What is an Advance Decision (Advance Statement of Wishes)?

My mother was recently diagnosed with dementia and is still quite lucid. I heard about an Advance Decision and I'm not sure what it is or if it makes sense to deal with it now. How does it work and is it worth pursuing?

It is very sensible to consider this while your mother can still express her wishes. Discussing future decisions is not rushing anything; it is a gesture of respect for who she is.

Why it matters

In the early stages, a person still has the capacity to make decisions about their own care. An Advance Decision, or Advance Statement of Wishes, is a document where they record in advance which treatments they accept or refuse should they later be unable to communicate. Registering it early prevents these decisions from falling to the family during difficult times.

Practical strategies

• Choose a calm moment to discuss what is important to her in terms of care and quality of life.
• You can appoint a health and welfare attorney, someone trustworthy to make decisions for her when she cannot.
• The document is completed using a specific form and registered with the relevant national authority, often through a health centre or legal service.
• Involve your treating doctor, who can clarify clinical questions.

What NOT to do

• Do not decide for her or complete the document without her participation while she is able to express an opinion.
• Do not delay indefinitely: the capacity to make decisions can diminish over time.

When to seek professional help

Speak to your treating doctor for guidance on advance care planning and clinical options. Your local Alzheimer's association can also provide information and support. For general health service queries, consult your national health helpline.

"It was hard for me to start the conversation, but seeing that it was her will deciding lifted an enormous weight off me later." — Anonymous Carer