But this may be easier said than done. Research into HIV related neurological problems may be difficult in parts of the world where mental health services have long been neglected.
For example, a mental health profile of Zambia published in 2004 claimed that the mental health system in that country was in a state of total disarray — which in turn made it next to impossible to assess the true burden of mental illness there (Mayeya).
According to the Zambian report, the situation evolved in that country, because infrequent reporting of mental illness led to the field being ranked low in the nation’s list of health priorities: “Mental health services were subsequently overlooked.... The result was that delivery of the country’s mental health services deteriorated. Potential funding agencies and cooperating partners were not keen to put money into mental health and district health management teams stopped prioritizing mental health.”
While each country is, of course, unique, the Zambian paper demonstrates the sorts of the public health, psychosocial, and economic factors that commonly influence the mental health services and policy in resource poor countries. It describes a host of primarily psychosocial stress factors such as widespread poverty, unemployment, homelessness, the loss of family members (or parents) to AIDS and other diseases, alcohol or drug abuse that affect the mental health of the population. Like many other developing countries, there are also large numbers of extremely traumatised refugees from conflicts in neighbouring countries, victims of ethnic or political violence; and hundreds of thousands of people have also been displaced internally because of natural (droughts or floods) and manmade disasters.
In addition, rape and other violence against Zambian women is epidemic. Women, who are disproportionately at risk of HIV infection, are also “forced by circumstances to continue living in abusive relationships to the detriment of their mental well-being,” wrote Mayeya et al. “Some men and women believe that in order to show not just how superior a man is to his wife, but how much he loves her, he should beat her—at least occasionally.”
Given such pressures, one would expect that a lot of people would have trouble coping and that mental illness would be rife. Yet relatively few Zambians ever seek out mental health services. One reason (and a factor that inevitably leads to the under-reporting of mental illness in the country) is the stigma attached to mental illness. For example, “to a large extent in Zambia, people who are mentally ill are stigmatized, feared, scorned at, humiliated and condemned… There are a variety of cultural beliefs about the cause of mental illness in Zambia. Some believe that it is a form of spirit possession or social punishment. Others, that it is caused by witchcraft and can only be treated through traditional means and not conventional medicine.”
In another report from Zambia from the first NeuroAIDS conference, Dr Gretchen Birbeck and colleagues, who were investigating the incidence of HIV dementia in the general populace, reported that stigma rendered one particular neuroassessment tool, the Neuropsychiatric Inventory (NPI) (which involves interviewing family members about a subject’s mental health) virtually useless (Birbeck). “The cultural unacceptability of the NPI became apparent when family members refused to discuss issues of aggression, agitation, hallucinations or depression in any abstract terms (Robertson).”
According to the Zambia mental health profile, when help is sought, it is usually from traditional healers who “are initially consulted by about 70–80% of people with mental health problems,” rather than medical doctors. Communication between such traditional practitioners and the medical establishment is rare and contributes to the under-reporting of these conditions.
Even when care is sought at the local clinic or hospital, the staff may not be well equipped to diagnose the condition. Finding or adapting culturally and resource- appropriate tools for the assessment of neuropsychiatric health has been a major challenge because most screening tools were designed for Americans or Western European norms (Robertson). Recently, with the development of the simple International HIV Dementia Scale (see below), it may be possible to perform some basic screening even at the primary health care level and then refer patients suspected of having a psychiatric or neurological problem.
However, in many settings there may simply be nowhere to refer patients to. In many countries, there is a severe shortage of staff trained to diagnose or manage neurological complaints at the referral level. Most countries have few if any neurologists. And in Zambia “referral services used to be available (1975–1990) but have collapsed due to lack of coordination,” wrote Mayeya et al.
The physical infrastructure has also been neglected in many countries. “The buildings lack maintenance, most of the lavatories are non-functional…” according to the Zambian report. Moreover, access to working neuroimaging equipment, which is very useful for the differential diagnosis of several neurological conditions, may be extremely limited (perhaps to only a few facilities within a country). For example, neurologists from Mali stressed at the NeuroAIDS conference that they had no access to MRIs in the country (although they could perform CT scans) (Traore).
According to Dr Birbeck, “Even CT technology is largely unavailable to the vast majority of people in sub-Saharan Africa. There are two CT scanners in Zambia and at any point in time neither may be working...even if one were fortunate enough to have geographical access to the scanner. There is no MRI in Zambia or Malawi. I don't think Uganda has one. And one has to remember that even if a scanner exists, geographical and financial barriers prevent the vast majority of people from being able to access the technology.”(Birbeck 2000, Birbeck and Munsat).
As a result of all these issues, the lion’s share of neuropsychiatric problems in many resource-constrained countries probably go unrecognised, under-reported, undiagnosed and untreated.
Therefore, concluded the Zambian report, “a comprehensive picture of the incidence and prevalence of mental and neurological disorders per 10,000 population is not well known.” However, records from one referral hospital there suggest that acute transient psychotic states are more commonly encountered, followed by schizophrenia, substance misuse, epilepsy and dementia.
Given the high HIV prevalence in Zambia (over 20%), one might presume that many of the mental disorders observed would be HIV-associated. However, in another study evaluating risk factors associated with a first episode of psychoses among 160 subjects admitted to Chainama Hills College Hospital, in Lusaka, clinical evidence of HIV/AIDS was found in only 9%. What was far more striking was that most cases were men (male to female sex ratio was 2.5:1), and that alcohol and other drug abuse were common in these psychotic males (56%) (Mbewe). Thus, neurological problems related to other social ills or demographic conditions may be at least as prevalent as those caused by HIV.