Reimagining Dementia

For all who work with people with dementia Vol 10 No 1 January/February/March 2021 Dementia care in rural & remote Australia 48-page special issue Also inside n Telehealth in Indigenous communities n Rethinking rural care this issue: n The right to public space n Dementia-inclusive theatre COMMENT Australian Journal of Dementia Care Improving rural dementia care Editorial Team Co-Editors: Professor Belinda Goodenough; Associate Professor By Professor Jane Farmer, Director, Lyn Phillipson; Dr Louisa Smith Swinburne Social Innovation Research Institute Managing Editor: Kerry Schelks Contributing Editor: Catherine Ross Production Editor: Andrew Chapman aving spent much of my career researching rural communities and services, I suggest there are three issues that – if tackled – would Editorial Advisors Hhelp to make a difference in rural and remote dementia care. These Dr Marita Chisholm, Innovation and are reflected in articles in this issue of AJDC and in the recent book I co-edited, Remote and Projects Manager Older Persons Rural Dementia Care: Policy, Research and Practice (Innes et al 2020) [see p44]. They are: Health, Rural Northwest Health • Better operationalising care as an ecosystem that makes best use of what is available Mr Dennis Frost, person living with locally, distant and online. dementia and dementia advocate; • Embracing people living with dementia as integral to our rich, ongoing community life. Chair of the Southern Dementia • Understanding dementia as a multi-faceted phenomenon, woven from different cultural, Advisory Group social and biomedical aspects. Ms Lynda Henderson, carer for a As Gardiner et al highlight in this issue (see p35), rural is a distinct service provision person living with dementia; member of space. Internationally, rural populations are ageing, so proportionately rural regions are the Southern Dementia Advisory Group more affected by dementia than cities. Small numbers of people living with dementia in Dr Claire O’Connor, Research Fellow, individual rural places means practitioners may lack experience with dementia. Rural HammondCare; Conjoint Lecturer, people tend to experience layers of adversity, including higher levels of poverty, fewer School of Population Health, UNSW economic opportunities and reduced access to services compared with cities (Lawrence- Associate Professor Lezanne Ooi, Bourne et al 2020). Consequently, dementia may not have highest priority. Principal Research Fellow, University of Care ecosystems: discussion of services for rural places can sometimes seem like a contest Wollongong and the Illawarra Health between online and on-the-ground provision (Perkins et al 2019). Articles in this issue and Medical Research Institute highlight that, in fact, marrying across service offerings is a sensible way ahead. Dr Chris While, Training Consultant, Internationally, there exist some good ideas that can support rural dementia care: WHO Dementia Training Australia; Research has the mhGAP program, a toolkit that can build local skills and knowledge in dementia Fellow, La Trobe University and the care (WHO 2019) and Austria developed the Dementia Service Centre model that helps Australian Centre for Evidence Based rural families, carers and service teams work together around the evolving needs of a Aged Care person living with dementia (Auer et al 2020). Publisher: The Australian Journal of ‘It takes a village’: as highlighted by Leone et al in this issue (p24), people with dementia Dementia Care is published by the should be able to access the full range of services and amenity, as their human right. University of Wollongong and managed However, there are gaps in opportunities for people with dementia to lead enjoyable, by Dementia Training Australia, including thriving lives in communities once they are diagnosed – an issue which surely mitigates website and administrative support against seeking out the early diagnosis that professionals advise. Empathy is a powerful from: Owen Wilkinson, Emma Paul, force, and when I read this lived experience – written for inclusion in our book – my Janice Hurley, and Vanessa Bussoletti understanding of some of the challenges rural residents face began to take shape: Printed by iPS, Sydney. “When I was told I had early onset Alzheimer’s disease I was alone, and I had to get into my car © 2021 University of Wollongong and drive alone for two hours afterwards… for a long time, I couldn’t find the courage to tell anyone. ISSN 2049-6893 Living in a rural area, everyone knows everyone. I had owned a business and lived on the main street… I worried about the reaction of my town. Would they think I was mad?” (Rochford- Editorial and advertising inquiries Brennan 2020 pp268-272). Kerry Schelks The author concluded that ultimately though “it takes a village to support a person [email protected] living with dementia” (p267). With determination, Helen Rochford-Brennan found new Address Building 232 (Mike Codd), ways to live her life in the village, in the process educating her neighbours that people Room 113, Innovation Campus, living with dementia can continue to lead valuable thriving lives. University of Wollongong, NSW 2522, Two-eyed seeing: Lastly, my readings in rural dementia care have led me to understand the Australia value of seeing dementia experiences from the perspectives of different knowledge Website systems and cultures. In our book, Jacklin and Chiovotte (2020) discuss working with www.journalofdementiacare.com Canadian First Nations communities and the significance of marrying Indigenous beliefs Subscriptions $99 (four issues) about dementia with Western biomedical perspectives: “two-eyed seeing” they called it, (see page 48 for details). noting that, “Indigenous populations place less emphasis on the Western diagnostic labels Disclaimer: The opinions expressed in the Australian and biomedical perspectives associated with cognitive decline” (p246). The authors depict Journal of Dementia Care are those of the authors and are not necessarily those of the publisher. Furthermore dementia care with Canadian First Nations communities as best achieved through the publisher and authors do not assume and hereby interweaving traditional cultural beliefs, biomedical interventions and feelings and disclaim any liability to any party for any loss, damage, or disruption caused by errors or omissions, whether experiences related to colonisation. In line with this, it was interesting to read Haszard’s such errors or omissions result from negligence, commentary in this issue (p32) about a DSA consultant in Alice Springs who adopted the accident, or any other cause. Malparara Way – “a cross-cultural practice model developed in the early 1990s”. While the issues I’ve discussed above for improving rural dementia care are significant AJDC DEADLINES 2021: April/May/June: 27/01/21 (submissions); 12/04/21 (publication); in all places, perhaps there are more opportunities to achieve change in rural places where July/Aug/Sept: 23/04/21 (submissions); people still tend to know each other, to look out for each other and where there are policy 12/07/21 (publication); Oct/Nov/Dec: 23/07/21 moves to more place-based delivery. The pandemic has shown that service provision can (submissions); 11/10/21 (publication). Details: change overnight, as the examples highlighted in this issue show. ■ https://journalofdementiacare.com/submissions/ *The Reference list is available on the AJDC website, www.journalofdementiacare.com 2 Australian Journal of Dementia Care January/February/March 2021 Vol 10 No 1 Inside For all who work with people with dementia Vol 10 No 1 January/February/March 2021 this issue... This special 48-page issue of AJDC focuses on dementia care in rural and remote areas of Australia, with articles describing how service organisations and researchers are addressing 9 the specific challenges of providing care and support services in these locations. ■ Project updates & viewpoints Dementia-inclusive theatre 9 Althea Gordon and Tina Firth report on the results and lessons learnt from an innovative arts project in which aged care residents living with dementia participated in eight performances held in their aged care home, in front of audiences of carers, families and the wider community New beginnings: design to support engagement 12 Samantha Neylon and Ruth Payne describe the process of transforming a former convent building into a purpose-built dementia-friendly care home supporting a Montessori approach to dementia care 12 Reimagining Dementia: A Creative Coalition for Justice 16 Reimagining Dementia is an international group of dementia activists and allies who share a vision that challenges biomedical and institutional approaches to care. Coalition Coordinator Mary Fridley explains Dancing through lockdown 18 Gwen Korebrits explains how Dance Health Alliance has enabled people living with dementia to keep active and dancing throughout the COVID-19 lockdowns ■ Rural & remote dementia care Extending dementia care into Indigenous communities 19 The University of Queensland’s Centre for Online Health (COH) is an internationally regarded leader in 19 the field of telehealth. In this article, Anthony Smith (COH Director) and members of his research team explain how telehealth is being used to connect dementia specialists to selected Aboriginal and Islander Community-Controlled Health Services in Queensland A rights-based approach to dementia-inclusive public spaces 24 People living with dementia and their carers in rural and regional areas

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