DEMENTIA SURVIVAL -- A NEW VISION 1
March, 2001 (rev. Dec., 2003)
This paper presents a radical vision of recovery of autonomy, competence and quality of life after diagnosis with dementing disease. These interventions would not be radical if applied to a child who was victimized by the analogous trauma of an automobile accident in which he lost a parent and survived with head-injury and learning disabilities.2 Unless the damage was extreme, he could and should be taught that a life with loss and disability can nevertheless be rich, full, and meaningful, and then be empowered to get his life back. But if the diagnosis is dementing disease we all tend to throw up our hands, as if biology were destiny. The truth is that brain pathology, unless extreme, is only one factor in brain function. Plaques and tangles can destroy synapses, but the courage to learn can create new ones. To paraphrase a slogan from the sixties: “If it’s worth doing, it’s worth doing slowly.” Studies show that there are only moderate correlations between extent of Alzheimer disease (AD) pathology at autopsy and severity of clinical dementia (Cheston and Bender, 1999; Snowden, 2001). And a study of vocational success after traumatic brain injury found that duration of coma (an indication of severity) accounted for only 8% of the variance (Ezrachi et al., 1991). Also suggestive of the untapped potential of neuropsychological rehabilitation is a fascinating case-study entitled Half a Brain is Enough (Battro, 2000).
The theoretical basis of the present program is an integration of holistic neuropsychotherapy (Ben-Yishay, 2000; Judd, 1999; Prigatano, 1999) and post traumatic stress disorder therapy (Herman, 1997; James, 1989). Insights from therapy for substance abuse are also pertinent (e.g., Daley, 1991; Evans and Sullivan, 1995). A specific issue in the case of Alzheimer's disease (AD) rehabilitation is impairment of problem-solving due to parietal-lobe dysfunction. Here the rehabilitation literature is thin--its concern is primarily with frontal-lobe issues. The 10-step rehabilitation program for problem-solving presented here is particularly cognizant of parietal deficits3, while assuming a modicum of capacity for sustained attention (frontal-lobe function). This capacity is usually retained in mild to moderate AD--if not, it could be a prior rehabilitation issue.
The first step in recovery of quality of life is emotional safety. This is well recognized in the literature on Alzheimer’s caregiving. The goal is to recover from anxiety or depression and be strengthened in warding them off, to learn basic coping skills, to do basic advance planning, and to find some enjoyment in a simpler and more present-oriented lifestyle. Robyn Yale (1995) recounts a dialog in a successful safety-oriented support group:
Mr. J: I’ve been thinking about how things might go for me. Do any of you ever worry about what will happen if you get worse?
Mr. R: I sometimes wonder what it would be like if I become unable to speak.
Mr. H: Well I’m concerned about those things, but I try not to dwell on them…. I feel good now, and I take each day as it comes.
Mrs. T: That’s a smart way to look at it. After all, we have to go on living.
Here painful fears are uncovered, are validated, and then are put away. By contrast, Tom DeBaggio in his book Losing My Mind (2002) wrote that the one thing he could never forget was that he had Alzheimer's. He could perhaps have benefited from a safety group--because one goal of a "safety" group is to empower a person to forget at times, and thus be able, as Mrs. T said, "to go on living."
I will proceed with the program I wrote for myself (I was diagnosed with AD in 1998) to help me move beyond the safety stage.
II. TEN STEPS FOR RECOVERY OF SCHOOL-AGE COMPETENCES (INSTRUMENTAL ACTIVITIES OF DAILY LIVING)
The principal symptom of mild-to-moderate AD which interferes with activities of daily living is "conative loss," the inability to set goals and mindfully go through the steps to achieve them, i.e., to problem-solve. (If it weren't for conative loss, impairment of short-term memory could be well compensated for by a reminder system.) The explanation for conative loss seems to be impaired processing-capacity in the parietal lobes, making persons with AD incapable of "laying out" a problem in symbolic space in the ways previously learned. But the former ways were learned because they were available, not because they were absolutely necessary. Hence, there is great potential for relearning problem-solving using new procedures involving a greater number of simpler steps. (Procedural learning such as learning motor skills is relatively unimpaired in AD.) An analogy is to the challenge faced by the stroke patient one of whose hands has become disabled. With effort and ingenuity he or she can regain a high degree of proficiency in tasks such as dressing (cf. Mayer, 1996). The success of Montessori methods in work with advanced Alzheimer patients is supportive of my general approach.
If rehabilitation is such a viable option, why doesn't more of it happen spontaneously? We must ponder this question to understand what difficulties we face. The losses entailed by AD are complex, multiple and overwhelming. Further, due to lowered stress-tolerance (a principal symptom of AD), trying (conation) tends to make performance worse. This generates "learned helplessness," whereby trying itself becomes painful or impossible. However, a certain degree of willpower is required for optimal relearning, just as it is required for neurologically normal people to learn via confronting reality. All this implies that designing optimal interventions requires the sophistication employed in other areas of great human difficulty.
There are also psychosocial factors opposing AD rehabilitation. Ours is a culture into fixing things, not into improving the quality of limited lives. In the context of our poor performance in the areas of pain management, of traumatic brain injury rehabilitation, of health care for the poor, disinterest in AD rehab is not surprising. If professionals have nothing to offer, it is easy for a layperson to think that any efforts will be futile. When I was diagnosed with AD I retained in my memory knowledge about why the railway lines to Auschwitz weren't bombed. The professional military mindset was to win the war rather than consider "details." The American Jewish mindset was to trust the professionals. Never again! In this spirit I researched the potential for rehabilitation and struggled to recover my problem-solving capability. My 20-point increase in IQ from 1999 to 2000,despite MRI evidence of progression, is evidence of success. For further background, see my Potential for Rehabilitation in Alzheimer's Disease.
I will proceed to present a program for recovery of activities of daily living at the level of, say, the 11-year-old. This should provide a foundation for relearning higher level problem-solving, e.g., life-review and integration, with recovery of quality of emotional life.
I'll use the format of addressing an individual, but a caring and knowledgeable support network is a big plus.
The first and perhaps most difficult step in getting a big chunk of it back is HOPE: daring to believe it might be possible. Developing Alzheimer disease, and then being diagnosed with it, is an overwhelming trauma. There is fear, anger, grief and depression to go through, maybe giving up work, maybe giving up driving, giving up hopes for an active retirement, sorrow about being a burden on others, about not being able to see (or recognize) your grandchildren graduate from college. Working through to a state of acceptance is difficult enough. Why reopen old wounds for the sake of questionable hopes? T.S. Eliot famously wrote: “April is the cruelest month.“ It's not surprising that when I talk with other patients about recovering the ability to tie their shoes I get jokes about velcro.
And to be open to rehabilitation can throw your shaken and shaky identity as an AD patient into further turmoil. If nothing else, we are helpless innocent victims of a catastrophic illness, deserving of caregiving. But if we can recover much of our functioning for years, who are we then? We probably won't be able to work at anything like our old jobs, we cannot expect to regain or long retain the ability to drive (safety issues make this a special case), our emotions do not return to “normal,“ yet we are no longer "victims." We are in limbo.
So, the next step is asking and answering WHY--we confront motivational obstacles. Why care, why try? Search for an answer in your deepest beliefs and memories. Personally, I want to leave a legacy for my children and grandchildren that I was not one who, as many of my kinsmen did, "went like sheep to the slaughter."
The third step is ASSESSMENT. For this, you must first examine your life: what is your actual level of ability and disability? This is difficult because our losses don't come upon us in neat packages. Instead, we're beaten down by a hailstorm of errors and oppressed by fatigue. So we may not know whether we can actually no longer do something, or whether it has become much more difficult, or whether it feels impossible. However, at this stage there is no need for much precision. A good way to organize your "inventory" of abilities is go up through the years of childhood. A few examples: Can you still tie your shoes? Can you make a sandwich? Can you add two-digit numbers? Can you do the laundry? Can you read a novel? Can you balance your checkbook? Can you do household repairs? Where do you start having trouble?
Whatever you find in your inventory, it's important to work toward an attitude of unconditional ACCEPTANCE. "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." For recovery, the best attitude is the same as that for sports, that winning is important but not what's ultimately important.
The next step is REMEMBRANCE. Remember what it was like to be a young child learning through play. Regain an attitude of wonder, exploration and engrossment. "How high can I pile these blocks?" It is fun to find out. It is fun to see them tumble down, too. And in such play the child is learning about self and world--verbal explanations are unnecessary. Get Montessori-Based Activities for Persons with Dementia (Camp, 1999). It shows how the impaired elderly person can learn by progressing through sequences of interesting activities just as the child does. Finding good sequences requires a creative approach, and the book is helpfully suggestive. Its material is too elementary to be directly applicable to early Alzheimer's, but the principles are universal.
The challenge in rehabilitation is relearning all the variegated activities of daily life using easier steps. It's quite analogous to the challenge of Tommye Mayer, the stroke patient who wrote One-Handed in a Two-Handed World. (1996). How do we manage if we can only think one thought at a time? It's hard to say explicitly--like the child, we learn through doing, not from blueprints. We learn through exploration and absorption. Perhaps after we relearn something we can explain how we did it. How could I compare sharper and blurrier at the eye-doctor's despite my parietal dysfunction that makes me unable to visualize two things at the same time? I think it's analogous to Mayer one-handedly opening a jar by holding it with her thighs. I sense I attend intently to the first lens but only enough to the second to make the comparison.
"A journey of a thousand miles begins with a single step." A sequence of "baby-steps" can lead one to amazing places. Persons with amnesia far worse than ours have been able to learn step-by-step to solve complex puzzles like the Tower of Hanoi (Hilts, 1995), despite being unable to remember that they have ever seen it before. Like the child, we can repeat a simple activity until we feel assured we are at home with it. Then we can look for something more difficult to do, which stretches us but does not overwhelm us. And if a challenge seems overwhelming, we can retreat to something simpler.
Then comes ENGAGEMENT--selecting a concrete problem and confronting it. A year ago, February, I decided to see if I could put snow chains on my tires, just in case. Basically the chains were a new challenge, since I had just moved to Montana from living thirty years in southern California. (Sometimes it is easier to learn something new than rehabilitate a former activity, for the old, now dysfunctional, habits may interfere with establishing new pathways.)
In line with my baby-steps approach, I thought I'd begin with the easy goal of taking the chains out of the box and laying them on the floor. But even this felt overwhelming, like uncoiling a plate of spaghetti with blurred vision and shaky hands. Then I retreated to trying to find one end of one chain and clearing it a little from the tangle. That was better, but nevertheless it felt exhausting and somehow distressing, as if my "mind's hand" was not only feeble but painfully arthritic.
That experience indicates why the next step is PERSEVERANCE. It's normal to feel emotional pain in nakedly confronting one's deficits, thus a requirement for recovery is the willingness to walk through some moderate pain Unfortunately, there is a common assumption in Alzheimer care that distress must imply that something is being done wrong--perhaps the task is too difficult or psychosocial support is lacking. Of course, this may well be the case, but not necessarily so. The requirement for perseverance seems inconsistent with the "play" attitude proposed earlier, but actually is complementary to it. There has been a great deal of research on children, both regarding normal learning tasks and recovery from trauma, which supports this complementarity. It seems to be a law of human nature that change is sometimes difficult. So the need for willpower cannot be discarded in contexts where there is learned helplessness, but must be treated with great sensitivity to the immediate challenge of the task and the need for support. And distress needn't be severe or prolonged. Respite, support, and positive self-talk are invaluable.
After Perseverance comes VALIDATION. Whatever the outcome of the project, you should take the time to reward and affirm yourself. One would think that this step would be so pleasant as to be able to be taken for granted. But validation is unfortunately omitted in a variety of educational situations, both when there is failure and when there is disquieting success. Again, change can be painful and the path of least resistance can be to move on immediately after completing an attempt, rather than confront the implications of failure or success for the self-concept.
Then CONSOLIDATION is required. Sufficient repetition is needed so that procedures can be well-habituated (thus executable with minimal stress) in order that they may be assembled into complex abilities. The use of repetition in Montessori education and in developing sport proficiency is relevant.
Finally RESPITE deserves note as a separate step, because fatigue is omnipresent in AD. Like Validation, it cannot be taken for granted. For example, some patients keep excessively busy as a way of avoiding depression--alternative methods of coping with depression improve opportunities for rehabilitation.
So--the ten steps are HOPE, WHY, ASSESSMENT, ACCEPTANCE, REMEMBRANCE, ENGAGEMENT, PERSEVERANCE, VALIDATION, CONSOLIDATION, and RESPITE. The steps must be gone through many times, considering the many activities comprising life, and they must be repeated when the disease progresses. Yet each step builds self-esteem.
I've been helped by 12step programs, and many of their concepts and slogans are applicable: "Easy does it," "keep it simple," "one day at a time." (See my proposed 12 steps for an "Alzheimer's Anonymous" at http://members.aol.com/MorrisFF/AlzAnon.html) As with the Anonymous programs, thoroughness in working a step is not required before moving on, and one can freely go back to an earlier step and start moving forward again from there.
III. MY PERSONAL EXPERIENCE WITH THE TEN-STEP PROGRAM
It did not require a painstaking personal inventory to see that my weakest area, in terms of the normal developmental sequences of competences, was visuospatial learning and apraxia. I identified with brain-dysfunctional patients whose verbal skills were relatively preserved but were overwhelmed by practical tasks that a 10 year old could easily master, such as assembling a vacuum cleaner or opening a can of dog food (Skloot, 2000; Henderson, 1998). My experience with the tire chains was not highly reassuring: while I did complete the task, the memory of how difficult and distressing it was tended to outweigh the intellectual awareness that I had succeeded.
In order to further study and develop my program I chose to try to learn basic knitting from diagrams With patience, I was not only able to succeed (though it took much longer than it would have pre-dementia) but find that my learning had transferred to analogous tasks, and indeed I sensed recovery in my “3-dimensionality” as a person. This is consistent with Oliver Sacks’ (1984) report of experiencing a loss of visual depth-perception as correlated with a diminished, institutionalized self.
The most interesting and important part of my learning experience was the distress--reminiscent of my struggle with the tire-chains, but more intense. I do not believe the increase in distress was due to greater neurological impairment, since despite the presumed progression of the disease I could tell I had profited from the experience with the tire-chains and other such activities, and was starting at a somewhat higher level. I think it was due to my goal of deeply exploring the learning experience--I could not, as earlier, just grit my teeth and somehow get the job done. The distress, though lasting only hours altogether at an intense level, and capable of relief through distraction, was sufficiently pervasive and aversive that I would never have persevered unless I had been intensely motivated and committed. The most similar experience in my earlier life had been quitting smoking--the distress involved in recovery from substance abuse seems highly pertinent. This is not the distress of, say, flu-like physical symptoms, but the more subtle yet devastating pain that may lead a person to return to addictive substances months after the period of detoxification. There is a significant parallel to the well-known catastrophic reactions to which brain-dysfunctional persons are vulnerable.
Abstinence from an addictive substance or naked confrontation with neurological deficit challenges primitive psychological defenses. The thought that for profound and instantaneous relief all one has to do is take a drag on a cigarette or quit the task and regain a sense of being able to handle life increases the pain to the level of an agonized craving.
Sacks’ experience of staring into the abyss (1984) is pertinent--and he was just dealing with non-progressive peripheral nerve injury. Nevertheless he had a chilling experience of the horror of Nothingness (and wrote masterfully about it). With a progressive dementing disease the Nothingness is more intimate and more actively engulfing.
As Sacks testified, and as survivors from prolonged and severe addiction have testified, in such a situation spiritual resources are invaluable: “Yea, though I walk through the valley of the shadow of death, I will fear no evil, for Thou art with me.”
IV. OVERCOMING TOXIC SHAME
The practical competencies developed by the school-age child represent a foundation for dealing with the identity issues encountered by the adolescent. The person with a progressive dementing disease faces the challenge of a tarnished and diminished self, a “spoiled identity” (Goffman, 1963). He is faced with a challenge analogous to the adolescent’s, of creating his own self rather than being a result of his heredity and environment . He hopefully believes that the essence of selfhood has not been truly diminished by the deficits and losses. He hopefully believes in some equivalent of the myth that he has been created in the image of God with a gift to give and a song to sing. Though now he can think but one thought at a time, it can still be a loving thought, and that’s what’s important.
The challenge is how to feel things like this, rather than just believe it would be good to feel them. We can learn from the successes of other stigmatized individuals such as incest victims or persons with physical deformities or disabilities.
A theoretical perspective is important: Why, in general, are persons so likely to experience a spoiled identity when maltreated? For me the most plausible theory is that “normalizing” such a situation is an evolutionary survival mechanism. The extreme is the Stockholm syndrome, where hostages bond with their captors. One sees abused children clinging to their abusers. An alternative is given by the slogan, “Better die on your feet than live on your knees.” But those who die on their feet when young will not pass on their DNA. Thus our vulnerability to toxic shame, and to normalizing situations which should be outrageous, is a survival mechanism like the fear of heights and the innate aggressive response. These are also survival mechanisms, but the mature human being can, through self-reflection and effort, choose not to be enslaved by them. He can modify his feelings and behaviors, and transcend these survival mechanisms. He can transcend toxic shame as well.
Robert Murphy, an anthropology professor, had a spinal tumor which slowly and ineluctibly reduced him to quadriplegia. Like me, he saw his condition as a rare opportunity for insight into society and the human condition. “An incident during our research on the disabled posed several basic questions bearing on life and death. While my wife, Yolanda, and I were visiting a government office, a young employee who had moderate cerebral palsy wheeled in with tears streaking his face. After he calmed down, he told us that a man from another department down the hall said of him to a companion, ‘I’d rather be dead.’ This set in motion a number of queries in my mind: Why did the man say this loudly enough to be overheard? Why was my young acquaintance so stricken by the remark? Why did it upset me so? …”(1990)
I agree with Murphy on the central anthropological significance of incidents such as this. One might call it a “primal scene” of toxic shame. Denied fear of shame causes the abusive outbreak. And both disabled persons are shaken despite themselves, witness to the pervasive tendency to internalize. Publicly recounting the story, as Murphy does, and declaring it important, is a step on the path to liberation.
A powerful way to free oneself from toxic shame is to act in such a way as to dramatically contradict the lie which is at the core of the diminished self. Moses started his career by killing an Egyptian who was beating a Hebrew slave, thus stating emphatically that such abuse and exploitation was no longer normal but was absolutely intolerable. Jesus submitted to death on an instrument of degradation in a way that demonstrated that love casts out fear. These and other heroes are models for the praxis of a liberation theology which holds the darkness of shame up to a transcendent Light.
We brain-dysfunctional persons can learn from peasant leaders. They too have limited cognitive resources--in their case due to lack of education and poverty which leaves them little time and energy for independent and creative thought. They too have to struggle with the toxic lie that their situation is hopeless or even divinely ordained. They too are sustained by a faith in something beyond themselves. One writes: “I’m ready for anything, and I’m not afraid to die. Because I know the campesinos will continue the struggle, and that my death will be part of that struggle. The only way they can stop me from what I’m doing is by killing me. But that won’t stop the others from following my path. In that sense, I’m stronger than they are” (Benjamin, 1987).
In 2001 Christine Bryden, diagnosed with frontotemporal dementia, and I applied this theology of liberation from toxic shame by presenting at a plenary session of the Australian National Alzheimer's Conference. We went public with our abnormal PET scans and proceeded to declare: "Amnesty International ... has a beautiful message from survivors of imprisonment and torture: 'Let no one tell you your hands are bound!' Let no one tell you that because your frontal lobes are damaged and you have tendencies to be childish or apathetic you must be enslaved by these tendencies. In religious terms we could say God created us to love and serve him, not to be emotionally or statistically normal."
V. FURTHER POSSIBILITIES FOR PERSONS WITH DEMENTIA
Oliver Sacks (1998) suggests that musical intelligence may not only be preserved in dementia but even heightened. He thinks of an aphorism of the German poet Novalis: “Every disease is a musical problem, every cure is a musical solution.” And he rhapsodizes: In dementias, one may find all sorts of specific losses … and, as the disease worsens, a reduction of personal identity. And yet this reduction is virtually never complete; it is as if identity has such a robust, widespread neural basis; as if personal style is so deeply ingrained in the nervous system that it is never wholly lost, at least while there is still any mental life present at all. (This, indeed, is what one might expect if the personal quality of experience and feeling and thought has molded the structure of the brain from the start.) And it is this that makes a continuing possibility of being affected by music, even in the most deeply damaged patients, long inaccessible to language and most other modes of communication. For it is the inner life of music that can still make contact with their inner lives, with them; that can awaken the hidden, seemingly extinguished soul; and evoke a wholly personal response of memory, associations, feelings, images, a return of thought and sensibility, an answering identity.
The problem with music therapy has been the temporariness of its effect. In "Holistic Interventions for Personality-Rehabilitation" I have proposed a novel integration of meditation and music that might overcome this limitation. It seems to work for me.
Bruce Miller (1998) has studied the flowering of visual creativity in persons with dementia--he attributes it to disinhibition. This is consistent with the research reviewed by Guy Claxton (1997), suggesting that concentrated, focused, analytic and solution-oriented thought may inhibit diffuse, intuitive and creative cognitive modalities. His book is subtitled “How Intelligence Increases When You Think Less.”
The most exciting possibility is that a person challenged by dementing disease might actually, for a period of years, become more intelligent in verbal and nonverbal problem-solving, since these procedures are normally quite inefficient. Just as a castaway in a harsh environment may develop a resourcefulness that he never knew he had, it is possible that a person who is forced to slow down and simplify may develop new creative and intuitive strengths, which are not only valuable in themselves but can be adapted for problem-solving.
Society educates us to think in Roman numerals, as it were, for the sake of social order and status, rather than the more efficient Arabic numerals. We often write MDCCLXXVI on a public monument rather than 1776. When neurological disease impairs our processing-capacity and jolts us out of our previous ornate and prestigious ways of cognitive functioning, we might, through necessity, discover simplified ways of thought, that, paradoxically, are more efficient and effective than those for which we were rewarded in school.
As far as I know, my speculation that a person with dementing disease can actually grow in problem-solving intelligence is original, and it may be that the apparent ridiculousness of such a project has acted as a self-fulfilling prophecy.
VI. THE DEMENTIA ADVOCACY AND SUPPORT NETWORK
Gandhi wrote: I do not want to be reborn. But if I have to be reborn, I should be born an untouchable, so that I may share their sorrows, sufferings, and affronts leveled at them, in order that I may endeavor to free myself and them from that miserable condition.
In our contemporary “hypercognitive” society, to be afflicted with a dementing disease is to be reborn as an “untouchable” member of an inferior caste. Some of us are proud to have organized the Dementia Advocacy and Support Network, where we share our sorrows (and joys) and work to claim our rights. We are “a voice and a helping hand.” Information may be found on our website: http://www.dasninternational.org/
VII. FAMILY HEALING
Christine Bryden and I submitted the following abstract to the Alzheimer’s Disease International Conference in New Zealand in October, 2001. It indicates a direction for our future work:
Co-dependency between persons with dementia and their families
Brain damage, particularly if it is diffuse or involves the frontal lobes, may impair our judgment so we fail to process the challenge of our diagnosis with dementia. Our defence is to pretend at normalcy or withdraw into learned helplessness. But our family's response - of becoming 'denier' or 'carer' - may also demonstrate a corresponding lack of judgment.
This pathological co-dependency may be a sign of unresolved or 'frozen' grief: the person diagnosed grieving for a 'degenerating sense of nobodiness', and the family grieving for a loved one being lost incrementally. Alternatively it may indicate a complicated grief reaction due to a dysfunctional family system being under extreme stress.
We survivors of the extreme trauma of dementia and its diagnosis have once been in the world of normalcy - we know both worlds intimately - so are in a unique place to build bridges. We propose innovative interventions to break this co-dependency, looking to rehabilitation based on changing the psychosocial milieu.
We need to be able to process the challenges that face us, and move from victim to survivor. Our cognition is failing, but our emotional sensitivity remains and can be harnessed for bringing healing to ourselves and our family.
1. I wish to thank Carolyn Baum, Geri Hall and Carol Bowlby Sifton for helpful comments. An earlier version of this article was a poster presentation at the Australian Alzheimer Conference in 2001. A somewhat condensed version was published in Alzheimer's Care Quarterly, 4, April/June 2003, pp. 79-84.
2. If I were a woman, I'd use the generic feminine rather than the generic masculine.
3. For understanding of the particular issues posed by parietal dysfunction see Luria's, The Working Brain (1973), and his inspiring The Man with a Shattered World (1987).
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