Diagnosing HIV Dementia: A Retrospective Analysis
Daniel M. Rosenberg, MPH, Bryce McLaulin, MD, Marsha Bennett, MN, RN,
and Kim Mathisen, BA
The purpose of this study was to determine the
criteria by which the diagnosis of HIV dementia
was made by providers in a public HIV
outpatient clinic and hospital, and to evaluate the
extent to which the providers' diagnosis
confirmed or denied the presence of HIV
dementia according to CDC recommendations.
Retrospective chart analysis was conducted
detailing symptomology, laboratory findings, and
social characteristics of 103 HIV-infected patients
from Nov 1, 1990 to Dec 31, 1993. Seventy-eight
patients were evaluated by providers and given a
preliminary HIV dementia diagnosis; 25 patients
received no preliminary diagnosis. On follow-up,
39 were confirmed diagnosis while 64 patients
received no follow-up (confirmatory) diagnosis.
Inability to pay attention or remember details,
memory deficit, motor weakness, and mild
disorientation were all found to be significantly
associated with being evaluated by a provider.
Substance use was prevalent. Inconsistent
manner in which HIV-demented patients were
identified highlights the need for a standardized
evaluation of signs and symptoms known to be
associated with HIV dementia.
Key words: AIDS, CNS, dementia,
encephalopathy, HIV, immunosuppression
JANAC Vol. 7, No. 6, November-December, 1996
Daniel M. Rosenberg, MPH, is Epidemiologist, HIV
Outpatient Clinic, Bryce McLaulin, MD, is Professor,
Psychiatry and Psychological Services, Department of
Psychiatry, Marsha Bennett, MN, RN, is Coordinator
of Clinical Research, and Kim Mathisen, BA, is a
Research Assistant, Louisiana State University Medical
Center, Department of Medicine-HIV Section, New
Orleans, LA.
C n t r a l and peripheral nervous system complications
are common in HIV-infected patients; indeed, 30 to 60
percent of HIV-infected patients will experience such a
complication (Bedos et al., 1995; McArthur, Selnes, Glass,
Hoover, & BaceUar, 1994). Bacellar et al. (1994) reported
that in the Multi-Center AIDS Cohort (MAC) Study, inci-
dence rates of opportunistic neurological disorders con-
tinually increased during the study period of 1988-1992.
An estimated 7% of all patients with AIDS will have
dementia (Bacellar et al.); however, reports as to the
prevalence of HIV dementia has been reported to be as
high as 25%-30% in some populations (Brew, 1994; Glass,
Wesselingh, Selnes, & McArthur, 1993; Simpson &
Tagliati, 1994). The frequency of toxoplasmosis, crypto-
coccal meningitis, progressive multifocal leukoen-
cephalopathy, and primary central nervous system
(CNS) l y m p h o m a were reported to be increased as
patients live longer with progressive immunosuppres-
sion (Bacellar et al.). Bacellar and colleagues indicated
that in the MAC study, the incidence rate for HIV
d e m e n t i a did not increase a m o n g the MAC s t u d y
patients from 1988 to 1992. However, patients with
chronic progressive immunosuppression were three
times more likely to develop HW dementia than other
o p p o r t u n i s t i c CNS complications (Bacellar et al.;
Simpson & Tagliati).
H1V is known to infect the brain shortly after the ini-
tial infection (Epstein & Gendelman, 1993). The effects
of HIV on the cellular components of the brain have
been described (Brew, 1993; Portegies, 1994). Complex
interactions of cytokines and neurotoxins play key roles
57
Diagnosing HIV Dementia: A Retrospective Analysis
in neuronal d y s f u n c t i o n and death (Brew; Flier &
Underhill, 1995; Lipton, 1994; Portegies; Wiestler, St.
Leob, Brustle, Spiegel, & Skleihues, 1992). The cogni-
tive, behavioral and motoric manifestations of the neu-
ronal d y s f u n c t i o n h a v e b e e n n a m e d the " H I V 1
Associated Cognitive Motor Complex" (American
A c a d e m y of N e u r o l o g y AIDS Task Force, 1991),
although the terms of HIV dementia, HIV-associated
dementia, and AIDS dementia are more frequently
used in clinical settings and in scientific literature. A
clinical staging schema (Price & Brew, 1988) has been
developed and is widely used to rate the level of cogni-
tive and motor impairment of HIV dementia. Despite
advancing knowledge of the pathogenesis and clinical
manifestations of HIV dementia, the diagnosis is based
exclusively on clinical findings (Syndulko et al., 1994).
The differential diagnosis of HIV dementia is compli-
cated by the necessity to rule out other CNS complica-
tions of progressive immunosuppression.
Comorbid psychiatric disorders (Grant & Atkinson,
1990; Jacob, Eapen, John, & John, 1991; Ostrow et al.,
1989; Seth, Granville-Grossman, Goldmeier, & Lynch,
1991; Snyder et al., 1992) and substance abuse (Kim,
Marmor, Dubin, & Wolfe, 1993; Klimas et al., 1993;
Palenicek et al., 1993; Solomon et al., 1993) may further
complicate the differential diagnosis of HIV dementia.
S y m p t o m s of HIV dementia m a y be confused with
depressive symptoms such as poor attention and con-
centration, apathy, and memory problems. The cognitive
effects of intoxication and the long- term sequelae of sub-
stance abuse such as impaired mentation, ataxia, and
memory deficits also may be confused with symptoms
of HIV dementia. These conditions and others, such as
opportunistic neurologic disorders, complicate the
assessment, diagnosis, and development of a treatment
plan.
The CDC criteria for the diagnosis of HIV dementia
are "clinical findings of disabling cognitive or motor dys-
function interfering with occupation or activities of daily
living, progressing over weeks to months, in the absence
of a concurrent illness or condition other than HIV infec-
tion that could explain the findings. Methods to rule out
58
such concurrent illness and conditions must include
cerebrospinal fluid examination and either brain imaging
(computed t o m o g r a p h y or magnetic resonance) or
autopsy" (CDC, 1993, p. 15). CDC recommendations dis-
cuss ruling out differential diagnoses such as toxoplas-
mosis, progressive multifocal leukoencephalopathy or
other CNS lesion, cryptococcal extra pulmonar~ neu-
rosyphilis, major depression, and others because the
diagnosis of HIV dementia is a diagnosis of exclusion
(CDC).
The purpose of this study was to determine by a ret-
rospective medical chart review the criteria by which the
diagnosis of HIV dementia was made by providers in a
public HIV outpatient clinic and hospital and to evaluate
the extent to which the provider's diagnosis confirmed
or denied the presence of HIV dementia according to
CDC recommendations.
Methods
The CDC computerized Adult Spectrum of Disease
(ASD) surveillance and clinical information data base
identified 103 patients attending a New Orleans public
hospital HIV-outpatient program (HOP), as having had
a diagnosis of HIV dementia between Nov 1, 1990 and
Dec 31, 1993. The ASD study follows more than 3,800
HIV-positive patients, with chart abstractions every six
months detailing clinical and social elements of their
HIV experience. All patients who receive care at the
HOP clinic are induded in the ASD. CDC criteria for the
diagnosis of HIV d e m e n t i a were utilized b y ASD
researchers and the abstractors for this chart review
(CDC, 1993). This study was an exempted review by the
institutional review board of an academic institution and
medical center.
Sample
Of the 103 patients, 54% were African-American and
93% were male. At the end of the defined study time
period, 44% were deceased (Table 1). The mean age was
38.5 years old (range = 2 3 - 6 3 years, SD = 7.9). All
JANAC VoL7, No. 6, November-Decembe~1996
Table 1. S a m p l e Demographics (N = 103) Data Analysis

%n Three categories of HIV dementia diagnosis were gen-

9 Diagnosis erated for analysis that would sufficiently characterize
the patient's diagnostic status: "preliminary," having had
Preliminary and confirmed 38 39
one encounter with a provider at which time a tentative
Confirmed 38 39 ("rule out," "questionable," or "possible") diagnosis was
No HW dementia diagnosis 18 19 proposed and certain diagnostic tests ordered; "confir-
9 Race* matory," in which a f o l l o w - u p encounter with the
patient confirmed the HIV dementia diagnosis based on
White 45 46
the results of previously ordered diagnostic tests [as rec-
African-American 54 56 ommended by the CDC, i.e., provider's order of a cere-
9 SEX* brospinal fluid examination and brain imaging (CDC,
1993)]; and "no assessment", where chart analysis
Male 93 96
revealed that no HIV dementia diagnosis was noted.
Female 6 6
"No assessment" reflected patients with symptoms of
9 Status at end of study period dementia written in the chart b u t no evidence of a
provider's diagnosis. The abstracted data were analyzed
Alive 56 58
according to each of these three diagnostic categories.
Deceased 44 45
Frequencies and bivariate statistics were generated
*These categories have some missing data utilizing Bio-Medical Data Processing (BMDP) software.
Chi-square analysis and Fisher's exact tests were per-
formed to distinguish significant differences among the
patients according to symptoms, provider's specialty,
and diagnostic category. Among the bivariate compar-
patients with a diagnosis of HIV dementia in the ASD isons, a ~ value less than 0.05 indicates a significant dif-
database from Nov 1, 1990 to Dec 31, 1993 were included ference, a l~ value less than 0.1 suggests a trend toward a
in this chart review and analysis. significant difference.

Data Collection Results

Medical charts were r e v i e w e d and information
abstracted for each of the 103 patients. The data collec-
tion tool used to abstract charts consisted of a symptom
list and empirical diagnostic tests compiled from a
review of the literature in conjunction with CDC recom-
mendations for HIV dementia diagnosis and treatment
(Table 2). The area of medical specialty for each diagnos-
ing provider (physicians and nurse practitioners) was
noted for analysis to compare the method of diagnosis
between medical specialty areas; e.g., psychiatry versus
primary care.
Of the 103 patients, 19 (18.4%) patients had no prelim-
inary or confirmatory diagnosis (not assessed) yet were
listed in ASD as HIV dementia patients. These patients
were listed as "demented" or having "demented behav-
iors" and thus treated as having dementia but were not
diagnosed with HIV dementia by any provider. Of the
103 patients, 39 (37.8%) patients were evaluated and
given a sole preliminary ("rule out", "questionable" or
"possible") HIV dementia diagnosis by any provider.
Thirty-nine preliminary diagnosed patients (37.8%) were
followed up and given a confirmatory diagnosis (i.e.,

JANAC Vol. 7, No. 6, November-December, 1996 59

Diagnosing HIV Dementia: A Retrospective Analysis

T a b l e 2. D a t a C o l l e c t i o n Tool

Early Symptom Checklist

_ _ Inability to p a y attention, c o n c e n t r a t e , r e m e m b e r details _ _ S l o w n e s s / s l u r r i n g of s p e e c h

_ _ N o l o n g e r as talkative, " s p o n t a n e o u s , " or as " s h a r p " _ _ T e n d e n c y t o w a r d s social w i t h d r a w a l
_ _ Difficulty o r g a n i z i n g or c a r r y i n g o u t c o m p l e x tasks _ _ A l t e r e d / u n s t e a d y gait
_ _ M e m o r y deficit (loss), forgetfulness, recent m e m o r y loss Clumsiness
w i t h long- t e r m intact Motor weakness
_ _ Fall w i t h r a p i d h e a d t u r n / l o s s of b a l a n c e __ Agitation
_ _ L a c k of fine m o t o r c o n t r o l / d e t e r i o r a ~ o n in h a n d w r i t i n g __ Mild disorientation/confusion
_ _ A p a t h y , irritability, d e p ~ s s e d m o o d , fiat affect _ _ E x a c e r b a t i o n of p r e v i o u s p e r s o n a l i t y traits
_ _ D e c r e a s e in c o g n i t i v e intellectual f u n c t i o n (i.e. inability _ _ I m p a i r e d ocular m o v e m e n t
to a b s o r b o r d e a l w i t h n e w i n f o r m a t i o n / m e n t a l s l o w i n g
_ _ Similarities test g i v e n ( p o o r p e r f o r m a n c e )
_ _ Inability to m a k e c h a n g e for a d o l l a r

M i d to Late S y m p t o m C h e c k l i s t
_ _ U n a b l e to follow c o n v e r s a t i o n _ _ P s y c h o t i c features
_ _ O b v i o u s m e m o r y p r o b l e m s (can result in u n s a f e situation) __ Complete disorientation
_ Inability to p e r f o r m g r o o m i n g / a c t i v i t i e s of d a i l y living
_ __ Aphasia
_ _ F r e q u e n t tremors, hyperreflexia, clonus, p a r a p a r e s i s , __ Global cognitivedysfunction
q u a d r i p a r e s i s , paresthesia, p e r i p h e r a l n e u r o p a t h y __ Amnesiac fea~res
_ _ P r e s e n c e of frontal release s i g n s ( s n o u t of glabellar) __ Lethargy/hypersomnolence/vegetative
_ _ Severe gait p r o b l e m s , ataxia _ _ Seizures

Substance Use
__ Alcohol _ _ Injection d r u g u s e
__ Marijuana _ _ N o record of s u b s t a n c e u s e
__ Crack/cocaine Not assessed
__ Heroin
__ Other

Fundoscopic Exam Magentic Resonance Imaging Computerized Axial Tomography

__ Papilledema present _ _ Difh~se cortical a t r o p h y _ _ Diffuse cortical a t r o p h y
__ Hemorrhages present Normal Normal
__ Normal Not done __ Not done
Not done

Lumbar Puncture Electroencephalographic exam

__ A b n o r m a l glucose __ Normal
__ Abnormal protein __ Abnormal
__ Positive syphilis __ Not done
__ Positive f u n g a l
I n c r e a s e d w h i t e b l o o d cells
__ Normal
Not done
:, ,~,

60 JANAC Vol. 7, No. 6, November-December, 1996

received the CSF examination and brain imaging to rule Table 3. F r e q u e n c y of D i a g n o s t i c and Laboratory Tests
out concurrent illness) by a n y provider. Six patients Ordered (N = 103)
(5.8%) were given a confirmed HIV dementia diagnosis
% n
by any provider at their initial visit; i.e., no diagnostic
tests results were considered in making the diagnosis. 9 M a g n e t i c resonance imaging
Of all study patients (N = 103), 23 (22.3%) patients had Abnormal 11 11
a differential diagnosis of: toxoplasmosis (n = 6), progres-
Normal 4 4
sive multifocal leukoencephalopathy or other CNS lesion
Not done 85 88
(n = 6), cryptococcal-extra p u l m o n a r y (n -- 1), neu-
rosyphilis (n = 1), major depression (n = 4) and other (n = 9 C o m p u t e r i z e d axial t o m o g r a p h y
5) in addition to HIV dementia according to CDC recom-
Abnormal 30 31
mendations.
Normal 18 19
Several diagnostic exams were performed. Fifteen
Not done 51 53
patients were evaluated with magnetic resonance imag-
ing, 11 were abnormal (diffuse cortical atrophy) and 4 9 Lumbar puncture
were normal. Of those patients (n = 50) evaluated with Abnormal protein 14 14
computerized axial tomography, 31 were abnormal (dif-
Positive syphilis 3 3
fuse cortical atrophy) and 19 were normal. L u m b a r
Increased white blood
puncture was performed on 36 of the patients, with the cell count 7 7
following results: 14 had abnormal protein levels, three Not done 65 67
were positive for syphilis and seven had an increased
white blood cell count. Fifteen patients underwent elec- 9 Electroencephalogram
troencephalographic examination, 9 were abnormal Abnormal 5 5
(Table 3). Normal 6 6
Early and mid-to-late symptoms were collected for Not done 87 90
all 103 study patients. Of the most commonly reported
early symptoms, 14% reported an inability to pay atten-
tion, concentrate or remember details; 18% reported
slowness or slurring of speech; 54% experienced mem- preliminary diagnosis (n = 78), the second section exam-
ory deficit (loss), forgetfulness, recent memory loss with ines any patient at their confirmatory diagnosis (n = 39).
long-term memory intact; 32% walked with altered gait; At preliminary diagnosis, the data suggest that patients
34% had motor weakness; 24% were apathetic or had seen by a psychiatrist versus patients seen by a primary
irritability, depressed mood, flat affect; 33% had mild dis- care provider are more likely to have an inability to pay
orientation, confusion; and 15% experienced a decrease attention, concentrate, or remember details (p<0.08). At
in cognitive intellectual function, mental slowing (Table confirmatory diagnosis, an HOP provider is more likely
4). Of the most commonly reported mid-to-late symp- than a non-HOP provider to have a patient with altered
toms (Table 5), 20% had frequent tremors (or hyper- or u n s t e a d y gait (p<0.01), a n d psychiatrists are more
reflexia, clonus, paraparesis, quadri paresis, paresthesia, likely than primary care providers to see a patient with a
peripheral neuropathy); and 12% had severe gait prob- m e m o r y deficit (p<0.06). Minor differences concerning
lems/ataxia. the race of the patients and their provider were found.
Table 6 describes the bivariate comparisons in two The data indicates that an HOP provider is more likely
sections. The first section examines any patient at their to have diagnosed a Caucasian patient and a non-HOP

JANAC Vol. 7, No. 6, November-December, 1996 61

Diagnosing HIV Dementia: A Retrospective Analysis

Table 4. Frequency of Early S y m p t o m s (N = 103) Table 5. Frequency of M i d to Late S y m p t o m s (N = 103)

% n % n
9 Cognitive 9 Cognitive
Memory deficit (loss), forgetfulness, 54 56 Obvious memory problems (can 8 8
recent memory loss with long- result in unsafe environment)
term intact Psychotic features 8 8
Mild disorientation, confusion 33 34 Aphasia 8 8
Decrease in cognitive intellectual 15 15 Severe disorientation 6 6
function, mental slowing Unable to follow conversation 4 4
Global cognitive dysfunction 3 3
Inability to pay attention, 14 14
Amnesiac features 2 2
concentrate, remember details
Inability to make change for a dollar 2 2 9 Behavioral

Poor performance on similarities test 1 1 Inability to perform basic grooming 7 7

and ADLs 7 7
9 Behavioral
Lethargy, hyper somnolence and 2 2
Apath~ irritability, depressed 24 25 vegetative
mood, flat affect
9 Motor
No longer as talkative, spontaneous 7 7
or as sharp Frequent tremors, hyperreflexia, 20 20
clonus, paraparesis, quadri paresis,
Exacerbation of previous 6 6 paresthesia, peripheral neuropathy
personality traits Severe gait problems, ataxia 12 12
Tendency toward social withdrawal 5 5 Incontinence 8 8
Agitation 4 4 Presence of frontal release signs 7 7
(snout and/or glabellar reflexes)
Difficulty organizing or carrying 3 3
Seizures 5 5
out complex tasks
9 Motor

Motor weakness 34 35
p r o v i d e r is m o r e l i k e l y to d i a g n o s e d a n A f r i c a n -
Altered gait, unsteady gait 32 33 American patient (p<0.04) (Table 6).
Slowness/slurring of speech 18 18 Substance use interferes with the diagnosis of H I V
Fall with rapid head turn, loss of 10 10 d e m e n t i a b y potentially m a s k i n g or m i m i c k i n g s y m p -
balance toms indicative of HIV dementia. Forty-eight percent (N
= 49) of all s t u d y patients reported past substance use:
Lack of fine motor control, 7 7 31% alcohol; 16% marijuana; 23% crack; 7% heroin; 6%
deterioration in handwriting
other use. T w e n t y - t w o percent reported past or present
Clumsiness 5 5 injection d r u g use, a n d 9% percent did not h a v e sub-
Impaired ooflar movement 1 1 stance use history assessed. Thus, 37% reported no his-
tory of substance abuse (Table 7).

62 JANAC Vol. 7, No. 6, November-December, 1996

T a b l e 6. B i v a r i a t e Statistics Between Provider Specialty by Symptom and by Race

I. P r e l i m i n a r y Diagnosis II. C o n f i r m a t o r y Diagnosis

Symptoms Psych 1 Primary p-value 3 Psych Primary p- v a l u e Hop 4 non-hop 5 p-value

care 2 care
(n = 15) (n = 63) (n = 26) (n = 13) (n = 23) (n = 16)

inability to p a y attention 60% 8% 0.08 15% 19% 0.57 17% 18% 0.62
Altered gait 47% 32% 0.28 38% 34% 0.81 56% 6% 0.01
M e m o r y deficit 80% 60% 0.15 84% 54% 0.06 61% 69% 0.43
Motor weakness 27% 41% 0.23 54% 42% 0.37 48% 44% 0.81
Mild d i s o r i e n t a t i o n 33% 40% 0.65 31% 34% 0.55 30% 37% 0.64
Caucasian race 6 53% 51% 0.91 46% 61% 0.29 65% 31% 0.03
i~iii~iiii~ii~iiiii~ii!ii~ iii84~i!!ii!? ~!~i';!!il~~!!i84
ii~ii~~~~ilil84 !~i!!~Ji~ii!iii!,~~:i !~ii~iii i~i ii~i:iiiiiiii~~%~i,iiiiili:~??~!!84~ii~ !~i~!:~:!
!!i : ~!~!i:i ~!ii7 ~ ~iii ?iii~iii~(iliiiii~!~ill :i:i:! ~i~iiii!i~i~!~~ii!!i!~84
ii~iiii:!iii,~i~! ~!~!?!!i!~!~!i)i!?!~!i~ii~!~!iiiii%ii!!i!i!iiii!i~
i~i i!ii!;~iiii~ iiii ii!iilli ~il~i!i~i~i~iii~iiiill
iii~ii~iiiiii!!iii!iii~iiii~i~i~ I84184184184184184184
1 Patients d i a g n o s e d by a psychiatric p r o v i d e r
2 Patients d i a g n o s e d by a n y p r i m a r y care p r o v i d e r (including both H O P a n d n o n - H O P )
3 All p - v a l u e s g e n e r a t e d by Pearson's chi- square or Fisher exact tests at (~ = 0.05
4 Patients d i a g n o s e d by any p r o v i d e r w h o w o r k s specifically in the division of H W at the H O P clinic
5 Patients d i a g n o s e d by any p r o v i d e r w h o does not w o r k specifically in the division of H W
6 Caucasian patients versus A f r i c a n - A m e r i c a n patients d i a g n o s e d by providers

Note. N o significant differences b y s y m p t o m a n d by race were f o u n d b e t w e e n H O P and n o n - H O P p r o v i d e r s at preliminary diagno-

sis a n d thus not included in this table

T a b l e 7. S u b s t a n c e Use in Study Sample ( N = 94) Two patients underwent azidothymidine (AZT)

t r e a t m e n t (1,000 m g o r g r e a t e r ) f o r t h e i r H I V d e m e n -
% n tia. F o u r p a t i e n t s w e r e p r e s c r i b e d m e t h y l p h e n i d a t e ,
18 p a t i e n t s were prescribed haloperidol, and 79
9 Alcohol 31 32
patients were prescribed no medication specific to
9 Marijuana 16 16 HIV dementia.
9 Crack 23 24
9 Heroin 7 7 Discussion

9 O t h e r use 6 6
The results indicate that a consistent pattern of diag-
9 Injection d r u g use 22 23 n o s i n g H 1 V d e m e n t i a is n o t f o l l o w e d in t h e c l i n i c a l set-
9 N o history of substance use 37 38 tings included in this study. While no single set of
i~iiiiiliiiiiiiiiiliili!!iili~ii!!~iiii!!
iii!iii~iiiilii~i!iii~iiiil
iiii~iil
!iiiiiiiiiiiiil
iiiiiiiili
~i;!i~ii:
i%i~ii!!!i
i!!iii!!iiiiii!iil
!!:iiJ!!if!iii~iiliii~i!ii~ili
~ :ii]~i~iliiiiiiiiill
iiiiiiili!~ili~ii
84
!ii~iiiiii
iiiiiiliiiiiiii~i
iiiii~iiiiiiiiii~i
!i!!~ii~ symptoms or laboratory evaluations can definitively
*Some patients reported using m o r e than one substance.
diagnose HIV dementia, the pattern of symptoms seen
+This table has s o m e missing data d u e to partially c o m p l e t e d
m e d i c a l records for 9 patients. i n p a t i e n t s w i t h t h e s y n d r o m e is h i g h l y c h a r a c t e r i s t i c

JANAC Vol. 7, N o . 6, N o v e m b e r - D e c e m b e r , 1996 63

Diagnosing HIV Dementia: A Retrospective Analysis
and can provide consistency in diagnostic methods. In
addition, radiologic examinations, CSF examinations,
and culture are best for ruling out malignancies or
infections that may produce symptoms of CNS pathol-
o g y (Portegies, 1994). O n l y t h i r t y - n i n e p a t i e n t s
received a confirmatory diagnosis that included the
CDC recommended diagnostics tests; CSF examination
and brain imaging (15% MRI, 48% CAT scan, 35% lum-
bar puncture). This fact is of concern given the preva-
lence of concurrent illness and potential confounding
diagnostic factors.
Certain symptoms do arise as predictive of an HIV
dementia diagnosis, given the high frequency in the
study cohort. Inability to pay attention, concentrate,
r e m e m b e r details; m e m o r y deficit (forgetfulness),
recent m e m o r y loss with l o n g - t e r m intact; motor
weakness; and mild disorientation are all significantly
a s s o c i a t e d with being a s s e s s e d b y a n y provider.
Altered or u n s t e a d y gait is associated with being
given a confirmed HIV dementia diagnosis in this
cohort.
The findings that African-American patients were
more likely to be seen by a non HOP provider and less
likely to be evaluated for HIV dementia are consistent
with p r e v i o u s studies in our patient p o p u l a t i o n s
(Kissinger et al., 1995). In the s t u d y c o m m u n i t y ,
African-American patients enter the healthcare system
with more advanced HIV-related illness than white
patients and thus are more likely to be admitted to the
hospital as an inpatient (i.e., not access the outpatient
HIV specific services). In a d d i t i o n , the African-
American population is less likely to return for outpa-
tient follow-up and, thus, less likely to be seen in the
HOP clinic and evaluated for H W dementia (Kissinger
et al., 1995).
As other studies have revealed, substance abuse
was a comorbid problem in almost half the patients
w h o s e medical records were reviewed. Substance
abuse is a potential confounding factor in determin-
ing neurological diagnoses (Portegies, 1994). This
study did not evaluate for comorbid psychiatric dis-
orders and tracking of referrals for psychiatric and
64
neuropsychological evaluations was not done.
However, the high prevalence of substance abuse in
this cohort is noted and should be addressed in fur-
ther CNS research.
The criteria by which this cohort of HIV-demented
patients was identified highlights the necessity for a
standardized and routine evaluation of signs and
symptoms known to be associated with HIV demen-
tia. Specific motor skills such as gait, balance, and fine
motor control as well as cognitive skills such as orien-
tation, memory, and motivation should be evaluated
on a regular basis. Of the 103 patients identified
through the ASD surveillance system, 19 individuals
had no evidence in their medical records of having
been given a diagnosis of HIV dementia, yet these
individuals had one or more predictive symptoms of
HIV dementia listed in their charts. The existence of
symptoms and the term "demented" appearing in the
chart most likely generated an HIV dementia diagno-
sis for the study patient. Of those who had a prelimi-
nary diagnosis of HIV dementia, only 39 were fol-
lowed up and given a confirmatory diagnosis per
CDC recommendations.
Since there exist potential therapies to alleviate the
symptoms of HIV dementia, and since use of antiretrovi-
rals slows the progression of HIV dementia, it would be
prudent to screen for early symptoms in order to initiate
early care for the demented patient. Screening before the
presentation of frank symptoms will allow early diagno-
sis, intervention, and identification for enrollment into
clinical trials for experimental treatments of HIV demen-
tia where available, in the case of failure of current
options. Recent evidence indicates certain medications
such as memantine may prevent H1V dementia, making
sensitivity to symptoms of dementia essential (Flier &
Underhill, 1995; Lipton, 1994).
Early d e t e c t i o n e n a b l e s the patients a n d their
providers to examine support systems and resources.
Nurses can aid families in planning for changes in the
patient, gaining a greater understanding of the HIV
dementia process to allay myths and fears, and in
helping patients and providers capitalize on existing
JANAC Vol. 7, No. 6, November-December, 1996
strengths and compensate for cognitive-motoric
deficits. The routine evaluation of the HIV-infected
patient should include screening for HIV dementia
related symptoms (Table 2) and further work-up by
diagnostic techniques (cerebral spinal fluid examina-
tion, brain imaging techniques, psychological cogni-
tive testing). Requisites for an H1V dementia screening
tool include that it be brief yet comprehensive and
easy to use by all nurses in a clinic. Subsequent to the
screening of the patient, the nurse can make the
appropriate referrals for further work-up of the
patient.
Conclusion
This results of this study indicate that the criteria by
which the diagnosis of HIV dementia was made by
providers are not standardized. A routine HIV dementia
screening tool should have a high sensitivity to identify
patients who can be thoroughly evaluated according to
the CDC recommended protocol. Currently, further
research has necessitated the validation of a threshold
level for a newly developed HIV dementia screen. The
appropriate diagnosis of HW dementia allows for spe-
cific interventions as well as identifying a population for
further research. Nursing research might entail the exam-
ination of patients with impaired memory and cognitive
functioning, coupled with often limited support at home,
and their ability to stay on a medication regimen and
keep clinic appointments. More research needs to be
done in the area of individual and family coping with
HIV dementia; comparing the effectiveness of nursing
interventions such as a group therapeutic versus an indi-
vidual approach to enable patients to maintain an inde-
pendent home life or an assisted living environment for
as long as possible.
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