Endpaper: Advance Directive for People with Dementia

In 2018 a new Advance Directive document was developed specifically for individuals diagnosed with dementia and those who, because of family history, are at high risk for dementia. It was developed by the non-profit organization, End of Life Choices New York. This document, called ADVANCE DIRECTIVE FOR RECEIVING ORAL FOOD AND FLUIDS IN DEMENTIA, was developed with the help of lawyers, physicians, hospice, and palliative care experts. 

Individuals with dementia are the fastest-growing clinical population in the United States. Dementia is a progressive condition most often associated with Alzheimer’s disease. However, irreversible, chronic cognitive, and physical decline characteristics of dementia are seen in a number of other diseases. People with vascular dementia, Lewy body dementia, Parkinson’s dementia, Huntington’s dementia, and frontotemporal dementia also suffer from damaged brain cells that produce similar symptoms.

Until the availability of the ADVANCE DIRECTIVE FOR RECEIVING ORAL FOOD AND FLUIDS IN DEMENTIA, people who had reached a stage of terminal dementia often lived in a totally incapacitated state, kept alive only because they were given fluids and nutrition. However, End of Life Choices New York shed light on the issue of assisted food and fluid intake in late stage dementia.

Dementia progresses in stages. In the early stages people often live on their own with only mild cognitive impairment. In middle stage dementia, memory and a person’s ability to recognize familiar faces declines more and more, and they may require assistance with bathing, dressing, eating, and ambulating. Finally, in advanced late-stage dementia, diagnosed as stage 6 or 7, people become totally incapacitated. But, although someone is bed-ridden, unable to toilet, communicate, or make decisions, it is possible that they may continue to accept food and fluids if feeding is coaxed or coerced. 

The ADVANCE DIRECTIVE FOR RECEIVING ORAL FOOD AND FLUIDS IN DEMENTIA was written in order that a dementia patient might avoid having their life prolonged in a state they would not have wanted or consented to if they were mentally capable. Until now there was no recourse for someone in the terminal stages of dementia other than accepting the standard treatment norm of assisted spoon feeding. The dementia Advance Directive outlines a choice of two options. Option A states that in a particular late stage clinical situation, as explained in detail in the document, all assisted food and fluids be stopped. Option B states that in the same clearly explained clinical situation, comfort-focused feeding would be permitted based on the individual’s cooperation and receptivity, demonstrated by showing signs of enjoyment or anticipation of eating or drinking.

There are several notable reasons why the ADVANCE DIRECTIVE FOR RECEIVING ORAL FOOD AND FLUIDS IN DEMENTIA is an important decision-making document. First, in the traditional New York State Advance Directive, which includes a Living Will and Health Care Proxy, the issue of assisted oral food and fluid intake is not addressed. The treatment choices focus only on accepting or refusing any artificial nutrition or hydration, such as might be provided by intravenous or intragastric means. Second, a person with a new dementia diagnosis, who still has cognitive ability to make decisions, can now make decisions about their own care if their dementia progresses to a late stage. This dementia document, with its clearly stated directions, also reduces unnecessary suffering for loved ones who would witness terminal dementia changes occurring.

THE ADVANCE DIRECTIVE FOR RECEIVING FOOD AND FLUIDS IN DEMENTIA is offered free and downloadable at the online site: https://endoflifechoiceny.org/. As with all types of end-of-life directives, it is important to make sure concerned parties are aware of and will honor your wishes. This is especially important when an individual may at some point enter a nursing home or memory care facility. A dementia diagnosis is life changing. But there are advocates working to ease the burden and allow individuals and their loved ones options and choices to foster a life of dignity for as long as possible.      

Written by Carolyn Van Ness, a retired Women’s Health Nurse Practitioner with experience as a medical journalist and author. Currently her priority is end-of-life education through her efforts as a Death Doula, Death Cafe member, and Hospice volunteer.