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
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.
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.
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.
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.
Once a person with younger onset dementia has registered with Dementia Australia, they can refer you to Carers ACT. 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.
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