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 deteriorate. Complex health and personal decisions will then often require the involvement of family members or carers who may be uncertain 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 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 associated with significant reductions in 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 have begun before the diagnosis of dementia. However, if that hasn't happened, it's highly recommended that people with dementia are engaged in advance care planning as early as possible to ensure they can be meaningfully involved in decision making.

Early planning enables the person with dementia to be included in key decision making about their future care prior to significant cognitive decline.

Voluntary process

It's important to recognise that engaging in advance care planning is a voluntary process and that some will prefer to defer decision-making to others.

Both advance care directives (completed by the person themselves) and advance care plans (completed by someone else on the person’s behalf) can play an important role in helping the person to live as well as possible.

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 some printable guides 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.

Read Graeme's story