One of four older people is likely to experience cognitive impairment while living in their own home. The onset of dementia for many people will occur when they are living at home without the assistance of formal care services. Carers and families of a person at this stage often encounter evidence of the person's forgetfulness, confusion, repetitive conversation, shorter attention span, and anxiety or suspicion about possessions or the spouse/carer's behaviour. Carers often do not seek or expect formal support services, for reasons of cultural, spiritual and community expectations, privacy and confidentiality, and the natural progression of the caring role within a relationship.

As dementia progresses, the majority of people are cared for within mainstream services, and receive assistance through the Home and Community Care program, the acute hospital system, government funded residential care and/or private community and residential services.

A number of organisations provide specialist information and services to people with dementia, their carers and their families. These include Aged Care Assessment Services, Psychogeriatric Assessment and Treatment Services, dementia carer support workers (who are associated with carer initiatives and carer respite centres), Cognitive Dementia and Memory Services and the Alzheimer's Association Victoria.

A person with dementia who lives in their own home will be likely to access a range of services over the course of the disease, and their level of need for a particular service will vary during the pathway of dementia.

To respond appropriately at the different stages of the disease, mainstream and specialist service providers need to recognise the variable needs of the person with dementia, their carers and their families.

Actions

2.1 Review the progress of the CDAMS

The CDAMS were established across the State in 1998 with the funding capacity to provide limited early diagnosis, advice, support and referral services for people with cognitive difficulties. The services are generally located within aged care extended care centres and public hospitals.

The 1998 funding allocation provided for a service within each of the Department of Human Service's geographic regions. Funds were allocated regionally according to the most suitable spread of services and resources, depending on a region's existing expertise, the population spread and the need to maintain a viable functioning CDAMS as prescribed in the program guidelines. There are thirteen funded services across the State.

Early diagnosis and assessment are of significant value in the effective early management of dementia, as is the provision of information about the diagnosis to the person with dementia, their carers and their families.

Early diagnosis provides the opportunity to:

• Modify risk factors in relation to vascular dementia.
• Use symptomatic treatment where appropriate.
• Identify treatable problems such as depression.
• Appropriately medicate and treat people with dementia (in terms of the response of general practitioners, medical specialists and other service providers).
• Address issues of carer burden.
• Conduct future planning in relation to issues such as legal competence and driving.

The CDAMS, as regional specialist referral points for early identification, diagnosis and support of people with cognitive deficits or memory loss, increase expertise throughout the health and community service system. They also facilitate the integration of services for individuals and their families.

A review of the progress of the CDAMS will be valuable to ensure client access to consistent Statewide services, and to ascertain the services' impact in the early management of dementia.

The review framework will require the involvement of the consumer/referral source and service provider.

2.2 Establish regional liaison positions to develop and implement consistent referral protocols for those agencies that provide specialist information and services to people with dementia and their carers

Cooperative working relationships among agencies are pivotal for appropriate support to be provided to people with dementia and their carers. For cooperation to occur, services need to understand each other's role and how other service providers can contribute to the care of people with a dementing illness and their carers. A number of agencies provide specialist information and services to people with dementia, their carers and their families. Particularly significant to people with dementia, their carers and their families are:

• Aged Care Assessment Services (ACAS).
• Psychogeriatric Assessment and Treatment Services (PGATS).
• Dementia carer support workers associated with the carer initiatives and carer respite centres.
• The CDAMS.
• Alzheimer's Association Victoria.

Further, the majority of people with dementia are cared for within mainstream services provided through the Home and Community Care program, the acute hospital system and residential care.

A number of the services described here will be alliance members in the Primary Care Partnerships. These partnerships must appropriately respond to client needs-a process that could occur via the establishment of regional liaison positions to address local community needs. Linking these positions to centralised coordination processes will enable the consistency of partnership approaches and help address inter-regional issues.

2.3 Establish behavioural support resources to better respond to the needs of carers, families and residential facilities such as supported residential services and boarding houses

A major contributor to increasing carer burden is behaviour disturbance. Often, carers and service providers are supported through a group based educational approach with other carers or service providers. In addition to this support, alternative assistance through behavioural support for the individual will be beneficial for carers and service providers.

A dementia behavioural support service would offer practical assistance to carers, families and service providers coping with behavioural issues. Such a service will offer assistance and guidance to carers in the community, including non-government funded residential services such as boarding houses and supported residential services.

The Victorian Psychogeriatric Care Program (funded through the Commonwealth Government) provides consultancy support services to hostels and nursing homes in the rural areas of Victoria. The rural Psychogeriatric Assessment and Treatment Services are funded through this program to include staff who provide a referral point for residential facilities that are concerned about someone with dementia and their challenging behaviour.

Augmenting current dementia support services in metropolitan Melbourne and rural Victoria would improve the State's behavioural support resources.

The additional resources will enable the support services to better respond to the needs of carers and families in their own homes, and people residing in boarding houses and supported residential facilities.

2.4 Encourage general practitioners to use new Medicare Benefit Scheme items to fund the provision of dementia care planning, case conferencing and health assessments

People with dementia and their carers need to be able to access care coordination. Along the pathway of dementia the general practitioner is a central point of contact for the person with dementia, their carers and their families. The general practitioner needs to be able to satisfactorily link individuals to appropriate community, dementia, financial or legal services.

Resource tools relating to local support networks have been developed to help general practitioners access information about available services. However, maintaining accurate information is often a problem with these resources. Further, general practitioners are constrained in the time they can allocate to helping clients access needed services.

In November 1999 additional Medicare Benefit Scheme items became available that provide payments to general practitioners for undertaking multidisciplinary care plans and multidisciplinary case conferencing for people with chronic conditions. In addition, general practitioners are reimbursed for undertaking voluntary health assessments of people aged 75 years or older (or over 55 years in the Aboriginal and Torres Strait Islander population).

General practices with a significant aged population need to utilise the opportunities available through the Medicare Benefit Scheme changes. To do so, they can either cooperate with current community service providers (whereby co-location may occur) or could directly employ at the general practice a case manager preferably experienced in dementia care and support.

Such a person in targeted general practices could facilitate links with appropriate services along the entire pathway of dementia for the people affected by dementia, their carers and their families.

This worker could provide a level of care coordination for people with dementia, their carers and their families who require assistance in accessing appropriate services.

2.5 Support the ongoing development in acute health care services of good clinical practice, care planning and coordination with community providers for people with dementia, their carers and their families

Admission for acute inpatient care occurs on an episodic basis, and the acute care focus is on meeting the medical or surgical needs of the individual. During the 1990s, the average length of stay in hospital decreased significantly. The estimated average length of stay per episode for the 1999–2000 financial year was 3.57 days. Factors that have contributed to this decrease include changes in clinical practice, technology and pharmacology advances, and the use of less invasive procedures.

For older people, who represent a significant proportion of the users of the acute health care services, perceived problems with the use of acute hospitals include admission difficulties, medication errors, the level of care provided in the accident and emergency department, and lack of or inappropriate discharge planning. The management of a person in an acute hospital is further complicated when they have dementia. Issues such as the capacity for communication affect the otherwise straightforward management of a clinical condition.

Acute health care represents only one component of the broader health care system. There is a need for continuity of care at the time of discharge from an acute care setting.

People with dementia may access acute hospital and accident and emergency services a number of times as they progress along the pathway of dementia. Acute hospitals need to be able to recognise the early symptoms of dementia, initiate diagnosis, and provide appropriate information and support. Hospitals also need to be able to provide appropriate treatment and discharge to people in advanced stages of dementia, as well as appropriate care to people in the final stages of the condition, their carers and their families.

The decreasing length of stay in acute care has contributed to the need for continuity of care. Appropriate care planning includes the optimal use of general practitioners and other community based service providers, thus ensuring the provision of appropriate services on discharge.

Ongoing development of appropriate care responses in the acute health care services to people affected by dementia, their carers and their families, requires the identification of examples of good practice in acute hospitals. Further examination of current initiatives within the acute health care services would assist in identifying areas that could contribute to a responsive service environment within the acute sector for people with dementia. Such an exercise would require interdivisional cooperation, as well as the resources and expertise of a wide range of service providers.

2.6 Support the development of aged care and palliative care cooperative service responses in the delivery of palliative care services to people with dementia

Palliative care is provided through specialist inpatient and community based services as well as mainstream services such as acute hospitals, district nursing and community health centres.

Palliative care provides coordinated medical, nursing and allied health services for people of all ages who are terminally ill. The service is delivered where possible in the environment of the patient's choice, and provides physical, psychosocial, emotional and spiritual support for the individual with the terminal illness, and support for the family and friends.

Dementia is recognised as a terminal illness in its own right. People in the final stages of their dementing illness require a palliative care service that is able to respond to their dementia care needs and, where possible, be provided in a care setting familiar to the family.

The provision of care to people in the final stages of dementia is difficult because the person has a limited capacity to communicate. It is increasingly difficult for the service provider to identify pain or discomfort and subsequently manage symptoms. Behavioural disturbance may also still occur.

Meeting the complex terminal care needs of people with a dementing illness offers particular challenges for the service providers giving the care. Staff of residential facilities, for example, require knowledge and understanding of both palliative and dementia care, and the staff of mainstream or specialist palliative care services require knowledge and understanding of both dementia and palliative care.

The availability of dementia education and training for palliative care staff would help enable appropriate palliative care for people with dementia. The implementation of action 1.1 (Ensure access to Statewide training by supporting dementia training courses) would involve identifying mainstream and specialist palliative care staff as a segment of the workforce that requires dementia training.

Palliative Care Victoria is the peak body for palliative care in the State. It promotes and advocates the principles of palliative care, and fosters the development of hospice and palliative care services. It provides education and training, forums, interagency support and networking, and represents its members and the palliative care field. Discussions with Palliative Care Victoria and service providers would help identify palliative care education needs and further areas of cooperation to ensure responsive palliative care services to the target groups.

2.7 Develop service responses and resources that address the needs of low incidence and marginalised groups, such as people with Down syndrome and dementia, people with early onset dementia, and people with dementia from the Koorie community, from culturally and linguistically diverse backgrounds, and in rural Victoria

The varying experience of dementia and its progressive nature creates challenges for service providers in providing flexible responses to diverse needs along the pathway of dementia. There is a continuing need to support service providers in accommodating the needs of individuals through flexible service delivery.

2.8 Enable service responsiveness to people with early stage dementia

Early and accurate diagnosis of dementia is important so reversible dementia can be identified and treated; other conditions that can present as dementia (such as depression) can be diagnosed and treated; people with dementia and their carers are better able to plan for their future; and beneficial pharmaceutical products can be appropriately used.

With increasing numbers of people accessing early diagnosis, general practitioners, counsellors, financial/legal advisers, specialist diagnostic services and social supports need to have the capacity to respond appropriately in providing services. The services need to be available both for the carers and families, and for the person with dementia, who retains a level of insight into the emerging difficulties. Supporting services to develop appropriate responses for people with early stage dementia would enhance the ability of people to access assistance.

Dementia-Care and Support in Victoria 2000 and Beyond considers the needs of all people affected by dementia, their carers and their families. The development of individual actions that relate to distinct groups is recognition that additional attention to the needs of particular people is required for maximum quality of life.

So that services can respond to special needs, an increased knowledge of the issues for, and needs of, the low incidence, marginalised and early stage dementia groups is required. In some cases, such as people from linguistically and culturally diverse backgrounds, much work has been undertaken to identify barriers to access and develop appropriate service responses. For this group, service approaches can be developed that build on current knowledge and models of best practice.

Service providers need to be supported in developing local-level service approaches that can respond (on an ongoing basis) to the needs of low incidence, marginalised groups, and people with early onset dementia. Such approaches require a clear understanding of the care needs of particular groups.

2.9 Increase and maintain the availability of flexible social supports

The role of the carers and families in caring for people with dementia is central to the provision of services for people with dementia. Dementia care is extremely taxing, often involving constant care. The impact on the carers in relation to family conflict, negative feelings, carer depression and lack of time for other activities is significant.

Support services available to people with dementia, their carers and their families should be provided in a manner that acknowledges and addresses social needs. This includes support services for people with early onset dementia, socially isolated people with 12 dementia who either live alone or reside in a boarding house, people from the Koorie community, people from culturally and linguistically diverse backgrounds, and people who live in rural Victoria.

It is important to acknowledge and use the valuable contribution of carers by providing social support through various carer mutual support programs, such as telesupport and peer support. The increased availability of services for the individual support needs of people with dementia, their carers and their families would enable the provision of appropriate support services.

The current support services available to people with dementia, their carers and their families need to be identified. The needs identification undertaken for people with early onset dementia and for the low incidence and marginalised groups will assist in the development of flexible social supports.

Service providers will be supported to expand and develop quality social support services that are flexible in meeting a diversity of support needs.