September is World Alzheimer’s Month, and advocates are working to bring more awareness to the disease through practical tools, helping to encourage important conversations for families.
The Alzheimer’s Association reported that more than 250,000 Illinois residents age 65 and older are living with Alzheimer’s disease.
Lisa Pahl, licensed clinical social worker, created a new card game called the Dementia Deck to help families talk through tough topics like advance directives, hospice, and palliative care. Pahl said it is important for families to be proactive in having the conversations so caregivers are better equipped to honor patient wishes.
"There are also questions in there that really just get to know what brings that person joy, what a good day looks like for them," Pahl pointed out. "Because we want that to be part of the conversation as well."
The Dementia Deck is the third in the Death Deck series, which promotes end-of-life planning. It will be released on the Death Deck website on Sept. 21 for World Alzheimer’s Day.
Pahl collaborated with Jessica Empeño, national director of clinical engagement for the nonprofit Compassion & Choices, to adapt the Death Deck using the organization's Dementia Values and Priorities Tool.
Empeño noted the online resource is available in English, Spanish, and Chinese and is for everyone, not just people with dementia.
"That really is a planning tool that people can use," Empeño emphasized. "It creates a free dementia directive for them that they can include with their advanced directive."
Both Pahl and Empeño said they wanted to lighten what can often feel like a very heavy topic, while validating and normalizing the conversations. Pahl stressed the importance of utilizing such tools with families and friends to ensure people’s quality of life and care, and that end-of-life desires are fulfilled.
"We're really trying to help increase people's autonomy and sense of control around this topic," Pahl underscored. "We know there's a lot of fear. So many people are impacted by dementia, and quite honestly, have a lot of thoughts and opinions on what they would want. We just need more tools to talk about it."
This story was originally published by the Illinois News Connection/Public News Service, a partner with KRCU Public Radio.
