“If you look fat, he’s gonna say you’re fat.”
Cousins Jodie Finney and Alicia Christopher know the challenges of public outings all too well—especially when accompanying someone with frontal lobe dementia, like Christopher’s father, known as Poppy.
Trips to a restaurant or grocery store could quickly become a minefield of potentially embarrassing or offensive interactions with her father, who was beginning to deteriorate.
“If you have tattoos all over your body, he’s gonna say, ‘Why would you ever do that?’ No filter whatsoever, so it gets a little difficult taking him out into public.”
Finney was already dealing with a similar scenario following her mother’s diagnosis of Alzheimer’s in 2017, and the two found themselves struggling to make sense of the diagnoses, while also sharing their experiences and challenges with each other. In her desire to find a solution, Christopher began proactively communicating with restaurant servers, grocery store clerks and others—once again proving the old adage that necessity is the mother of invention.
“She was writing down these cards saying, ‘My dad has dementia, please have patience with me. I’ll give you a good tip,’ all that kind of stuff,” she said. “And it changed the whole course of the interaction. Everybody, once they kind of knew the situation, they were able to be much kinder and more compassionate. It made the lunch just so much more enjoyable—not only for Alicia, but for her dad.”
Using her homemade cards as inspiration, a new nonprofit was soon born. The two launched The Caregiver Club in early 2022 as a way to more directly help others like them.
“It’s not that we’re not obviously helping the individual with dementia, but we’re helping them through helping their caregivers,” Finney said. “When the caregivers feel supported and rested, they’re going back to caregiving and giving those individuals with dementia the support that they need.”
That help comes through three products the group currently sells through its website: The Caregiver Club Gift Set, which includes 20 preprinted cards (standard business card size), a purple amethyst and gold-plated adjustable bead bracelet, and a wearable magnetic button; a three-pack of the magnetic buttons; and a refill pack of 20 additional cards. All are designed to help decrease what Finney calls “the wheel of caregiving stress.”
“We are here to support, validate, give them a little bit of respite—something to pat them on the back to say, ‘You’re doing a good job,’” she said. “Our cards are really meant to be a resource right now … Going out in public is stressful, but going out in public is normalizing and necessary and it’s good for socialization. We can give you a tool to be out in the community and decrease that one stress. You can go back to doing things that you and your loved one love doing without feeling like you’re all alone.”
While Finney admits they’re still learning the best way to educate caregivers how to best use the cards and incorporate them into their daily habits, they’ve already heard positive – and appreciative – feedback from current customers.
Mimi Schmid lives in the St. Louis area, and she and her brother take turns taking their father, who lives with Alzheimer’s, to lunch a few times a week. She’s already used the cards in public.
“I handed one to a hostess as she was seating us at a restaurant. She looked at me for a second and then it all registered. She communicated it to our waiter, and there was definitely a new level of patience and understanding. He was friendly and engaged and not at all put off by my dad’s indecisiveness or random comments or statements that sometimes make no sense to him.”
Finney confirmed that once a caregiver gets used to keeping the cards handy everywhere they go, the results are usually the same.
“The feedback has been outstanding,” she said. “Once they actually use the card and see the interaction between your restaurant server and them, that’s when they get it. They come back to us … and say, ‘Oh my gosh, I finally actually used your card, and it was life-changing.’”
For the two cousins, they see endless possibilities for The Caregiver Club, and are already exploring a number of new initiatives and long-range goals—everything from dementia-friendly exercise groups and caregiver outings to training programs for restaurants and staff. The group is already offering caregiver respite packages and recently hosted a caregiver and companion social. Yet, they know there will always be a need for simple tools like the cards, which are already making a difference in the lives of many caregivers and their loved ones with dementia.
“For people with Alzheimer’s, everything and anything can be confusing or overwhelming to them,” Schmid said. “So, any small things to make everyday experiences be more positive and simple are so helpful. It’s a great idea.”