Biggs S

Blair A

Chen

Fitzgerald JA

Flavin T

Goeman DP

Haapala I

Harrison SL

Kurrle S

Ratcliffe J

Sinclair C

Australasian Journal on Ageing

English

Biggs, Simon

Haapala, Irja

Kurrle, Susan

Helsingin yliopiston digitaalinen arkisto

https://helda.helsinki.fiOrganising care, practice and participative research : Papersfrom the cognitive decline partnership centreBiggs, Simon2019-09Biggs , S , Haapala , I & Kurrle , S 2019 , ' Organising care, practice and participativeresearch : Papers from the cognitive decline partnership centre ' , Australasian Journal onAgeing , vol. 38 , pp. 3-5 . https://doi.org/10.1111/ajag.12679http://hdl.handle.net/10138/310978https://doi.org/10.1111/ajag.12679cc_bypublishedVersionDownloaded from Helda, University of Helsinki institutional repository.This is an electronic reprint of the original article.This reprint may differ from the original in pagination and typographic detail.Please cite the original version.Australas J Ageing. 2019;38(Suppl. 2):3–5.  wileyonlinelibrary.com/journal/ajag  | 3Received: 25 April 2019 | Revised: 6 May 2019 | Accepted: 9 May 2019DOI: 10.1111/ajag.12679  I N V I T E D  E D I T O R I A LOrganising care, practice and participative research: Papers from the cognitive decline partnership centreThis Special Issue of the Australasian Journal of Ageing draws on a selection of projects arising from the activities of the Cognitive Decline Partnership Centre (CDPC; https : //cdpc.sydney.edu.au/), led by Professor Sue Kurrle of the University of Sydney. The CDPC is perhaps unique in that it arose from a partnership between the Australian National Health and Medical Research Council and a group of leading aged care providers, including HammondCare, Brightwater, Helping Hand plus Dementia Australia who were concerned that more research was needed to address the everyday needs, practices and experiences of those who work and live with dementia.From the beginning of the partnership, the focus has been on generating an evidence base for improved care and sup-port to people living with dementia and their carers. CDPC projects have focussed on four core areas: supporting the implementation of tested models of care, knowledge mobil-isation of existing research, creating collaborative new re-search evidence and building capacity to translate research into practice. Over a five‐year period, from 2013 until the end of 2018, the Centre initiated 31 projects impacting demen-tia care practices across Australia. The development of the first Australian Clinical Practice Guidelines for People with Dementia was a major achievement of the program, influ-encing the ways care is delivered across community, residen-tial and hospital care both nationally and internationally. A second element of the notion of partnership was an evolving and deepening relationship with the Consumers Dementia Research Network (CDRN). The CDRN, consisting of people living with dementia and carers who joined provider repre-sentatives to advise on all projects, sat on the executive and governance committees of the whole initiative. The CDRN was replaced with the Dementia Australia National Dementia Consumer Network in 2017, and members of this Network have continued to be involved. At the project level, when co‐creation worked at its best, research questions, fieldwork and the analysis of results, included discussion and debate between the members of specially created advisory groups and the research teams. Each member of an advisory group brought special expertise in order to make the research robust and relevant to the practical issues at hand.We have selected twelve papers for this special issue that address aspects of the organisation of care, practice and re-search, the majority of which include collaborations between researchers, care providers, carers and people living with de-mentia. Flavin and Sinclair1 provide a commentary on the process of consumer involvement over a three‐year research initiative. Consumer and researcher perspectives are consid-ered as part of investigating supported decision‐making in the context of dementia. They make the case for developing guidelines to support consumer involvement in dementia research.Chen et al2 review the use of medication in residential aged care facilities. Residents in aged care homes, they con-clude, are increasingly exposed to polypharmacy and high‐risk medications associated with medication‐related harm. This review suggests that the Australian government‐funded Residential Medication Management Review program is a useful service to identify and resolve medication‐related problems.Biggs, Carr and Haapala3 explore the different perspec-tives people hold about the effect of dementia on daily life. Those perspectives included people living with dementia, carers, health and social work‐related professionals plus pro-fessionals from the service industries. Dementia may have social, psychological, carer role‐related, material, service‐based and disparity‐based impacts. It is argued that dementia generates its own forms of social disadvantage and exclusion that should give rise to new policy and practice priorities.Blair, Bateman and Anderson4 examine how trained vol-unteers contributed to improvements in the emotional and physical care for older cognitively impaired patients with benefits for both staff and families. A volunteer co‐ordinator was required to carefully screen and support volunteers and foster relationships and teamwork between staff and volun-teers. With clear role delineation and trained volunteers, they argue, can provide a low‐cost strategy to improve safety and care in rural hospitals.Fitzgerald, Curry, Meierink and Cully5 report on a visual journey through the health‐care system as experienced by people living with dementia and their carers. The outlines of an “ideal” journey emerged, providing justification for a This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.© 2019 The Authors. Australasian Journal on Ageing published by John Wiley & Sons Australia, Ltd on behalf of AJA Inc.4 |   INVITED EDITORIALnationwide program of key improvements. The use of co‐cre-ated solutions through engaging consumers as co‐researchers was found to be invaluable in assisting the implementa-tion of key themes and findings when developing dementia guidelines.Goeman et al6 report on co‐design as part of a research process involving people with dementia, their care partners, aged care service experts, policymakers and academics. Lessons are drawn from a project on the key worker role in community settings. Co‐design took place across the design, conduct, implementation and outcomes, and is argued to have facilitated a robust support worker framework and a model for including the varying needs of consumers in research studies.Haapala, Carr and Biggs7 report that national and local campaigning have complementary functions as change agents in addressing public health and social aspects of de-mentia. Policy, they suggest, should address specific prior-ities arising from distinctive voice perspectives, including people with dementia, carers and different professional groups, if messages are to be accepted. Interpersonal con-nection, advocacy and ‘being a normal part of society’ were identified as priorities.Harrison et al8 examine the differences in staffing struc-tures between clustered and standard models of care. They argue that an increased ratio of trained personal care atten-dants to nursing staff does not negatively influence the quality of life. When deployed in residential aged care with increased levels of appropriate training, personal care assistants can im-prove the level of direct care time for the residents without negatively affecting resident outcomes.Ratcliffe et al9 provide evidence on the application of a qualitative think aloud methodology to actively engage people with dementia and their carers in valuing particular quality‐of‐life states. People with dementia and carers used a range of decision‐making strategies, thereby facilitating as-sessment of the benefits of dementia care services and sup-ports for economic evaluation from their own perspective.Biggs and Carr10 examine the role of regulation in resi-dential care for people with dementia. They found that or-ganisations adapt using three distinctive orientations. Staff at different levels also responded, based on strategic, operational and interactional priorities in an attempt to balance the pres-sures of dementia care with regulatory control. They suggest that understanding how regulation is interpreted can be used to improve dementia care within a regulated environment.Sinclair, Field, Blake and Radoslovich11 examine the Australian Law Reform Commission's ‘Decision Making Principles’12 for Australian aged care providers. Their paper looks at the policies of Australian aged care providers against a set of decision‐making principles based on international human rights instruments. A self‐assessment audit tool can assist aged care providers in the review of policies about health care and lifestyle decision‐making.Kurrle et al13 explore the implementation of a model of care for hospitalised older patients with cognitive impairment, called the CHOPS program. In six New South Wales hospi-tals, increases in cognitive screening, risk identification, as-sessment and the management of cognitive impairment, plus communication with carers, were found. Improvements in staff knowledge and confidence, plus environmental changes, occurred.Overall, these papers provide a useful snapshot of key projects in the work of the Cognitive Decline Partnership Centre. We hope that they encourage you to visit the CDPC website (https ://cdpc.sydney.edu.au/), where a variety of full reports, guidelines and other materials can be found.Simon Biggs1,2,3Irja Haapala1,4Susan Kurrle51School of Social and Political Sciences, The University of Melbourne, Melbourne, Victoria, Australia2Brotherhood of St Laurence, Melbourne, Victoria, Australia3Faculty of Social Science, University of Helsinki, Helsinki, Finland4School of Applied Educational Science and Teacher Education, University of Eastern Finland, Joensuu Campus,Joensuu, Finland5Division of Rehabilitation and Aged Care, Hornsby Ku‐ring‐gai Health Service, Hornsby, New South Wales, AustraliaORCIDSimon Biggs   https://orcid.org/0000-0002-2808-8134 Irja Haapala   https://orcid.org/0000-0001-5624-3018 Susan Kurrle   https://orcid.org/0000-0003-3448-4181 REFERENCES 1. Flavin T, Sinclair C. Reflections on involving people living with dementia in research in the Australian context. Australas J Ageing. 2019; 38: 6‐8. 2. Chen et al. Process, impact, and outcomes of medication review in Australian residential aged care facilities: a systematic review. Australas J Ageing. 2019; 38: 9‐25. 3. Biggs S, Haapala I, Carr A. Dementia as a source of social disad-vantage and exclusion. Australas J Ageing. 2019; 38: 26-33. 4. Blair A, Bateman C, Anderson K. “They take a lot of pressure off us”: volunteers reducing staff and family care burden and contrib-uting to quality of care for older patients with cognitive impairment in rural hospitals. Australas J Ageing. 2019; 38: 34‐45. 5. Fitzgerald JA, Curry J, Meierink AO, Cully A. Putting the con-sumer in the driver's seat: a visual journey through the Australian healthcare system as experienced by people living with dementia and their carers. Australas J Ageing. 2019; 38: 46‐52.   | 5INVITED EDITORIAL 6. Goeman DP, Corlis M, Swaffer K, et al. Partnering with people with dementia and their care partners, aged care service experts, policy makers and academics: a co‐design process. Australas J Ageing. 2019; 38: 53‐58. 7. Haapala I, Carr A, Biggs S. What you say and what I want: pri-orities for public health campaigning and initiatives in relation to dementia. Australas J Ageing. 2019; 38: 59‐67. 8. Harrison SL, Dyer SM, Milte R, Liu E, Gnanamanickam S, Crotty M. Alternative staffing structures in a clustered domestic model of residential aged care in Australia. Australas J Ageing. 2019; 38: 68‐74. 9. Ratcliffe J, Hutchinson C, Milte R, et al. How do people with demen-tia and family carers value dementia specific quality of life states? An explorative ‘Think Aloud’ study. Australas J Ageing. 2019; 38: 75‐82. 10. Biggs S, Carr A. How provider organisations interpret regulation in the context of dementia care. Australas J Ageing. 2019; 38: 83‐89. 11. Sinclair C, Field S, Blake M, Radoslovich H. An examination of organisational policies for healthcare and lifestyle decision‐making among Australian aged care providers. Australas J Ageing. 2019; 38: 90‐97. 12. Australian Law Reform Commission's ‘Decision Making Principles’. https ://www.alrc.gov.au/publi ction s/natio nal-decis ion-making-princ iples . Accessed April 11, 2019. 13. Kurrle S, Bateman C, Cumming A, Pang G, Patterson S, Temple A. Implementation of a model of care for hospitalized older pa-tients with cognitive impairment (the CHOPs program) in six New South Wales hospitals. Australas J Ageing. 2019; 38: 98‐106.

Organising care, practice and participative research : Papers from the cognitive decline partnership centre

Biggs, S

Haapala, I

Kurrle, S

University of Melbourne Institutional Repository

Organising care, practice and participative research: Papers from the cognitive decline partnership centre

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Organising care, practice and participative research : Papers from the cognitive decline partnership centre

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