It’s never too early to begin thinking about advance care planning, but it’s especially important if a dementia diagnosis is involved. Since this disease is progressive, what might start as confusion or forgetfulness can lead to cognitive decline, making it difficult or impossible to make decisions, especially related to medical care. For this reason, timing is very important. 

Oftentimes, people don’t think about completing a healthcare directive until after dementia has progressed to the point where the patient can no longer make decisions for themselves. If you or a loved one receives a diagnosis of early-onset dementia, or if you have reason to anticipate the condition later in life, completing a dementia directive can make ongoing healthcare decisions much easier for those providing care. 

This guide to advance healthcare directive for dementia provides information about advance care directives in connection with dementia, including some answers to frequently asked questions.

Read more: The complete 2022 guide to caring for someone with dementia

Understanding advance healthcare directives for people with dementia

When someone with dementia reaches the phase of having lost capacity, their loved ones may have to make decisions on their behalf. Having those preferences in writing will make things easier for everyone involved. Below, we’ll outline what advance care directives are and how the process works when the person in question has dementia.

What are advance healthcare directives?

Advance healthcare directives are legal documents that outline what kind of medical care you’d like to receive if you’re unable to make decisions for yourself. For example, if you’re incapacitated, incompetent, or unconscious, your loved ones and your medical team will refer to these documents to determine what measures to take, based on your preferences. 

An advance healthcare directive generally has three sections:

1. Naming of a healthcare agent or proxy. This is a legal designation, by the individual, called the Principal, of who has the right and responsibility to make medical decisions on their behalf if a situation arises where they cannot make those choices for themselves. The person they name is called the Agent. In some states, this may be a separate document entitled “healthcare power of attorney.”
2. Preferred treatment choices such as cardio-pulmonary resuscitation (CPR), help with breathing, tube feedings, and so on. In some states this may be a separate document titled “living will.” 
3. Personal determinants such as faith-based rituals, family traditions, individual preferences, etc., which can guide loved ones and the medical team in making decisions for unanticipated situations. This section can also include details like where to receive care, financial plans, memorial or funeral information, and choices for your body after death.

It’s important to determine your state’s laws regarding healthcare directives for dementia, as it varies from state to state. This resource may provide forms compliant with the requirements in each state. 

Read more: What is advance care planning? ACP explained & defined

Advance directives and dementia

There’s now an advance care planning document designed specifically to allow for instructions regarding dementia. Called a dementia directive, this document isn’t legally binding on its own, but it can be added to a legal healthcare directive as part of the preferred treatment choices or the personal determinants. It is extremely helpful as a guide for those overseeing the long-term care of a patient with dementia. 

This document, like an advance healthcare directive, must be completed while the patient has full capacity. It cannot be completed on their behalf after the dementia progresses to the point where they no longer have capacity to understand the intent and use of the document. 

What is a dementia directive?

A dementia directive is a document for those with early stages of dementia, or for someone who anticipates a dementia diagnosis later in life. It offers the opportunity to record the goals of care you prefer in mild, moderate, or severe dementia while you still have the capacity to make those decisions for yourself. 

Those responsible for treatment can use this document, along with other relevant legal documents such as a healthcare directive, to determine how to address medical needs. Having your preferences in writing before you are incapacitated by dementia helps your loved ones when making difficult and emotion-laden decisions later in life.

What kind of things does a dementia directive cover?

Generally, a dementia directive is straightforward and simple — it asks you to define the goals of care at the different stages of dementia. Goals may change as dementia progresses, with mild, moderate, and severe levels indicating the level of capacity. It is best to have your dementia directive attached to an advance healthcare directive, where you can include preferences regarding topics such as at-home care, out-of-home placements, finances for your care, and experimental drug treatments. It may also be advisable to address how you’d like to navigate your driving privileges, future intimate relationships, healthcare agents, and more by writing this information into either your advance healthcare directive or your dementia directive. 

Frequently asked questions about advance directives and dementia

Below are some frequently asked questions that you may have about dementia and advance healthcare directives.

When should I start filling out advance care planning forms? 

The sooner, the better. A healthcare directive is a good idea for every adult, and since dementia can slowly deteriorate your cognitive ability, it’s a good idea to make plans in the early stages, before the disease progresses. This allows you and your loved ones time to discuss your goals of care and make the appropriate preparations. 

Who should I consult when making a dementia directive? 

In addition to working with your close family members to draft your directive, we recommend consulting with your healthcare professional, and, if appropriate, your attorney for further guidance. While a professional won’t be able to make decisions for you, they can offer advice based on their background and experience. Note that legally, you are allowed to create these documents without professional guidance. 

Is a dementia directive legally binding?

No, this document isn’t legally binding on its own, but it is still a great resource to complete, as it can provide insight into the type of treatment you would or wouldn’t like to receive. What’s more, it can help ease the stress on your loved ones who need to make decisions for you and give them peace of mind that they are honoring your wishes. It can be attached to a healthcare directive, which is legally binding, to ensure it’s given the same weight as your other healthcare instructions. 

Will those overseeing my care follow all of my instructions? 

Those making medical decisions for you will do their best to honor your wishes, but there may be logistical reasons for not following them exactly. For instance, if your preferred assisted facility doesn’t have space, they’ll need to find another option. Or in some cases, the medical facility might not offer specific procedures or treatments you choose, but your loved ones may work to meet your preferences as closely as possible. 

In addition, it is common for unanticipated medical complications to arise, requiring decisions that were not discussed earlier. In the case of disagreement, your healthcare agent has the legal right to make decisions on your behalf. If you do not name an agent, one will be chosen for you either by the medical team or by your state law.

While navigating a dementia diagnosis is challenging, a health directive for dementia, in combination with an advance healthcare directive can give you and your loved ones peace of mind when it comes to your long-term care, healthcare goals, and comfort. It may also help avoid the need for an expensive court process called conservatorship. Talking through future healthcare wishes and helping your loved ones understand your goals and the reasons behind them will ease the stress of having to guess in the future.