You may have heard of an advance directive, a document all adults should prepare, naming a person to speak for them if they cannot speak for themselves and setting forth their care wishes. Now, the New York Times reports that a group of experts in care for older people have developed a dementia directive. It is designed specifically to honor the care wishes of people living with dementia, a cohort of about 5.3 million older Americans.
Unlike an advance directive, with a dementia directive, people specify their care wishes at each stage of dementia. It explains the effects of mild or early-stage dementia, as well as moderate or mid-stage dementia, and severe or end-stage dementia. And, it asks people to set forth the kind of medical interventions they would want at each stage, offering a set of options.
Advance directives can be enormously helpful in most instances in which patients are unable to express their care wishes. But, the creators of the dementia directive say that advance directives do not address the care needs of patients with dementia. They tend to be written for people who have been deemed to be terminally ill, with six months or less to live.
People may live for many years with dementia. So, the dementia directive offers four different types of care options for people with dementia at each stage, ranging from “full efforts to prolong my life” to “comfort-oriented care only, focused on relieving suffering.”
The dementia directive is a new concept and time will tell whether it takes off or not. Regardless, people should speak with the people they know and trust about their care wishes down the road. You should have those conversations to help ensure you enjoy the quality of life you want to enjoy and are not forced to live a life that you would find unacceptable. Whatever your age, share your views on the kinds of medical interventions you would want and those you would not want if you could not express your wishes yourself.
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