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The Importance of an Advance Directive in the Case of Dementia

Filling Living Will Advance Directive form. Top view

Alzheimer’s and other forms of incapacitating dementia is currently the sixth-leading overall cause of death in the United States. In the case of people 65 and older it moves to fifth place and by the time you reach 85 years of age advanced dementia is the third leading cause of death. Couple those statistics with the data that shows approximately two-thirds of Americans have no advance directives in place for end-of-life care at all and even the third that does probably uses the current standard directive which does not address specific wishes in the event of dementia meaning most of us are abdicating our free will to determine our end of life health care with regards to dementia. (

You need advance directives for health care and it needs to account for when you might no longer be able to communicate your desires either for or against life-prolonging therapies because of advanced dementia.

While not all experts agree that another directive is required to specifically include dementia it has been recently argued in the Journal of American Medical Association that most of the usual forms are not helpful regarding dementia. The current forms tend to focus on things such as “permanent coma” or “persistive vegetative state” according to Dr. Gaster and most of the time the forms describe patients who are identified as having six months or less to live. Missing in standard documents are specific instructions, for example, about providing food and drink manually as opposed to through a tube. Dr. Gaster goes on to explain to patients that “somewhere between 20 and 30 percent of us will at some point develop dementia.” (

Dementia is eventually a terminal disease and yet at what point a patient can no longer direct their own care isn’t always obvious or predictable. Arguably by the time you reach a point where you need to decide what you want to be done you more than likely have lost the capacity to do so. Making these choices in advance can actually give hope to aging seniors even without having being diagnosed as having dementia. It allows them to know that their wishes will be respected and that their medically appointed director, often times a family member, will not have to make agonizing decisions about their care. In the absence of a family member with medical power of attorney and advance directive, the default position is deferring decisions to the medical system which has a policy of longevity at all costs which may lead to a prolonged and agonizing death which is hardly a scenario to look forward to.

When you reach the age of 65 and qualify for Medicare you will receive a benefit that covers a visit to a doctor to discuss advance care planning. Specifically, ask about dementia directives in order to supplement the other standard health care directives. Consider that during each stage of dementia you might choose anything in the care spectrum. The spectrum extremes are full life-prolonging efforts or comfort care only in order to ease suffering. Also, consider that you might choose to receive care but only where you live and not in a hospital setting.

Individual states are now scripting their own formats for advance directives that specifically address dementia. Both NY and Washington already have some basic guidelines. Even if your state does not you can still get some counsel from elder law specialists to guide you as to what should be addressed in your advanced directive for dementia. There is a lot to consider. Scripting how you choose to pass is as important as choosing how you live. You are the best person to determine your own path and leave others out of ethical and moral decisions. Contact our South Carolina office today and schedule an appointment to discuss how we can help you with your planning.

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2010 Gadsden Street
Columbia, SC 29201

Phone (803) 799-1700
Fax (803) 728-6718

331 E. Main St, Suite 257
Rock Hill, SC 29730

Phone (803) 909-9377
Fax (803) 728-6718