The role of cognitive aids in Traumatic Brain Injury rehabilitation: a single case study

Joseph HowertonDePaul University

Joseph@unit64.com

Jessica LoPrestiDePaul University

Jess_LoPresti@comcast.net

Carlyn PorterDePaul University

Carlyn.Porter@gmail.com

ABSTRACT In this paper, we discuss the impact of traumatic brain injury (TBI) on memory and evaluate how cognitive aids can assist in rehabilitation. For this single-subject case study, we recruited a participant from a comprehensive brain injury rehabilitation program. We examine how the TBI has affected the participant’s long-term and short-term memory and discuss the compensatory strategies and aids used for memory retrieval. In our research, we found the use of a memory book is a common cognitive aid for memory loss and view the development of an electronic memory book as a promising concept. Potential barriers to implementing such a device in rehabilitation include lack of funding and resources as well as lack of consistent support.

Author KeywordsBrain injury; assistive technology; cognitive aids; memory

ACM Classification KeywordsK.4.2. Computers and technology: Social Issues.

General TermsHuman Factors; Theory

INTRODUCTIONAccording to the CDC’s National Center for Injury Prevention and Control, approximately 1.7 million people sustain a traumatic brain injury in the United States each year. Of that 1.7 million, over 275,000 people are hospitalized and 1.36 million people are treated in the emergency room [11]. Traumatic Brain Injury (TBI) occurs when a sudden trauma damages one or more areas of the brain [12]. Leading causes of TBI are falls (35.2%), motor vehicle-traffic crashes (17.3%), struck by/against events (16.5%) and assaults (10%) [11]. Individuals who have sustained a moderate to severe TBI may be left with significant disabilities that impact their daily lives including problems with cognition, sensory processing, communication and behavior or mental health [12].

TBIs are associated with cognitive deficits; especially affecting memory associated with planning, organizing, problem solving, making judgments and abstract reasoning [12]. Often, individuals with TBI are not able to live independently due to cognitive deficits that make it difficult to perform everyday tasks such as cooking, remembering to take medications and attending to

personal hygiene [3]. In addition to the day-to-day challenges, they also encounter difficulty with more complex or long-term responsibilities, such as keeping appointments and performing multi-step tasks [6]. Decreased self-sufficiency and independence may lower self-esteem and is often accompanied by some degree of depression [4].

An individual that has experienced a significant TBI with associated permanent brain damage and memory loss, first, must regain their associations with the world around them with the assistance of their support network consisting of family members, nurses, doctors, therapists and other caregivers. TBI rehabilitation is considered most effective by using an interdisciplinary approach in close communication with a support network [8].

Related LiteratureRecent advances in technology, including the mainstream use of portable and handheld computers, have led to assistive devices for the rehabilitation of individuals with cognitive deficits caused by TBI [6]. Many technologies can potentially replace the use of more traditional, low-fidelity memory aids, such as calendars and sticky notes. The intervention of assistive devices, also known as cognitive prosthetics, into the lives of neurologically compromised individuals can provide cognitive support for multi-step task completion, as well as provide intellectual stimulation [4].

Numerous electronic aids, including paging systems, PDAs, mobile phones and personal computers, have been found to effectively compensate for memory problems for people with a traumatic brain injury. In a 2010 study, researchers Wilson, Emslie, Quirk, Evans and Watson, evaluated the use of a paging system for people with TBI and found that the paging system significantly reduced the everyday memory and planning problems typically associated with TBI as well as increased the level of independence [15].

Researchers Gentry, Wallace, Kvarfordt and Lynch examined the effectiveness of personal digital assistants (PDAs) as cognitive aids in a sample of 23 individuals with severe TBI [6]. All of the participants had prior use of a memory aid, mostly with appointment calendars and sticky notes. After a 3-6 session training period, the PDAs

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significantly improved the self-ratings of the performance of daily tasks as well as satisfaction with performance.

The efficacy of a PDA that contained scheduling software with audible and visible reminder cues was also evaluated in a study by researchers Kim, Burke, Dowds, Robinson-Boone and Park [9]. Nine out of twelve participants reported the PDA as being useful for daily reminders during the supervised trial and seven of the nine purchased a PDA after the trial ended. However, two of the participants did not purchase the device due to the cost, which demonstrated limited accessibility of such assistive devices for this population.

 In research conducted by Stapleton, Adams and Atterton, the use of a mobile phone as a memory aid was evaluated with a sample of five individuals with TBI, three of which were categorized as having ‘severe memory impairment’ and required 24-hour care [14]. Two participants revealed an increase in memory successes during the first intervention with the mobile phone. Although, for the three participants with severe memory impairment, the number of memory successes did not change with the use of the mobile phone reminder system, which suggested that the level of cognitive impairment and independence should be considered before implementing a similar device into rehabilitation.

When designing an assistive device, it is important to be aware of the functions and features desired by people with TBI. Hart, Buchhofer and Vaccaro evaluated consumer experiences, attitudes and preferences of portable electronic devices as memory and organizational aids in a consumer survey study [7]. Keeping track of money, remembering things people said and keeping track of things to do were identified as needing improvement by more than a quarter of the eighty-person sample. The device features rated as most important included the ability to ‘store a lot of information’, incorporating a ‘help line’ and having long-lasting and/or rechargeable batteries.

These studies provide promise for the use of portable electronic devices as supplemental memory aids for individuals with traumatic brain injury. However, it has been estimated that over one-third of assistive technology (AT) products are never fully integrated into a user’s lifestyle [13].

Considerations should be made to developing a system that is engaging, but is not overly cumbersome to the cognitive load of the individual. Cognitive impairments can make it challenging to learn and use assistive devices, which often have to be customized to best suit the user’s needs. Other challenges include, limited income to purchase the device, the time needed to learn how to use the technology and lack of consistent support from family members and other people in an individual’s network [7].

Finally, it is important to acknowledge that technology adoption is a multiple-stage process that also involves numerous individuals in a person’s caregiver network with varying expectations and goals regarding the assistive technology. Designers should aim to understand and consider these expectations in the creation of future assistive technologies [5].

Research Objective and QuestionsIn this exploratory case study, we sought a better understanding of the cognitive deficits that an individual was facing related to memory, as a result of a traumatic brain injury. Since each individual’s combination of cognitive abilities and deficits is virtually unique, single-subject case studies have been a major tradition in brain injury rehabilitation [2]. Specifically, we asked, “How can technology play a role in supporting greater self-sufficiency after the experience of TBI?” We addressed the deficits in cognitive processing and functioning as well as support for the completion of specific daily activities and subtasks. We also analyzed current compensatory strategies and the devices the participant currently uses as a memory aid. Finally, we included the family in the study to explore preferred features and functions of a memory device according to the participant and his/her family members.

METHODSThis exploratory, single case study took place at the New Focus program at Anixter Center, located in Chicago, Illinois. The New Focus Program provides intensive and comprehensive rehabilitation services for persons with traumatic or acquired brain injuries. Participants in the program have functional loss in three or more of the following areas: community use, vocational, home living, psychosocial or educational. The role of New Focus is to assist in the re-learning of skills through participation in a variety of individualized rehabilitation services, including therapy, skill building, and vocational and educational support [1].

Therapy programs include counseling (related to re-integration issues, post-traumatic stress disorder or combat stress), occupational therapy, physical therapy, speech therapy and creative arts therapy (art, music, dance and movement). The program provides cognitive retraining, vocational skill training, independent living, social and recreational skill building as well as case management services.

ParticipantThe participant was recruited from the New Focus Program. Keith, aged 35, (whose name has been changed to preserve confidentiality), sustained a severe traumatic brain injury due to an assault that took place over two years ago. In addition to the initial traumatic brain injury, he experienced a stroke as a result of not receiving emergency medical care until hours after the assault and remained comatose for approximately two months. For

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six weeks, Keith underwent intensive rehabilitation before being released to his mother’s care. Keith is the father of two children and resides with his parents and his youngest child. At the commencement of this study, he had been enrolled in the New Focus program for nine months.

Materials Observational and interview data was thoroughly documented on paper by at least one researcher. A computer with pre-loaded software was used in a couple of the memory activities.

We conducted interviews in a conversational format with the inclusion of several pre-determined questions regarding the participant’s history, the occurrence of the injury and the impact on memory as well as improvements noted throughout his rehabilitation.

Keith’s memory book, a large three-ring binder with tabbed inserts, was included in an interview as a way to evaluate his memory. The memory book held personal information, such as his name, his age, and the reason for being at New Focus, as well as numerous photos of immediate and extended family members. The book also included a calendar, a list of contact names, addresses and phone numbers, a journaling space and several memory evaluation exercises.

ProceduresInterviews, interactions and observations took place at New Focus over a three-week time period during May and June 2012. The first author volunteered for eight days gathering foundational knowledge about the program through casual interviews with staff members and participation in daily activities.

On eight separate occasions, we observed Keith participating in one of the program activities and documented any relevant observations. In six sessions lasting approximately thirty minutes, we engaged in a memory activity with Keith that included physical and digital memory-related games. For a couple of the computerized exercises, completion times were recorded but this data was not used as a defining measure for the purposes of this study. However, we made note of any behavioral observations, particularly any compensatory problem-solving methods employed by Keith.

We conducted three interviews, lasting in duration from 30 to 60 minutes, with Keith’s mother. We asked questions regarding demographics, the cause and nature of Keith’s injury, the affect of the TBI on his memory, social interaction and her role as the primary caregiver in Keith’s daily life and rehabilitation.

In the thirty-minute interview conducted with Keith and his mother, we addressed topics related to the cause of injury, family structure, daily activities at New Focus and at home as well as long-/short-term events and goals. Most of these questions surrounded material found in his

memory book. We pointed to various photos in the book and asked Keith to identify the person(s). Any accompanying written descriptions were covered in order to avoid leading him to the correct answer. We asked Keith the same series of questions at the beginning of the interview and at the end of the conversation to see if there was any variation in his answers. Interview data was documented in our notes.

FINDINGSDue to a severe traumatic injury to his left temporal lobe and left hemisphere of his brain, Keith experiences significant memory loss, both in his short-term and long-term memory capacities. In the New Focus program, he engages in a variety of memory and cognition building exercises, games, and other memory improvement activities. According to his therapists and his family he has experienced “massive improvements” in all of his memory capacities since he has been in the program.

Despite this noted improvement, Keith has a long way to go in the rehabilitation of his short and long-term memory recall and retention, as well as his cognitive and emotional capacities. For instance, during our interviews and interactions with Keith, we found that he is unaware of his true age. He thinks he is 15 instead of 35 years old. Sometimes, he does not remember that he is the father of two children. When we pointed to a picture of his youngest child in his memory book, he was unable to tell us her identity, even though they live together in his parents’ home. However, he can easily recall many people and events from his childhood.

Through our observations and interactions with Keith and through our discussions with his mother and New Focus staff members, we discovered that his working memory is considered to be quite good and is progressively improving. He demonstrates attention and focus for task-related activities. According to his support network, he is also showing increased initiative in the program and at home.

Compensatory Strategies and Aids for Memory RetrievalSometimes during conversation, Keith demonstrates a memory disturbance called confabulation where he fills in holes in his memory with an untruth without the intent to deceive. This is also known as “honest lying” [10] Although there is a possibility that Keith may have some conscious understanding of the gaps in his memory and may feel compelled to provide an answer even if he is unsure of its accuracy, this would require further observation and evaluation. At this point, we assume these are unconscious responses and not a compensatory mechanism.

Early on in the interview process, we found that the use of a memory book is a common cognitive aid for people that are suffering from memory loss as a result of a traumatic

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brain injury. Keith has two memory books: one at home and another at New Focus. His mother and the New Focus staff members will use the books to work on memory exercises with Keith. It is important to note that at this stage of his rehabilitation, Keith needs the assistance of others to implement this tool into his rehabilitation.

Keith also uses electronic memory aids at New Focus including computer game software, such as Memory blocks, Memory Match, and Memory Matrix, as well as online games including Boxes, Memory II, Memory III from Sheppard Software and Lumosity. Research studies by Cole and Dehdashti suggest that the ideal time for incorporating an electronic memory aid into TBI rehabilitation is after completion of the initial rehabilitative therapy stage [4], which usually occurs over a span of nine to twelve months. Implementing cognitive aids into subsequent rehabilitation can address specific deficiencies that the primary therapy was not able to address.

Depression and Other Emotional DistressWe believe it is possible that Keith may be experiencing some level of depression due to his current state. According to members of his support network, Keith intermittently expresses feelings of frustration, irritation, anger and despair. In these moments, he is remembering things with more clarity and then appears to emotionally shut down, and withdraw from others. His mother shared a story with us about when she found Keith sitting alone in his bedroom in the dark. When she asked him what was wrong, he replied, “Maybe I should go and live with someone like me, someone who doesn’t remember stuff.” At these times, he apparently is more aware of his condition and perceives himself as different and isolated from others. He also acknowledges how challenging this is for his mother and appreciates her hard work in caring for is needs, although he says he does not want to be “babied” anymore.

Still, there is a glimmer of hope in these moments of increased awareness. We see these instances as positive signs of progress and are interested in monitoring this with the assistance of his support network.

DISCUSSIONWhen a person has severe memory impairment resulting from a TBI, as in Keith’s case, it dramatically decreases their ability to authentically communicate and independently function within society, which may increase feelings of isolation, depression and anxiety. Self-identity must be restored and built upon before a person can become socially integrated within the complex realms of the external world.

Through our participation in this research study, we not only learned about the daily obstacles that Keith faces but also of the significance of his support network. In our interviews with Keith’s mother, it became apparent

exactly how essential her role is in Keith’s rehabilitation. Often times, this role comes with intense challenges and may exact an emotional toll on the caregiver.

Limitations of the Current StudyWe acknowledge that the limited three-week timeframe was not long enough to conduct a thorough research study in the area of brain injury and memory loss. Further discovery and exploration is necessary in order to confirm or refute our initial assumptions proposed in this paper.

In addition, we are aware that a single case study cannot be generalized to the larger TBI population, especially because of the unique impact a brain injury has on each individual. However, we can apply what we have learned in this study to our future work with this population.

Design Implications for Assistive TechnologiesIn our exploration, we have discovered that deficiencies in memory impact additional perceptual and cognitive processes, such as attention, concentration and focalization. Further understanding of how TBIs adversely affect these processes can assist in defining functions and features for an effective assistive technology.

We were inspired by the use of a memory book in Keith’s rehabilitation and we see the value of developing a memory book application for a tablet or smartphone. Possible functions and features could include a calendar with audio and visual reminders, a journal, daily progress logs as well as memory and reading comprehension exercises. However, because the effects of a TBI are unique to each individual, it presents a challenge in designing universal features for an electronic cognitive aid. Therefore, features should be customizable depending on the severity of memory loss.

Currently, we are still in the exploratory and discovery phase, gathering information that will drive our design requirements. It is fundamental to develop our understanding of the different types of memory and how they relate to each other. For instance, how can we design an application that will extend the capacity of working memory to achieving (longer) short-term goals? What types of features would be helpful in improving long-term memory? How do we develop a system that can be used by the person with a TBI with minimal support? Once we are able to answer those questions, we can then move on to the next phase of iterative design.

CONCLUSIONUnfortunately, the TBI community remains one of the most underserved in our society, notably in Illinois where organizations like New Focus struggle to attain adequate funding. This makes advocacy for the TBI community more challenging, especially in designing technology that individuals and programs can afford and implement into rehabilitation. We assume that funding of these programs will become more difficult in the near future, and we

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foresee a different model emerging that is not solely dependent on government resources. Advocacy through active involvement and contribution to these efforts, help to better serve organizations like New Focus, their clients and the larger TBI community.

ACKNOWLEDGMENTSWe thank Cynthia Putnam and Amy Laboy for assisting us in finding a participant for our research as well as Lisa Goldman, Yu-Hung-Lu, Arthur Riepenhoff and Tim Donahoe for supporting us at New Focus. Most of all, we thank Keith for participating in our research and his mother for her willingness to share her experiences as a caregiver and inspiring us to pursue further research on this topic.

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retrieved on June 5, 2012 from http://www.anixter.org/index.php?option=com_k2&view=item&layout=item&id=159&Itemid=222

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