Dementia and End-of-Life Choices

“What about a person with dementia?”

At the dozens of presentations we conduct across the state, no matter where, no matter who the audience is, inevitably, this is nearly always the first (or second) question we are asked. And of the hundreds of phone calls and email inquiries we receive each year, approximately 15% of these regard helping a family member or loved one with dementia.

What is dementia and how does it affect end-of-life options?

Dementia is often used interchangeably with Alzheimer’s, but it is actually a general term for loss of memory, language, problem-solving, and other thinking abilities that become severe enough to interfere with daily life.

Alzheimer’s constitutes 60-80% of dementia cases, but many other conditions can cause dementia, such as Huntington’s or Parkinson’s diseases (neurodegenerative diseases), AIDS, Lyme disease, and/or stroke.

Often, says Founding Director and Client Volunteer Lynne Calkins, we will be talking with someone who is searching for a physician who prescribes Medical Aid in Dying (MAiD) to eligible patients, and then, as the conversation proceeds, “We learn there’s dementia involved and have to tell the person, ‘I’m sorry, but I don’t think your mother’s going to be eligible under the guidelines of the California End of Life Option Act.’”

To qualify for MAiD in California, a person must have a terminal illness that is expected to result in death within six months and have the capacity to make medical decisions. The challenge, says Calkins, is “by the time you have six months left with dementia, you’re not of sound mind.”

What, then, are your options?

I. Dementia Directive
First, she suggests completing a Dementia Directive. This form lets you communicate what you would want at each stage of advancing cognitive decline. It is not legally binding at this time, but can be attached to your Advance Directive.

II. Physician Orders for Life-Sustaining Treatment (POLST)
Those who are clear they don’t want to go all the way to the end with dementia often have a strong family history of dementia, in Calkins’ experience, and/or have had the experience of taking care of somebody for 10, 15 years through dementia. “They know where this is going” and that they don’t want that ending for themselves.

Completing a POLST with your physician can help in this regard. You can add, “‘If I get an infection, I don’t want it treated. I want to be in hospice and receive comfort care only.’ You can then be kept comfortable and die of pneumonia or some other infection.”

III. Voluntarily Stopping Eating and Drinking (VSED)
VSED is the conscious act of a person to intentionally stop eating and drinking with the goal of ending his or her life. The decision to use VSED relies on a competent person’s preference and determination to control his or her own dying and is a way people have historically chosen to die in many cultures.

The VSED Handbook, by Kate Christie, details the steps Christie’s family took when her late mother, Jane, chose a peaceful death via VSED to escape the final brutal stages of Alzheimer’s disease. She covers actionable steps, what to expect from each stage of the VSED process, and challenges and unexpected gifts she experienced accompanying her dying mother on her final journey.

VSEDresources.com contains a wealth of information, including a downloadable PDF of equipment and supplies to pick up ahead of time; links to videos such as Rosemary Bowen’s fast (filmed by her daughter); and an interesting, recent blog about the current discussions around using VSED as a bridge to MAiD for people with dementia. (Note: The Bowen video is also available on the EOLCCA site.)

Calkins suggests clients with dementia create two videos prior to VSED, one of the person saying that he or she wants VSED and why, and another of the person reminding him/ herself they want this, which can be used as a gentle reminder if the person forgets.

EOLCCA has volunteers with personal experience with VSED and are available to talk and answer any questions you may have.

IV. Voluntary Aid in Dying clinics in Switzerland
Finally, you can go to Switzerland, where you do not have to have a six-month terminal diagnosis. “That’s the only country where you can come from a foreign country and get help with MAiD,” Calkins explains.

Three popular clinics include Dignitas, Pegasos Swiss Association, and Association lifecircle. Each clinic does things a bit differently, but there is still a process: you have to apply, and the total cost all in (including travel) is around $10,000.

Amy Bloom’s 2022 book In Love: A Memoir of Love and Loss, offers an intimate account of her experience supporting her husband, who had dementia, to use Dignitas.

Options may be more limited in the case of dementia, but options there are.
If you have any questions, please call us.

Antonia Kao is an interdisciplinary artist, stay at home parent who unschooled her now-15-year-old daughter through age 13, and current End of Life Choices (EOLCCA) Client Volunteer. She’s grateful for a conversation with her younger sister, geriatrician Dr. Helen Kao, that helped her find EOLCCA (with which she began volunteering in September 2022) and the University of Vermont Medical School Death Doula training (which she completed that same winter).