How to Handle Advance Directives When a Loved One Has Dementia

Advance directives—legal documents that allow one to express their end-of-life wishes regarding finances and medical care—are important for all of us to consider as we age as a way of retaining decision-making authority no matter what happens to us. However, end-of-life can be a very difficult thing to confront. Even though advance directives are designed to help us protect our wishes and the futures of our loved ones, it's easy to delay making them until a health crisis happens.

But what if that health crisis is dementia? Is it possible for someone with dementia to create advance directives if they haven’t already? What if they have an existing advance directive that needs to change to reflect new circumstances? Won’t it be easy for someone with bad intentions to manipulate someone with severe dementia into leaving them money or granting them Power of Attorney for Finances?

If you’re a caregiver helping a loved one navigate this difficult situation, here are some questions to consider:

What if my loved one is diagnosed with dementia and doesn’t have advance directives in place?

If your loved one doesn’t yet have advanced directives in place, it may not be too late. Advance directives can still be made if a person has legal capacity, or the required level of ability to make decisions or judgments with full understanding of meaning and consequence.

Many people in the early or even moderate stages of dementia still have this capacity. That’s why it’s important to get in touch with legal professionals as soon as a diagnosis is received to get these essential documents in place. Any decisions regarding finances and medical care will be pivotal for a loved one's care moving forward and will serve as important guidelines for caregivers to follow. It can also start conversations about care preferences not necessarily outlined by advance directives, such as who your loved one wants to help out in certain situations, and what kinds of professional support they are open to.

Some states also have a special advance directive called the Alzheimer’s Disease/Dementia Mental Health Advance Directive, specifically for those who have deceived a diagnosis and are still of sound capacity to make decisions. This document takes into account dementia-specific concerns, such as consent to participate in dementia-related drug trials, and how potentially aggressive outbursts should be handled.

However, if you’re not sure if your loved one is able to make these decisions, they made need to be assessed for capacity before the process can move forward. Which brings us to our next question:

What if my loved one doesn’t have the capacity to make advance directives?

If your loved one is not mentally capable of establishing advance directives, decision-making authority would then pass to the closest next-of-kin, such as a spouse or adult child. In some situations, particularly if a person has no next-of kin or family members choose not to take this authority, a legal guardian might be appointed in an official capacity to make these decisions. Physicians or hospital ethics committees might also make decisions if an older adult is unrepresented, but this typically does not happen when there is a caregiver in place willing to make these decisions.

Even if your loved one does not have mental capacity, it is still important to take their wishes into account when possible, even if these wishes were never legally documented. When making important decisions, keep in mind what your loved one has expressed in the past about where and how they want to live as they age, who they do and don’t want to be involved in their finances, and whether or not they want to be resuscitated if their heart has stopped.

If your loved one does not have the appropriate mental capacity to make advanced directives, this should also serve as a barrier to prevent bad actors from manipulating them into making questionable legal decisions. However, you should still be careful in monitoring your loved one’s finances, and clearly communicate your loved one’s diagnosis and capacity to any legal firm they interact with.

What if something in the advance directive needs to change?

Changes to advance directives also require mental capacity. If your loved one can still express their wishes, they should update their directives while they are able to. A lawyer can help walk them through special considerations and guide them in putting measures in place should changes happen—such as a divorce, or the death of a child or spouse—after they lose capacity.

After capacity is lost, the wishes will need to be honored as written. However, if a legally appointed Power of Attorney or guardian is abusing their responsibilities and your loved one is not capable of removing their authority, you can still make a police or Adult Protective Services report to open an investigation. If wrongdoing is confirmed, the court can potentially have the person removed from authority, or else have their actions under stricter oversight in the future.

This article was written as a part of the Expansion of Dementia-Capable Communities within Urban and Rural Settings in Ohio using Evidence-Based and Informed Programming project, funded by the Administration for Community Living, Alzheimer’s Disease Program’s Initiative (#90ADPI0052-01-00). Learn more here.