Aging With Brain Injury Successful Aging of Individuals with Brain Injury The Graying of Brain Injury: An Overview Diagnostic Issues In TBI In The Elderly Changing the Approach to Falls in TBI Aging with Traumatic Brain Injury: Long Term Outcomes Professional Viewpoints: Commentary
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Tree of Life provides state of the art, community-based neurorehabilitation services for persons with acquired brain injury including those with chronic pain diagnoses. We offer supervised supported living as well as transitional rehabilitation services. The Habit Retraining Model serves as the core neurobehavioral intervention with functional task analyses as the primary retraining method. Assessment and treatment are individualized using an integrated biopsychosocial model. Tree of Life strives for unsurpassed commitment to improving functional abilities and quality of life for even the most challenging clients.
Key Elements of Our Program Include: • On-site medical supervision by internationally respected, brain injury specialist, Nathan D. Zasler, M.D. • Neuropsychological and behavioral management supervised by Michael F. Martelli, Ph.D. • Case management services • Vocational and avocational skill development • Community re-entry training • Therapy services including occupational, physical, speech and nutritional therapy • Community networking with multiple client support services The goal of Tree of Life is to build upon the strengths of clients through compassion, innovation and expertise. For more information, please contact us at 1-888-886-5462 or by e-mail at firstname.lastname@example.org.
Living Assistance for Persons with Acquired Brain Injury Tree of Life, L.L.C. 10120 West Broad Street • Suite H • Glen Allen, VA 23060
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“The greatest pleasure in life is doing what people say you cannot do.” Walter Bagehot
6 Chairman’s Message 8 Guest Editor’s Message 9 Editor-in-chief’s Message 33 Conferences 35 Professional Appointments
north american brain injury society
vol. 2 issue 2, 2005
10 Successful Aging of Individuals with Brain Injury
by Paul F. Aravich, PhD and Anne McDonnell, OTR/L
16 The Graying of Brain Injury: An Overview
by Tina M. Trudel, PhD, Thomas Felicetti, PhD and Michael P. Mozzoni PhD
22 Diagnostic Issues In TBI In The Elderly
by Steven R. Flanagan, MD; Wayne A. Gordon, PhD and Mary R. Hibbard, PhD
26 Changing the Approach to Falls in TBI
by Helen Carmine, MSN, CRRN, CRNP; Mary Pat Murphy, MSN, CRRN; Cheryl Ambush-Mansfield, MBA, Keith Robinson MD
30 Aging with Traumatic Brain Injury: Long Term Outcomes by Angela Colantonio, PhD; Graham Ratcliff, DPhil; Susan Chase, MA and Lee Vernich, MSc
chairman Robert D. Voogt, PhD treasurer Bruce H. Stern, Esq. family liason Julian MacQueen executive vice president Michael P. Pietrzak, MD, FACEP executive director/administration Margaret J. Roberts executive director/operations J. Charles Haynes, JD communications manager Brandy Buzinski marketing manager Joyce Parker graphic designer Nikolai Alexeev administrative assistant Benjamin Morgan administrative assistant Bonnie Haynes
brain injury professional publisher Charles W. Haynes publisher J. Charles Haynes, JD founding editor Donald G. Stein, PhD editor in chief Nathan Zasler, MD design and layout Nikolai Alexeev advertising sales Joyce Parker
editorial inquiries Managing Editor Brain Injury Professional PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Fax 713.526.7787 Website: www.nabis.org
advertising inquiries Joyce Parker Brain Injury Professional HDI Publishers PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Fax 713.526.7787
national office North American Brain Injury Society PO Box 1804 Alexandria, VA 22313 Tel 703.960.6500 Fax 703.960.6603 Website: www.nabis.org
34 Professional Viewpoints: Commentary
by Candace Gustafson, RN, CBIS-CE; Marcia Cooper and Marvel Vena of the Fairhaven Institute
Brain Injury Professional is a quarterly publication published jointly by the North American Brain Injury Society and HDI Publishers. © 2005 NABIS/HDI Publishers. All rights reserved. No part of this publication may be reproduced in whole or in part in any way without the written permission from the publisher. For reprint requests, please contact, Managing Editor, Brain Injury Professional, PO Box 131401, Houston, TX 772191400, Tel 713.526.6900, Fax 713.526.7787, e-mail email@example.com
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As I reflect on the two years since we established NABIS in 2003, I am indeed delighted by how far we have come in such a relatively short time. The response to our Society has been overwhelmingly positive and the organization has attracted members from all over North America. What I have found especially encouraging is the enthusiasm of these professionals and their desire to give brain injury a true professional identity. From the beginning, the NABIS mission has been to provide a platform for professional exchange and communication. To that end, we launched the publication you are reading now, Brain Injury Professional, the largest professional circulation publication on the subject of brain injury. Controversial at times, but always intriguing, there is no question that BIP is the most talked about publication in our field. We were also honored when Congressman William Pascrell of New Jersey addressed our strategic planning meeting in May, 2004. This year, we added our first affiliate, the Texas Brain Injury Society, under the direction of David Seaton. NABIS has also reached out to form partnerships with other organizations and initiatives like Lids On Kids, Life in Motion and recently contributed to CDC’s new toolkit Heads Up: Concussion in High School Sports, and the CDC’s new definition of ABI to include Shock Trauma. Today, I am pleased to announce the logical next step in our evolution, a comprehensive conference for all professionals involved in the care and treatment of persons with brain injury. This conference, held in Amelia Island, Florida on September 22nd –24, entitled Brain Injury: New Science, Best Practices and Future Innovations will bring together some of the most established names in brain injury plus introduce to the field some emerging profes-
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sionals who are making extraordinary breakthroughs in both rehabilitation and science. Day one of the conference will feature plenary sessions from outstanding professionals in the field like William Singer, MD, Roberta DePompei, MD, Debra Brauling-McMorrow, PhD, Ronald Hays, PhD, as well as Jonathan Silver, MD, co-editor of the Brain Injury Textbook, and Jean Langolis, ScD, the senior epidemiologist at the CDC. In day two, attendees will be able to attend breakout sessions on six individual tracks including Community Living, Sports Brain Injuries, Pediatric Issues, Rehabilitation and Therapy, Innovations in Science and Legal Issues. I invite you to visit our website www.nabis.org and review the full list of speakers and topics – I think you will agree that this conference will be the most comprehensive, in-depth and worth-while brain injury event to take place in many, many years. On day three, the breakout sessions will continue, culminating with a final plenary session on Saturday afternoon when Mark Ashley, ScD, recently named Chairman of the Brain Injury Association of America will present on the future trends in brain injury services. Throughout the event of course, there will be the opportunity to visit with exhibitors, meet with old friends and connect with new ones. On behalf of the Society, I encourage you to register for this important event. I look forward to seeing you in Florida!
Robert D. Voogt, PhD Chairman, North American Brain Injury Society
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guest editor’s message
It is a privilege and honor to serve as guest editor for this special issue on aging with brain injury. With the progress in trauma care and medicine in general, there has been tremendous improvement in the survival rates and outcome from TBI. These improvements accelerated during the Vietnam era to present day, resulting in a growing population of individuals who have survived (and thrived) following brain injuries that were fatal years before. Along with this group of survivors is the growing number of individuals recognized and diagnosed to have more moderate and mild brain injuries, and living with such injuries for decades. In my own experience, I have seen our practices and programs evolve in an attempt to meet the needs of this growing population. Given the millions of people now aging with brain injuries, the paucity of published research is rather remarkable. Studies are in process, but many are limited due to reliance on self-report surveys, convenience samples, multiple treatments and levels of injury, tracking/follow-up problems, high drop out rates and the myriad elements that face those willing to attempt longitudinal and retro/prospective research. Seven years ago at a meeting of the American Congress of Rehabilitation Medicine’s (ACRM) Brain Injury Long Term Issues Task Force, Marilyn Spivack and many other survivors and professionals in the field of TBI raised the question, “When are you going to focus on the aging issue?” Hopefully this volume will provide a cross section of articles that respond to that call. While many challenges are faced by individual aging postTBI, all is not doom and gloom. Therefore, we lead off this issue with an in depth article by Dr. Paul Aravich and Anne McDonnell, OTR/L reviewing the research on those factors that may contribute to successful aging. These factors are not only
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relevant to persons with TBI, but also benefit anyone looking to maximize their odds of enjoying retirement. Next, members of the ACRM Brain Injury Long Term Issues Task Force (Drs. Trudel, Felicetti and Mozzoni) offer an overview of the ‘graying’ of brain injury. Examining past and present research and the current ACRM survey, this article touches on findings related to vocational outcome, psychosocial issues, health and the complexities of the issue of dementia. Also addressing complex issues is the article by Drs. Flanagan, Gordon and Hibbard that examines the diagnosis of TBI among the elderly, and assessment of the elderly persons with TBI. Falls are one of the major causes of death and disability among all elderly. Helen Carmine, Mary Pat Murphy, Cheryl Ambush-Mansfield and Dr. Keith Robinson outline pragmatic approaches to fall risk assessment and fall reduction for postacute settings serving individuals who are aging with TBI. Some time ago I had the opportunity to meet Dr. Angela Colantonio of Toronto, Ontario, Canada, who shares an interest in the issue of aging with TBI. She and Dr. Graham Ratcliff, Susan Chase and Lee Vernich have contributed an article based on their research following a cohort of individuals with TBI many years after rehabilitation. This article provides much needed insight and data related to long-term outcome. This special issue on aging then closes with Candace Gustafson, Marcia Cooper and Marvel Vena providing another viewpoint on aging with brain injury, as individuals who have lived this experience and have learned from others who are in the midst of the post-TBI journey. Lastly, I want to extend thanks and acknowledgement to the late Dr. David Strauss. David was a friend and colleague involved from the outset in the ACRM work on aging with brain injury. He is a source of inspiration to all of us.
Tina M. Trudel, PhD, CBIT Executive Director, Lakeview NeuroRehabilitation Center Vice-President of Clinical Services, Lakeview Healthcare System Adjunct Asst. Professor of Psychiatry, Dartmouth Medical School
I am happy to have Dr. Tina Trudel of Lakeview Rehabilitation as guest editor of this issue of the Brain Injury Professional on "Aging with TBI." For those of us who have been in the field for any length of time, experience has demonstrated that aging with a brain injury can be associated with a number of long term consequences, some of which are positive and some of which are, in fact, negative. Aging, in general, is both an art and a science. There is still much that we do not know about the consequences of normal aging, never mind aging in the presence of an acquired brain injury. Issues cross numerous lines of theory and debate, as related to consequences of neural injury on the normal aging process, and the risk for such things as senile dementia of the Alzheimer's type, as well as, Parkinson's. There are also clearly effects of physical disability following acquired brain injury and the consequences of how those physical disabilities are “impacted” by aging. For example, a person with chronic hemiparesis or gait ataxia may experience resultant body asymmetries that result in aberrant biomechanical joint forces that produce early arthritic/degenerative changes. Additionally, body asymmetries that may occur following more severe physical disability after TBI may result in cardiopulmonary system compromise with such complications as restrictive lung disease. Psychosocial aspects of aging with TBI must also be considered in regards to relationship issues, vocational reentry, as well as avocational participation, among many other issues. The aforementioned are all issues that we as clinicians must keep in mind when assessing people with acquired brain injury as they age and differentiating reported or observed difficulties from the normal effects of aging. Dr. Trudel has put together a unique array of six different articles dealing with aging and brain injury that deal with issues across the clinical spectrum. What is unique about this is not just the topics covered but the diversity of the contributors solicited to write the articles for this issue. I want to personally thank Dr. Trudel for her time and contributions to producing yet another successful issue of the Brain Injury Professional.
I also want to take this opportunity to mention that there has been a relative flurry of commentary regarding some of the recent publications in the the Brain Injury Professional. I would note that both the publisher and I, as chief editor, received several comments going in rather opposite directions regarding an article in the "Forensic Neuropsychology: Controversy After All These Years" issue (Volume 1, Issue 2), as well as, a letter to the editor in response to the article, the latter published in a subsequent issue (Volume 2, Issue 2) on “Brain Injury and Community Based Issues”. Both the publisher and I feel that such controversy is a positive phenomena and may simply reflect the fact that, at least on certain topics, there remains debate among professionals and a lack of consensus. We believe that part of the mission of the Brain Injury Professional is to allow different view points to be expressed and to facilitate opportunities for professionals of all disciplines who are involved with brain injury to provide commentary and feedback, as well as, constructive criticism. It is only through the process of "peer review" and open debate that there will be any evolution as far as thought processes on many of these controversial issues. The Brain Injury Professional remains committed to allowing professionals a forum for such debate. We would hope that those persons that may have been "insulted" by anyone's opinion or commentary will try to take a step back and understand such debate is in fact one of the means by which we feel this publication can make a difference in the practice of brain injury care. We would also challenge these individuals to not just complain about opinions expressed in BIP but step forward and share their views with fellow BIP readers in the context of editorial letter submissions. We look forward to continuing to provide readers with upto-date, clinically relevant information to assist in the care and management of persons with acquired brain injury. We will also commit to continuing to facilitate an open forum for communication of dissenting opinions. Should readers have proposals for future thematic issues of the Brain Injury Professional, I encourage you to submit them to my attention through HDI Publishers. With best regards, Nathan D. Zasler, MD, FAADEP, FAAPM&R, DAAPM, CIME Editor-in-Chief, Brain Injury Professional Chairperson, International Brain Injury Association CEO & Medical Director, Concussion Care Centre of Virginia CEO & Medical Director, Tree of Life
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Successful Aging of Individuals with Brain Injury
by Paul F. Aravich, Ph.D. and Anne McDonnell, OTR/L Successful aging is a goal for all creatures great and small. This is true for the lowly mayfly living one day and for the inspiring — if not scrawny — bristlecone pine tree living 4000 years. However, successful aging in people requires more than longevity: it requires the maintenance of physical, cognitive and social function (Rowe and Kahn 1997). The survivors of traumatic brain injury (TBI) are living longer than ever before. This article will distinguish successful aging from senescence. It will then identify 10 ways to promote successful aging in long-term survivors so that — within the constraints of their injuries — physical, cognitive and social function can be maintained. The number of older people has increased dramatically throughout most of the world. This has been accompanied by an expansion in the number of people aging with disabilities in general (Klingbeil et al., 2004), and with an increase in the number of people aging with TBI in particular. Various factors have contributed to this phenomenon, not least of which is a declining overall TBI death rate (Adekoya et al., 2002). Declining death rates have been accompanied by advances in long-term medical care, rehabilitation and social support making the prospects for successful aging an ever increasing reality for survivors. More information on the epidemiology of this aging phenomenon, the primary causes of death in aging survivors, and interventions that go beyond typical TBI services is desperately needed to maximize successful aging in this population. Only a few studies have looked at mortality rates and the primary causes of death in long-term TBI survivors (see Trudel et al., current issue). Mortality rates have been estimated to be nearly four times greater than those for people without TBI (Baguley et al., 2000). Even mild TBI is associated with a small but statistically significant reduction in long-term survival (Brown et al., 2004). Overall life expectancy may be reduced by 7 years in survivors, who are twice as likely to die as age, gender and ethnically matched controls; the best predictors of premature death were older age, lack of employment at the time of injury, and disability at the time of rehabilitation discharge (Harrison-Felix et al., 2004). The limited data available suggest that long-term survivors have increased death rates from circulatory and respiratory diseases, as well as 10
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from seizures and choking (Shavelle et al., 2001). Last but not least, TBI increases the risk of Alzheimer’s disease (Lye and Shores, 2000). Compared to seizures and choking, much less attention has focused on cardiovascular, respiratory and brain fitness in long-term survivors, despite the importance of each for successful aging. It follows that the promotion of successful aging in long-term survivors requires attention to factors that go beyond the brain injury itself. The promotion of successful aging in survivors distinguishes aging from senescence. Many people fear old age. Contrary to popular belief, aging is not a disease. In fact, it can be argued that aging starts at conception and then continues across various developmental life stages. Instead of aging, we fear senescence: a progressive loss in the ability to maintain fitness and defend against death (Williams, 1999). It has been argued that senescence is a relatively recent evolutionary phenomenon and that there are numerous “negligible senescers,” including oysters and insect queens (Finch and Austad, 2001). The causes of senescence are both biological and environmental. Biological factors include genetic predispositions, the lack of cell division via chromosomal telomere shortening, the loss of growth factors, programmed cell death known as apoptosis, endocrine changes, and free radical toxicity (see Finch and Austad, 2001). But nurture as well as nature determines survival: identical twin studies indicate that only 35% of the variance in human survival is genetically determined (Finch and Tanzi,1997). Hence, environmental and lifestyle factors play a more important role in successful aging than genetic factors. A good example is the queen of an ant colony: as a negligible senescer she does not show a progressive decline with age in most biological functions. Her only flaw is that she runs out of eggs, at which time extrinsic factors —namely, her sons — kill her (see Finch and Austad, 2001). Another example is the oysters that once dominated the Chesapeake Bay. As negligible senescers they are literally fountains of youth. Yet, this population was decimated by extrinsic factors, including over fishing and pollution (see Finch and Austad, 2001). More research is needed to identify the modifiable environmental and lifestyle factors that are unique to long-term survivors. This requires a leap beyond the simple
biology of brain injury and a greater understanding of the biopsychosocial model of successful aging. As greater longevity is sought for survivors, it is important to avoid the Tithonus error: quantity rather than the quality of life (Bunk, 2002; Williams, 1999). Tithonus was the mere-mortal lover of the Greek god of the dawn, Eos (Aurora in Roman mythology). At her request, Zeus granted Tithonus immortality. Since Eos did not ask for eternal youthfulness or for protection against senescence, Tithonus became progressively more senescent. Eventually, Eos became bored and turned him into a cicada to entertain her with his summer chirpings. Clearly, the goal for successful aging in survivors is to compress morbidity, not to expand it. Compression of morbidity is exemplified by the Pacific salmon. It lives well for several years in the ocean until its relatively brief spawning period, at which time it undergoes rapid senescence and a highly compressed period of morbidity (Patnaik et al., 1994). What is the impact of TBI on senescence? As we get older there is a senescence-related decline in so-called fluid intelligence (processing speed and memory span) but an increase in crystallized intelligence (general information and vocabulary). Cognitive deficits are one of the most disabling features of TBI. Does TBI accelerate the senescencerelated decline in fluid intelligence as argued by some authorities, or does it simply add to this decline? In other words, does TBI accelerate brain senescence or is it an independent pathology superimposed upon senescence? Alzheimer’s disease can clarify this issue: it is now accepted that it does not accelerate brain senescence. Instead, it is a pathology superimposed upon it. It therefore follows that TBI does not accelerate brain senescence but is instead superimposed upon it. The relationship of TBI to Alzheimer’s disease has another implication. Greater recognition that an acquired brain injury is a predisposing factor for a neurodegenerative disorder will allow the lessons learned from one pathology to apply to the other. An example is the Alzheimer Association’s current campaign to potentially protect against Alzheimer’s disease (Alzheimer Association, 2004). It is clear that Alzheimer’s disease and TBI share a number of biological features: each is related to inflammation, excitotoxicity, free radicals, the apolipoprotein E4 cholesterol transport protein and excessive alcohol intake (see Kerr this issue; Lye and Shores, 2000; Mukamal et al., 2003). It is also clear that each is related to mental health issues such as depression, social isolation, caregiver stress, respite care, Medicaid waivers and the need for more dedicated neurobehavioral units. And, certain treatments that are beneficial in one group show potential benefits in the other group (e.g., Whelan et al., 2000). Despite these similarities, brain injury, Alzheimer’s disease, and mental illness advocacy groups travel in largely parallel, non-intersecting universes, often competing against each other. The following 10 rules are designed to promote successful aging in TBI survivors. They build upon the Alzheimer Association’s effort to potentially avoid Alzheimer’s disease (Alzheimer’s Association, 2004) and have two purposes. The first is to propose the benefits of a multidisciplinary approach for the promotion of successful aging in TBI survivors. Currently, TBI is a chronic condition that is often associated with increasing morbidity and the eventual requirement for long-term care. Innovative approaches are needed to more effectively deal with this issue. The second purpose of these rules is to challenge professionals in brain injury, Alzheimer’s disease and mental illness to get beyond the respective pathologies they deal with on a daily basis. Rule 1. Take Care of the Survivor’s Heart. It is now clear that several cardiovascular risk factors are also Alzheimer’s disease risk factors, including diabetes, hypertension, and an adverse lipid profile (Alzheimer Association, 2004). Another cardiovascular disease risk factor is obesity. Since TBI survivors have an already increased risk for Alzheimer’s disease, survivors with diabetes, hypertension or an adverse lipid profile compound that risk at the same time they increase their risk for heart disease and stroke. Clearly, the promotion of successful aging in TBI survivors requires a focus that goes beyond the brain and includes the early diagnosis and treatment of cardiovascular risk factors. Such preventative care is difficult when complicated by transportation, economic and cognitive constraints, but is every bit as important — if not more so — for survivors as it is in other populations. If the U.S. Health Resources and Services Administration’s goal of “100% access to health care and 0 health disparities” is to be achieved, a more aggressive focus on aging people with disabilities must occur since they routinely face barriers to health care and bear a disproportionate burden of illness.
Rule 2. Exercise the Survivor’s Body. Successful aging is importantly related to lifestyle factors such as exercise (Surgeon General’s Report, 1996). There is little doubt that physical fitness protects against the three leading causes of death in North America: heart disease, cancer and stroke. It is also clear that moderate exercise promotes respiratory fitness and, by improving balance (Dault and Dugas, 2002), can reduce the risks of falls in survivors (see Murphy et al., current issue). Moderate exercise also elevates mood, improves cognitive scores even in people with early Alzheimer’s disease and, at least in adult rats, increases the number of neurons in an area of the brain linked to learning and memory and frequently injured by TBI, viz., the hippocampal formation (see e.g. Grealy et al., 1999; Rolland et al., 2000). The benefits of moderate exercise on cognitive function (Grealy et al., 1999) and physical fitness (Driver et al., 2004) in survivors have been documented. Regular movement also reduces the risk of deep venous thrombus (DVT) formation and premature death from pulmonary thromboembolism. The ability of survivors to exercise is of course impacted by physical, cognitive and/or emotional limitations. Yet, within these constraints, greater attention must focus on the fact that exercise is not just for rehabilitation; it is also for the promotion of successful aging. Innovative ways to overcome the limitations of TBI include combining exercise with the virtual reality of traveling through an exotic environment in survivors with attention deficits (Grealy et al., 1999) and the use of rhythmic music patterns (Hurt et al., 1998). Rule 3. Exercise the Survivor’s Brain. While there is considerable interest in the promotion of physical fitness, less attention has been paid to what is known as “brain fitness.” Neuroscientists say, “If you don’t use it you lose it,” or, “Neurons that fire together wire together.” There is good evidence that cognitively stimulating activities protect against Alzheimer’s disease (Alzheimer’s Association, 2004). This is a particularly important issue for survivors at increased risk for Alzheimer’s. Hence, life-long, cognitively stimulating activities go beyond the rehabilitation of survivors because they also maximize brain fitness and promote successful brain aging. This is a problem in stereotypical institutional settings, in socially isolated and economically disadvantaged environments, and in survivors with significant cognitive impairments. It is also an important problem for overburdened caregivers. From this perspective it can be argued that neuroscience research supports club houses, specialized recreational camps, job training, education programs, better housing, and respite care programs to promote brain fitness in survivors and caregivers alike. More innovative strategies building on, e.g., the principles of music therapy (White, 2001), art therapy (Rentz, 2002), dance therapy (Pratt, 2004), virtual reality therapy (Lee et al., 2003), and theater arts (Noice et al., 2004) are clearly needed to exercise the brains of survivors and caregivers. Rule 4. Feed the Survivor’s Brain. Nutrition is critically related to successful aging. Despite this, a substantial number of survivors routinely consume poor diets. The 2005 U.S. Dietary Guidelines (Dietary Guidelines, 2005) clearly state that sugar and highly refined carbohydrate (e.g., white flour) should be avoided along with the consumption of saturated-fatty acids and of the trans-fatty acids found in many snacks, pastries and candy bars. Each of these nutrients adversely affects the heart. In some but not all studies, saturated- and trans-fatty acid consumption increased the risk of Alzheimer’s disease (Morris et al., 2003). And, in rats, high-fat/highsucrose diets worsen the cognitive effects of experimental brain injury (Wu et al., 2003). The American Dietetic Association is dedicated to improving nutrition and has a variety of validated intervention strategies. More partnerships are needed with registered dieticians and other nutrition experts to address the unique needs of survivors for better nutrition. The 2005 U.S. Dietary Guidelines (Dietary Guidelines, 2005) also recommend consuming a diet high in whole grains (3 or more ounceequivalents per day), vegetables (the equivalent of 2.5 cups per day) and fruits (the equivalent of 2 cups per day). Each of these is rich in essential nutrients and antioxidant compounds and linked to reduced risks of cardiovascular disease, cancer and stroke. Good nutrition is also essential for the cognitive function. For example, B-vitamin deficiencies, dehydration, and protein-energy malnutrition impair cognition. And, good nutrition is important for immunity, which can be compromised by protein-energy malnutrition and deficiencies in vitamin A, vitamin C and zinc; immunity is relevant to survivors with, e.g., respiratory tract infections and pressure ulcers. Diets that follow the U.S. Dietary Guidelines are sufficient to protect against these deficiencies, though it has been recommended that all adults should take a daily multivitamin (Fletcher and Fairfield, 2002). BRAIN INJURY PROFESSIONAL
There is also good evidence supporting Mediterranean type diets, which are associated with increased whole grain, vegetable, fruit, and olive oil consumption. Randomized controlled data show benefits on markers of metabolic syndrome X, which includes hyperglycemia, hypertension and an adverse lipid profile (Esposito et al., 2004). The Lyon Diet, an atypical Mediterranean diet that uses canola oil instead of olive oil, has been shown to be especially effective for coronary heart disease. While olive oil and canola oil are predominantly monounsaturated fats, canola oil has a larger fraction of the so-called omega-3, fish-oil fatty acids. The Lyon Diet Heart Study demonstrated an impressive 70% reduction in cardiac events in a randomized controlled, secondary prevention trial on heart disease (de Lorgeril et al., 1999). Such a dietary approach may be especially helpful in survivors because of their potentially increased risk of cardiac death. And, it may be especially important for survivors if cardioprotective approaches are also Alzheimer’s protective approaches. A heart healthy diet, which is also a brain healthy diet, should also include regular fish consumption. The American Heart Association recommends regular fatty fish consumption, defined as at least two servings per week (Kris-Etherton et al., 2002). A typical 170 gram (6 ounce) can of tuna contains 2½ servings. Fatty fish are rich in various nutrients, including the omega-3 fatty acids (fish oils). The long-chain omega-3 fatty acids, eicosapentaenoic acid and docosahexaenoic acid, are especially prevalent in the brain and are linked to among other things, cognition. One serving of canned salmon yields about a gram of these fatty acids (Kris-Etherton et al., 2002). Shorter chain omega-3 fatty acids are found in flaxseed, walnuts, soybeans and canola oil; their conversion to the longer chain omega-3 fatty acids is moderate at best and ranges from 15% to only 0.2% (KrisEtherton et al., 2002). In addition to its cardiovascular and stroke benefits, dietary omega-3 fatty acid intake is associated with a reduced risk for Alzheimer’s disease (Morris et al., 2003), potential benefits on the mood disorders (Freeman, 2000), and the promotion of neural plasticity. Interestingly, the fish brain is well known for its resistance to traumatic brain injury and continues widespread neurogenesis throughout adulthood. For instance, the brown ghost electric knifefish brain makes 50,000 new neurons per hour as an adult (Zupanc, 2001). One problem with regular fish consumption relates to toxic pollutants. The recent joint statement by the U.S. Environmental Protection Agency and Food and Drug Administration warns that tuna and salmon are contaminated with methylmercury, which can have adverse neurological effects (EPA/FDA Advisory, 2004). It recommends that high risk populations (e.g. pregnant women, young children) eat no more that 340 grams (12 ounces) per week of light tuna in water or oil and no more than 170 grams (6 ounces) per week of albacore tuna. It also cautions against regular consumption of locally caught fish. That said, many survivors eat little or no fatty fish. There are also concerns that salmon contains PCBs (polychlorinated biphenyls), which can have adverse neurobehavioral effects (Faroon et al., 2001). These compounds concentrate in the subcutaneous fat, which can be cut off before cooking or can be drained away during open grilling. As a result of these considerations, the best way to feed the survivor’s brain is with grains, vegetables, fruits, fish and nuts. Rule 5. Promote Mental Health in the Survivor. Successful aging is importantly related to mental health as well as to physical health. In 2001 there were 51% more suicides than homicides in the United States (Arias et al., 2003). Suicide has been called “the silent epidemic” and, according to the Brain Injury Association of America, accounts for 2/3 of all TBI firearm deaths. Mental illnesses, such as depression, bipolar disorder and schizophrenia, are major risk factors for suicide and increase the risk of a TBI by 70% (Fann et al., 2002). Depression is also a risk factor for Alzheimer’s disease (Green et al., 2003). It is obvious that a pre-injury mental illness does not magically disappear post-injury. Even without a pre-injury illness, once a TBI occurs, the lifetime risk of depression is increased by 54% (Holsinger et al., 2002). Even a mild TBI dramatically increases the risk of a mental illness within 6 months (Fann et al., 2004). Undeniably, psychiatric disorders negatively impact successful aging by affecting cognition, emotion and the general quality of life. It is also clear they impact cardiovascular and brain fitness. There is general agreement that mental illnesses are brain problems, which can, in turn, cause further brain injury. The glucocorticoid stress hormones demonstrate this toxic effect. Several (though not all) studies show that they are toxic to the primate hippocampal formation (Sapolsky, 2000), which is important for learning and memory, and which may be already compromised in certain survivors. These hormones are elevated in 12
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a variety of psychopathologies, including depression, bipolar disorder and post traumatic stress disorder (Sapolsky, 2000). The issues of loss and social isolation, together with the psychological burden of finding adequate housing, education and transportation are themselves other significant stressors. Regardless of its causes, a mental illness like depression not only compromises rehabilitation in the survivor, it also impairs successful aging by reducing quality of life and increasing the risk of cardiovascular disease and Alzheimer’s disease. Consequently, the importance of early and aggressive mental health interventions in survivors, the battle to reduce the stigma against mental illness, and the battle for health insurance parity for mental health coverage are imperatives for the promotion of their successful aging. The National Alliance for the Mentally Ill is an advocacy group dedicated to these issues. Rule 6. Avoid Tobacco, Alcohol and Other Drugs of Abuse in the Survivor. Chemical dependency is yet another factor that impairs successful aging in survivors. And, like mental illness, it causes brain injury. It has been estimated that 57% of TBI’s were pre-injury heavy drinkers (Kolakowsky-Hayner et al., 1999) and it is clear that alcoholism interferes with TBI recovery. But tobacco is the most deadly drug: According to the U.S. Centers for Disease Control and Prevention it kills more Americans than alcohol, the so-called illegal drugs, murders, suicides, traffic accidents and AIDS combined. It is a major risk factor for heart disease and stroke and is highly correlated with lung cancer and chronic obstructive lung diseases such as emphysema. Cardiovascular and respiratory fitness are important issues for aging survivors. All of the drugs of abuse affect the reward circuitry of the brain, which is importantly linked to drug craving (Maldonado, 2003). The circuit includes a midbrain structure also related to schizophrenia called the ventral tegmental area dopamine system, and two telencephalic structures, the nucleus accumbens and the prefrontal cortex. Once this circuit is injured, it is difficult for the chemically dependent person to just say no. The U.S. Substance Abuse and Mental Health Services Administration provides a database of validated model programs for the prevention and treatment of chemical dependency and mental illness (SAMHSA Model Programs, 2004). While it is clear that ethanol is the second most deadly drug, there is considerable interest in its potential health benefits. A phytochemical found in low concentrations in red wine called resveratrol has been shown in invertebrates to mimic the effects of the only experimental treatment argued to increase maximum life expectancy: prolonged caloric restriction without malnutrition (Wood et al., 2004). However, excessive alcohol exacerbates the cortical atrophy associated with normal brain senescence, is related to Wernicke’s encephalopathy and Korsakoff’s dementia, and adversely affects the heart (Oscar-Berman and Marinkovic, 2003; Spies et al., 2001). Recent data suggest that, while the equivalent of slightly less than one drink of alcohol per day reduced the risk of dementia, the equivalent of 2 drinks per day elevated it (Mukamal et al., 2003). Hence, the individual with alcoholism and TBI takes a double-hit for Alzheimer’s disease risk. The promotion of ethanol intake in survivors with impulse control problems or existing alcoholism raises obvious concerns. Instead, it is important to recognize that red wine is not the only source of potentially beneficial phytochemicals: hundreds are readily available in diets rich in whole grains, vegetables, and fruits. Rule 7. Avoid Social Isolation in the Survivor. It has been said, “The human brain is a social brain.” Fundamental human emotions such as love and laughter depend importantly upon social and physical contact with others. Successful aging, by definition, involves social engagement (Rowe and Kahn, 1997) and, at least in the rat, social factors impact neurogenesis and neuroplasticity (Lu et al., 2003). Pre-frontal lobe injury causes social isolation. But social isolation is also caused by economic, transportation, mobility and housing variables that affect survivors and caregivers alike. Animal research shows that social isolation causes physical injury to the brain and is associated with cognitive and emotional deficits (WhitakerAzmitia et al., 2000). Social isolation in a mouse model of Alzheimer’s disease also increases the expression of certain markers for the disease (Dong et al., 2004). It can be concluded that social isolation inhibits successful aging in the TBI survivor and is yet another pathology superimposed on brain senescence. From this perspective, social enrichment relates to more than the humane care and treatment of the survivor; it is an essential feature for brain fitness and an essential requirement for successful aging in both the survivor and the caregiver.
Rule 8. Protect the Survivor’s Brain. While the human brain is one of the most miraculous things in the universe, it is also among the most fragile. A brain injury is terrible, but a preventable brain injury is much worse. Greater enforcement of helmet use during motorcycling, biking, skateboarding, rollerblading, skiing, and snowboarding is needed, as is regular seat belt use. As individuals with TBI reside in more communitybased programs, providers must be educated about the vulnerability of their brains to a second impact and appropriate precautions must be taken. But, protection of the brain goes beyond personal protective equipment and includes regular fall assessments in older people and in people with disabilities (see Murphy et al. , current issue; Chang et al., 2004). Importantly, while the overall TBI death rate is declining, the fall-induced TBI death rate in older people is actually increasing (Adekoya et al., 2002). Partnerships with aging advocacy groups are needed to increase awareness of this serious public health issue and the need to elder proof and disability proof home environments to minimize falls. The U.S. Area Agencies on Aging are dedicated to the promotion of successful aging in older people. They can be found by using the resources of the U.S. Administration on Aging (Eldercare Locator, 2004). Protection of the brain also involves letting it sleep. The driving skills of sleep-deprived people are similar to those who are intoxicated with alcohol (Arnedt et al., 2001). Sleep deprivation also impairs impulse control, cognition, mood, attention, abstinence from drugs of abuse, and immune function (Working Group Report on Problem Sleepiness, 1997). Hence, sleep deprivation is yet another way to injure the brain and the body. Sleep deprivation is related to lifestyle issues and to various pathologies (Roehrs and Roth, 2004). Surprisingly, recent data indicate that more sleep disturbances occur in survivors with mild TBI than those with severe TBI (Mahmood et al., 2004). Referrals to specialized sleep disorder clinics are needed to help those with brain injuries better deal with this problem. The National Sleep Foundation lists sleep service providers throughout the United States. Rule 9. Form More Partnerships for Individuals with TBI. It is obvious that there should be close partnerships between brain injury, Alzheimer’s disease and mental health professionals. Surprisingly, this is often not the case. Sometimes this is by way of design. For instance, TBI can cause behavioral and psychiatric symptoms that are distinct from those associated with mental illnesses. And, injury to the prefrontal lobes often impairs the empathy and bonding necessary for psychotherapy. These problems are not unlike the behavioral and psychiatric problems associated with the irreversible dementias: Alzheimer’s disease, Lewy Body dementia, frontal-temporal dementia, and vascular dementia. More specialized acute and chronic neurobehavioral units are needed to better manage the unique behavioral complications of organic brain injury. But, like TBI, it is also clear that mental illness is a form of brain injury. Consequently, mental health, TBI and Alzheimer advocacy groups have overlapping issues regarding lack of services, respite care, social isolation, guardianship, end of life issues, stigma, and the impairment of successful aging. This is why the American Brain Coalition (ABC) was recently formed: to strengthen ties between advocates and professional across all neurological and psychiatric disorders (American Brain Coalition, 2004). For instance, instead of competition between mental health, Alzheimer’s, and TBI advocacy groups for Medicaid waivers and public guardianship programs, there ought to be greater cooperation. Towards that end, it is time to sound the call for a brain injury summit sponsored by leading organizations that share common interests based on brain dysfunction. Its goal would be to forge more cooperation, reduce zero-sum competition and share the lessons learned with one neuropathology as they might apply to another. This proposed summit is in the spirit of the new initiative of the U.S. National Institutes of Health called the Neuroscience Blueprint (2004) to promote greater interdisciplinary neuroscience research and training. Rule 10. Look for Greatness in Each Person . The human brain is the last frontier of science: we will know more about parallel universes, colliding galaxies and black holes long before we understand the universe between our ears. The following four variables from Brain Facts (2002) combine to demonstrate the uniqueness and possibilities of this universe. Variable 1: The human brain has about as many neurons as there are stars in the Milky Way Galaxy (over 100 billion). Variable 2: Under normal circumstances, there are 10 times as many cells called glia cells, which play a supportive role in the nervous system and, following injury, can contribute to its secondary complications. Variable 3: Each
neuron makes connections with thousands of other neurons over small spaces called synapses. Variable 4: Remarkably, the synaptic connections change each time we do something, experience something or learn something. This continuing, unrelenting reorganization of the brain is called neural plasticity; another name for neural plasticity is hope; and another name for hope is research. Two conclusions follow from the summation of these four variables. The first is that every person, brain injured or not, has a magnificent and unique brain. The second is that there are an infinite number of possible synaptic connections in all of our brains, injured or not. Stated differently, the organization of the human brain has limitless possibilities. Gerthe says, “you see what you look for.” If you look for greatness in survivors, you will see it. If you look for greatness in caregivers, you will see it. If you look for greatness in other professionals, you will see it. Importantly, what you look for you measure, you validate, you fight for, and you implement. Look beyond the biology of brain injury and beyond the field of TBI. Look for the multidisciplinary, biopsychosocial promotion of successful aging in survivors and caregivers.
ABOUT THE AUTHORS Paul F. Aravich, Ph.D., is a neuroscientist and Associate Professor in the Department of Pathology and Anatomy and the Glennan Center for Geriatrics and Gerontology at Eastern Virginia Medical School, Norfolk, VA 23507. He is Chair of the Virginia Brain Injury Council, and a member of the Governor’s Public Guardian and Conservator Advisory Board, the National Alliance for the Mentally Ill of Virginia, the Southeastern Virginia Chapter of the Alzheimer’s Association, and the Society for Neuroscience. His research interests are on nutrition, exercise and the brain. Anne McDonnell, OTR/L, is Acting Executive Director and Director of Special Projects for the Brain Injury Association of Virginia and an officer of the Virginia Brain Injury Council. She is interested in the development of regional resource centers for survivors and their families; in increasing services, education and awareness; and in the development of home safety assessments. She also directs the Brain Injury Association of Virginia’s nationally recognized Camp Bruce McCoy for survivors.
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Noice H, Noice T and Staines G: A short-term intervention to enhance cognitive and affective functioning in older adults. J Aging Health 16(4):562-585, 2004. Oscar-Berman M and Marinkovic K: Alcoholism and the brain: an overview. Alcohol Res Health 27(2):125-133, 2003. Patnaik BK, Mahapatro N and Jena BS: Ageing in fishes. Gerontology 40(2-4):113-132, 1994. Pratt RR: Art, dance, and music therapy. Phys Med Rehabil Clin N Am 15(4):827-41, 2004. Rentz CA: Memories in the making: outcome-based evaluation of an art program for individuals with dementing illnesses. Am J Alzheimers Dis Other Demen 17(3):175-181, 2002. Roehrs T and Roth T: Sleep disorders: an overview. Clin Cornerstone 6(Suppl 1C):S6-S16, 2004. Rolland Y, Rival L, Pillard F et al.: Feasibily of regular physical exercise for patients with moderate to severe Alzheimer disease. J Nutr Health Aging. 4(2):109-113, 2000. Rowe JW and Kahn RL: Successful aging. Gerontologist 37(4):433-440, 1997. SAMHSA Model Programs: Effective Substance Abuse and Mental Health Programs for Every Community. Available on the World Wide Web at: http://www.modelprograms.samhsa.gov. Accessed December 28, 2004. Sapolsky RM: Glucocorticoids and hippocampal atrophy in neuropsychiatric disorders. Arch Gen Psychiatry 57(10):925-935, 2000. Shavelle RM, Strauss D, Whyte J et al.: Long-term causes of death after traumatic brain injury. Am J Phys Med Rehabil 80(7):510-516, 2001. Spies CD, Sander M, Stangl K et al.: Effects of alcohol on the heart. Curr Opin Crit Care 7(5):337-343, 2001. Surgeon Generalâ€™s Report: Physical Activity and Health: A Report of the Surgeon General. Atlanta, GA: U.S. Dept of Health and Human Services, Centers for Disease Control and Prevention, National Center for Chronic Disease Prevention and Health Promotion, 1996. Wu A, Molteni R, Ying Z et al.: A saturated-fat diet aggravates the outcome of traumatic brain injury on hippocampal plasticity and cognitive function by reducing brain-derived neurotrophic factor. Neuroscience 119(2):365-375, 2003. Whelan FJ, Walker MS and Schultz SK: Donepezil in the treatment of cognitive dysfunction associated with traumatic brain injury. Ann Clin Psychiatry 12(3):131-135, 2000. Whitaker-Azmitia P, Zhou F, Hobin J et al.: Isolation-rearing of rats produces deficits as adults in the serotonergic innervation of hippocampus. Peptides 21(11):1755-1759, 2000. Williams GC: The 1999 Crafoord Prize lectures. The Tithonus error in modern gerontology. Q Rev Biol 74(4):405-415, 1999. Working Group Report on Problem Sleepiness. National Center on Sleep Disorders Research and Office of Prevention, Education, and Control. National Heart, Lung and Blood Institute. National Institutes of Health, 1997. Available on the World Wide Web at: http://www.nhlbi.nih.gov/health/prof/sleep/pslp_wg.pdf. Accessed December 28, 2004. Wood JG, Rogina B, Lavu S et al.: Sirtuin activators mimic caloric restriction and delay ageing in metazoans. Nature 430(7000):686-689, 2004. Erratum in: Nature 431(7004):107, 2004. Zupanc GK: Adult neurogenesis and neuronal regeneration in the central nervous system of teleost fish. Brain Behav Evol 58(5):250-275, 2001.
The Graying of Brain Injury: An Overview
by Tina M. Trudel, PhD, Thomas Felicetti, PhD and Michael P. Mozzoni PhD INTRODUCTION The graying baby-boomer generation has placed a national spotlight on issues of aging that bears relevance in the field of brain injury. Since the Vietnam War era, enhancements of the medical emergency response system and advances in trauma care have contributed to a growing population of individuals surviving moderate and severe brain injuries. Although the majority of initial brain injuries continue to strike those under age 30, two-thirds of these individuals will live at least another 30-40 years. Eighty thousand individuals per year experience the onset of long-term disability due to head trauma (BIA, 2000; CDC, 2001). These numbers are compelling, both from an ethical and long-term public health policy standpoint, although estimates of disablement in the population of individuals with brain injury vary significantly (Dawson & Chipman, 1995; Tennant, MacDermott & Neary, 1995). The issues associated with aging after brain injury have become a focus for individuals with brain injury, families, friends, providers and researchers (ACRM Long Term Issues Task Force, 2001; Calontonio, Ratcliff, Chase & Vernich, this issue; Dawson & Chipman, 1995; Klein, Houx & Jolles, 1996; Trudel & Purdum, 1998). 16
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BRAIN INJURY LONG TERM OUTCOME STUDIES The definition of “long term” in brain injury research has expanded over time, as the body of research and population studies have evolved. Many early long term studies of aging with brain injury were conducted outside of the United States, with populations followed in the United Kingdom, Australia and Denmark (Brooks, Campsie, Symington, Beattie & McKinlay, 1986; 1987; Oddy, Coughlan, Tyerman & Jenkins, 1985; Tate, Fenelon, Manning & Hunter, 1991; Tate, Lulham, Broe, Strettles & Pfaff, 1989; Thomsen, 1984). Thomsen (1984) collected data on the demographics and lifestyle of 40 individuals in Denmark with severe traumatic brain injury who ranged from 10 – 15 years post-injury. This longterm follow-up provided evidence of good motor recovery, and noted that neurological residua were more easily tolerated than psychiatric problems, which included symptoms of dementia in some individuals. Of the 40 individuals surveyed, 20% had demonstrated post-traumatic psychosis with no pre-injury psychiatric history, and 30% remained dependent in activities of daily living. Approximately two-thirds of Thomsen’s (1984) sample had permanent changes in personality/emotions, a phenomenon which had
increased over time since injury, and two-thirds reported no social contacts outside of close family members. Thomsen (1984) concluded that it was not possible to determine if long-term psychological/behavioral problems were caused by actual brain trauma or the individual’s reaction to living with disability over time. Brooks and colleagues (1986; 1987) reported findings similar to the Thomsen (1984) data, with affective and behavior disorders persisting over 10 years. Again, most participants in the study evidenced good physical recovery, with symptom emphasis in the areas of personality and behavior change (Brooks et al., 1986; 1987). In subjective and emotional categories, there was evidence of a consistent downward trend over time, although it did not reach statistical significance due in part to decreased sample size in the long term groups (Brooks et al., 1987). Eight of the top ten problems most frequently reported by relatives at five years post-injury were psychological in nature, with the most commonly reported symptom, personality change, increasing from 60% at year one to 74% at year five. Family subjective burden also increased over time, with the researchers noting that the scenario at year five was similar to or worse than that at year one (Brooks, et al., 1986). A group of 34 individuals seven years postinjury were assessed by Oddy et al. (1985), with findings again similar to those of Thomsen (1984). Personality problems were commonly reported, with relatives reporting a higher percentage of a variety of symptoms that the participant with the injury, a methodological problem also evident in the Brooks et al., (1986; 1987) studies. At seven years post-injury, the Oddy et al. (1985) study participants with brain injury engaged in few social or leisure activities, and social isolation was an obvious major problem. In a similar vein as Brooks and colleagues (1986), Oddy et al. (1985) remarked on minimal positive change in this sample over a period spanning five years (from two to seven years post injury). Tate et al., (1989) examined the psychosocial reintegration of 87 individuals at six years post severe head injury, with three-quarters demonstrating considerable difficulty in this area of functioning. Even the approximately 25% of study participants classified as having good social reintegration often presented with dependence on others, social isolation, occupational status decreases and difficulties with work skills. Vocational activities favorably mediated social integration, as was later supported by O’Neill et al. (1998) commenting on the previous scientific support for such services, and the continued status of residential, occupational and social support services as “hopelessly inadequate”. While critical of the lack of resources, the importance of vocational activity as positively influencing social integration is evident in a number of research studies and clinical practice. Evaluation of neuropsychological status six years post brain injury identified impairments in 70% of the sample of 82 subjects (Tate et al., 1991). Deficits in learning and memory were the most common persistent neuropsychological symptom, reported by 56.5% of the study participants. It appears therefore, that residual neuropsychological sequelae are present in a majority of the sample, and are as widespread as psychological/personality changes and social isolation. These cognitive problems may be under-reported in those studies reliant on selfreport or family report, wherein impaired awareness of disability in the former (Trudel, Tryon & Purdum, 1998) or reaction to psychological/personality changes in the latter (Brooks et al., 1986; 1987) may reduce sensitivity to or overshadow neuropsychological deficits that are otherwise evident on formal testing.
Klein et al. (1996) assessed the neuropsychological performance of 25 middle-aged and 20 older adults who were a few decades post-injury, typically reporting a history of mild to moderate brain injury. It is noteworthy that these study participants viewed themselves as “normal and healthy”, with relatively successful social integration. However, consistent with Tate et al.’s (1991) findings, the participants with brain injury, both middle aged and older adults, demonstrated lower performance on tests of memory when compared to non-injured, age matched controls. Researchers attempting to link long term outcome with service planning in the United Kingdom followed 190 individuals with brain injury on average for seven years (Tennant et al, 1995). At follow-up, 23% presented with moderate disability or worse and 36% were not occupying their time in a meaningful way. Planning needs based on projections from this study included anticipating persistent problems for one-third, and need for activity of daily living support in 16%, of individuals post brain injury. A comprehensive analysis of the disablement experience of 454 individuals, on average 13 years post-brain injury, recounted a rather disturbing scenario. This Canadian sample included 66% of the participants requiring on-going assistance with some aspects of activities of daily living, and 75% of participants out of work (Dawson & Chipman, 1995). Of the 25% of respondents with brain injury who were working, 30% were employed in sheltered workshops or volunteer settings, and 80% report some employment disadvantage related to their disability. Social integration handicap was evidenced by 27% never socializing with friends/family at home, 20% never visiting at other’s homes, and a remarkable 47% reportedly not talking on the phone. As in earlier studies, vocational and social integration handicap far exceeded physical independence handicap. A study described in a series of publications and reviewed by Colantonio, Ratcliff, Chase and Vernich (this issue), 306 former inpatient rehabilitation program participants were surveyed on average 14.2 years post-injury. Findings suggest evidence of accelerated aging, including physical and sensory changes and worsening cognition. Mobility, arthritis and continued sleep problems were also noted as significant concerns, ,with 42% of the population re-hospitalized since discharge from rehabilitation. Twenty-seven to 30% of the sample (even greater among those over 65) required assistance with instrumental activities of daily living such as shopping and banking, consistent with the findings of Dawson and Chipman (2005). Post-TBI depression was also a concern, and mental health was the strongest predictor of quality of life. Multi-variate analyses demonstrated that participation in employment and leisure also served as significant predictors of quality of life. VOCATIONAL OUTCOME The importance of work has been demonstrated as a positive mediating factor in long-term outcome studies examining quality of life and psychosocial integration (Colantonio et al., this issue; O’Neill, 1998; Tate et al., 1989). Return to work as soon as possible post-TBI also appears to be important, as Oddy et al. (1985) found those employed at the two-year mark post-TBI were far more likely to be employed at 5 and 7 years post-TBI. Research studies concerning the rate of return to work for people with brain injury clearly demonstrate a significant decline relative to pre-injury employment rates. Brooks et al. (1987), found fewer than 30% of individuals with severe brain damage in their sample were employed at 2 to 7 year follow-up. More recent studies further demonstrate troubling vocational findings in TBI internationally.
In a large Australian study of individuals with predominantly severe injuries, 38% returned to what the authors deemed a ‘high level of productive activity’ 2-5 years post-injury. High levels of productive activity were determined through aggregate scores on the Community Integration Questionnaire, based in part on vocational attainment. However, this more productive group was less well integrated into other domains of life, such as home and social activities (Doig, Fleming and Tooth, 2001). A 7-8 year follow-up study of individuals with severe TBI in Germany notes a similar 37% rate of successful return to work, with an additional 16% of participants returning to work at a significantly lower level of employment. Further, persisting difficulties with maintaining employment were noted in 19% of the German follow-up group (Possl, Jurgensmeyer, Karlbauer, Wenz & Goldberg, 2001). More optimistic vocational findings are observed in the Hoofien et al. (2001) Israeli sample of individuals on average 14 years post-TBI. Approximately 60% of the Israeli sample was employed, with roughly one-third employed in non-competitive, sheltered settings. Participants demonstrated difficulties with employment stability and were predominantly employed in low-level administrative or technological occupations that were highly structured and routine. A large-scale Finnish study by Asikainen et al. (1998) has been cited as another example of high return to work rates, as 57% of those with moderate to severe injury were reported as in ‘independent employment’. This is misleading, as the category ‘independent employment’ was also used to classify those individuals who were judged to be capable of working, even though they were not actually employed. The employment rates for the older members of this sample were also far less positive than the younger members. Thus, it is likely that patterns of return to work after TBI are actually comparable in Finland if one considers the difference between ‘capable of employment’ versus ‘actually employed’. Dawson and Chipman’s (1995) Canadian community-based representative sample, on average 13 years post-injury, presents a bleaker scenario, with only 25% of participants vocationally engaged, half of those in unpaid positions. In reviewing TBI vocational outcome literature with a focus on supported employment, Gamble and Moore (2003) summarized multiple sources demonstrating 20 years of disappointing return to work. These TBI vocational results are characterized by return to work rates of 22-55%, low wage levels for those able to secure employment, poor job retention and lack of durability of employment for those with severe TBI. In comparing more recent employment outcomes for individuals with TBI in a southeastern U.S. sample, Gamble and Moore (2003) discussed the significant benefit of supported employment models, wherein approximately 68% of participants who had received supported employment were competitively employed at the time of vocational rehabilitation case closure, in comparison to 47% who did not receives such services. In one of the few U.S. studies to follow a cohort beyond a decade, Klonoff, Lamb and Henderson. (2001) demonstrated 67% of participants with TBI involved in work or education at 11 years post-discharge, with no apparent decline in productivity. All of these participants were from a clinical sample that had received extensive rehabilitation at a well-regarded milieu-oriented day treatment program. Positive vocational outcomes were associated with participant characteristics of youth, male gender and higher ratings of engagement in the program, by implication demonstrating negative outcome for the older participants. The Long Term Issues Task Force (LTITF)
of the Brain Injury Interdisciplinary Special Interest Group (BI-ISIG) of the American Congress of Rehabilitation Medicine (ACRM) has been investigating a variety of long-term issues in the aging with brain injury population (discussed further below). As a part of this investigation, the LTITF conducted a survey of persons who were 10 years or more post injury, had sustained a traumatic brain injury after age 16 and were currently at least 36 years of age. Participants were solicited through state chapters of the Brain Injury Association (BIA), conferences, professional, provider and advocacy networks and both ACRM and BIA websites. At the time of this writing, over 1800 surveys have been distributed, with 312 surveys returned. Only 18% of respondents in the initial pilot study (n=56) reported some level of employment (full or part time), while in this larger LTITF survey currently underway (n=312, predominantly moderate and severe TBI, 14.7 years post-injury) only 12% of respondents were competitively employed with another 20% reporting sheltered or supported employment. Other studies and literature reviews have typically demonstrated older age as associated with poorer post-TBI vocational outcome (Asikainen et al., 1998; Brooks et al., 1987; Oddy et al., 1985; Wehman, Targett, West & Kregel, 2005). The aforementioned research has largely been based on clinical populations followed through healthcare providers and systems. In contrast, Skeel, Bounds, Johnstone, Lloyd and Harms (2001) examined the effects of age on employment of individuals with TBI in a state vocational rehabilitation system. Participants were followed from enrollment through case closure, and were divided into three age groups: <30 (6.9 years post-TBI on average); 30-44 (9.5 years post-TBI on average); and >44 (11.0 years post-TBI on average). While age contributed to certain cognitive and demographic measures, there were no reported differences in age-related vocational outcome (Skeel et al., 2003). PSYCHIATRIC AND SEIZURE ISSUES In a comprehensive review article, Gaultieri and Cox (1991) discussed five delayed sequelae of traumatic brain injury identified in the literature. The sequelae referenced included delayed amnesia, affective disorders, post-traumatic epilepsy, posttraumatic psychosis, and dementia. As memory and cognition have been mentioned previously, the latter four sequelae are most germane to this overview. Affective disorders, depression in particular, are a complicating factor in recovery from brain injury, and were more recently addressed in a comprehensive review article (Rosenthal, Christensen & Ross, 1998) as well as in the studies by Colantonio et al. noted above. Rosenthal et al. (1998) reviewed 27 brain injury and depression studies, although no sample demographics were presented regarding time since injury. Brain injury related depression appears to arise from, and be maintained by, a combination of neuroanatomical, neurochemical and psychosocial factors, and occurs in both the acute phase and in the long term following brain injury. Although causal relationships have not been established between social isolation, unemployment, reduced leisure activity, and depression in the post-acute population of individuals with brain injury, strong correlations exist among these variables, and it is reasonable to speculate that these common long term community integration problems contribute adversely to psychological status, just as it is evident that depression adversely impacts functional outcome (O’Neill et al., 1998; Rosenthal et al., 1998). Interpreting psychiatric data in relation to brain injury is complicated by pre-existing conditions (particularly substance abuse related). BRAIN INJURY PROFESSIONAL
Researchers have reported data on pre-existing psychiatric disorders in a sample of individuals with brain injury at 51% (Hibbard, Uysal, Kepler et al., 1998). Post-injury prevalence of overall Axis I psychomorbidity (multiple diagnoses) is reported as ranging from 44% to 56%. Primary post-injury Axis I psychiatric diagnoses included major depression, substance abuse and certain anxiety disorders (Hibbard, Uysal, Kepler et al., 1998; Van Reekum, Bolago, Finlayson, Garner & Links, 1996). Thus, the majority of individuals with brain injury appear to experience serious psychiatric complications featuring primarily depressive and/or multiple diagnoses, which negatively influence outcome and recovery, presumably on a long-term basis. One of the most devastating psychiatric sequelae of traumatic brain injury is that of psychosis. Thomsen’s (1984) sample presented a 20% incidence of psychosis during the period 10 to 15 years post-injury. Gaultieri and Cox (1991) reviewed a number of studies demonstrating post-brain-injury psychosis, with prevalence of this phenomena ranging from 8.9% to 20%. Based on their review, Gaultieri and Cox (1991) estimate the actual prevalence of postbrain- injury psychosis at 2% to 5% following mild or moderate injuries, and 10% or more following severe injuries. A contributing factor to the probability of developing psychosis is the presence of post-traumatic epilepsy. Post-traumatic epilepsy is associated with many unfavorable long-term consequences as reviewed in Gaultieri and Cox (1991), as well as Hernandez and Naritoku (1997) and other sources. These adverse post-traumatic epilepsy sequelae include shortening of life span, neurotoxic effects of long term anticonvulsant use, increased probability of psychiatric complications, and in some studies, a reduced overall functional outcome (Gaultieri & Cox, 1991). A review table of 12 animal and human studies assessing the effects of traditional anticonvulsants (diazepam, phenytoin, carbamazepine, phenobarbitol, vigabatrin, and benzodiazepines) on functional recovery from brain injury displayed two findings of no effect, and ten studies indicating hindrance in functional recovery. Animal research suggest that administration of anticonvulsants during the immediate post-traumatic recovery period could impede functional recovery indefinitely, as could the actual occurrence of seizures, and the effects of the two together may be additive (Hernandez & Naritoku, 1997). Epilepsy risk factors relate to the nature and extent of brain injury. Mild to moderate brain injury increased risk 2 to 5 times, severe brain injury 10 times, and severe stroke or penetrating brain injury, approximately 50 times. If posttraumatic epilepsy develops, there is a 50% probability that it will not remit. If the seizure focus is temporal or limbic, there is a 33% probability that a significant psychiatric disorder will develop (Gaultieri & Cox, 1991). With this data in mind, it is evident that post-traumatic epilepsy must be carefully considered in assessing long-term outcome for both individual and population research and planning. DEMENTIA In studying risk for Alzheimer’s disease, three factors have become evident: age (diagnosis is in part age determined), family history of Alzheimer’s disease or Down’s syndrome (present in first degree relative and therefore increasing genetic probability) and history of traumatic brain injury (Gaultieri & Cox, 1991; Lye & Shores, 2000; Rasmusson, Brandt, Martin & Folstein, 1995). Diagnosis of Alzheimer’s disease may also be complicated by depression, with many accounts of co-morbid 18
BRAIN INJURY PROFESSIONAL
mild or major depression. Depression adversely impacts cognition, and makes differential diagnosis of early Alzheimer’s disease in an individual with residual cognitive problems from an earlier brain injury much more difficult. A number of studies suggest that brain injury is a risk factor for Alzheimer’s disease, and there are some indications (with less evidence) for early onset of dementia following brain injury (Lye & Shores, 2000; Nemetz et al., 1999; Rasmusson et al., 1995; Sullivan, Petitti & Barbaccia, 1987). In comparing reported brain injury at least five years prior to onset, Rasmusson et al. (1995) found a brain injury history of 43.5% (mild to severe) in true sporadic cases of Alzheimer’s disease (nonfamilial) and only a 2.9% prevalence of brain injury in the control group, and concluded that even mild brain injury may serve as a predisposing factor for some cases of Alzheimer’s disease. Regarding the theoretical basis for the development of Alzheimer’s disease (or Alzheimer’s type neurodegeneration) following traumatic brain injury, Rasmusson et al. (1995) discussed the possibilities that brain injury contributes to the death of neurons by axonal shearing, or by weakening the blood-brain barrier thereby exposing the brain to potential neurotoxins. However, the most probable explanation endorsed by researchers involves the deposit of beta-amyloid (B-A4 proteins) in the brain, which has been demonstrated in the cortex of young and old victims of brain injury upon autopsy, including boxers experiencing dementia pugilistica. B-A4 amyloid is a protein implicated in the formation of diffuse plaques and neuritic tangles, known constituents of the fully formed senile plaques found in Alzheimer’s disease. (Rasmusson et al., 1995). Current research is focused on the role of genetic predisposition in the probability of developing the plaques and tangles of Alzheimer’s type neurodegeneration. A strong relationship has been demonstrated between beta-amyloid deposits and the genotype ApoE-4 (apolipoprotein E) in humans and animals. This not only effects probability of developing neurodegeneration over time, but also appears to influence brain injury outcome overall (Mayeux et al., 1995; Nicoll et al., 1995). In assessing betaamyloid and ApoE-4 as related to brain injury outcome, Nicoll et al. (1995) noted higher occurrence of both among individuals who died from brain injury than those who did not, further confirming the role of ApoE-4 and beta-amyloids in brain health, function and recovery. AGING, HEALTH and SERVICES Although we are only now beginning to experience the wave of aging 1970’s survivors of brain injury, there are other populations from which we might learn valuable lessons. For example, elderly persons with developmental disabilities generally have mild intellectual impairments and are relatively independent in basic activities of daily living. However, older adults with developmental disabilities were noted to age sooner than the nondisabled elderly, have greater health problems, and have a high incidence of affective disorders, particularly depression. These symptoms were viewed as due to institutionalization, lack of social integration and cognitive/communication difficulties (Jenkins, Hildreth & Hildreth, 1993). Recommendations to improve the aging process for individuals with developmental disabilities have included: enhancing overall healthcare provision and monitoring; developing varied living opportunities (as a disproportionate number of elderly persons with developmental disabilities were noted to previously be in nursing homes); providing activities that emphasize socialization, leisure activity and productivity; and establishing mechanisms for legal protection and financial
management (Jenkins et al., 1993). The aforementioned recommendations relevant to individuals with developmental disabilities, although by no means comprehensive, are meaningful for individuals aging with brain injury. Research indicates the potential benefit of an enhanced health focus, with evidence of premature aging and greater neurologic, endocrine and arthritic complaints in multiple samples of individuals with brain injury (Colantonio et al., this issue; Hibbard, Uysal, Sliwinski & Gordon, 1998). Sexual health is also adversely impacted as reported by about half of participants in studies on post-TBI sexual changes (Ponsford, 2003). Other factors mentioned regarding elderly individuals with developmental disabilities relate to all aging populations. For example, within non-brain-injured, non-developmentally disabled elderly populations, it is well documented that community living appears to facilitate cognitive performance in comparison to institutional placement. However, the increase in requested services for individuals with cognitive disabilities has often exceeded the abilities of existing community independent living centers, and traditional rehabilitation providers were initially slow to expand community-based/support services. Reasons cited for difficulty serving consumers with brain injury through existing community independent living programs included: that services were provided elsewhere; diagnostic concerns; lack of experience; funding; resource insufficiency; and perceived training and education inadequacies. In general, much needed services for individuals aging with brain injury are generally undeveloped and underfunded, with existing service systems struggling to accommodate this new population. ACRM STUDY The American Congress of Rehabilitation Medicine – Brain Injury Interdisciplinary Special Interest Group has undertaken a large scale study examining aspects of aging with brain injury (special focus on health and prevention) through its Long Term Issues Task Force. The initial survey was developed through adaptation of the NIDRR Model Systems demographic data, with addition of specific variables related to a more long-term perspective. In order to assess participant perceived health, permission was secured for use of the SF-36 (Ware, 1993), a short form survey of health status that has been used in hundreds of studies with various disease and disability populations. Also included were items addressing adverse health behaviors such as smoking, alcohol consumption and use of illegal drugs. Fifty-seven participants from seven states and the province of Ontario completed the pilot study. Based on feedback from these participants, other persons with brain injury, and rehabilitation professionals, additional items were added to include height, weight and funding at time of injury and currently; open-ended questions regarding medical conditions and health impact; questions regarding wellness efforts and their benefits, and a health maintenance addendum assessing preventive care and relationship with one’s doctor. Also included were questions examining social integration (visits and telephone contact with friends), derived from a previous large-scale Canadian study of brain injury long-term outcome (ACRM Long Term Issues Task Force, 2001; Dawson and Chipman, 1995). The target population of the current Aging with Brain Injury study includes males and females who sustained traumatic brain injury after the age of 16, who are currently at least 10 years post-injury. Participants volunteer to complete the survey with or without assistance. Approxi-
mately 1,800 surveys have been disseminated thus far, with over 300 completed returns of individuals approximately 14.7 years post-injury. While data analyses are currently in process, early findings suggest high rates of unemployment, seizures, medication use, obesity, smoking and hypertension, with health benefits from positive health and lifestyle choices. The most frequent complaint reported is that of chronic pain (21%). Specific examination of obesity and hypertension demonstrates high rates, but these are consistent with similar high rates in the general population of the United States. Preventive care and physician awareness have anecdotally been reported as deficient, and adversely impacting health outcomes. Specific LTITF study questions addressed these topics, and thus far demonstrate the majority of participants viewing their medical providers as helpful or very helpful. Shortcomings are evident in that while the majority of study participants were on more than one medication (often including psychotropics and/or seizure prophylaxis), the last contact with physician was 147 days past on average. Also, based on age and gender, only 15% of the 312 surveys returned thus far indicated preventive tests consistent with recommended timelines (by established age/gender screening procedures including: blood pressure, cholesterol, EKG, colorectal exam, blood sugar, dental, vision, hearing, prostate, breast exam, mammogram and pap smears). Further analyses of the ACRM surveys are in process and will be submitted for publication later this year. This survey is on-going. The ACRM Long Term Issues Task Force is still seeking individuals who meet the research participant criteria (TBI after age 16, currently 10+ years postinjury and over 30) to complete a questionnaire which can be requested through project coordinator Tina M. Trudel, PhD at (603)539-7451 or firstname.lastname@example.org. The survey may be completed independently or with assistance, and consists of demographic information, a short-form health survey (SF-36), and additional health questions. It is not a burdensome task, and the information obtained from a large, diverse group of respondents will contribute to developing our knowledge base, raising awareness of a significant public health problem, enhancing public health policy, highlighting health maintenance and prevention, and providing a foundation for clinicians and researchers in the future. CONCLUSION Aging with brain injury poses a challenge to the individuals living this experience, as well as those living with, loving, studying, serving, and planning to assist those aging with brain injury. Some individuals with brain injury age well and lead healthy, joyful and productive lives well into their senior years. However, for many individuals, brain injury is a chronic condition, with one-third to two-thirds of this population requiring ongoing services. Research evidence supports the prevalence of long term psychological / personality / behavioral changes, problems in memory and learning, social isolation, chronic unemployment, major psychiatric disorders (especially depression), and risk for persistent post-traumatic seizure, development of Alzheimer’s type neurodegenerative disease, arthritis and/or other health problems in at least a sizable minority of this population. Research on aging with brain injury is rather sparse, and methodological problems are inherent in this arena, such as convenience sampling, difficulty tracking participants over time, inaccurate self or family report, confounds of accurate self-appraisal and long-term
outcome, and effects of trauma other that those related to brain injury per se (McKinlay & Brooks, 1984; Trudel, Tryon & Purdum, 1998). The definition of “long term” continues to evolve in the field of brain injury, making data comparison challenging. Reviews of existing findings across studies should be given consideration on an individual basis, such as when developing community supports, preparing a life care plans, and establishing public policy in the area of brain injury services. The systems and structures for service provision have, and must continue to evolve to meet the needs of the brain injury population and the cohorts contained therein. However, it would be beneficial for proactive research and planning to occur with the same vigor as the unavoidable pressures for cost containment evolve. Models of research for public policy and planning should include both surveillance and model population follow-up systems, as well as meaningful measures that assess non-traditional / independent / community living options and outcomes. Careful examination of those with TBI who age well is also an important part of what we contribute to wellness and quality of life. Through the combined efforts of clinicians, researchers, survivors and families, we will be able to successfully support the quality of life of individuals aging with brain injury in a dignified, ethical and effective manner.
ABOUT THE AUTHORS Tina M. Trudel, PhD is Executive Director of Lakeview NeuroRehabilitation Center and VP of Clinical Services for the Lakeview companies. She chairs the NH Brain & Spinal Cord Injury Advisory Council, is a post-doctoral supervisor in neuropsychology – adjunct Asst. Professor of Psychiatry at Dartmouth Medical School, adjunct faculty for the University System of NH and has published and presented extensively. She has worked in brain injury rehabilitation since 1985, is a Clinical Examiner and governing board member of AACBIS, as well as chair of the Long Term Issues Task Force and coordinator of the ACRM, BI-ISIG study of aging with TBI. Thomas Felicetti, PhD is the Executive Director of Beechwood Rehabilitation Services, a division of Woods Services in Langhorne, PA. He is currently chairperson of the Brain Injury Interdisciplinary Special Interest Group of the American Congress of Rehabilitation Medicine. Dr. Felicetti is a core member and former chairperson of the Long Term Issues Task Force of the BI-ISIG, ACRM. Michael Mozzoni, PhD is the Corporate Director of Research and Outcome Studies for the Timber Ridge NeuroRestorative Group in Little Rock, AR. He is a board certified behavior analyst and American Academy for the Certification of Brain Injury Specialists (AACBIS) Clinical Examiner who has worked with persons with brain injuries since 1985. Dr. Mozzoni has extensive local and national presentations and publications in the areas of brain injury rehabilitation, employee turnover, behavior management and skill acquisition. He is a core member of the Long Term Issues Task Force of the BI-ISIG, ACRM.
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Skeel, R.L., Bounds, T., Johnstone, B., Lloyd, J. & Harms, N. Age differences in a sample of state vocational rehabilitation clients with traumatic brain injury. Rehabilitation Psychology, 48: 145-150, 2003. Sullivan, P., Petitti, D. & Barbaccia, J. Head trauma and age of onset of dementia of the Alzheimer’s type. Journal of the American Medical Association, 257:2289-2290, 1987. Tate, R.L., Fenelon, B, Manning, M.L. & Hunter, M. Patterns of neuropsychological impairment after severe blunt head injury. Journal of Nervous and Mental Disease, 179:117-126, 1991. Tate, R.L., Lulham, J.M., Broe, G.A., Strettles, B & Pfaff, A. Psychosocial outcome for the survivors of severe blunt head injury: The results from a consecutive series of 100 patients. Journal of Neurology, Neurosurgery and Psychiatry, 52:1128-1134, 1989. Tennant, A., MacDermott, N., & Neary, D., The long term outcome of head injury: Implications for service planning. Brain Injury, 9(6):959605, 1995. Thomsen, I.V. Late outcome of very severe blunt head trauma: A 10-15 year second follow-up. Journal of Neurology, Neurosurgery, and Psychiatry, 47:260-268, 1984. Trudel, T.M., Tryon, W.W., & Purdum, C.M., Awareness of disability and long term outcome after traumatic brain injury. Rehabilitation Psychology, 43(4):267-281, 1998. Trudel, T.M., & Purdum, C.M., Aging with brain injury: Long term issues. The Rehabilitation Professional, 6:37-41, 1998. Van Reekum, R., Bolago, I., Finlayson, M.A.J., Garner, S. & Links, P.S. Psychiatric disorders after traumatic brain injury. Brain Injury, 10(5):319-327, 1996 Wehman, P., Targett, P, West, M. & Kregel, J. Productive work and employment for persons with traumatic brain injury. Journal of Head Trauma Rehabilitation, 20(2):115-127, 2005.
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OCCUPATIONAL THERAPIST NeuroRestorative Specialty Services is seeking a full-time OT for our brain injury treatment program located at The University of Texas Health Care Center at Tyler, Texas. A degree and state license are required; experience is preferred but not necessary. We offer an excellent salary and comprehensive benefits. Please send resumes to: Jennifer King, NeuroRestorative Specialty Services at UTHCT, 11937 US Highway 271, Tyler, Texas 75708 or call (903) 877-8700. EOE. SPEECH-LANGUAGE PATHOLOGIST Clinician needed in Galveston, TX to assess and treat speech, swallowing, and cognitive-linguistic deficits of adults with brain injury. Masters Degree, CCC and Texas license or eligibility for same. Will consider Clinical Fellow. If qualified send resume or call: Cynthia Calhoun, PHR, Director Human Resources, Transitional Learning Center, 1528 Postoffice Street, Galveston, TX 77550, (409) 7971445, Fax: (409) 797-1480, or e-mail: email@example.com EOE. CLINICAL NEUROPSYCHOLOGIST Hope Network Rehabilitation Services, a non-profit organization located in Grand Rapids, Michigan, is seeking a full-time Clinical Neuropsychologist. Duties will include assessment, treatment team consultation, individual and group therapy, and neuropsychological testing. Experience with TBI is a plus. Applicants must possess a Michigan full license for psychology. Excellent benefit package, flexibility and a professional working environment. Please apply in person or send a resume and cover letter to: Hope Network Rehabilitation Services, 1550 E. Beltline, S.E., Suite 100, Grand Rapids, MI 49506, Fax (616) 940-7348 EOE M / F / H / V
BEHAVIORAL PSYCHOLOGIST The duties of this part-time position will include assessment, treatment team consultation, individual and group therapy, behavioral treatment planning, writing and implementation, and staff mentoring on appropriate behavioral approaches. Experience with TBI is a plus. Applicants must possess a Michigan full or limited license for psychology. This part-time position has the possibility of going to full-time. Excellent benefit package, flexibility and a professional working environment. Please apply in person or send a resume and cover letter to: Hope Network Rehabilitation Services, 1550 E. Beltline S.E., Suite 100, Grand Rapids, MI 49506, Fax: (616) 940-7348 EOE M / F / H / V BEHAVIOR SPECIALIST ResCare Premier, a recognized leader in brain injury rehabilitation, is looking for a full-time Behavior Specialist at the Texas Hill Country School in San Marcos, Texas. Masterâ€™s degree with specialization in Behavior Analysis required and Behavior Analyst Certification preferred. 1-2 years experience in field of acquired brain injury or working with children with neurological behavior disorders preferred. Please email resume to: Patrice_adoue@rescarepremier.com or fax to 512.396.2024 EOE, M/F/D/V LIFE SKILLS TRAINERS, FT/PT Learning Services has Life Skills Trainer positions at locations around the country. Visit www.learningservices.org for more information. STROKE COORDINATOR Centinela Freeman Regional Medical Center has an opening for a Stroke Coordinator with the following requirements: California RN license, Minimum 5 years Acute Hospital experience, 3 years
Neuro, Current BLS and BSN or equivilant. Responsible for Case Management (24/7) of the Neurosurgical and Neurological patient from preadmission to post discharge, education of the patient and family, discharge planning, utilization review and post discharge follow-up. Contact Joan Ahern, (310) 419-8228, Joan.Ahern@centinelafreeman.com. NURSE/CASE MANAGER Tree of Life Services, a community based transitional and long term care neurorehabilitation program is seeking a Nurse/Case Manager to facilitate/integrate communication among residents, families, treatment team, outside providers and payer source. Fax or e-mail resume to : (804) 3643559 or firstname.lastname@example.org. MULTIPLE OPENINGS Gulf Coast NeuroRestorative Center, post-acute brain injury center in Dustin, Florida is seeking candidates for the following positions: Occupational Therapist - requires a licensure or pending licensure in Occupational Therapy as regulated and required by the American Occupational Therapy Association and the State of Florida. LPNs - must be a graduate of an accredited School of Nursing. Must have current state licensure and CPR certification. These positions offer the opportunity to be a part of a group of professionals with extensive experience in the field of post-acute brain injury rehabilitation. Excellent salary and benefits package, including paid vacation and holidays; health, dental and vision insurance; and 401k. Experience with a head injury population is desirable, but not required. Contact Diane Gutierrez, NeuroRestorative Associates, Inc., 4500 West Commercial Drive, North Little Rock, AR 72116 email@example.com
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DIAGNOSTIC ISSUES IN TBI IN THE ELDERLY
by Steven R. Flanagan, MD, Wayne A. Gordon, PhD and Mary R. Hibbard, PhD
TBI ACROSS THE LIFESPAN As individuals age, they typically acquire a variety of medical conditions. Some diseases are primarily associated with aging, such as Parkinson’s disease or Alzheimer’s disease, while other conditions typically can occur earlier in life, with a chronic course throughout the life span. Often these diseases have a more detrimental impact on health and quality of life as an individual survives into old age, such as diabetes mellitus or coronary artery disease. Other medical conditions occur with varying frequency throughout the lifespan, with the age at onset potentially impacting course and outcome. Traumatic brain injury (TBI) is one such condition. While TBI is viewed primarily as occurring in youth, it is a common injury sustained by the elderly that presents unique challenges for both health care professionals and society with regards to proper diagnosis, treatment and long-term interventions. Thus, TBI in the elderly is an important issue given the rapidly increasing proportion of the population aged > 65 years, which the United States Census Bureau estimates will increase by 53% by 2020. Advanced medical treatments that increase the survival of individuals injured by TBI, combined with the ever increasing population of older individuals, will lead to both a greater number of older individuals living with a TBI as well as older people sustaining and surviving new injuries, making this an issue that must be addressed today. TBI is a leading cause of disability in the United States, accounting for more than 250,000 hospitalizations per year (CDC, 1999). However, the scope of the problem is far greater as noted by The Center for Disease Control and Prevention, who estimate the prevalence of TBI in the United States at 5.3 million (Thurman, Alverson, Dunn, Huerrero & Sniezek, 1999 ). As staggering as this figure is, it underestimates the true incidence and prevalence of TBI as many individuals do not seek treatment or do so in settings other than a hospital, and their TBIs remain undocumented. Furthermore, individuals as well as their health care providers may fail to associate the patient’s reported symptoms with a TBI, particularly if the injury was considered “mild”, did not result in loss of consciousness or a period of altered mental state. A common misperception, namely that a brain injury that does not result in loss of consciousness is of little consequence with little possibility of future problems with cognition, behavior or other aspects of day-to-day function, may also result in the TBI remaining undiagnosed. The aforementioned scenario is all too often encountered with elderly persons. For example, older individuals who fall, but do not lose consciousness, often appear well initially, only to develop delayed mental sta22
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tus changes weeks later from a slowly expanding subdural hemorrhage, which may become chronic. TBI-related symptoms may be wrongly attributed to the onset of a dementia or to the “normal” aging process rather than to TBI. This mislabeling may lead to either incorrect or inadequate treatment, causing prolonged disability and needless suffering. Compounding the problem of recognizing TBI is the fact that the sequelae are frequently not manifested as obvious focal neurological impairments, such as hemiplegia, but rather as “softer signs” frequently reported by the elderly, e.g. forgetfulness or changes in behavior, and therefore not given much diagnostic salience, further contributing to TBI being under-diagnosed. Not surprisingly, TBI has been referred to as a silent epidemic as many afflicted individuals appear physically well yet have problems with cognition, or emotional control that adversely impact their quality of life. The causes, course, and outcomes of TBI differ depending on the age of onset. Although TBI occurs most commonly in young adults, typically resulting from a motor vehicle related incident, a second peak incidence occurs after the age of 64, most often from falling. In younger age groups, men are twice as likely to sustain a TBI as women, while no gender differences exist in the elderly. Not surprisingly, older individuals have a greater number of medical problems in addition to the TBI, which in part accounts for longer hospitalizations and a greater likelihood of extended stays in skilled nursing facilities following hospital discharge (Langlois et al., 2003) . Throughout the 1990’s, overall TBI-related mortality decreased, due primarily to fewer motor-vehicle related deaths, as well as, improved emergency and acute trauma services. However, this reduction was not seen in all age groups, noted by the surprising 21% increase in mortality in individuals aged ? 75 years during this same period (Adekoya, Thurman, White & Webb, 2002). The exact reason for this increase is not clear, although it cannot be attributed to more severe injuries in the elderly as the increased mortality existed across all injury severity levels, including mild TBI (Susman et al., 2002). This sharp increase in mortality warrants further investigation into factors associated with TBI onset in the elderly, with implementation of preventive programs to reduce its incidence. For example, focused efforts to limit falls or refresher driver courses for the elderly may help to decrease the incidence of TBI in this age group. Furthermore, there needs to be better identification and diagnosis of TBI, which will help to better define the scope of the problem, thereby driving public information and prevention programs. For those elderly individuals with TBI who are discharged from the hospital, long-
term survival is poorer than either age matched non-injured controls (Gubler et al., 1997) or their younger TBI-injured counterparts (Harrison-Felix, Whiteneck, DeVivo, Hammond & Jha, 2004). This is probably a result of a greater number of complications and pre-existing co-morbidities in elderly in addition to mortality arising from secondary organ failure (Perdue, Watts, Kaufman & Trask, 1998; Pennings, Bochulis, Simons & Slazinski, 1993). OUTCOMES AND AGE AT ONSET Although the same pathological findings occur in the brain in both young and old individuals with TBI, advanced age predisposes the elderly to more subdural hemorrhages with delayed changes in mental state and arousal. This is due to the natural expansion of the subdural space that occurs as part of the natural process of cerebral atrophy associated with advancing age. The atrophied brain places the bridging veins at greater risk of disruption from trauma and accounts for the increased incidence of subdural hemorrhages in the elderly. Subdural hemorrhages may expand very quickly, resulting in a rapid decline in neurological function, or they may expand slowly with a more subtle, yet progressive decline in cognitive and physical abilities. Accordingly, subdural hemorrhages may expand over the course of many weeks in older adults following either a seemingly innocuous blow to the head or fall, but over the course of time, mental and physical functions may deteriorate. In many cases of delayed subdural hemorrhages, a traumatic event is not recalled by patients or their loved ones. This may be due to reduced memory, a “trivial” traumatic event that is not recollected, or the fact that the older individual was alone at the time the traumatic event occurred. These facts point to the need to watch for mental deterioration after falls or a seemingly mild blow to the head in the elderly, regardless of the presence or absence of obvious signs of injury at the time of the incident. Short-term outcomes following TBI are also impacted by age at onset. Numerous studies have shown that older individuals with TBI are less able to care for themselves and require longer hospitalizations than their younger counterparts. Furthermore, spouses of older individuals with TBI are more likely than younger individuals to have a number of health related physical or cognitive difficulties of their own that limit their ability to effectively assist or care for a loved one disabled from TBI. Accordingly, older individuals are less likely to be discharged to a community setting. However, considerable caution is required when interpreting this data, as most studies do not examine outcomes beyond a few months post hospital discharge and therefore do not examine changes that occur over a longer course of time. Furthermore, few studies report either pre-morbid functional skills or pre-morbid medical conditions that may impact on outcomes. Individuals with pre-existing disabilities are more likely to have greater problems with mobility and activity of daily living skills than premorbidly non-disabled peers. Without considering these limitations, health care providers may be reluctant to provide intense rehabilitation services to older individuals with TBI, despite the fact that such services have been shown to be very beneficial (Cifu et al., 1996). Cifu et al. reported that elderly patients with TBI improved both cognitively and physically as a result of intensive inpatient rehabilitation, with most individuals discharged to community settings, although they required longer hospitalizations and incurred greater charges. Thus, meaningful recovery is feasible regardless of age of TBI onset; however, the injured brain of an older adult takes longer to recover than in younger adults. This last point is particularly important for Medicare beneficiaries given the Prospective Payment System (PPS) implemented by the Center for Medicare and Medicaid Services (CMS) in 2002. PPS directs a predetermined payment per case to acute care rehabilitation facilities based on a number of variables, including diagnosis and level of disability in lieu of the per diem rate that existed prior to its implementation. However, a recent analysis indicated that PPS may reimburse acute rehabilitation facilities significantly less than their costs for treating elderly patients with TBI (Hoffman, Doctor, Chan, Whyte & Dikmen, 2003). No rationale was provided accounting for this reduced reimbursement. Therefore, the impact PPS may have is to limit how intense and where rehabilitation services are provided to older people with TBI, as many acute facilities may view such treatment as too costly given the reduced reimbursement. The reduction in TBI mortality in young adults will lead to a greater number of individuals with chronic physical, cognitive and affective impairments surviving into old age. Unfortunately, little is known how this will impact medicine and society as very little research has examined this issue. However, evidence suggests that the cognitive impairments sustained in youth as a result of TBI persist life long (Klein, Houx & Jolles, 1996). Klein et al. studied middle-aged men who sustained a mild to
moderate traumatic brain injury decades earlier. Men with a history of TBI performed more poorly on tests of memory and speed than matched healthy controls, with the performance of the men with TBI more closely resembling those of older control subjects. Interestingly, these middle age men with TBI considered themselves as normal and healthy, suggesting that they either had impaired awareness of their poorer cognitive skills or had adopted successful compensation strategies (Klein et al., 1996). Other evidence indicates that individuals with TBI experience greater than expected rates of psychiatric disorders, most commonly depression, anxiety disorders and substance use disorders (Hibbard, Usyal, Kepler, Bogdanyv & Silver, 1998). Hibbard et al. found that 80% of individuals with TBI had experienced at least one psychiatric disorder at some time in their lives, with greater than half of those studies experiencing the onset of their Axis I disorder after the onset of their TBI. The most common disorders identified included major depression, post-traumatic stress disorder, obsessive-compulsive disorder, and panic disorder, alone or in various combination post TBI. Furthermore, substance use disorders occurred more frequently than the general population in those with TBI, both before and after the TBI. Although age was not predictive of development of a comorbid psychiatric disorders post TBI, a pre-TBI psychiatric diagnosis was associated with a greater frequency of post-TBI psychiatric disorders. Interestingly, the time since TBI was unrelated to the development of Axis I disorders, suggesting the importance of routine questioning of patients and their loved ones regarding pre-existing psychiatric problems and ongoing assessment of mood disorders following TBI. Treatments offered in the form of supportive counseling and/or pharmacological interventions are clearly indicated to minimize these secondary challenges of the TBI. Behavioral problems also frequently occur as a result of TBI, and include agitation, impulsivity, and aggression. These problems may be incorrectly attributed to a dementia in elderly with an undiagnosed TBI. Such a situation may occur following a minor blow to the head or a fall where there was either no apparent injury or alteration in mental status at the time of the incident. However, such an event may result in a slowly expanding subdural hemorrhage that leads to altered mental ability days to weeks later. Alternatively, in the case of a mild TBI, a brief period of posttraumatic amnesia following the TBI may be easily overlooked, and therefore ignored as potential reasons for later onset development of cognitive and behavioral problems. ASSESSMENT AND DIAGNOSIS Given the divergent courses of TBI and Alzheimer’s disease, with the former considered at worse a static condition and the latter a progressive deteriorating disease, health care professionals must be vigilant to differentiating symptoms of TBI from dementia, as treatment strategies and outcomes are vastly dissimilar. Older individuals with TBI often retain the capacity to learn and benefit from cognitive therapy if provided the proper environment and support, in contrast to the progressive decline evident in dementia. Appropriate history taking focusing on the time line of symptom development and traumatic events occurring within the past several months, even if they were initially considered inconsequential, will help to determine the true cause of behavioral and/or cognitive changes. Several medical conditions occurring as a direct result of TBI may actually make a proper diagnosis more challenging. For example, progressive loss of cognitive and physical skills following a TBI may be due to an expanding subdural collection, hydrocephalus or depression, rather than an irreversible dementia such as Alzheimer’s disease. All these facts clearly show the need for proper assessments through procurement of appropriate diagnostic tests, particularly neuroimaging studies, when elderly individuals present with changes in mental state. Although clinically significant subdural hemorrhages are easily identified on standard neuroimaging studies, a normal brain MRI or CT scan does not definitively rule out a TBI, as such tests may be insensitive in detecting some of the neuronal shear injuries that result from TBI. Shearing forces result in diffuse axonal injury (DAI), which is a microscopic process that may not be easily detected by standard imaging studies, particularly CT. This is an important consideration as DAI frequently accounts for impaired cognition and behavioral problems after TBI. Neuropsychological testing is particularly effective in differentiating cognitive impairments resulting from a TBI from those occurring due to dementia (Bigler, Rosa, Schultz, Hall & Harris, 1989). More specifically, Bigler et al. demonstrated that individuals with Alzheimer’s disease have greater impairments in learning and memory than those with TBI. This data also suggested that individuals with TBI retain the ability to learn; an extremely important aspect in both their rehabilitation and potential to lessen the adverse BRAIN INJURY PROFESSIONAL
impact impaired cognition has on their lives. The impact TBI has on the general health of an individual has only recently been examined. While it may be anticipated that problems directly attributable to a TBI may be long lasting, such as difficulties with balance, spasticity or seizures, other non-central nervous system problems have not traditionally been felt to be associated with a brain injury. However, recent evidence strongly suggests that individuals with TBI have significantly greater number of selfreported chronic health care complaints that are not easily attributable to a brain injury than their non-injured peers. Hibbard, Usyal, Sliwinski and Gordon (1998) reported that regardless of age, individuals with TBI had more selfreported complaints related not only to their neurological health, but also to their endocrine, genitourinary and musculoskeletal systems as well as more frequent sleep disturbances than their non-injured peers. In a follow up study, Breed, Flanagan and Watson (2004) reported similar findings, noting that individuals with TBI have more self-reported complaints regarding their neurological, endocrine, musculoskeletal, and sleep health than their age matched non-injured peers. Interestingly, age was a less potent predictor of self-reported health care problems than TBI, suggesting that these health care problems persist throughout the lives of individuals after their injury. A potential explanation for the greater frequency of non-neurological health problems are the concomitant injuries to other systems at the time of trauma. Regardless of the cause, these studies strongly suggest that health care providers inquire about a multitude of health issues when treating individuals with TBI, despite the time elapsed from their injury. CONCLUSIONS Older individuals with TBI differ from younger adults in several ways, including cause of injury, mortality, functional outcomes, length of hospitalizations, and disposition after hospital discharge. However, despite the poorer functional outcomes for older adults reported in many studies, they clearly benefit from aggressive rehabilitation interventions, which often results in their return to the community rather than a long term care facility. Despite this potential for significant recovery, the older brain requires longer periods of rehabilitation, which translates into greater health care costs. These higher costs may adversely impact the intensity and location of where rehabilitation services are provided for the elderly, causing a future of uncertainty. Individuals with TBI have higher than expected incidence of psychiatric disorders as well as chronic cognitive impairment that are to likely persist throughout their lives. In addition to neurological and psychiatric conditions, other chronic medical problems afflict adults with TBI, including those not directly related to central nervous system trauma. Lastly, little is known regarding the interaction of increasing numbers of people living with TBI, an issue that will become increasingly important as scientific advances ensure more individuals survive serious injuries combined with the aging of America. Clearly there remains a need for additional focused research. 24
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ABOUT THE AUTHORS Steven R. Flanagan, M.D.: Dr. Flanagan is Vice-Chairman and an Associate Professor in the Department of Rehabilitation Medicine, Mount Sinai School of Medicine, New York, NY. He is Medical Director of Brain Injury Rehabilitation at both Mount Sinai Hospital and Park Terrace Care Center. He is co-project director of the NIDRR-funded New York-Traumatic Brain Injury-Model System and has both published and lectured on many topics in brain injury rehabilitation. Wayne A Gordon, Ph.D.: Dr. Gordon is the Jack Nash Professor of Rehabilitation Medicine and Associate Director of the Department of Rehabilitation Medicine at Mount Sinai School of Medicine, New York, NY. He is currently the principle investigator of two NIDDR-funded TBI grants (NY-Traumatic Brain Injury-Model System and the Research and Training Center for TBI Interventions) and has published extensively in the fields of traumatic brain injury and stroke. He has received numerous awards and honors for both his clinical and research work in brain injury. Mary R. Hibbard, Ph.D.: Dr. Hibbard is a Professor of Rehabilitation Medicine at Mount Sinai School of Medicine, New York, NY. She is an American Board of Professional Psychology Diplomat and is a specialty board member of the American Board of Rehabilitation Psychology. Dr. Hibbard has been an active researcher for NIDRR-funded research and currently serves as the Training Director for a postdoctoral fellowship program and an American Psychological Association accredited clinical internship program in Rehabilitation Psychology and Neuropsychology. She has published widely in the fields of clinical neuropsychology, rehabilitation psychology traumatic brain injury and stroke.
REFERENCES Adekoya, N., Thurman, D.J., White, D.D., & Webb, K.W. (2002). Surveillance for traumatic brain injury deaths – United States, 19891998. MMWR, 51(10), 1-14. Bigler, E.D., Rosa, L., Schultz, F., Hall, S. & Harris, J. (1989). ReyAuditory Learning and Rey-Osterrieth Complex Figure Design performance in Alzheimer’s disease and closed head injury. Journal of Clinical Psychology, 34(6), 1013. Breed, S.T., Flanagan, S.R. & Watson, K.R. (2004). The relationship
between age and the self-report of health symptoms in individuals with TBI. Archives of Physical Medicine and Rehabilitation, 85(4 Suppl 2), S61-67. CDC. (1999). Traumatic brain injury in the United States: A report to Congress. Atlanta, GA: US Department of Health and Human Services, CDC, National Center for Injury and Prevention and Control. Cifu, D.X., Kreutzer, J.S., Marqitz, J.H., Rosenthal, M., Englander, J. & High, W. (1996). Functional outcomes of older adults with traumatic brain injury: A prospective, multicenter analysis. Archives of Physical Medicine and Rehabilitation, 77(9), 883-888. Gubler, K.D., Davis, R., Koespell, T., Soderberg, R., Maier, R.V. & Rivara, F.P. (1997). Long-term survival of elderly trauma patients. Archives of Surgery, 9, 1010-1014. Harrison-Felix, C., Whiteneck, G., De Vivo, M., Hammond, F.M. & Jha, A. (2004). Mortality following rehabilitation in the Traumatic Brain Injury Model Systems of Care. NeuroRehabilitation, 19(1), 45-54. Hibbard, M.R., Usyal, S., Kepler, K., Bogdanyv, J. & Silver, J. (1998). Axis I psychopathology in individuals with traumatic brain injury. Journal of Head Trauma Rehabilitation, 13(4), 24-39. Hibbard, M.R., Uysal, S., Sliwinski, M., Gordon, W.A. (1998). Undiagnosed health issues in individuals with traumatic brain injury living in the community. Journal of Head Trauma Rehabilitation, 13(4), 47-57. Hoffman, J.M., Doctor, J.N., Chan, L., Whyte, J. & Dikmen, S. (2003). Potential impact of the new Medicare prospective payment system on reimbursement for traumatic brain injury inpatient rehabilitation. Archives of Physical Medicine and Rehabilitation, 84(8), 1165-1172. Klein, M., Houx, P.J. & Jolles, J. (1996). Long-term persisting cognitive sequelae of traumatic brain injury and the effect of age. Journal of Nervous and Mental Disease, 184(8), 459-467. Langlois, J.A., Kegler, S.R., Butler, J.A., Gotsch, K.E., Johnson, R.L., Reichard, A.A. (2003). Traumatic brain injury-related hospital discharges: Results from a 14-state surveillance system. MMWR Surveillance Summary, 52(4), 1-20. Perdue, P.W., Watts, D.D., Kaufman, C.R. & Trask, A. (1998). Difference in mortality between elderly and younger adult trauma patients: Geriatric status increases risk of delayed death. Journal of Trauma, 45(4), 805-810. Pennings, J.L., Bachulis, B.L., Simons, C.T. & Slazinski, T. (1993). Survival after severe brain injury in the aged. Archives of Surgery, 128(7), 187-193. Susman, M., DiRusso, S.M., Sullivan, T., Risucci, D., Nealon, P. & Cuff, S. (2002). Traumatic brain injury in the elderly: Increased mortality and worse functional outcome at discharge despite lower injury severity. Journal of Trauma, 53(2), 219-223. Thurman, D.J., Alverson, C.A., Dunn, K.A., Huerrero, J. & Sniezek J.E. (1999). Traumatic brain injury in the United States: A public health perspective. Journal of Head Trauma Rehabilitation, 14(6), 602-615.
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CHANGING THE APPROACH TO FALLS IN TBI
by Helen Carmine, MSN, CRRN, CRNP; Mary Pat Murphy, MSN, CRRN; Cheryl Ambush-Mansfield, MBA, Keith Robinson MD While falls pose a serious health risk for elderly individuals, it is unclear what the incidence and effect is for individuals with brain injury aging in the community. Researchers have found that other disability groups including those with stroke, multiple sclerosis and Parkinson’s disease are at higher risk for falling than people among the general population (Morris et al., 2000; Nyberg, et al., 1995; Cattaneo, et al., 2002). This article will review an organized approach for the identification of those at risk for falling and interventions within a post-acute brain injury setting. A thorough evaluation can reveal hazards within the environment as well as physical changes that might be amenable to treatment. Findings from other populations have provided a foundation for determining at risk conditions, activities and environmental conditions that may lead to an increase in falls and their complications for individuals with brain injury.
Review of Literature There is a dearth of literature regarding the incidence of falling, falling risk and the resulting hospitalization within the brain injury population, but other neurological and gerontologic literature provides a basis for research and the development of interventions. According to a collaborative study by Pfizer and Rand (2000), falls are among the most common cause of morbidity, mortality and immobility in older Americans, resulting in 13% of deaths in those individuals who are 65 and older. Falls are common among elders living in the community. Approximately one - third of community dwelling elders fall annually, with 5 percent of those falls resulting in hospitalization. (Rubenstein et al., 1994; Tinetti, et al., 1988). Similar data on morbidity, mortality and hospitalization rates as the result of falls in community based traumatic brain injured adults is not available for review. The community-based individual determines what is or is not a fall, and this determination is usually based on the injury or outcome that requires hospitalization or visit to a doctor. Recent research in the aging population suggests that when a fall does not result in injury, the fall is most likely not reported (Pfizer and Rand, 2000). Repeat falls eventually affect healthy outcomes and cause life alterations for that individual. Even those falls that do not result in injury may lead to increased concern from care providers and family and could result in transfer to another setting or institution. In a study by Hyndman et al. (2002), researchers identified the circumstances and common location of falls for individuals who had sustained a stroke. Most falls occurred in the homes while the individual was walking or during transfers. Individuals cited loss of balance, getting their foot stuck, misjudgment and difficulty performing transfers as reasons why they fell . Healthy elderly community dwellers participated in a study that looked at the 26
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interaction of personal characteristics and environmental issues. Collisions in the dark, failing to avoid temporary hazards, preoccupation with temporary conditions, frictional variations between shoes and floor coverings and unfamiliar environmental situations contributed to increased incidences of falling. Successful elimination of these factors is likely to be closely related to an individual's perception that situations in the environment are correctable, their motivation to undertake changes in the environment, and a desire to integrate changes into daily activities (Connell and Wolf, 1997). According to Pfizer and Rand (2000), “a systematic evaluation to identify the underlying cause of the fall, treatable risk factors and a treatment plan can help discern treatable conditions, reduce or prevent recurrent falls, and improve general health”. Risk factors for falls in the elderly include cognitive impairment, disabilities to the lower extremities, diminished palmomental reflex, abnormalities of gait and balance and foot problems. Falls were most likely to occur during a hazardous activity or when there were hazards in the environment (Tinetti, 1988). Mobility deficits including postural control, balance difficulties, arthritis and altered gait (Graafmans, et al., 1996; Campbell, 1989) pose as risk factors in the elderly. Cognition and attention are also thought to impact performance, postural control and righting reactions in the elderly and Parkinson’s population, potentially resulting in falls (Hauer, et al., 2002; Brown et al., 2002; Morris et. al, 2000). Motor tasks including ambulation are often adversely impacted by cognitive task demands when performed simultaneously in a neurological population (Haggard et al., 2000). A study by Rapport et al. (1998) with participants from a brain injury unit suggests the influence of motor and sensory impairments are moderated by executive functioning. Participants with intact executive functioning are less likely to act in ways which result in falls. Other factors include the presence of previous falls, fear of falling, cardiac conditions including arrhythmia, orthostatic hypotension, depression, dizziness, visual and auditory impairments, polypharmacy and restraints (Rubenstein, 1994; Graafmans, et al. 1996). Specific fall risk assessment tools have been developed and are reported in the literature. A comprehensive review and analysis of multiple fall risk assessment scales was most recently published in 2001 and provides descriptions and comparisons for the interested reader (Perell, et al., 2001). Factors in assessing selection of a standardized risk assessment scale include both the psychometric properties (reliability, validity, sensitivity and specificity), as well as the time and ease of administration. The Conley Scale is a quick and easy basic screening scale that can even be implemented in busy hospital settings where the in depth individual reviews outlined in this article may not be viable (Conley, 1999). The development of individualized and group exercise programs directed
Falls Risk Factors in Traumatic Brain Injury Community Residents
COGNITIVE RISK FACTORS
MEDICAL RISK FACTORS
Polypharmacy and substance abuse
Cardiovascular: hypotension, syncopal episodes
Decreased safety awareness
Impaired motor planning
Metabolic- Diabetes mellitus or insipidus
Inability to self monitor
Impaired judgment and problem solving
elderly participants in residential settings. Tinetti (1994) also investigated whether the risks of falling could be reduced by modifying or eliminating risk factors. Using a combination of approaches including medication adjustment, behavioral instruction, and exercise, the risk of falling among elderly in the community was reduced. Exercise, balance training, resistance training and increased physical activity have been shown to decrease the likelihood of falls in the elderly as well as for those with stroke and Parkinson’s disease (Hirsch, et al., 2003; Shumway-Cook et al., 1997; Province et al., 1995). A summary provided by the National Center for Injury Prevention and Control (2002) noted that utilizing intervention research is one of the most effective ways to reduce the incidence of falls. Strategies should include: combining personalized attention to treatment and environmental changes to reduce falls; including exercise programs and medication assessment; and educating staff in fall risk factors.
Post-Acute TBI Community Based Dwellers and Falls Risk
Sleep Disturbances PHYSIOLOGICAL RISK FACTORS
AT RISK ACTIVITIES OF DAILY LIVINGECOLOGICAL VALIDITY
Household activities: laundry, groceries
Motor Planning Difficulties
Ambulation in home, community
Motor Speed and Reaction time delay
Recreational activities including speed, balance, righting reactions
Diminished transfer skills to bed, chair, surface, car
Refusal/Forget to Use assistive devices
Sensorimotor changes Spasticity/Tone Problems ENVIRONMENTAL RISK FACTORS Place of Residence- Apt, Second Floor, Stairs, Curbs Lighting, Glare Flooring; Material, Uneven; Non-Slip Surfaces Outside Terrain/Community Access Ramp/Curbs/Pavements
This article attempts to provide a descriptive overview of the long term residential brain injury population at risk for falls including extrinsic and intrinsic risk factors, a demographic description of the residential population including data on fallers and non-fallers and strategies to minimize the falls. The definition of a fall is “an event that results in a person coming to rest unintentionally on the ground or other lower level, not as a result of a major intrinsic event or overwhelming hazard” (Clark, et al., 1993). Fallers and non-fallers within a community-based residential program were tracked over a 12-month period. Over the past few years, these individuals with brain injury had experienced an emergence of chronic health problems related to neurological changes. These changes also may potentially increase fall rates in the community residing TBI population. Falls risk factors in the elderly and in those populations with chronic neurological disabilities living in the community were identified from the literature. Table 1 represents a list of potential falls risk factors present for the traumatic brain injury community dwellers. Specifically, the risks were broken down into five categories. They include Cognitive, Medical, Physical, and Environmental risk factors as well as At Risk Activities of Daily Living. After a fall occurs, the physical therapist and nurse examine the factors within the categories to determine what might have contributed to the client’s fall in an effort to prevent recurrence. The cognitive, medical and physiological factors may be identified for medical or therapeutic intervention. With modifications, strategies and increased awareness, the “at risk activities of daily living” and environmental factors might also affect the rate of falls.
Mobility Equipment and its safe use
TBI Participant Characteristics
Access in Bathroom, Kitchen, Storage area to items
The population studied was a sample of 54 individuals that included both non-fallers and fallers, all of whom resided in a residential treatment program for greater than five years. These individuals with brain injury resided in either supervised apartment settings or residential home settings. This sample experienced moderate to severe traumatic brain injury, with 20% of the sample experiencing a decline in some aspect of neurological function over the past two years. The majority of these subjects were male (82%) with an average age of 45 years. The average time post injury for this population was 83 months, with an average coma length of 57 days (Table 2). Other co-morbid conditions identified in this population included abnormal blood pressure, balance difficulties, muscle joint stiffness, urinary control/incontinence, weight gain, sleep disorders, spasticity and changes in tone, seizures and metabolic disorders including diabetes mellitus and diabetes insipidus. Most of these medical conditions have also been associated with falls in the elderly in previous studies (Table 3).
Entrances- Floor plates, Doorways Inappropriate Footwear Lack of Safety Railings/Grab bars Bed height Spills Inappropriate or Unavailable Corrective Lens
TABLE 2 FEATURE
Comparisons of Fall Group to Non Fallers ALL CLIENTS
CLIENTS WITH 13 FALLS
CLIENTS WITH < 3 FALLS
Age @ Injury
Time since Injury
Avg. Coma Length
Apartments Residential Home Setting Male Female Average Age Work*
14 40 82% 18% 45 yrs. 76%
1 11 18% 4% 44 yrs. 100%
1 15 20% 9% 43 yrs. 77%
12 14 44% 5% 41 yrs. 63%
* Work is defined as competitive, supported/sheltered, and volunteer placements
at increasing strength, balance, coordination, progressive resistance training and strengthening as well as modifying the home environment may reduce the risk of falls. A study by Jensen et al. (2002) identified the benefits of a multi-factorial intervention program to reduce falls and fall related injuries in
Reported Health Issues
Abnormal Blood Pressure/Syncope
Muscle and joint stiffness
Headache and pain
Hospitalization/ER visit in last year
Diabetes mellitus & Diabetes insipidus
BRAIN INJURY PROFESSIONAL
In addition to these co-morbid conditions, other neurological and physiological changes were identified at admission and/or within the past 24 months. These included increased neglect and sensory changes; increased frequency of seizures, decreased trunk control, changes in balance and righting reactions, dystonia (including increased tone and spasticity), dizziness and urinary incontinence. In addition, some new onset cognitive changes were noted within this group including diminished attention and concentration, slowed processing and occasional disorientation and confusion. Similar to the data available from the aging general population and those groups with physical disabilities recently studied, the presence of these conditions, as well as the new onset of physiological changes, can result in an increased fall risk.
The Interdisciplinary Evaluation A systematic evaluation identified the underlying causes of each fall and treatable risk factors, with a revised, individualized treatment plan implemented to reduce future falls and promote positive health and treatment outcomes. The interdisciplinary intervention team completing the systematic review of client falls included the Director of Quality Management, physical therapists, occupational therapists, nurses, behavioral therapists, clinical specialists, psychologists and facilitators. A second tier review occurred with the physiatrist, neuropsychiatrist, neurologist and/or internist, if medical recommendations for treatment modifications were recommended by the initial evaluation team. After a fall occurred, the physical therapist and nurse examined the factors that might have contributed to the individual’s fall in an effort to prevent recurrence. The cognitive, medical and physiological factors were identified for medical and therapeutic intervention. With modifications, strategies and increased awareness, the “at risk activities of daily living” and environmental factors might also affect the rate of falls. A review of the circumstances and location of the falls were analyzed (Table 4) in this population over the course of a year. Of the 54 clients living in the long-term residential settings, 28 individuals had reported or observed falls. According to the individuals who had fallen, over half of the reported falls occurred in their home; and 150 falls occurred in the community. Rather than describe location, 79 falls were described by circumstance surrounding the fall (seizure, during transfer, loss of balance). Identifying the environmental issues impacting falls becomes very important in the multi-factorial approach.
Specific Fall Related Data REPORTED LOCATION/ACTIVITY AT TIME OF FALL
ment and risk reduction programs were defined upon admission. After each fall event, treatment modifications, environmental modifications, therapy, exercise treatment plans and behavioral interventions were identified. Repeat falls resulted in an exhaustive reassessment of the individuals’ intervention program, with resulting modifications in their care, treatment plan, environment, and/or staff support and strategies, along with family/caretaker input. Treatment approaches that have emerged from the intensive interventional falls risk review are identified below. These have been effective in decreasing the risk of falls or repeat falls in the community based TBI population: • Interviewing the client regarding the fall episode. Obtain information on what the client was attempting to achieve at the time of the incident. Determine environmental and situational factors that may have contributed to the recent event. • Identifying potential baseline risk factors through initial and ongoing therapy, nursing and medical assessments. • Assessing for possible brain injury related complications and/or co morbid conditions requiring special attention related to mobility such as changes in cognition, judgment, etc. • Reevaluating client medications for side effects, dose related effects and drug interactions. • Modifying behavioral strategies to address cognitive risk factors including impulsivity, poor judgment and problem solving issues that may lead to falls in the home and the community. • Encouraging individual and group exercise activities targeting improved strength and mobility. • Modifying the environment: lighting, flooring, client location, work setting, etc. • Selecting risk controlled leisure activities/and or modifying to decrease falls risk • Modifying/selection of new equipment: anti-tippers, call bells, door alarms and signs. • Client education and increased client awareness. • Staff ‘buy-in’ through education and support. • Increased monitoring of repeat fallers with altered staffing patterns; close supervision; one to one supervision. • Providing family/caretaker education regarding transfers, mobility issues, activities of daily living skill performance, and community based leisure strategies directed at fall prevention. Outcome measures currently in process include assessing the effectiveness of the program based on fall incidence, number of repeat fallers and fall related injuries. Continued study will hopefully further validate the effectiveness of this multi-factorial, intervention-based approach in reducing fall incidence and injury in residential community based programs.
Similar to other populations at risk, individuals with traumatic brain injury experience multiple risk factors, leading to a potentially higher risk of falls. Cognitive, medical, physiological and at risk activities have been identified through our preliminary analysis. A more comprehensive and methodological research-based approach is required to further validate characteristics of brain injury fallers and non-fallers, and the success of the evaluative approach to fall risk prevention and interventions. Individuals aging with brain injuries would greatly benefit from a collaborative large-scale study addressing falls in various brain injury care settings. Defining fall events and brain injury client fallers’ characteristics across settings as well as multiple factors that may lead to fall experiences may aid in the development of learning tools and client strategies directed at prevention and risk reduction. These strategies may effectively address brain injury fall prevention and may minimize costly co-morbidities and hospitalizations, while maintaining the client’s functional independence in the community setting.
Loss of balance
27 total number of falls in year=464 MOBILITY AID AT TIME OF FALL
No mobility aid
No WC seatbelt used
Fall Prevention Strategies and Approaches Once the evaluations were complete, the interdisciplinary team implemented the multi-factorial fall prevention/reduction strategies and approaches. The goal of the systematic review was to prevent initial and repeat falls, intervene with specific appropriate treatment interventions and maintain/support the individuals with brain injury capacity for residential living and a maximum level of independence. Through the intervention program, individual treat28
BRAIN INJURY PROFESSIONAL
ABOUT THE AUTHORS
Helen Carmine MSN, CRRN, CRNP currently serves as the Clinical Director of ReMed Supported Living System. Ms. Carmine has presented regionally and nationally at the Association of Rehabilitation Nurses and other national conferences. She has also published articles and chapters on rehabilitation topics. Ms. Carmine currently serves as a Board Member of the Greater Philadelphia ARN Chapter. Mary Pat Murphy, MSN, CRRN currently serves as the Vice President of Clinical Services at ReMed. Ms. Murphy oversees the inpatient and outpatient services for post acute brain injury programs. Ms. Murphy has presented regionally and nationally at the Association of Rehabilitation Nurses Conferences and has worked with individuals with brain injury for 15 years and rehabilitation for 20 years.
Cheryl Ambush-Mansfield, MBA has over ten years of experience in the healthcare field. She received a BA in Sociology with a concentration in Healthcare from the University of Delaware and a MBA in Health Administration from Temple University. She has been with ReMed for the past five years and is currently the Assistant Director of Quality Management. Keith Robinson, MD has completed a Fellowship program in Cognitive Neurology at the University of Pennsylvania Medical Center and has over 15 years experience in Rehabilitation Medicine. Dr. Robinson currently serves on staff at the University of Pennsylvania School of Medicine where he provides ongoing attending coverage and instruction of residents and medical students in rehabilitation medicine on inpatient, ambulatory care and consultation services. Dr. Robinson has presented and published hundreds of articles and chapters on rehabilitation topics. Dr. Robinson also serves as the Medical Director for ReMed.
Brown L. Sleik R. Winder T. Attentional demands for static postural control after stroke. Archives of Physical Medicine and Rehabilitation. 83 (12):1732-5, 2002. Campbell A. Borrie M. Spears G. Risk factors for falls in a community-based prospective study of people 70 years and older. Journal of Gerontology. 44(4):112-7, 1989. Cattaneo D. De Nuzzo C. Fascia T. et al., Risk of falls in subjects with multiple sclerosis. Archives Physical Medicine Rehabilitation. 83(6): 864-867, 2002. Clark R. Lord S. Webster I. Clinical parameters associated with falls in an elderly population. Gerontology, 39:117-23, 1993. Conley D. The challenge of predicting patients at risk for falling: development of the conley Scale. Medsurg Nursing. 8(6): 348355. 1999. Connell B. & Wolf S. Environmental and behavioral circumstances associated with falls at home among healthy elderly individuals. Archives of Physical Medicine and Rehabilitation. 78(2):179-86, 1997. Graafmans W. Ooms M Hofstee H. et al., Falls in the elderly: a prospective study of risk factors and risk profiles. American Journal of Epidemiology. 143(11): 1129-36. 1996. Haggard P. Cockburn J. Cock J et al., Interference between gait and cognitive tasks in a rehabilitating neurological population. Journal of Neurology, Neurosurgery and Psychiatry. 69(4):479-86, 2000. Hauer K. Marburger C. Oster P. Motor performance deteriorates with simultaneously performed cognitive tasks in geriatric patients. Archives of Physical Medicine and Rehabilitation. 83(2): 217-23, 2002. Hirsch M. Toole T. Maitland C. et al., The effects of balance training and high-intensity resistance training on persons with idiopathic Parkinson’s disease. Archives of Physical Medicine and Rehabilitation. 84(8): 1109-17, 2003. Hyndman D. Ashburn A. Stack E. Fall events among people living with stroke in the community: circumstances of falls and characteristics of falls. Archives Physical Medicine Rehabilitation. 83(2): 165170, 2002. Jensen J. Lunden-Olsson L. Nyberg L. et al., Fall and injury prevention in older people living in residential care facilities. Annals of Internal Medicine. 146 (10): 733-741, 2002. Lord S. Allen G. Williams P. et al. Risk of falling: predictors based on reduced strength in persons previously affected by polio. Archives Physical Medicine and Rehabilitation. 83(6): 757-763, 2002. Morris M.E. Iansek R. Smithson F. et al., Postural instability in Parkinson’s disease: a comparison with and without concurrent task. Gait Posture. 12(3): 205-16, 2000. Nyberg L. Gustafson Y. Patient falls in stroke rehabilitation. A challenge to rehabilitation strategies. Stroke. 26:838-42, 1995. Perell K. Nelson A. Goldman RL. Luther SL Prieto-Lewis N. Fall risk assessment measures: An analytic review. Journals of gerontology Series A: Biological Sciences & Medical Sciences. 56A(12): M761-M767. Province M. Hadley E Hornbrook M. et al., The effects of exercise on falls in elderly patients. A preplanned meta-analysis of the FICSIT Trials. Fraility and Injuries: Cooperative Studies of Intervention Techniques. Journal of American Medical Association. 272(17):1341-7. 1995. Rapport L. Hanks R. Mills S. et al., Executive functioning and predictors of fall in the rehabilitation setting. Archives of Rehabilitation Medicine. 79(2):629-33, 1998. Rubenstein L. Josephson K. Robbins A. Falls in nursing homes. Annuals of Internal Medicine. 121:442-51.1994. Shumway-Cook A. Gruber W. Baldwin M. et al., The effect of multidimensional exercises on balance, mobility and falls risk in community-dwelling older adults. Physical Therapy. 77(1):46-57, 1997. Tinetti ME, Baker DI, McAvay G, et al., A multifactorial intervention to reduce the risk of falling among elderly people living in the community. New England Journal of Medicine. 331(13):821-27, 1994. Tinetti, M. Speechley, M. Ginter, S. Risk factors for falls in community dwelling elderly. New England Journal Medicine. 319(26): 1701-7, 1988. www.pfizer.com/download/health/pubs_acove_new_falls.pdf. Pfizer and Rand study: Falls and mobility disorders in older adults. 2000. www.cdc.gov/ncipc/factsheets/falls.htm National Center for Injury Prevention and Control. Falls among Older Adults: Summary of Research Findings.
The Texas Hill Country School specializes in working with middle and high school students with mood disorders, psychotic disorders, acquired brain injury, and a host of other developmental, neurological, and psychological difficulties. The Texas Hill Country School enrolls both residential and day students.
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Traumatic Brain Injury Serving the community for two decades, Beechwood has expanded its TBI offering to encompass broad neurological services as well as new Behavioral Remediation and Late Adolescent programs. In addition to TBI, we serve individuals with brain damage due to: • Anoxia/Hypoxia due to drowning, heart attack, drug overdose, alcohol poisoning, anesthesia errors, etc.
• Electric shock/lightning strike • Degenerative diseases • Infectious diseases • Early stage moderate dementias • Tumors • Brain surgeries • Many neurological disorders
• Stroke For information and admissions, call 1-800-782-3299. Our facilities are adapted to accommodate all levels of accessibility.
A Community-Integrated Brain Injury Program An affiliated service of Woods Services, Inc. www.beechwoodrehab.org
Langhorne, PA • Bensalem, PA BRAIN INJURY PROFESSIONAL
Aging with Traumatic Brain Injury: Long Term Outcomes
by Angela Colantonio, PhD, Graham Ratcliff, DPhil, Susan Chase, MA and Lee Vernich, MSc INTRODUCTION Over the past few decades life expectancy for persons with disabilities has increased significantly across a wide range of conditions including persons after traumatic brain injury (TBI). Technological advances have greatly improved survival rates, and it is estimated that each year more than 80,000 Americans survive hospitalization for TBI and are discharged with resultant disabilities. The estimated prevalence of persons living with TBI in the United States is 5.3 million, yet little is known of the effect of aging on these individuals (Thurman et al., 1999). The issue of aging and traumatic brain injury is particularly important as the highest incidence occurs in the young adult population. Thus, persons surviving injury may be faced with decades of living with a disability. In addition, the prevalence of TBI also increases in persons over 75 years of age primarily due to falls (Kraus et al., 1984). Population trends indicate that this is the most rapidly expanding segment of our population. Hence, TBI among the aged is also an increasingly important public health issue. There are, therefore, many reasons to study aging with traumatic brain injury. At the time of injury, persons with brain injury and their families seek an indication of prognosis. Research on long-term health issues can provide some concrete information even though it is at a group level. Such information may be utilized in determining settlement payments, for instance, for persons involved in motor vehicle accident litigation. Research can identify the unmet needs of persons aging after TBI and provide a basis for services from a life course perspective. Our knowledge of long term complications can potentially inform how best to deliver rehabilitation services occurring closer to the time of injury in order to minimize adverse outcomes (Vogenthaler et al., 1989; Colantonio et al., 2004a; Colantonio et al., 2004b). Over the last decade there has been a dramatic increase in studies addressing the long-term outcomes of persons with TBI. This paper, however, focuses on some key findings of a large comprehensive study conducted in the United States that focused on a very broad range of outcomes with a very long follow-up period. The first and second authors were co-principal investigators of this study. This investigation utilized the conceptual framework of the World Health Organization International Classification of Impairment, Disability and Handicap (WHO, 1997) to describe outcomes. This model underwent several updates since the initial funding of our study and this publication such that it is now called the International Classification of Function, Disability and Health. The more updated terminology is used in this paper from the updated model and we have structured our outcomes accordingly: Body Functions and Structures, Activities and Participation. In addition, we provide information on the use of rehabilitation services in the follow-up period. METHODS The study utilized a retrospective cohort design. Potential participants were identified from the medical records of a large 200-bed comprehensive rehabilitation treatment facility in Pennsylvania. This facility has been providing 30
BRAIN INJURY PROFESSIONAL
treatment for brain-injured persons for many years as part of a comprehensive rehabilitation program and was the main source of rehabilitation for adults with TBI for a very large geographic area. To identify brain-injured persons from medical records, we used specific ICD-8 and ICD-9 codes (Council on Clinical Classifications, 1980) for head injury (800-801.9; 803-804.9; 850854.9) that include skull fractures and intracranial injuries. This range includes concussion; cerebral laceration and contusion; subarachnoid, subdural, and extradural hemorrhage following injury; other unspecified intracranial hemorrhage following injury; and intracranial injury of other and unspecified nature. All records that had head injury ICD codes were reviewed for accuracy of diagnosis and severity of head injury. Individuals who had non-traumatic injuries or spinal cord injury in addition to head trauma were excluded from the sample since they represented a distinctly different group. Participants had to be at least 14 years of age at the time of injury to be eligible for the study. We examined all consecutive records of former patients discharged from the rehabilitation hospital during the years 1974 through 1984. In addition, we selected data from two years from 1988 and 1989 to include clients from a more recent time frame reflecting more current rehabilitation practices. This record review resulted in 642 eligible participants. A detailed description of the sample is found elsewhere (Steadman-Pare et al., 2001). We traced 600 (93%) of the 642 eligible individuals identified through medical record review. Of these, 128 persons were deceased. Predictors of mortality in our study will be published elsewhere (Ratcliff et al., in press). All surviving persons found in our catchment area (n=390) were sent an introductory letter describing the study and requesting their participation. An interviewer telephoned individuals to arrange for a home interview. Informed consent was obtained at the time of the interview. In the great majority of cases, an informant nominated by the participant was also interviewed. Informant interviews were designed to provide corroborative information. Informants were nominated by the participants as someone who knew them best. We interviewed 286 persons with TBI. For some interviews, we obtained only partial information and a small percentage of interviews were done by telephone. The data used in this study is therefore based on information predominantly obtained from 286 survivor interviews and 20 informant interviews (n=306). We obtained information about the injury from the medical records and obtained follow-up information through a face to face interview primarily. Under the title body structure, we discuss our findings of reported health conditions, for activity, we report limitations in activities of daily living (ADLs) and instrumental activities of daily living (IADLs), and for participation we focus primarily on employment outcomes. RESULTS Study sample description Most of our sample was male (70%) which is typical of the TBI population. The mean age at follow up was 44 years. The follow-up period ranged from 7 to 24 years post injury with a mean of 14.2 (SD 4.4) years post injury. Less than 4% of our group was non-white with African Americans comprising
Long term health conditions COHORT % YES OF 292
<45 AT FOLLOW-UP % YES OF 183
45+ AT FOLLOW-UP % YES OF 109
Trouble getting to/staying asleep
Allergies of any kind
Problems with vision
Problems with hearing
Troubles with stomach/digestive system
High blood pressure
Heart or circulation problems
Epilepsy or seizures
Paralysis of any kind
If female, gynaecological problems
Tumour or cancer
Kidney condition or disease
Stroke/effects of stroke
Figures 1 and Table 1 Reprinted with permission and modified from Colantonio et al., 2004b)
Prevalence of selected self-reported chronic conditions for TBI vs. the US adult general population 30
% of population
25 20 15 10 5 0
High Blood Pressure
Percentage of Participants who Require Assistance for Activities of Daily Living – ADLs n=306 40
% of participants
30 25 20 15 10 5 0
most of the minority population, which is consistent with the population of the area from which the sample came. Persons with moderate to severe injury were interviewed. Our data showed that 72% of persons had loss of consciousness of greater than one day. Based on scores of the Rivermead Story Recall, approximately half of the participants had significant memory impairment at follow-up. A more detailed description of our population is described elsewhere (Steadman-Pare et al., 2001).
Health Conditions Our study assessed chronic health conditions, which is described in detail elsewhere (Colantonio et al., 2004b) with a questionnaire used in a national study of aging (Clarke et al., 2002). Table 1 shows the selfreported chronic health conditions of respondents ranked in order of prevalence in the cohort. The most common symptom was nervousness and being tense, which was consistent across age groups. This is not a surprising finding and is consistent with the mental health consequences after TBI. The next most reported condition was arthritis, indicating problems of a musculoskeletal nature. It was reported at a much higher frequency than in another study of TBI volunteer participants (Hibbard et al., 1998). In addition, when we examined the prevalence by age group, we found that arthritis was much more common than expected in the young adult population. The odds ratio was 2.7 (95% CI: 1.94 – 3.75) for arthritis in younger survivors aged 25-44 years. This finding could be interpreted as a sign of accelerated aging. Arthritic changes may have been accelerated due to the effects of the initial injury as motor vehicle crashes may have affected joints. Long periods of inactivity or imbalanced forces on the joints as a result of contractures or other musculoskeletal injuries may have accelerated joint degeneration. It is also not clear if this finding is related to heterotopic ossification that also occurs in persons with severe TBI. Other authors have proposed theories related to neuroendocrine changes to explain this finding (Hibbard et al., 1998). Clearly, this finding needs to be investigated further with measures beyond self-report. Clinicians may, however, need to address more systematically conditions related to aging in middle-aged clients. Also notable were long term problems with sleep, which have also been found in previous studies (Hibbard et al., 1999). This study shows that problems with sleep which are highly prevalent in the more acute or early post-acute stages of recovery (Castriotta and Lai, 2001; Rao and Rollings, 2002) are still a common complaint in the very long term. This problem again has not been investigated beyond the use of self-reported measures. However, it needs to be systematically addressed as problems with sleep affect fatigue and other symptoms that impact on the course of recovery. Figure 1 displays the information in relation to data from comparable questions from national surveys (CDC, 1999). This figure provides an idea of how some conditions exceed that of the general population although the age/sex distribution is not entirely comparable between the two groups. Problems with vision and hearing affected at least one fifth of participants and increased with age. The impact of these sensory changes should be taken into account in both assessment of treatment of long-erm TBI survivors. Activity Participants who could not perform various activities of daily living and instrumental activities of daily living independently were coded as having limitations in these domains. In our study, we found that a high percentage of persons were independent in activities of daily living (Figure 2). For instance, less than 5% of the study population was unable to eat, transfer, bathe, and dress themselves, and these were mainly people living in institutions. As would be expected, more activity limitations were found in the performance of instrumental activities of daily living (Figure 3). For instance, 27-30% of the population was not able to manage money, go shopping or get to places out of walking distance independently. These were areas of the highest level of activity limitation worthy of long term planning for families and rehabilitation professionals. Among those over 65 with limitations in instrumental activities of daily living, , the effect was even more pronounced (see Figures 2 and 3). Participation Issues In our study sample, the largest numbers of persons were living with a spouse at follow up (40%). The next highest percentage of persons were living alone, followed by living with parents (17%). Figure 4 indicates that, compared to the time of initial injury, there is a significant drop in employment. In our study, only 29% of people were working full time. As might be expected in an older population, 11% reported being retired at follow-up but most of the retirees reported that they had retired because of their brain injury. This highlights the importance of asking this question upon assessment to sort out if retirement in TBI survivors is indeed voluntary. We found that with increasing age, there were fewer individuals working. There were no women employed in the 55-65 age category for instance, and there was a sharp drop in employment in this age group as well for males. The issue of productive BRAIN INJURY PROFESSIONAL
Percentage of Participants who Require Assistance for Instrumental Activities of Daily Living – IADLs n=306
80 60 50
Activity Limitations - IADLs
activity many years post injury is of great importance. For individuals who have not been able to work many years post injury, engagement in meaningful activity is often one of the most important goals long term. While most people indicated that they received rehabilitation services post discharge (67.6%) we do not know how much of those services were specifically directed to promote employment and other productive activity. Use of health services after discharge from in-patient rehabilitation The most frequently used service over the follow-up period was physical therapy (48%) and to a lesser extent, occupational therapy (25%) and speech therapy (22%). A smaller proportion visited a chiropractor (13.8%). When asked about use of rehabilitation services in the last year, 12.2% reported using physical therapy, 8% had seen a chiropractor, 14% used mental health services and 6.2% used adult day care. A large percentage of participants (42%) reported being re-hospitalized, with one fifth also receiving additional in-patient rehabilitation. It was difficult however to construct a history of the extent of service use over the followup period as it is subject to recall bias. More information on activity, participation and health service use are found elsewhere (Colantonio et al., 2004a) Quality of Life As part of our study, we inquired about Quality of Life using a very simple instrument: “On a scale of 1 to 10, how would you describe your quality of life” (Steadman-Pare et al., 2001). In addition, we examined what factors had the most influence on this outcome. These included sociodemographic (age, gender) characteristics, injury severity, residual cognitive function (as measured by the Trail Making Tests [Reitan & Wolfson, 1985]) and physical function, self rated mental health (taken from the MOS SF-36) (Ware, 1993) and measures of participation from the London Handicap Scale (“ Does your health a)stop you from getting around b)stop you from looking after yourself c)limit your work or leisure activities d)stop you from getting on with people e)stop you understanding the world around you f) Are you able to afford the things you need?”) (Harwood et al., 1994). The availability of emotional support and availability of help with daily tasks was also assessed in relation to quality of life. We found strong bivariate relationships with all handicap/ participation, health and function variables assessed. Most types of social support, education and gender were also associated with perceived quality of life. Of particular relevance was the finding that mental health was the strongest predictor of perceived QOL post-TBI. Depression is a common consequence post-injury with great impact on perceived well-being. Self-rated health, gender (females having higher quality of life), participation in employment and leisure, and availability of emotional support were also the main significant predictors in multivariate analyses. These findings also support the needs for meaningful activity, continued support long term, as well as the assessment of gender specific needs (Steadman-Pare et al., 2001). Conclusion This paper aimed to provide some findings from a study that investigated outcomes up to 24 years post traumatic brain injury in adults. We believe our sample of participants, although from one center, is representative of the TBI population that would have benefited from in-patient rehabilitation. Clearly, these findings indicate the necessity for a long-term approach to care planning in this client group. This, however, contrasts with what is 32
50 % of participants
BRAIN INJURY PROFESSIONAL
Reprinted from Colantonio, et al., (2002a)
typically provided, namely an intensive period of rehabilitation post-injury followed by relatively few continuing services long term. Productive activity long term, which impacts on quality of life, is an enormous area for intervention. In addition, our study suggests evidence for accelerated aging among TBI survivors and as such should be monitored as they age. Survivors therefore experience the physical and sensory changes of aging in addition to existing and potentially worsening cognitive abilities. In a previously published paper based on preliminary data of our study, a large number of participants in fact reported that problems of mobility were among the most important in addition to those related to cognition (Dean, Colantonio, Ratcliff & Chase, 2001). We realize that we have not adequately covered the contributions of other investigators on this topic for the purposes of this review. Notwithstanding, there is still much we need to learn about the natural history of aging with TBI. ACKNOWLEDGEMENTS Sources of funding: This project was supported by the NINDS (NS347402) and NIA (F33 AGO5856-01A1), Washington County Head Injury Foundation and the Toronto Rehabilitation Institute. We are truly grateful to our study participants and staff who made this research possible.
ABOUT THE AUTHOR Dr. Colantonio is the Saunderson Family Chair in Acquired Brain Injury Research at the Toronto Rehabilitation Institute, Canada’s largest adult rehabilitation hospital and is an Associate Professor with tenure in the Department of Occupational Therapy, Public Health Sciences and Graduate Department of Rehabilitation Science at the University of Toronto. She received her Ph.D. in Epidemiology and Public Health from Yale University. She received her M.Sc. in Community Health and B.Sc. in Occupational Therapy from the University of Toronto. Dr. Colantonio’s research has primarily focused on the epidemiology neurological conditions and disability in aging or aged populations. Dr. Graham Ratcliff is a practicing neuropsychologist at HealthSouth Harmarville Rehabilitation Hospital and researcher at the University of Pittsburgh. Dr. Ratcliff has led research teams investigating the effect of aging on cognition in both health and cognitively impaired adults. He has been funded extensively by NIH. Ms Chase is a licensed speech language pathologist with extensive research and clinical experience. She is currently Executive Director of Working Order in Pittsburgh, which is a non-profit organization providing an integrated work setting for persons with disabilities. Ms Vernich is a senior research coordinator at the Research Services Unit in the Department of Public Health Sciences at the University of Toronto.
REFERENCES Castriotta, R.J., Lai, J.M. Sleep disorders associated with traumatic brain injury. Arch Phys Med Rehabil. 82: 1403-6, 2001. Clarke, P., Marshall, V., Black, S.E., Colantonio, A. Well-being following stroke in Canadian seniors: findings from the Canadian Study of Health and Aging. Stroke. 33: 1016-21, 2002. Colantonio, A., Ratcliff, G., Chase, S., Kelsey, M., Vernich, L. Long term outcomes after moderate to severe traumatic brain injury. Disability and Rehabilitation. 5: 253-261, 2004a. Colantonio, A., Ratcliff, G., Chase, S., Vernich, L. Aging with traumatic brain injury: long term health conditions. International Journal of Rehabilitation Research. 3: 209-214, 2004b. Council on Clinical Classifications. International Classification of Diseases, 9th Revision, Clinical Modification. Ann Arbor: Commission on Professional and Hospital Activities, 1980. Dean, S., Colantonio, A., Ratcliff, G., Chase, S. Client perceptions of problems many years after
traumatic brain injury. Psychological Reports. 86: 653-658, 2000. Harwood, R.H., Rogers A., Diskinson E., Ebrahim S. Measuring handicap: the London handicap scale, a new outcome measure for chronic disease. Qual Health Care, 3:11-16, 1994. Heaton R.K., Grant I., Mathews C.G. Comprehensive Norms for an Expanded Halstead-Reitan Battery. Florida, Odessa: Psychological Assessment Resources Inc. Hibbard, M.R., Uysal, S., Sliwinski, M., Gordon, W.A. The undiagnosed health issues in individuals with traumatic brain injury living in the community. J Head Trauma Rehabil. 13:47-57, 1998. Kraus, J.F., Black, M.A., Hessol, N. et al. The incidence of acute brain injury and serious impairment in defined populations. Am J Epidemiol. 119: 186-201, 1984. Rao, V., Rollings, P. Sleep disturbances following traumatic brain injury. Current Treatment Options in Neurology. 9: 7787, 2002. Ratcliff, G., Colantonio, A. Escobar, M., Chase, S., Vernich, L. (in press). Predictors of post-acute survival after moderate to severe traumatic brain injury. Disability and Rehabilitation. Reitan, R.M., Wolfson, D. The Halstead Reitan Neuropsychological Test Battery. Tempe (AZ) Neuropsychological Press, 1985. Steadman-Pare, D., Colantonio, A., Chase, S., Vernich, L. Factors associated with perceived quality of life many years after traumatic brain injury. J Head Trauma Rehabil. 16:1-15, 2001. The National Health Interview Survey, CDC (1999) Series 10, No.200, 1996. Thurman, D., Alverson, C., Dunn, K., Guerrero, J., Sniezek, J. Traumatic brain injury in the United States: a public health perspective. J Head Trauma Rehabil. 14: 602-15, 1999. World Health Organization (WHO). ICIDH-2: International Classification of Impairment, Activities and Participation. Geneva: WHO, 1997. Ware, J.E. SG-36. Health Survey Manual and Interpretation Guide. Boston: The Health Institute, New England Medical Centre, 1993. Vogenthaler, D.R., Smith, K.R, Goldfader, P. Head injury, a multivariate study: predicting long term productivity and independent living outcome. Brain Injury. 3: 1369-1385, 1989.
2005 SEPTEMBER 29-October 2 – American Congress of Rehabilitation Medicine, A chieving, Evidence-Based Rehabilitation, Chicago, Illinois. Contact: (317) 915-2250, e-mail: firstname.lastname@example.org, web: www.acrm.org. 22-24 – 18th Annual Brain Injury MedicalLegal Conference presented by the North American Brain Injury Society, Amelia Island, Florida. Contact: (800) 321-7037, e-mail: email@example.com, web: www.nabis.org. 22-24 - NABIS Presents: Brain Injury, New Science, Best Practices and Future Innovations, Amelia Island, Florida. Contact: (800) 321-7037, e-mail: firstname.lastname@example.org, www.nabis.org. SEPTEMBER 13-16 - Finding a Cure for Brain Injury: Improving Outcomes. Johnstown, Pennsylvania. Contact: (434) 220-4824, e-mail: email@example.com, web: www.nbirtt.org.
2006 APRIL 27-30 – AOTA's 86th Annual Conference & Expo, Charlotte, NC. Contact: (301) 6522682, e-mail: www.aota.org.
JUNE 13-17 – CMSA's 2006 Conference & Expo, Gaylord Texan Resort & Convention Center, Dallas/Ft. Worth, TX. Contact: (501) 2252229, e-mail: firstname.lastname@example.org, web: www.cmsa.org. SEPTEMBER 19-21 – NABIS Brain Injury Conference of the Americas, Hyatt Regency, Miami, FL. Contact: email@example.com, web: www.nabis.org. OCTOBER 19-21 – Fifth Interurban ABI Conference, Parkway Place Convention Centre, Peterborough, ON, Canada. Contact (705) 741-1172, e-mail: firstname.lastname@example.org. 20-22 – Pacific Coast Brain Injury Conference, Hilton Vancouver Metrotown Burnaby, BC Canada. Contact: (604) 9442652, e-mail: email@example.com, web: www.pcbic.org. 25-28 – 26th Annual Conference of the National Academy of Neurophyschology, Marriott San Antonio Rivercenter, San Antonio, TX. Contact: (303) 691-3694, e-mail: firstname.lastname@example.org, web: www.nanonline.org. NOVEMBER 5-6 – 26th Annual Neurorehabilitation Conference on TBI, Stroke and Other Disorders, Braintree, MA. Contact: (781) 3482113, e-mail: email@example.com.
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[ professional viewpoints ] Commentary by Candace Gustafson, RN, CBIS-CE, Marcia Cooper & Marvel Vena of the Fairhaven Institute This commentary on aging with brain injury (BI) is offered from a different perspective. The Fairhaven Institute for Brain Injury was envisioned to add the critical voices and expertise of those with brain injuries to advance the care and quality of life of people affected by brain injury. We recognize, as have others, that there are significant long-term sequelae that appear after the initial stage of recovery from brain injury. These symptoms may be subtle and under-recognized as a trend leading to decline. Many individuals with TBI make significant and often-dramatic improvement after their injury, at times returning to full independent living. Along with these individuals, others have learned to make necessary changes in life style to accept and live with their "new self". Some survivors of TBI have neither had successful outcomes nor adjusted well to their new situation. Unfortunately, both groups may again be confronted with significant changes in their health and well-being as the effects of aging arise. As survivors of brain injuries, Fairhaven Institute members are in the unique position of continued personal acquaintance with numerous individuals with brain injury, from the time of injury to well past their course of rehabilitation and provision of services. Such relationships have been maintained as long as 1020 years or more post injury. In recent years, we have observed that many people with brain injuries have developed new physical and cognitive symptoms that are ominously premature for their chronological age. These are symptoms one might expect in people beginning in their late fifties and progressing into the seventies, or older. Our perception is that these symptoms are occurring decades prematurely. There are certain clusters of behaviors and physical disabilities that are commonly accepted in the elderly, such as diminished mental agility and cognition, dysphagia, increases of secondary illness and injury, demyelinization, dystonia, hearing loss, vision loss, spasticity, hormonal issues, metabolic disorders, osteoarthritis, tremors, osteoporosis, and fatigue (CDC). People do not make a big deal about these changes among those in their later years. However, when encountered in a younger population of people with BI, such signs are alarming. We cannot laugh off the senior moments. It is becoming more apparent to us that a number of people who have sustained BI are exhibiting symptoms of what we perceive to be accelerated aging. Our emerging consensus is that this cluster of symptoms, which outwardly is consistent with premature aging, may constitute a post brain injury syndrome (PBIS). We are writing as individuals who have sustained BI and work in diverse arenas in the field of brain injury. Our long and active involvement helps us stay uniquely sensitive to certain needs of 34
BRAIN INJURY PROFESSIONAL
our community. Our interest is that this phenomenon be addressed through education, research, and clinical intervention. We suggest a multi pronged approach to defining and potentially ameliorating some of the concerns around PBIS. Additional research and education are needed for clinicians, families and individuals following brain injury. This can best be achieved through the development of partnerships that involve all stakeholders in providing long-term medical services, psychosocial services and community supports appropriate to maintaining both physical and psychological wellbeing.
" The true reason in my situation just seems to be bad luck, bizarre surgery disadvantages and just the fact that the more you become injured the chances of being injured again increases. After two brain injuries, coma and multiple seizures, I finally began to see that problems can more easily happen as my age gets older." Tony Lazzaretti age 39 "TBI or ABI is a fact of life in many lives that can complicate, change, diminish, or destroy. When it became a part of my life, I chose to change. I needed to highlight new areas and develop new strengths and talents. I was fairly successful in doing that but was unaware that a silent enemy was about to make it known that all of my new wonderful accomplishments would be at risk of being lost. The culprit was simply AGE.â€? Jean Ann McLaughlin age 54 What is really happening to the group of people with brain injuries who have long since completed rehabilitation and are now trying to live their lives? We are these people - active, alive and adapted to our new lives post- BI. We continue to implement and modify the strategies that many of us learned in rehabilitation throughout our everyday lives. This requires daily vigilance and determination. Our observations and experience suggest that even with these efforts, there may be palpable emerging symptoms consistent with PBIS. We believe that in this world of the 8minute doctor visit and the 50 minute hour, standard preventive healthcare protocols are not always provided to individuals with disabilities. We appreciate the inordinate pressure to address the immediate problem, while recognizing the well-established value of preventive care. We believe these prevention protocols can be
modified and applied as useful tools for reducing risk of secondary illness, injury and PBIS in the BI community, and that the standard preventive protocols may need to be provided at an earlier age. The obvious advantage in providing earlier wellness education and preventive protocols is to prevent further disability and crisis, when possible. A critical piece often marginalized in todayâ€™s healthcare climate, is that of developing a client-practitioner relationship that will facilitate recognition and treatment of symptoms before they become problematic. Creating an atmosphere of trust can be mutually satisfying, leading to effective dialogue to address concerns more completely and efficiently. Taking responsibility for ones own wellbeing and health is a nationwide struggle. Our society and individuals are the losers when we place personal well-being outside ourselves. The fact that people with BI and other disabilities are at risk for secondary illness and injury means we must address these realities directly. However, when a person is thrust into the worlds of medicine and rehabilitation they are endeavoring to find themselves and navigate an alien system. Forced to become acquainted with a new self, it is a struggle to look forward at future possibilities for an independent life. Frequently, a result of BI is loss of confidence and lack of clarity in what can be expected for the future. Certainly, with the time limitations and restraints that are placed on the availability of rehabilitation, this is a significant dilemma. This quandary may leave the individual confused and disempowered. Yet, in the end, the client is directly responsible for his or her personal well-being. The best possible rehabilitation prepares individuals with BI to be realistic about their disability and its implications over time. Everyone is familiar with the natural process of aging. What we hope to call attention to is the experience of those people who have sustained BI and present with premature symptoms of aging.
Rai reh nea foll tha pro ind solu
ABOUT THE AUTHOR Candace Gustafson, RN, CBIS-CE, Marcia Cooper and Marvel Vena have all been active advocates for individuals with brain injuries for approximately 15 years. They have served on state and national levels and have participated in a variety of venues including research, public policy, individual advocacy and support group facilitation. Thanks for assistance and contributions from: Hanna Greenberg PhD., Theresa Rankin, Larry Zachary MD, Tony Lazzaretti, Jean Ann McLaughlin and others involved with the Fairhaven Institute.
REFERENCES Centers for Disease Control National Center for Healthy Statistics, Healthy People 200 Review, 1998-99.
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