Advance Wishes for Medical Aid in Dying With Dementia: Why I’m Sharing Mine

Written By Kathleen Hasay

This is a post I’ve been sitting with for a long time.

As a death doula and end of life planner, I spend my days helping people think through illness, aging, loss, and what matters most at the end of life. But this topic is not only professional for me. It’s deeply personal.

My uncle Randy lives in Canada and was diagnosed with Alzheimer’s disease in 2015, when he was just 54 years old. He is now 64 and in the late stages of dementia.

At this point, he cannot safely be left alone and requires 24/7 care. He is no longer able to manage activities of daily living such as dressing, feeding himself, or using the bathroom without assistance. He struggles to communicate. Watching this progression has been heartbreaking, not only because of the loss of memory, but because of the gradual loss of independence, privacy, and self-determination.

In the earlier years of his illness, my uncle remained deeply aware of what lay ahead. He was often drawn to films and documentaries about dementia, like Still Alice, the Glen Campbell documentary, and the film Here Today starring Billy Crystal. While watching Here Today, he became inconsolably upset. It was clear that he recognized his own future in what he was seeing. Even while much of his life remained rich and meaningful, he understood where the disease would ultimately lead.

When Randy was first diagnosed, medical aid in dying was not yet legal in Canada. Over the years that followed, he expressed, both directly and indirectly, that he did not want to continue living once his illness progressed to the point where he would lose autonomy and dignity. As his condition worsened, those expressions became more urgent, particularly when he realized that certain chapters of his life were closing for good.

However, by the time his suffering became profound and unmistakable, the law no longer recognized his voice. He could no longer clearly articulate his wishes, and there was no legal mechanism for earlier, well-understood expressions of those wishes to guide decisions once capacity was lost. His experience reflects a painful gap in the current system, where individuals can foresee their suffering, speak about it honestly, and still have no way for those wishes to be honored when it matters most.

That lived experience is one of the central reasons I care so deeply about advance wishes for medical aid in dying in the context of dementia.

Dementia, Aging, and Why This Conversation Matters Now

Dementia is not a rare or fringe issue. In the United States, more than 7.2 million adults age 65 and older are currently living with Alzheimer’s dementia, and that number is projected to grow significantly in the coming decades as the population ages. By 2050, the number is expected to nearly double if there are no major medical breakthroughs.

To put that risk into clearer perspective, dementia prevalence rises sharply with age:

  • About 1 in 10 adults age 65 and older is living with Alzheimer’s disease or another form of dementia.

  • About 1 in 5 adults ages 85 to 89 is living with dementia.

  • About 1 in 3 adults age 90 and older is living with dementia.

At the same time, the U.S. population aged 65 and older continues to grow. In the United States, approximately 10,000 people turn 65 every single day, a demographic shift that will continue for years as the baby boomer generation ages. Adults over 65 now make up roughly 18 percent of the population, a figure that will continue to rise in the coming years.

This means more families will face long periods of cognitive decline, often paired with physical frailty, total dependence, and prolonged suffering. Yet our laws around end of life choice have not kept pace with this reality.

Why Dementia Is One of the Greatest Fears About Aging

Dementia is not only common. It is also one of the conditions people fear most when they think about getting older.

Multiple large surveys and peer reviewed studies show that dementia consistently ranks at or near the top of health related fears associated with aging, often surpassing fears of cancer, heart disease, or physical disability.

Research has found that approximately one third of adults over age 60 in the United States identify Alzheimer’s disease or dementia as the health condition they fear most. Other studies show that more than 80 percent of middle aged and older adults report at least some fear or worry about developing dementia, with a significant portion describing that fear as severe.

Notably, this fear is not only about death. Studies suggest that what people fear most about dementia is the progressive loss of identity, independence, autonomy, and the ability to recognize or be recognized by loved ones. The concern is less about dying and more about living for years in a state that feels fundamentally disconnected from the self.

When dementia is both widely feared and increasingly likely with age, the absence of meaningful tools to plan for its later stages becomes even more striking.

Medical Aid in Dying in the U.S. Today

Medical aid in dying is legal in a number of U.S. states under very specific conditions. In all current U.S. laws, a person must be terminally ill, generally with a prognosis of six months or less, and must have full decision making capacity at the time of the request and administration of the medication.

In California, the End of Life Option Act allows eligible adults to access medical aid in dying, and recent legislation has made the law permanent. This is meaningful progress.

However, there is a critical gap. All current U.S. laws require capacity at the time of request. For people with dementia, this creates an impossible situation. When someone is first diagnosed, they are not terminal. When the disease has advanced to a terminal stage, they no longer have legal capacity.

The result is that many people who would have wanted this option are categorically excluded from it.

Why I Created a Supplemental Advance Wishes Document

Because of this gap, I created a supplemental document to sit alongside my advance directive.

This document outlines my advance wishes regarding medical aid in dying should a legal pathway ever open in the United States for people with dementia who have lost capacity.

It is very important to be clear about what this document is and what it is not.

This document is not legally binding. It does not authorize medical aid in dying. It does not override existing law.

What it does do is provide a clear roadmap of my values, boundaries, fears, and wishes. It gives my loved ones and any future medical decision maker insight into how I define dignity, suffering, and quality of life. It explains the circumstances under which I would or would not want life prolonged.

In other words, it is an act of communication.

I believe that even when something is not legally enforceable, it still matters deeply to be explicit. Silence leaves others guessing. Clarity is a gift.

You can download the template I created here and adapt it for your own records:

If you’re someone who wants to clearly document your values around dignity, suffering, and quality of life in the context of dementia, I’ve created a free template you can use as a supplement to your advance directive.

Download: Advance Wishes for Medical Aid in Dying With Dementia (Word Doc)

This document is offered as an educational and reflective resource. It is not legal advice and it is not a substitute for personalized guidance.

Want support using this document or talking it through?
If you would like help clarifying your values, translating this into meaningful conversations with loved ones, or integrating this document into a broader end of life plan, I offer one on one planning sessions through The Everafter Collective. This can be especially helpful if dementia, serious illness, or caregiving is already part of your life.

Schedule a planning session

Looking Beyond the U.S.: Quebec’s Advance Request Model

Other places are beginning to grapple with this issue more directly. Quebec has introduced legislation that allows people with serious and incurable illnesses, including those that lead to incapacity such as dementia, to make an advance request for medical aid in dying while they still have capacity.

While the legal framework in Canada is very different from that of the United States, some of the language and structure in the document I created was informed by the publicly available Quebec forms. They offered a useful example of how someone might clearly describe clinical conditions, loss of function, and personal thresholds in a way that others can later observe.

Advocacy at Home

I am also actively in contact with my state senator, Catherine Blakespear, regarding this issue. Senator Blakespear has played an important role in preserving and strengthening California’s End of Life Option Act, including the recent effort to make the law permanent.

While current law does not allow for advance requests in cases of dementia, I believe ongoing dialogue with legislators is essential. Laws change because people speak up, share their stories, and articulate what is not working.

This is not about telling anyone else what choice they should make. It is about ensuring that people who want to plan ahead are not excluded from the conversation.

A Stronger Way Forward

If dementia or cognitive decline is something you think about, for yourself or for someone you love, here is what I encourage you to do:

  • Document your values, not just your treatments. Advance directives are most powerful when they explain why, not only what.

  • Talk early and revisit often. Conversations before crisis are radically different from conversations during crisis.

  • Use non binding documents as tools for clarity. Even when the law is limited, your voice still matters.

  • Speak up. Share your perspective with healthcare providers, community leaders, and elected officials.

Planning ahead is not about giving up hope. It is about honoring the person you are now and protecting the person you may become.

My hope in sharing this is not to persuade everyone to agree with me, but to make space for honesty, nuance, and courage. The more we talk about dementia, autonomy, and end of life choice, the less alone people feel navigating them.

If this resonates with you, I invite you to download the template, sit with it slowly, and start the conversation.

And if you find yourself thinking, I don’t want to do this alone, you don’t have to.

I work with individuals and families who want thoughtful, compassionate guidance as they navigate advance planning, dementia concerns, and end of life decisions. Often, the hardest part is not the paperwork, but knowing where to begin and how to talk about what matters most.

You can start by downloading the document.
You can go deeper by working with me.

Both are valid. Both are acts of care.

Frequently Asked Questions About Advance Wishes and Dementia

Can you make advance wishes for medical aid in dying if you have dementia?

In the United States, current laws do not allow legally binding advance requests for medical aid in dying once someone has lost decision making capacity. However, many people choose to document their values and wishes in advance as a way to guide loved ones and inform future conversations if laws change.

Is an advance wishes document legally binding?

No. An advance wishes document for medical aid in dying is not legally binding in the U.S. It does not authorize MAID or override existing law. Its purpose is to clearly communicate values, boundaries, and preferences so others are not left guessing.

What is the difference between an advance directive and advance wishes for MAID?

An advance directive focuses on medical treatments you would or would not want if you cannot speak for yourself. Advance wishes for MAID go deeper into personal thresholds around dignity, suffering, and quality of life, particularly in the context of dementia, even though they are not legally enforceable.

Why would someone write advance wishes for MAID if it is not legal?

People write advance wishes documents not because the law currently allows MAID in dementia, but because they want their values to be clearly understood. These documents can guide loved ones, medical proxies, and care teams, reduce uncertainty, and ensure that decisions align as closely as possible with the person’s deeply held beliefs.

Does documenting advance wishes mean I am giving up on treatment or hope?

No. Documenting advance wishes is not about giving up. It is about planning thoughtfully for a range of possible futures. Many people continue to pursue treatment, meaningful experiences, and connection while also being honest about what quality of life means to them.

Should I talk to my family about this document?

Yes. These documents are most powerful when they are paired with conversation. Talking through your wishes while you have capacity helps loved ones feel more confident and less burdened if they are ever asked to make decisions on your behalf.

Who is this kind of document most helpful for?

Advance wishes documents are especially helpful for people who have seen dementia up close, who fear prolonged cognitive decline, or who want their end of life decisions to reflect personal values rather than default medical pathways. They can also be valuable for caregivers and adult children trying to understand what their loved one would have wanted.

Sources and Further Reading

The statistics, legal descriptions, and research referenced in this post are drawn from the following reputable organizations and publications:

Kathleen Hasay
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