Living With Mild Cognitive Impairment

"By intervening and helping implement some of these healthy strategies into their lifestyle, the idea is that many can help delay or even prevent the conversion from MCI on to dementia,” Chandler says. “If that's not possible, if they're on the path toward dementia, the program provides planning for the future and a better understanding of what to expect so they have important plans in place and have the important conversations they need to have."

Over the 10-day training, Chandler and her Mayo colleagues cover yoga, mindfulness, brain fitness, healthy eating habits, and important legal tasks that are often neglected, such as power of attorney and advance directives. They engage participants in separate therapy groups — one for the patients and one for the care partners, most of whom say it's the first time they've been able to talk with people in similar situations.

At the center of HABIT is something called “individual memory compensation training,” a calendar and note-taking system that serves as a stand-in for working memory. Chandler spent a long time looking for just the right setup: a checkbook-sized calendar with a single day's schedule on one side and a space for to-dos and notes on the other. It's large enough to handle faltering handwriting and small enough to fit in the front pocket of a button-down shirt. It's useful enough that Chandler and the rest of the program directors have adopted it for themselves. And it's simple enough that the habit of jotting down entries and syncing them with a caregiver can remain reliably in place for years.

The system bolsters not just memory but a sense of independence. It's based on a concept called “behavioral contracting.” “We know from psychological research that when people write things down they tend to follow them better. And there's a sense of ownership if you've committed to something in writing that you plan to do,” Chandler says.

Boost Your Brain Health With Staying Sharp

Early studies showed that, compared with a control group, people who had been trained in the HABIT system (versus those who'd been told to use it but not coached in its use) were largely keeping up their calendars six months after the training ended. Care partners in the group receiving training reported significantly improved moods, while those in the control group reported worsened moods and increased caregiver burden.

After a year, there was also a marked difference in cognition: Those with MCI who hadn't been trained in HABIT showed a decline in day-to-day functioning, as measured by things like remembering to take medications and what to buy at the grocery store. Those who had gone through the Mayo program, however, remained about the same. “These folks are maintaining,” Chandler says.

So far more than 1,800 people — 900 patients and their partners — have gone through the HABIT program. Virginia Laken, 73, and her husband, Keith, were one of those couples. They traveled to Jacksonville from Winona, Minnesota, to go through the two-week HABIT training in 2015. It was, they say, one of the best decisions they could have made.

Going through the program, Virginia says, allowed her to better understand what she was dealing with. “And I understood that I could be at this stage for a long time, or not. That I could improve my ability to function on my own.” Beyond that, she says, “Keith became my partner in this: He owned it as much as I owned it."

For Keith, as for most care partners who participate in HABIT, the training and support groups also provided an opportunity for self-reflection. “One thing I learned that was so important was that Virginia can't help the changes she's going through. But I can change,” he says. “So rather than me being frustrated, I realized that I'm the person who is flexible in this situation.”

These days, when he sees that Virginia is frustrated, he takes a step back. Rather than trying to be the person who steps in to save the day, Keith says, “I ask the question: ‘What would you like me to do?’ Because if she wants to try and figure it out herself, she still owns the problem. If I try to fix it myself, I take that away from her."

Debbra Williams, whose husband Ernie was diagnosed with MCI at the end of 2015 at age 74, says that as soon as they got the diagnosis she began researching available treatments. “But it became clear to me pretty fast that there aren't a lot of options for someone who has MCI.” They got the last two seats in the Jacksonville clinic's February 2016 HABIT workshop.

Now Ernie never goes anywhere without his calendar and, his wife says, often reminds her of things they're supposed to be doing. In the intervening years, he's likely had some additional memory loss and degradation in things like word recall. “But because he's able to adapt and compensate for the memory loss by keeping up on his calendar, it makes it more difficult to tell whether his memory has gotten worse,” Williams says. “The HABIT program has, at least to some extent, given him the skills to compensate for that."

It's also allowed the couple to change how they approach their life together. “In 2016 there was something happening, and it was scary, and there were memory lapses we didn't understand, and neither of us knew who we'd even talk to about this,” Williams says. “Now, having more knowledge about the condition itself and having tools to deal with it, I feel there's an acceptance and a calmness and, really, almost a joy in the things we are still able to do, which are many. We are both trying to focus more on what we can still do and enjoy it, as opposed to what we've lost."

Early on, Chandler says, there was debate about even whether patients and their families should be informed of an MCI diagnosis. With the advent of HABIT and other programs like it, however, not doing so would be a missed opportunity. “A lot of people want to know what's going on or have noticed a change.” Putting a name to it and providing a workable, compensatory approach can make a world of difference in the lives of everyone involved.

"I want us to be able to reach as many people as possible,” she says. “We're training other centers to do it."

One of those centers is the Lou Ruvo Center in Las Vegas. “This is something we want to be able to provide as soon as possible,” says Justin Miller, who notes that he plans to have some aspects of HABIT up and running within six months.

"When some people get a diagnosis of MCI, they effectively stop living their lives. And that's the worst thing you can do. HABIT gives people a structured way to actively engage with their own care and well-being, where otherwise the landscape of interventions is relatively sparse,” he says. “If I can't do anything to treat, stop or reverse the disease course, at least I can help folks maintain a subjective sense of well-being, age as gracefully as they can, and maintain their quality of life.”

At 58, Angie may be the youngest person to go through the HABIT program. Which means that, potentially, she also has that many more years to benefit from the practices it instills. Even after just two weeks, Angie says she's noticed a big difference in her confidence. In that same time her mother shows a noticeable improvement in both mood and anxiety scores. “I want to be a better coach, and to help her have an improved quality of life,” Ann tells Chandler. “We're on our way.”