October 2025 Newsletter | Planning for Dementia and End of Life
My mission is to be the first woman in 4 generations to not develop Alzheimer’s Disease (AD). On my journey of discovering ways to mitigate my risk, I pass this information on to you in this Brain-Body-Health (BBH) Newsletter.
Hello Brain Body Health Citizen Scientists
Continuing Our Theme: Seasons
Last month we explored “Your Seasonal Brain.” This October, as autumn colors signal nature’s final transition, we turn to our own final season — the end of life. How do we prepare for this transition with clarity, dignity, and compassion — especially if dementia may play a role?
As we enter this reflective time, we’re also reminded of Día De Los Muertos (Day of the Dead) — a vibrant Mexican tradition that honors loved ones who have passed. For many years, I’ve celebrated Día De Los Muertos by creating an altar (ofrenda) filled with photos, candles, and mementos that bring the memories of my parents, friends, and ancestors to life. It’s a time for storytelling — often funny, always heartfelt — and a reminder that our relationship with death can be loving, lighthearted, and even joyful. Rather than something to fear, death can be seen as a natural part of life’s cycle, inviting us to live fully and plan wisely.
Why These Conversations Matter
End-of-life (EOL) planning isn’t about giving up. It’s about ensuring your care reflects who you are and what matters most. Honest, early conversations bring peace of mind — sparing loved ones from guesswork, preventing unwanted medical interventions, and helping clinicians honor your values.
Medical Aid in Dying (MAID) and Dementia
Many are surprised to learn that Medical Aid in Dying (MAID) is not legally available to people with dementia in the U.S.
As of 2025, 12 states and the District of Columbia allow MAID — but only for those with a terminal illness expected to cause death within six months. Dementia doesn’t meet that definition because most deaths occur from complications, not the disease itself.
In contrast, countries such as Switzerland, Belgium, Sweden, and the Netherlands have established centers for end-of-life choice. Switzerland’s Dignitas is among the best known, though even their applicants must be of sound mind and able to take medication voluntarily.
Start Early — It’s an Act of Love
I completed my first will in my 40s and have updated it regularly. Over time, I’ve shared my wishes with family and friends.
Whether you’re healthy, caring for someone with cognitive decline, or facing your own diagnosis, starting early is an act of courage and kindness.
One of my goals in creating Brain-Body-Health was to make these conversations part of wellness — because my own family couldn’t have them before my parents’ dementia advanced. I want something better for others.
Your Rights
Every competent adult has the right to refuse or stop unwanted medical treatment, even if that choice leads to death.
This includes refusing surgeries, medications, dialysis, transfusions, or chemotherapy.
If a person can no longer decide for themselves, their Durable Power of Attorney (DPA) for Health Care can make these decisions on their behalf.
As Barbara Coombs Lee, author of Finish Strong, reminds us:
“It’s not easy to die in America. But we can do much to finish on our own terms.”
How to Start the Conversation
Lee recommends beginning with what matters most:
Lead with values, not treatments.
What makes life worth living? What would make it unbearable? Your answers define your care priorities.Name your healthcare agent.
Appoint a Durable Power of Attorney for Health Care (DPA) and a backup. Make sure they understand your wishes and are willing to advocate for you.Talk early — especially about dementia.
Don’t wait for a crisis. As decision-making changes, revisit and simplify your care goals toward comfort and dignity.
If you’re not sure how to begin, try The Death Deck — a card game designed to spark meaningful, even playful, conversations about dying.
Planning for Dementia
Half of older adults die with Alzheimer’s or another form of dementia.
Most people say, “If I ever get like that, don’t let me live that way — or shoot me.” I’ve even said these words myself.
But a wish is not a plan.
A Dementia Directive — an addendum to your Advance Directive — lets you specify care preferences as cognition declines.
Explore the Dementia Values Tool by Compassion & Choices to help define your wishes clearly.
Realistic End-of-Life Options
Accept natural decline.
When illness or infection occurs, choose comfort care over aggressive treatment. Hospice and palliative care can manage symptoms and ensure peace.
Example: My mother’s recurring infections were treated with comfort measures, not antibiotics. My friend Cristino chose to stop dialysis and died peacefully at home, surrounded by family, singing, and stories.VSED — Voluntarily Stopping Eating and Drinking.
A legal, personal choice that allows a natural death. It requires family, DPA, and medical support, with hospice managing comfort and sedation. The process typically lasts 5–10 days.Medication Accumulation.
Taking medication to bring about one’s death is not a crime. However, obtaining life-ending medication independently is complex and requires careful planning. Some, like scholar Sandy Bem, pursued this option at home, described in a number of publications (see under Resources).Foreign End-of-Life Organizations.
Groups like Dignitas (Switzerland) assist eligible members who are in the early stages of dementia, are terminally ill, or are experiencing severe physical or mental suffering, provided they can act voluntarily and are mentally competent. Dignitas works closely with independent Swiss physicians to review medical documentation, confirm sound decision-making capacity, and ensure all legal and ethical safeguards are met.
Timing Is Everything
No one wants to die too soon — but waiting too long can remove choices. Those wishing to avoid late-stage dementia must act while still capable of understanding and making voluntary decisions.
Your Dementia & End-of-Life Planning Checklist
Before cognitive changes, or shortly after diagnosis:
Clarify what medical treatments and long-term care you do not want.
Complete your Advance Health Care Directive, explicitly covering dementia (loss of recognition, dependence, inability to decide).
Add a Dementia Directive, a Video Supplement, and Personal Notes.
Appoint and brief your DPA for Health Care (and backup).
Share your wishes with family and doctors — clarity prevents conflict.
Consider a POLST form if you are seriously ill.
Review documents regularly and update as your wishes evolve.
Consult an elder law or estate-planning attorney to ensure validity.
Keep both digital and paper copies accessible.
Explore palliative and hospice options early.
Creating a Video Directive
A short video can reinforce your written wishes.
Tips:
Record on your phone (about 5 minutes).
Begin with your name and date.
Speak from the heart about:
What gives your life meaning
What “quality of life” means to you
What treatments you do not want
The kind of care you do want
Who your healthcare DPA is
Share it with your DPA, family, and medical team.
Legacy and Meaning
Consider recording an ethical will — a personal message about your hopes, values, and life lessons.
Jane Goodall’s video is a beautiful example:
In the same spirit, I often think of Día De Los Muertos and the altars I’ve built over the years — colorful spaces filled with marigolds, candles, favorite foods, and photographs of loved ones. During this time, families gather to share stories, many of them funny, about those who have gone before us. These traditions remind us that memory is a living bridge — that the people we’ve loved continue to shape our lives through the stories we tell and the care we give.
Storytelling, laughter, and remembrance are essential forms of end-of-life connection. They help transform loss into gratitude and allow us to approach both death and dementia not with fear, but with tenderness and meaning.
Final Reflection
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has.” — Margaret Mead
Let’s bring end-of-life and dementia planning into everyday conversation — with honesty, tenderness, and courage.
Doing so ensures that our final season is lived — and ended — on our own terms.
Resources:
Compassion & Choices are working to normalize advance care planning for people with dementia so they can have their wishes known and respected.
Finish Strong, Putting Your Priorities First At Life’s End by Barbara Coombs Lee
Chasing Daylight: How My Forthcoming Death Transformed My Life
Briefly Perfectly Human, Making an Authentic Life While Getting Real About The End
Sandy Bem's story: Dying in her own time
Choosing To Die: A Personal Story: Elective Death By VSED by Phyllis Shacter, 2017
The VSED Handbook; by Katie Christie, 2022
A Better Way of Dying, How to Make the Best Choices at the End of Life, by Jeanne Fitzpatrick, MD & Eileen Fitzpatrick, JD
Our Dia De Los Muertos Ofrenda:
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