SOUTH WESTERN SYDNEY DEMENTIA NETWORK SOUTH … · SOUTH WESTERN SYDNEY DEMENTIA PLAN 2007 – 2010...

SOUTH WESTERN SYDNEY DEMENTIA NETWORK

SOUTH WESTERN SYDNEY

DEMENTIA NETWORK

SOUTH WESTERN SYDNEY DEMENTIA PLAN

JULY 2007 - JUNE 2010

March 2008

SOUTH WESTERN SYDNEY DEMENTIA PLAN 2007 – 2010

ACKNOWLEDGEMENTS This Plan has been developed by the Health Services Planning Unit of Sydney South West Area Health Service on behalf of the South Western Sydney Dementia Network. This Plan is based on work undertaken by Sharon Wall of Ageing by Caring and Angela Lowman of Alzheimer’s Australia (Wingecarribee). Significant contributions to the development of this Plan have been made by network members, carers and service consumers, without whom this Plan would not have been possible. Funding for the development of this Plan was provided by the Department of Ageing, Disability and Home Care through Future Directions in Dementia Care and Support in NSW 2001 – 2006.


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TABLE OF CONTENTS

1. INTRODUCTION ...............................................................................................................2 1.1 BACKGROUND ..................................................................................................................... 2 1.2 WHAT IS DEMENTIA? ........................................................................................................... 2 1.3 SCOPE OF THE SWS DEMENTIA PLAN .................................................................................. 3 1.4 THE PLANNING PROCESS .................................................................................................... 3

2. THE POLICY FRAMEWORK............................................................................................5 2.1 THE NATIONAL FRAMEWORK FOR ACTION ON DEMENTIA 2006 - 2010 ................................... 5 2.2 FUTURE DIRECTIONS FOR DEMENTIA CARE AND SUPPORT IN NSW 2001 – 2006................... 5 2.3 NSW CARERS ACTION PLAN 2007 – 2012........................................................................... 6

3. THE VISION FOR DEMENTIA CARE AND SUPPORT IN SOUTH WESTERN SYDNEY7 3.1 VISION ................................................................................................................................ 7 3.2 OBJECTIVES........................................................................................................................ 7

4. DEMENTIA IN THE SOUTH WESTERN SYDNEY COMMUNITY ....................................9 4.1 YOUNGER PEOPLE WITH DEMENTIA.................................................................................... 10 4.2 ABORIGINAL AND TORRES STRAIT ISLANDER PEOPLE.......................................................... 11 4.3 PEOPLE FROM CULTURALLY AND LINGUISTICALLY DIVERSE BACKGROUNDS ......................... 11 4.4 PEOPLE WITH AN INTELLECTUAL DISABILITY AND DEMENTIA................................................. 11 4.5 CARERS............................................................................................................................ 12 4.6 PREVENTION, TREATMENT AND CURE................................................................................. 12

5. THE DEMENTIA SERVICE SYSTEM IN SOUTH WESTERN SYDNEY.........................13 5.1 COMMUNITY EDUCATION SERVICES.................................................................................... 13 5.2 DIAGNOSTIC SERVICES...................................................................................................... 13 5.3 INFORMATION AND REFERRAL SERVICES ............................................................................ 13 5.4 COUNSELLING SERVICES (AT CRITICAL STAGES)................................................................. 14 5.5 SUPPORT GROUPS............................................................................................................ 14 5.6 COMPREHENSIVE ASSESSMENT AS NEEDS CHANGE............................................................ 14 5.7 CASE MANAGEMENT.......................................................................................................... 15 5.8 BEHAVIOURAL SUPPORT SERVICES .................................................................................... 15 5.9 RESPITE SERVICES ........................................................................................................... 15 5.10 HOSPITAL SERVICES ......................................................................................................... 16 5.11 TRANSITIONAL AGED CARE SERVICES................................................................................ 16 5.12 COMMUNITY SUPPORT SERVICES....................................................................................... 16 5.13 PALLIATIVE CARE SERVICES .............................................................................................. 17 5.14 GENERAL PRACTITIONERS ................................................................................................. 17 5.15 RESIDENTIAL AGED CARE SERVICES .................................................................................. 17 5.16 COMMUNITY PARTICIPATION SERVICES .............................................................................. 17 5.17 EDUCATION/TRAINING FOR FAMILY/CARERS ....................................................................... 17 5.18 EDUCATION/TRAINING FOR WORKFORCE............................................................................ 18

6. CARE AND SUPPORT ...................................................................................................19 7. ACCESS AND EQUITY...................................................................................................21 8. INFORMATION AND EDUCATION ................................................................................22 9. RESEARCH ....................................................................................................................23 10. WORKFORCE AND TRAINING......................................................................................24 11. COMMUNICATION STRATEGY.....................................................................................25 12. ACTION PLAN AND PLAN IMPLEMENTATION ...........................................................26 13. APPENDICES ...................................................................................................................38

APPENDIX A: LIST OF ABBREVIATIONS................................................................................... 38 APPENDIX B: REFERENCES ..................................................................................................... 39


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1. INTRODUCTION

1.1 Background Living with dementia or caring for a person with dementia is a significant challenge. This challenge is compounded by the complex nature of dementia and of the service system which aims to support people with dementia and their carers. At present, dementia services are funded by both the Australian and State Government, along with charitable institutions. Services are provided by a range of different organisations in the government and non-government sector, as either for profit or not for profit providers. These services cross the residential, acute (hospital) and community settings.

In recognition of this complexity, the second NSW Dementia Plan, Future Directions in Dementia Care and Support 2001 – 2006, provided funding for the development of Local Service Planning and Dementia Network projects across NSW. This funding was administered by the Department of Ageing, Disability and Home Care (DADHC). Project funding was non-recurrent and ceased at the end of 2005/06. The intent of these projects was to bring together local providers of community, acute and residential care services for people with dementia in a collaborative way to improve the way services to people with dementia and their carers are delivered. In doing this there was an expectation that all available services would be mapped (using a standard template provided by DADHC) and that a Plan would be developed to facilitate improved service delivery. In addition, ongoing benefits would be achieved through improved communication and collaboration.

In South Western Sydney (Bankstown, Fairfield, Liverpool, Campbelltown, Camden, Wollondilly and Wingecarribee Local Government Areas), two such projects were funded. Alzheimer’s Australia was funded for Wingecarribee and the former South Western Sydney Area Health Service for the remainder of South West Sydney (SWS). Since the allocation of project funding both Alzheimer’s Australia in Wingecarribee and Area Health Service (AHS) for the remainder of SWS the following have been achieved:

− local service provider networks have been established; − extensive consultation has occurred in order to understand community needs and

priorities; − all available services have been mapped and the mapping documents (see the

attachment) have been widely circulated. Systems to update the mapping have been developed; and

− draft plans have been developed.

In 2007 it was determined through consultation between Alzheimer’s Australia and the new Sydney South West Area Health Service, that it was essential to develop and release a single South Western Sydney Dementia Plan, under the auspices of the South Western Sydney Dementia Network (SWSDN). This Plan is therefore a culmination of work since 2002, facilitated by both organisations and covers the 7 Local Government Areas (LGAs) of South Western Sydney.

1.2 What is Dementia? Dementia is the term used to describe the symptoms of a large group of illnesses which cause a progressive decline in a person’s functioning. It is a broad term used to describe a loss of memory, intellect, rationality, social skills and what would be considered normal emotional reactions (Alzheimer’s Australia, 1999). The most common of these diseases is Alzheimer’s Disease. Other causes of dementia include vascular dementia, Pick’s


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Disease, Lewy Body Disease, AIDS Dementia Complex, Alcohol related Korsakoff's disease and Downs Syndrome. The World Health Organisation's International Classification of Diseases (1992) describes dementia as:

"A syndrome due to disease in the brain, usually of a chronic or progressive nature, in which there is impairment of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language and judgment. Consciousness is not clouded. The cognitive impairments are commonly accompanied, and occasionally preceded by, deterioration in emotional control, social behaviour or motivation. This syndrome occurs in Alzheimer's disease, in cerebrovascular disease and in other conditions primarily or secondarily affecting the brain."

Sometimes a person may appear to have dementia but rather has a reversible condition such as delirium, depression, or a form of post traumatic stress disorder. As such, it is essential that people experiencing cognitive impairment are referred to a medical practitioner for diagnosis and treatment, if possible.

1.3 Scope of the SWS Dementia Plan The SWS Dementia Plan has been developed by the South Western Sydney Dementia Network (SWSDN) to address collaboratively issues associated with dementia care and support across the region. The Plan is not owned by any single organisation or agency, but is rather a general plan for the region which is to be collaboratively implemented, through the leadership of the SWSDN.

The Plan provides: • A description of scope of demand for dementia services in SWS, now and in the

future; • A vision for the future of dementia care and support in SWS, along with a set of

objectives which detail how the vision will be achieved; • A brief introduction to the current service system available for people with dementia

and their carers in SWS; • A description of the current service gaps and issues; and • An action Plan to assist the SWSDN to achieve the vision over the period 2007 –

2010.

1.4 The Planning Process Preliminary work on the development of a SWS Dementia Plan commenced in 2004/05 when extensive consultation with consumers, carers and service providers was undertaken as part of a consultancy being undertaken by Ageing by Caring Pty Ltd. The consultancy was funded by the Department of Ageing, Disability and Home Care (DADHC) through the abovementioned Local Planning and Service Development Project.

The consultation was facilitated by the production of a background information paper, providing general information on dementia and the dementia service system in South Western Sydney. Service providers, carers and community representatives, including those from specific language groups within South Western Sydney, were consulted through a program of forums. The results of these consultations have been recorded and used to input into the current plan. In 2007, a comprehensive analysis of the current service system was undertaken through the dementia services mapping exercise (See Attachment). The mapping has been


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reviewed by the newly established South Western Sydney Dementia Network (SWSDN). A workshop with the SWSDN was also held in June 2007 to finalise and prioritise issues for consideration in the Plan. The draft South Western Sydney Dementia Plan has been developed by Sydney South West Area Health Service on behalf of the South Western Sydney Dementia Network. A copy of the draft was circulated to SWSDN members for review and comment in August 2007.


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2. THE POLICY FRAMEWORK The following sections provide a brief summary of the policy framework surrounding dementia in Australia and NSW.

2.1 The National Framework for Action on Dementia 2006 - 2010 The National Framework for Action on Dementia (NFAD) 2006 – 2010 (Australian Health Ministers Conference 2006) has been developed in recognition of dementia as a national health priority. The NFAD has been developed collaboratively between all Australian States and sets a framework to create a strategic, collaborative and cost-effective response to dementia across Australia.

The Framework has a vision of “a better quality of life for people living with dementia and their carers and families”. A set of objectives and principles underpin this vision and give context to the range of strategies and actions outlined in the Plan.

The vision will be achieved through work focussed around five priority areas, being:

1. Care and support; 2. Access and equity; 3. Information and education; 4. Research; and 5. Workforce and training.

Funding at both a national and state level is available to implement actions under each of these priority areas. Release of this funding is phased over the life of the respective plans.

2.2 Future Directions for Dementia Care and Support in NSW 2001 – 2006

Known as “Future Directions” this was the second Dementia Action Plan for NSW. Funding of $11.043 million was provided by the NSW Government to support the implementation of this plan across the State. The overall objective of Future Directions was to “maintain the dignity and enhance the quality of life of people living with dementia in NSW”. The objective was underpinned by a set of goals and principles, which again give context to the actions and strategies included within. Future Directions was designed around 7 Focus Areas, being:

1. Policy and planning; 2. Supportive and inclusive communities; 3. Diagnosis, assessment and management; 4. Education and training; 5. Community support services; 6. Acute care; 7. Accommodation options; and 8. Protection of rights and interests

“The multiple constraints and boundaries placed by funding bodies generally thwart our greatest potential” (Consultation Comment)


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Future Directions has had many achievements in NSW including: • The development of additional community based services for people with

dementia; • The establishment of local dementia service and planning networks across the

state; • Increased awareness of dementia in the general community; • New educational resources for people with dementia and their carers, as well as

for health professionals NSW Health is currently in the process of developing the third NSW Dementia Action Plan. This third plan will be developed to be consistent with the NFAD priority areas. Key actions over the period 2007 – 2009 will be identified. At July 2007, this plan is not available for release.

2.3 NSW Carers Action Plan 2007 – 2012 The NSW Carers Action Plan 2007 – 2012 (NSW Department of Health, 2007a) outlines a whole of government policy commitment to recognising and supporting carers. The plan sets out the following vision:

The NSW Government will contribute to carers achieving quality of life for themselves and the people they support. In the context of their caring role, carers will be: • Supported to achieve physical and emotional wellbeing and to participate in work and community life; • Valued as key contributors to community wellbeing and as key partners and providers of care; • Considered in the development of public policy in NSW. Priorities for action identified within the plan are:

1. Carers are recognised, respected and valued; 2. Hidden carers are identified and supported; 3. Services for carers and the people they care for are improved; 4. Carers are partners in care; and 5. Carers are supported to combine caring and work

A range of actions have been identified under each of these priority areas. NSW Health has provided funding to establish the NSW Health Carers Program within each Area Health Service and is requiring each AHS to develop a Carers Plan. SSWAHS is developing a Carers Plan with a target date of March 2008. This plan will set the agenda to 2012 in Sydney South West.


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3. THE VISION FOR DEMENTIA CARE AND SUPPORT IN SOUTH WESTERN SYDNEY

3.1 Vision The following statement outlines the vision of the South Western Sydney Dementia Network to 2011 and beyond.

To improve the quality of life for people with dementia and their carers in South Western Sydney by promoting inclusiveness and providing a service system which is capable of responding to the diversity of needs in our local

community.

3.2 Objectives The objectives of the South Western Sydney Dementia Plan 2007 - 2010 have been developed to be consistent with the policy direction of the National Framework for Action on Dementia and the Draft NSW Dementia Plan. These plans have identified five key priority areas for action which are fundamental to improving the quality of life of people with dementia, their families and carers. These priority areas are: care and support; access and equity; information and education; research; and workforce and training.

Care and Support

To continuously improve service provision, coordination, integration and referral pathways within and between the acute care, residential care and community support services for people with dementia and their carers;

To support General Practitioners in the diagnosis and management of dementia, along with the provision of ongoing, holistic care to people with dementia and their carers;

To improve the care and support of people with dementia and their carers during a hospital stay;

To increase the availability of dementia specific community services; To increase the availability of dementia specific residential care services; To work and plan collaboratively to plan for the growth in services required to meet the

needs of people with dementia and their carers

Access and Equity To improve the responsiveness of the service system to the needs of Aboriginal

people with dementia and their carers; To improve the responsiveness of the service system to the needs of people from

Culturally and Linguistically Diverse backgrounds with dementia and their carers To improve the responsiveness of the service system to the needs of people with an

Intellectual Disability and dementia and their carers; To improve the responsiveness of the service system to people with dementia aged

under 65; To improve the responsiveness of the service system to people with dementia who live

alone; To improve the responsiveness of the service system to carers of people with

dementia; To ensure that the needs of people with dementia and their carers are included in

future developments and plans.


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Information and Education To improve awareness and understanding of dementia in the local community; To provide accessible and practical information to carers of people with dementia to

support them in their caring role.

Research To participate in research into issues associated with dementia and the care and

support of people with dementia and their carers, which leads to improved services and improved outcomes;

To make research results accessible to the dementia workforce and carers.

Workforce and Training To increase the number of community, acute and residential care workers who are

trained in dementia care and support; To support recruitment and retention and develop career pathways in dementia care,

to provide expertise and long term options for staff.


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4. DEMENTIA IN THE SOUTH WESTERN SYDNEY COMMUNITY

The prevalence of dementia in the community is increasing in line with the ageing of the population. Access Economics (2005) has estimated that the prevalence of dementia in NSW will increase from 62,680 in 2001 to 110,310 in 2020. Further, Access Economics has developed dementia projections for each Area Health Service in NSW. In Sydney South West, Access Economics estimate that the prevalence of dementia in 2006 is 11,419 people, increasing to 15,872 people by 2016. This is an increase of 4,453 people or 39%. Using these estimates, along with population projections provided by the former Department of Infrastructure, Planning and Natural Resources in 2004, the following dementia prevalence rates (at 2006 and at 2016) have been estimated for South Western Sydney in 2006 and 2016. Table 4.1 Estimated Dementia Prevalence Rates in South West Sydney 2006 & 2016 Age 2006 Estimated

Prevalence 2016 Estimated

Prevalence Actual

Change % Change

0-59 71 76 4 6%60-64 312 433 120 38%64-69 400 632 232 58%70-74 729 1,012 283 39%75-79 1,105 1,310 205 19%80-84 1,599 1,861 263 16%85+ 2,295 3,681 1,385 60%Total 7,103 9,874 2,771 39%

Source: Access Economics 2005 and DIPNR Population Projections 2004 The incidence of dementia overall is also projected to increase over the next 10 years across SSW, with the estimated annual incidence in 2006 at 3,169, rising to 4,245 by 2016 (Access Economics 2005). This equates to an additional 1,076 people being diagnosed with/developing dementia each year. Assuming that 62% of SSWAHS residents reside in SWS, it can be estimated that in SWS in 2006 there are 1,964 new cases of dementia each year, which will increase to 2,632 by 2016. This is an additional 668 cases per year on current estimates. Figure 4.1 Projected Prevalence and Incidence of Dementia in SWS 2001 – 2016

02,000

4,0006,000

8,00010,000

12,000

Year

Num

ber o

f Peo

ple

Prevalence 7,103 9,874

Incidence 1,964 2,632

2006 2016

Source: Access Economics 2005


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Figure 4.1 above shows the projected incidence and prevalence of dementia in SWS to 2016. The increased survival rates are likely as a result of early and correct diagnosis and symptomatic medical therapies, along with the treatment of co-morbid illnesses. This new regime of treatment results in a cohort of people with unique care needs across a longer life span. Table 4.2 (following) is adapted from Brodarty (2003) to demonstrate the service delivery model and estimated number of people in south western Sydney experiencing behavioural and psychological symptoms of dementia (BPSD). It highlights the need for a range of service delivery options and the provision of care and respite in often challenging situations. Table 4.2 Estimated Prevalence of Behavioural and Psychological Symptoms of

Dementia (BPSD)

Tier *

BPSD * Management * % of People * (Model)

2006 Estimated

Prevalence (SWS)

2016 Estimated

Prevalence (SWS)

7 Dementia with extreme BPSD (eg physical violence)

Management in intensive specialist care unit

No rate given

6 Dementia with very severe BPSD

In psychogeriatric or neurobehavioural units

Less than 1%

71 99

5 Dementia with severe BPSD

Dementia-specific nursing homes, or case management under specialist teams

10 710 987

4 Dementia with moderate BPSD

Specialist consultation in primary care

20 1,421 1,975

3 Dementia with mild BPSD

Primary Care Workers 30 2,131 2,962

2 Dementia with no BPSD

Selected prevention 40 2,841 3,950

Estimated Total Number of People with Dementia (SWS)

100 7,103 9,874

* Brodarty H et al (2003) “Behavioural and psychological symptoms of dementia: a seven-tiered model of service delivery in MJA 178: 231-234

4.1 Younger People with Dementia Younger people with dementia are defined as those people under the age of 65 with any form of dementia. The term ‘early onset dementia’ is also used to describe this group. Dementia in younger people is much less common than dementia occurring after the age of 65. For this reason it can be difficult to diagnose and its incidence in the community is still not clear. However, Access Economics (2005: 23) estimate that in Sydney South West Area Health Service in 2007 there are 652 people under the age of 65 living with dementia. Given that 62% of SSWAHS residents in this age group live in South Western Sydney, it is estimated that there are 400 younger people with dementia currently living in SWS. This figure includes children, who may also experience dementia, although it is very uncommon. Younger people with dementia may have different physical and psychological needs to older people. For example, younger people with dementia may still be involved in


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employment (at least initially) and have a range of financial and family responsibilities. Further, they are often stronger, healthier and more active than their older counterparts. Specialised services are required to support younger people with dementia, particularly in the early stages of their disease progression.

4.2 Aboriginal and Torres Strait Islander People There is currently little information on the prevalence of dementia in Aboriginal and Torres Strait Islander people (herein referred to as Aboriginal people) in Australia. What is known is that Aboriginal people have a shorter life expectancy than the general population, and given that age is the greatest risk factor for the development of dementia, there may be an associated lower prevalence rate in Aboriginal people. However, high rates of vascular disease, mental health problems and alcohol/drug abuse may also increase the prevalence of dementia in Aboriginal people, including those of younger ages. Further studies are required to project more accurately the prevalence of dementia in Aboriginal people. If the same prevalence rate is assumed for Aboriginal people as for the rest of the population, it could be estimated that there are currently 20 Aboriginal people in South West Sydney living with a dementing illness. However, this assumption is unfounded. Dementia in Aboriginal people may be compounded by other physical and mental health problems, along with cultural attitudes towards dementia and the accessibility of diagnostic and/or support services.

4.3 People from Culturally and Linguistically Diverse Backgrounds

There is currently no accurate data regarding the prevalence of dementia for language specific CALD groups. As indicated in the Access Economics 2006 report, 1 in 8 Australians with dementia do not speak English at home that is 12.9% of Australian people with Dementia in NSW. As a higher proportion of people who do not speak English at home reside in Sydney South West this will result in a higher percentage of CALD people with dementia in this region. Also a range of factors including past history, migration and settlement issues may influence the incidence and prevalence of dementia. South Western Sydney is the most culturally diverse community in Australia, and is home to a high number of refugees or humanitarian arrivals since the introduction of postwar migration to Australia. According to the 2001 census, approximately 311,000 people in SWS spoke a language other than English at home. This is 39% of the total SWS population. Older people from CALD backgrounds, even if they have acquired English language skills, are known to revert to their first language as their dementia progresses. In some instances, this will be a language that their family does not speak. People who have experienced trauma or torture, such as refugees or people with refugee like backgrounds, are also likely to experience flashbacks to traumatic situations and events, these memories can often resurface as a result of the dementia. The effect of language regression for these people will make it much more difficult to communicate their feelings and needs thus making it difficult for service providers to understand or manage them.

4.4 People with an Intellectual Disability and Dementia ”Age related” health concerns start to occur in people with an intellectual disability from age 35 to 40, which is much earlier than seen in the general population.


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According to research by Janicki and Dalton (1999) people with Downs Syndrome over the age of 35 display brain formations similar to those seen in people with Alzheimer’s disease. Whilst not all of these people will go on to develop dementia there does appear to be a strong correlation between the two. Because of a range of complexities and co-morbidities which a person with an intellectual disability may experience, dementia can often go undiagnosed.

4.5 Carers According to the 2003 Survey of Disability, Ageing and Carers (SDAC) in NSW in 2003 there were approximately 748,000 carers (11% of the total population). Over 149,700 people identified themselves as Primary Carers (2.3% of the total population). Carers tend to be female, and the majority are aged over 45. People with dementia often rely on carers to provide for their day to day needs. These carers are usually a spouse/partner or child. In the 2003 SDAC, the main reasons carers cited for providing such a role were that they could provide better care than alternatives (such as residential care), or the carer had a sense of family responsibility/emotional obligation. Further, the following were major effects on the physical and emotional health of carers: feeling weary/lack of energy; loss of well-being; worry and/or depression. Others reported that the caring role provided them with satisfaction.

4.6 Prevention, Treatment and Cure At July 2007, the cause of most dementias remains unknown and a cure has not yet been found. However, there are positive steps being taken towards the development of improved treatment options and research into a cause and cure is ongoing, both in Australia and internationally. Possible options to prevent or delay the onset of Alzheimer’s Disease include the use of non-steroidal anti-inflammatory drugs and hormone replacement therapy. Keeping the mind active is also promoted as being beneficial. Other dementias, such as vascular dementia or AIDS dementia complex, may be prevented through lifestyle or other changes. Healthy lifestyles include exercise, maintaining a healthy diet, and ensuring social contacts not only prevent or delay these dementias but also prevent depression. Pharmacological treatment is available which slows the symptoms of Alzheimer’s disease and may improve functioning. Early diagnosis is crucial to the effectiveness of such treatment.


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5. THE DEMENTIA SERVICE SYSTEM IN SOUTH WESTERN SYDNEY

Mapping of the dementia service system in South Western Sydney was undertaken in 2004/05 and again in 2006/07. A copy of the current service map is provided as an attachment. The service map is presented using a standard state-wide template provided by the Department of Ageing, Disability and Home Care, which identified particular service types and target groups on which to collect and report information. The following sections are presented in accordance with this Service Mapping template. A brief description of services available is provided, along with a summary of issues associated with these service types.

5.1 Community Education Services Community education services are those general services or programs provided to the broader community on dementia. In brief: • There is no coordinated system of community education on dementia in SWS,

although various organisations offer such a service in conjunction with their primary activities. Strong partnerships have been established between certain stakeholders to develop and deliver collaborative education/information sessions;

• Dementia Advisory Services (DAS) in Bankstown/Liverpool/Fairfield, Macarthur and Wingecarribee undertake a range of community education initiatives on both a planned and ad hoc basis. In partnership with other services, including the Alzheimers Association, they are active in Dementia Awareness Week, Carers Week and Seniors Week activities;

• Occasionally information sessions are held for specific language or cultural groups, with the assistance of interpreters as required;

• There are a variety of resources available which have been produced by various organisations and agencies, however access to these resources is variable and is dependent on a range of factors such as internet access;

• There is a need to increase awareness of dementia in public contact staff eg. pharmacies, banks, Councils and with the police. The Centre for Education and Research on Ageing (CERA) has been involved in the development of systems and resources for public contact staff but this has not been widely disseminated.

5.2 Diagnostic Services Diagnostic services are essential to effective treatment for dementia and to facilitate access to care and support services. In brief: • Diagnostic services are provided by either General Practitioners (GPs) or

Geriatricians/Psychogeriatricians through either the inpatient system or outpatient clinics;

• Memory Clinics are located at Bankstown and Liverpool Hospitals.

5.3 Information and Referral Services Information and Referral services are those services which facilitate access to general information about dementia or dementia care and support, as well as facilitating referral to the most appropriate services. In brief: • Commonwealth Carelink Centres (CCC) is funded to provide information on and

referral to services for older people, people with a disability and their carers. CCC holds a database of all available services for people with dementia in SWS, which needs to be kept constantly updated;


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• Local Councils often provide service directories to assist people in their local Area to access the services they need;

• In Macarthur, the Macarthur Information and Referral Service is supported by the HACC Development Project;

• There is no single point of access into the dementia service system. People may be introduced to the service system through community, hospital or residential care services. This diversity of access points creates confusion for carers and service providers

• Sydney South West Area Health Service is in the process of developing a website with information about the current services available for older people across the Area.

5.4 Counselling Services (at Critical Stages) • There are limited formal counselling services available for people with dementia and

their carers in SWS, (particularly at critical stages), although services report provision of a high degree of informal counselling through their regular client contact;

• There is no formal referral point for counselling services for people with dementia and their carers in SWS;

• There is limited, if any capacity, to provide long term counselling; • People with dementia and their carers are generally referred to the Alzheimer’s

Australia NSW or Carers NSW Helplines, or services, for counselling. This is due to both their expertise and a lack of locally based services.

5.5 Support Groups • There are currently no mainstream support groups for people with a diagnosis of

dementia in SWS. SLASA and the Ethnic Aged Health Adviser conducted two groups of the LWML program for Spanish speaking community

• There are various dementia carer support groups for the carers of people with dementia which operate across SWS including those facilitated by community services such as the Macarthur Dementia Advisory Service and through residential care. There is also a drop-in centre which operates one/month at Broughton House for the care recipient and the carer;

• Some dementia carer support groups are generalist, whilst others, such as the one coordinated by the Polish Welfare Information Bureau, are focussed on the needs of a particular language or cultural group;

• There are additional general carer support groups in SWS, which are open to all carers, not just carers of people with dementia;

• Carer support groups can be difficult to access depending on the venue from which they are provided and the time they are held. For example, working carers often experience access barriers. Access to respite can also be a problem;

• There is a need to have a ‘facilitator/coordinator’ to ensure the sustainability of carer support groups.

5.6 Comprehensive Assessment as Needs Change • Aged Care Assessment Teams provide comprehensive assessments and identify the

care and support needs of frail older people and people with dementia and their carers. Contact is made through a central contact number. Clients assessed are referred to a range of community and health services for further assessment and/or service. Clients and community and other service providers are asked to contact ACATs when their needs change so that the person can be assessed.

• Specialist Mental Health for Older People (SHMOP) provide comprehensive assessments, particularly for people with challenging behaviours, and carer and support needs;


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• Detailed clinical assessment and management of dementia across the area is variable. In some parts of SWS there are specialist dementia/memory clinics, in other parts of the area, there are general clinical services with less specialist input.

5.7 Case Management • Case management services for people with dementia and their carers are available

across the Area, although the level and type of case management offered may differ; • Community Options (COPS) programs provide formal case management for people

with complex needs, who are at risk of premature or inappropriate admission to a residential care facility. COPS programs have extensive waiting lists;

• Aged Care Assessment Teams (ACATs) provide case coordination but are not funded to provide a formal, ongoing case management service;

• There is minimal case management provided by all residential and community care services, at least within the context of that individual service;

• DADHC disability services provide case management for people with a disability and dementia, for eligible clients;

• Community Aged Care Packages (CACPs) and Extended Aged Care Packages (EACH) provide packaged care and incorporate significant case management. EACH Dementia packages also help older people experiencing behaviours of concern and psychological symptoms associated with dementia.

5.8 Behavioural Support Services • Alzheimer’s Australia NSW Helpline is able to provide phone based behaviour support

and information. Information packages are also available on the Alzheimer’s Australia website;

• Inpatient Psychogeriatric units are available at Bankstown and Braeside Hospitals. These inpatient units cater for people with severe behavioural and psychological symptoms of dementia (BPSD). Planning has commenced for a similar unit as part of the Liverpool Hospital Stage 2 redevelopment;

• Within “Southwood”, Hammond Care will operate a Special Care Program (SCP), consisting of an 8-place Special Care Unit and 8 place Supported Internal Relocation Program for older people with severe behavioural and psychiatric symptoms associated with dementia or organic brain impairment. SCP clients will receive specialist consultation-liaison support from SSW Mental Health Service Specialist Mental Health Services for Older People (SMHSOP);

• Specialist Behavioural Assessment and Intervention Services (BASIS) and Dementia Behavioural Management and Assessment Services (DBMAS) are being developed and integrated into Mental Health Services operated under SMHSOP;

• Outpatient medical services provided by Geriatricians and Psychogeriatricians are available to assist with assessment and treatment, including the prescription of medication and implementation of behaviour management techniques;

• Some community services, such as the Hammond Care dementia respite program for carers of people with challenging behaviours, also provide behavioural support

5.9 Respite Services • There are a wide variety of respite services available for people with dementia and

their carers in SWS. Services are provided by the non-government sector and SSWAHS;

• Respite options include residential respite (high or low care); a respite cottage (Carrington Centennial Care); in-home respite and centre based day care;

• Limited centre based day care is available out of hours ie. weekends, evenings;


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• Some parts of the area ie Liverpool has no centre based day care; • The majority of respite is provided on a planned basis, although the Commonwealth

Carer Respite Centre can also arrange emergency respite; • There are limited multicultural dementia respite services available; as well as some

culturally/language specific services; general and dementia specific and language specific centre base respite continues to be on high demand and is a high priority at the CALD/HACC consultation;

• There are some respite services specifically for carers of people with dementia and/or challenging behaviours. Several services assist with the assessment and management of older people with dementia eg ACATs and SMHSOPs. These services link with other community dementia specific support services such as CACPs, EACH, dementia respite, Dementia Day Care and Dementia Monitoring to ensure that management plans are implemented.

• There is demand for additional respite services and greater flexibility in existing respite services. This demand is not only reflected by new carers seeking respite, but also by existing carers who request more respite as the care needs for the person with dementia increases.

5.10 Hospital Services • Hospitals in South Western Sydney include Bankstown, Fairfield, Braeside, Liverpool,

Campbelltown, Camden, and Bowral & District; • All hospitals provide acute/sub-acute care for people with dementia, although there is

limited specialist dementia care capacity at each site; • Inpatient specialist mental health services for older people (SMHSOP) are available

currently at Braeside Hospital. Planning has commenced for an inpatient unit at Liverpool Hospital as part of the Stage 2 redevelopment;

• A number of clinical nurse consultant positions are involved in consultancy, education, and research, as well as in the assessment, care and management of consumers with dementia, and support to their carers. A temporary Dementia Clinical Nurse Consultant (CNC) is based at Bankstown Hospital and Aged Care CNC positions are located at Liverpool, Campbelltown, and Bowral & District Hospitals;

• Agedcare Service Emergency Teams (ASET) are based at Bankstown, Fairfield, Liverpool and Campbelltown Hospital Emergency Departments (EDs). These services aim to treat older patients quickly on presentation to ED, prevent avoidable hospital admissions through appropriate referral to community services and identify and manage behavioural issues that arise in ED.;

5.11 Transitional Aged Care Services • SSWAHS has recently commenced the provision of a Transitional Aged Care Program

(TACP) which provides short term community based rehabilitation and support to people post-discharge from hospital;

• To be eligible for TACP the client must demonstrate the capacity to improve their functionality over a 12 week period;

• To date, there has been variable success for people with dementia on the program. People with lower levels of cognitive impairment have demonstrated the ability to make progress.

5.12 Community Support Services • There is a wide range of community support services available for people with

dementia in SWS, although in the main they are targeted at all people who are frail aged or have a disability eg. personal care, meals on wheels, community transport;

• Government funded home based therapy services are available for some clients;


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• There is variable availability of and access to community support services across SWS. Different eligibility criteria may apply to different programs;

• Private services are available to supplement government funded services, for those who can afford to pay.

5.13 Palliative Care Services • SSWAHS provides an inpatient and community based Palliative Care Service across

SWS. Inpatient units are located at Braeside and Camden Hospitals and are supported by community palliative care teams that are linked to the community nurse teams;

• SSWAHS is currently undertaking a range of projects, in conjunction with RACFs, on advanced care planning and the implementation of Advanced Care Directives.

5.14 General Practitioners • There are currently 5 Divisions of General Practice within South Western Sydney –

Bankstown, Liverpool, Fairfield, Macarthur and Southern Highlands. Most GPs are members of a Division of General Practice;

• In 2005, it was estimated that there were 832 GPs in SWS; • The distribution of GPs to population is variable across SWS, with Liverpool having a

GP: population ratio of 1:1,602 ranging to Bankstown at 1:1,107; • Estimates indicate approximately 30% of GPs also speak a language other than

English.

5.15 Residential Aged Care Services • Of the 59 residential facilities in the area, there are currently 12 residential aged care

facilities in SWS offering dementia specific services. These facilities provide approximately 293 high care beds and 280 low care beds;

• Residential respite is limited, with approximately 8 high and low care designated dementia specific residential respite beds currently available across SWS.

• Mainstream residential aged care facilities also cater for people with dementia, although they do not offer specific services or infrastructure, such as secure units;

• There is a lack of dementia specific residential aged care within South Western Sydney, especially for people with severe BPSD.

5.16 Community Participation Services • There are minimal community participation services to assist people with dementia to

engage in mainstream social, leisure and physical activities. Most activities are designed for groups of people with dementia e.g. bus trips;

• Some mainstream frail aged services which cater for people with dementia provide socialisation opportunities e.g. shopping trips;

• Some residential aged care facilities, particularly low care, offer opportunities for people with dementia to participate in community activities e.g. church outings.

5.17 Education/Training for Family/Carers • Alzheimer’s Australia offers a Living with Memory Loss course for people with a

diagnosis of early stage dementia and their family/carers. These courses have been conducted in Bankstown and Macarthur and Wingecarribee. Local Dementia Advisory Services also conduct education sessions in the community often in tandem with the Alzheimer’s Association;

• All three Dementia Advisory Services (DAS) have a library of dementia resources which can be accessed by family/carers. This is supported by general information provided on the internet and in local libraries;


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• Hospital and residential aged care services offer informal education for family and carers within the overall context of the services they offer;

5.18 Education/Training for Workforce • In-house training on dementia and dementia care is delivered within many residential

and community care services; • Specific self-paced training resources have been developed to train GPs in the

diagnosis and management of dementia. It is unknown how many GPs in SWS have made use of these resources;

• The Wingecarribee DAS is funded to provide formal education and training for the workforce in residential, acute and community settings (including with GPs) within the local area. Education sessions are also provided to aged care/community care students attending the local TAFE;

• All the Dementia Advisory Services coordinate local education/training opportunities for staff of all services to reduce duplication and improve the cost effectiveness of delivering training on the urban fringe;

• In addition to DASs there are other staff from inpatient and community settings that provide information and education to community based and residential services;

• The Liverpool/Fairfield/Bankstown Training and Education Working Party has been re-established under the umbrella of the SWS Dementia Network.


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6. CARE AND SUPPORT Care and support is of primary importance to people with dementia and their carers/families. This includes the care and support provided in the community, acute and residential settings. The SWSDN identified the following issues in relation to dementia care and support: • Carer Support – carers report a high level of stress associated with the caring role.

There is a need to provide a range of services to support carers and for these to be delivered in a flexible manner which meet the unique needs of the carer, through all stages in their journey;

• Differing Needs of Carers – there is a need to acknowledge that the needs of carers will change over time. For example existing carers will require more respite as the care needs for the person with dementia increase if they are to prevent the person with dementia entering full care. Equity needs to also be considered;

• Lack of service coordination/integration (communication) – service providers and recipients report a lack of coordination/integration between services which results in duplication of effort or in people ‘falling through the gaps’ in the service system;

• Services for people with end stage dementia/palliative care – enhanced services are required to support people in their end stage of life, in both community and residential environments;

• The availability of carer respite (including emergency respite) – there are insufficient carer respite service available to meet growing demand, particularly for emergency respite;

• The availability of dementia specific centre based day care – there is insufficient capacity within existing centre based day care services to meet demand, and there is no dementia day care facility in Liverpool to meet current and future demand. Carers incorrectly believe that access to day centre respite is only via an ACAT assessment;

• The need for improved service flexibility – greater service flexibility is required to cater for the unique circumstances of each client. For example, working carers, carers who are frail elderly themselves;

• Lack of residential aged care for people with challenging behaviours – it can be difficult to appropriately place people with challenging behaviours in residential care facilities;

• The need for additional dementia case management services – there is insufficient capacity within existing case management services to meet demand;

• The need for additional dementia monitoring services – there is insufficient capacity within existing dementia monitoring services to meet demand and services are not available equitably across SWS.

• The need for improved capacity for diagnosis and assessment - improvements in the way in which dementia is diagnosed and assessed are required to increase the rate of early diagnosis and treatment;

• Lack of dementia specific residential aged care, including respite - there is insufficient capacity within residential aged care services to meet demand and services are not available equitably across SWS;

• The need to improve dementia care in mainstream services – improved care for people with dementia in mainstream aged care services will reduce the demand on dementia specific services for people with low needs;

• Improved dementia care and services within the inpatient setting – there is a need to improve responsiveness to the needs of people with dementia and their carers during a hospital stay to reduce functional decline and facilitate future planning;


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• Management of people with challenging behaviours – there is a need for a comprehensive community response to improve the management of people with challenging behaviours which are integrated with ACAT and SMHSOP services. Community Dementia Teams (CDTs) have been suggested as a practical solution to improving advice and support to carers about dementia and related problems. This support is inconsistently provided.


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7. ACCESS AND EQUITY Access and equity are fundamental to the delivery of a comprehensive dementia care and support system in South Western Sydney. Access to services and/or support should not be influenced by their unique needs, social or cultural factors, geography or capacity to pay. The SWSDN identified the following issues in relation to dementia access and equity:

• People with younger onset dementia – have unique needs associated with their family and work roles and have interests and needs which may differ from their older counterparts;

• People without carers/living alone – many dementia services and people with dementia rely on carers. People living alone or without carers have additional needs which need to be met by support services e.g. medication monitoring, assistance with eating, case management;

• People in rural/urban fringe areas – experience greater difficulty in accessing specialist services (medical and support) than people living in urban areas. A lack of transport can exacerbate this issue;

• Need for culturally or language specific services – SWS has high cultural diversity and approximately 40% of people in SWS do not speak English at home. People from culturally and linguistically diverse backgrounds experience barriers to accessing services such as the availability of information or services delivered in appropriate languages or a lack of understanding of the Australian health and welfare system;

• Service fragmentation and non-recurrent funding – new methods of funding services have resulted in a lack of continuity for some services and clients and greater competition has fragmented the service system, making it increasingly complex for clients to navigate;

• Need for Aboriginal people to access mainstream services and lack of Aboriginal & Torres Strait Islander specific services – there is limited information available about the prevalence of dementia in Aboriginal communities. Aboriginal people may lack access to specialist services due to a range of cultural and operational barriers, such as lack of information or transport, views that dementia is a normal part of ageing, lack of culturally specific services or the cost of services. Mainstream services also need to be reoriented to meet better the needs of Aboriginal people.

• People with a disability and dementia – particularly people with an intellectual disability have unique needs in relation to diagnosis, assessment and management;

• People with early stage dementia – may benefit from early diagnosis and treatment and an opportunity to plan for their future to ensure their wishes are understood;

• Communication and accessible information – a lack of information and difficulties in communication have been reported as significant barriers to access, particularly for people from CALD backgrounds;

• People who are financially disadvantaged – often experience difficulty in accessing services due to associated direct and indirect costs;

• People without an understanding/acceptance of dementia – this may include families and carers who are unsure of what dementia is and what services are available;

• Service access/equity – all services should be equitably available across SWS to ensure fairness of access. At the same time there needs to be recognition by service providers and funding agencies that the quantum of service provision per carer required may increase as the needs of the person with dementia increase.


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8. INFORMATION AND EDUCATION Information and education enables people with dementia, carers, family members, staff and the broader community to understand dementia and how to live with and support others to manage the deterioration associated with dementia. A variety of information and education is required to suit a range of target audiences. Information and education materials should be evidence based, accurate and provided in a timely and meaningful way. The SWSDN identified the following issues in relation to dementia information and education: • Challenging behaviours – there is an enormous need for specific information to

assist families/carers and staff to manage challenging behaviours associated with dementia;

• Understanding complex processes e.g. admission to residential care – carers and families consistently report difficulties in understanding and navigating the aged care system. One particular area of concern is the processes to facilitate admission to a residential care facility;

• Elder abuse – people with dementia are at risk of being victims of elder abuse. Information and education on identifying and responding to elder abuse should be widely available;

• General information and education for families and carers – at the point of diagnosis there is a need to provide general information and education for carers and families, supported by information on how to access more detailed information;

• Education for frontline workers on dementia – as the prevalence of dementia increases, there is a need for workers in a variety of customer service roles (e.g banking, pharmacy, police) to recognise possible signs of dementia and to act accordingly.

• Information and education for the general community – there is a need to demystify dementia and to promote early identification and diagnosis through broad community education and information;

• Information for the CALD community – people from CALD communities need to understand dementia and the impact that it will have on their family member. This information continues to need to be provided in community languages.

• Development, distribution and awareness of resources – there are numerous dementia resources which have been developed over time, and a vast array of places to go for information. There is a need to coordinate the development, distribution and awareness of resources to ensure widespread distribution of high quality information, and to reduce duplication of effort.

• Information and education for people with a diagnosis of dementia – some people with a diagnosis of dementia, particularly if diagnosed early, can still benefit from being provided with information and education to support them in decision making.

• Knowledge about Dementia Advisory Services – DASs have a variable profile across the area. These services are a valuable point of information, education and support for carers and services.

• Current list of services – the plan has been useful in identifying major dementia services. This information needs to be regularly updated.


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9. RESEARCH Research into dementia covers a broad scope, at an international, national, state and local level. Topics of research include prevention, risk reduction, treatment, care and support. A variety of individuals and organisations are involved in dementia research, including universities, hospitals, residential and community care organisations, lobby groups, people with dementia and their carers. Sydney South West Area Health Service has been active in dementia research through both the Centre for Education and Research on Ageing (CERA) at Concord Hospital, Aged Care and Rehabilitation Department at Bankstown Hospital and through various hospital based clinicians. The development of the Rowland Universal Dementia Assessment Scale (RUDAS) an alternative dementia assessment tool to the Mini Mental State Examination (MMSE) is an example of a locally driven research initiative. Hammond Care is also a leader in dementia research nationally, instigating changes to dementia care practice based on evidence. SSWAHS Aboriginal Health Services are a partner in a NHMRC study into Dementia in Urban Indigenous Communities being undertaken by POW Hospital. Early intervention and identification of cognitive impairment are key issues being examined. The study will also look at different models of service provision in the Aboriginal community. The SWSDN identified the following issues in relation to dementia research: • Local research projects/opportunities, including grants – service providers have

indicated an interest in participating in local research projects and are willing to apply for research grants to expand the capacity of local dementia research. Funding is available nationally for dementia research, and services will need to look for opportunities.

• Dissemination of research/evidence based practice – although much dementia research is occurring, the dissemination of information could be improved, particularly at a local level. This is particularly true when information is not shared across service types e.g. between residential and community care;

• Research capacity e.g. time, funding, expertise – with high demand for direct service provision at a local level, there is limited capacity for services to develop or participate in research, despite active interest. Limited research expertise in some organisations also is a barrier to research participation;

• Data collection and analysis – data collection and analysis systems and requirements vary across residential, hospital and community settings. Mandatory data collection systems also vary according to funding source. As a result, it is difficult to compare data service data across the whole of SWS.

• Lack of knowledge - about the incidence of dementia in the Aboriginal community


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10. WORKFORCE AND TRAINING Having a skilled workforce in sufficient numbers is essential to the delivery of the desired high quality dementia care and support system in South Western Sydney. The SWSDN identified the following issues in relation to the dementia workforce and dementia training: • Training, recruitment and retention – there is a limited pool of staff trained in

dementia care and support within SWS and an increasing number of services competing for staff. Recruitment of appropriate staff and retention are difficult as a result of the limited labour pool, combined with low remuneration levels and high work demands;

• General Practice (Practice Nurses and General Practitioners) – Both doctors and nurses working in general practice have a significant role to play in delivering dementia care and support. There is a need to ensure these clinicians are skilled in recognising and diagnosing dementia and in referring patients/carers to appropriate support services;

• Bilingual GPs – for the CALD community GPs who speak their language are a key source of information and help, and can be an important agent in changing negative cultural perceptions about dementia.

• Staff training – ongoing staff training in all sectors is required to ensure responsiveness to the needs of people with dementia. Accredited training should be encouraged to ensure skills are recognised and to develop career pathways;

• Specialist skills e.g. challenging behaviours – there is an identified need for specialist skills within the dementia workforce, particularly associated with the management of people with challenging behaviours;

• Sharing training resources – training resources across SWS are diverse and varied, and access can be difficult, particularly for small providers. Opportunities to share training resources to improve the capacity of the whole service system should be considered;

• Raising the profile of the industry – the aged care industry generally experiences difficulty in attracting sufficient numbers of quality staff. There is a need to proactively raise the profile of the aged care/dementia service industry to facilitate workforce growth and improved conditions;

• Undergraduate training opportunities – dementia should form part of the core curriculum in health related undergraduate courses to improve the general dementia awareness of future staff and to encourage recruitment.

• Cross cultural training for health workers – despite a large CALD population, understanding of the differing access and equity needs of the CALD people with dementia and their carers, and their communication needs. This training also needs to be incorporated into GP training.

• Salary payment under the SACS Award – most staff paid in the community sector are employed under the SACs Award. Salaries under this award are low and it is difficult to recruit and retain quality staff. Funding often does not increase to a level to match award increases;

• Programs under Contract – new programs are frequently funded for a limited contract period of 3-5 years. This makes it difficult to attract experienced staff and job uncertainty forces staff to seek alternative employment before the contract is renewed.

• Undergraduate Training Opportunities – student placements draw on existing programs eg Teaching in Nursing Homes Project.


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11. COMMUNICATION STRATEGY This plan has been developed in consultation with a wide range of service providers. The key phases in signoff and communication about the plan are: • Acceptance and signoff of the plan by the South West Sydney Dementia Network; • Distribution of copies of the final plan to SWSDN members; • A copy of the plan will be formally sent by SSWAHS to the Department of Ageing and

Disability and Homecare (DADAHC); • The plan will be distributed to a range of forums and service providers

- local HACC forums and HACC Development Officers; - local councils; - Southern Highland, Macarthur, Fairfield, Liverpool and Bankstown

Divisions of General Practice; - Key Aboriginal agencies including Tharawal Aboriginal Medical Service and

Land Council, and Gandangara Local Aboriginal Land Council; - Local CALD HACC forums; and - Local residential aged care facilities;

• Placement of the plan on local HACC Websites. Discussion will occur with DADHC regarding the way in which this plan will inform planning processes, tendering processes and funded programs. It will be used also to inform human service delivery across south west Sydney. It is noted that the plan and its strategies will provide a strong base from which to advocate for new resources and/or initiatives. This use of the plan for advocacy of new services will be taken up by the Network. Advocacy will also occur through forums such as the SWSAHS/HACC Advisory Committee and Dementia Focus Group The plan will also be used to identify opportunities for funding and service development when the next NSW Action Plan for Dementia is released.


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12. ACTION PLAN AND PLAN IMPLEMENTATION The Action Plan detailed in the following section has been developed as a result of information gathered from the demographic analysis, service mapping and consultation. The action plan covers the period July 2007 – July 2010. The Action Plan is structured around the five priority areas within the National Framework for Action on Dementia, with specific actions associated with each of the objectives of the South Western Sydney Dementia Plan (as outlined in Section 3). It should be noted that many of the actions address more than one of the five priority areas. Each action has an associated performance indicator and timeframe. Responsibility for implementing the actions (and the key identified stakeholders in the actions) are also noted. A number of working parties have also been established to support implementation and further development of strategies. The South Western Sydney Dementia Network will be responsible for the oversight of the implementation and monitoring the plan. As such, the Plan will remain a standing item on the agenda of SWSDN meetings. Regular reporting of progress against the plan will occur at these meetings. The Network will formally assess progress against the plan every six months and forward a report to Network members and DADHC (Office for Ageing and Metro South Region). Annual review will occur to ensure that the plan remains relevant. An important role for the Network will be the review of tasks and the allocation of responsibility to network members and working parties. This allocation of responsibility will occur early in 2008. It is noted that some funding may be required to support implementation of actions. This has been identified in the Plan. A comprehensive review of the Plan will be undertaken in mid 2010, with a view to developing a further plan as required.


CARE AND SUPPORT

Action Performance Indicator Timeframe Responsibility Key Stakeholders 1. To continuously improve service provision, coordination, integration and referral pathways within and between the acute care, residential care and community support services for people with dementia and their carers 1.1 Implement a system of electronic discharge summaries to improve communication between hospitals and General Practitioners

Electronic discharge summaries implemented and evaluated

December 2011

SSWAHS Divisions of General Practice & General Practitioners

1.2 Maintain Nursing Home Liaison positions within the acute care setting to support people in making residential care placement decisions

SWS maintains 4 Nursing Home Liaison positions

Ongoing SSWAHS – Aged Care

Nursing Home placement officers; ACATs

1.3 Investigate opportunities to develop hospital outreach services / telehealth services into residential aged care to reduce the need for avoidable hospital admissions

Options investigated July 2009 SSWAHS – Aged Care; Residential care providers

Residential Aged Care; SSWAHS Clinical Redesign team

1.4 Identify opportunities to pilot or implement innovative partnership services between sectors

Opportunities identified and evaluated post implementation; evaluation results disseminated

Ongoing SWSDN SWSDN partners

1.5 Maintain the SWS Dementia Mapping document Dementia Mapping document updated annually

Annually SWSDN; Commonwealth Carelink Centre

SWSDN, Carelink

1.6 SSWAHS to review the capacity of ACAT services to meet demand for assessment and identify priorities for service enhancement

Review completed and priorities identified

Dec 2008 SSWAHS Aged Care Services

ACATs

1.7 Undertake regular service reviews and formal evaluations to determine if the needs of service consumers are being met

Internal review and quality processes are implemented

Ongoing SWSDN services

Clients; service providers

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Action Performance Indicator Timeframe Responsibility Key Stakeholders 2. To support General Practitioners (GPs) in the diagnosis and management of dementia, along with the provision of ongoing, holistic care to people with dementia and their carers 2.1 Establish a working party to consult and work with GPs, through Divisions of General Practice, to identify the best ways to support GPs in their work with people with dementia and their carers in SWS. Include identification of strategies which focus on bilingual GPs and support to CALD people with dementia and carers.

Working Party established July 2007 SWSDN Divisions of General Practice SSWAHS

2.2 Promote the availability of existing dementia assessment tools to GPs

Annual promotional activities undertaken

Ongoing General Practice Working Party

GPs; people with dementia; Divisions of General Practice

2.3 Regularly update GPs on local services available for people with dementia and their carers and other relevant information

Reminder information sent to GPs through Division newsletters

Biannually (April & October)

Commonwealth Carelink Centres

Divisions of General Practice General Practice Working Party

2.4 Provide and promote tertiary services for the diagnosis and treatment of dementia for complex clients

Availability of tertiary dementia/memory clinics

Ongoing SSWAHS Divisions of General Practice

Action Performance Indicator Timeframe Responsibility Key Stakeholders 3. To improve the care and support of people with dementia and their carers during a hospital stay 3.1 Develop and distribute an information package on “Being in Hospital with Dementia” to be distributed prior to a planned hospital admission or on admission in case of an emergency. Include information on CALD issues in the package

Information package developed and distributed – noted on CERNER

July 2009 SSWAHS – Dementia CNC

- People with dementia and their carers - Hospital staff

3.2 Investigate options for translating “Being in Hospital with Dementia” into community languages

Funding options investigated July 2010 SSWAHS Aged Care

- CALD People with dementia and their carers - Hospital staff

3.3 Develop systems to better identify and manage people with delirium in hospital

New systems implemented and evaluated

July 2010 SSWAHS Aged Care

- People with dementia and their carers - Hospital staff

3.4 Implement guidelines for the design of hospital environments to best meet the needs of people with dementia

Aged Care refurbishments or redevelopments are consistent with guidelines

Ongoing SSWAHS – Capital Works

SSWAHS; people with dementia; facility planners; hospital auxiliaries

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Action Performance Indicator Timeframe Responsibility Key Stakeholders 3. To improve the care and support of people with dementia and their carers during a hospital stay 3.5 Hospital staff participate in SWSDN Number of hospital staff who are

SWSDN members Annually SSWAHS SWSDN; hospital staff

3.6 Investigate the feasibility of establishing additional services to support people with dementia / delirium during a hospital stay

Feasibility assessed. Recommendations implemented as funding permits

December 2011

SSWAHS SSWAHS Clinical Redesign; Aged Care Services; Hospital staff

3.7 Provide education to general hospital staff (medical, nursing, allied health and ancillary) on dementia. Incorporate information on access and equity, and cross cultural communication issues

Number of recipients of education Evaluation of education session


Hospital staff; Aged care staff; aged care multicultural health workers

3.8 Seek permanent funding for the Western Zone Dementia CNC position

Funding sought December 2007

SSWAHS – Aged Care

Hospital staff; Aged care staff; aged care multicultural health workers

Action Performance Indicator Timeframe Responsibility Key Stakeholders 4. To increase the availability of dementia specific community services 4.1 Expand the capacity of Aged Care Assessment Teams (ACATs) to respond to increasing demand from people with dementia and their carers. Incorporate implications of a large CALD population in an funding proposals

Additional funding allocated to ACATs in SWS

Annually DoHA SSWAHS – Aged Care

4.2 Pursue HACC capital funding opportunities for the redevelopment of Broughton House, adjacent to Camden Hospital, to create a purpose build dementia specific centre based day care and resource service

HACC Capital funding allocated; Broughton House redeveloped

July 2010 DADHC SSWAHS – Aged Care

4.3 Identify service gaps and pursue funding for a dementia specific centre based day care service - in the Liverpool LGA; - in Wingecarribee LGA.

Identify gaps & funding sought 2008 and ongoing

SWSDN; community agencies

SWSDN; carers

4.4 Identify service gaps and pursue capital funding for a dementia day care centre in Liverpool LGA

Identify gaps & funding sought 2008 and ongoing

SWSDN; community agencies

SWSDN; carers

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Action Performance Indicator Timeframe Responsibility Key Stakeholders 4. To increase the availability of dementia specific community services 4.5 Pursue funding for dementia specific centre based day care in Macarthur, particularly Campbelltown

Funding sought 2008 and ongoing

SWSDN SWSDN; carers

4.6 Pursue additional funding for out of hours and weekend centre based day care services across SWS


SWSDN Centre based day care providers

4.7 Pursue funding for in-home respite services to support carers to attend to carer support services, health care appointments, etc.

Funding sought Ongoing SWSDN SWSDN

Review service activity and needs Dec 2008 4.8 Collect data, identify service needs and pursue additional funding to the Minto and Hoxton Park Aboriginal Centre Based Day Care services to expand into dementia care


SWSDN/SSWAHS SSWAHS –Aged Care; SSWAHS – Aboriginal Health

4.9 Pursue additional funding to expand the activities of the three existing SWS Dementia Advisory Services (DAS)

Funding sought 2008 SWSDN/?SSWAHS SSWAHS – Aged Care Alzheimer’s Australia NSW

4.10 Develop models of care and service provision for older people with severe and complex behavioural disturbance, incorporating BASIS and DBMAS initiatives

Additional funding allocated; range of acceptable models identified and agreed upon for further development; increased activity

July 2008 SSWAHS – Mental Health

SSWAHS – Aged Care; RACF

4.11 Investigate opportunities to establish innovative, flexible dementia respite models in SWS, particularly for people with challenging behaviours

Options identified; new services established

July 2010 DADHC; DoHA SWSDN

4.12 Establish a Community Dementia Nurse position in Macarthur

Community Dementia CNC established

June 2008 SSWAHS – Aged Care

patients; carers; hospital staff

4.13 Pilot a Community Dementia Team service in Liverpool, comprising Registered Nurses, Psychologists and Neuropsychologists

Pilot service established and evaluated

July 2010 SSWAHS – Aged Care

Community Aged Care and Rehab Team; Clients and carers

4.14 Provide additional Community Aged Care Packages (CACPs) for people with dementia, including Aboriginal and language specific packages

Annual increase in CACP’s provided to people with dementia across SWS

Annually DoHA; CACP providers

SWSDN

4.15 Provide additional Extended Aged Care at Home (EACH) dementia packages across SSWAHS, including Aboriginal and language specific packages

Annual increase in availability of EACH-D packaged

Annually DoHA; EACH providers

SWSDN

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Action Performance Indicator Timeframe Responsibility Key Stakeholders 5. To increase the availability of dementia specific residential care services 5.1 Establish additional dementia specific high and low care facilities in SWS

Annual increase in the number of dementia specific beds available

Annually Residential Aged Care providers

DoHA

5.2 Increase the number of residential respite beds available in SWS in both high and low care

Annual increase in the number of dementia specific respite beds available

Ongoing Residential Aged Care providers

DoHA

5.3 Investigate opportunities to increase the number of language specific beds (high care, low care and respite) within residential aged care; possibly through the development of clusters within larger facilities

Increase in number of language specific beds for the CALD community

Ongoing Residential Aged Care providers

DoHA

5.4 Evaluate the Hammond Care/SSWAHS partnership in the provision of residential care for people with challenging behaviours

Progress report completed and disseminated

July 2008 Hammondcare; SSWAHS Mental Health

DoHA

Action Performance Indicator Timeframe Responsibility Key Stakeholders 6. To work and plan collaboratively to plan for the growth in services required to meet the needs of people with dementia and their carers 6.1 Utilise the SWS Dementia Plan to feed into HACC program planning processes for the allocation of growth funding

Actions identified in the SWS Dementia Plan are incorporated into the regional HACC purchasing plan

Ongoing DADHC SWSDN

6.2 Maintain the SWSDN to facilitate joint planning, information sharing and the development of partnerships

SWSDN meetings held at least quarterly


SWSDN members

6.3 Advocate with funding bodies for new services on behalf of people with dementia and their carers,

Additional funding received Ongoing SWSDN Carers; people with dementia; SWSDN

6.4 Seek funding to support implementation of the plan Need identified in HACC Planning Grid

Dec 2007 SWSDN SWSDN; Carers; people with dementia;

6.5 Implement the communication strategy Number of Actions Implemented Dec 2007 SWSDN SWSDN; HACC Service Providers; DADHC

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ACCESS AND EQUITY

Action Performance Indicator Timeframe Responsibility Key Stakeholders 7. To improve the responsiveness of the service system to the needs of Aboriginal people with dementia and their carers 7.1 Invite Tharawal Aboriginal Medical Service to become a member of the South Western Sydney Dementia Network

Invitation sent Tharawal becomes a SWSDN member

December 2007

SSWAHS Aged Care

Tharawal Aboriginal Medical Service

7.2 SSWAHS to develop partnerships with the Tharawal Aboriginal Medical Service to support the diagnosis and management of dementia in Aboriginal people

Partnership established and referrals made

December 2008

SSWAHS Aged Care & Aboriginal Health

Tharawal Aboriginal Medical Service

7.3 Provide training to Aboriginal Health workers on dementia

Number of people trained Ongoing SSWAHS Aged Care

SSWAHS Aboriginal Health

Needs analysis undertaken April 2008 SWSDN SWSDN 7.4 Investigate opportunities to establish Aboriginal dementia carer support services Funding sought as per needs analysis TBD SWSDN SSWAHS; Tharawal

Aboriginal Medical Service

Action Performance Indicator Timeframe Responsibility Key Stakeholders 8. To improve the responsiveness of the service system to the needs of people from culturally and linguistically diverse (CALD) backgrounds with dementia and their carers 8.1 Expand membership of the SWSDN to include more services representing CALD communities

Number of members representing CALD communities

Ongoing SSWAHS Aged Care

SWSDN; CALD Organisations

Needs analysis undertaken April 2008 SWSDN SWSDN 8.2 Investigate opportunities to establish language specific dementia carer support services, including models of support and sources of funding

Services developed and funding sought as per needs analysis

TBD SWSDN SWSDN

8.3 Undertake a literature review and develop a briefing paper on issues, gaps and strategies focusing on CALD people with Dementia and their carers.

Briefing paper developed and distributed

December 2008

DAS SWSDN AEAHA

8.4 Pursue funding to develop community based respite, education and support services for people with early diagnosis of dementia from CALD backgrounds

Funding sought July 2008 SWSDN SWSDN AEAHA

8.5 Pursue funding for Dementia Day Care and respite services for language and cultural specific groups.

Funding sought for Bankstown, Fairfield, Liverpool, and Macarthur

Dec 2009 SWSDN SWSDN AEAHA

8.6 Dementia care workers to receive cultural awareness training to provide appropriate and culturally sensitive

Number of services delivering cultural awareness training to staff;

Annually SWSDN CALD Organisations; mainstream dementia

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Action Performance Indicator Timeframe Responsibility Key Stakeholders mainstream services to people from CALD backgrounds Number of staff trained in cultural

awareness services

Action Performance Indicator Timeframe Responsibility Key Stakeholders 9. To improve the responsiveness of the service system to the needs of people with an intellectual disability and dementia and their carers 9.1 Undertake research into effective models to provide care and support for people with an intellectual disability and dementia

Research completed; results disseminated

April 2009 SWSDN DADHC; SSWAHS

9.2 Investigate opportunities to develop services within SWS (based on research evidence) for people with an intellectual disability and dementia

New service(s) established July 2010 SWSDN DADHC

Action Performance Indicator Timeframe Responsibility Key Stakeholders 10. To improve the responsiveness of the service system to people with dementia aged under 65 10.1 Establish a Working Group to further investigate the need for services for younger people with dementia and their carers

Working Party established July 2007 SWSDN SSWAHS Aged Care

10.2 Map the availability of services available for younger people with dementia in SWS, including people with an intellectual disability

Mapping Complete December 2007

Younger People with Dementia Working Party

SWSDN

10.3 Undertake research into effective community based services for younger people with dementia to determine appropriate models for implementation in SWS

Research complete; Options for proposed models developed and disseminated

December 2008

Younger People with Dementia Working Party

SWSDN: younger people with dementia and their carers

10.4 Investigate opportunities to develop a residential care service which caters for the needs of younger people with dementia

Options paper developed July 2010 Residential care providers

− SSWAHS − DoHA − DADHC

10.5 Provide education to General Practitioners on recognising the signs of early onset dementia

Number of GPs participating in educational programs

Ongoing General Practice Working Party

Divisions of General Practice

10.6 Develop a SWS-wide referral pathway for people with younger onset dementia to ensure access to appropriate services and supports

Referral pathway developed July 2010 SWSDN SWSDN: younger people with dementia and their carers; all service providers

10.7 Develop new models and services for younger people with dementia

New models identified. Funding sought

July 2009 SWSDN – Working Party

SWSDN; younger people with dementia; carers

11. To improve the responsiveness of the service system to people with dementia who live alone


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Action Performance Indicator Timeframe Responsibility Key Stakeholders 11.1 Expand the capacity of the Dementia Monitoring Services in each LGA to cater for additional clients

Additional outputs for Dementia Monitoring Services

July 2010 DADHC Dementia Monitoring Services

11.2 Investigate opportunities to establish daily phone monitoring services

Options considered July 2010 SWSDN Carers; clients

Model of care developed July 2009 SWSDN 11.3 Develop a model of care to case manage people with dementia who live alone and seek funding if required Funding sought for packaged care

model if required July 2010 SWSDN

People with dementia who live alone

Action Performance Indicator Timeframe Responsibility Key Stakeholders 12. To improve the responsiveness of the service system to carers of people with dementia 12.1 Widely promote the availability of carer support services currently available in SSWAHS

Promotional initiatives undertaken annually

Ongoing SWSDN members

Carers; clients; service providers

12.2 Regularly provide information to General Practitioners about carer support services available in SSWAHS

Information distributed at least annually

Ongoing Commonwealth Carelink Centres

Divisions of General Practice

12.3 Conduct consultations with carers of people with dementia to determine current and likely future needs and issues

Consultations held Information distributed

Ongoing DADHC SSWAHS

SWSDN

12.4 Establish additional support groups for carers of people with dementia, including groups which can meet the needs of working carers

Additional support groups established; Number of people participating in support groups

Ongoing SWSDN − DADHC − DoHA

Identify needs and gaps 12.5 Review availability of carer respite services including centre based day care, flexible respite, emergency respite and residential respite. Pursue additional funding if required Pursue additional funding if required

July 2008 SWSDN Carers; clients; service providers

13. To ensure that the needs of people with dementia and their carers are included in future developments and plans 13.1 Advocate on behalf of SWS residents with dementia and their carers in Commonwealth and NSW policy and program development, and funded programs.

No of Submissions/responses to inquiries & tenders

Ongoing SWSDN members

Clients; carers; service providers

13.2 Consultation with DADHC and other agencies regarding how this plan can be used to inform other state and federal planning processes

Consultation occurs 2008 SWSDN members

SWSDN

13.3 Develop a discussion paper which addresses the issue of funding services based on number of clients compared to quantum of service per client

Paper developed and submitted 2008 SWSDN members

SWSDN; DADHC


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Action Performance Indicator Timeframe Responsibility Key Stakeholders 14. To improve awareness and understanding of dementia in the local community 14.1 Hold annual dementia expos and other community events associated with Dementia Awareness week; Carers Week; Seniors Week and other significant community events

Number of events and activities held annually; number of participants

Annually DAS Services SWSDN Members

14.2 Identify key groups in the community who could benefit from information and education on dementia e.g. boarding house licensees, service clubs

Listing of local community groups developed

April 2008 DAS Community groups; SWSDN; carers; clients

14.3 Develop a general information/education program which can be delivered by a range of stakeholders, including being delivered in local community languages

General community Information/education program developed

July 2008 SWSDN DAS positions across NSW

14.4 Offer local community groups the opportunity to receive general education/information sessions

Number of groups participating in information/education sessions annually

Annually from 2009

SWSDN General community

14.5 Investigate alternative strategies to improve general awareness of dementia in the community

Options paper developed and discussed at SWSDN meeting

July 2008 SWSDN General community

14.6 Audit the availability of translated dementia education resources and develop and distribute a centralised listing

Audit complete and listing compiled April 2008 SWSDN CALD community, service providers

Action Performance Indicator Timeframe Responsibility Key Stakeholders 15. To provide accessible and practical information to carers of people with dementia to support them in their caring role 15.1 Conduct an audit of all the existing carer information resources in SWS and distribute results through the SWSDN

Audit complete and results circulated April 2008 SWSDN SWSDN

15.2 Identify any gaps in information available and develop strategies to address unmet needs

Options for new information resources identified; new resources developed or sourced

December 2008 and ongoing

SWSDN HACC Forums; SSWAHS; Commonwealth

15.3 Expand the dementia resource libraries associated with the 3 SWS Dementia Advisory Services

Application for non-recurrent funding submitted

Ongoing DAS SWS DAS Services

15.4 Develop a SSWAHS Aged Care and Rehabilitation website to provide information to carers on services available locally

Website functional September 2007

SSWAHS – Aged Care

SSWAHS; IT services;

15.5 Promote Dementia Advisory Services through HACC and related forums, and through development of promotional materials which can be provided to carers

DASs attend HACC forum; Promotional materials have been developed and distributed

June 2008 and ongoing

DAS Managers

Carers and service providers

INFORMATION AND EDUCATION


RESEARCH

Action Performance Indicator Timeframe Responsibility Key Stakeholders 16. To participate in research into issues associated with dementia and the care and support of people with dementia and their carers, which leads to improved services and improved outcomes 16.1 Finalise the evaluation of the Rowland Universal Dementia Assessment Scale (RUDAS)

Evaluation completed July 2008 SSWAHS – Aged Care

− National Ageing Research Institute

− Alzheimers’ Australia − DoHA

16.2 Undertake a stocktake of dementia research projects in SWS and identify potential research opportunities

Stocktake complete; research opportunities identified

December 2008

SWSDN - Alzheimer’s Australia

16.3 Investigate research opportunities and apply for grant funding to undertake locally led research projects into dementia care and support

Number of successful research grant applications

Annually SWSDN SWSDN

Action Performance Indicator Timeframe Responsibility Key Stakeholders 17. To make research results accessible to the dementia workforce and carers 17.1 Disseminate information on dementia research in SWS through the SWSDN e-bulletin system

Number of research items distributed through e-bulletin system annually

Ongoing SSWAHS SWSDN

17.2 Share information learned at national and international conferences

Conference delegates Ongoing SWSDN SWSDN

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WORKFORCE AND TRAINING

Action Performance Indicator Timeframe Responsibility Key Stakeholders 18. To increase the number of community, acute and residential care workers who are trained in dementia care and support 18.1 Establish a working party to consider local opportunities to improve dementia training, recruitment and retention

Working party established July 2007 SWSDN SWSDN; service providers; HACC trainer

18.2 Undertake an audit of all the workforce education/training programs available in SWS to determine good practice and opportunities for shared programs

Audit complete; recommendations implemented

December 2008

SWSDN SWSDN; SSWAHS Workforce Development Unit

18.3 Provide basic training on dementia to volunteers working with people with dementia (and include CALD considerations)

Number of volunteers receiving training on dementia

Annually SWSDN Volunteers; all services

18.4 Link with the local tertiary sector to provide education on dementia for health and community care professionals, including offering student placements

Number of tertiary students undertaking placement in dementia services

Annually SWSDN Training, Recruitment & Retention Working Party

SWSDN

Action Performance Indicator Timeframe Responsibility Key Stakeholders 19. To support recruitment and retention and develop career pathways in dementia care, to provide expertise and long term options for staff 19.1 Investigate opportunities to transition volunteers into paid care and support roles

Number of volunteers transferring to paid roles

Annually SWSDN All services

19.2 Investigate opportunities to establish Dementia Clinical Nurse Consultant positions within all SWS hospitals

Number of positions July 2010 SSWAHS – Aged Care

SSWAHS Aged Care

19.3 Work with the Commonwealth and NSW Governments to address viability issues including: improve Industrial Award conditions, address shortfalls in recurrent funding of services, and review benefits of time limited contracted services.

Discussions held with DADHC and DOHA

Dec 2008 SWSDN SWSDN; commonwealth; DADHC

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13. APPENDICES

APPENDIX A: LIST OF ABBREVIATIONS ABS Australian Bureau of Statistics ACAT Aged Care Assessment Team AHS Area Health Service AIDS Acquired Immune Deficiency Syndrome ASET Agedcare Service Emergency Team BASIS Behavioural Assessment and Intervention Services BPSD Behavioural and Psychological Symptoms of Dementia CACP Community Aged Care Package CALD Culturally and Linguistically Diverse CERA Centre for Education and Research on Ageing DADHC NSW Department of Ageing, Disability and Home Care DAS Dementia Advisory Service DBMAS Dementia Behavioural Management and Assessment Services DoHA Commonwealth Department of Health and Ageing EACH Extended Aged Care at Home EACH D Extended Aged Care at Home – Dementia ED Emergency Department GP General Practitioner LGA Local Government Area MMSE Mini Mental State Examination RACF Residential Aged Care Facility RUDAS Rowland Universal Dementia Assessment Scale SMHSOP Specialist Mental Health Services for Older People SSWAHS Sydney South West Area Health Service SWS South Western Sydney


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APPENDIX B: REFERENCES Access Economics (2005) Dementia Estimates and Projections, NSW and Its Regions: Report Prepared for Alzheimer’s Australia NSW and NSW Health Access Economics (2006) Dementia prevalence and incidence among Australians who do not speak English at home. Report for Alzheimer’s Australia. Alzheimer’s Australia ‘What is Dementia?’ (1999) www.alzheimers.org.au/content.cfm?infopageid=379&CFID=5412928&CFTOKEN=64875349 Australian Bureau of Statistics (2004) ‘Disability, Ageing and Carers, Australia: Summary of Findings’ www.abs.gov.au/AUSSTATS/[email protected]/ProductsbyCatalogue/C258C88A7AA5A87ECA2568A9001393E8?OpenDocument Department of Ageing, Disability and Home Care (2002) Future Directions for Dementia Care and Support in NSW 2001 – 2006, Department of Ageing, Disability and Home Care, Sydney Janicki, M. & Dalton, A. (1999) Dementia, Ageing and Intellectual Disabilities: A Handbook, Taylor & Francis, Philadelphia HACC - CALD Consultation (2007) Progress report outstanding issues, problems and gaps. South Western Sydney Dementia Plan - Polish Consultation (2006) Living with Memory Loss Program, Spanish speaking group, Final Evaluation (2006)

http://www.alzheimers.org.au/content.cfm?infopageid=379&CFID=5412928&CFTOKEN=64875349

http://www.alzheimers.org.au/content.cfm?infopageid=379&CFID=5412928&CFTOKEN=64875349

http://www.abs.gov.au/AUSSTATS/[email protected]/ProductsbyCatalogue/C258C88A7AA5A87ECA2568A9001393E8?OpenDocument

http://www.abs.gov.au/AUSSTATS/[email protected]/ProductsbyCatalogue/C258C88A7AA5A87ECA2568A9001393E8?OpenDocument

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