Health Directive for Dementia

Probably the biggest fear I have when it comes to aging is developing some form of dementia, like my mother did. Even now, when I can’t immediately think of a word or someone’s name, I worry this may be the beginning of memory issues.

Next June, I will celebrate my 77th birthday, so I am smack dab in the middle of the years when people may begin to experience progressive memory issues. I do what I can to keep my mind agile — walk every day, play word games and other brain-challenging activities, and continue working as a freelance writer.

In October 2018, I experienced a significant fall, hitting my head, which resulted in serious post-concussion symptoms that impacted my cognitive and physical abilities. Fortunately, testing done by a neuropsychologist indicated that my brain was “working just fine,” according to the test results. That period of impairment brought right to the fore how much I cherish my mental faculties.

One of the best things I have done for myself now to prepare for any eventual dementia is to have a Health Directive for Dementia, which indicates what I want done by my family, physician, health proxy with power of attorney and people who would be taking care of me if I were to develop worsening dementia.

People with advancing dementia lose the ability to make decisions for themselves, making it necessary for families to make medical decisions for them, hopefully based on a medical Healthcare Advance Directive completed while they were legally competent.

The Health Directive for Dementia, or a Dementia Provision as an Advance Directive Addendum, is a supplemental instrument to the medical directive that can ease the burden of families in making end-of-life decisions. Having both the medical and dementia directives in the hands of my family and physician allows me to feel more secure that I’ll receive the care I want.

By providing guidance today, I am helping the people who will be caring for me in the future.

If I develop serious dementia, and I can’t understand what’s happening around me, I wouldn’t want medical care that would prolong my life, but rather just keep me comfortable.

The Health Directive for Dementia describes each stage of dementia and gives choices for the goals of medical care I want for myself if I were at a particular stage of dementia. Choices at each stage range from living as long as I could, including restarting my heart, to not being taken to the hospital, through having a Do Not Resuscitate (DNR) order, to receiving comfort-oriented care only.

The newest version of the Oregon Advance Directive form has an additional provision in which the list of instructions of what I want if I am disabled by dementia may be initialed.

A separate Dementia Provision may also be added to more thoroughly outline my wishes.

I do not fear death. I do fear a life of not knowing who I am or where I am, not able to experience the joys of life, and not knowing my friends and family. I want to ensure that my wishes are clearly spelled out and understood by those who may be called on to make decisions on my behalf. I don’t want my sons to have to guess what I might want.

Several different forms for a Dementia Directive are available online at www.dementia-directive.org and www.compassionandchoices.org. Medical Advance Directives are available from your physician or on the Oregon Health Authority website as well as from hospitals and hospices.