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Advance Care Planning for Alzheimer’s Disease or Dementia

Only mentally competent adult residents suffering from a terminal illness with a prognosis of 6 or fewer months to live are eligible to use their state’s death with dignity law.

You must be of sound mind, i.e. be able to make your own healthcare decisions, when making requests for medications under aid-in-dying laws, and must be able to self-administer and ingest the medication at the time of your choosing.

While the final final determination of qualification is up to two physicians, generally speaking if you suffer from Alzheimer’s disease / dementia, you are ineligible to qualify for medication under death with dignity laws because your judgment or decision-making is impaired by the illness; if you are in early stages of the illness without cognitive impairment and do not have another disease that is causing a terminal illness, you do not qualify due to not having a terminal diagnosis.

Advance Directives for Alzheimer’s / Dementia

Three advance directives have been developed in the U.S. to provide a measure of control to those suffering from the illness, with the aim to help you make your intentions known in case you are no longer able to communicate.

Disclaimer: Death with Dignity National Center has not endorsed any specific advance directive for Alzheimer’s / dementia; information provided on this page is provided strictly for educational purposes.

“Alzheimer’s Disease and Dementia Mental Health Advance Directive” (2015) by End of Life Washington

This was the first advance directive of its kind focused on these specific challenges.

“Health Directive for Dementia” (2017) by Dr. Barak Gaster, Washington

“Advance Directive for Receiving Oral Food and Fluids in the Event of Dementia” (2018) by End of Life Choices New York

From End of Life Choices New York:

The directive provides a means for those diagnosed with dementia, while still retaining their decision-making capacity, to limit assisted feeding by hand when they reach the final/terminal stage of the disease. This terminal stage can last for months or even years if the patient continues to receive assisted hand feeding and other life-prolonging care. <

The instructions in the directive become effective when the patient’s appointed health care agent, in concert with the primary care physician, agrees that the patient is now in the final stage of dementia and is unable to make treatment decisions or to self-feed.

Our document permits a patient, while still decisionally capable, to choose between: (a) stopping all life-prolonging measures including assisted oral feedings, or (b) limiting hand feeding to comfort-focused feeding regardless of weight loss or intake. Either choice would be implemented along with thorough palliative or hospice care.

Standard vs. Alzheimer’s/Dementia Advance Directive

Unlike the standard advance healthcare directive, which specifies what medical actions should be undertaken if you are too ill or incapacitated to make decisions, an Alzheimer’s / dementia directive covers decisions involving day-to-day choices such as where you would like to be treated, who the preferred caregiver is, and who’s authorized to be your healthcare agent.

The Alzheimer’s directive is more about the challenges of living with Alzheimer’s, such as where are you going to live, how your care is going to be paid for, what to do with your pets, when to stop driving, what happens when you can no longer have intimate relations with your spouse or partner, not medical issues.

—Robb Miller, Former Executive Director, End of Life Washington

Like all directives, this one cannot account for every care decision that may arise. We suggest writing a personal statement, describing your history, values (including religious beliefs), and any other information that will help others understand or at least have a sense of who the directive’s author is. This allows caregivers to make informed decisions based on more complete information and allows them to fill in the gaps in unanticipated situations.

Legal Force of Alzheimer’s / Dementia Advance Directives

Alzheimer’s directives are documents which help the patient’s family and caregivers know their preferences for healthcare. They may not be legally binding outside the states where they were developed, and in most cases their legality or whether they’re legally binding has not been tested within those states either.

Our best advice is to have your directive witnessed and notarized, and to share it with family and caregivers in order to let them know your preferences.

History of the Alzheimer’s and Dementia Directive

A number of factors contributed to the creation of the nation’s first Alzheimer’s / dementia directive. In 2003, Washington State enacted RCW 71.32, which allowed for the creation of mental health advance directives. This law inspired Seattle University School of Law Associate Professor Lisa Brodoff to think about a directive for Alzheimer’s and dementia.

In 2010, Brodoff published the article “Planning For Alzheimer’s Disease with Mental Health Advance Directives” in the Elder Law Journal. The article describes the life changes that accompany Alzheimer’s disease progression, such as alterations in intimate relationships and the inability to engage in actives of daily life such as driving. Brodoff also described the practice of Medicaid divorces, in which people divorce to protect assets due to incredibly expensive Alzheimer’s care. Brodoff concluded with a suggestion for a personal advance directive addressing these scenarios. She then partnered with Robb Miller to co-author the directive.

Resources

Follow the links in the open to the specific advance directives for Alzheimer’s / dementia.

Further Reading