The Dementia-Specific Advance Directive Could Make Life Easier for Families and Their Elderly Loved Ones

When you put your affairs in order, there are a few standard steps. You create a Will or a trust, name your beneficiaries and your power of attorney, and fill out an advance directive – a written statement that outlines what your wishes are when it comes to your healthcare. Advance directives may say that you don’t want a breathing tube, or that you should not be resuscitated. They can state what to do if you slip into a coma, or a permanent vegetative state.

But very rarely do they discuss what should happen if you develop a disease like Alzheimer’s or dementia – until now.

Dr. Barak Gaster of the University of Washington School of Medicine has put together a free form designed with dementia patients in mind. As he told The New York Times:

“Patients stumble into the advanced age of dementia before anyone identifies it and talks to them about what’s happening. 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.”

“As the disease progresses” is the critical reason why this directive is so necessary. Under most circumstances (though every individual is different), an advance directive goes into effect when a person is declared incompetent (or incapable, such as with patients in a coma) in regard to making their own decisions. Dementia progresses differently for everyone, so while there are certainly guidelines for when a patient might no longer be able to care for him or herself, “The point at which dementia patients can no loner direct their own care isn’t predictable of obvious.”

Furthermore, there is always the chance that a family will disagree on how to proceed – especially if specific instructions were not given, or if a patient has expressed wishes that run counter to an advance directive. By completing the form, you can outline specifically what level of care you would like (it lists four different categories) at each stage of the disease’s progression.

Fast facts about Alzheimer’s disease and dementia

The Alzheimer’s Association reports that there are more than 5 million people in the US with Alzheimer’s, the most well-known type of dementia. It is the 6^th leading cause of death in this country, its fatality rate has risen by 89% since 2000.

While the exact reasons why someone might develop dementia are unclear, there is a strong genetic component: people with family members afflicted by the disease are more likely to develop the disease themselves. Brains afflicted with Alzheimer’s also have tau tangles, just like athletes with CTE, so it is possible that repeated brain trauma can lead to certain forms of dementia, such as frontotemporal dementia.

Dr. Gaster may not have developed a cure for Alzheimer’s, but he is providing some peace of mind for people who have signs of, or are at risk of developing, the disease. It’s one less thing to worry about, and one more way you can ensure that your wishes are followed.

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