5.10 Plan for future lifestyle, health and medical care

Through dementia, another illness or accident, there may come a time for all of us when we can’t make decisions about medical or health care, or lifestyle decisions, such as whether to move to residential care. You can appoint a person you trust, over 18 years old, who agrees to take on this role if needed.

Depending on what state or territory you live in Australia this person may be called an enduring guardian, an attorney, an agent, a person responsible or a decision-maker. This person is a substitute decision maker for the person living with dementia, when required for decisions about accommodation (e.g. if they need to move to residential care), health and medical care, and support services. You can read more about Powers of Attorney in the following article.

You don’t always need to be formally appointed to give consent for health care. The next of kin or ‘person responsible’, has the capacity to sign consent for example, an emergency medical procedure, if you or the person you support is not able to give informed consent.

However, if you haven’t formally appointed substitute decision maker, there are situations where the courts in Australia have the power to appoint one for the person with dementia. If this happens, the court appointed person may not understand their values or wishes. This process can be difficult and time consuming when decisions need to be made quickly.

You can work with the person you support to see a solicitor and appoint a person to be the substitute decision maker for health and lifestyle decisions. This process can be reasonably quick and is quite straightforward. People with dementia have told us that having control over who they nominate is important. Alternatively, you can download a form from your state or territory government.

Advance Care Planning Australia provides information for each state or territory, including a link to the relevant planning form. In some states or territories, the form needs to be witnessed by a solicitor, or clerk of the court, to say the person understands what they are signing. This is true for both the person nominating, as well as the person accepting the nomination. Completing the document yourself could lead to more issues if questions arise regarding the legitimacy of the document.

Writing down wishes, preferences and plans

Letting family and other people close to you know about what you want for your future medical, health care and lifestyle arrangements is important for us all, but especially important if you have a life limiting illness, like dementia. Plans for future lifestyle (e.g. to live at home, residential care, or somewhere else) and medical care can be documented in an advance care plan.

An advance care plan can have all sorts of information about what is important to you and the person you support. It can contain information about small things in daily life that are important and big things such as wishes about being resuscitated. It is not a legal document, but other people, especially substitute decision makers and family need to know about it and where it is kept so they can act upon it. You can change your advance care plan if your wishes and preferences change.

The national Advance Care Planning Support Service can be contacted on 1300 208 582 (Monday-Friday, Australian Eastern time) for more guidance.