What about Dementia?

Photo by The Digital Story on Foter.com
Photo by The Digital Story on Foter.com

The most frequently asked question regarding aid-in-dying laws in the United States after “Where is it legal?” and “How do I access it?” is “What happens if I get dementia?”

It’s a valid question.

Active euthanasia is not legal anywhere in the United States for humans. A person with dementia (Alzheimers or other dementia-related diseases that diminish mental capacity or impair decision-making ability) cannot access medical aid in dying in the United States under any circumstances. This will not change until such time as our legal system agrees that our current selves should have complete agency over our future selves.

We currently have NO federal guarantees of sovereignty or agency over the self.

So, who qualifies for aid in dying?

To qualify for aid in dying, or the Maine Death with Dignity Act, a patient must be:

  • An adult residing in Maine.
  • Terminally ill with a six-month prognosis, confirmed by two physicians.
  • Mentally capable of making their own healthcare decisions.
  • Physically able to self-ingest (take into the digestive system) the medication.

There are no exceptions to these requirements. See state-provided FAQs for more information.

End-of-Life Planning for Dementia potential

The are things one can do to ensure complete end-of-life planning with regard to the potential for a dementia diagnosis later on.

  • Speak openly and honestly with family and others about your wishes should you end up with a dementia diagnosis.
  • Watch this video regarding advance directives to address dementia.
  • Complete an advance directive. Use specific, complete language regarding your thoughts, feelings, and wishes regarding dementia. Ensure your agent has a copy and is very clear about what you want and don’t want should you be diagnosed with dementia. Make a video of yourself reading it, and provide the directive and the video to your agent(s). Hold up a card with the date so it’s clear when you made the video.
  • Make financial plans for future care, if possible. Memory care is extremely expensive. Some would argue that access to memory care is really quite privileged.
  • Determine whether you have family support for in-home care if you get dementia. Providing care for a loved one with dementia is a 24/7 commitment as the disease progresses, and a person with dementia requires a lot of support.
  • Learn about available legal options for care and end-of-life planning to inform your decision-making, including exploring alternatives to medical aid in dying:

GeriPal Podcast, Timothy Quill, MD, on VSED

Timothy Quill, MD, University of Rochester Medical Center; VSED and other publications

Thaddeus Pope, JD, VSED resources

Dignitas, Switzerland

Pegasos, Switzerland

Unless and until the medical and legal systems of the United States reach a determination that our current rational, capable selves should have complete agency over our future capacity-compromised selves, it appears there will be little movement in the options available to people with dementia.

This is the sad legacy of our current society.