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Providing a Stable Environment for AIDS

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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 groups 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 relatives and friends to bring calendars, and other familiar photos or mementos 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 sub cortical disturbances (e.g. 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 psychoanalytical or psychotherapeutic one, yet this kind of creative and often non–traditional approach is needed in order to provide a comprehensive level of psycho–social 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.

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 too rare due to the complications associated with advanced and terminal stage of 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 a 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 that the patient can experience this kind of relief in between sessions.

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