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An Easy Way To Document The Medical Care You Would Like To Receive If You Develop Dementia

Planning for the future is about more than ensuring your financial fitness.

An effective retirement plan must also address your physical and mental wellness. It’s not enough to just get our checkups, take our prescriptions and generally try to live healthy lives. It’s critically important to think about what would happen in the event of a medical emergency – one that occurs suddenly, or a condition, like dementia, which unfolds slowly.

Of course, if you are able to speak with your doctor during such a crisis, then questions about the kind of care you want to receive are easily answered. But what if you can’t communicate?

This is where a crucial long-term planning tool comes in – the Advance Directive. This simple but powerful legal document details your wishes for the care you want (and don’t want) to receive. It speaks for you when you can’t speak for yourself.

These documents are robust, and cover topics like who will be your agent under the Advance Directive (your appointed decision maker) and what level of life-sustaining treatment you would like to receive if you are in a permanent state of unconsciousness or are terminally ill.

I know. It’s not pleasant to think about. But making decisions now and discussing them with your loved ones takes the pressure off them to make difficult choices in a very stressful time.

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Typically, Advance Directives kick in during crisis situations, when people have suffered a stroke or other health event that renders them incapacitated, or unable to communicate. Some doctors are taking a fresh look at this document to fill what they see as an important hole in its scope – the event that incapacity develops slowly, over time.

Their target: dementia.

According to a The New York Times article, an internist at the University of Washington School of Medicine, Dr. Barak Gaster, has made modifying the Advance Directive a focus of his work for the past three years. With the assistance of specialists in psychiatry, geriatrics, neurology and palliative care, he has developed a new five-page document that he has titled the Dementia-Specific Advance Directive.

Gaster told the Times, “The standard Advance Directives tend to focus on things like a ‘permanent coma’ or a ‘persistent vegetative state. Most of the time, they apply to a person with less than six months to live.”

He went on to explain that dementia is different. Although terminal, it is a progressive disease that progresses slowly, often over a period of years. The varied stages and timelines of the development of dementia make it difficult to pinpoint when a person can no longer oversee her own care.

“Patients stumble into the advanced stage of dementia before anyone identifies it and talks to them about what’s happening,” said Gaster. “At what point, if ever, would they not want medical interventions to keep them alive longer? A lot of people have strong opinions about this, but it’s hard to figure out how to let them express them as the disease progresses.”

Here is the gap Gaster is trying to fill within the current construction of the Advance Directive. In his new version, a person can specifically state their preferences should they develop dementia. And the document allows patients to describe their desire for care during mild, moderate and severe stages of dementia.

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Describing his push for the Dementia-Specific Advance Directive, Gaster said, “Whereas a persistent vegetative state occurs rarely, dementia strikes far more commonly.”

Just how commonly is still largely unsettled among doctors and other medical professionals, but Gaster estimates that “somewhere between 20 and 30 percent of us will at some point develop dementia.” In a study published in the journal Demography last year, researchers estimated that for the group born in 1940, the lifetime risk for dementia at age 70 was 30.8% for men and 37.4% for women.

Other experts weighed in on the proposal for a new, dementia-specific version of the Advance Directive. Many pointed to the fact that doctors and nurses are already saddled with paperwork, and that this new form could lead to confusion. Others disagree and tout the importance of planning for all possible health events.

What all agreed on, however, was that all forms aside, we need to talk to our families about the kind of medical care we would choose. Ellen Goodman, founder of The Conversation Project, said, “We need to have families involved. No checklist on earth is going to cover everything you encounter. Most important is the conversation with the decision-maker. That person has to understand what you value and what’s important to you.”

The lesson here is that we do best to talk to our family, friends and doctors about our wishes, no matter how unpleasant the topic may be. If we explore the issues of what quality of life we find acceptable and which medical procedures we would ourselves agree to, we lift that burden off our loved ones. And ultimately, we can rest assured that we, no matter what, are the ones directing our care.

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