HIV-related brain impairment: from palliative care to rehabilitation

Abstract

Brain impairment is a distressing manifestation of human immunodeficiency virus (HIV) disease characterized by progressive cognitive impairment leading eventually to dementia and death. Patients with advanced brain impairment are clinically difficult to manage and usually require residential care. In 1997, a brain impairment unit opened at the Mildmay Hospital UK in London to meet the needs of this patient group. It began as a nurse-led unit, has adopted an interdisciplinary approach to care and aims to maximize the quality of life until death. In a study of patients admitted during its first year, it emerged that while the condition of many patients declined resulting in death, some patients improved sufficiently with rehabilitation and ongoing medical treatment to return to independent living. The possible reasons for this are discussed in this article. Study findings have not only affected the approach to care but have also highlighted some unexpected problems; the importance of adopting an interdisciplinary approach in caring for the group of patients becomes evident.

Cognitive and Neurologic Rehabilitation Strategies for Central Nervous System HIV Infection

“…cerebral toxoplasmosis or progressive multifocal leukoencephalopathy) or brain tumours. A combination of rehabilitation techniques and cART led to patients with HIV-related brain pathology being discharged with better function rather than dying within the unit [ 21 •].…”

Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence

“…56 The historical distinction between early/late stage disease that placed palliative care as solely terminal is inappropriate in the light of the clinical evidence that patients need pain and symptom management (and psychosocial care) throughout the disease trajectory. 5 6 Nursing homes, 57 58 brain impairment units, 59 hospices, 60 hospital palliative care teams, 61 62 prison hospice, 63 and hospital paediatric wards 41 face challenges of providing both curative and palliative care for people with HIV/AIDS. Therefore, clinical need throughout the disease trajectory and the range of settings in which patient care is delivered speaks of the need for specialist education and the inclusion of palliative care expertise into the multiprofessional care team.…”

The Changing Epidemiology of HIV Infection: New Challenges for HIV Palliative Care

“…She remained adamant that no one should be informed of her diagnosis. Patients can be restored to independence and a good quality of life even after being considered terminal by their HIV specialist, nurses, and family 14,15 . However, the unpredictable response to therapy in the setting of advanced HIV disease means that determining prognosis is often dif®cult.…”