An Introduction to Advance Care Planning for Dementia

More and more people recognize the importance of planning for future healthcare needs. Without such planning, we risk having our health decisions made by people who don’t really know us or our wishes.

This type of planning is especially important for dementia, as a healthcare proxy, surrogate, or guardian becomes responsible for your healthcare decisions when you’re considered to have lost decision-making capacity. This decision-making capacity relates to your ability to understand the situation, weigh up variables, and make a rational decision. You can lose this capacity surprisingly early – sometimes years before the end of your life.

Advance planning for dementia allows you to record your wishes, helping to ensure your future care is what you hope for. 

What Is Advance Care Planning?

The term advance care planning refers to the process of planning for future healthcare, along with the specific documents you complete.

The most crucial two documents are the Power of Attorney (PoA) and the Living Will. The PoA designates your healthcare proxy, who is the person who makes healthcare decisions for you when you can’t. The Living Will provides details about your specific healthcare wishes.

Alternatively, you could use a form called Five Wishes. This combines a PoA and a Living Will into a single easy-to-read form. Your physician might also recommend additional forms, like a DNR and a POLST form (Physician’s Order for Live Sustaining Treatment).

Why You Need Advance Care Planning for Dementia

Most advance planning documents talk about what you want towards the end of your life, like if you are in a coma and are unlikely to recover. However, people with dementia typically lose capacity long before this point, making a regular advance care document unsuitable for many people with dementia.

The nature of dementia and the associated shifts in cognition also create specific challenges to be addressed.

For example, those in the late stage of dementia have an increased risk of health problems, including infections, which can lead to traumatic hospital visits. If such hospital visits become frequent, some people may wish to stop them and focus on comfort care instead. This stage of dementia can also involve difficulties with swallowing, where feeding tubes may be recommended for severe cases. This is another approach that some people may not want, especially due to the risk of harm.

Because dementia often progresses slowly, various transition points may be used to determine the treatment they should receive. These might include no longer recognizing family members, being unable to eat independently, or being unable to use the bathroom independently.

How to Include Dementia in Your Advance Planning

You don’t need a dementia diagnosis to start dementia-specific advance planning. In fact, it’s much better to do the planning early. That way, there are no questions about your cognition and no urgency to complete the paperwork.

If you have been diagnosed with dementia, try to do the paperwork as soon as possible. Many people wait, as this is an emotionally loaded topic. However, there’s no way to predict when decision-making capacity will be lost. You may not even notice some of the changes to your own cognition, so you won’t know when things start getting urgent.

Anyone with a dementia diagnosis should look for accompanying evidence of their decision-making capacity, such as a letter from your physician and any specialists. This is crucial, as your paperwork could get dismissed if there are concerns about your capacity when you signed it.

Create a Healthcare PoA

The first step is a healthcare PoA, which specifies the person responsible for your healthcare decisions (your healthcare proxy). Healthcare PoAs often come into effect when you lose decision-making capacity, although you can have them come into effect earlier if you wish.

Most states have a specific form you can use or you can use Five Wishes, which includes a Living Will as well.

As part of the process, you’ll need to think carefully about who your proxy will be. There are a few things to consider here, like finding someone who knows you well enough and also someone with enough emotional capacity to handle the role. 

Bear in mind that the healthcare proxy role can be highly stressful. There will be many decisions to make and the answers won’t always be straightforward. Because of this, it’s worth reassuring your proxy that they don’t need to get things perfect. You’re simply grateful that they will be there for you.

Have Conversations with Your Proxy

Your family can’t read your mind. It’s crucial that you’re on the same page about the care you want, along with your underlying wishes and values. These conversations take time and they’re an ongoing process, where your proxy will learn more about you as you go.

Part of the process should involve learning how dementia can progress and what may happen in the future. This is important, as many people don’t know much about the specifics of dementia and how the symptoms change. There may also be a reluctance to accept that it is going to happen that way for the person recently diagnosed.

Create a Living Will with Dementia-Specific Information

As we mentioned earlier, Living Wills don’t normally contain information about dementia. But, you’re still going to need one. Your state-recommended form or Five Wishes are both good options. The state version tends to be more precise and formal, while Five Wishes is designed to be easy and accessible.

Crucially, both forms allow you to attach extra information.

If you know what you want, you could write the details yourself on the Living Will or include them as an attachment. Otherwise, there’s a Dementia Directive that can be used as a supplement to a Living Will. 

This Dementia Directive breaks dementia down into three stages – mild, moderate, and severe. Each stage includes a description of symptoms, then the choice about the main goals for care. This style works well, as goals for care are likely to be different in the early stages of dementia compared to when symptoms are more severe.

Alternatively, you may want to talk to a lawyer and develop your own Living Will. This should meet your state requirements and contain information related to dementia and to end-of-life.

Things to Know About Advance Care Planning

It Isn’t Perfect

Advance care planning lets you record your wishes, but it doesn’t guarantee that these wishes will be followed. Healthcare is complex, especially as people are often dealing with more than one health issue at a time.

Some of your wishes may also end up being unrealistic or completely impossible, depending on the exact situation. For example, many people hope to die at home in comfort and minimal pain, yet die in the hospital instead. There’s also a good chance that you won’t be able to stay at home the whole time, as you would need 24/7 care in the later stages of dementia and many families lack the capacity for that type of care.

The Most Recent Document Wins

If you complete two valid PoAs, the most recent of these will be used. The same is true if you complete two Living Wills. Five Wishes also takes precedence over older valid Living Wills and PoA documents, as it contains both components.

Because of this, you should only be creating a new document if you need to.

You Can Still Express Wishes without Decision-Making Capacity

Losing decision-making capacity doesn’t automatically mean the person with dementia stops having a say in their own care. Physicians and family members will often look for signs of what you want, especially in the early stages of dementia.

Indeed, person-centered dementia care places high value on the needs and interests of each person, rather than treating them as a generic patient.

Final Thoughts

Advance care planning for dementia follows many of the same practices as regular advance care planning. The biggest difference is that people with dementia have a long period of lost capacity, so more instructions about care may be needed.

It also remains crucial to have plenty of conversations with healthcare staff and family members. Things go the smoothest when everyone is on the same page and has similar expectations.