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  • 1. Redwood Caregiver Resource Center141 Stony Circle, Suite 200Santa Rosa, CA 95401(707) 542-0282 or (800) 834-1636Fax (707) 542-0552Email: rcrc@redwoodcrc.orgWeb: http://redwoodcrc.orgServing: Del Norte, Humboldt, Mendocino, Lake, Sonoma, Fact SheetNapa & Solano Counties HIV-Associated Dementia ComplexDefinitionHIV-Associated Dementia Complex (alsoknown as AIDS Dementia Complex) is a questions).progressive neurological disorder that canaffect persons who are infected with the q Motor: Difficulty with gait, balance,Human Immunodeficiency Virus (HIV). HIV- coordination, leg weakness, clumsinessAssociated Dementia Complex (HAD) is and deteriorating handwriting.thought to be a subcortical dementia and ischaracterized by cognitive, motor and a Behavioral: Impaired judgment (impulsivebehavioral impairments severe enough to behavior, poor decision making),interfere with an individual’s ability to function personality changes (apathy, socialoccupationally or socially. withdrawal, irritability), mood changes (extreme highs and lows, anxiety, emotional outbursts), and occasionallyFacts psychotic behavior (hallucinations, suspiciousness, grandiose thoughts).Although the precise incidence and prevalenceof HIV-Associated Dementia Complex is As the disease progresses, people with HIVuncertain, it has been estimated that as many dementia may become increasingly confused,as two-thirds of individuals with AIDS will weak and lethargic, and develop severedevelop dementia or related neurological memory loss. Each person experiences thesedisorders. The leading hypothesis regarding changes at different rates and not everyoneHAD is that it is caused by direct infection of develops all of these manifestations. The onsetthe brain by the Human Immunodeficiency and course of dementia is also variable, withVirus (HIV), the cause of AIDS. In 1987 the some persons sustaining stable mildCenters for Disease Control included HIV- dysfunction for long periods of time, and othersAssociated Dementia Complex as a primary exhibiting steady worsening within a fewdiagnostic condition that warrants a diagnosis months.of AIDS. DiagnosisSymptoms The symptoms of HIV-Associated DementiaThe early manifestations of HIV-Associated Complex can resemble those of other medicalDementia Complex may include: and emotional problems. Some of theseD Cognitive: Memory loss (difficulty recalling problems arise from treatable opportunistic appointment times, telephone numbers, or infections such as toxoplasmosis or crytococcal names), impaired concentration (trouble meningitis or from other treatable disorders keeping track of conversations or such as depression, anxiety, nutritional completing thoughts), and mental slowing deficiencies, recreational drug use and the side (not as “quick” as usual, slower at effects of medication. responding to In order to diagnose HAD and treat any 1
  • 2. reversible causes of dementia, a thorough experience. Legal assistance also may bemedi necessary to plan for the financing of care, arrange surrogate decision-making and tocal and neuropsychiatric evaluation is protect the rights of partners.recommended for anyone suspected of havingneurological complications related to HIV. Theevaluation usually includes a physical and Recommended Readingsneurological exam, blood tests, neurological AIDS and the Impact of Cognitiveprocedures (e.g., lumbar puncture, EEG, CT Impairment: A Treatment Guide for Mentalscan) and neuropsychological testing. Health Providers, 1997. UCSF AIDS Health Project, P.O. Box 0884, San Francisco, CATreatment 94143-0884. (415) 476-6430. The Effects of AIDS on the Brain:Although there is currently no cure for HIV- Information for Family and Caregivers,Associated Dementia Complex, recent studies UCSF AIDS Health Project, 1994, Box 0884,have shown that Azidothymidine (AZT) may San Francisco, CA 94143-0884. (415)help to improve attention, fine-motor 476-6430.coordination and memory. Additional antiviraltherapies and the possible effectiveness of Sometimes My Heart Goes Numb: Love andprotease inhibitors are being explored. Caregiving in a Time of AIDS, Charles Garfield, 1995, Jossey-Bass Publishers, 350In addition, a “treatment plan” usually consists Sansome St., 5th Floor, San Francisco, CAof making the situation more manageable for 94104. (800) 956-7339.the caregiver and the person with HAD. Forinstance, various strategies can be utilized to Caring, Commitment, and Choices, Yashelp individuals compensate for and minimize Branden, et al., 1994, National Association ofthe impact of lost abilities. Providing memory People With AIDS. Available from Bridgeaids (calendars, clocks, lists), structuring the Builder Media, 150 S. Washington St., Suiteenvironment to maximize safety and familiarity 204, Falls Church, VA 22046-2921. (800)(keeping home uncluttered, placing 878-8422.photographs around the house), and usingverbal and non-verbal cues (saying the Neuoropsychology of HIV Infection, Igorperson’s name, maintaining eye contact) are all Grant, 1994, Oxford University Press, 2001ways to minimize over-stimulation and keep the Evans Rd., Cary, NC 27513, Attn.: Ordersperson oriented. Dept. (800) 451-7556.Supportive and personal care services The Caregivers Guide: A Labor of Love,provided at home or in other residential Elizabeth Ross Denniston, 1993, Easternsettings are also available to aid families and Maine AIDS Network, P.O. Box 2038, Bangor,friends caring for someone with HIV-Associated ME 04402-2038. (207) 990-3626.Dementia Complex. Respite care, dayprograms, transportation, housekeeping andrelated community resources can help provide Creditsfor basic physical, social and emotional needs Boccellari, A. and Zeifer P., Management ofand assist in alleviating the burden of care. Neurobehavioral Impairment in HIV-1 Infection, Psychiatric Clinics of N. America, Vol.Caregivers can often benefit from individual 17(1):183-203, 1994, W. B. Saunders Co.,counseling, group therapy and/or support Philadelphia. PA.groups. Sharing information and discussingfeelings of frustration, fear, loneliness, guilt and Dilley, J.W. and Boccellari, A., 1988, HIV-depression with others can help decrease Associated Dementia Complex: Diagnosis andfeelings of isolation and validate the caregiving Management, Focus 3(8):3-4. 2
  • 3. 3
  • 4. Navia, B.A. and Price, R.W., 1986, Dementia CDC National AIDS ClearinghouseComplicating AIDS, Psychiatric Annals P.O. Box 600316(3):158-166. Rockville, MD 20849-6003 (800) 458-5231; (800) 243-7012 (TDD)Working Group of the American Academy ofNeurology Task Force, 1991, Nomenclature National AIDS Hotlineand Research Case Definitions for Neurologic (800) 342-2437; (800) 344-7432 (Spanish)Manifestations of Human Immunodeficiency (800) 243-7889 (TTY)Virus-Type 1 Infection, Neurology 41:778-784.Resources San Francisco AIDS Foundation P.O. Box 426182Family Caregiver Alliance San Francisco, CA 94142-6182425 Bush Street, Suite 500 (415) 863-2437San Francisco, CA 94108(415) 434-3388(800) 445-8106 (in CA)Web Site: http://www.caregiver.orgE-mail: info@caregiver.orgFamily Caregiver Alliance supports and assistscaregivers of brain-impaired adults througheducation, research, services and advocacy.FCA’s information Clearinghouse coverscurrent medical, social, public policy andcaregiving issues related to brain impairments.Forresidents of the greater San Francisco BayArea, FCA provides direct family supportservices for caregivers of those withAlzheimer’s disease, stroke, traumatic braininjury, Parkinson’s, HIV dementia and otherdebilitating brain disorders that strike adults.Reviewed by Alicia Boccellari, Ph.D., Director, Neuropsychology Services, San Francisco GeneralHospital. Prepared by Family Caregiver Alliance in cooperation with California’s Caregiver ResourceCenters, a statewide system of resource centers serving families and caregivers of brain-impaired adults.Funded by the California Department of Mental Health. Revised and reprinted December 1997. ©Allrights reserved. 4