Dementia - early planning

As your dementia progresses, you may no longer be able to make decisions on your own. It might be hard to think about, but by planning ahead and communicating your decisions, you can make sure your wishes are respected.

Deborah Sullivan explains Advance Care Planning and how it can help you make health care decisions in this free Dementia Australia expert video webinar.

Planning ahead gives your loved ones the information they need to make difficult decisions on your behalf. And it means you can feel confident that the decisions other people make for you, like agreeing to different treatments or care, are those you would choose for yourself.

It’s something that can provide immense peace of mind for you and your loved ones. These are some useful steps and documents as you plan for your future.

Plans you might need to make

Realistically, “planning ahead” can be anything you want it to be. But here are some important decisions you should consider and communicate as soon as you feel ready,

Finances: consider how you can set up your finances to run smoothly in the future. If you have a partner, are they a joint signatory on all your accounts? Can someone else make enquiries on your behalf at the bank or Centrelink? Are all your financial documents — your mortgage, insurance policies and superannuation — up-to-date and easy to find? Have you spoken to a financial adviser to plan for your future needs?

Legal matters: think about whether you want to make any changes to your will. Is your will up-to-date? Is it easy to find?

Medical care: work through your preferences for medical care and treatments, including end-of-life planning.

People or organisations that can help you with making decisions about medical treatment include:

• a solicitor
• the Law Institute, Law Society or Legal Aid
• the Public Advocate or Public Guardian
• Dementia Australia.

Work: if you’re still working, plan out what you want to do. Do you want to continue working, or finish up? If you want to stay, how can you make it more manageable? Our Work and dementia page has advice and guidance.

Care arrangements: think about the kind of care and assistance you might want in the future. For example, do you want to stay at home as long as you can? Can you live with a family member? Or will you move to residential care? Our Care Options pages have more information.

Decision-makers: consider who you want to make financial, healthcare and lifestyle decisions on your behalf. This person (or people) is often referred to as a substitute decision-maker. Our Deciding who can speak for you page provides guidance on choosing a decision-maker.

Talk these decisions through with people you trust: family, a close friend, or a legal or financial adviser. Talk to your doctor about medical decisions, as they’ll have a good understanding of your health and can help co-ordinate your care.

Margaret Crothers and Halil Ozbeyazli discuss supported decision making and aged advocates in this free Dementia Australia expert video webinar.

Dementia expert webinar: understanding capacity and decision making, with Margaret Crothers

There is more information on recording wishes for future care and related matters in the section on advance care plans.

Communicating your wishes

Once you’ve made your decisions, tell the key people in your life, particularly those you’ve chosen as your decision-makers.

It can be difficult to talk to your loved ones about your future. You might be worried that you’ll upset them, or you might not know where to start. But talking about your plans helps your loved ones understand your values and choices, and gives them confidence when they’re making decisions for you later.

These are some tips to help you through the discussion:

Prepare for the conversation: work out what you want to talk about. Writing down key points can help. If you’re unsure how the conversation will go, you could practise with someone else first.

Choose a time and place: find a time when neither of you are distracted. Choose a place that’s quiet and relaxing.

Have an open and honest conversation: raise the subject clearly and confidently. Explain why it’s important to you, and what will happen if you don’t discuss these issues.

Prepare for their reactions: be prepared for them to disagree or feel upset. Expect silences and don’t offer reassurance too quickly, as this can shut discussion down. If they’re not comfortable talking, ask them if they’d like to discuss it later.

Decide on next steps together: try to end the conversation with some practical outcomes. You might agree to talk in a week, for example, or they could read some information you’ve found for them. You might also follow up any issues with a doctor, financial adviser or lawyer.

You don’t need to have one detailed conversation where you discuss everything with your loved one. You might choose to have several small talks instead.

Documenting your decisions

Writing down your wishes makes sure there’s no doubt or disagreement about what you want later. You can do this informally by writing a letter or making a recording.

There are also legal documents that formalise your decisions and allow people to act on your behalf. There are some variations between different states and territories, but these are the key documents:

Advance Care Directive: this communicates your values, preferences and directions in relation to future healthcare and treatments. Advance Care Planning Australia provides more detailed information.

Enduring Power of Attorney: an Enduring Power of Attorney allows you to appoint one or more people to make financial or legal decisions for you. In some states, an Enduring Power of Attorney is also used to appoint a medical decision-maker.

Enduring Guardian (or Medical Treatment Decision-Maker): this document allows you to appoint one or more people to make medical and healthcare decisions on your behalf.

Will: Your will sets out who will inherit your assets (such as your money or your house) after you die.

The Victorian Public Advocate can provide information and guidance on preparing these documents.

Sarah Breusch discusses the legal documents you may wish to consider after a diagnosis of dementia in this free Dementia Australia expert video webinar.

Learn how to tackle wills, guardianship, power of attorney and be clear about the legal processes in this episode of the Hold the Moment Podcast: Future planning.

Reviewing your plans

Planning ahead doesn’t just happen once. It’s more like a series of discussions and actions over time. Things change, and you’re free to alter your plans or decisions whenever you want.

Review your plans regularly to make sure they’re up-to-date and still reflect your wishes. You should also review your plans if:

• you’re diagnosed with a new health condition
• your health deteriorates or you’re less able to live independently
• your support structures change (for example, if your partner or carer dies)
• someone who was going to be your substitute decision-maker isn’t able to do this anymore.

Dementia Australia support

When I was diagnosed with Alzheimer’s (disease) I had never been so scared in my life […] I am happy to say that I have received amazing support from my family, medical team and Dementia Australia.

Linda, living with young onset Alzheimer’s disease

Whatever your experience of dementia, we're here for you. You can contact the National Dementia Helpline any time of the day or night for information, advice and support.

Where to get help (key organisations with web links and phone numbers):

• Your GP
• The National Dementia Helpline, 1800 100 500
• NDIS: the National Disability Insurance Scheme: available if you’re diagnosed with dementia when you’re under 65.
• My aged care: support in navigating decisions around aged care.
• Carer Gateway: emotional and practical services for carers.
• Dementia Behaviour Management Advisory Service (DBMAS): 24/7 advice for people caring for someone with dementia.