Planning Ahead with Chronic Conditions

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Everyone should plan ahead in case they are not able to make decisions about their health, or need care as they age. But this is especially important for people living with chronic health conditions.

It is important to start planning for the future as soon as you can after a major diagnosis. It’s a good idea to talk about your wishes with your family and health professionals, and make an Advance Care Plan using the resources on our Advance Care Planning page.

You will also want to think about:

Creating a will
Financial matters, such as mortgages, insurance, and superannuation
Legal matters
Care and housing arrangements

Support in the ACT

The following list has some resources that you can use. Inclusion on this list is not an endorsement by HCCA. These are suggestions only.

Wills and Legal Matters

Will kits are available from most post offices for a simple will. However, wills have to meet legal requirements so it’s a good idea to seek help writing your will.

Private lawyers can help with wills, EPOA and estate planning issues. Use the ACT Law Society search to find one.

The Public Trustee and Guardian has advice for making your will. They can help you to write a will or EPOA for a lower fee. You can download Power to Choose, a guide to Enduring Powers of Attorney, from their website.

It may be cheaper to prepare both your will and Enduring Power of Attorney at the same time.

Financial Matters

It is important to document your accounts and insurance information for your loved ones. You can use a template like this one: Personal Information Record and store it securely with other important documents.

Services Australia has a free Financial Information Service that can help you understand financial matters and your financial options.

The Money Smart website has tips to help you choose a registered financial adviser: Choosing a financial adviser – Moneysmart.gov.au. You can search for a registered adviser on the Money Smart website. Your superannuation fund or bank may also be able to help you find a registered financial adviser

Care and Support

People under the age of 65 can apply for disability support from the National Disability Insurance Scheme (NDIS). Learn how to apply.

Feros Care is the Local Area Coordinator for the NDIS in the ACT. You can contact them for support to understand the NDIS, and for help with your access application. Visit them at Suite 4, 2-6 Shea Street Phillip or call 1300 986 970.

People over the age of 65 may be eligible for My Aged Care.

Planning Ahead with Younger Onset Dementia

Younger Onset Dementia is the term used for dementia that occurs in people younger than 65.

It is important to start planning for the future before or as soon as possible after your diagnosis so that your decisions are recorded. It’s a good idea to talk about your wishes with your family and health professionals, and make an Advance Care Plan. You can use the information above to find support for financial, legal and care matters.

Some links that can help you plan ahead:

If you are concerned about your will or your Enduring Power of Attorney (EPOA) being challenged due to your diagnosis, you can get legal advice through a private solicitor or Legal Aid. You can ask your doctor to confirm that you have the capacity to prepare a legal will or EPOA. Read more at Planning ahead: Decision-making capacity and the law.

The Capital Health Network has created services guides for people with dementia and their carers available on their website.

Employment

It is a good idea to talk about dementia and your symptoms with your employer. You can also contact your union for information and support to keep working.

The Younger Onset Dementia Hub has more information about employment and younger onset dementia.

Information for family and carers

Support for planning ahead

Once a person with younger onset dementia has registered with Dementia Australia, they can refer you to . You can call (02) 6296 9900 to and ask for a younger onset dementia specialist support coordinator who can help with your questions about the NDIS.

Useful resources:

Advance Care Planning Australia: Making a decision for someone with dementia factsheet
Dementia Australia: Resources on Planning Ahead for Carers
The Carer Gateway: Advice on Planning for the Future

If the person you are caring for does not have a Statement of Choices and no longer has legal decision-making capacity, you should still involve them in making decisions as much as possible. This is called supported decision-making. For help supporting decision-making, call ADACAS on 6242 5060 or visit Supported Decision Making – ADACAS

You can record your understanding of their wishes using the Statement of Choices (No Legal Capacity) form.

Caring for yourself

Supporting a loved one with dementia can be take a lot of energy and time for you as a carer or family member. It is important to think about support for yourself as well.

Carers ACT provides support for carers in the ACT such as respite, counselling, and social activities. You can register with them online. They have two cottages dedicated to respite care for people with dementia, allowing carers to take a break.

The Carer Gateway can support you to get tailored support and counselling. Call 1800 422 737 or visit the Carer Gateway website.

If you need advice, support or connections to services, call the National Dementia Helpline on 1800 100 500.

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