University of New Mexico
Psychology 332
HIV-Related Dementia
By Terry Barsano
Jeff R., a 34-year-old homosexual man contacted a therapist at the urging of his partner and family. Jeff had been diagnosed eight months earlier as HIV positive and declared full-blown AIDS five months later with the appearance of opportunistic infections. Two months after that Jeff confided in his partner that he was afraid he was losing his mind. The medical doctor felt it was probably the stress and possibly side effects from the drugs Jeff was taking.
Jeff’s mother stated that she went to visit him and found him standing in the kitchen with a salt container and a drinking glass, afraid to move because he didn’t know what he was suppose to do with them. Jeff doesn’t remember the incident. A few days later his partner came home to find Jeff’s knee scraped and bleeding. He said he was taking his usual walk and suddenly realized he was lost. In his panic to find his way home he tripped and cut his knee.
These types of incidents are beginning to occur more frequently and are interfering considerably with Jeff’s ability to take care of his own needs or even to be alone for any length of time during the day.
Characteristics, Course, and Prognostic Indicators
HIV related dementia can be the initial indicator for the onset of Acquired Immuno-deficiency Syndrome. According to the DSM-IV-TR, it is characterized by a progressive development of at least two cognitive deficits (one being memory impairment) related to the effects of HIV infection (p147). Symptoms indicate a decline in the behavioral, physical and cognitive abilities of the individual. Early signs include difficulty with concentration, which may be interpreted as a reading problem or lack of attention. Some memory loss is also an early sign. Shortly into development there may be social withdrawal or an apparent lack of emotion (Ho 1989).
Many times someone with HIV related dementia finds it impossible to perform sequential mental chores. This often creates problems in the work or educational arenas. They become forgetful and tend to miss obligations (Sue,Sue,Sue 2000). As the disease progresses, it becomes impossible for the person to function without assistance. Their judgment is impaired and further memory lapses create a great deal of anxiety and frustration. Everything in the world becomes foreign, including how to care for oneself. A trip to the local grocery store can leave someone with dementia completely disoriented, as suddenly they cannot remember where they are or how they got there.
In advanced stages, dementia leaves the person with little or no knowledge of their surroundings, past, family or even their own identity. Motor skills deteriorate to the point where they no longer attempt to walk or feed themselves. Social skills also decline drastically until they no longer are able to form sentences and often become mute.
Without treatment, the prognosis is poor. Global cognitive impairment may be reached in two months from the time of early symptoms (Sue,Sue,Sue). With treatment, the disease is still progressive but not as rapid. Social support systems also make a difference in the person’s ability to maintain some type of independence. A 1998 study on HIV-associated dementia examined data from six European studies done to determine the impact of HIV-associated dementia on the health care system and the need for resources. The researchers determined that many cases go unreported, therefore patient services were not established based on the number of individuals with dementia.
Epidemiological Information
HIV/AIDS is no longer considered an epidemic; it is defined as a pandemic as it is a global issue. According to the American Psychological Association (2003), nearly two-thirds of the estimated 30.6 million people infected with HIV live in Sub-Saharan Africa. The political dynamics make it impossible to establish what percentage of those infected in Africa have also developed dementia. For the purpose of this paper, information will be used from research done in the United States and Europe.
Starace & Dijkgraaf (1998) note that data from the European Centre for the Epidemiological Monitoring of AIDS for the years 1988 - 1995 show an average of 6.33 percent of cases diagnosed in Europe presented with HIV-related dementia prior to other opportunistic diseases. The same research indicates the percentage is highest in infants, decreases to age 20 and then progressively increases with age. Starace & Dijkgraaf also cite research from Janssen et al. (1989 & 1992) indicating that of all the reported AIDS cases in the United States from 1987 to 1988, 30 percent presented with dementia and from 1987 to 1991 60 percent between the ages of 15 and 34 presented with dementia.
Bredesen (1989) cites research from Johnson and associates that indicates the onset of HIV Dementia is most often between the stages of seropositive and full blown AIDS, during the AIDS Related Complex. HIV related dementia not diagnosed prior to full-blown AIDS might go completely unreported, as it becomes one piece of the Syndrome.
In an article published in 2001, Meehan & Brush cite research by McArthur, Sacktor & Selnes estimating the percentage of advanced HIV disease cases that will develop dementia to be 15 to 20 percent. They contrast HIV-related dementia with Dementia of the Alzheimer’s type. The research determined that the progressive infection of the brain by HIV presents differently and is often misdiagnosed, establishing the need for early screening and general education about this dementia.
Historical Information
The history of HIV related dementia has yet to be recorded as we are just now living it. Research on HIV and AIDS has only occurred in the last twenty years. The controversy over whether the epidemic was started by a zoonosis - a human disease created by animal pathogen crossover or by vaccines produced using cells from infected primates, then spread by medical professionals is still alive (Hooper, 2000). The historical significance of AIDS is not even determined yet.
The stories of the AIDS pandemic are, however being recorded. “And the Band Played On” by Randy Shilts (1987) is probably the best known. It documents the political avoidance, the scientific race for money and fame and the shame and social stigma directed toward the gay community.
Howard Markel (2001) has gathered information on who has written what on the history of AIDS in the United States which includes everything from dramatic presentations to research journalism. He brings to our attention “AIDS Doctors: Voices from the Epidemic” as well as many other works that report and analyze the frustrations, discoveries, fears and devastation of the Syndrome.
Rock Hudson made a decision to record his story, which was published in 1986, bringing huge awareness to what was happening. The loss of Liberace in 1987 made even more people pay attention. Arthur Ashe bravely faced the world before he lost his battle with AIDS in 1993, leaving his autobiography in print. As time goes on, the research now being done on the separate dynamics of the syndrome, such as dementia, will offer some historical insight to those who may need it in the future.
Cross-cultural Considerations
In the early 1980s, AIDS manifested in a very specific population, the Gay Community. AIDS was labeled “the gay disease”, which created bias and denial throughout the rest of the population of the United States. It has been proven that the disease has no prejudice and everyone is vulnerable. However, the myths connected to HIV are still alive and well. When dealing with any aspect of the syndrome, it is necessary to consider the cultural beliefs and fears related to AIDS. This not only relates to ethnic groups but to many sub-cultures such as religious organizations, the drug-culture and the gay and lesbian groups.
AIDS related dementia is a two-sided coin for those living with AIDS. The debilitating loss of cognitive ability is devastating. However, in the family who is in denial that their loved one is stricken by such a socially unacceptable disease, it gives caregivers another area to focus on. Dementia does not have to be related to AIDS and can be discussed separately. Loved ones are able to care for those with dementia as they would someone with Alzheimer’s disease. Dementia is not acquired through body-fluid exchange, which offers some relief to those with strong religious opposition to the sexual or drug use issues of the AIDS. AIDS and HIV related Dementia cannot, however be separated realistically.
At this point, there is an overwhelming lack of research on cultural differences in dealing with AIDS related dementia. This area needs to be addressed as caregivers who are involved with individuals affected by this disorder are also necessarily confronted with aspects of HIV, such as the danger of working with infectious blood and body fluids. The person of Latino descent who has strong Protestant beliefs has to deal with the religious bias against AIDS as well as dementia. A gay woman who considers herself agnostic is more focused on getting help with not losing her cognitive abilities, and possibly with the social prejudice against lesbians. Any complications of AIDS, such as dementia, are impossible to treat independently of the syndrome.
Standard Treatment Approaches
The earlier the diagnosis of any dementia, the more likely it is that treatment will be beneficial. However, early diagnosis is uncommon, especially in HIV related dementia. Often, symptoms of dementia are attributed to depression or side effects of opportunistic infections. HIV is a retrovirus. Because HIV related dementia is caused by infection of the brain (Meehan & Brush,2001), the most obvious treatment is the administration of antiretroviral drugs to slow reproduction of the virus. Through use of these drugs, AIDS has come to appear more like a chronic disease than a terminal one. Consequently, the associated dementia may be of longer time duration. While there is progress in HIV-associated central nervous system infection treatment, there is no sign of a cure for HIV related dementia.
A 1989 UCLA conference on AIDS Dementia Complex hosted three medical professionals to discuss the differences in this type of dementia. They established that the differences often cause this dementia to go undiagnosed or misdiagnosed as depression. The need for further investigation into methods for early diagnosis was determined in order to create better treatment plans (Bredesen, Vinters & Daar).
Medications frequently used are anti-anxiety drugs. These are used more for patient comfort and the benefit of the caregiver than in an effort to stop the deterioration of the brain. However, exercise for brain cells, such as attempting to bring up memories or do simple calculations may help slow down the process.
The most common interventions for dementia focus on assisting the individual with maintaining a quality of life. Midence & Cunliffe (1996) discuss treatments designed to rearrange the environment and help clients manage behaviors. Reality orientation (RO) is used in two ways. One is classroom reality orientation, done with small groups, using words and images to develop better orientation and communication skills. Classroom RO uses environmental labeling, repetition and sensory clues. The second, 24-hour Reality Orientation is implemented throughout the entire day. The individual practices orientation techniques in their daily living activities.
Research cited by Midence & Cunliffe (1996) shows that reminiscence therapy is also popular. This therapy uses resources, such as news articles and photographs, to encourage discussions involving memories or to attempt to elicit memories. Skills learned during reality orientation therapy are reinforced during reminiscence therapy.
Alternative Treatment Approaches
In Everybody’s Guide to Homeopathic Medicines, Cummings and Ullman state “...now AIDS and other immune-deficiency diseases have imprinted upon our minds the importance of having a strong and healthy immune system.”(p.xiii) Building up the immune system is the main focus of alternative treatments for any aspect of AIDS. The idea is to assist the immune system in its fight to not break down as rapidly. Individuals living with AIDS are encouraged to eat right and use herbal immune boosters, such as echinacea and goldenseal.
Some Asian recommendations include honeysuckle and wild indigo, which are both anti-inflammatory herbal anti-biotics. There are Asian remedies for symptoms as well. Anemarrhena-zhi mu and epimedium-yin yang huo are daily soups for reversal of fever and weakness. A nerve tonic can be made from Siberian ginseng and Aconite 30c is a Chinese remedy used to reduce anxiety and fear (Hadady, 1996).
The use of chamomile in a tea is popular for relaxing tension and as an anti-inflammatory. Marijuana is used quite often in an attempt to relieve anxiety or to increase appetite. The only real benefit the alternative treatments offer for HIV-related dementia is to reduce anxiety and possibly help the immune system slow down the progression of the infection of the brain. Herbal remedies and homeopathies need to be used regularly and are not included in the list of items professional nursing staff will administer. Therefore, unless there is a personal caregiver willing to assist with alternative therapies, someone with dementia will not remember to use them.
References
Bredesen, D., Vinters, H. & Daar, E. (1989). The Acquired Immunodeficiency Syndrome (AIDS) Dementia Complex. Annals of Internal Medicine, 111, 400-410. This technical article demonstrates the physiological differences between AIDS dementia complex and other dementias.
American Psychiatric Association (2000). Diagnostic and Statistical Manual of Mental Disorders (4th ed., Rev.). Washington, DC: American Psychiatric Association. The DSM-IV describes the criteria for diagnosing mental disorders.
Cummings, S. & Ullman, D. (1997). Everybody's guide to homeopathic medicines. (3rd ed., Rev.) New York, NY: Penguin Putnam, Inc. This book is a professional guide to the use of homeopathic remedies.
Hadady, L. (1996). Asian health secrets. New York, NY: Crown Publishers Inc. This is a well-researched book on the techniques and supporting beliefs of Asian healing practices.
Hooper, E. (2000). How did AIDS get started? South African Journal of Science, 96(6), 265-269. This technical article covers the early historical facts of HIV/AIDS.
Markel, H. (2001). Journals of the plague years: Documenting the history of the AIDS epidemic in the United States. American Journal of Public Health, 91(7), 1025-1028. This article is the presentation, in discussion form, of the history of the AIDS epidemic in the United States.
Meehan, R, & Brush, J. (2001). An overview of AIDS dementia complex. American Journal of Alzheimer's Disease and Other Dementias, 16(4), 225-229. This technical article contrasts and compares AIDS dementia complex and Dementia of the Alzheimer’s type.
Midence, K., & Cunliffe, L. (1996). The impact of dementia of the sufferer and available treatment interventions: an overview. The Journal of Psychology, 130, 589-602. The technical article covers the impact, symptoms, and interventions related to dementia.
Shilts, R. (1987). And the Band played On: Politics, people, and the AIDS epidemic. New York, NY: St. Martin's Press. This book documents the initial stages of the AIDS epidemic from several perspectives.
Starace, F. & Dijkgraaf, M. (1998). HIV-associated dementia: Clinical, epidemiological and resource utilization issues. AIDS Care, 10(3), 113-122. This technical article examines 6 European studies to demonstrate the needs of dementia patients.
Sue, D., Sue, D.W., & Sue, S. (2000). Understanding Abnormal Behavior (6th ed., Rev.). Boston, MA: Houghton Mifflin Company. This college text on abnormal behavior includes a brief discussion on dementia.