A Primer on Managed Care: Multiple Chronic Conditions

An Advance Directive for Dementia By Barak Gaster

Documents that can guide care as dementia patients’ minds gradually fade.

T he disease many people fear most as they get older is dementia. They worry about the pro- gressive loss of cognitive function and the years of dependence this disease inevitably bring. Also, many people have strong views about which med- ical interventions they would want—or not want— for themselves if they were to develop dementia (Volandes et al., 2009). Every state in our nation has a statutory ad­ vance directive, but these forms generally con- tain little useful information to guide care if someone were to develop dementia. Instead, they focus on rare conditions, such as a persistent veg- etative state or a permanent coma. This creates a major gap in advance care planning because dementia often is the reason that people lose the ability to make decisions about their own care. Why does this gap exist? Partly because of the complex, slowly progressive nature of dementia. This complexity makes it challenging to state one’s views about it, and yet for so many of the years people live with this disease, they no longer have the capacity to guide their own care. In the early stage of dementia, a stage that can last for many years, people often live full

and active lives. This is followed by a gradual loss of the ability to interact with the world around them. Given this slow progression, many people might be expected to want gradu- ally changing goals for their medical care as a dementia illness progresses. A carefully constructed advance directive for dementia, reflecting the stages of the disease and allowing for gradually shifting goals of care for each of the stages, could allow people to express their wishes if they were to develop dementia. Creating a Dementia Directive In 2015, my colleagues and I began to develop a dementia-specific advance directive to address this complexity (Gaster, Larson, and Curtis, 2017). We collected input from experts in the fields of geriatrics, palliative care, and neurology and then pilot-tested versions of the directive with patients. In November 2017, we released an online ver- sion of an advance directive for dementia to the public. It has since been available to all as a free download (Gaster, 2017; www.dementia-direc In the first year after its release, the

abstract Many people have clear wishes about which medical interventions they would want—or not want—for themselves if they were to develop dementia. Standard advance directives tend to offer little guidance, however, when people with dementia begin to lose the capacity to guide their own care. A structured advance directive for dementia can fill this gap, providing much needed guidance to healthcare proxies, who often are left making difficult decisions on behalf of their loved ones. | key words : dementia, advance care planning, advance directives, living will

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