According to a 2026 Alzheimer’s Association report, about one in nine people aged 65 and older has Alzheimer’s disease. My mother was one of the nine. She was diagnosed at age 73, and for the next seven years until she died my family witnessed her deterioration and tried to give her as good of a life as possible.
September is World Alzheimer’s Month, and has the mission to raise awareness, reduce stigma, promote early detection and diagnosis, and honor caregivers of those with this incurable disease. As more people are being diagnosed with Alzheimer’s as the older population grows, informing people about all aspects of this disease becomes even more important.
One piece of education that’s not talked about nearly enough relates to the fear of being diagnosed with it. Surveys show that more people fear getting Alzheimer’s than cancer.
Many who have it feel clearly they do not want to live with it in its late stage when they have total dependence on others and significant cognitive loss. They want to end their lives before they reach the late stage, and don’t know the options they have to control the time and manner before this stage is reached.
Many people don’t know about the Medical Aid in Dying (MAID) law in California, and its requirements: be age 18 or older and a California resident, have a terminal illness with six months or less to live confirmed by two doctors, have cognitive capacity, and be able to self-ingest the medication. Twelve other states and Washington, D.C., have MAID laws as well.
Too many people aren’t aware that no state with MAID allows it for those with Alzheimer’s or any type of dementia. With Alzheimer’s, by the time people reach the six-month rule, they are in the late stage of the disease and no longer have cognitive capacity.
Other end-of-life options exist. Voluntary assisted dying organizations are available to non-residents from Switzerland, where U.S. laws don’t apply. The Final Exit Network can also provide information.
These options can be used to avoid late stage Alzheimer’s, but one must have cognitive capacity to do it, so the choice must be made before the onset of the late stage. More public education about these options will help people faced with Alzheimer’s make the best late stage decisions for themselves. This of course can mean taking none of these options, but having the knowledge allows people to choose.
A traditional Advance Healthcare Directive stipulates medical treatments people want, which ones they would want to avoid, and under which conditions each of their choices applies when they can’t speak for themselves. However, standard directives are written more for catastrophic illness, rather than progressive cognitive decline. They do not include one’s wishes when it comes to avoiding late stage dementia or Alzheimer’s.
This is changing. Alzheimer’s and dementia directives and Advance Healthcare Directive addendums are evolving and available now to allow people to document their wishes at the late stage of the disease. They can include behavioral and clinical triggers, that when witnessed, the person wants specific medical treatments, feeding and other life sustaining things to stop.
However, they don’t include being able to end the life of the patient. Final Exit Network and the Northwest Justice Project offer sample forms. But they are not legally binding under California law.
While organizations like the Hemlock Society of San Diego and Final Exit Network offer end-of-life option education, much more is needed, including revising the MAID law to cover people with progressive neurological conditions like Alzheimer’s who are in the early stages of the disease and have cognitive capacity. The organization A Better Exit has this mission.
Along with knowing more about Alzheimer’s disease itself, public education needs to openly address the fears of having this disease and not having to live with it in its late stages. It should be easier for the public to learn about legal and viable end-of-life options, now and looking to the future, that can allow people to end their lives on their own terms.
Laura Carroll is a nonfiction author, former trial consultant and business psychology professional. She lives in San Diego and currently volunteers for A Better Exit and The Switzerland Alternative.
