ATSI people will be introduced, plus a guide for using this tool with ATSI people with dementia living in RAC. The tool is yet to be piloted, but is planned to become available nationwide in 206 a Smith K, Flicker L, Lautenschlager N, et al (2008) High prevalence of dementia and cognitive impairment in Indigenous Australians. Neurology 7(9) b Brooke NJ (20) Needs of Aboriginal and Torres Strait Islander clients residing in Australian residential aged care facilities. Australian Journal of Rural Health 9(4) A4 Raising awareness of research evidence in dementia care professionals: are workshops useful? B Goodenough,2, R Fleming Dementia Training Study Centre (NSW/ACT), University of Wollongong, 2 Dementia Collaborative Research Centres, Australia In the Knowledge Translation framework of the Dementia Training Study Centres (DTSC), building Awareness of researchderived evidence is a foundation for supporting best practice in dementia care. The educational mandate includes a national workshop program for health professionals, led by experts who are active researchers in key topics. In addition to clinical evidence updates, recent workshops also offered a session on knowledge translation (KT). An enduring challenge is to evaluate the reach of workshops as an Awareness raising tool for practice change. This project explored knowledge transfer outcomes using a measure of research utilisation in three domains: conceptual (awareness raising), instrumental (practice change), and persuasive (education, policy). Face-to-face one-day workshops were delivered in six regions (Sydney, Canberra, Brisbane, Perth, Adelaide, Melbourne). Presenters and topics were drawn from senior expertise in the Dementia Collaborative Research Centres. At 3-6 months after the workshop, attendees were invited to complete an online anonymous 20-item survey, adapted from psychometrically valid research utilisation scales. Feedback from 75 attendees showed that Persuasive uses of workshop material, eg educate others, were endorsed more often (mean 4.4 / 9) than Instrumental uses, eg personal practice change (mean.4 / 4). Frequency ratings for conceptual use of workshop material in everyday practice, eg personal change in beliefs, averaged occasionally. Reports of created a new policy/guideline (Persuasive item) were endorsed more often by those who attended the KT topic. From a research utilisation perspective, knowledge transfer reach for the workshops suggests that Awareness raising outcomes reflect effort by attendees to share learnings with colleagues, rather than personal practice change. Future workshops might consider education in change management principles to support knowledge translation. A5 Using virtual human technology to study hospital nurses decisions about care for people with dementia FA Graham (PhD Supervisory team: ER Beattie, C Windsor, E Fielding, D Tjondronegoro) Queensland University of Technology (QUT), Dementia Collaborative Research Centre Carers and Consumers Evidence suggests hospital nurses are poorly prepared to provide quality care for people with dementia. Studies report how hospital nurses inappropriately manage behavioural symptoms, such as aggression and wandering, with physical and chemical restraints. To improve care, it is necessary to gain a better understanding of the types of decisions nurses make. This descriptive correlational study explores nurses clinical decisionmaking for people with dementia using dual-processing theory (DPT) and is a work in progress. DPT provides an explanatory model for the role of expertise and experience in decision making processes. It proposes two distinct cognitive processes type (intuitive or experiential) and type 2 (analytical or hypotheticodeductive). This study investigates whether independent variables such as experience, place of work, and level of training and education are associated with type or type 2 processing and with the quality of nurses decisions. The data collection tool is a virtual simulation constructed from a clinical case vignette, validated through an expert panel. The vignette illustrates aggression and agitation in a person with dementia who has untreated pain. The virtual simulation is multimodal, integrating virtual human avatars, video clips, and virtual clinical documentation. The avatars are built to spontaneously interact with users via both speech and non-verbal communication, including gestures and facial expressions, thus enhancing clinical reality and context. Data will be collected nationally by recruiting 200 hospital nurses to undertake the virtual simulation. Data will comprise a computer-generated record of decision pathways and cues plus a text record of user/avatar conversations. Analysis will explore associations between pathways, cues and user language and formulate theoretical conclusions. Today s presentation will demonstrate how virtual simulation can provide an innovative method for data collection in research. 30 Australian Journal of Dementia Care August/September 205 Vol 4 No 4