Information for individuals
As your dementia gets worse, you may find it harder to make decisions about your health care and communicate those decisions. Would your family and doctor know what you want or don't want with your health and personal care?
Advance care planning can help you prepare for the future. The first (and most important) step is just having a chat about your health and ideas around health care. Letting everyone know what you want is the best way to have a voice even if you become too unwell to speak for yourself.
Benefits of planning ahead
Planning ahead involves thinking about, talking about and sometimes writing down what you want to happen in the future. Planning ahead makes it easier and less stressful for family members. It can help to make sure your preferences are known and followed. It allows you to choose who can make decisions for you.
Importance of discussions
Talk with your family and anyone else who may make decisions for you in the future, so they know what is important to you.
Talk about:
- preferences for future care, lifestyle and health
- how you go about making decisions
- your concerns and hopes for the future.
This information can help guide them in the decisions they may need to make. Find out more about starting the conversation.
Appointing a substitute decision-maker
If you are unable to make a decision in relation to your care or medical care, someone else will be asked to make those decisions. This person is called a ‘substitute decision-maker’. If you have not appointed someone, there are laws in each state and territory setting out a priority order of decision-makers.
However, you can appoint a different person if you want to. This does not have to be a family member, it could be a friend. It’s important to speak with your substitute decision-maker about what is important to you.
Documenting your preferences
You can complete documents that will make it easier for your family. It is best to complete any documents early as you need to be legally competent. Being competent means you are able to understand the document you are signing and the implications of it. The documents and the terms used are different in each Australian state and territory.
Advance Care Directives
Your preferences can be written in an Advance Care Directive to give them greater authority. Advance Care Directives are legally recognised. They can include information about your future care, lifestyle and health care preferences. Recording your preferences can help those who will be asked to make decisions. It will help them to discuss your preferences with doctors or with other family members.
Getting help
Dementia Australia provides information to help people and families prepare for the possible loss of capacity or with a diagnosis of dementia.
Printable guides
We have a printable guide that may be useful for people with dementia when considering advance care planning.
Graeme's story
After years of declining health, Graeme’s Alzheimer’s diagnosis still came as a blow to the family. His wife Sarah, son and daughter rallied around to provide the support and attention he needed.
In the years leading up to Graeme's diagnosis, he had started the difficult, but important conversation about what he would want regarding his future health care. This planning proved to be invaluable when he was nearing the end of his life.
Advance care planning and dementia webinar
As part of National Advance Care Planning Week 2023, Advance Care Planning Australia collaborated with Dementia Australia for a free, one-hour webinar to help people learn about advance care planning.
The webinar and Q&A were tailored for people living with dementia, their families and carers, and explored how to effectively prepare and plan for future health care decisions.
View the webinar here.
Information for health and care providers
People with dementia face significant challenges in planning for future care. As dementia progresses, a person’s capacity to make and communicate decisions about everyday life, health and end-of-life care will reduce. Complex health and personal decisions will then often have to involve family members or carers who may be unsure about the preferences of their loved one.
They may receive limited access to palliative care services, inappropriate use of antipsychotic medications and potentially futile treatments they may not have wanted including hospitalisation, intravenous therapy, and tube feeding.
Advance care planning is a key way to improve the quality of care delivered to people with dementia. It has been linked to lower rates of hospitalisation and increased use of hospice services among people with dementia. It can also reduce stress, anxiety and depression in relatives.
Engaging in advance care planning early
Ideally, advance care planning conversations would begin before or soon after the diagnosis of dementia. It's recommended that people with dementia start advance care planning as early as possible to make sure they can be meaningfully involved in decision-making before significant cognitive decline.
Voluntary process
Remember that engaging in advance care planning is a voluntary process. Some will prefer to defer decision-making to others.
Advance care plan for a person with insufficient decision-making capacity
When a person has insufficient decision-making capacity to complete an advance care directive, an alternative advance care plan can be used. This is not a form that is able to give legally-binding consent to, or refusal of treatment. This plan can be used to guide substitute decision-makers and clinicians when making medical treatment decisions on behalf of the person, if the person does not have an advance care directive.
The preferences they shared in the past may play an important role in decisions. Or their substitute decision-maker can make those decisions on their behalf.
This form can be used nationally but when an advance care plan form exists in a particular state or territory, we recommend using that form.
Online Courses - Advance Care Planning Australia Learning
We have online learning modules covering advance care planning and dementia, as well as other topics. Our learning website offers health and care professionals, students, substitute decision-makers, and individuals and their family the opportunity to study advance care planning through free online learning modules.
Visit ACPA training and education
The Advance Project Dementia
Advance Project Dementia provides free, practical, evidence-based training and resources that make it easier for aged and primary care professionals to initiate end-of-life conversations with people living with dementia. Find out more.