A Comprehensive Guide to Dementia Advance Care Planning

Advance care planning (ACP) typically focuses on end-of-life. It’s a process of talking about, defining, and recording your wishes, in case you cannot make decisions yourself when the time comes.

However, end-of-life isn’t the only time you may lose the ability to make healthcare decisions. This can also happen in situations where cognition is compromised.

The guide below focuses on dementia advance care planning, as dementia is a common condition and presents unique decision-making challenges. As a result, regular advance care planning often won’t be enough. You can also obtain personalized information through our Advance Care Planning Consultations.

The Benefits of Advance Care Planning

Thinking about future medical and care needs is hardly the most enjoyable topic. Yet, the process is certainly worthwhile and offers many benefits.

• Decreases stress for family members. Giving family members an idea of what you want can make things more straightforward and much less stressful. This is powerful, as end-of-life decisions can be pretty overwhelming at times.
• People know your wishes. Despite common assumptions, family members may not know your healthcare wishes. After all, many of us have busy lives and don’t talk much about healthcare unless there’s a crisis. Advance care planning ensures that everyone is on the same page.
• Things are easier during a crisis. Talking about your wishes, signing paperwork, and getting everyone on board is so much more challenging when there’s a health crisis. The process can be incredibly exhausting and stressful, robbing families of precious time with the people they love. It’s much better to get everything organized earlier.
• Some issues can be avoided. Talking about the future helps you be aware of potential challenges, giving you the opportunity to make things better. For example, learning about dementia may help you recognize warning signs for when the senior can no longer be safely cared for at home.
• Promotes peace of mind. Many people find that discussing end-of-life helps them feel more secure and less afraid, even when the future is very uncertain.

Why Dementia Advance Care Planning Matters

Advance care planning normally focuses on end-of-life. However, there are some crucial reasons to specifically consider dementia-related challenges.

• Your ability to create legal paperwork is lost early. You can’t simply live in the moment following a dementia diagnosis and do the planning later.
• Most documents don’t talk about dementia. Traditional advance planning documents often don’t offer dementia-specific decisions and may not mention dementia at all.
• Family members mightn’t know your wishes. Even if your family members know you well, they’re probably unaware of your dementia-specific wishes. These wishes can vary considerably between people and aren’t always what your family would expect.
• Planning helps your family. Decision making for someone with dementia can be highly stressful and overwhelming. It’s even more challenging when your family doesn’t know what you want. It’s important to help them, as they may be making decisions for you for many years.
• Your decisions will affect your future quality of life. While much is unknown about the internal experience of dementia, it’s clear that aspects of the original person remain. As a result, your decisions can impact the level of distress and comfort you experience.
• Your decision maker mightn’t be who you expect. Close family members aren’t always available to act as surrogate decision makers, particularly if they experience a health crisis of their own. This can mean that someone else needs to step in, perhaps someone who doesn’t know much about your values and wishes.

Additionally, as we’ll discuss below, dementia has some unusual features that need to be considered. It’s quite different from other conditions that are covered within advance planning.

What Makes Dementia Unusual?

Dementia presents a fascinating situation. It’s one of the most common reasons for loss of capacity, yet advance planning documents typically don’t cover it. In fact, dementia is projected to affect more than 130 million people globally by 2050. Many of these people with dementia will be cared for by family members, especially in the early stages of the condition.

This means most of us will end up knowing someone with the condition, if we’re not diagnosed ourselves. As such, dementia isn’t something to take lightly.

1. Decision Making Capacity is Lost Early

Advance directives rely heavily on a concept called decision making capacity. This refers to a person’s ability to understand, appreciate, and process information about a situation, then express their decision.

For advance care planning, we’re generally talking about healthcare decisions. Such decisions can be complex and have far reaching consequences, so they involve a decent amount of mental processing.

Capacity for healthcare decisions is often lost towards the end of life or after an accident. Things are different with dementia because of how dementia progressively affects cognition.

Crucially, people with dementia often lose decision making capacity relatively early in the disease progression. This could even happen before their condition dramatically impacts day-to-day living.

2. There’s Limited Time for Conversations and Planning

Anyone diagnosed with dementia faces an additional challenge – time.

The time between dementia diagnosis and loss of capacity can be short, especially if the senior already has noticeable cognitive symptoms. There isn’t a lot of time to have conversations about care, sign paperwork, and also process the diagnosis.

It’s also impossible to predict exactly when someone will lose their ability to sign legal paperwork. This creates additional pressure and can make things even more stressful.

3. There Are Different Decisions and Transition Points to Consider

Dementia progresses slowly, so people can end up living for years with compromised cognition and limited decision making ability. Different stages of dementia also come with their own challenges, which may influence the decisions people make.

Examples of decisions

• When is it time to transition the senior to a memory care facility?
• When can the senior no longer safely live alone?
• Whether to go to the hospital or not for infections. This is highly relevant because in the later stages of the disease, people may end up repeatedly visiting the hospital (a process that is highly stressful and disorientating), to the extent that they spend more time in the hospital or recovering than they do in a good state. 
• Whether to allow a feeding tube or a ventilator. This becomes particularly relevant in the later stages of dementia, due to swallowing difficulties that can contribute to pneumonia. In such a situation, a feeding tube for nutrition and/or a ventilator for breathing may be recommended. However, some people may prefer comfort care in such a situation, especially as infections can occur multiple times.
• Deciding when to treat and not treat health challenges, especially in the later stages of dementia.
• When does the focus shift from treating the senior to providing comfort care?

Crucially, the risk of health issues and their recurrence is high in late stage dementia, while visiting the hospital can be incredibly traumatic.

Examples of transition points

• The initial dementia diagnosis
• The senior no longer recognizes family members
• Complex cognitive and behavioral dementia symptoms
• Decreased response to antibiotic treatment
• Problems with nutrition or hydration, particularly when senior can no longer feed themselves
• When quality of life is low and is unlikely to improve

4. Public Perception of Dementia

Most of us have heard of dementia and have some idea of the symptoms, but there’s a ton of misinformation out there, plus differences in assumptions about late stage dementia. For example, some people may not realize that dementia is fatal, while others may think that the disease might not progress into its later stages.

And… many people don’t want to know about the specifics of dementia, especially if they’ve been recently diagnosed. After all, the symptoms can seem pretty bleak. Sometimes it’s easier to push the topic away and focus on the moment instead. 

These knowledge gaps mean that many people don’t understand what might happen with dementia. They may not have had conversations about it with family members and certainly haven’t created the appropriate paperwork.

5. The Cognitive and Behavioral Shifts

While people with dementia do experience worsening cognition and associated behaviors over time, the condition is also highly variable. People with dementia on may display considerable swings in their function, appearing more present and aware at some times than others.

These shifts add to the complexity of the condition. They also make transition points hard to identify, especially when the person with dementia hasn’t provided instructions for their care.

How to Plan for Dementia

There are two crucial areas here: regular advance care planning and dementia-specific planning.

1. Advance Care Planning

Advance care planning includes conversations about the future and specific legal documents. Such planning helps ensure your wishes are followed if you lose capacity. There are two main documents to consider:

• Living Will. This allows you to describe the type of care you want in different situations. These documents typically focus on end-of-life wishes, although some may contain additional situations as well.
• Power of Attorney (PoA). This allows you to nominate a specific person to make decisions on your behalf. A Healthcare PoA is crucial for healthcare decisions, although you could have other types of PoAs as well.

There are some other documents, including POLST forms and DNR orders. However, these are most relevant when people are seriously ill. They’re also not essential for early planning, as a healthcare proxy can help set the paperwork up when needed.

Requirements for Living Wills and PoA vary between states. But, you’re generally deciding between pre-prepared documents and creating your own.

If you create your own, you’ll need to make sure the paperwork meets the legal requirements for your state. You may also need to research to get an idea about the information you want to include.

Pre-prepared documents are often easier, as they guide you through the process and already meet legal requirements. Most also allow you to add extra information, to help tailor the document to your specific needs. We recommend using Five Wishes or the forms offered by your state.

2. Dementia Specific Planning

Now we come to the dementia side of things.

Here too, you can write your own document or use a pre-prepared one. The dementia information can then be attached to your Living Will and used to help guide decisions.

The Dementia Directive (featured in The New York Times) is currently the best example of a pre-prepared dementia form. This provides details about dementia, along with care decisions for three distinct dementia stages. The document is especially useful for people who don’t know much about dementia, as all the crucial information is provided.

An alternative approach is to avoid writing about specific medical treatments and focus on the spirit of the care you want instead. For example, instead of stating that you don’t want artificial respiration, you might say that you don’t want to spend your final days hooked up to machines.

This shift in language gives your healthcare proxy more flexibility. Focusing on outcomes also allows them to decide the best approach based on the situation, instead of being bound by highly specific requests. This is powerful, as healthcare decisions often aren’t as straightforward as they seem on paper.

Other Considerations  

How to Reduce the Risk of Issues

People with dementia may still be able to complete advance directives, as long as they retain decision making capacity. However, a dementia diagnosis does increase the risk that any paperwork will be contested later.

Because of this, it’s wise to obtain evidence of the senior’s cognition, like a letter from their physician. It could even be worth pursuing multiple letters.

Talking to Family Members

It’s also important to engage with family members, even if some are in denial about the dementia diagnosis. Such conversations can help prepare family members for the future and help the family to work as a more cohesive unit.

Plus, if the senior has talked about the same general values and wishes with multiple family members, these wishes are more to be respected, decreasing the risk of family conflict.

What if Capacity has Already Been Lost?

A person needs to meet certain cognitive requirements to create legal documents. So, what if the senior has already gone past this point, but doesn’t have appropriate paperwork?

• If they have nothing in place, then the state will likely appoint a surrogate or a guardian to make decisions, decisions that should be based on the senior’s values and best interests.
• If they already have advance directives, then these remain as they are. The senior isn’t able to modify them any further.

However, seniors with dementia can still play a role in their decision making, especially in the early stages of dementia. They can also still complete a Living Will or a Dementia Directive. Such documentation won’t be legally binding, but could still be used to guide family members.

Be Realistic About the Future

Finally, it’s important to talk about hopes versus reality.

Advance care planning focuses heavily on healthcare wishes, but there can be a large gap between what someone hopes for and what is actually achievable. This is partly because healthcare is much more complex and unpredictable than can ever be covered in an advance directive.

As a result, it’s crucial to talk about values as well as specific decisions. If the situation ends up quite different than the senior imagined, their values will be the family’s main guide.

For example, some people may hope or assume that their spouse will provide hands on dementia support for the duration, allowing the person with dementia to remain at home until they die. Yet, providing 24/7 care for some in the later stages of dementia can be incredibly difficult. Attempting to do so also mightn’t be safe for either the person with dementia or their caregiver.

When Should You Plan for Dementia?

In theory, advance care planning should begin close to when an individual is first diagnosed with dementia.

Planning this early is crucial, as people can lose decision making capacity faster than expected and could end up with little documentation. Plus, without in-depth conversations about dementia care, family members may not know much about the senior’s wishes.

Doing this in practice can be challenging, as it takes time to come to terms with a serious diagnosis. Some people may want to live in the moment for as long as possible, even if it makes their future uncertain. Others may know little about dementia and may not understand how the condition progresses.

Planning Well in Advance

Of course, you don’t need a dementia diagnosis to start planning.

The best approach may be to include dementia decisions as part of regular advance planning – regardless of your age. This way you get to think about the course of dementia and possible decisions when there’s little emotional loading.

Learning about dementia early makes a lot of sense, anyway. Even if you’re never diagnosed with dementia, a friend or family member may be.

Who is Legally Responsible for Healthcare Decisions?

In practice, healthcare decisions will often be a team effort, where the appointed decision maker consults with medical staff, other family members, the PWD, and any other stakeholders. The amount of input and consultation will be determined by the decision maker and situation. 

Crucially, people with dementia are likely to have more input in the early stages of dementia, as they may still understand much of the situation and the decisions to be made. Their ability to participate is likely to decrease as their dementia progresses.

From the legal perspective, there is generally one person responsible for a person’s healthcare decisions. Who this is will depend on the situation, as you can see below.

The PWD

The person with dementia still has the right to make their own decisions until they’re assessed as having lost decision making capacity. That assessment is typically done by their primary physician, although sometimes a court-based assessment of competency may be completed instead. 

As we’ve discussed elsewhere, capacity is complex.

• Some people act in ways that make their cognition seem better than it is (a practice also called showtiming). Others may learn to tell people what they want to hear to avoid suspicion.
• Capacity also varies, so a person may seem fine in the doctor’s office but lacks capacity when it’s time to make medical decisions. 
• Such complexity can create a period where a person isn’t completely capable of making their own decisions, but is still seen as having this capacity. In this situation, family members may need to get creative in protecting the senior while advocating for assessments of capacity/competence. 

The Healthcare Proxy

Ideally, the person with dementia will have chosen their own decision maker by using a Power of Attorney form. This person is their healthcare proxy and will often be a spouse or adult child, although someone outside the family could be chosen instead. 

The healthcare proxy’s authority begins once the person with dementia is assessed as lacking capacity for healthcare decisions. 

The proxy uses the senior’s Living Will and their knowledge of their wishes to make healthcare decisions based on what the senior would want.

A Surrogate

If there is no Power of Attorney or the person named in it can’t do the role, then a surrogate may be chosen instead. The person with dementia’s spouse is often the first choice here, followed by adult children, then other family members. The exact order varies between states.

A Guardian

Sometimes the decision maker might be a court-appointed guardian instead. This most often happens when there are no available family members or when there are strong family disagreements. 

Guardianship isn’t ideal, as it is an expensive and time-consuming process. Still, it does appoint a legal decision-maker, which is crucial in some situations.

Final Thoughts

Advance care planning for dementia doesn’t need to be complicated. It’s similar to regular advance planning, except that you need to provide some dementia-specific information as well. A resource like the Dementia Directive is a powerful starting place, although you can also write your own version.