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Alzheimer's Disease and Dementia Mental Health Advance Directive

Portrait of Alzheimer's by GollyGforce on Flickr
Portrait of Alzheimer's by GollyGforce on Flickr

This blog post is the third in a series of guest posts by Arashi about end-of-life care planning and documentation in honor of National Healthcare Decisions Day.

Last December, Compassion and Choices of Washington unveiled a new kind of advance directive for life planning while living with Alzheimer's Disease and Dementia. This document is the first of its kind focused on these specific challenges. With a similar purpose as the living will, the Alzheimer's and Dementia directive aims to have a person's intentions known when the person isn't in a place to speak for him or herself.

The Alzheimer's directive is different from the usual advance health care directive. An advance health care directive is used to specify what medical actions should be undertaken if the patient is too ill or incapacitated to make those decisions. A typical question for those completing these documents is whether or not the patient wants aggressive medical treatment—such as a feeding tube or artificial ventilation—when the patient is dying or in a persistent vegetative state.

The Alzheimer's directive doesn't specify medical decisions, rather decisions which involve day-to-day choices. Robb Miller, executive director of Compassion and Choices of Washington, told me about the type of decisions covered by this new directive, "it's 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, those kinds of things, not medical issues."

There were a number of factors which contributed to the creation of this 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 a journal article in the Elder Law Journal entitled, "Planning For Alzheimer's Disease with Mental Health Advance Directives". Within the article, Brodoff describes the life changes that accompany the Alzheimer's disease progression such as alterations to intimate relationships and the loss of driving abilities. She also described the practice of Medicaid divorces in which people divorce to protect assets due to incredibly expensive Alzheimer's care. Brodoff concluded this article with a suggestion for a personal advance directive addressing these scenarios. Robb Miller read her article and was immediately interested in the specialized advance directive. Brodoff and Miller continued Brodoff's work by coauthoring and creating this directive which is available to the public.

The directive provides opportunities for a person to state wishes about where he or she would like to be treated, who the preferred caregiver is, and who's authorized to be a health care agent. The directive allows the patient to rank health care institutions in order of preference, and it even includes a space to discuss how one would like his/her pets to be cared for.

This Alzheimer's directive can't account for every care decision that'll need to be made. To that end, Miller strongly suggests filling out a personal history and care values statement. This statement is a description of your history and values. In our conversation, Miller spoke about this process, "an important part of making the directive is expressing your religious beliefs or what's really important to you so that people understand or at least have a sense of who you are." This empowers caregivers to make better decisions based on more complete information and allows them to fill in the gaps when situations hadn't been anticipated. Miller spoke of care being markedly better when caregivers had this added insight.

Another highlight of the Alzheimer's and Dementia advance directive was the commitment to patient centered language. Even the instructions included the advice: "This is your document. When completed, it should express your wishes. Cross out sections, sentences, or words with which you don't agree." Miller and Brodoff created this directive to be empowering to those who've lost the ability to speak for themselves. Miller spoke about this approach: "One of the things this directive does so well is reinforce that the person making this document doesn't want their wishes to be ignored, doesn't want someone else's judgment substituted for their own."

No one can precisely predict the exact life changes that'll occur during the course of a mental decline due to Alzheimer's and Dementia. No one can predict the type of health care setting the person will need or exactly how quickly one will progress from the early stages of dementia to the late stages of incapacitation. Alzheimer's disease presents a series of unknown questions, but this specialized advance directive combats this mystery. Miller summarized its usefulness, "there is just no downside to documenting your wishes. And there are many many downsides to being unprepared and not documenting your wishes... Making advanced directives whether it is medical directives or Alzheimer's directives is a gift. It is a gift to your loved ones, it is gift to your caregivers, it is a gift to your family."

Posted on April 16, 2013 in Advance Care Planning, Personal Stories


Posted by Glen Lasanta (not verified) on January 15, 2014 at 09:37 a.m.

Hospice care supplies help in the house for individuals ultimately phases of dynamic, not curable ailments. Inpatient hospice care could additionally be supplied to patients which have symptoms that could no more be controlled in the house setup. Hospice is dedicated to giving treatment at residence where family members and patients prefer to be.

Posted by Lynda Reed (not verified) on June 21, 2014 at 02:45 p.m.

My father was diagnosed with Alzheimer's 6 months ago at age 79. His wife of 30 years is 16 years younger than him and has been showing signs of moderate dementia for 4 years now. All information I've found on dementia says plan early. Unfortunately by the time anyone seeks out support for family members with dementia, it's too late to "Plan Ahead.' My father refuses to sign over Power of Attorney to anyone. What can be done once your parents are already mentally incapacitated?

Posted by Melissa Barber on July 2, 2014 at 12:21 p.m.

Thank you for your comment, Lynda. I'm sorry to hear of your father's mental decline. It's true, planning ahead, talking about end-of-life care wishes, and documenting his wishes is optimal, but his situation is by far more common than people who've thoroughly planned ahead. This varies by state, but when a person is mentally incapacitated and hasn't specified a health care proxy decision maker, the decision likely will rest in the hands of his spouse. If she's not competent to make medical decisions, the next person in line is usually the oldest adult child. Again, this is just a likely scenario; I encourage you to check on the laws of the state where he lives to find out more.

I also encourage you to chat with other family members and reflect on how he lived to see if you can ascertain what his end-of-life wishes may have been. These open discussions can help you avoid family strife down the road when some more difficult decisions (i.e. medical interventions such as a feeding tube, etc.) may need to be made.

I hope this helps. Please don't hesitate to contact me if you have more questions:

Melissa Barber
Director of Digital Communications
Death with Dignity National Center

Posted by Kelley VanWagner (not verified) on July 30, 2015 at 05:15 p.m.

My husband, Dr. James VanWagner died 11/29/2014 from early onset Alzheimers secondary to head trauma from football concussions. We were open and aware of the process of this life limiting disease. Jim had made it very clear what he wanted, yet I was still faced with so many decisions we hadn't addressed or anticipated. The medical community, from his first Neuro appointment to his last hospice visit played an important role. As prepared as I thought we were and as armed with ongoing education and support as I could absorb, I still felt fragmented when I became the primary decision maker. We knew we were about 10 years too soon for Alzheimer's, there would be no cure or prevention or possible diagnose of CTE before death in his lifetime. As Alzheimer's progresses and their world gets smaller, so does the primary caregiver in many instances. A clearer guideline of Jim's wishes for specific issues would have eased my burden tremendously. I also feared if something happened to me, no one knew what Jim had wanted. A guideline that the newly diagnosed and still cognitive patient could create would be a reference for family and caregivers involved with their care. It would decrease some stress on the primary caregiver which in turn could decrease the illness they themselves suffer. Instead of us fumbling and guessing and making decisions behind closed doors, we could honor their wishes openly from the start.

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