Accessing the right dementia support

Key points:

• Support for people with dementia is available through multiple avenues, including through organisations such as Dementia Australia or Carer Gateway
• Carers can access a number of support networks that provide advice and information about caring for a loved one with dementia
• If your dementia requires more care assistance, you may need to look into Government options

Looking for support groups, dementia support services or Government help that can improve your daily living is important to navigate the next steps in your dementia journey.

Dementia research and support is growing every year with the Federal Government throwing more assistance to the cause through funding and research initiatives.

Whether it’s dementia for an individual over the age of 65 or younger onset dementia, there are support networks in place for the different stages of dementia, including their carers and loved ones.

Over the age of 65

Your local doctor or family general practitioner can be a good supplier of information for dementia support.

Talking to your doctor will help establish the next phase after the diagnosis as well as what support options there are to consider.

There are also multiple resources available online and through dementia organisations that can provide access to information you may need to deal with your dementia.

The biggest peak body organisation in the nation, Dementia Australia, has an abundance of information to access on their website. They provide different forms of support, whether that is in information, online forums or support groups.

Dementia Australia also facilitates the National Dementia Helpline, 1800 100 500. There is a lot of information available for dementia and the support you may need.

Additionally, Dementia Australia has counselling, programs, and dementia advisory services to help you through a new diagnosis.

The Dementia Pathway Tool was a project created by regional Victorian health institutes and national universities to create an easy to navigate information platform about dementia.

This site provides access to information about dementia, in all its stages, including booklets and tips for handling dementia.

Additionally, information is laid out on the website in a step by step dementia process, so you can understand what you might need to look at next in your dementia journey.

Dementia Support Australia (DSA), led by HammondCare, provides access to a huge library of dementia related resources and is at the forefront of delivering important dementia services across Australia.

DSA offers free 24/7 services and advice through its support line, 1800 699 799, and, on behalf of the Government, delivers support services to people with more challenging or severe behaviours due to their dementia.

The organisation also has a resource library for people with dementia and their carers to learn more about dementia.

HammondCare also founded the HammondCare Dementia Centre to be a provider of research and expert help to the aged care sector and those living with dementia.

The aim of the Centre is to assist people with dementia to continue living as independently as possible through dementia friendly design and items, and assist aged care services to deliver dementia friendly care and support.

The Centre also has the latest in clinical trials, if you want to participate in dementia research, and a knowledge hub that can direct you to helpful books and information about dementia.

Leading the world in dementia research is the University of Tasmania’s Wicking Dementia Centre, which provides world class dementia training to people in aged care and the general public while also supporting those who live with dementia.

There are free online courses available for people with dementia, their carers and their family to assist them in understanding dementia.

A campaign from Caring for Cognitive Impairment created an online resource library for people with dementia, their carers, families, and experts in aged care and health to provide the best practice dementia support possible.

Consumers are also able to share their personal experience dealing with health and aged care environments as a person with dementia or a family member helping a person with dementia.

Some local Councils in Australia provide dementia support services for those in their community who live with dementia.

For instance, The City of Tea Tree Gully in South Australia has a dementia advisory service that links people with dementia with necessary support, advice and information, as well as a dementia cafe that allows people with dementia or their carers to meet with people in similar situations for support, advice, companionship and social activities.

Many councils also organise and facilitate support group meetings for people with dementia. Contact your local Council to find out if they provide any dementia specific services.

Enabling Environments, an initiative of Alzeimer’s WA, is a dementia project assisting people with dementia and their families to make their home more dementia friendly, no matter where their home is.

It provides the do’s and don’ts of dementia friendly living for homes or apartments, nursing homes or retirement villages, hospitals or other medical environments.

Dementia Downunder is a grassroots support group run for people all over Australia. The website allows people with dementia and their carers to meet up and share their own experiences, ways to better live with dementia, and where to access extra dementia help.

Alternatively, the Dementia International Alliance is a non-profit organisation that provides exclusive membership to people with dementia globally. The Alliance represents people with dementia on the world stage and educates people about the disease, while also supporting those with dementia through peer-to-peer support groups.

Younger Onset Dementia

While Younger Onset Dementia is becoming more recognised, there is still difficulty around diagnosis and support. Read our guide on younger onset dementia on the Aged Care Guide.

Dementia Australia helps people with younger onset dementia through their Younger Onset Dementia Hub.

They also have a Younger Onset Dementia Online Forum to connect younger onset dementia people, families, carers and friends with others to share information.

The National Dementia Helpline on 1800 100 500 is another good way to find out what options are available to you after a younger onset dementia diagnosis.

Some people with younger onset dementia are also eligible for support and assistance through the National Disability Insurance Scheme (NDIS), contact the NDIS for more information.

The Dementia Pathway Tool also has booklets and resources for younger onset dementia, visit their website to access these resources.

A helpful practical resource guide is available on the website, the booklet explains younger onset dementia, how to manage dementia and presenting behaviours, how your family and friends can help and prepare, as well as how to plan for the future.

A similar guide was made by Dementia Australia, which provides a practical guide to people with younger onset dementia on how to live with their new diagnosis.

You are able to use the same dementia support group channels mentioned above but focus on finding groups that are assisting people with younger onset dementia.

Carer support

There are different support groups, organisations and services to access to provide yourself with information, support and rest you need to continue caring for your loved one.

Some States and Territories have carer support services, for example, Victoria has Carers Victoria or South Australia has the Carers Association of SA.

Carer respite is one option if taking care of your loved one has become too taxing or has left you with a number of chores to do.

Sometimes being apart from your loved one with dementia or having reprieve from full-time caring duties can do wonders for both the carer and the person receiving care.

There are Government-subsidised respite services you can access, including emergency respite. Carer Gateway is the place to go to organise any type of respite care you require.

Carer Gateway is also a good Government website to access a range of different information and support. They also have a free call support line on 1800 422 737.

Dementia Australia is another good resource to access, with information and services available for carers. They can also get you in touch with carer support groups in your area.

If the person with dementia you are caring for becomes too aggressive or starts exhibiting challenging behaviour, the Dementia Behaviour Management Advisory Service (DBMAS) might be a good option to figure out the next steps you need to take to help your person with dementia.

One step at a time

The best thing you can do when looking into dementia care and support is to take a deep breath and start slowly.

The Federal Government also provides a number of dementia support avenues, like in home care, Home Care Packages (HCPs), and nursing homes that cater for people with dementia.

While a dementia diagnosis can change things drastically, it doesn’t mean you should rush into dementia care.

Make sure you are getting what you need and want in regards to your care now and into the future.

What support services have you found beneficial to help you on your dementia journey? Tell us in the comments below.

Related content:

Dementia
The link between dementia and depression
Dementia behaviour changes and challenges