Why did End of Life Choices New York create the EOLCNY Dementia Directive?

Unfortunately, dementia is common and increasingly becoming more prevalent. Right now, about 10% of people 65 and older have Alzheimer’s disease, or another form of dementia, and that percentage is expected to increase. According to the Alzheimer’s Association, more than 14 million Americans are expected to develop dementia by 2050, and it has been the 6^th leading cause of death for many years (dropping to 7^th in 2020 only because COVID was added as the 3^rd leading cause of death).

Dementia is generally only diagnosed in those 65 or older, though there are some rare cases where it can be diagnosed earlier. Dementia is not one specific disease, but rather a group of conditions that lead to impairment of brain functions, such as memory and decision-making. Dementia is progressive, which means it gets worse over time, but how quickly it progresses can vary from person to person. Thankfully, there are some medications and therapies that can slow down progression, but right now there is no cure. At a certain stage of dementia, individuals lose the ability to make their own medical decisions, so advance directives are incredibly important.

End of Life Choices New York created its Dementia Directive in response to multiple individuals and families reaching out, because they were worried about what would happen if they developed dementia. In particular, they were concerned about documenting their wishes regarding handfeeding. At later stages of dementia progression, when the person is no longer able to communicate their wishes, there is a primitive reflex that remains. When the side of the mouth is touched, it opens and a caregiver can place food on a spoon and put it into the mouth. This is called “handfeeding.” A person in the most advanced stage of dementia can live years if carefully handfed. Some people would want to limit or stop handfeeding at an advanced stage of dementia because they would not want their life prolonged at that stage. Existing advance directives did not offer a consistent and structured way to document such wishes.