Understanding advance statements: a guide for dementia caregivers

Caring for someone with dementia brings many questions about how to provide the best possible care while honouring their wishes and personality. One of the most valuable tools available to help you in this journey is something called an advance statement. Think of it as your loved one's way of continuing to communicate with you when words might become harder to find.

What exactly is an advance statement?

An advance statement is a written document where the person you care for can express their preferences, values and wishes about their future care. It's their opportunity to share what matters most to them – from the small daily comforts that bring them joy to the bigger decisions about medical treatment.

Unlike some legal documents that focus purely on medical procedures, an advance statement is much more personal and comprehensive. It's where they can talk about their favourite foods, the music they like, whether they prefer baths or showers and how they like to spend their time. It's also where they can outline their feelings about different types of medical care and treatment options.

Why advance statements matter

When dementia progresses, there may come a time when the person you care for finds communicating their preferences challenging. An advance statement ensures that you and other caregivers – whether family members, friends or healthcare professionals – understand what's important to them. It helps you provide care that truly reflects who they are as a person.

The advance statement becomes a bridge between who they are now and who they'll continue to be throughout their journey with dementia. It reminds everyone caring for them of their personality, their likes and dislikes and their values.

What can be included?

What makes an advance statement so helpful is that it's entirely personal to the person with dementia. They might want to include:

Daily life preferences: Do they prefer tea or coffee in the morning? Are they an early riser or a night owl? Do they enjoy listening to rock music or prefer the radio? These details help you and other caregivers create an environment where they feel comfortable and at home.

Social and emotional needs: Perhaps they love having visitors or maybe they prefer quiet time. They might want to mention if physical touch is comforting to them, or if they have specific religious or spiritual practices that bring them peace.

Medical wishes: They can express their feelings about different types of treatments, medications or interventions. While an advance statement isn't legally binding like an advance directive, it provides valuable guidance to healthcare professionals.

Important relationships: They might want to mention the people who are most important to them and how they'd like those people to be involved in their care.

Fears and concerns: It's completely natural for them to have worries about the future. When they share these, it can help you and their care team address them thoughtfully.

How it differs from other documents

You might be wondering how an advance statement relates to other planning documents. An advance directive (sometimes called a living will) is a legal document that specifically addresses medical treatment decisions. A lasting power of attorney appoints someone to make decisions on behalf of the person with dementia.

An advance statement is more like a detailed letter to future caregivers. While it doesn't carry the same legal weight as these other documents, it's incredibly valuable because it captures the full picture of who your loved one is and what matters to them.

Creating an advance statement

Start by talking with them about what brings them comfort and joy right now. You might have conversations with other family members or close friends too – they might remind you of preferences that hadn't been considered.

The document doesn't need to be written all at once. Many people find it helpful to add to the advance statement over time as they think of new things or as circumstances change. The document should feel like a true reflection of the person you care for.

Keeping it current and accessible

An advance statement is most helpful when it's up to date and easy for people to find. Review it periodically and update it if their preferences change. Make sure copies are with family members, their doctor and anyone else who might be involved in their care.

Some families keep a shorter version as a summary that can be quickly referenced, while maintaining a more detailed version for comprehensive guidance.

The benefits of an advance statement

Creating an advance statement provides real benefits for your loved one and everyone involved in their care. For the person with dementia, it offers reassurance knowing that their voice will continue to guide their care. For you and other caregivers, it removes the uncertainty of guessing what they would want and gives you confidence that you're honouring their wishes.

An advance statement ensures that the essence of who they are remains at the centre of their care, no matter what the future holds. It's a powerful way to help maintain their dignity, express their autonomy and ensure that their journey is as comfortable and meaningful as possible.