As a board member of End of Life Options Colorado, I often respond to people seeking more information about planning for the future, especially when it comes to end-of-life decisions.
Recently, I received an inquiry from a 50-year-old woman, whom I’ll call Cindy. Cindy had watched her grandmother’s long battle with Alzheimer’s disease, which left a lasting impact on her. Her grandmother was hand-fed for an extended period, even after she could no longer recognize Cindy or other family members. Cindy was determined to avoid experiencing something similar and reached out to learn more about the advanced directives related to Alzheimer’s and dementia care.
During our conversation, we discussed Cindy’s personal wishes, focusing on her desire for clarity and control over her future care. I helped her understand that end-of-life situations, especially with dementia or Alzheimer’s, don’t always follow a predictable path. Cognitive decline can vary and fluctuate due to different factors.
One of the most important things I encouraged Cindy to do was to talk with her family, friends, and, most critically, her medical power of attorney. These conversations ensure that the people responsible for honoring her wishes fully understand her preferences in case she becomes unable to make decisions for herself.
We also explored various end-of-life options available on our website, including palliative care, hospice care, voluntarily stopping eating and drinking (VSED), palliative sedation, and the option to decline or stop life-sustaining treatments. Since individuals with advanced dementia typically don’t qualify for Medical Aid in Dying, we didn’t focus on that option.
However, I explained to Cindy that there are directives available that allow us to decide in advance when we would no longer want life-sustaining measures if we were to develop severe dementia. Organizations like Final Exit Network and Compassion & Choices offer dementia-specific advance directive forms that complement standard advance directives. These forms allow individuals to specify at what stage of dementia they would want to decline further medical interventions.
Here are links to these forms:
I appreciate the empowering language used in these forms, particularly the section titled “My Chosen End Point,” which allows each of us to define what we feel is best for ourselves. These directives can be adjusted over time, as long as we remain mentally capable, to reflect any changes in our wishes.
Cindy found these resources incredibly valuable, and our conversation inspired me and some of my family members to complete similar forms for ourselves.
If you haven’t already, it may be worth thinking about your own wishes in the event of significant cognitive decline. Consider discussing your preferences with those who may be involved in your care, and explore whether adding one of these dementia directives to your advance care planning is right for you.
Ellen Friedman, M.A.
Ellen Friedman, M.A. (she/her/hers) has been following an inner calling to educate, partner and companion people at end of life for a few decades. As a retired physical therapist who worked across the continuum of healthcare, she discovered a sacred space being with people as they approach the conclusion of their life’s journey. She is passionate about people learning end of life options so that friends and family can honor their personal wishes. Ellen serves people in person in Mesa and Gunnison counties and virtually throughout the world. She brings a peaceful loving presence to all conversations.
