Angie sits on one side of a large desk, poring over the calendar of events for the public library in St. Augustine, Florida. Her eyes sparkle with interest, her brow is furrowed in concentration, and she is writing down each activity that interests her in a small calendar. Crafting, crochet club, meditation, and book club all get noted, as does every Pilates class.
On the other side of the desk, Melanie Chandler looks on. “OK, Angie. Rather than writing everything down on your calendar right now, let's just see what might be interesting and highlight that first.” Since Angie no longer drives, Chandler suggests selecting the highest priority activities so she can ask her mother or sister for a ride or, if they're unavailable, arrange a lift through a ride-booking company.
Chandler then helps Angie break it down even further, noting what she'd need to do to sign up for each activity. “Write it down,” she says. “And write in enough detail that if you don't remember writing it, you know what you meant."
In the to-do section of her calendar, Angie carefully pens a list: Go to library; pick up book; ask about signing up for crochet, crafting, and book club. With that brief list of to-dos, Chandler has pointed her patient gently in a direction she believes will prepare Angie not just for the coming month but for the years ahead.
Angie, 58, has mild cognitive impairment (MCI) — in her case, caused by a rare neurodegenerative disorder called Cockayne syndrome. And she's here in Chandler's office with her mother, Ann, as a participant in HABIT, a 10-day intensive program hosted by Mayo Clinic and developed to improve quality of life for both patients and their spouses, children or other caregivers. It's one of the very few options available for people diagnosed with MCI.
MCI is a relatively new diagnosis, first defined in the medical literature in 1999 and described as something between normal age-related memory decline and mild dementia. It's diagnosed only after an official neurocognitive assessment, but many physicians have been hesitant to have their patients tested. That, they say, is largely because there's little they can prescribe that has been rigorously tested and proven to make much of a difference.
"The substantial majority of people diagnosed with MCI are generally handed a list of behaviors that we broadly know to be helpful, then left to fend for themselves and told to check in with their neurologists on a regular basis to monitor things,” says Justin Miller, director of neuropsychology at Cleveland Clinic's Lou Ruvo Center for Brain Health in Las Vegas. Suggestions usually include writing things down to aid memory, regular exercise, a diet low in fat and high in fresh fruits and vegetables, staying socially active, and engaging in various intellectually stimulating activities (reading, computer games, crossword puzzles, etc.).
But prescriptive lists like this can feel vague and hard to implement, especially when simply getting through the day feels increasingly difficult. Research backs this up, showing that patient follow-through on such recommendations is minimal, often because there's no support system in place.
That's what led Chandler, a neuropsychologist at Mayo Clinic in Jacksonville, Florida, and her colleagues to develop the program that launched in 2008 as HABIT — short for Healthy Action to Benefit Independence & Thinking. “At the time, the thinking was that this is a progressive illness, so why do rehab? That's what you do if someone's going to get better,” Chandler says. “But our thinking was that we can do rehab to try to maintain function, quality of life and mood for as long as possible.”
There's no way of knowing whether MCI will lead to dementia; there's also no way to guarantee that it won't. So rather than promise the unattainable, HABIT aims to help everyone who goes through the program create life plans and day-to-day routines that will benefit them for years to come.