As a member of the board of directors for End of Life Options Colorado, I often have the opportunity to assist individuals seeking information about end-of-life care. Recently, I received an inquiry from a 50-year-old woman named Cindy (name changed), who shared her personal experience with dementia in her family. Cindy witnessed her grandmother’s decline due to Alzheimer’s Disease, where she was hand-fed for a long time, even after losing the recognition of family members.
This difficult experience left a lasting impression on Cindy, and she expressed a strong desire to avoid a similar situation for herself. During our conversation, we discussed the concept of advanced directives specifically tailored for individuals with Alzheimer’s and other dementias. Cindy reached out to our organization to learn more about these options.
It was essential for her to clarify her personal wishes, as the progression of dementia or Alzheimer’s can be unpredictable and varies from person to person. A crucial part of our discussion involved encouraging Cindy to communicate her wishes with her family and medical power of attorney. These conversations are vital in ensuring that her loved ones can honor her decisions if she becomes unable to advocate for herself.
We explored various end-of-life options available through our resources, including:
- Palliative care
- Hospice care
- Voluntarily stopping eating and drinking (VSED)
- Palliative sedation
- Declining or stopping life-sustaining treatments
Given that individuals with advanced dementia may not qualify for Medical Aid in Dying, we did not delve deeply into that topic. I also shared with Cindy the importance of preemptively determining the conditions under which she would want to forgo life-sustaining measures if her dementia progressed significantly.
Organizations like Final Exit Network and Compassion & Choices provide specific advance directive forms for dementia, which are meant to supplement standard advance directives. I particularly appreciate the terminology “My Chosen End Point,” as it empowers individuals to define their preferences clearly.
These forms can be modified over time if personal wishes change before a person becomes mentally incapacitated. Cindy found these resources extremely valuable, and the discussion prompted me to complete a form for myself as well. Several family members followed suit, recognizing the importance of planning for the unexpected.
If you find yourself considering your wishes regarding cognitive impairment, I encourage you to engage in conversations with those who may be involved in your care and explore including these directives in your overall advance planning.
