How to foster supported decision making for adults with cognitive impairment

People living with cognitive impairment often are able to make their decisions independently. But as their condition changes, their decision-making abilities change as well.

Elderly hands sewing with a needle and thread at a table with sewing supplies, a younger pair of hands assists at the side.
The paper proposes a three-step model for implementation of supported decision making—identifying the areas of life that need support, identifying the kinds of support needed or wanted, and establishing a formal agreement between the parties involved.

How should people living with mild cognitive impairment or mild stage dementia, their families, and physicians navigate this typically slow and difficult transition? Is there some livable space between what seems to be two extremes—either to try one’s best or surrender and let others take over?

In a paper published in the American Journal of Bioethics, researchers at the Penn Program on Precision Medicine for the Brain (P3MB) provided a comprehensive ethical argument in support of a third way. The authors argue for a novel approach to decision making, called supported decision making.

“We felt like there was a good space for us to look at the tool of supported decision making and think about how that could be used to help people who have progressive, neurodegenerative diseases maintain their autonomy to the greatest extent possible,” says P3MB researcher and co-author Emily Largent. Additional authors include PMC co-director Jason Karlawish.

Supported decision making focuses on what people with cognitive problems can do—with the provision of support. This is in contrast with other legal frameworks, like guardianship, which are designed to restrict a person’s decision-making independence. The authors argue that supported decision making should be routine for people who have problems with their decision-making abilities but not so severe that they cannot make decision altogether.

This story is by Kamila Ahmad and Varshini Chellapilla. Read more at Penn Memory Center.