If I Should Get Dementia: What Choices Do I Have?
An Educational & Reflective Guide for Individuals and Families Navigating Dementia and End‑of‑Life Planning
Dementia is a diagnosis that reshapes not only a person’s future, but often their sense of identity, autonomy, and agency. According to current estimates, more than seven million Americans live with Alzheimer’s disease, with an additional million experiencing other forms of dementia. That is roughly equivalent to the population of the state of Washington. For most, dementia is progressive and, at this time, incurable.
But early dementia is a unique moment—a window in which individuals still have decisional capacity, autonomy, and the ability to shape their future care. This period also raises profound questions: How do I want to live? How do I want to decline? How do I want to die?
As a Transitioning Doula, I hold space for these questions every day. This blog offers an educational and reflective exploration of the choices available, grounded in compassion and respect for personal values.
Living With Early Dementia: The Capacity to Choose
In the early stages, many people continue to function well, recognize their loved ones, participate in meaningful activities, and engage in decision‑making. Yet they also carry the knowledge that their personality, memory, and sense of self may eventually fade.
For some, the thought of living into deep dementia—unable to recognize family or engage in the world—is more frightening than the thought of death. This is where planning becomes essential.
Three Paths of Choice
When facing dementia, individuals often consider three broad pathways. Each reflects different values: preserving autonomy, avoiding prolonged decline, or allowing the natural progression of the disease without prolonging life.
1. Choosing to Die Before Losing Capacity
Some individuals decide not to live past the point where they can no longer make decisions. Two methods are commonly chosen:
Voluntarily Stopping Eating and Drinking (VSED)
VSED involves intentionally stopping all food and fluid intake. The process usually lasts from several days to two weeks. It is legal everywhere in the U.S. and requires no assistance from others—which is why it remains an option even in states where aid‑in‑dying is restricted.
Inhaling an Inert Gas
A faster method involving minutes rather than days. Final Exit Network (FEN) provides information on this, but because direct contact with FEN is sensitive, anyone wishing to explore this may reach out through www.transitioningdoula.com, and I will guide them appropriately without violating any laws or boundaries.
Reflection:
This first option can mean sacrificing years of meaningful life to avoid the loss of self that dementia brings—a deeply personal tradeoff.
This first option can mean sacrificing years of meaningful life to avoid the loss of self that dementia brings—a deeply personal tradeoff.
2. Choosing to Limit Medical Treatment After Capacity Is Lost
Many people choose to allow dementia to progress naturally while ensuring no medical intervention artificially prolongs life. This is commonly done through:
- A traditional advance directive
- A healthcare proxy or representative
- Clear instructions such as “If I suffer cardiac arrest, do not resuscitate.”
This approach is widely accepted legally. It allows individuals to live until their body naturally declines while avoiding burdensome interventions that may extend life but not quality.
3. Stopping Eating and Drinking by Advance Directive (SED by AD)
This is the most legally complex and emotionally charged path.
Here, a person states in advance that, once they reach deep dementia, their chosen representative should stop offering food and fluids—even by mouth—allowing death through dehydration.
The legality varies:
- Allowed: Nevada, Vermont, Arizona
- Not allowed: Iowa
- Unclear: 46 states fall into a gray zone where laws neither clearly permit nor prohibit it.
Questions hinge on whether food and fluids are considered “medical treatment.” Some legal scholars say yes; some physicians say no.
This pathway requires deep reflection, careful documentation, a prepared healthcare representative, and early action while decisional capacity remains.
Why Preparation Matters—And Why It Must Begin Early
People with early dementia still have the power to choose—but only for a limited time.
Once decisional capacity is lost:
- You can no longer sign an advance directive.
- You can no longer choose VSED yourself.
- You may no longer qualify for programs such as Final Exit Network’s Exit Guide services.
Preparation is not a commitment to any specific path. It is simply preserving options for your future self—options you may or may not ever choose to use.
Advance Directives for Dementia
A dementia‑specific directive can:
- State how you want to be cared for at each stage of decline
- Protect your future self from prolonged suffering
- Clarify your wishes around VSED
- Support your healthcare representative in making difficult decisions
Organizations like FEN have created several dementia directives. If you or someone you care about wants support choosing or completing one, I invite you to reach out through www.transitioningdoula.com, and I will personally help guide the process.
Options for Hastening Death When Facing Dementia or Decline
While still competent, several options exist. After losing decisional capacity, only a few remain. Here is a simplified educational overview:
1. Stop Therapeutic Medical Treatment
Refuse any treatment aimed at extending life while continuing to receive comfort‑focused care.
2. Voluntarily Stop Eating and Drinking (VSED)
Can be done personally while competent, or instructed through a dementia directive for later.
3. Medical Aid in Dying (MAID) – U.S.
Available only in certain states and only for those expected to live less than six months. Each state's requirements differ.
4. Medical Aid in Dying – Switzerland
More accessible but costly and requires travel and planning.
5. Books on End‑of‑Life Self‑Deliverance
Educational resources exist, such as Final Exit 2020 and The Peaceful Pill Handbook—but these are tools of information, not instruction.
6. Final Exit Network’s Exit Guide Program
For those who qualify, FEN provides education, not physical assistance.
Anyone interested can begin the conversation confidentially through www.transitioningdoula.com, and I will assist in navigating next steps.
Anyone interested can begin the conversation confidentially through www.transitioningdoula.com, and I will assist in navigating next steps.
A Doula’s Reflection: Honoring Autonomy, Preserving Dignity
As an end‑of‑life doula, I often meet people who fear dementia more than death. They fear losing their story, their relationships, their very sense of “I.”
The options outlined here are not about choosing death—they are about choosing how to live through decline, how to honor what matters most, and how to allow the final chapter of life to reflect one’s values.
If you or someone you care about has early dementia, please know:
- You do have choices
- You are not alone
- And planning now can be one of the most compassionate gifts you give to your future self and your loved ones
I am here to support, educate, and walk with you through these conversations. Visit www.transitioningdoula.com to take the next step with someone who understands.
Marc D Malamud
Transitioning Doula
