Technology Time: An Interview about Promoting independence and Self-Sufficiency for Those with Brain Injuries and Memory Issues

Blogger's Note About This Collaboratively-Written Post by Alice Bedard-Voorhees and Alice Brouhard: Many thanks to you, Alice Brouhard, for generously sharing your time to talk about work that demonstrates such potential for people with brain injuries and conditions affecting memory, for the review of the technical facts, and additions to this text.

Alice Brouhard, RN and Trainer researches applications and devices and teaches others to use technology to support their independence and self-management. That support comes in the form of IPad, Ipod Touch, smartphones and apps.

While key to learning, self-management is a major component for personal independence. But what happens when a brain injury or other condition impairs memory or other functions related to self-management and communication?

Alice’s expertise evolved from a very personal level. It began about twenty-five years ago when her fully normal five year old daughter was run into by an out-of-control skier on a Colorado ski slope, suffering diffuse brain injury that required multiple brain surgeries, a “cranioplasty” to repair her skull, and left her in a two month-long coma. These injuries rendered her legally blind, with left-side paralysis, and significant cognitive challenges.

As her daughter approached adulthood, Alice started to look to help her daughter be independent based on her expressed desire for independence and the wish to live on her own. In 2005, Alice learned about a customized computer and software, “Visions for Independent Living” with voice prompts delivered in “a terrible voice.”

Alice recalled: “We had to buy the totally customized software with timed voice reminders, and picture and audio based task prompting to guide her through her day.  This software required a dedicated computer (“Lucille”) just for it and an $800.00 touch screen monitor.  The total cost for all of this was around $5000.00., plus the cost of assistance with some of the initial setup. “

“The next software we bought (after we figured out how to use Kara’s own voice to record prompts on “Lucille”) was from a company called Ablelink Technologies.  Their system was called “Voyager.”  It provided the same sort of voice prompts and task prompting that “Visions” provided.   The cost for “Voyager” software was greater than $500.00. “

“We bought the “Voyager” software from Ablelink after Kara’s initial computer died in 2008.  “Visions” would not run on the Windows 7 computer we had to buy. “Voyager”/Ablelink was difficult to use initially but I had to learn it out of necessity as Kara was in her own house by then and LIVED by her computer to be successful and self-sufficient.”

Over time, Alice worked to design the strategy for a person affected by a brain tumor. AbleLink was loaded on a PDA, a 2008 purchase. They adapted the PDA for that person with reminders. Then The Ipod touch came out. They added an external mic to add the voice prompts, and also utilized Notes and Calendar a difference for this person who could read.

Then the iPad 1 came out in 2010, the year she bought an Ipod touch. Then the iPad 2 in 2011. With built-in mic and picture capabilities and I was hooked!!!  I bought my iPad that year!  That is when I would go into an Apple store and ask “how do you do this, how do you do that….?” 

Most recently, Alice customized the My Talk app to help a young man communicate the range of feelings he is feeling as the result of loss of eyesight and voice from a long-board accident. She has considered how this application could assist patients who are recovering from strokes and having language issues.

My Talk had the capacity to provide categories of feelings with deeper menus for expressing gradiations of those feelings. It allowed both visual and auditory responses.

My Talk also allowed the user to indicate  desired activities.

“I started looking at voice recorders for the person who had had the brain tumor….the IPad had a built in one, but I found easier ones to use. I started Googling Apps w/ Brain Injuries and started finding apps that “blew me out of the water.” Then I found a ninety-nine cent app that replaced the original timed-voice prompts. Then AbleLink came up with a fifty dollar app that replaced video/picture/audio prompts. Since then I’ve been exploring another that may replace it at little or now cost.”

During this ongoing conversation, she mentions a stream of apps, including one called “It’s Done,”—an app which notifies a caregiver when the supported individual has completed a task.

She researches apps for auditory notifications and text notifications, since user capacities vary.

The Touch and Learn—Emotions app can to help a person distinguish and communicate various emotions. For example, a person listens to the word "unhappy" and chooses the picture best showing that emotion.

She focuses on scheduling/memory, home safety, daily living skills and leisure skills in the apps that she identifies, demos, and uses. Her criteria are for apps that are low cost as possible, ease of set-up, and the ability to individualize it for the needs of the users. She says that in the last seven years, the cost of technologies and apps has decreased from that earlier $5000 price tag to as little as $500.

Aida Reminder allows the individual to create the audio reminders with his or her own voice.

Visual Impact Pro provides voice and text sequences to support accomplishment of day-to-day tasks.

Throughout this process, Alice has communicated with app developers and shares that developers have been very responsive and timely to such input. She also has learned to read the details before updating to understand capability of an app in an upgrade. (Aida Reminder with Voice is an example with the IOS6 upgrade.)

Now Alice is providing workshops to Individuals with disabilities, agencies serving those with disabilities and the aging, OT’s, PT’s and caretakers. Sessions are hands-on to teach others to research the apps and put them on Apple products –Iphone, IPad, ITouch.

A key message she brings to her work is that “we all have to “take time for technology” as it is ubiquitous. To learn to use it is will allow us to utilize it to our advantage, including the elderly and disabled who are often characterized as “too old or not capable of utilizing technology.”

Postscripts:

Alice’s daughter now lives in her own house with webcam technology and her memory supports on an IPad she purchased herself from her own small business endeavors. Alice’s observation is that her daughter has internalized some of the prompts, as evidenced by her starting tasks before the reminders activate.

This discussion has relevance given the number of war veterans returning from duty with signature brain-injuries: Stats for War-Related Brain Injury can be viewed at https://www.braintrauma.org/tbi-faqs/military-tbi/. It also has great relevance to statistical projections for the development of Alzheimers  and dementia in aging populations. Add to that potential for support for support of Asbergers, and the development of self-management of young adults in various educational situations.

For those of you who wish to contact Alice Brouhard more directly on this topic, she can be reached at taketimefortechnology@gmail.com