Memory Mondays: Advance Directives for Dementia

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Planning ahead for health care can be difficult to think about when health isn’t currently a concern. Yet planning becomes increasingly important with age, especially if cognitive decline is involved.

That’s where advance directives for dementia come into play. The five-page document explains how mild, moderate and severe dementia affect patients and prompts them to specify what medical interventions they want and don’t want at each phase. Dr. Barak Gaster, an internist at the University of Washington School of Medicine, created this dementia-specific advance directive.

“Patients stumble into the advanced stage of dementia before anyone identifies it and talks to them about what’s happening,” Dr. Gaster told the New York Times. “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.”

At each stage of dementia, those filling out the form can choose from the following:

-Full efforts to prolong life

– Comfort-oriented care only

– Options for lifesaving treatments

– Avoiding hospitalization and instead receiving care at home

Some experts are skeptical about adding another directive to the docket, but Dr. Gaster argues the original documents aren’t specific enough to dementia.

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

Dementia, however, tends to intensify over years, and there’s no obvious or predictable point at which someone with dementia can no longer voice their care desires. Plus, goals and preferences may change over time.

Leaders of similar movements contend that this particular advance directive for dementia doesn’t involve family members or other loved ones. Still others believe that users need to incorporate the reasoning behind their decisions.

In any case, conversations about future care are crucial, given that a growing number of people will be diagnosed with dementia in the years ahead. Documenting the desires and agreements that stem from these conversations and circulating them to the appropriate parties will then ensure a sense of control over what’s ahead with dementia.