Planning ahead after you’ve been diagnosed with dementia

Planning ahead after you’ve been diagnosed with dementia

Receiving a diagnosis of dementia can be overwhelming, for both you and your family. When you feel ready, planning ahead is a helpful step to take as over time, you may not be able to think clearly and make decisions on your own.

Planning ahead allows you to prepare for the future (and have peace of mind about what will happen), make important decisions, create a written plan, and let people around you know what your wishes are, so they can support you in the way you want. You can also choose someone you trust to make decisions for you, when you are no longer able to.

Here are some ways you can start planning for the future after a dementia diagnosis.

Have a conversation about your future with your loved ones.

You may have been thinking for a while about what will happen if you lose the capacity to make decisions, or this may be the first time you are thinking about it. Either way, it’s important to talk about it with your loved ones or your GP. Then people will be clear about what you want, and be able to make decisions based on your wishes in the future.

Some things you may want to talk about are what treatments you would like as your dementia progresses; who will make decisions for you when you are unable to; what happens to your finances, and where you’d like to live.

Sometimes it’s difficult to start a conversation on these topics, so it can be helpful to write your thoughts down first, and choose a time and place when no one will be distracted. Try to end the conversation with practical next steps, or arrange to chat again at a later period.

Think about your finances.

A key part of planning ahead is doing some financial planning. Some of the important things you may need to consider (if you haven’t already) are:

  • putting together a will – this is a legal document that states what happens to your property and belongings after you die. You can get help creating or reviewing your will from a lawyer, community legal centre or a public trustee or advocacy service;
  • appointing an enduring power of attorney – you can appoint someone who is legally able to make decisions about your financial affairs when you no longer have the capacity to make decisions for yourself;
  • ensure your financial arrangements are up to date – e.g. superannuation and insurance. You may also want to make sure that important documents are able to be found by someone you trust, or you may want to have joint accounts for banks and utilities;
  • if you receive your pension, you may want to nominate someone to deal with Centrelink on your behalf.

Think about your health care preferences.

Advance care planning is making sure your loved ones and doctors know what your health and personal preferences are. It’s an important part of planning for the future, so you get the care you want if you cannot make decisions for yourself in the future.

Some decisions to think through are:

  • when you want the goal of medical treatment to change from prolonging your life to focusing on comfort and palliative care (especially when it comes to treatments that are invasive or intense) in the future;
  • Who you would like to legally appoint as a decision maker for health care and lifestyle decisions if you lose the capacity to make decisions because of dementia. This is called a substitute decision maker;
  • Advance care directive – you can formalise your advance care plan through a legally recognised advance care directive which puts your wishes in writing (sometimes this is called a living will).

Decide where you would like to live, now and in the future

Think about where you would like to live, especially as dementia progresses and you need help with everyday things. Where you live can depend on your financial resources, whether you have a family member or someone able to provide you with care, and whether you would prefer to move into a residential aged care facility or live at home.

If you would like to live at home for as long as possible, government-funded Home Care Packages are available to provide you with support, such as domestic assistance, personal care, medication management, transport and if needed, 24/7 care.

Dementia Caring provides high quality dementia care, tailored to each person’s unique needs. We collaborate with your loved ones, so together we can support you in the best way. For more information or to chat to someone about your situation, please get in touch.

Information in this article is based on Dementia Australia’s Start2Talk program. For more information, visit their website.

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