Dementia is a serious and growing concern in our country and around the world. According to the World Alzheimer Report 2015: The Global Impact of Dementia: An Analysis of Prevalence, Incidence, Cost, and Trends, the number of people living with dementia is forecasted to grow from 47 million in 2015 to 132 million by 2050.
Its onset and progression can be a brutal and heart-wrenching process for both the individual experiencing its effects—and the family members who love them. So, it’s not surprising that this new advance directive option has become available.
But it made me wonder: What’s the difference between traditional advance directives and an advance directive for dementia?
The role of advance directives
After all, the purpose of advance directives is to make an individual’s wishes known about what type of care they would or would not want if they were unable to speak for themselves.
Since the cognitive impairment that’s involved with dementia often results in a person being unable to speak for themselves, I guess I assumed that I’m covered by the living will I already have in place.
But if there is a need for one specific to dementia…maybe not.
So, I did a little research.
Advance directives for dementia vs standard advance directives
In a December 2017 essay in the JAMA (Journal of the American Medical Association) Network, “Advance Directives for Dementia: Meeting a Unique Challenge,” the authors describe their perceived need for an advance directive for dementia:
“Standard advance directives are often not helpful for patients who develop dementia. Dementia is a unique disease from the standpoint of advance directives. It usually progresses slowly over many years and leaves people with a long time frame of diminishing cognitive function and loss of ability to guide their own care. Advance directives typically address scenarios such as an imminently terminal condition or a permanent coma, but they generally do not address the more common scenario of gradually progressive dementia. …
Medical decisions for patients with dementia are typically made by health proxies because patients with dementia, although it progresses slowly over many years, at some point quickly lose decision-making capacity. These proxies often experience enormous anxiety trying to guess their loved ones’ wishes. A dementia-specific health directive could lessen this burden by providing some clarity about patients’ values and goals that could then help support decision making.”From Gaster B, Larson EB, Curtis JR. Advance Directives for Dementia: Meeting a Unique Challenge. JAMA. 2017;318(22):2175–2176. doi:10.1001/jama.2017.16473
Advance directives for dementia aren’t all the same
Having watched this painful scenario play out too many times in both my professional and personal life, my first-glance impression is that completion of an advance directive for dementia might be something I’d consider for myself.
However, as the KHN article notes, this new option is controversial, too—which means my first glance impression might not be capturing all the nuances involved.
The article refers to an advance directive for dementia created by End of Life Choices New York (EOLCNY), which allows an individual to specify their wishes regarding oral feeding by someone else if they have advanced dementia. Here’s how the site describes this:
“EOLCNY has developed the advance directive in response to growing demand for clear language to address specific needs not adequately covered by health care proxies and living wills. The directive for receiving assisted oral feedings has two options:
Option A refuses all oral assisted feedings once the patient is in an advanced stage of dementia and the ability to self-feed and make decisions has been lost.
Option B permits assisted oral feeding in advanced dementia but limits that provision to comfort-focused feeding that must be stopped when the patient becomes disinterested or unwilling to be fed.”From https://endoflifechoicesny.org/directives/dementia-directive/
The KHN article describes why this wouldn’t work in a skilled care facility, since regulations (thankfully) require that patients be fed.
I don’t agree with the EOLCNY approach, since I can’t imagine not feeding someone just because they’re not able to cognitively manage it themselves—or putting a loved one in such a painful position of not helping me if I required assistance to eat.
However, there’s another version of a dementia advance directive, created by the lead author on the JAMA Network article, Barak Gaster, MD. Dr. Gaster refers to his version as a “Dementia Directive” and it doesn’t specifically refer to oral feedings at all.
Instead, it provides various options for three stages of dementia: mild, moderate, and severe. The options for all three stages are the same, which you can read with a free download of the form. I like this version much better, since it is more detailed and doesn’t say anything about oral feedings.
Since advance directives are state-specific, another question I had was whether these new directives are legal and honored in all states. I figured that was one of the questions that would be answered on the FAQ page on Dr. Gaster’s site, and was happy to find that to be the case:
“The Dementia Directive available here is a written communication to help guide those who might need to make medical decisions on your behalf in the future. As such, it is a way to record your wishes. The guidance it provides is not legally binding. Family members and physicians will still need to address clinical situations as they arise and decide how a dementia directive like this might provide guidance in a given situation. That’s why it is important to talk to those closest to you (who might later help make decisions about your care) about your wishes, so that they understand as clearly as possible what your wishes would be.”From https://dementia-directive.org/faqs
In this context, the Dementia Directive is described on the site as both a standalone document and as a supplement to traditional advance directive forms.
This new initiative is already gaining steam—with KHN reporting that Dr. Gaster’s version, published in 2018, has been “downloaded 130,000 times after it was mentioned in a New York Times story and continues to be retrieved about 500 times per week.”
Likely, there will be a lot more momentum on this front—especially with National Healthcare Decisions Day (NHDD) around the corner on April 16th.
Talking about end-of-life issues ahead of time is so important, and something I’m passionate about—which is also why I’ve become a Conversation Champion with The Conversation Project.
As I close, one caveat I need to add is that some of the organizations referenced here support medical aid in dying initiatives (aka physician-assisted suicide)—which is not something I support.
If you want to learn more about advance directives, here are a few websites that can help you get started:
- The Conversation Project: Dedicated to “helping people talk about their wishes for end-of-life care.”
- Five Wishes: A program of Aging with Dignity.
- PREPARE for your care: Aims to help make medical decision making easier for people and caregivers. Includes free state-specific advance directive forms in both English and Spanish that you can download.
- National Hospice and Palliative Care Organization’s (NHPCO) CaringInfo: Includes general information and free state-specific advance directive forms that you can download.
- National POLST Paradigm: Includes detailed information about Physician Orders for Life Sustaining Treatment (POLST), as well the status of each state regarding its use of POLST.
- Advance Directive for Dementia: “A simple way to document the medical care you would want if you had dementia.” Includes a free download of the Advance Directive for Dementia form.
How about you?
What do you think of the new Dementia Directive? Please join the conversation by commenting below.
The information provided here is for educational purposes only. It is not intended to be used as medical, nursing, legal, financial, tax or any other type of professional advice. You should always discuss your individual needs with the appropriate expert.
Feature photo by Helloquence on Unsplash.