Dementia is usually assumed by the therapist to be an irreversible organic brain syndrome (OBS). This assumption typifies the premature closure that is prevalent in the treatment of OBS patients. Often the brain dysfunction is compounded by old age, somatic problems, a family situation in which the patient is helpless and anxious; and depression from many sources including awareness of self as lacking in cognitive faculties. Such a predicament often seems to the therapist something that can be responded to with support only, rather than definitive psychotherapy. It seems psychostatic rather than psychodynamic. The pathology is irreversible. A deficit due to brain disease may not reverse or improve and may seem to have no relationship to interpersonal activities. By and large such patients are uninteresting to therapists because their future possibilities seem so small. The fact that the deficit is the mind itself makes both therapist's and patient's responses different from those elicited by other chronic illnesses. The patient's mental capacity, the very target of interpretive work and understanding, is itself permanently damaged.
However, behind these issues suggestive of a static situation often lurk more deeply seated ones that impede seeing interventions as helpful to the overall picture.1 The therapist, for one reason or another, may confuse the difficulties facing the patient or the family with the actual cerebral pathology, and overlook or withdraw from interventions that decisively change the overall morbidity caused by the disorder. This avoidance on the therapist's part may be due to a simple inability to assess the situation from the point of view of the family, or from basic discomfort in working with families or other systems. Discomfort with family systems may accompany similar difficulties with other systems important in the patienVs life such as hospitals, other institutions, extended family and other helping persons that may be understood widtin a system's framework.
Any lack of skill as a disciplined psychotherapist, especially in tolerating and working with severe countertransference reactions, may further impede the therapist's ability to view the therapeutic work as productive or even decisive. The therapist may be overwhelmed, feel futile, and withdraw too soon. Countertransference factors include the therapist's guilt at having an intact mental apparatus when he or she is face to face with a patient who is deteriorating. It may be difficult to get close to a patient whose progress is not gratifying and who may be depressed or unable to converse well . He or she may be swept up in feelings of helplessness or in the panic generated by the family of the patient with organic brain disease, because they feel too many demands, or too much guilt about caring for such a patient. The therapist should be able to identify and modify fantasies about what is involved in the care of such a person; frequently the patient's needs are felt in fantasy to be inexhaustible, and the patient seen as someone requiring endless care, never improving, using up resources, limiting other people's possibilities, and enduring for many years as a constant drain. In the face of all of these, the therapist may overreact to feelings of futility, resentment, panic, and a misguided notion of what is required in the care of such patients.* By being overreactive to the situation, the therapist runs the risk of becoming overwhelmed, feeling repulsed and futile, and abandoning the therapeutic scene too soon, and with an incomplete view of things. The danger is particularly great because overreaction in those cases usually consists of giving up, and the therapist can rationalize this futility as appropriate to the cerebral pathology itself, and does not see himself or herself as being reactive.
The situation is, of course, much more complex if the therapist is wrestling with unresolved issues, often with his or her own parents; their decline, their demands, the feelings of guilt about superceding parents, about not doing enough for them. These lead to misestimates of what is actually required and pessimism about any amelioration at all. The therapist, with these issues unresolved in his/her own life, is often unable to help the family lacking in the ability to model and vocalize what the family cannot say, and unable to face fantasies about the greediness of heirs, the wish for death of the patient, guilt about this, wish and fantasies about caretaking, to name but a few of the fantasies that commonly arise in the family.
The treatment of the patient with dementia is almost never the province of a psychotherapist alone. There are usually medical illnesses to be contended with. There are institutions and social systems including agencies, hospitals, lawyers, extended family members, nursing homes, all of which may exert pressure on the family system, and in turn on the patient. Both family members and institutions fear being blamed, fear having demands made on them, and vie for a favorable position in terms of their own family or institutional system. Entire systems or networks of systems have to be considered with the patient part of larger groups. Not only must individual and family therapy be considered but also interventions requiring comprehension of the entire network of systems of which the patient is part. In this network the psychotherapist may be felt to be of low rank, either a non-medical person, or a medical person assumed to be auxiliary in the bigger picture. Extraordinary pressure may be placed on the therapist to deal with larger systems in which he or she is not in control.
The field of dyadic individual psychotherapy may be too limited to be effective. The pathology itself brings forth defenses such as denial and confabulation that protect against catastrophic reactions,3 and shame.4 These, coupled with the cognitive deficits themselves, may disorganize efforts at individual therapy. The therapist treating such a patient in isolation is likely to feel demands of the situation heavily, and to either overregulate the patient or become exhausted and withdraw from the treatment or confine it to simply reassuring endeavors. The project of freeing the patient up from repetitive and unproductive parts of interpersonal processes becomes a very murky concept unless it is seen from the perspective of die entire family system.
For these reasons family-focused treatment must be considered the treatment of choice for the patient with dementia. The family provides the best setting to see what containment functions have to be exercised by the family when the patient's usual personality functions or cognitive functions have declined. By examining what the family does, feels it has to do, and realistically has to do, the therapist is in a better position to see the impact of family process on the patient, and the impact of the patient on family process. These are often offhandedly assumed to be irrelevant in the treatment of the patient with organic brain disease, but close examination will reveal that they are important in the vast majority of families of OBS patients. Irrational responses or responses simply not dictated by die cerebral pathology alone abound. The therapist can reduce the overall morbidity to the patient as well as to those around him by helping to clarify some of these issues. Often the patient's condition can be made worse by things mat me family does, and it is no rarity to have family behave in such a way as to agitate a patient whom they can no longer tolerate into actually requiring some custodial situation even tíiough the actual cerebral patitology itself does not really strictly necessitate such care. If the therapist is swept up in the escalation of symptomatology and accepts an explanation that the panic and helplessness are due to cerebral disorder alone, he or she is likely to overlook the interpersonal processes and succumb to irrationaJ action rather than a realistic estimate of what is required and by whom.
The family also provides a basis for comparison with other systems that support the patient and the therapist can get an advantageous view of other emotional fields by inquiring what family members think is required of them as caretakers. This may be compared with other caretaking systems, eg, hospitals and nursing homes. Both similarities and differences are noteworthy. A similar response by several different systems points to the patient's role in the difficulties. A different response, eg, if the patient is cooperative on a hospital ward, but agitated at home, invites investigation of what in the family system accounts for the difference (Case C).
The therapist of the OBS patient has to face many issues within the family that may be adderssed psychotherapeutically and definitively worked through. The following is a partial list:
1. Ignorance about the illness; whether it is progressive, whether the patient will require extended care, etc. (ie, to the nature and course, and even genetics, of the illness). The family of an OBS patient is frequently not informed about diagnoses and prognoses, often because such patients get insufficient work-up to distinguish cortical from subcortical disease processes. In the absence of a complete work-up, deterioration may be referred to as "aging" or "senility" and not a specific diagnosis which carries with it prognosis and treatment response. There may also be ignorance about responsibility; what the patient can do, and for what he can be held responsible. Frequently fantasies abound within the family that the patient can be responsible for absolutely nothing, and should be cared for totally when indeed the patient is capable of many responsibilities that have not been explicit or agreed upon. An educational component with patients with dementia, whether or not the etiology is known, should be vigorously pursued with the family early in the treatment. They may anticipate memory loss, incontinence, suspiciousness and even hitting, and must be told that in severely impaired patients simple activities of cooking, smoking, and driving may now be dangerous.5
2. Denial. Often the patient's deeply rooted defense mechanisms against awareness of organic brain deficit are buttressed by the family's reluctance to discuss the deficits in a tactful way that does not unnecessarily humiliate the patient. The family may be needed to minimize the effects of the patient's denial. They should be consulted about whether the patient can go shopping, find his way home, balance a checkbook, be left alone, care for himself, remain continent, etc. Often the patient's catastrophic reactions, rage and confabulations are not addressed by the family. Such difficulty may be compounded by any difficulties in communication that existed before the cerebral pathology.
3. Irrational role assignments. Often, a family homeostasis involves rigid role assignments that become debilitating when a significant member of the family has an organic brain disease that interferes with enacting such a role.
A retired colonel was admitted for work-up that led to a diagnosis of Alzheimer's disease. He had been successful in the military, forceful and decisive in financial matters, and both leader and tyrant at home. His wife was an exceedingly attractive woman two decades his junior, who was used to serving as hostess at many social functions, but taking no responsibility for the family's financial affairs, and making no decisions. Both rather enjoyed the role assignments, and the marriage was satisfactory to both. However, the decline of the husband's cognitive capacities left his wife overwhelmed. She could not function, refused to have him discharged from the hospital, attacked the staff, got unnecessary consultations, and bombarded the hospital administrators witfi complaints. After many family sessions, and finally individual psychotherapy sessions, she could face the shame and depression stemming from her own sense of inadequacy, and traceable to her family of origin. This had never been a problem in her marriage before the husband's illness. She enjoyed a dominant and overfunctioning man, and had to slowly learn to develop herself in areas that had never before been her responsibility.
It is common for daughters of women with OBS to find difficulty reversing lifelong roles and having to mother their moubers.
4. Failure of integration in the family, and failure of a sense of justice. Once the central cohesion provided by a senior family member with organic brain disease is gone, fantasies run rife in the family. Children often worry that others will either get more of the money or property, or leave them with caretaking. Even in cohesive families with much good will, such fantasies are rampant. So are feelings of guilt about fantasied triumph over aged parents, fears that insatiable demands will be made, that people will criticize, that certain family members will be left to care for the patient, and many others. Reactions to aggressive fantasies include gui Jt, depression, withdrawal when overwhelmed, and inability to talk straightforwardly about what is required of various members in the family.
5. Retardation of maturation. Often, organic brain disease in one family member blocks efforts on the part of one or more other family members to separate. Their centrifugal force is inhibited because of what the patient requires, or the patient himself may be unable to separate because of die illness.
A 37-year-oid divorced man had a respiratory arrest with enough cerebral anoxia to cause moderate brain damage. His cardiovascular situation improved, but he had a lasting cerebral deficit. Since his wife and children were no longer in the picture, he was thrown back into a dependent relationship on his parents. The parental marriage was extraordinarily pathological. Although the parents had been divorced for many years, they still lived near each other. The father, a pathologically paranoid man, spent most of his time with the patient's mother, a woman who suffered from a chronic debilitating illness. Father rationalized his difficulty separating by saying that she needed caretaking and noting his guilt about having left her when she was 1 1 . The patient, one of the two children of the marriage, had been the one most drawn in by the marital difficulties. He was left with a good deal of pathological dependency resulting from his involvement in the marriage. After great difficulty, he had separated from his parents in his 20s and married. His own marriage was not successful, and tfie subsequent cerebral difficulty threw him back into the original family situation , again dependent on his parents. The cerebral deficit was compounded by a serious depression (or pseudodementia),6 which responded very well to antidepressant medication until his mother took him off the medication and had him admitted to another hospital where he was placed on a different kind of medication.
The patient himself, a spouse, children, or even parents may be unable to leave or to find gratification away from the family, especially if the family is narcissistically vulnerable or overly enmeshed prior to the illness. In such cases, family members find it hard to extricate themselves from the doings of other people and to have areas of their lives that are separate. When cerebral illness strikes, this enmeshment may become a disaster.
6. Pre-existing family issues are intensified, often these are compensated or partially worked through but become manifestly pathological after die onset of the illness (Cases A and B). Other situations include intensification of Oedipal rivalry, and especially guilt over the feeling of triumph when a parent declines ; overreaction or assumption of complete caretaking roles by one family member who eventually becomes exhausted, resentful and angry or depressed in response to burden (especially if this person has depressive propensities in his personality, and cannot negotiate some reasonable adaptation); chronic marital rifts that may decompensate when one member has an organic brain syndrome.7 Marital equilibrium may be kept by constant marital conflict, or impulsive drinking that holds the family together, or by one spouse being constantly absorbed in work functions felt to be valuable for the family. When one person in these collusive transactions becomes demented, the entire defensive system may collapse.
These pre-existing difficulties become even worse if there is a lack of negotiating skills in the family. This often happens when the family is either naive, overly repressed or extremely religious in their background, or extremely narcissistically vulnerable and prone to collusive relationships that cannot be discussed.
7. Blame and demands felt to come from other people but also emanating from self reproaches may lead family members to see themselves as required to do endless things for patients, and eventually to become overwhelmed. Often this sense of blame and demand is projected by the family onto caretakers, especially the hospital, and a situation occurs where the family will put pressure on the patient to be dysfunctional so that the hospital will take over. This is an example of what Murray Bowen has called "triangling," that is, the hospital is felt to balance an unstable relationship between patient and family.8
A psychiatric consultant was called to evaluate a 73-yearold man after cataract surgery and to arrange for transfer to a psychiatric service or a nursing home because of recurrent psychotic episodes and the ward's fear of violence. The patient had been hospitalized at the family's demand for the same difficulties. Examination during the day revealed a calm man with mild to moderate brain impairment, but capable of grooming himself and comporting himself reasonably. The psychiatrist met wiüi the ward staff and with the family, and suggested changes: substitution of a neuroleptic for a sedative given at night when the difficulties occurred; keeping lights and radio on, and moving the patient near the nurses' station so that there would be people around. Much improvement was reported the next morning, and the patient was discharged a few days later. However, a few weeks lateT the patient was readmitted. Despite careful instructions by the psychiatrist, the patient was kept by the family in a dark lonely part of die house and given sedatives. A psychotic episode ensued, and die patient was returned to me emergency room, where again, he was kept in a dark part of the ward, given sedatives, and had another psychotic episode. The psychiatrist repeated the advice, but eventually the family complained to the hospital director about poor care given to the patient, and the difficulties were compounded.
8. Misestlmation of the patient as passive, when he is actually an active part of the process.
Case B continued
The 37-year-old patient put enormous pressure on his parents by running off to the home of a former girlfriend and running away from the hospital back to his parents' home. This and other activities showed quite clearly that his cognitive deficits, although significant, did not preclude enormous activity on his part to provoke his parents and hospital caretakers and to discharge the hostility he felt about the dependent relationship he had with both.
The patient with organic brain disease may be extraordinarily humiliated at the new dependency and helplessness and may exploit the new situation, enviously attack caretakers and control those around him, who believe him to be passive and incompetent. The patient's shame at his newly dependent predicament cannot be stressed too strongly. Often the patient will seem not to understand tliat the obtuseness is a method of controlling and discharging hostility that may be mistaken for a cognitive deficit.
9. Impact of the process on the patient. This increased dependency and shame often compounded by envy and hostility toward caretakers may result in a depression, the effects of which are superimposed on the cerebral pathology itself. Such pseudodementia was found in cases A and B. and responded well to specific treatment for depression, in case A, electroconvulsive therapy and antidepressants, and in case B, antidepressants alone. The humiliation of such patients in a dependent role is usually overlooked. If the therapist is unaccustomed to dealing with shame (the feeling of being exposed as defective before other people) and is accustomed to dealing with fantasies involving transgression and guilt me situation becomes more confusing. For the therapist sensitive to shame, the parts of the process that lead to reactive depression will seem obvious.
10. Neurotic countertransference on the part of the therapist. By neurotic countertransference, I mean countertransference proper; that is, specific unresolved issues of the therapist's life transferred onto the patient or family, and not simply a reaction to the prevailing process. Such countertransferences include unresolved issues in the therapist's relationship to family members, especially parents. Prominent are feelings about their deatiis, feelings of triumph over the parents, feelings of competition and greed with siblings, and so forth. Such countertransference feelings also include an intolerance of me affects so prevalent in the families of such patients: futility, depression, shame, and a host of others. For the therapist who has not acknowledged and worked out these issues, the risk of colluding with the family (often by assuming that the situation is hopeless) is extremely high.
THE CONDUCT OF THERAPY
The ultimate goals of psychotherapy are the minimization of the effects of me deficit by renegotiating family goals and the promotion of learning from experience. However, it is rare that this can be done unless the therapist has developed an empathie therapeutic process. The family is usually seen at a time when it is overwhelmed, and when emotional and material resources are near exhaustion. Family members are quite likely to see the merapist's interventions as blaming them or making demands on them at a time when they cannot tolerate blame or demands.
A common sequence of effective family therapy with the patient with organic brain disease is as follows:
1. The empathie sharing of failed containment. This should precede the formal work-up. The therapist, when assembling the family, should discuss each member's experience in performing for the patient functions that ordinarily were done by himself. By asking directly and tactfully whether there is agreement on the deficits the therapist will give permission to talk about them. Often this opens communication mat has been blocked by the patient's confabulation, his anger, or his catastrophic reactions. In an empathie atmosphere where the therapist as caretaker makes contact with otJier caretakers who are supposed to provide containment for the patient, family members are often able to talk without guilt and without blaming others to assuage the guilt. Once me therapist makes empathie contact with the part of each caretaker who feels helpless, exhausted, inadequate, and overburdened, much of the initial tendency of the family itself to blame and demand diminishes. If this empatiiic sharing of containment function is bypassed, the escalation of family tensions may ensue to the point where the patient is extruded (Case C), Under high tension there may be splits and disagreements and injustices talked about in the family, and various factions in the family may precipitate splits among caretakers, doctors fighting with doctors, wards with wards, hospitals with hospitals. When blame, demands, and shame in the family are addressed in an empathie way, these tensions have a better chance of subsiding.
While tfie tensions of failed containment are operative, the family may experience even history-taking as humiliating, blaming and demanding. A full investigation of the family should be deferred until empathie contact is made with each family member and, however briefly, with other caretaking systems, including doctors. If this is overlooked, inquiry itself is likely to be regarded as wounding and attacking rather than helpful.
The therapist must be able to verbalize non-judgmentally, and to be able to directly talk abut fearful fantasies. He may, for example, ask the patient, "Do you think they'd like to be rid of you?" Or, "Do you think they're secretly dividing up your money or property, and wondering how much they get?" He may say to family members, "You may blame yourself for resenting him, or you perhaps feel what is required of you is everything you have and that will use up all tfie family's resources and all of your energies and exhaust you completely." Or, "1 can see how you might very well have strong feelings about not being able to rely on him in the way that you used to. " The therapist, by making such empathie contact, and modeling free discussion of fantasies and fears, aids in the resolution of overwhelming anxieties and creates a forum where issues may be dealt wifh directly. He or she can also validate the difficulty of the caretaking task when it is no longer accompanied by companionship or sharing. What were unmentionable fantasies become anxieties to be explored openly with at least the possibility being minimized.
2. Family history. After the vulnerability to blame and demands has begun to subside, a generational family history should be taken. It is especially important to ascertain whether a complementary set of family role assignments prior to the onset of organic brain syndrome has been disturbed in a manner that requires working through (Cases A and B).
3. Reassessment. After the significance of the change in the patient is viewed in the light of the family's history, the more businesslike work of negotiation and problem-solving can begin. The actual status of the patient, both medically and psychiatrically, needs to be re-assessed. Often working hypotiieses concluded in an atmosphere of high tension need to be revised. Deficits can be explored within the family with great accuracy. A spouse can often tell whether the patient cannot balance a checkbook, cannot groom himself or herself, cannot find his way home, etc. Activities requiring foresight and planning can be assessed with extreme accuracy. These should be compared to the results of psychometric testing, and should be explained within the family setting. These form the realistic basis for later discussion of financial matters, caretaking, living arrangements, and deciding exactly who is to be responsible for what. This should of course include the patient.' There is a tremendous advantage if the patient's primary physician can be included in at least one such family session. A second look under circumstances of lowered pressure often reveals significant diagnostic work, eg, to establish whether dementia is truly primary degenerative dementia or whether it is subcortical or even compounded by a large number of medications.
4. Medication and management. All medications should be considered and reviewed in detail. Sedatives and minor tranquilizers especially after a very brief time have a disorganizing effect. Often very small doses of neuroleptics, beginning at dusk, given hourly, will avoid a "sundown" syndrome at night (Case C), exacerbated by social isolation and sedatives. Antidepressant medication or electroconvulsive therapy may be useful, 'and may even help with cognitive deficits due to pseudodementia previously attributed to cerebral damage. Antidepressants must be carefully evaluated for side effects, particularly cardiovascular ones. It is particularly important that so-called "management issues" functions not be split off and discussed apart from the rest of treatment and handled outside the family psychotherapy sessions. These management issues are part of the therapy, as are all containment issues, and should be discussed within me session. If they are handled somewhere else, there is a high risk that some serious containment issue will escape therapeutic scrutiny and jeopardize the whole treatment effort.
5. Negotiation. A realistic assessment of the family's involvement with the patient is a major area for therapeutic scrutiny. The therapist should try to make explicit whether there is agreement or disagreement about what family members tiiink should be required of each other and of the patient. Any constriction or limitation of family members' or the patient's activities should be made fully explicit and discussed. The patient's capacity and motivation to be responsible, at least for some of his actions, should be explored in detail. If too much regression occurs when the patient is at home, short visits should be suggested, often at some place other than the hospital or home. A two- or three-hour meeting for dinner at a restaurant is often a great relief, both to the patient and to the family. This takes place in an enjoyable setting where regression is less likely to occur. This is often a much more realistic plan than is the prospect of spending an entire weekend with a patient that the family cannot really tolerate for longer than a few hours. The patient in turn picks up a sense that a short dinner visit is likely to be quite pleasant, as opposed to the weekend, when he or she is often resented and ignored.
6. Continued support. Often the families of the OBS patient derive much benefit from multiple family groups9 consisting of several families facing similar predicaments. Such groups provide continued support as well as opportunities for learning and for sharing powerful emotions - shame, guilt, anxiety, depression - with tìiose whose situations are similar enough so that candor and genuine support can take place. Such groups can be psychotherapy groups led by a therapist or self-help groups and organizations run largely by family members themselves. In either case, family members gain a great deal by identifying with those in similar positions - caretaker, child, surviving spouse - and ego strength becomes additive. People gain enough support so they can learn to cope with illness and make the best possible decisions about matters they could not previously discuss.
In summary, psychotherapy is often indicated for families of patients with chronic organic brain syndrome. This psychotherapy is not simply support and reassurance, but definitive. Working through, however, is on me level of family or larger unit systems, which includes all caretakers. Such working through concerns issues such as ignorance, denial, irrational role assignments, failure of justice, retardation of maturation, amplification of pre-existing issues, blame and demand, mis-estimate of either patient or family in impacting on each other.
The therapist involved in such treatment must have unusual skills. He or she must be able to conceptualize containment functions within the entire family systems and of larger caretaking systems as they impact on each other. For example, when an anxious family attempts to relocate a patient into a hospital, or divide caretakers so that they fight with each other, these systems skills may be extraordinary. The therapist must also be adept at working with countertransference, that is, the strong affects stirred up by the family situation: anxiety, futility, depression, or neurotic countertransference enhanced by unresolved issues operative in the therapist's own family. Mastery of countertransference and the ability to work with it is crucial in any therapist who attempts to free up a family process with a member with organic brain disease and substantially alter the overall morbidity resulting from the deficit.
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7. Lansky M: Masks of the narcissistically vulnerable marriage. International Journal of Family Psychiatry, in press.
8. Bowen M: The use of family theory in clinical practice. Compr Psychiatry 1966; 7:345-374.
9. Lansky MR. Bley'CR, McVey GG, et al: Multiple family groups as aftercare. IntJ Group Psychother 1978; 28:211-224.