Since the start of the AIDS epidemic more than two decades ago, doctors, caregivers and patients themselves have observed that some people with the disease experience declines in brain function and movement skills as well as slight or sudden shifts in behavior and mood.
These are symptoms of a neurological disorder called HIV-Associated Dementia (HAD) or AIDS Dementia Complex. The syndrome frequently appears in later stages of AIDS. It is usually—although not always—associated with both an increase in viral load, which is the amount of HIV found in the blood, and a drop in the number of disease-fighting blood cells known as CD4 cells. Experts believe this group of symptoms occurs as a result of HIV infection of the brain, damaging the central nervous system, and in some cases peripheral nerves as well.
There is no “typical” course of the ailment. Sometimes it remains relatively mild; other times it may be severe or progress rapidly. Some people experience only cognitive disturbances or mood shifts, while others struggle with a combination of mental, motor and behavior changes. How much these changes disrupt a person’s day-to-day life differs from one individual to the next and from one stage of the disease to another.
In part because it varies so much from person to person, HAD is one of the most poorly understood aspects of HIV disease. However, since people coping with HIV often need to take many medications on a complicated timetable, maintain a regular schedule of doctors’ appointments, keep track of paperwork for insurance and other benefits, and perform additional tasks that demand significant organizational and cognitive skills, a diagnosis of HAD can present obstacles to their ability to maintain control over their lives and their health, and a challenge to caregivers, partners and others who want to help.
Getting a handle on HAD has always been difficult, because side effects from medications, other HIV-related infections, nutritional imbalances, depression, and the anxiety of coping with a deadly illness can all produce cognitive, behavioral and mood disturbances that mimic HAD. Moreover, because the neurological changes often develop gradually, it can be a challenge to determine exactly when isolated incidents or symptoms should be given a diagnosis of HAD.
Before the arrival of highly active anti-retroviral therapy (HAART) in the second half of the 1990s, estimates of the percentage of people with AIDS who would develop HAD ranged as high as two-thirds. Many specialists, however, believed that the true figure was closer to 20 to 30 percent. More recently, experts have estimated that less than 10 percent of people on HAART develop HAD. However, because people with HIV are living longer than ever before, a greater number could ultimately develop the disorder, perhaps in its milder forms.
Advances in HIV therapy also have changed the course of the ailment. Pre-HAART, when patients with full-blown AIDS generally died relatively quickly, dementia frequently struck with severity and signaled the start of a speedy decline toward death. More recently, some experts and researchers have noted that patients on HAART may experience a much slower and more prolonged deterioration in cognitive and other skills associated with dementia.
Unlike many of the infections associated with HIV and AIDS, HAD has a wide range of possible symptoms, which can vary greatly from one person to the next. And few of the symptoms are exclusive to HAD, which can greatly complicate its diagnosis.
The symptoms of HAD fall into three broad categories:
Cognitive: problems in concentration (difficulty following the thread of a conversation, short attention span, inability to complete routine tasks, trouble finishing a sentence); memory loss (trouble recalling phone numbers, appointments, and medication schedules, forgetting agreements or previous conversations); and a generalized slowdown in mental functions (difficulty understanding and responding to questions, loss of sense of humor or wit).
Motor: poor coordination, weakness in legs, difficulty maintaining balance, tendency to drop things, decline in clarity of handwriting, loss of bladder or bowel control.
Behavioral: personality changes (increased irritability, apathy toward loved ones or life in general, loss of initiative, withdrawal from social contact), mood swings (depression, excitability, emotional outbursts); impaired judgment (impulsive decision-making, loss of inhibitions); and, on occasion, symptoms of psychosis (hallucinations, paranoia, disorientation, sudden rages).
Cognitive problems are often—although not always—the first to become apparent to a person with HAD, as well as to family members, friends, caregivers and health care providers. Motor and behavioral changes, if they occur, frequently become evident in later stages of the syndrome.
Many factors can cause the same symptoms as HAD, so making a correct diagnosis is a complex and challenging task. Depression, other psychiatric disturbances, reactions to medication and nutritional deficiencies can all lead to similar symptoms, as can infections common among people with AIDS, including toxoplasmosis, lymphoma, progressive multifocal leukoencephalopathy (PML) and cryptococcal meningitis.
An accurate diagnosis of HAD, therefore, requires a comprehensive examination that generally includes a mental status test, a brain scan, and lab tests on the cerebrospinal fluid (a fluid that bathes the brain and spinal cord), which is obtained through a procedure known as a spinal tap or lumbar puncture. A mental status exam can help identify whether a person is suffering memory loss, difficulties with concentration and other thinking processes, mood swings and other symptoms. The healthcare provider will often ask that the test be repeated to ensure accuracy. Initially these changes can be barely noticeable; it takes a skilled clinician to pinpoint changes at the earliest phase of the condition. A formal diagnosis requires that the behavior/memory changes be corroborated by a third party.
CT and MRI brain scans can reveal whether someone has suffered damage to brain tissue and can help rule out other possible causes of the symptoms. And the cerebrospinal fluid of people with HAD frequently contains high levels of HIV as well as greater amounts of certain proteins, although such findings suggest rather than prove that someone is suffering from the syndrome.
Because no single test definitively answers the question of whether someone has HAD, the final diagnosis is made by weighing all the evidence together. Compounding the difficulty is the fact that HAD can sometimes coexist with AIDS-related infections or other factors, and determining the exact cause of each particular symptom can be virtually impossible. Time and repeated measures are helpful in confirming a diagnosis.
Although there is no cure for HAD, AZT, an anti-HIV drug approved by the Food and Drug Administration in the late 1980s, can help improve cognitive functioning in people with HIV. While many drugs are not able to penetrate the brain, AZT and some other antiretrovirals has been shown to cross the blood-brain barrier, which is one reason why AZT may improve symptoms of HAD. A major problem, however, is that although larger doses of AZT apparently work best, people with HAD or advanced cases of AIDS may be highly sensitive to the potentially toxic side effects of the drug.
There are several other anti-HIV drugs—d4T, abacavir, and nevirapine, for example—that are known to cross the blood-brain barrier. Some specialists believe that these drugs may also prove effective in treating HAD, although the benefits have not been definitively proven. Much more study on treating HAD is necessary before any firm conclusions can be reached.
In addition to treating HAD itself, it is important to find ways to treat the symptoms, when possible. Anti-depressants, anti-psychotics, and anti-anxiety drugs can help relieve some of the mental distress people with HAD may experience. However, some of these medications may cause complications when taken along with antiretroviral therapy or other drugs, so caution is needed in choosing the best approach. Consultation with an AIDS-knowledgeable psychiatrist is recommended.
Advice For Caregivers
Caring for someone with HAD can be stressful. Part of the difficulty is that caregivers must cope with not just the practical implications of the situation—making sure the person remembers to take medications on time, for example—but also with your loved one’s own fears and despair about the deterioration of his or her abilities.
Encouraging someone to obtain a proper diagnosis is an important step. However, because the loss of control can be terrifying, some individuals with HAD may be unwilling to admit that they are suffering from dementia, and caregivers should be prepared for possible resistance to seeking help. It is important to remind the patient as gently as possible that there may be ways of addressing and improving the situation once the diagnosis is clarified.
This is also the time to make sure that all necessary legal documents—healthcare proxies or advance directives, durable powers of attorney, wills, and so on have been prepared with the help of a knowledgeable attorney.
Just as in the early stages of Alzheimer’s or other cognitive disorders, there are steps a caregiver can take to make the situation as manageable as possible. Many of these require nothing more than a little insight into the patient’s situation and are designed simply to create as stable and secure an environment as possible.
Keep the home environment familiar. Memory prompts, such as calendars, lists, beepers, and pill boxes, can be a tremendous help in alleviating frustration. During conversation, it is important to maintain eye contact, repeat the names of visitors, and talk slowly and clearly in order to reduce stress and anxiety. If the person needs to be hospitalized, decorating the room with familiar items—such as family photographs and favorite mementos—can help create a soothing atmosphere and keep a person with HAD calm.
For caregivers themselves, the demands of coping with a person suffering from dementia—whether related to AIDS or another disorder—can be challenging. Feelings of depression, guilt, rage, despair and fear are common. It can be crucial for caregivers to seek help themselves, whether in the form of individual counseling or support groups with others in similar circumstances.
That help also frequently takes the form of hiring outside assistance, such as a home health aide, to help care for an individual with HAD. In addition, many social service agencies provide consultation, respite for caregivers, daycare programs, and other practical support services. Some caregivers feel ashamed that they cannot do everything and are reluctant to access such support, especially if the one who is ill resists. But getting the support you need in order to maintain your ability to carry on with caregiving responsibilities—even over possible objections—can be a genuine expression of love and concern.
Home Care Guide for HIV and AIDS, 1997; American College of Physicians, P.O. Box 7777, Philadelphia, PA19175-1140; (800) 523-1546 x2600; www.acponline.org/public/hiv/contents.htm
This website publishes an online magazine and other materials on all aspects of HIV/AIDS, including dementia, and also offers a bulletin board, chat rooms and additional opportunities to interact with others.
AIDS Dementia Complex, 2002; Project Inform, 205 13th Street, Ste. 2001, San Francisco, CA 94103; (415) 558-8669; www.projinf.org/fs/dementia.html
HIV InSite, UCSF School of Medicine, http://hivinsite.ucsf.edu
Comprehensive, up-to-date information on HIV/AIDS treatment, prevention, and policy from the University of California San Francisco School of Medicine.
Caring for someone with AIDS at home: A Guide, 2001; U.S. Centers for Disease Control and Prevention, 1600 Clifton Rd., Atlanta, GA 30333; (404) 639-3311; www.cdc.gov/hiv/pubs/brochure/careathome.htm
Practitioner’s Guide to the Neuropsychiatry of HIV/AIDS, ed. Wilfred G. van Gorp, Stephen L. Buckingham, 1998; Guilford Publications, 72 Spring St., New York, NY 10012; (800) 365-7006; www.guilford.com
Neuropsychology of HIV Infection, Igor Grant, 1994. Oxford University Press, 2001 Evans Rd., Cary, NC 27513; (800) 451-7556; www.oup.com/us
Mental Health and HIV Infection: Psychological and Psychiatric Aspects, Jose Catalan, ed., 1999; Taylor & Francis Group, 11 New Fetter Lane, London EC4P 4EE; 44 (0) 171-583-9855; www.tandf.co.uk
AIDS and the Impact of Cognitive Impairment: A Treatment Guide for Mental Health Professionals, 1995; UCSF AIDS Health Project, P.O. Box 0884, San Francisco, CA 94131-0884; (415) 502-4930; www.ucsf-ahp.org
Fact Sheet: Taking Care of YOU: Self-Care for Family Caregivers, Family Caregiver Alliance. www.caregiver.org/taking-care-you-self-care-family-caregivers
HIV/AIDS Bureau, Human Resources and Services Administration: A Clinical Guide to Supportive and Palliative Care for HIV/AIDS, 2003 edition, Chapter 10: Psychiatric Problems; hab.hrsa.gov/tools/palliative/chap10.html
Project Inform: AIDS Dementia Complex, 2002; www.projinf.org/fs/dementia.html
The AIDS Reader: Progression of HIV-Associated Dementia Treated with HAART, Vol. 12, No. 2, pages 69-74, 2002; www.medscape.com/viewarticle/429887
Journal of Mental Health and Aging: HIV-Associated Dementia and Aging, Vol. 8, No. 4, pages 295-306, 2002.
American Journal of Alzheimer’s Disease and Other Dementias: An Overview of AIDS Dementia Complex, Vol. 16, No. 4, pages 225-229, 2001.
Family Caregiver Alliance
785 Market Street, Suite 750
San Francisco, CA 94103
E-mail: [email protected]
Online support groups: www.caregiver.org/online-support-groups
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.
FCA's National Center on Caregiving offers advice and information on current social, public policy and caregiving issues and provides assistance in the development of public and private caregiver support programs.
For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer's disease, stroke, ALS, brain injury, Parkinson's and other chronic health conditions that strike adults.
U.S. Centers for Disease Control AIDS Hotline
(800) 344-7432 (Spanish)
(800) 243-7889 (TTY)
San Francisco AIDS Foundation
995 Market St., Ste. 200
San Francisco, CA 94103
Hotline: (800) 367-2437
Gay Men's Health Crisis
The Tisch Building
119 West 24 St.
New York, NY 10011
Hotline: (800) 243-7692
205 13th St., Ste. 2001
San Francisco, CA 94103
Hotline: (800) 822-7422
This fact sheet was prepared by Family Caregiver Alliance and reviewed by James W. Dilley, MD, Executive Director, AIDS Health Project, San Francisco. Funded by the California Department of Mental Health. © 2004 Family Caregiver Alliance. All rights reserved.