Psychotherapists working with people with HIV/AIDS must be prepared to assess and provide effective psychosocial interventions for individuals who exhibit symptoms of HIV-associated central nervous system involvement. Appropriate psychosocial interventions for these persons often differs from traditional psychotherapy and counseling and. For the nonmusical clinician, evaluating the extent to which presenting symptoms are due to HIV-associated neuropsychiatric compromise or represent a reaction to the multiple stresses of living with HIV/AIDS can be a challenging and difficult clinical challenge, and requires skills that most clinicians did not learn during graduate training. For this reason it is essential for nonmedical clinicians to have a close working relationship with the client’s primary care physician since referring the client to a neuropsychologist or neurologist for a more complete evaluation when there is suspected organic compromise may need to happen quickly. As Ostrow (1996) notes:
“Both anxiety and depression can be accompanied by mild cognitive deficits such as poor concentration or short term memory difficulty. For the person with HIV-infection these symptoms can themselves be stressful, because they may be experienced as indicators of early HIV brain involvement. If the cognitive symptoms are mild and in keeping with the degree of affective dysfunction, the patient should be counseled that the symptoms will probably disappear when the anxiety or depression is adequately treated. However, if the cognitive symptoms appear to be out of proportion to the degree of affective involvement or they do not respond to adequate antidepressant or anxiolytic treatment, then a neuropsychological evaluation is indicated, even in patients with >500 CD4 cells.” (pp.871-872)
For the clinician engaged in long-term therapy with HIV-infected individuals, it may be easier to notice initial signs of cognitive or mood impairment than it is for clinicians just beginning to work with an HIV-infected individual, for whom the clinician does not have a baseline assessment of mood, affect, or psychological functions antedating his or her becoming symptomatic with HIV. When a clinician has regular weekly sessions with an HIV-infected client, very often he or she will be the first professional to recognize symptoms of physical, mental, or emotional impairment that indeed could be organic in nature. It is also important to note that some patients may be referred for psychotherapy specifically because of the cognitive changes that have been detected. Additionally some patients may present with complaints of cognitive compromise and the resulting emotional distress this deterioration causes as the reason they are seeking professional assistance.
Once clinicians have the necessary basic understanding of the common mental status changes that are associated with HIV disease, and specifically HIV-Associated Cognitive/Motor Complex, several important implications emerge for clinical practice that can guide appropriate treatment and assist the person diagnosed.
The following case illustrates the subtle onset of HIV related symptoms of central nervous system involvement, how the therapist’s own discomfort with the patient’s cognitive changes produced an attempt to protect the patient which delayed their dealing with these changes during the course of treatment, and the need for practical considerations in dealing with HIV-Associated Cognitive/Motor Complex.
Tony was a 33 year old entertainment attorney whose response to the sudden and unexpected breakup of his seven year relationship was to call in sick to work and spend a week drinking, using drugs and having anonymous sex several times daily. One morning, Tony called to discuss entering treatment, frightened that he was placing his job in jeopardy and feeling that his entire life was falling apart.
By the time Tony and his partner began to date both practiced safer sex, but Tony had spent years engaging in unprotected risky sex before it was known that HIV was sexually transmitted. Two years after beginning therapy, Tony discovered a lesion on his foot that was diagnosed as Kaposi’s Sarcoma. His diagnosis was a complete surprise to him because he had been feeling terrific, working out at the gym, and had no symptoms of any kind until he discovered the lesion. His initial reaction to the diagnosis was anger and denial.”
Over the three years following his diagnosis Tony lost over 40 pounds and became disfigured due to edema and lesions. Tony had always been an extremely articulate and intelligent man, who spoke very quickly and prided himself for thinking quickly on his feet. Over several months, the therapist began to notice that Tony was speaking slower and would take longer to respond to a question. There were often long silences during sessions, during which Tony appeared to be staring off into space, forgetting the thread of the conversation. Tony would become defensive when asked to answer questions on a mental status exam. The therapist rationalized not confronting Tony with these observations out of a desire to not increase Tony’s discomfort, but spent increasing amounts of time in his own supervision addressing his avoidance of the unpleasant realities of Tony’s diminishing cognitive abilities. It soon became clear to the therapist that he did not want to face and deal with his own discomfort about the mental deterioration of this well liked patient, and thus irresponsibly neglected to note these instances whenever they occurred.
One day Tony did not appear for his regularly scheduled appointment. When the therapist called Tony at his office to ask why he had missed the session, he sounded confused and said that he was certain that the appointment was the next day. The therapist assured him that that day was Tuesday, the same day and time they had been having sessions for the past two years. Tony admitted that this frightened him, and finally acknowledged to the therapist that he had recently noticed other indications of memory loss and a growing disorientation.
The session was rescheduled for the following day, and the therapist asked for and received Tony’s permission to telephone him a couple of hours before the session to remind him about it. During the session, Tony was asked his feelings about having to be called to be reminded about the appointment. This prompted him to rage about “fucking AIDS, and how it was taking over his life, and that he was losing control of his body and mind.” Soon he burst into tears, pounded the couch and said, “Needing you to remind me about our appointment makes me feel the same way that knowing I’ve known the name for this thing that I am sitting on for the last 30 years, yet for the life of me I can’t remember now what it is called. I can’t really continue to practice law since I’m not even aware that I’m missing important details in contracts I read.”
As the therapist listened to Tony, he became teary and overcome with sadness for this man. Inquiring about Tony’s fears and feelings regarding his memory loss became a manageable way for Tony to really talk about how AIDS was robbing him of the rest of his life. The psychotherapy began to focus on what concrete ways Tony could compensate for his memory loss, and all of the feelings accompanying his need for these accommodations to his neuropsychiatric impairment. Tony’s memory loss required him to ask his friends more directly for help. His increased dependence upon other people to help him adjust to losing his memory raised a host of feelings that were explored continuously until his death a few months later. As in the previous case, it was only at the urging of the therapist that Tony reported these symptoms to his primary care physician, who seeing Tony only monthly hadn’t noticed the mental deterioration. A neuropsychological evaluation revealed a probable diagnosis of an HIV-related dementia. These results precipitated discussions about the need for him to stop work and go on disability.
As Tony’s case illustrates, psychosocial interventions with clients who have HIV related neuropsychiatric impairment require the use of a variety of skills. Traditional psychotherapy can help the affected individual express his or her feelings about the condition, or even be the place where their mental or emotional disability is first addressed. With these patients, it is often useful for the mental health professional to take on a counseling role, which includes concrete problem solving in helping the patient make necessary adjustments for coping with disorientation, memory loss, reduced mobility, labile moods and even psychotic decompensations. In addition to therapy and counseling a case management approach is also beneficial in terms of helping mobilize and prepare the entire group of individuals impacted by the client’s increased mental and emotional deterioration.
Many patients complain that it is the simple things that now create the most frustration. When clinicians hear patients report difficulty in dealing with formerly easily handled activities of daily living, they often feel in a quandary as to how to be most helpful while remaining clinically appropriate. When a patient with HIV- infection reports experiencing diminished mental capacity, a more active and at times even directive series of interventions may be appropriate to insure that treatment remains useful to the patient in his or her new and cognitively limited state. Unfortunately actively making suggestions or being directive is contrary to traditional psychoananalytic training. Even many nonanalytically trained therapists are cautious and reluctant about changing how they work with patients in the midst of an ongoing treatment. These interventions should be conceptualized as counseling techniques, rather than psychotherapy per se. Counseling differs from psychotherapy in that it focuses on concrete problem solving, and is often exactly what a patient experiencing the onset of or advanced HIV related dementia is most in need of from his or her mental health professional.As the table (Buckingham & Van Gorp, 1988) indicates there are several practical recommendations that can greatly assist the person struggling with cognitive changes and the limitations that these changes represent. These include the conspicuous placement of a large calendar near the bedside or living space so that the individual may remain
Practical Considerations and Recommendations for Persons with HIV-Associated Dementia Forgetfulness
1. Use calendars and appointment books.
2. Place Post-It notes in conspicuous places as reminders.
3. Make lists (questions for your physician, groceries needs, people to call, etc.).
4. Develop list for important things to check when leaving the residence (stove, lights, etc.).
5. Use alarm clock as a reminder for medications.
6. Keep a list of medications with dosages and times taken.
7. Ask for help if medications must be taken at different times and dosages.
8. Keep a journal detailing complex projects.
9. Use a cassette tape recorder to dictate thoughts and questions.
Purchase a noise-activated key chain.
11. Keep a telephone log and important numbers by the phone.
1. Allow more time to collect your thoughts and for conversations.
2. Don’t hurry; give yourself permission to take your time.
3. Keep talking. Good conversation is good practice.
1. Don’t drive if unable to do so.
2. If able to drive, plan routes in advance, allow plenty of time, and take a friend along when you can.
3. Use verbal directions instead of maps.
4. Realistically assess whether you are still able to drive at night.
5. Cease driving at night if your vision has become too impaired for you to be able to do so safely.
Depression and Social Withdrawal
1. Plan recreational activities.
2. Be an active participant.
3. Rekindle old hobbies and interests or create new ones.
4.Directly ask friends and family members to initiate social contacts and instruct them not to take “no” for an answer unless you are too ill to socialize.
Concentration Problems, Inattentiveness, or Distractibility
1. Try to limit distractions by confining your activities to a single task.
2. Meet with people one at a time.
3. Break large tasks down into more manageable jobs.
4. Turn the TV off when conversing or needing to concentrate.
5. Don’t drive in heavy traffic.
Problems with Sequential Reasoning or Multistep Tasks
1. Don’t take on new or unfamiliar job responsibilities.
2. Avoid tasks in which speed of performance is important.
3. Simplify such things as meal preparation.
4. Plan activities when you are at your best e.g., a “morning person”.
oriented to the month, date and year. The use of frequent notes, reminders and appointment books serve as important memory aides since research has shown that patients with HIV-Associated Dementia benefit from cueing and recognition approaches (Van Gorp et al, 1993).
Because many patients with HIV-Associated Cognitive/Motor Complex present with motor and gait disturbances, living arrangements should avoid structures with many steps because the patient may fall or find climbing steps difficult.
The cognitive and motor slowing that these patients experience often make it difficult for them to function in situations that require quick decisions and action. For example, working in a busy office setting where the individual must act quickly may frustrate the mildly impaired patient who is in the early stages of the dementia process and may promote a sense of failure and lack of coping. With a patient who suffers from any level of HIV related cognitive impairment reports to the therapist that he or she is feeling increased levels of anxiety and/or depression, it is appropriate for the therapist to reflect back to the patient that his or her current mental and cognitive limitations may be contributing to their emotional distress and an overall sense of feeling overwhelmed. Needing to cease working is often a traumatic loss for the person with AIDS and brings with it a corresponding loss in self-esteem and self definition as a professional. Exploring potential options where the patient may be able to feel useful in a safe environment like volunteering at a local AIDS service organization or people with HIV or AIDS self help group can be a useful intervention.
Providing structure and a familiar environment will facilitate greater independence in activities of daily living than novel and ambiguous situations. Whenever possible, demented patients should be in environments that are familiar and that have sufficient structure and support. Unfamiliar environments with no one to assist with activities of daily living may promote increasing confusion in a patient with only mild dementia. Hospitalizations are often a time when the patient with even mild dementia feels easily confused and overwhelmed by being in a new and unfamiliar environment. The therapist should encourage the patient’s significant others to bring calendars, and other familiar photos or momentos to the hospital room to help orient the patient. In addition, placing important phone numbers next to the hospital phone can help reduce anxiety. One man, a former actor who had been able to remember pages of scripts, was no longer able to even remember his home phone number near the end of his illness. During his final hospitalization his lover taped a note to the telephone that said: “For help call…” Upon which he had written both his home and office number, so that his lover could easily contact him at any time.
Patients with HIV-Associated Cognitive/Motor Complex may have sufficient motivation to undertake activities or tasks but may lack the necessary initiation to actually begin the activity. This is common to other subcortical disturbances (eg. Parkinson’s Disease) and assistance with initiating desired activities and tasks by family members or loved ones may provide the crucial impetus for actually starting a desired activity.
If the patient is a single parent the therapist must do a careful assessment regarding whether the patient’s reduced cognitive and concentration skills endanger the children, or could contribute to their being neglected or abused. One woman with advanced AIDS was having difficulty finding her way to the therapist’s office where she had been a patient for several years. One day this woman reported to the therapist that she had kept her young daughter waiting after school because she was wandering around the neighborhood lost and confused. When she had not claimed her daughter after an hour, the school called the woman’s mother who came right away and brought her granddaughter to her apartment. The child was understandably frightened by not having her mother keep to their regular schedule. Once the therapist learned about this incident she called a family therapy session with the patient, the patient’s parent and siblings in order to develop a plan that would insure that the young daughter would be safely cared for. This practical management approach is not a traditional psychoanalytic or psychotherapeutic one, yet this kind of creative and often nontraditional approach is needed in order to provide a comprehensive level of psychosocial support to patients suffering from HIV/AIDS related cognitive impairment.
Another sensitive issue is at what point a referral to an HIV related day treatment program is an appropriate intervention by the therapist. When introducing this issue, the therapist must be sensitive and skillful in raising a broad variety of issues. A central issue in attempting to enlist family, friends and other caregivers in helping the patient who is cognitively impaired is the treading of a fine line in avoiding having people do things for him or her that he or she can still do for themselves. Developing ways to insure that the patient is compliant with an extensive schedule of infusions and oral medications is another example of how the therapist or family and friends need to function as a case manager for the individual experiencing HIV related memory loss and disorientation.
As illustrated by the above described case where a woman was too disoriented to remember the location of her child’s school, patients with advanced HIV related cognitive impairment may be too disoriented to be able to travel unaccompanied to or from the therapist’s ( or any other health care professionals) office. If the patient does not have a companion, friend or aide to insure that they arrive safely, it may become necessary for the therapist to consider doing home visits if the patient still wishes to continue having sessions. Obviously there is a greater time demand on home sessions if the travel time to and from the patient’s home is figured in.
In some cases the patient may live too far away from where the therapist either works or lives for home visits to be practical. Where they are a viable option, these home visits serve multiple purposes. They have the potential to provide the patient with a source of support, comfort and continuity in his or her life that may be all to rare due to the complications associated with advanced and terminal stage AIDS. In addition, a home visit provides the therapist with the opportunity to assess what level of care the patient is receiving or in need of if he or she is still capable of living independently. In some cases it will be obvious form the condition of the home, apartment, kitchen and undiscarded medical waste and household garbage, that the individual should no longer be living alone. A home visit then gives the therapist entry to raising this painful and difficult issue with the patient.
When due to neuropsychiatric involvement the patient is no longer able to concentrate long enough to follow the thread of a normal conversation during a psychotherapy session, there are ways that the therapist can be comforting and helpful that are not traditional forms of psychotherapy. One useful option is for the therapist to bring meditations, poetry or visualizations that the therapist can read to the patient, in the hope of calming an agitated state and temporarily reducing fears. One of the authors is trained in hypnotherapy and finds doing trance induction and relaxation and pain control work while a patient is in trance to be a very effective clinical tool. Similarly, guiding a patient in visualizations is very useful if the therapist makes some audio tapes and leaves them with the patient, so the patient can experience this kind of relief in between sessions.
Not surprisingly, family members or significant others are often frustrated by the physical and mental debilitation their loved one has experienced. There may be a “need to blame” present, and unconsciously, they may act this out by attributing a patient’s forgetfulness to noncompliance to willful stubbornness or manipulation. This is a common occurrence, and the clinician must be vigilant to educate those close to the demented patient what actual limitations exist for their loved one. Slowing, confusion and forgetfulness are all characteristics of the HIV-Associated Dementia and when present likely do not reflect intentional manipulation but rather, actual brain changes resulting in clinical symptomatology.
Providing information and educational resources to patients diagnosed with more or less severe cognitive decline associated with HIV is another important factor in HIV care. Many patients have little or no understanding of neurological functioning or the diseases that affect cognition. Thus, it is often a useful intervention for the therapist to suggest a “family” session for the patient and all of the important caregivers in his or her system. The focus of this session should be psychoeducational in which all present are educated about the nature of HIV dementia, what new symptoms to be on the look out for, and suggestions for managing the cognitive impairment.Most patients upon hearing the term “dementia” envision the most severe clinical characteristics, usually those associated with Alzheimer’s Disease, such as complete memory loss and vegetable like mannerisms. Helping patients to better understand neuropsychological functioning and the kind of changes associated with sub-cortical disease will greatly reduce the fears and worries of those affected.
Assessment of clinical depression is important in any patient with HIV, but this is especially true when questions arise regarding the patient’s mental functioning. When slowing, forgetfulness and concentration problems are present, the clinician must attempt to differentiate the effects of depression from early signs of the HIV-Associated Dementia. This is best done by inquiring into the mood state of the individual and being alert to atypical signs of pessimism, feelings of worthlessness, and suicidality. Since most patients diagnosed with an HIV-Associated Dementia are aware of their declining mental capabilities, they may be understandably depressed. This, coupled with the well established and broad range of psychosocial assaults associated with HIV, creates a high risk situation for patients who are also experiencing cognitive impairment. If signs of depression are present, the depressive condition should be appropriately treated. Depression can further encroach upon the mental capacities of an already impaired individual.
Assessment of suicide potential is also important in these patients in light of the increased incidence of depression in patients with subcortical disease (for instance, as is true in Parkinson’s or Huntington’s disease). Crisis resources should be available to the clinician involved with this population in the event that an impaired patient experiences suicidal intent. The unique mix of psychosocial trauma with a probable biologic contribution to depression in this group creates fertile ground for suicidal intent and planning. The clinician must be vigilant and resourceful when signs of suicidality are present.
It is important for psychotherapists who work with people with AIDS to improve their skills in differentiating between an individual who is suicidal and one who rationally wishes to choose what is known as “self deliverance” from the ravages of the end stages of a terminal illness. Most patients with end stage AIDS who discuss wanting to end their own lives often suffer from inadequately treated pain or an untreated depression. Once these conditions are successfully treated, some people still feel that “enough is enough” and it is time to die. Self deliverance is about dying with dignity. This is not always simply about the control of pain in end stage illness. It is about suffering, and suffering can take many forms that compromise quality of life. The Medical Director of San Francisco General’s AIDS Clinic, Dr. John Stansell, has been quoted as saying, “The simple fact is that there are some patients for whom we cannot make death a tolerable process”(Guthrie, 1996, as quoted in Holtby, 1997). Many patients seen by the authors who discuss wanting to have the means available to end their own lives do so long before the onset of dementia. These same individuals express the fear that if they become demented they may lose their ability to act on their desire to rationally end their life. This is where there are serious ethical issues for the professional who supports a patient’s right to choose the timing of his or her own death. Clearly once an individual has lost the ability to think clearly there is a question about how rational can the decision to end one’s life be?
In one study 83.3% of people with AIDS said that euthanasia or assisted suicide was a choice they were considering, and reported that the knowledge that they could take their own lives helped them to cope. Many stated that they liked to be in control of all aspects of their lives, so it made sense that they be in control of their deaths (Ogden, 1994). Many PWAs fear that once they become demented they will lose their window for “self-deliverance,” and discuss with trusted friends concrete plans for being helped to end their own lives. Even for health care professionals who believe in assisted suicide, one foundation of this belief is the ability of the patient to make a rational choice for him or herself. Once a person has become demented he or may no longer be able to have the cognitive ability to initiate self deliverance. Therefore prior planning and specific instructions are crucial if this has been the planned choice of the neuropsychological impaired PWA prior to the onset of symptoms of dementia. Obviously this places enormous strains upon his or her care partner who will be responsible for initiating an assisted suicide.
Psychotherapy may also serve as a supportive environment for patients wishing to discuss estate planning, advanced medical directives, medical power of attorney and living wills. In addition to the legal issues inherent in these topics there are significant emotional ramifications to concretely planning for the end of one’s life that become complicated as cognitive impairment sets in. Because wills and other legal documents are sometimes contested after death based upon allegations of diminished mental competency, referral for neuropsychiatric evaluation is one way of possibly establishing the patient’s level of competency by a second mental health professional prior to death. It should be noted that compromised neuropsychological performance alone does not necessarily render a patient incompetent.
In many cases, countertransference issues arise for therapists who work with patients diagnosed with HIV-Associated Dementia. Professionals who work with cognitively impaired patients frequently experience countertransference problems because of their own inability to reverse the course of the mental deterioration. As the case cited earlier in this article illustrates, it is not helpful to treatment when both the therapist and patient avoid bringing up indications of the onset of symptoms of AIDS dementia complex during the course of psychotherapy. Presentation of symptoms of HIV- Associated Dementia gives both the patient and therapist concrete evidence of the fact that HIV disease is progressing, and this raises a host of understandable feelings, most often powerlessness and anger, that the clinician must be prepared to recognize in order for them not to interfere with effective treatment. These dynamics are particularly important for clinicians because HIV is still a relatively new, lethal, and predominantly sexually transmitted disease that was first identified in socially stigmatized groups. Identification and acknowledgment of countertransference issues are crucial and require the clinician to have adequate self-awareness to respond effectively.
Much of this chapter has discussed how the cognitive changes associated with HIV infection creates a clinical situation that stretches the boundaries of traditional psychotherapy and the role of the clinician. Given the current changes in health and mental health care delivery, such as managed care, clinicians who work with people with HIV and AIDS must be able to deal with a wide range of clinical problems and disorders. HIV Associated Cognitive/Motor Complex is a good example of how clinicians must respond to a greater range of clinical phenomena while at the same time be a specialist.
The interventions offered above can make a critical difference in the care and management of patients who have HIV-Associated Dementia. Through early detection and accurate differential diagnosis and sound clinical intervention, practitioners can increase the quality of care available to those effected by HIV-Associated Dementia.
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