In this article, we discuss the taxonomy associated with the four major disorders of consciousness (DoC): coma, vegetative state or unresponsive wakefulness syndrome, minimally conscious state, and post-traumatic confusional state. We briefly review the history of each disorder and then provide operational definitions and diagnostic criteria for each one. We rely heavily on recently released practice guidelines and, where appropriate, identify knowledge gaps and discuss future directions to advance DoC research and practice.

BackgroundDisorders of consciousness (DoCs) after severe brain injury are considered to be conditions with dire prognosis. Despite the accumulating evidence, inpatient rehabilitation is often denied by payers referring to the Medicare/Medicaid criteria, under the assumption that such patients will not “actively” participate in therapy or make “measurable improvements.”ObjectiveThis study aimed to report on the effectiveness and efficiency of a specialized inpatient DoC rehabilitation program based on measurable clinical parameters.MethodsA retrospective cohort study was conducted. The cohort comprised 137 patients with DoC admitted to a specialized acute inpatient rehabilitation program between January 2014 and October 2018. Patients were categorized as having been admitted at the acute stage (<=28 days post-injury), subacute stage (29–365 days following a traumatic brain injury (TBI) or 29–90 days following a non-TBI), or chronic stage (>365 days following a TBI or >90 days following a non-TBI). Outcomes included changes in level of consciousness (based on the Coma Recovery Scale–Revised (CRS-R), while also acknowledging scenarios beyond those captured by the CRS-R via Individualized Qualitative Behavioral Assessment and team consensus); Functional Independence Measure (FIM) levels; achievements in decannulation and initiation of oral diet; and time to those achievements.ResultsThe rates of emergence from a minimally conscious state were 90, 62, and 18% among patients admitted at the acute, subacute, and chronic stages, respectively. Among patients who emerged, 100, 85, and 67%, respectively, had measurable FIM scores. Approximately 60 and 20% of patients at the acute and subacute stages, respectively, required moderate assistance or less in transfer/communication/eating/grooming/upper body dressing by the time of discharge from Phase I admission. The decannulation rates were 94, 67, and 17%. The oral diet initiation rates were 70, 23, and 6%. The time to reach these achievements lengthened as chronicity increased. There was a weak positive correlation (rs = 0.308) in the case of decannulation and a strong positive correlation (rs = 0.606, both p < 0.01) in the case of oral diet between days since injury on admission and days to the achievement after admission. Patients with TBI and hypoxic brain injury had comparable recovery rates when admitted at the acute and subacute stages.ConclusionSpecialized intensive inpatient rehabilitation is crucial and time-sensitive for functional recovery from DoC caused by TBI and hypoxic–ischemic brain injury. Specific goals and different outcome measures need to be developed to appraise the benefits of acute inpatient rehabilitation for DoC.

Behavioral assessment remains the cornerstone of the clinical evaluation of disorders of consciousness (DoC). Because the basic approach to these evaluations has been extensively reviewed elsewhere, this article focuses on special considerations in the behavioral assessment of patients with a DoC. All therapy disciplines (physical therapy/occupational therapy/speech language pathologist) have a significant role to play and other staff and family members should also be encouraged to share their observations. Finally, the assessment with standardized scales should be supplemented by qualitative behavioral observations as well as, when appropriate, an individualized quantitative behavioral assessment.

Introduction Spasticity is one of the most frequent neurological impairments affecting persons with disorders of consciousness (DoC). If left untreated, it can mask signs of consciousness by inhibiting one's ability to interact with the environment. The lack of information about spasticity specific to patients with DoC may result in insufficient or even inappropriate treatment. Objective To report spasticity characteristics and management in a large dedicated DoC rehabilitation program. Design Retrospective chart review. Setting An inpatient rehabilitation hospital. Participants Patients admitted to the DoC rehabilitation program from 1 January 2014 to 31 October 2018. Main Outcome Measurements Spasticity characteristics; impact of interventions on spasticity as well as other clinical measures. Results A total of 146 patients were included, of whom 95.2% were affected by spasticity; 52.7% had spasticity affecting all four limbs. The most commonly affected muscle groups were shoulder internal rotators (72.6%) in the upper extremity and ankle plantar flexors (59.8%) in the lower extremity. The more commonly affected muscle groups were also more spastic (R = 0.993 and 0.989 in the upper and lower extremity, respectively; P < .01). Atypical posture patterns were also commonly observed, making positioning difficult. Chemoneurolytic injections (botulinum toxin and/or phenol) were performed in over 69.9% patients, and 26.7% had intrathecal baclofen (ITB) pump placement. All patients received individualized physical modalities and therapies. With focal managements, systemic spasmolytic medications, including enteral baclofen, were reduced by at least 50.0%, which appeared to be associated with improvements in the level of consciousness. Conclusions Almost all DoC patients were affected by spasticity, often to a moderate or severe degree. Extensive use of focal spasticity interventions allowed for weaning of systemic spasmolytic medications, which seemed to result in improvements in the level of consciousness.

Follow up what we will offer in this article about disorders of consciousness. You know really that this book is coming as the best seller book today. So, when you are really a good reader or you're fans of the author, it does will be funny if you don't have this book. It means that you have to get this book. For you who are starting to learn about something new and feel curious about this book, it's easy then. Just get this book and feel how this book will give you more exciting lessons.

BACKGROUND:The American Academy of Neurology recently emphasized the importance of communicating with patients' families to better reflect patient values in clinical care. However, little is known about how decisions about continuing rehabilitative care made by family caregivers and healthcare providers working with minimally conscious patients are informed by conceptualizations of consciousness and moral status.METHODS:We explored these issues in interviews with 18 family caregivers and 20 healthcare professionals caring for minimally conscious patients. Data were analyzed using thematic content analysis.RESULTS:Results suggest that family members and healthcare professionals share similar views of what consciousness is ("being there") and what it is indicated by ("a look in the eyes," and/or an "ability to do"/agency). They also share a belief that the presence (or "level") of consciousness does not determine whether rehabilitative care should be discontinued. Rather, it should be determined by considerations of suffering and well-being. Providers were more likely to view suffering as rationale for discontinuation of care, while family members viewed suffering as an indicator of and motivator for potential recovery.CONCLUSION:Findings can help optimize family-provider communications about minimally conscious patients by acknowledging shared assumptions and interpretations of consciousness, as well as key areas where perspectives diverge.Implications for rehabilitationFamily and professional caregivers' interpretations of consciousness and suffering are implicated in decisions about continuing rehabilitation for minimally conscious patients.Family members and healthcare providers both rely to some extent on non-observable evidence to evaluate consciousness, which may be an adaptive and philanthropic response to clinical uncertainty.Acknowledging shared assumptions and interpretations of consciousness, as well as diverging perspectives, can help to optimize family-provider communications.

This chapter reviews issues central to the rehabilitation of persons with a disorder of consciousness (DoC). After a discussion of the nomenclature and taxonomy of DoC, the bulk of the chapter is focused on the assessment and treatment of these patients. An emphasis is placed on the issues and modalities that are directly relevant to clinicians practicing in this field. However, newer approaches and technologies are briefly introduced so that clinicians will be aware of them. There are also brief discussions of epidemiology, outcomes, ethical issues, and systems of care.

Fischer and Truog propose deemphasizing questions pertaining to consciousness in the care of patients with disorders of consciousness (DoC) (Fischer and Truog 2017). They critique the conceptual ba...

To describe the impact of vestibular dysfunction on the assessment of consciousness in two patients with post-traumatic disorders of consciousness (DOC).

PM&RVolume 8, Issue 9S p. S235-S235 Neurological Rehabilitation Poster 230 Unconventional Dosing of Amantadine in a Patient with Traumatic Brain Injury: A Case Report Vandana Sood MD, MS, Vandana Sood MD, MS Baylor College of Medicine, Houston, Texas, United StatesSearch for more papers by this authorAbana F. Azariah MD, Abana F. Azariah MD Baylor College of Medicine, Houston, Texas, United StatesSearch for more papers by this authorKatherine O'Brien PhD, Katherine O'Brien PhD Baylor College of Medicine, Houston, Texas, United StatesSearch for more papers by this authorJoanne Byars MD, Joanne Byars MD Baylor College of Medicine, Houston, Texas, United StatesSearch for more papers by this authorCraig DiTommaso MD, Craig DiTommaso MD Baylor College of Medicine, Houston, Texas, United StatesSearch for more papers by this authorSunil Kothari MD, Sunil Kothari MD Baylor College of Medicine, Houston, Texas, United StatesSearch for more papers by this author Vandana Sood MD, MS, Vandana Sood MD, MS Baylor College of Medicine, Houston, Texas, United StatesSearch for more papers by this authorAbana F. Azariah MD, Abana F. Azariah MD Baylor College of Medicine, Houston, Texas, United StatesSearch for more papers by this authorKatherine O'Brien PhD, Katherine O'Brien PhD Baylor College of Medicine, Houston, Texas, United StatesSearch for more papers by this authorJoanne Byars MD, Joanne Byars MD Baylor College of Medicine, Houston, Texas, United StatesSearch for more papers by this authorCraig DiTommaso MD, Craig DiTommaso MD Baylor College of Medicine, Houston, Texas, United StatesSearch for more papers by this authorSunil Kothari MD, Sunil Kothari MD Baylor College of Medicine, Houston, Texas, United StatesSearch for more papers by this author First published: 24 September 2016 https://doi.org/10.1016/j.pmrj.2016.07.264Citations: 2Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat No abstract is available for this article.Citing Literature Volume8, Issue9S2016 AAPM&R Annual Assembly AbstractsSeptember 2016Pages S235-S235 RelatedInformation

“His wife as he knows her is gone,” the caller said to Pat Robertson of the 700 Club,” and the friend is “bitter at God for allowing his wife to be in that condition, and now he's started seeing another woman.” “This is a terribly hard thing,” Mr Robertson said… . “I hate Alzheimer's. It is one of the most awful things, because here's the loved one, this is the woman or man that you have loved for 20, 30, 40 years, and suddenly that person is gone.” [emphasis added]. “I know it sounds cruel,” he continued, “but if he's going to do something, he should divorce her and start all over again, but to make sure she has custodial care, somebody looking after her.” When Mr Robertson's co-anchor on the program wondered if that was consistent with marriage vows, Mr Robertson noted the pledge of “till death do us part,” but added, “This is a kind of death.” [1] No doubt, Alzheimer disease (AD) has a profound and sweeping impact on every aspect of an individual's life and marital relationship. The threads of one's life history, as evidenced through memories, can unravel, particularly as the disease progresses. New memories are hard to form. Existing relationships often experience upheaval and change, and undoubtedly grief. But equating AD as a kind of death? Is this just the expression of one man's opinion, or is this a commonly held belief? Unwittingly, Robertson waded into treacherous terrain with this caller and reopened debates about moral status, personal identity, and the very criteria of personhood in the context of brain injury. Is the wife no longer a person because she cannot remember her history? If so, what do we make of the fact that she still has a history, a lifetime built on relationships, shared experiences, and expressed values: as a wife, a daughter, a friend, perhaps as a sister, mother, and grandmother, a member of a spiritual community, volunteer, professional woman, and even at one time a caregiver for others? What do we make of the fact that she is still breathing, likely has an emotional life at some level, can experience pleasure and pain, and perhaps recognizes a loving, familiar presence even if she cannot remember a name or the particulars of the relationship? Are people with profound memory loss, from any cause, no longer regarded as living? As persons? Do they have less moral status, fewer protections, fewer rights? These questions are not unique to AD but occur in varying degrees with traumatic brain injuries (TBI), strokes, brain tumors, encephalitis, and developmental disabilities, and essentially any other injury or disease that affects the brain. For people working in rehabilitation, it is not uncommon to hear family members say that their loved one “feels like a different person” after acquired brain injury. Author Cathy Crimmins is especially eloquent on this score in her award-winning book about her experience with her husband's TBI, Where Is the Mango Princess? [2]. In the situation that provoked the call to Robertson, we have few details. Perhaps the wife is now living in a nursing care facility. Perhaps she is incontinent and needs assistance for dressing, bathing, and eating. Perhaps she is no longer capable or interested in physical intimacy, or her husband feels more like a parent or caretaker than a marital partner. For some partners, physical intimacy no longer feels appropriate or desirable. The husband undoubtedly misses their companionship. I would like to thank the following commentators with expertise in brain injury, dementia, psychology, and mindfulness who have agreed to share their perspectives on these difficult issues: Sunil Kothari, MD, Wendy Heller, PhD, Debjani Mukherjee, MD, and Darby Morhardt, MSW, LCSW. As always, we welcome your comments or suggestions for future columns. “Personhood” and “personal identity” can be distinguished both philosophically and clinically. In TBI, the paradigmatic situation in which questions of personhood arise is that of the vegetative and, sometimes, minimally conscious states. In particular, it is asked if there is a threshold below which these patients might no longer be considered “persons,” and, if so, how this might affect the nature and extent of our moral obligations to them. Issues of personal identity do not seem to be relevant in this context. The question is not whether a patient is the same person that he or she was before but instead whether he or she can still be considered a person at all. In contrast, issues of personal identity often arise in less severe brain injuries in which the patient retains consciousness but undergoes a change in personality. Personhood is not in question here, but identity is: not whether the patient is a person but rather whether he or she is the “same” person that he or she was before the brain injury. For instance, a person who was considered shy and reserved before a brain injury might become talkative and open, perhaps to the point of making those around him or her uncomfortable. Articulating criteria for personhood and identity are often the focus of academic discussions of these concepts. For example, many commentators have proposed that consciousness should be considered a “threshold” criterion of personhood; patients in a vegetative state would not be considered persons according to this standard. Suggested criteria for personal identity have been more varied and contested. One standard often proposed is continuity of memory. According to this criterion, a person who is unable to remember much of his or her own past might no longer be considered the same person that he or she had been. Discussions of personhood and personal identity, however, are not confined to philosophical and clinical commentary. Families also ponder these same questions, albeit in a less explicit and conceptually sophisticated manner. It is even likely that families have their own criteria, however implicit, of what constitutes personhood or personal identity, criteria that they rely on to make their own judgments as to whether, for example, they consider their injured family member the “same” person that they were before. This “folk philosophy” and its influence on the judgments made by families is yet to be adequately studied. Investigations may find that there is as much disagreement among the public about criteria of personhood or identity as there is among philosophers and clinicians. For example, some families may believe that a person who cannot remember most of his or her own past is no longer the same person he or she had been. For others, the question of personal identity may not even arise in this situation as long as the person's temperament and ways of interacting with others remain the same, regardless of losses in memory of specific people or events. Understanding the basis for families' judgments about identity can be quite valuable for clinicians. In certain cases, it might even be helpful to explore with the family the possibility of revising their “criteria” of personal identity, thereby enabling them to reconsider the situation in a way that relieves distress. For example, family members might discover, through conversation with a clinician, that their perception of having “lost” their loved one is driven by an underlying belief that a person's identity is a function of the integrity of his or her memory. The clinician might then suggest the possibility that a person's identity might be based on other criteria, for instance, temperament, which may not have changed. The reflections prompted by these discussions might allow the family to reframe the situation and reconsider if they have truly “lost” their loved one. We should be careful in attributing the family's distress entirely to the fact that the patient is perceived as being different. The family members who I have spoken with are often more distressed by perceived “negative” changes in the patient's personality than they are by the fact of change itself. It is often not so much that the patient is “different,” as it is that the differences are thought to be undesirable (eg, when the patient is perceived as being more irritable or less empathetic). In fact, in those unusual cases in which family members believe that the patient has changed for the “better,” there is, in my experience, rarely any associated distress. This is despite changes in personality that are equal in magnitude to the more typical cases in which patients are perceived to have changed “for the worse.” Distinguishing specific changes from the fact of change itself can have practical implications. It allows discussions between patients and their families to move beyond general comments about being a “different person” to more productive conversations about concrete behaviors. How helpful would it be for any of us to be told only that we are “different”? The problem is compounded because, as discussed in the following section, patients often do not share the perception that there has been a fundamental change in their identity. As a result, conversations between patients and their families often get bogged down in disagreements as to whether or not patients have changed rather than more helpful discussions about specific traits that are a source of conflict. In my experience, it is unusual for patients themselves to believe that they are “different” than they had been. Although they may acknowledge specific changes, they rarely perceive that these differences constitute a fundamental change in their identity. There are several possible explanations for this phenomenon. Neurologically, it is well known that brain injury, especially TBI, directly affects the areas of the brain that mediate awareness. As a result, patients tend to not recognize changes, especially in their temperament and personality. Even when changes are recognized, patients may not believe that these changes have any implications for their sense of identity. This may be because of a neurally mediated need of organisms to maintain a sense of continuity of identity, or it may simply be that, psychologically, we do not tolerate radical discontinuities in our sense of self over time. When unexpected change does occur, the “default” response may be to come up with narratives to reintegrate those changes into a coherent and unified account of our lives. Regardless of the cause or causes, patients frequently do not experience the change in identity perceived by those around them. This fact raises a concern, one especially relevant to professional discussions of this topic (such as this one). There is a risk that the very framing of the issue in terms of changes in identity accepts, at the outset, the perspective of the family. That is, to engage in a discussion of the philosophical and clinical implications of changes in identity after brain injury is to assume that there has been a significant change in the patient's identity, which is exactly what most patients themselves deny. This is not necessarily a problem as long as it is recognized that, when we explore these questions, we are not necessarily addressing issues of deep concern to the patients themselves. The dissociation between “first-person” and “third-person” perspectives, the perception and experience of patients and their families, however, does not just have implications for academic discussion. There are practical consequences as well. In particular, an emphasis on changes in identity about who the patient was risks diverting attention and care from the patient as the patient is now. Patients have communicated to me their perception that the standard of recovery set for them (spoken or unspoken) is their preinjury personality. This is often experienced by the patient as, in effect, devaluing the person he or she is now. Families will often make explicit comments about how the patient has changed: “you did not use to … ” or “before your injury, you were so … ,” and so forth. But there also are more subtle forms of this phenomenon. For example, even the family's unspoken (and understandable) grief for “who the patient was” is often perceived and experienced by the patient as a devaluation of who he or she is now. As clinicians, we are much less likely to compare patients to their preinjury selves because we rarely have known them before their brain injury. However, clinicians may be prone (consciously or unconsciously) to identify with the family members' perspective, partly because so few of us have experienced brain injury ourselves. In retrospect, I now realize that I began my own career as a brain injury clinician by almost always identifying with and endorsing the family's perspective about the perceived changes in the patient's identity. Although this allowed me to understand the family's situation and to help the family through the process, I now wonder if it did not hinder my ability to accept and appreciate my patients as they are now (rather than seeing them as always different from, and less than, who they were before). Because the perspective of the person with a brain injury is often underemphasized by families, clinicians, bioethicists, and society at large, I now find myself “compensating” by making an effort to reemphasize the patient's perspective, even when counter to the view of the family. Ideally, as clinicians, we would like to meet both sets of needs: those of our patients' families as well as our patients. We need to learn ways of honoring family members' grief for the perceived loss of who the patient was while at the same time accepting and affirming who the patient is. After the onset of AD or any neurologically debilitating injury or illness, many friends and family members struggle with changes that affect personalities, identities, and relationships. It is not surprising that the caller to the Pat Robertson show remarked, “His wife as he knows her is gone.” But the claim that these changes cause the “person [to be] gone,” belies a fundamental aspect of living beings. Change is inherent in life. Aging is a manifestation of that change. Just as bodies change throughout life, so do brains. With maturation of the neural connections comes language and reasoning and, eventually, a set of memories that construct and scaffold our identities. Results of research in psychology indicate that identity is not a unitary phenomenon, nor does its development unfold in a linear manner [1]. With aging or other life events, it may come to pass that our cherished identities desert us. However, just as parents must accept that a cuddly baby may develop into a difficult teenager, we must also accept that aging may take from us some, if not all, of those characteristics that made us appealing at an earlier point in our lives. Those who interact with us may find us less lovable or satisfying to be with, but that frustration does not change our being as persons. Loved ones often feel a great sense of loss and long for the way things were before the onset of a neurologic disease such as dementia. Fluctuating memories or moments of lucidity interspersed with confusion or disengagement can be stressful for friends and family who are habituated to patterns of interacting or to a level of intimacy expressed by emotional and cognitive connections that have diminished. Boss [2] has theorized about the concept of “ambiguous loss.” In a chapter entitled, “Goodbye without leaving,” Boss states, “Psychological absence can be as devastating as physical absence” [2]. In her research with families and survivors of various kinds of losses (eg, parents of missing soldiers, families of persons with severe dementia), she explores the effects of uncertainty and the fluctuation between hope and hopelessness. In losses such as death, there are socially accepted forms of grieving and rituals, and of practices that can ease the pain. In ambiguous loss, it is often hard to find meaning or to know how to deal with the sadness and grief while the person is physically present. However, although it is important to consider the impact of dementia on the webs of lives affected by it and to acknowledge the intensity of the loss, this should not translate to devaluing the altered person. Although some types of dementia affect the personality, other types leave the personality largely intact, despite the loss of cognitive ability. In the context of neuropsychological assessment, in which we examine and document the cognitive abilities of individuals with dementia, we have observed, on many occasions, the power of deeply held perspectives and habits of the mind, despite the most extreme loss of memory and knowledge. To illustrate, one of us (W.H.) tested a former faculty member of a celebrated academic department who had AD. He tried to explain that he would like to write a book on the experience of memory loss. Although by the end of the sentence, he had forgotten the beginning of it, his lifetime dedication to communicating and sharing his knowledge with others continued to shape his relationship to the world. In addition, some aspects of memory may be more resilient to disruption than others. Many anecdotal reports by caregivers attest to the longing for human contact that is felt by individuals with AD. Moreover, it has been reported anecdotally that even those with severe memory loss may react differently to the touch of a loved one than to that of a nurse. Thus, even when the ability to remember any personal history is apparently gone, the tactile communication of caring and support may be a connection and a way of indexing the past. Even when a person has lost most of his or her cognitive functions, which typically happens as AD runs its course, the presence of a person has value. In our society, value is often equated with doing, not being. However, some social and cultural perspectives define productivity differently. Ancestors may be valued for their role in having gone before and are viewed as guardians of a culture. Those who sit and meditate may be seen as serving the universe with their prayers or peaceful intention. Even when an individual with memory loss is not able to contribute to society in the same way as someone who is cognitively intact, we may value the role that the individual plays in affording others the opportunity to serve or in stimulating research or generating medical knowledge that might help others. Via these avenues, such individuals promote the well-being of society. On an even broader scale, those individuals with altered cognitive ability may serve society by affording others the means to develop compassion. To the degree that compassion is evoked in people, there is benefit to the society. Some who have been affected by AD have contributed greatly to our knowledge of this disease by writing books that educate others, by developing programs that help individuals and families, by supporting new treatments financially, and by engaging in other socially valuable activities. In addition, although we may eventually find a cure for ADs, it is unlikely that in the near future the suffering of old age (or poverty, or hunger, or any number of social problems) will cease, and compassion for others will remain key to our progress as an enlightened society. Thus, apart from a personal identity, those with cognitive impairment have a social identity that entitles them to respect and dignity. Dementia presents a new and important challenge to those of us in the community of scholars and practitioners who believe that mindfulness, based on Buddhist philosophy, has important perspectives to provide on ethical as well as practical questions that arise from human experiences of impairment. It is incumbent upon us to take up these questions, because mindfulness has much to offer as we confront progressive neurologic decline and our beliefs and assumptions about it. Kabat-Zinn [3] defined mindfulness as “paying attention in a particular way: on purpose, in the present moment, and nonjudgmentally.” Mindfulness is the active observation of our mental and physical processes. It can foster understanding our reality more deeply, as we begin to free ourselves from the influence of prior conditioning, expectation, and opinion. Mindfulness helps those who practice it to disengage from the illusion that we have some immutable surface characteristic that makes us who we are. We discover that our minds are always coming up with stories, illusions, images, and ideas, most of which have limited basis in fact [4]. Contemporary psychology views normal memory not as a veridical representation of fact but as a construction of the mind. As Singer [4] writes, “All these thoughts intermix and actually influence your experience of the world around you… . Your consciousness is actually experiencing your mental model of reality, not reality itself.” Mindfulness helps us to understand that we are not defined by what we are thinking or the contents of our cognizing. It helps us to connect with something more fundamental, something deeper, something that does not change from babyhood to teen to elderly person with memory impairment. Again, to quote Singer [4], “There is nothing more important to true growth than realizing that you are not the voice of the mind, you are the one who hears it.” As we wait for medical and neuroscience research to discover a cure or a means to prevent AD, we hope that those who study mindfulness will also ponder the meaning of memory loss and give us tools of wisdom and comfort to deal with it. Perhaps, in the midst of our struggles to understand and accept the loss of a loved one as we knew them, mindfulness may reveal new ways to experience and to value the person and our changing relationship with him or her. In summary, dementia involves a wide range of cognitive impairments (of which memory loss is only one), and the abilities of the person may be vastly altered. An individual may seem like a different “person” to family and friends. However, the concept of “his wife as he knows her” is more about perception than personhood. Individuals may lose the ability to remain employed, to function as an equal partner in relationships, and to engage in life decisions. The person may be unable to communicate or participate in his or her own health care and may require surrogate decision makers to make substituted judgments. The person may be declared incompetent and have a need for a guardian. None of these changes, however, makes an individual less worthy of dignity, respect, or consideration as a person with a history, a life path, and a continuing role in society. What happens to one's personhood and identity in the face of AD and related cognitive impairment? Does it completely erode personhood over time as it progresses or does a capacity for and continuity of self remain? There is no doubt, AD is a condition that is much feared. One can still hear common metaphors of dementia, such as “losing one's mind,” “becoming an empty shell,” and “the loss of self” [1]. Other negative conceptions are “the eradication of the essence of a person,” [2] and “the loss of those qualities by which we have come to define our humanness” [3] . Robertson's remarks reflect these thoughts that dementia is devastating and dehumanizing, a “kind of death.” However, over the course of the past 15-20 years, there have been dissenting voices that endeavor to restore humanity for persons with dementia. Over many years of clinical work with persons with dementia and their families, I have had the opportunity to hear firsthand the subjective experience of many persons living with dementia from the perspective of both the diagnosed person and the family members. What they have revealed is a sense of self in spite of changing cognitive and functional abilities. It is not only anecdotal information; research results have found that selfhood remains in people with dementia, particularly if they are nurtured by personally and socially supportive relationships [4]. It was Kitwood [5], a geriatrician in the United Kingdom, who described the experience of living with dementia as the result of a “dialectical interplay” between neurologic impairment and psychosocial factors, such as health, individual psychology, and the environment. Hughes et al [6] called this “whole sight,” that people should be treated as “wholes,” with attention not only to their biology but also to their psychology, their social and ethical concerns, and the cultural and spiritual aspects of their lives and their relationships. Kitwood [5] developed a clinical model that describes how individuals contribute to the “social death” of the person with dementia. In other words, the loss of self in dementia arises not solely from the disease but also from the way other people react. He emphasized that the social context has as much effect on the brain as the brain has on the person's abilities. Thus, the most disabling effects of brain disease are to be found not in functional impairment but in threats to one's sense of self and one's personhood. This is similar to the African notion of ubuntu, which Nobel Peace Prize winner and Archbishop Emeritus of Cape Town, Desmond Tutu characterized as, “each individual's humanity is ideally expressed in relationship with others,” or more straightforwardly, “a person depends on other people to be a person” [6]. How challenging it is to focus on supporting personhood and continuity of self when the person with dementia is changing, sometimes quite dramatically. It may feel as though the person is gone, even though he or she is physically present. How does a spouse or partner live with the ambiguity of supporting the personhood of the individual while grieving the loss of a life-long partner? Although we can think theoretically that people with dementia are more than their illness, the person with dementia is living and being cared for in a context of a family whose relationships have a long and complex history. For more than 20 years, I have had the privilege of working with, listening to, and learning from many of these families. After hearing Robertson's remarks and advice to the man clearly struggling with how to redefine his relationship with his wife with AD and to cope with the emotional challenge of loss and accompanying grief, I thought of the countless individuals and families I have encountered who face these same questions and decisions about how to live their lives in the context of this new reality, who face the ambiguity of living with someone who is physically present but feeling emotionally and psychologically very absent, especially in the later stages. Many of these individuals feel that they have lost their family member entirely to this disease. I discussed Robertson's remarks with a monthly spouse and partner support group for caregivers of persons with dementia and posed Dr Kirschner's questions regarding personhood and identity. Most of the group members have been caring for their loved one for many years, many of whom are now in the moderate to later stages of the illness. Responding to these questions were 2 men who were caring for their wives and 8 women who were caring for their husbands. The group members varied in their response to Robertson's remarks. A few strongly disagreed with him, but the majority appeared to understand and acknowledge, that, “yes, there is a kind of death,” there is the loss of the person that he or she used to be and the relationship that they had together. Many expressed sadness, frustration, anger, and devastation. Of those who expressed those feelings, a few recognized the need and are attempting to move on with their life. One man acknowledged, “[while it is not an affair], I do have a companion to go to the theater and to dinner, the things I can no longer do with my wife,” but another female participant responded, “I cannot imagine starting another relationship, I do not have the energy,” while also acknowledging finding other ways of taking care of herself. Many felt that there “is still a person in there,” and, although dramatically changed, this is still the person that they love. They are grateful for glimpses from time to time of the person they used to know. One woman in the group, who, although she agreed with Robertson that dementia is “a kind of death,” disagreed that the dementia made her husband less of a person. “I disagree. It is like pretending he is not there. This is the person I married, the person who is the father of my children, and he is trapped inside; it is cruel, but I still find my husband in that body. When he smiles, that is an alive person… . There is life until there is death.” Others in the group discussed their feelings of grief for the person that they have lost, talking about the stages of grief that they have experienced and the helplessness in the face of it. One woman said, “it is like watching him in quicksand; there is nothing you can do.” One woman commented how saddened she was that her husband no longer recognizes her. She described how she was often criticized by friends and family for visiting her husband in the nursing home every day, because “he does not know you any more.” She responds to them, “but I know him.” Another woman described how important it is to her to “give back” to her husband for all of the years that he had given to her and their children. Another stated that “I miss that person … I lost my companion and our life together.” I also posed the issue to a 55-year-old husband whose wife was diagnosed with frontotemporal dementia at the age of 48 years and whom he has been caring for the past 6 years. His wife now requires assistance and care from others for most of her daily needs. She is no longer able to speak. He responded in an e-mail with these thoughts, “I do not believe the question of personhood is dependent on brain function. I was fortunate to have had this discussion with my wife on many occasions while she was still able to do so. I know for certain that she shared this view. However, [I think] our personal and social identities are much more closely linked. Through brain development and environmental input, those identities change over the course of our lives.” He reflected, “it is easy for some people to quickly resign themselves to the inevitable, that the identity of the person they once knew is never coming back. While that is almost always the case, the result is that they tend to stop looking for the traits that are still there.” He emphasized the importance of “search[ing] for and savor[ing] what remains … the core of identity and being is the last to fade.” The individuals to whom he was referring are their young adult children who are experiencing their mother's illness very differently than he is, and, in a way, that is very difficult for him as her spouse and partner of many years to understand and accept. As I listen to these reflections of caring for someone with dementia, I am reminded again of how much of our identity and personhood is inseparable from our relationships and the context in which we are living. Again, who we are depends on others. May we all be in relationships in which our personhood, our sense of self, and our identity are recognized, supported, and affirmed. My thanks to the Northwestern caregiver support group members for their valuable contributions to this commentary and social work interns Stefanie Bonnell and Mary Popelar for taking careful notes during the group discussion.

Kothari S, Flanagan SR, Kwasnica C, Brown AW, Elovic EP. Congenital and acquired brain injury. 5. Emerging concepts in prognostication, evaluation, and treatment.