Dear Glenn. Thank you. Pino Migliorino Chair NCCDN. National Cross Cultural Dementia Network Newsletter 2

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2 Dear Glenn On behalf of the National Cross Cultural Dementia Network NCCDN) I would like to formally recognise your role and contribution to the work of this important Network, and our sense of loss at your departure. In what has always been a challenging and complex area, your leadership in Alzheimer s Australia has been mature, considered and highly successful in both gaining attention to dementia issues and the important role that Alzheimer s Australia play in advocating for the needs of people with dementia and the families. Having dementia established as a national health priority can in significant part be attributed to your efforts and in your support of the efforts of others in the broader aged care sector. From a personal perspective your have been extremely supportive of the NCCDN as well as challenging us to make a difference. You willed us not just to say that things needed to change, but to do something about it through ideas, initiatives and in providing the organisation with a knowledgeable and capable internal and external advocacy. The love and respect you have gained from this group is palpable and deep. I know that I speak for every individual in the Network when I express our gratitude to you and our very best wishes for your ongoing career. We will now look forward to forging a strong and fruitful relationship with the new CEO and continue with the work you have supported for so many years. Thank you Pino Migliorino Chair NCCDN National Cross Cultural Dementia Network Newsletter 2

3 Alzheimer s Disease International (ADI) and Alzheimer s Australia are pleased to announce that registration to attend the 30th International Conference of Alzheimer s Disease International is open. To be held in Perth, Australia, April 2015, the conference Care, Cure and the Dementia Experience A Global Challenge promises to be an engaging conference Topics include: Latest developments in science Past, Present and Future of dementia Prevention International and Political Environment Supporting and Enabling People Living with Dementia The level of interest shown in the conference already has been fantastic, and it is lining up to be an event not to be missed, CEO of Alzheimer s Australia WA Rhonda Parker said. Australia plays an important role in contributing to the global body of knowledge in dementia research and care, and I would urge anyone who wants to hear about the latest findings on dementia to attend in More information on the conference can be found at Why should you attend the ADI 2015 conference? An engaging programme of dynamic presentations, workshops and exhibits to learn about the latest dementia research and gain insight into innovations in dementia care. An opportunity for people living with dementia to come together, share your stories, have your voices heard and provide inspiration. One of the world s largest and most important conferences on Alzheimer s disease. More than 1,500 delegates from over 60 countries are expected to attend the conference in the beautiful city of Perth, Australia. Interact with the world s leading healthcare professionals, engage with experts from across the dementia field and meet with old friends. Local meets global: a strong local and international presence creating unique synergies and inspiring new ideas in the pursuit of making a difference in the lives of those living with dementia. Sources: ADI is the international federation of 84 Alzheimer associations throughout the world. Each of our members is a non-profit Alzheimer association supporting people with dementia and their families. ADI was founded in 1984 and registered as a nonprofit organisation in the USA. Based in London, ADI has been in official relations with the WHO since 1996 and has had consultative status with the UN since ADI's vision is an improved quality of life for people with dementia and their families throughout the world. For more information, visit National Cross Cultural Dementia Network Newsletter 3

4 Alzheimer s Australia website is world-class in the information it provides for a range of consumers, covering people with dementia, carers, families and professionals. It is worth spending some time navigating through the website to see what information and links are available. For information on the National Cross Cultural Dementia Network please see following link NCCDN For a list of CALD resources and publications please refer to the following links: Dementia resources and publications about people from culturally and linguistically diverse (CALD) backgrounds. CALD resources and websites Dementia resources and websites about people from culturally and linguistically diverse (CALD) communities. CALD publications Dementia publications and resources about people from culturally and linguistically diverse (CALD) communities. Information in other languages Dementia information is available in a number of languages. If there are other resources which you belief could be included, please feel free to drop a line to the NCCDN Secretariat, nccdn@alzheimers.org.au CHAIRPERSON Pino Migliorino NSW Yvonne Santalucia South West Sydney Area Health Service Dr Desiree Leone Western Local Health District VIC Maree McCabe Alzheimer s Australia Vic Grace Roberto Alzheimer s Australia Vic Jaklina Michael RDNS Nicky Hayward-Wright Knowledge Management Consultant Dr Dina LoGiudice Royal Park Campus Melbourne Health QLD Dino Bazarbassis Nova Community Care WA Anju Sivarajah Alzheimer s Australia WA ACT Lily Muthurajah Multicultural HACC SA Gosia Skalban Domiciliary Care Ron Sinclair National Carer Advisory Committee Dr. Faizal Ibrahim Consultant Geriatrician QEH TAS Di Carter Alzheimer s Australia TAS NT Dr Sadhana Mahajani Alzheimer s Australia NT FECCA Liz Pugh AUSTRALIAN GOVERNMENT Mark Gaukroger ALZHEIMER S AUSTRALIA Glenn Rees Ellen Skladzien SECRETARIAT Helena Kyriazopoulos National Cross Cultural Dementia Network Newsletter 4

5 10 th & 11 th March 2015, Mercure Sydney Get Commonwealth Home Support Program ready From 1st July 2015, the Australian Government will launch the Commonwealth Home Support Programme, which is central to the aged care reforms, and will support the development of an end-to-end aged care system. Service providers will need to ready themselves for this big change. This conference will provide clarity on what the programme will look like and how to effectively manage the process of transitioning to the Commonwealth Home Support Programme. This conference will address how to: Unpack and prepare for the changes to come under CHSP Make the cultural and organisational shift towards wellness Adapt to the nationally consistent fee policy Ready your workforce for new assessment structures For more information on the conference, please refer to the following link: Transitioning to the Commonwealth Home Support Programme Conference 2015 Dementia Congress MELBOURNE February 2015 For more information click 30th International Conference of Alzheimer s Disease International PERTH April 2015 For more information click International Conference on Ageing in a Foreign Land ADELAIDE June 2015 For more information click Federation of Ethnic Communities Council SYDNEY 5-6 November 2015 of Australia National Cross Cultural Dementia Network Newsletter 5

6 Building Capacity for the Emerging Aged Care Needs of Culturally and Linguistically Diverse Communities (CALD) Project - Outcomes Plus The Project aims to: Identify CALD communities with emerging aged care needs. Develop tools, resources and strategies that provide practical support to CALD communities to assist them in developing competitive Aged Care Approvals Round (ACAR) applications. Project Partners The Outcomes Plus team is supported by: Professor Graeme Hugo and Dr. Helen Feist of the Australian Population and Migration Research Centre at the University of Adelaide ( The National Partners in Culturally Appropriate Care (PICAC) Network The Project has three stages. Stage 1 Gathering national demographic data that identifies CALD communities with emerging aged care needs. Data will be compiled by Professor Graeme Hugo and Dr. Helen Feist from the Australian Population and Migration Research Centre at the University of Adelaide. Outcomes Plus will also consult nationally with identified CALD communities (with emerging aged care needs) to determine the depth of need and type of assistance required by the different CALD communities. Stage 2 - Consolidate the research and consultation findings into two documents. The first document will be a high level overview document for Communities on core aspects of the ACAR, whilst the second document will be a more comprehensive resource and planning manual, which will step readers through the issues, identify additional resource materials including legislation and regulations, outline pathways and emphasize successful outcomes. Stage 3 - Will incorporate two levels of training; firstly, representatives from CALD communities with emerging aged care needs will be invited to participate in a one day briefing workshop (in each capital city) that will walk participants through the two key documents, provide an opportunity to engage on key issues and assist participants to begin planning for the next ACAR. These workshops will also be used to test the draft material, recommend amendments and determine CALD community ACAR interest and potential barriers to their participation in the ACAR process. Additional workshops will be held for specific staff working in the ACAR area to assist them to. For further information please contact Outcomes Plus ( or aldacar@outcomesplus.com.au ). National Cross Cultural Dementia Network Newsletter 6

7 This article addresses one part of the outcomes of research commissioned by the Federation of Ethnic Communities Councils of Australia (FECCA). The Australian Population and Migration Research Centre reviewed the Australian research on older people from culturally and linguistically diverse (CALD) backgrounds to promote translation of research in CALD aged care practices. FECCA will release the report and several fact sheets, and a database, early in In the meantime, of the four broad topic areas covered in the review, one was older people from CALD backgrounds with dementia. The prevalence of dementia within the older CALD population in Australia is expected to increase more than three-fold in the next few decades, from approximately 35,000 in 2010 to a projected 120,000 older CALD Australians living with dementia by Poor understanding of dementia combined with cultural stigma attached to dementia leads to denial of the condition and/or delayed diagnosis for some older people from CALD backgrounds. Understanding of dementia could be improved by presenting information to the general community; CALD community groups; family members who care for an older person with dementia; and older people from CALD backgrounds who are, or potentially will be, affected by dementia. has been established as a culturally sensitive dementia assessment tool for use in Australia. Some groups identified at risk include older CALD people with dementia living in mainstream residential care facilities. Risks include social isolation and disruptive behaviour because of communication barriers. Additionally, the review found there is a need for increased understanding of dementia among aged care nurses and support workers. In terms of research about dementia, older CALD people are often excluded from dementia research due to language barriers, leading to gaps in the evidence base. Greater detail will be available when the full report is released in Keep an eye on this newsletter for details! Liz Pugh Senior Policy and Project Officer Health and Ageing FECCA More information about dementia, including information tailored to specific CALD populations, needs to be disseminated in order to promote a better understanding of the signs and symptoms of the disease and to reduce stigma. Culture and ethnic background can have an impact on dementia diagnosis and culturally sensitive assessment tools are required and should be used where they exist. For instance, the Rowland Dementia Universal Access Screening tool (RUDAS) National Cross Cultural Dementia Network Newsletter 7

8 Chung Wah Community and Aged Care (CAC) is a Western Australia based not-for-profit organisation dedicated to improving the quality of life of people from non-english speaking backgrounds. We have been delivering community care programs for seniors, their family members and ethnic communities since More than 700 customers are actively accessing and using our services and programs delivered by our professional bilingual staff, support workers and volunteers, who are committed to improving the quality of life of people from diverse backgrounds including those with dementia. Additionally, we are the oldest ethnic organisation in Western Australia. Over time, we have enjoyed a close working relationship with Alzheimer s Australia WA. Continuing this relationship, the focus this year for Chung Wah has been participating in Alzheimer s Australia s Dementia Champion training program. Amy, one of the staff members, shares her learning experience from the program: I hope dementia is no longer viewed as a stigma and that people with dementia are able to integrate into the community. We all know that people have similarities and differences; people from the same geographic region often share similar beliefs, behaviours and customs. Despite relocating to Australia people continue to practice the familiar routines of their culture to varying degrees. Furthermore, as a person develops dementia they often return to the values, tastes and preferences of their origins which often is different to mainstream culture. Therefore, I believe that dementia integration is not only spiritual but also cultural. the carer. Carers may have a full time caring role, which may be stressful at times, and therefore carer support is vital for the wellbeing of all involved. Providing a caring, happy and fulfilling environment for a person with dementia can be both challenging and rewarding. Carers need to tend to their own wellbeing to ensure the best quality of life for everyone involved. The majority of our clients at Chung Wah CAC s come from a non-english speaking background. A holistic approach to assessment is utilized, addressing their cultural and linguistic needs, to obtain information about the person as a whole from physical, psychological, social, spiritual and emotional aspects. At Chung Wah we acknowledge and share cultural differences in people. The same can be said for our colleagues such as Alzheimer s Australia WA; the more we know about their culture the better we can work alongside them. We all should strive for a culturally inclusive environment where people are shown mutual respect regardless of beliefs and values, and where there is clear open communication as well as explicit understandings about expectations and critical self-reflection. Cultural awareness is one foundation of communication and it involves the ability of standing back from ourselves and becoming aware of our cultural values, beliefs and perceptions. At Chung Wah we respect each other s cultural values and beliefs.. Chung Wah is a CALD specific service provider, and we understand that caring for a close family member or friend not only has an impact on the carer s emotional wellbeing, but also on their physical wellbeing. We have observed that in some cases, caring is seen as a duty or expectation to repay a parent or spouse. Sometimes carers feel burdened in their caring role, often feeling trapped in a relationship. In some instances the mechanical aspects of providing care are considered sufficient whilst the personal interaction which involves love, compassion, empathy and trust may be lacking. Often the basis for this type of care relates to past events and family interactions that may not have been positive for National Cross Cultural Dementia Network Newsletter 8

9 Interpreter mediated cognitive assessments stakeholder experiences informing guidelines and training DVD and use of video conferencing software. Dementia affecting those of Culturally and Linguistically Diverse (CALD) communities in Australia is a growing issue. Social justice and equity of access to care can be compromised by the communication gaps which frequently occur during interpreter-assisted cognitive assessments. There is a shortage of interpreters in many languages, even in metropolitan areas, and difficulties for people to access services with appropriate interpreters. Recent developments in telehealth have improved access for some people, but there has been little research exploring the use of videoconferencing, particularly with interpreters, for mental health interviews. A particular research gap is the use of remote interpreting for these assessments. The National Ageing Research Institute (NARI) was funded by Alzheimer s Australia Research Foundation, Institute for a Broadband Enabled Society (IBES) and the Victorian Department of Health to explore the experiences and perceptions of stakeholders in cognitive assessments that involve the use of interpreters. The aims of the project were to: Explore clinicians, family members and interpreter perceptions of their experience of a multicultural cognitive assessment; Develop interpreter guidelines and a DVD for the conduct of cognitive assessments with people from CALD backgrounds; Pilot the use of video-conferencing in interpreter mediated cognitive assessments. Results of the Research The study provided a wider understanding of the role and expectations of clinicians, interpreters and carers/family members in the interpreter mediated cognitive assessment. Better understanding of any gaps or barriers in the assessment interview process, especially as related to misunderstandings of the role of the interpreter, should enable more accurate and prompt assessment and less stress for the families and carers. The need for improved accuracy of terminology and concepts, as well as ongoing training and awareness raising regarding the interpreting interaction process. The guidelines and demonstration DVD have the potential to increase both interpreter and clinician confidence and reduce the possibility of mismatched expectations during cognitive assessment interviews. The process of developing the guidelines, in particular the scoping exercise, highlighted the need for ongoing training and resources to be available for interpreters and clinicians. It has also highlighted gaps in knowledge about existing training courses. For more information on the project please refer to the following link National Cross Cultural Dementia Network Newsletter 9

10 Alzheimer s Australia Alzheimer s Disease International Australian Government Australian Multicultural Foundation Centre for Cultural Diversity in Ageing Federation of Ethnic Communities Council Any questions or comments are welcome. To subscribe/unsubscribe or if you have any information you would like to see included in future editions please contact: E: nccdn@alzheimers.org.au P: (08) NATIONAL DEMENTIA HELPLINE This newsletter was funded by the Australian Government Alzheimer s Australia DISCLAIMER: The views expressed in this work are the views of its author/s and not necessarily those of the Australian Government. National Cross Cultural Dementia Network Newsletter 10