Sunday September 21 is World Alzheimer’s Day, so advocates are spreading the word about tools available to help families talk about dementia. A new card game called the Dementia Deck will make its debut, intended to spur conversations while a patient still has clarity.
Lisa Pahl, a medical social worker and owner of Death Deck, said it is important that patients communicate their wishes, so caregivers aren’t left to wonder.
“Some of the main decision points are when a person is no longer able to swallow, would they want a feeding tube?” she said. “When they no longer recognize people, would they want to continue with cancer treatment, if that was something that was recommended?”
The Dementia Deck is the third in the Death Deck series. It helps families talk about things like advance directives, hospice, and palliative care, but also about ways to give them more “good days” filled with things that bring them joy, like hobbies or music. The Dementia Deck costs just under $30 and is available on the Death Deck website.
Pahl collaborated with Jessica Empeño, a medical social worker with the nonprofit Compassion and Choices, to adapt the Death Deck using the organization’s Dementia Values and Priorities Tool. Empeño said the online tool is for everyone, not just people with dementia.
“The Dementia Values and Priorities Tool is a free planning resource to include dementia in end-of-life conversations. It creates a free dementia directive that they can include with their advanced directive,” she explained.
The priorities tool is available in English, Spanish, and Chinese. According to the Alzheimer’s Association, about 720,000 Californians over age 65 live with the disease. Almost 1.4 million people in the Golden State serve as their caregivers.
