Better health and ageing for all Australians

Dementia

Information and services for people living with Dementia

Information on where people living with dementia can go for assistance and support.

In this section:

A diagnosis of dementia can be a shock and a confronting thing to face. After initially being diagnosed with dementia, you may experience a range of emotions and feel at a loss as to what to do next. Getting information and advice about your condition, prognosis and options for the future will help you to adapt to and manage the changes that come with a dementia diagnosis.

It is important to look after yourself and keep involved and active and maintain your normal activities and daily routines as much as possible. There are also a diverse range of supports and services that can assist you to manage your lifestyle and independence for as long as possible. Contact 1800 200 422, this number can provide information on a range of aged care services and supports available locally and nationally. Coordination and advice can also be provided to access respite services, counselling and emotional support for carers.

Coping with a dementia diagnosis

It may seem overwhelming to think about what you should do once you have been diagnosed with dementia. Three things to consider are:
    • Taking control - by understanding what will happen to you and finding out what can be done to manage the coming changes
    • Planning ahead - in relation to living alone, driving, work, money matters and legal issues
    • Talking to family and friends - what do you want to tell them and how can you discuss and understand what is happening.
There are a number of training courses, workshops and seminars available for both people with dementia, carers and family and friends to help understand dementia, how to deal with memory loss issues and management techniques.

There is also a range of services available to assist you in taking control of your condition, including counselling, information and training, service referrals and services to help you to maintain your social and community connections, i.e. transport and social groups.

While it is important to maintain your life and lifestyle for as long as possible, it is also important to prioritise and plan ahead for your future as your dementia advances. It may take several years for someone to progress to the final stages of dementia, so it is important to plan ahead and make sure you and your family can manage future changes and decisions. It is important that plans are made in the early stages of dementia as in the final stages, people may not have the capacity to make their own decisions or informed choices about their personal care and management including medical treatment, financial or legal decisions.

It may be a good idea for you to talk to your family and care providers as early as possible about who should make these decisions and agree on what should be done in particular circumstances.

All States and Territories have options about how you can appoint a Power of Attorney. This allows someone else to make decisions on your behalf. These decisions may include your care and legal and financial choices but you can determine what and how the decisions are made.

The person who is appointing a Power of Attorney needs to be able to understand the implications and consequences of what they are doing or the appointment will not be legally valid. For this reason it is important to make these decisions sooner rather than later.

The process for the appointment of a Power of Attorney is different in each State and Territory. Further information about the process in each State and Territory is available from the links below: Top of page

Care Planning

Good planning can make many aspects of living with dementia easier and less stressful. Whether it is planning for the near future or longer term planning, it will help both you and your family to know what is coming, take control in advance and have strategies in place to deal with particular situations. By discussing and putting in place your future care plan and wishes you are helping to manage your care needs whilst minimising the stress placed on you and your family.

Your care plan may include:
    • Short-term respite care – having the necessary assessments and enjoying regular respite care that meets your care needs through in-home or residential respite. Regular respite care can also make the transition to residential care in the later stages of dementia easier for you and your family.
    • Long term care – can include community care options such as the Extended Aged Care at Home Dementia program and residential care options. Making the transition to long-term residential care can be one of the most difficult decisions people with dementia and their families have to make. It is important to be aware of and discuss your options so that when the time comes for permanent care, you and your family can feel assured that you are taking action which respects everyone’s wishes and meets everyone’s needs.
Examining care options can be confusing for you but is important to ask questions and work out the most appropriate care for you. There are a number of services and supports available to help you in finalising your care plan.

National Dementia Helpline and Referral Services

The National Dementia Helpline provides a first point of contact to:
    • support people with dementia, their families and carers
    • provide specialist advice to people living with dementia, their families and carers, health care professionals and the general public
    • facilitate referral to other services
    • distribute information products
The Helpline funded by the Australian Government and is managed by Alzheimer’s Australia and is available on 1800 100 500 (Free local call. Calls from mobile and pay phones may incur extra charges). You can contact the Translating and Interpreting Service (131 450) if you would like to contact the Helpline in a language other than English.

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Dementia and Memory Community Centres

The Dementia and Memory Community Centres are funded by the Australian Government and managed by Alzheimer’s Australia. Dementia and Memory Community Centres are located in all capital cities and in some other cities in each State and Territory in Australia. Outreach programs provide access to people who live outside these cities.

The Dementia and Memory Community Centres cater for people who are worried about their memory, people who have been diagnosed with dementia and the family and carers of these people as well as members of the broader community. Services include counselling, recreation activities, education courses, library and information services.

You can locate the Dementia and Memory Community Centre nearest to you by calling the National Dementia Helpline managed by Alzheimer’s Australia on 1800 100 500 (Free local call. Calls from mobile and pay phones may incur extra charges).

Early Intervention and Counselling

The Australian Government funds Alzheimer’s Australia to provide and promote early intervention and counselling programs and services and resources to support people living with memory loss, their families and carers. These include:
    • one to one and small group counselling
    • access to support groups
    • early intervention support for people with early stage dementia and their carers through programs such as the Living with Memory Loss Program
You may access these programs and services by contacting the National Dementia Helpline managed by Alzheimer’s Australia on 1800 100 500 (Free local call. Calls from mobile and pay phones may incur extra charges).

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Information, Awareness, Education and Training

The Australian Government funds Alzheimer’s Australia to provide and promote education programs, services and resources that aim to:
    • improve awareness and understanding about dementia and the services available to people living with dementia, their carers, families, service providers and health professionals; and
    • increase the skills and confidence of people living with dementia, their carers, families, health professionals, volunteers and community contacts.
Information and awareness raising activities include:
    • Help Sheets including in languages other than English;
    • national and international conferences to provide awareness raising and information sharing forums as well as opportunity for consumer input;
    • accredited training in Certificate III competency units for aged care workers such as Dementia Competency CHCAC15A, that is also available for families and carers;
    • non-accredited six week courses for family carers and other participants;
    • short courses for aged care workers;
    • community education sessions; and
    • a range of other activities such as one day family carer courses.
You can access these programs and services by contacting the National Dementia Helpline managed by Alzheimer’s Australia on 1800 100 500 (Free local call. Calls from mobile and pay phones may incur extra charges).

Dementia Behaviour Management Advisory Service (DBMAS)

A DBMAS has been established in each state and territory to provide appropriate clinical interventions to help aged care staff and carers improve their care of people with dementia where the behaviour of the person with dementia impacts on their care. The DBMAS program provides targeted services for people with dementia who are seeking or receiving care through Australian Government funded aged care services, as well as their carers and families. The program also supports other clinicians, staff of mental health services for older people and allied health services. DBMAS core functions include:
  • Provision of information and advice;
  • Undertaking assessments and short-term case management including mentoring and modelling management techniques; and
  • Delivery of tailored information and education workshops.
DBMAS offers 24 hour a day telephone support call 1800 699 799 (Free local call. Calls from mobile and pay phones may incur extra charges).

Dementia Community Support Grants – Round Four

On 9 December 2010, the Minister for Mental Health and Ageing, the Hon Mark Butler MP announced the Dementia Community Support Grants – Round Four.

The Program provides funding for local community projects to improve dementia literacy, encourage innovation in the dementia care sector, bridge social gaps and encourage the social participation of people with dementia, their families and carers across Australia. The first three grant rounds have provided funds for over 150 projects at a cost of $6.3 million.

These Grants are for up to 12 months in duration with funding of up to $50,000 per Grant.

Applications for Round Four of the Grants opened on 9 December 2010. Applications close at 2pm Thursday 10 February 2011. However, the Department encourages organisations affected by the recent floods and environmental events to request an extension from the current deadline to 2pm Thursday 3 March 2011. For information on how to apply for an extension veiw Addendum 3. For more information on the Grants program including eligibility criteria and how to apply view Tenders and Grants.

The Extended Aged Care at Home Dementia Program

The Extended Aged Care at Home Dementia (EACHD) program provides packages of high level care and support to older Australians who experience behaviours of concern and psychological symptoms associated with dementia to assist them to remain living in their own homes.

More information about the EACHD program and other community care options can be found under Home Based Care on the Department’s website.


Dementia Booklets

Living with Dementia - a booklet especially for people that have been diagnosed with dementia

Dementia - The Caring Experience - a guide for families and carers of people with dementia

Delirium in older people – this booklet is about Delirium, a term used to describe changes to thinking and behaviour that occur over a very short time

To order these booklets or any other Department of Health and Ageing - Dementia resources please contact National Mailing and Marketing on (02) 6269 1000 or email dementia@health.gov.au
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For more information and assistance

Ring…

National Dementia Helpline – 1800 100 500*
For Aged Care Information - 1800 200 422
Centrelink - 13 27 17
*Free local call. Calls from mobile and pay phones may incur extra charges.

Visit…

Aged Care Australia
Centrelink