Dementia-Specific Advance Directives: A Budding Trend

Consider this: on average, about 1 in 3 of your clients who live to be 70 years old will develop dementia. (There’s a 31% chance for men and 37% for women.) Many of them will die from this debilitating disease. (Alzheimer’s Disease is the third leading cause of death for people over 85 and the fifth leading cause for those over 65.)

No wonder that a new advance care planning document is making its way into the medico-legal cannon: the dementia-specific advance directive. More precisely, it’s specifically designed for people with advanced dementia.

Why the push for a more targeted document?

Here’s the thinking: a typical, state-approved advance directive tends to cover a multitude of terminal conditions and serious illnesses: cancer, persistent vegetative state, and more. But in doing so, these documents do not sufficiently address the specifics of dementia that make this disease different from most others. Dementia presents obstacles resulting from the gradual degradation of mental capacity over time, the physical decline into incapacity that is part of the disease, the interplay between the two, and the difficulty in identifying when, during this slow decline, the person loses decision-making ability.

As a result, in addition to the emotional strain of this disease, people with advanced dementia and their family Members often face a series of challenges around how (or whether) to minimize suffering, to increase pleasure, and to make life most meaningful. These challenges often present as choices around:

• food and hydration, including whether one wants hand-feeding by another person when the individual can no longer feed him/herself;
• acceptable locations for living and settings of care;
• pain control;
• intimate relationship preferences
• addressing combative or assaultive behavior

Several advance directives have been developed to date to specifically address the decisions facing those with advanced dementia, including

Strategic Advance Care Planning (Stanley Terman MD, Caring Advocates)
Advance Directive for Dementia (Barak Gaster MD, Univ. of Washington)
Alzheimer’s Disease/Dementia Mental Health Advance Directive (End of Life Washington)
Advance Directive for Receiving Oral Food and Fluids in Dementia (End of Life Choices New York)

The last three of these have been developed in the last two years. Each address some but not all of the issues above. Dr. Terman’s approach includes advance directive forms and also cards, which are sorted to help clarify one’s wishes. They are available in hard copy, online and on a cellphone. While the cards and forms are general and appropriate for everyone, Terman, who has been involved in advance care planning for many years, has designed them to include medical situations encountered by people with severe dementia. His organization’s goal is to offer more specific options for people, including those who want to limit their suffering and not prolong their dying. Or, as he describes it, for people who want to know “what do to when there’s no plug to pull.”

Dr. Gaster’s directive frames dementia in three different stages– mild, moderate and severe – and has the individual consider and document their wishes at each stage. This is more specific than standard directives tend to be. This form then offers four options for care at each stage. These options are fairly typical of standard advance directives, though they do address going to the ER/hospital (or not). This document does not address feeding options.

The End of Life Washington directive is quite comprehensive and highly detailed in addressing non-medical choices that a person with dementia will face. It is designed to be used as a companion to a health care power of attorney, living will, and/or POLST form. These non-medical items include those listed above, along with the financing of care, how to handle pets, driving, and participation in experimental drug trials.

End of Life Choices New York’s directive focuses mainly on decisions about nutrition, specifically on assisted oral feeding (hand-feeding by another person). It includes options for hand-feeding as desired for comfort and pleasure, and for ceasing hand-feeding entirely.

These advance directives are not legally recognized by any state legislature, though the End of Life Washington form is based on Washington State law.

A dementia-specific advance directive is clearly relevant for someone with an actual diagnosis of early-stage dementia (and still capable of thinking clearly about their wishes) or with a family history of dementia. Could any of these documents be a useful additional tool for select clients of yours? Do you employ a dementia form not described here or have experience with any of these? Please let me know in the comments. I’m interested in your thoughts.

Randi J. Siegel, MBA, is the President of DocuBank® (docubank.com), which ensures that the emergency information and healthcare directives of its 250,000+ enrollees are available 24/7/365 through the largest advance directives registry in the U.S., as well as access to an online safe for storage of digital assets and other vital documents. Working with estate planning professionals since 1997, Randi frequently speaks at national estate planning conferences and has appeared on radio and television as an authority on registries. A member of the Philadelphia Estate Planning Council, the International Society of Advance Care Planning and the Coalition to Transform Advanced Care, Randi is active in health education and public engagement related to advance care planning/advance directives. She serves as Pennsylvania liaison to the National Healthcare Decisions Day initiative and as a board member of the Center for Advocacy for the Rights and Interests of the Elderly. Randi is an ongoing contributor to the Academy blog.

Academy Guest Blogger
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