Having a Planner Versus Being Trained on the Planner
“Where can I buy the calendar you talk about in the HABIT Program?”
It is a common question we are asked by both patients and other practitioners who want to provide it to their patients. First, we love that people can see the potential benefit of our planner system! However, we purposefully have not sold them for 15 years. There is good reason for this: we have research to show that just having OUR calendar is not helpful but being trained in the way to use our calendar is.
This is one of the earliest studies we put together: We randomized 20 patients and their partners to get our calendars and training, and the other 20 couples were given our calendar and told we wanted to see how well they could do it on their own. It was (and is) common practice for neurologists or neuropsychologists to recommend someone start using a calendar or taking notes to help with their memory in MCI and expecting them to do it themselves. The unanswered question was, can couples do this on their own or do they need training?
So, we gave everyone in that study our calendar/planner (the Memory Support System; MSS) and had them go home and start using them. When they came back 1-2 weeks later, what we saw was that 45% of those assigned to use it their own were able to demonstrate that they were using it effectively, while next to none of those in the training group were. It seemed that motivation to show us how well they could do it on their own was effective, and the training group just waited to be trained.
But what happened as time went on? We kept checking back on the self-training group to see how well it was going, by 2 months out, almost none of them were continuing to use the MSS. In contrast, almost all of those (94 %) trained became good at using the MSS, and most (67 %) continued to use it. Those in the training group had better self-efficacy (confidence in taking care of things despite their memory loss) and daily functioning by the training end. Those who self-trained did not.
Fast forward to 6-12 months. Care partners of those who trained reported less caregiver burden and better mood than the self-training group. Bottom line - the training, not the calendar itself, seemed to make the difference.
But did anyone self-train and have improved outcome? Yes, there was one very determined couple who did it on their own and had improved outcomes. 1 out of 20.
With so little in the way of effective therapies on the market, is something better than nothing? Meaning, if someone cannot get the best treatment (getting the planner and the training), should they at least be given the opportunity to try on their own (be like that 1 out of 20)? It's a great question.
The more HABIT has grown, and the more patients and family members we reach, the more we want to reach. Thus, we have decided to go ahead and are in the process of getting the MSS commercially available.
The caveat here is that just having the MSS calendar system often isn’t enough. Routinely, patients and particularly care partners are shocked at how difficult it is for the individual with MCI to learn the MSS, even with the help of the trainer. What may start on Day 1 as "I can't believe we travelled all the way from Denver to learn to use a day planner" morphs into "I can't believe how difficult it is for them to learn this" by Day 3, and joy into how much the new system is helping by Day 10. We also have a lot of tips and tricks we add in beyond what you may think as traditional calendaring.
Could we publish a how-to book or make instructional videos on the calendar? Perhaps, but it isn't as easy as it sounds, as the training process is a cognitive rehabilitation therapy, with lots of adaptation and modification as we go based on the needs of each and every individual patient and their partner. Not all would be captured in pre-made material. Can we train more providers to offer this training? Absolutely, and we are trying to do just that.
Thank you to all of those who have worked so hard in your Planners/Calendars with us. I'd love for you to post about your experiences!