<p>Ministerial Dementia Forum</p><p>‘Dementia Care – Core Business’</p><p>Held on 6 November 2015</p><p>FINAL REPORT Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT Disclaimer</p><p>Inherent Limitations This report has been prepared as outlined in the Department of Social Services (DSS) Order for Services executed 26 October 2015. The services provided in connection with this engagement comprise an advisory engagement, which is not subject to assurance or other standards issued by the Australian Auditing and Assurance Standards Board and consequently no opinions or conclusions intended to convey assurance have been expressed. The findings in this report are based on a qualitative study and the reported results reflect a perception of participants who attended the Ministerial Dementia Forum on 6 November 2015 but only to the extent of the sample surveyed, being the DSS approved representative sample of service providers, clinicians, carers, people with dementia and the Australian Government. Any projection to wider personnel and/or stakeholders is subject to the level of bias in the method of sample selection. No warranty of completeness, accuracy or reliability is given in relation to the statements and representations made by, and the information and documentation provided by, service providers, clinicians, carers, people with dementia and Australian Government stakeholders consulted as part of the process. KPMG have indicated within this report the sources of the information provided. We have not sought to independently verify those sources unless otherwise noted within the report. The report is dated 28 January 2016 and KPMG accepts no liability for, and has not undertaken work in respect of, an even subsequent to that date which may affect the report. KPMG is under no obligation in any circumstance to update this report, in either oral or written form, for events occurring after the report has been issued in final form. The findings in this report have been formed on the above basis.</p><p>Third Party Reliance This report is solely for the purpose set out in the DSS Order for Services executed 26 October 2015 and for DSS’ information, and is not to be used for any other purpose or distributed to any other party without KPMG’s prior written consent. This report has been prepared at the request of DSS in accordance with the terms of the DSS Order for Services executed 26 October 2015. Other than our responsibility to DSS, neither KPMG nor any member or employee of KPMG undertakes responsibility arising in any way from reliance placed by a third party on this report in whole or in part, in any format. Any reliance placed is that party’s sole responsibility.</p><p>Electronic Distribution Responsibility for the security of any electronic distribution of this report remains the responsibility of DSS and KPMG accepts no liability if the report is, or has been, altered in any way by any person.</p><p>2</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT Executive summary</p><p>Dementia is the gradual, progressive and irreversible decline in brain function. It is a syndrome, meaning it is characterised by multiple symptoms which may include difficulties with language, memory, perception, changes in personality and reduced cognitive skills. It can result from one, or a combination of over 100 identified causes, the most common of which are Alzheimer’s disease and vascular disease. With age as the major non-modifiable risk factor, the prevalence of dementia approximately doubles every five years beyond the age of 65 and, for those aged 85 and over, the prevalence is approximately one in every four persons. With Australia’s ageing population, it is important that the Australian Government provides appropriate levels of support for people with dementia, their carers and family, and aged care service providers to ensure that people with dementia receive high quality care. The inaugural Ministerial Dementia Forum, ‘Dementia Care – Core Business for Aged Care’, was held on 11 September 2014 in Melbourne. The second Ministerial Dementia Forum was held on 6 November 2015 in Melbourne, with 71 participants from across Australia representing service providers, clinicians, carers and people with dementia and the Australian Government. During the Forum, participants discussed the following questions, whilst remaining within the current funding envelope: 1. How do we ensure dementia consumers can navigate the interfaces between the health and aged care systems? 2. How could dementia care be improved in the context of the changes to aged care, particularly the planned empowerment of consumers? 3. In the context of the Analysis of Dementia Programmes, what objectives and outcomes would you like to see for the Government’s dementia support programmes? This report captures the feedback provided on the day by the Forum’s participants. The main themes that emerged from each discussion shared many common elements, which are presented below: 1 The empowered consumer  The needs of consumers and carers must be at the centre of dementia care, and any changes to the system must be informed by consultation on their perspective and experiences.  There should be a positive approach taken to dementia care, by focusing on quality of life, how to live well with dementia, and creating dementia friendly communities.</p><p>3</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT  The cultural shift towards consumer directed care will be challenging for providers and the healthcare system, however it will ultimately lift the quality of care.  Quality in consumer directed care relies on having a large, open market where supply exceeds demand. However, in some rural and regional areas, or in places where there is a lack of coverage, alternatives need to be explored.  Empowering consumers introduces additional considerations, in particular balancing: - Risks from consumer choices against duty of care - Cost of consumer choices against their wants and needs - The wants and needs of other consumers.  It is important that certain groups of consumers, such as consumers without carers or people with younger onset dementia, do not fall through gaps in the system. There could be a role for advocacy or broker services for these groups.  Mechanisms such as tying funding to the consumer, or developing consumer rating systems, present opportunities for consumer empowerment. 2 Service linkages and care coordination  Consumers and carers have difficulty navigating the primary, acute, and aged care systems due to the siloed and fragmented nature of services. Structural barriers between services should be identified and removed.  Having a single point of contact, such as through a case manager or key worker, may be valuable and help to navigate this system.  Linkages between services need to be encouraged, while taking an ecosystem approach that also includes intersections with social care and the community.  These linkages will also assist with information transfer, which currently depends on the carer. As the roll out of the Personally Controlled Electronic Health Record (PCEHR) will assist this, accelerating its adoption through the aged care sector is important. 3 Community awareness  There is still significant stigma associated with dementia, which impacts on quality of life, as well as timely diagnosis and access to services.  Access to information and services can prevent consumers from entering hospital or crisis care. To access relevant services, consumers need to be aware of their existence and comfortable with the access points.  Access to independent, timely and good quality information is fundamental for enabling consumer empowerment. 4 Education and training  Education for all parties is vital: - For the broader community, to reduce stigma - For consumers and carers, to understand consumer directed care, their rights and responsibilities, and how to access services, as well as how to contribute to decision making and policy</p><p>4</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT - For providers, to embed the paradigm shift of consumer directed care - For general practitioners, registered nurses and allied health professionals, to aid in timely diagnosis.  The current standard of education is variable. Setting minimum standards of education and training would ensure consistency.  Workforce sustainability is important, as the best care happens in the context of consistent relationships, across all settings. Formalising a career pathway in dementia care would help to retain skilled staff. 5 Research  It is important that models of care are based on research and a strong evidence base. This requires the translation of research into provider practice, policy development and service design, and the dissemination of findings.  There is a body of international research and practice that can be drawn on to inform models of care. 6 A national, outcomes based approach  A national approach to various aspects of dementia care would aid in standardisation of delivery. Such a national strategy could cover: - A vision for dementia care in Australia - Nationally consistent standards and outcomes.  Quality indicators and outcomes for people with dementia are important as the systems move to quality-based models. The current quality indicators programme needs to include people with dementia.  Quality indicators needs careful definition, as a narrow focus on only clinical outcomes may jeopardise the quality of life of consumers. Indicators should support the best quality of life for consumers, as defined by the consumer and carer.  Outcomes need to be considered at multiple levels, including the consumer, the carer, the dyad (person with dementia and their carer), and the population.</p><p>5</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT Contents</p><p>6</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT</p><p>1 Background</p><p>Dementia is the gradual, progressive and irreversible decline in brain function. It is an umbrella term describing a syndrome, meaning it is characterised by multiple symptoms which may include difficulties with language, memory, perception, changes in personality and reduced cognitive skills. 1 Dementia can result from one, or a combination of, over 100 identified causes, the most common of which are Alzheimer’s disease and vascular causes.2 Dementia is not a natural part of ageing, yet age is the major non-modifiable risk factor, and as a result, the likelihood of developing dementia approximately doubles every five years beyond the age of 65.3 Amongst those aged 85 and over, the prevalence of dementia is approximately one in every four persons.4 As a result of the ageing population, the number of people in Australia with dementia is expected to grow from an estimated 343,000 people in 2015 to around 900,000 by 2050.5 Around 70 per cent of Australians with dementia are living in the community.6 Given dementia’s profound health and quality of life consequences, it has become a national health priority. Dementia has become one of the major reasons why older people enter residential aged care or seek assistance to continue to live in their own homes. While the Government provides a suite of dementia support programmes, they only represent a small component of the broader support available to people with dementia through the health and aged care systems: In 2015-16, the Commonwealth has budgeted $16 billion for aged care7, which is 3.6 per cent of the Commonwealth budget and around 1 per cent of the gross domestic product (GDP). Of the $11 billion8 budgeted for residential aged care in 2015-16, over 50 per cent will provide support for residents who are likely to have dementia. People living in the community with dementia generally access services from their General Practitioners (GPs) and either the Commonwealth Home Support Programme or the Home Care Packages Programme. With an estimated 83,000 people with dementia being admitted to hospital every year 9 and an estimated 550,000 dementia specific GP attendances every year, a significant proportion of both Commonwealth and State/Territory health budgets are used assisting people with dementia. Complementing the health and aged systems are carer support payments and the disability support systems.</p><p>1 Australian Institute of Health and Welfare (AIHW) 2012, Dementia in Australia, catalogue no. AGE 70, AIHW, Canberra. 2 AIHW, Dementia, viewed November 2015 http://www.aihw.gov.au/dementia/ 3 AIHW 2004, The Impact of dementia on the health and aged care systems, catalogue no. AGE 37, AIHW, Canberra. 4 AIHW 2012. Dementia in Australia. 5 AIHW, Dementia, viewed November 2015 http://www.aihw.gov.au/dementia/ 6 AIHW 2012. Dementia in Australia. 7 2015-16 Commonwealth Budget papers. 8 Department of Social Services budget papers. 9 AIHW 2012. Dementia in Australia. 7</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT The inaugural Ministerial Dementia Forum, ‘Dementia Care – Core Business’, was held on 11 September 2014 with the aim of establishing what is needed to improve the provision of dementia care both in residential aged care and home care, whilst remaining within the current funding envelope. The purpose of the second Ministerial Dementia Forum was broader in focus than the inaugural Forum, seeking feedback from participants on the following key questions, whilst remaining within the current funding envelope: 1. How do we ensure dementia consumers can navigate the interfaces between the health and aged care systems? 2. How could dementia care be improved in the context of the changes to aged care, particularly the planned empowerment of consumers? 3. In the context of the Analysis of Dementia Programmes Report, what objectives and outcomes would you like to see for the Government’s dementia support programmes?</p><p>8</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT</p><p>1 Approach</p><p>The second Ministerial Dementia Forum, ‘Dementia Care – Core Business’, was held on 6 November 2015 with 71 participants from across Australia representing service providers, clinicians, carers and people with dementia and the Australian Government (See Appendix 1 for a list of the participant organisations). The forum was CoChaired by Associate Professor Susan Koch and Ms Sue Pieters- Hawke. Associate Professor Susan Koch and the Hon Ken Wyatt gave short addresses to open the Forum. Associate Professor Mark Yates also gave a presentation on the Dementia Care in Hospitals Programme – Cognitive Impairment Identified Symbol, while Sue Pieters-Hawke delivered the Forum’s closing address. The Forum consisted of three workshop sessions, involving round table discussions amongst the table groups, with the key findings presented to the broader group. The three workshop sessions answered the following key questions. Within the current funding envelope: 1. How do we ensure dementia consumers can navigate the interfaces between the health and aged care systems? 2. How could dementia care be improved in the context of the changes to aged care, particularly the planned empowerment of consumers? 3. In the context of the Analysis of Dementia Programmes, what objectives and outcomes would you like to see for the Government’s dementia support programmes? Each table had a scribe to capture the key ideas within the discussions. Following the conclusion of the Forum, scribes’ reports were sent to table captains for verification, after which theme analysis was undertaken to inform this report. The intention of this report is to provide an accurate record of the discussions of the day and does not include additional analysis beyond the theme analysis of what was discussed by forum participants. A summary of the workshop sessions is outlined in Section Forum Outcomes. </p><p>9</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT</p><p>2 Forum Outcomes</p><p>The following section reflects key and additional themes that emerged from the group discussion during each of the three Group Sessions.</p><p>10</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT</p><p>2.1 Group Session 1</p><p>2.1.1 Question How do we ensure dementia consumers can navigate the interfaces between the health and aged care systems? Thinking about a person with dementia’s journey through the primary care, home care, acute care and residential care systems: What is working well? What is not working well? How can the linkages between these systems be improved?</p><p>2.1.2 Key themes Focus on the consumer and positive living Any reform to the system should be informed by the perspective of consumers, who need to be consulted with in order to learn from their experiences. Services should be aligned to a consumer directed care (CDC) approach. This would include focusing on a positive approach of how to live well with dementia. This is a cultural shift that does not always align well with the health care system. What CDC entails is more challenging for consumers with cognitive issues. The dyad (person with dementia and their carer) will thus play an important role in the process, and there needs to be broad awareness of this. However, it also must be recognised that dyads will not exist for all consumers, such as for the homeless elderly or those without a carer. The provider should be accountable to the consumer or their carer. This could be achieve by tying funding to the consumer or the dyad. Foster linkages and care coordination The health system can be siloed, which can make it difficult for consumers and carers to navigate and leads to limited transfer of knowledge and information. There are multiple barriers and structural issues in the health system that lead to this fragmentation. For example, regulations around who is allowed to work within particular environments prevents GPs from working in hospitals. Information transfer between services currently depends on the carer. If the consumer is without a carer, this information is not shared. Linkages need to be made to improve sharing of the consumer’s medical history and diagnosis across the systems. The roll out of the personally controlled electronic health record (PCEHR) system will assist with this by providing medical information and care plans in one accessible location. Accelerating this roll out in the aged care sector is important.</p><p>11</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT Having a single point of contact through the consumer’s journey – such as through a case manager or expanding the concept of the key worker – would assist with this. As case management is expensive, and not everyone has access to a key worker due to long wait times, there should remain multiple access points to the system, depending on consumer need. Any linkages between services needs to occur across the primary health, residential care and acute care sectors. As well as linkages to other services, an ecosystem approach would also include a focus on the intersection with social care and the community. When considering the interfaces between ageing and aged care, the interaction of consumers with disability services must also be considered. Improve access to information and services Providing appropriate access to information and services can help keep consumers out of hospital or crisis care. In order to access relevant services, consumers need to be both aware that the services exist, and comfortable with the access points. Currently, it is difficult for them to discover what is available and how to access it, and consequently how well they move through the system can depend on the carer. There are multiple types of information that could be provided to consumers, and clarity is needed around the objective of this information. For example, information could be provided about dementia, or about empowerment. For carers, information could simply be given about the system, or it could include how to be a case manager. Early and timely diagnosis is important for consumers. As primary care is often the first point of contact before diagnosis, health professionals need to have the knowledge and capability to recognise symptoms, as well as diagnostic supports and linkages with primary health care networks, and specialist clinics or specialists. The knowledge and capability of health professionals to recognise symptoms of dementia could be facilitated by increased dementia training for registered nurses, general practitioners and other allied health professionals at university. There are differing views as to whether there should be multiple points of access for information and services. The current system is regarded by some as confusing and disjointed, which could be resolved by having one point of access. However, having a single point of access may result in some consumers being unable to access the system. Community awareness Further community education on dementia is needed in order to reduce the associated stigma and to provide awareness concerning advanced care plans and end-of-life planning. This would also assist in promoting access to relevant services. Education should be provided throughout the consumer’s journey, rather than just towards the end.</p><p>12</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT A strategy for home care packages should be provided prior to 2018, to enable consumers to know what to expect in terms of community support. Focus on research and evidence based approaches A stronger emphasis on research around how to improve the effectiveness of the interfaces between the health and aged care systems would be beneficial. We can learn from international research and practice: Scotland and Norway were highlighted as having better interfaces between the health and aged care systems Norway has teaching residential aged care facilities Scotland has a case management programme. Information on current examples of good practice is currently not disseminated widely. Such good practice includes: Models driving a holistic approach to care Key worker programmes Examples of some aged care provider practice Geriatric Evaluation and Management (GEM) at home (in Victoria) InReach hospital programme (in Victoria). It is important that pilots are based on research methodology, to enable a considered understanding of which are working and which are not. This would then inform the creation of evidence based models.</p><p>2.1.3 Additional themes While there has been some improvement for people with younger onset dementia, such as with early diagnosis, some of the programmes used for people with younger onset dementia are transitioning to the National Disability Insurance Scheme. There is uncertainty as to the impact on existing programmes and whether it will create a gap in services for these people.</p><p>13</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT</p><p>2.2 Group Session 2</p><p>2.2.1 Question How could dementia care be improved in the context of the changes to aged care, particularly the planned empowerment of consumers? What opportunities and challenges does empowerment of consumers present for dementia care in your organisation? What innovations can you make to better inform dementia consumers? Is there additional information that would assist you in improving your dementia care?</p><p>2.2.2 Key themes Empowered consumers There is a shift from consumers being passive to being demanding in terms of service delivery. This creates challenges, however will ultimately lift the quality of care. As well as empowering consumers, the carer should be empowered from the beginning to be a part of the decision-making process. The opportunities for people with dementia are the same as the opportunities for all consumers. However, those with significant impairment will need access to advocacy to ensure those opportunities are realised, particularly if they lack a carer. There is a role for advocates or broker and linking services. There are groups of consumers, such as the homeless, and people without family or carers, who need to have skilled people to work with them to find solutions that they cannot find themselves. This may need to be funded in the package. Organisations could explore an advocate or broker service to provide linking with the community, and creative problem solving, especially where consumers have refused service or providers are refusing a referral. Empowerment requires consumers and carers to make informed decisions. To enable this, they need access to information and resources that are independent, of high quality and up to date. Preplanning is also important to ensure that consumers and carers are aware of the journey and can make these informed decisions. Various services, such as Airbnb and TripAdvisor, have developed reasonably consistent user ratings. There is therefore the capacity for a consumer rating system, based on categories determined by a consultation process. The Eldercare model is an example of a model that empowers consumers to make decisions. Timely diagnosis is a right of individuals. There should also be automatic supports provided upon diagnosis, such as in the Scottish model (see ‘Scotland’s National Dementia Strategy’ (June 2010), and the 2013-2014 Local Delivery Plan guidance issued to National Health Service Boards).</p><p>14</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT Defining quality of care Quality of care must be carefully defined, and should include more than clinical indicators. Subjective ideas, such as flexibility of daily schedule, quality of relationships, continuity of staff, and freedom, need to be included. A narrow focus would jeopardise the quality of life of consumers – for example, a focus on preventing falls may limit the freedom provided to consumers. It would also bias against some providers that may lack the latest facilities, but would otherwise score very well in other quality of life indicators. We want to support the consumer’s best quality of life (as opposed to best quality of care), as defined by the consumer and the carer. However, the consumer and the carer are not always in agreement over what constitutes quality of care. For example, in a residential care setting, the carer may be content knowing that the consumer is up at 7am every day, while the consumer may prefer to have a lie in. The relationship with provider staff plays an important role in communicating those differences and safeguarding the wishes of the consumer. There is recognition that consumers and carers should have a say in all aspects of their care, including in health care. In some instances, a carer will know more about dementia than a health professional. CDC in a home care environment is very different to CDC in a residential environment, and measures and definitions of quality and what is working must reflect this. Challenges for providers The empowerment of consumers represents a paradigm shift, as providers will become the customers of consumers. Many providers are not ready for this change. There can be resistance from the staff of providers to changes that better support consumers to make choices, as empowering consumers creates challenges for staff who will need more supports to cater to the wants and demands of consumers. There will need to be pressure on boards, governance, and regulators to provide resources to allow for care to be delivered when people are empowered. Otherwise, it will create disenchanted consumers and disenchanted staff who leave the workforce. Challenges for consumers and carers Quality in a CDC environment depends on competition and having supply exceeding demand. There will be challenges in environments where there are gaps in coverage or a limited number of providers, as can be the case in some rural and regional areas. There are challenges in terms of access, as many consumers and carers do not have the health literacy to access CDC. This is particularly acute in poorer communities. Consumers and carers cannot be empowered to choose services without the underlying knowledge to do so. Balancing considerations As the provision of services and care occurs in a complex environment, the empowerment of consumers involves trade-offs that need consideration, including:</p><p>15</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT How to balance any increased risk from consumer choices against the provider’s duty of care. For example, an activity which increases the consumer’s quality of life may also increase their risk of falls How to balance consumer wants and desires against the cost of care, given that it is a limited resource How to balance a particular consumer’s wants and desires against those of other consumers. For example, some providers of residential facilities do things that they do not want to – such as restraining consumers – as a trade off in providing service continuity, as they also need to look after other consumers in a facility. Role of education The role of education for all parties is vital. In order to include consumers in the decision making process, education and support is needed to enable them to be on boards and to support policy. These people can be drawn from a national consumer group. Education for consumers and the community about quality of life and living well with dementia is needed to reduce stigma. Reducing stigma would aid timely diagnosis, as some GPs are reluctant to recognise dementia diagnosis due to the resistance from consumers and carers. Some carers and consumers do not want to be diagnosed as there is no cure and there is an impression that a person will not be able to live their life to full capacity. The new paradigm of CDC requires education for all parties. Consumers and carers need education on their rights and responsibilities, and how to navigate this system and access services. Providers need education and support to achieve and embed the cultural change of CDC, as well as communication of successful models which is currently lacking. Education for carers is important, and is an area that is currently lacking. In order to ensure the wellbeing of carers, they require education regarding their role, what to expect, and self-care. One proposed solution is to use Massive Open Online Courses (MOOCs), for example with an ‘Understanding Dementia’ online course available for consumers, carers, the community and health professionals. Of the current education available for carers, the Living with Memory Loss course is highly valued. Collaborative decision making Collaborative or shared decision making between the consumer, carer and health professionals can help make an informed approach. However, this requires providers and health professionals to dilute their control.</p><p>2.2.3 Additional themes It is important to take a national approach to the dementia strategy, and have a vision for dementia care. Without a cohesive, nationally recognised strategy, it is hard to assess outcomes or 16</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT improvement. This strategy should be informed by continuous input from consumers and the community. Mechanisms are needed to identify good practice, give providers capacity to commercialise that good practice, and provide incentives to roll out that good practice. This will require cultural change, and the provision of tools for change. While change cannot be forced, the right incentives can be provided. There is an opportunity to capture the learnings of early adopters of CDC. Recording consultations between consumers and health practitioners, as is done by oncologists to replay at multidisciplinary meetings. This provides another structure to deliver information about the consumer.</p><p>17</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT</p><p>2.3 Group Session 3</p><p>2.3.1 Question In the context of the Analysis of Dementia Programmes Report, what objectives and outcomes would you like to see for the Government’s dementia support programmes? Thinking about the proposed outcome streams (pre-diagnosis, post-diagnosis, and progression) and service categories (advocacy and awareness raising; support services and care; education and training; and research, pilots and scoping studies): What overarching objectives and linked outcomes would you recommend? What objectives and outcomes would you like to see for each category (awareness raising, workforce training, support services and pilot studies)? What key performance indicators could measure those objectives and outcomes?</p><p>2.3.2 Key themes Philosophy of approach It was noted that the underlying philosophy of the programmes will impact the desired outcomes and objectives, and how change should be driven. There is a current class of ideologies, which differ from aged or residential care and the hospital setting. In terms of the relationship between mainstream health care and dementia, clarity is needed around what we are attempting to address – whether dementia care should be part of the mainstream, an appendix to the mainstream, or separate from the mainstream. There is currently no overarching vision on what is dementia care in Australia, and what we want it to look like. Having this would enable quality of life and measures to be linked back to this vision. The approach to dementia care needs to be based on a social as well as a medical model. Focus on the holistic rather than the particular There is an opportunity to develop nationally consistent standards and outcomes. Current models are also captive to the provided funding models, therefore there are limitations on the changes that can be made with them without also changing the nature of funding. The siloed nature of services creates challenges. It important that linkages are made between services and structural barriers are removed. It is important to provide consistent information and training, however there are issues around standardisation. Focus on outcomes Outcomes need to be considered at the levels of the consumer, the carer, the dyad, and the general population.</p><p>18</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT The health of caregivers should be included as an outcome. Currently, 50 per cent get an illness. The nature of the setting will impact implementation and outcomes. As we move into a quality system, quality indicators are needed around dementia care. In terms of research, the combination of government and philanthropic donations is a good model. Aged care providers and researchers need to be linked, and findings need to be broadly disseminated. The current quality indicators programme should include quality of life and consumer experience and be expanded to include people with dementia. Example outcomes and measures include resident aggression, goal attainment, use of antipsychotic medication, use of restraints, and consumer concerns. Information to inform the measures could be linked to the Census, or obtained from a structured survey of consumers every two years. Key performance indicators are fundamentally quality measures. They should be similar to those in health care and applied across the aged care system, while recognising that dementia care is also based on the social, as well as the medical, model of care. When developing performance indicators, it is important that they are relevant and inclusive of all consumers, including those for diverse needs. Community awareness There should be an overall objective to build a broad understanding of dementia across the community. Awareness about dementia is not a health and aged care problem, it is a whole of community concern. Building awareness should focus on how to live well with dementia and creating dementia friendly communities, given an absence of a cure. A key objective of awareness raising is to reduce stigma associated with dementia. This community awareness raising will largely need to be policy and government driven. As it was noted that many consumers are unaware of the existing advocacy services, another key objective is to make consumers and carers aware of the services that exist. There are currently some conflicts in the system around advocacy and service provision. Awareness raising should be separated from these, so that there is a forum which is focused on advice and what services are available. The MyAgedCare site could link to an online dementia course to build broader public awareness. Awareness raising could also be achieved through partnerships with various groups, such as Federal MPs, Bowls Clubs, and RSLs. Consumer empowerment Advocacy services need to become more integrated across acute, residential and home care.</p><p>19</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT Consumers and carers could be empowered to become advocates. They could also be empowered to provider ratings on providers, which is a form of self-advocacy. Consumer empowerment requires independent, quality advice, including information on the quality of services. Consumers and carers need supports to successfully navigate the system. Consumers should be empowered to remain independent, with a balance of options. Consumers and carers need to be matched to the services and supports on offer. Effective consumer choice relies on having a broad range of providers, with an open market. Consumers should be able to choose and regularly offer performance appraisals on the providers who give personal care. Quality provision There is a need to have Special Dementia Care Units for high end cases which cannot be supported within mainstream services. This was the number one recommendation from National Aged Care Alliance, and there was a related recommendation from the first Forum. Progress needs to be accelerated on this, and this programme can be achieved within the current funding envelope. This would help alleviate the pressure on the system from high end cases which cannot be supported within mainstream services and that currently have an impact disproportionate to their number. The language used to describe dementia needs to be reviewed. For example, ‘BPSD’ leads staff to believe that distress is a symptom of dementia. The term ‘behaviour management’ is also unhelpful; we suggest using ‘distress management’ instead. There should be multiple service and care options available to the consumer, beyond just residential care. Workforce development There needs to be a focus on the sustainability of the workforce, which includes whole of organisation training to embed in the organisational culture and build awareness. More research is needed into identifying the factors that are critical in successfully embedding these practices. Sustainability of the workforce is important as the best support happens in the context of consistent relationships, across all healthcare settings. More research is needed on what fosters sustainability of the workforce. The current knowledge of the workforce around dementia can be tested through the National Institute of Labour Studies National aged care workforce census and surveys. There is an opportunity to formalise a career pathway in dementia care and support across the systems. This would include at a leadership level to drive change, as well as linking dementia care to course accreditations for doctors and nurses. Such a pathway would help ensure the sustainability of the workforce. GPs are a gateway to diagnosis and care. The upcoming certification of GPs is an opportunity to include a dementia requirement.</p><p>20</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT Education The purpose of education needs to be established, and whether it relates to information about dementia, to empowerment, or both. There needs to be a consistent minimum standard regarding content, with multiple modes and methods of delivery. Current education and training is too diverse, and needs streamlining. There is a disconnect between training programmes and the willingness of organisations to implement them. Education needs to be promoted on a whole of organisation approach. Education for providers must recognise that different providers have different needs regarding dementia education, with different modes and methods depending on need. There should be a specific performance indicator around education and training, with assessment of training outcomes including evidence of understanding of theory as applied in practice with consumers. There is a gap in research concerning the effect that education and training has for the quality of life of the consumer and their carer. All care workers should undertake basic training, such as through an ‘Understanding Dementia’ MOOCs as a baseline standard. This would then be complemented with formal training (such as through the TAFE system). Research In order to have evidence based models of care, research must be translated into provider practice and widely disseminated. A national repository or clearing house of information would assist in the dissemination of this information and research. There is a need to link aged care providers with researchers.</p><p>21</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT</p><p>3 : Forum attendee organisations</p><p>The below table sets out the names of organisations of attendees at the Forum. In addition to the below list, there were participants who attended on an individual basis as consumer or carer representatives.</p><p>Organisation Organisation ACH Group Estia Health Advocacy Tasmania Hall and Prior WA Aged and Community Services HammondCare Australia Head, General Practice, University of Aged Care Guild Newcastle Aged Care Quality Advisory Council Jewish Care Victoria Alzheimer’s Australia Kincare Alzheimer’s Disease International Leading Age Services Australia Alzheimer’s Queensland Monash University Arcare QLD Metro South Health National Health and Medical Research Applied Aged Care Solutions Council National Institute for Dementia Research Australian Medical Association National Aged Care Alliance Australian Nursing & Midwifery National Seniors Australia Federation Australian Primary Healthcare Nurses NSW/ACT Dementia Training Study Association Centre Ballarat Health Services Opal Aged Care Bethanie Royal District Nursing Service Brightwater Care Group RSL Aged and Health Support BUPA Care Services Australia Salvation Army, Southern Territory Catholic Health Australia SBRTs Carers Australia St Vincent’s Health Australia</p><p>22</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT</p><p>Organisation Organisation Caulfield Hospital Synovum Care Council on the Ageing Australia UnitingCare Australia DBMAS University of New South Wales Dementia Training Study Centres University of Tasmania Department of Health Victorian Institute of Forensic Medicine ElderCare</p><p>23</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT</p><p>4 : Ministerial Dementia Forum 2015 agenda</p><p>Held 6 November 2014.</p><p>Time Agenda item Presenter/Facilitat or 10:00am – Opening Remarks Liz Forsyth 10:05am 10:05am – Introduction and setting the scene Susan Koch, Co- 10:20am Chair 10:20am – Opening address Assistant Minister 10:40am Wyatt 10:40am – Group Session 1: Setting the Liz Forsyth 10.45am scene 10:45am – Theme 1 Group Session 1 11:20am 11:20am – Feedback from Group Session 1 Liz Forsyth/Table 11:50am Captains 11:50am – Dementia Care in Hospitals Assoc Prof Mark 12:05pm Programme – Cognitive Yates Impairment Identified Symbol 12:05pm – Group Session 2: Setting the Liz Forsyth 12:10pm scene 12:10pm – Theme 2 Group Session 2 12:45pm 12:45pm – Feedback from Group Session 2 Plenary 1:15pm 1:15pm – Lunch 1:50pm 1:50pm – Group Session 3: Setting the Liz Forsyth 1:55pm scene 1:55pm – Group session 3 Theme 3 2:40pm</p><p>24</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Ministerial Dementia Forum ‘Dementia Care – Core Business’ Held on 6 November 2015 FINAL REPORT</p><p>Time Agenda item Presenter/Facilitat or 2:40pm – Feedback from Group Session 3 Liz Forsyth/Table 3:10pm – Working Afternoon Tea Captains 3:10pm – Plenary Session – Liz Forsyth 3:45pm Clarifying/refining Outcomes 3:45pm – Sue Pieters-Hawke, Closing Remarks 4:00pm Co-Chair</p><p>25</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved. The KPMG name, logo and "cutting through complexity" are registered trademarks or trademarks of KPMG International. Liability limited by a scheme approved under Professional Standards Legislation. Contact us</p><p>Liz Forsyth Health, Ageing and Human Services + 61 (02) 9335 8233 [email protected]</p><p>Ryan Czwarno Health, Ageing and Human Services + 61 (03) 9288 6865 [email protected] www.kpmg.com.au</p><p>© 2018 KPMG, an Australian partnership and a member firm of the KPMG network of independent member firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved.</p><p>The KPMG name, logo and “cutting through complexity” are registered trademarks or trademarks of KPMG International.</p><p>Liability limited by a scheme approved under Professional Standards Legislation.</p><p>April 2018</p>