The Blog to Transform Advanced Care

Advancing Care through Innovation, Observation and Collaboration.

By: Barak Gaster, MD

Dementia is one of the most challenging illnesses we face. As people experience the gradual loss of ability to understand conversations, become increasingly dependent on others for self-care, and frequently encounter agitation and distress, dementia is a difficult road to travel.

The number of people living with dementia is expected to double or triple in the coming years as baby boomers reach their 70’s and 80’s, raising the prospect of a growing wave which will impact individuals, families, and society at large.

One of the main aspects of dementia which makes it so difficult is patients’ loss of ability to make medical decisions early in the course of their disease. Families are then left having to make medical decisions on behalf of their loved ones for many years.

Helping families decide what their loved ones with dementia would have wanted therefore emerges as a central challenge in dementia care. Even if families are able to think back on past conversations they may have had, their memories may be fuzzy, and it may be hard for them to disentangle their own feelings and emotions from what their loved ones’ preferences might have been.

Some look to standard advance directives for guidance on this issue but are disappointed to find that such documents contain almost no information which applies to dementia.

So starting in 2016 my colleagues and I set out to create a dementia-specific advance directive. Gathering input from experts in the fields of geriatrics, palliative care, and neurology, we tested various versions with patients, then posted it online in early 2018 for the public to download for free.

After articles in JAMA, the NY Times, and on NPR, more than 100,000 people across the country accessed it in its first year alone, with downloads continuing at a rate of about 2,000 per month.

The dementia directive provides a structured way for people to indicate what medical care they would want – or not want – at each of the stages of dementia. It’s designed as a communication tool to help inform future proxy decision makers about people’s preferences for care if they develop dementia.

Those involved in advanced care for patients with dementia know how often it involves complex goals of care discussions with families. A dementia directive can bring the voice of the patient to these conversations.

When should a dementia directive be offered? Ideally after age 65, when the risk of dementia starts to rise, but before cognitive impairment occurs. As people’s minds begin to fade, many lose the ability early on to fill out an advance directive, so doing so before symptoms occur is best.

The dementia directive is a novel tool to help care givers honor the wishes of those who in the future may no longer be able to speak for themselves.

Given the rising prevalence of dementia, it’s important that we offer people the opportunity to express their wishes for medical care now, before dementia strikes. And when people’s preferences have been documented, we owe it to them to try to incorporate those wishes when making decisions on their behalf.

Barak Gaster is a professor of medicine at the University of Washington. The advance directive for dementia he helped develop is available for free at dementia-directive.org.

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