An overview of AIDS dementia complex
Rebecca A. Meehan, PhD
Jennifer A. Brush, MA, CCC/SLP
Abstract
The major neurological complications associated
with HIV infection include cognitive, behavioral, and
motor disturbances, which may range in severity from
subtle, mild cognitive deficits to the clinical syndrome
referred to as HIV-associated dementia or AIDS demen-
tia complex (ADC). As with Alzheimer’s type dementia,
caregivers for people with HIV/AIDS have the over-
whelming and burdensome task of caring for someone
with deteriorating cognitive abilities, increasing physi-
cal debilitation, and changes in personality. This article
describes ADC as well as some of the similarities and
differences from Alzheimer’s type dementia, and offers
some special considerations for older adults and HIV.
Key words: AIDS dementia complex (ADC), dementia
of the Alzheimer’s type (DAT), HIV/AIDS, HIV-associated
dementia
Introduction
Through the advancement of antiretroviral therapies,
people are living longer with HIV/AIDS. As a result of
the leveling in mortality with increases in morbidity,
AIDS is now manifesting itself more as a chronic rather
than an acute condition. The pattern being established
with AIDS, and subsequently with AIDS dementia com-
plex (ADC), mimics chronic conditions and co-morbidity
issues for the elderly in today’s society. The difference is
that the population with ADC is typically younger and
living with what is perceived to be an “old person’s dis-
ease.”1 In addition, HIV/AIDS patients may have multi-
ple psychosocial issues such as premorbid mental
illness, substance abuse, and other HIV-related condi-
tions. As with dementia of the Alzheimer’s type (DAT),
Rebecca A. Meehan, PhD, Senior Research Associate, I.D.E.A.S.,
Inc., Kirtland, Ohio.
Jennifer A. Brush, MA, CCC/SLP, Research Associate, I.D.E.A.S.,
Inc., Kirtland, Ohio.
American Journal of Alzheimer’s Disease and Other Dementias
Volume 16, Number 4, July/August 2001
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caregivers for persons with HIV/AIDS have the over-
whelming and burdensome task of caring for someone
with deteriorating cognitive abilities, increasing physical
debilitation, and changes in personality.2-4 This article
describes AIDS dementia complex, its similarities to and
differences from Alzheimer’s type dementia, and offers
some special considerations for older adults and HIV.
The neurological complications of HIV infection, par-
ticularly the neurocognitive and neurobehavioral effects,
have been referred to as the forgotten face of HIV dis-
ease.5 The major neurological complications associated
with HIV infection include cognitive, behavioral, and
motor disturbances, which may range in severity from
subtle, mild cognitive deficits to the clinical syndrome
referred to as HIV-associated dementia or AIDS demen-
tia complex.6-8 It is caused by direct infection of the brain
by HIV itself.
AIDS dementia complex and related cognitive deficits
can appear as the first or occasionally even the only AIDS-
defining medical condition, but usually occur in the late
stages of HIV infection, and typically within the context
of severe immunosuppression and other AIDS-defining
illnesses.7-9 Low weight, anemia, and constitutional symp-
toms are risk factors for ADC.11 Cognitive deficits are
plaguing more and more persons living with AIDS, and
are often unanticipated by both the person with AIDS and
his or her caregivers. It is estimated that approximately 15
to 20 percent of patients with advanced HIV disease will
develop the clinical symptomatology of ADC, and
approximately 30 percent of HIV-positive individuals will
develop cognitive impairment.11 Unfortunately, despite
progress in the treatment of HIV-associated central ner-
vous system (CNS) infection, there is still no cure for
ADC. The efficacy of pharmacological agents in treating
ADC remains under investigation, particularly the ability
of antiretroviral agents to penetrate the CNS as well as the
therapeutic value of neuroprotective agents.10,12-14 Within
the context of the incidence of AIDS today, the implica-
tions for understanding and treating ADC and related cog-
nitive deficits are profound.
225
 The worldwide statistics for AIDS are staggering.
These numbers illustrate that, while there has been a
recent leveling in mortality, the HIV epidemic is grow-
ing nationally and globally.15,16 The United Nations divi-
sion of AIDS indicates that the total number of people
who are living with HIV/AIDS is approximately 34.3
million.16 It is noteworthy that reports may not be repre-
sentative of all persons estimated to be infected with
HIV, since not all infected persons have been tested. In
1999, 5.4 million people were newly infected with HIV,
and 2.8 million died of AIDS.16
In mid-2000, approximately 900,000 people in the
United States and Canada were living with HIV/
AIDS.16,17 Overall, 43 percent of AIDS cases are found
in Caucasian populations, 37 percent are found in the
African-American population, and 18 percent are
reported in the Hispanic population. While women rep-
resent the smaller proportion of the group (16 percent),
African-American women in the United States under
the age of 21 are the fastest growing segment of the
AIDS population. Minorities are disproportionately
represented in the AIDS epidemic. African-Americans
represent 45 percent of new AIDS cases in the United
States, yet only account for 12 percent of the popula-
tion. Latino and Latina Americans represent 20 percent
of new AIDS cases, but only 13 percent of the popula-
tion.18
HIV/AIDS is also a significant problem for older peo-
ple. The Centers for Disease Control and Prevention
(CDC) has reported that, in the United States, more than
11 percent of cumulative HIV/AIDS cases have been
identified in people 50 years of age and older.19 Mueller
observes that the “graying” of American society in con-
cert with the life-prolonging effects of new forms of
antiretroviral therapy will undoubtedly contribute to an
ever-increasing number of older persons with HIV/AIDS
in the future.20 Szirony discusses that there is frequently
a delayed diagnosis and poorer prognosis for elderly
individuals infected with HIV.21 Older adults are gener-
ally not perceived to be at risk for developing AIDS, and
the health care team often does not recognize the signs
and symptoms of the disease in the elderly population.21
Certainly, insofar as the presence of other dementias,
particularly Alzheimer’s disease, positively correlates
with aging, the experience of ADC for that population
will present its own set of problems. Szirony notes that
ADC is often misdiagnosed as Alzheimer’s disease
when older adults develop symptoms distinctive for
dementia.21 It has been recommended that HIV screen-
ing be included in the differential diagnosis for demen-
tia.22 These devastating incidence levels demonstrate the
need to understand ADC and the special concerns for
caregivers.
226
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AIDS dementia complex
HIV causes subcortical perturbations, resulting in
ADC.23 Clinical features of the disease resemble those of
other subcortical dementias, such as Huntington’s dis-
ease and Parkinson’s disease.24-26 This may be due to
damage to the basal ganglia and caudate nuclei associat-
ed with HIV,27-29 or the result of a nonspecific response
to infection.30 The volume of the basal ganglia has been
found to be significantly reduced in persons with ADC.27
Tremors and reduced motor speed are common manifes-
tations of damage to the basal ganglia. Characteristics of
subcortical dementia include impairments in executive
function, visuospatial function, psychomotor speed, and
recall related to retrieval. Least commonly affected are
functions of the cerebral cortex, such as language.31 This
is different from DAT, which is classified as a cortical
dementia. As the course of DAT progresses, semantic
memory deteriorates as a result of damage to cortical
association areas.
A study by White et al. assessed semantic and episodic
memory of patients presenting with ADC, HIV seroposi-
tive persons without dementia, and HIV seronegative con-
trols.32 All participants were given the Boston Naming
Test,33 the California Verbal Learning Test,34 and verbal
fluency tests. Results of the HIV-associated dementia
group indicated a relative sparing of semantic memory,
as indicated by normal performance on the Boston
Naming Test, but impaired episodic memory and verbal
fluency. The results of this study also suggest that per-
sons with HIV-associated dementia have an impaired
ability to retrieve information rather than a deficit in
retention of information.32 These results are consistent
with other studies of subcortical dementia such as
Huntington’s disease, in which patients demonstrated
impaired retrieval, impaired manipulation of acquired
knowledge, and a slowing of thought processes and psy-
chomotor speed.11,35 In contrast, persons with DAT per-
form poorly on semantic memory tests and are known to
forget information rapidly.36 The ability to name objects
is generally a preserved skill in persons with ADC,
whereas persons with DAT present with significant nam-
ing deficits.
AIDS dementia complex is among the most psycho-
logically feared of all AIDS-related illnesses, affecting
not only HIV-positive individuals, but their social networks,
health care providers, and the public health system.1,37
AIDS dementia complex and associated cognitive de-
ficits can lead to failure to adhere to medication regi-
mens, an overall disruption in self-care abilities, and
reduced coping skills and quality of life.37,38 Features
include impaired attention and concentration, slowed
information processing, compromised problem-solving
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 Table 1. Summary of clinical features of AIDS dementia complex
Early stage
Decreased attention
Forgetfulness
Cognitive
Information processing difficulties
Visuospatial deficits
Unsteady gait
Tremor, impaired handwriting
Motor
Leg weakness
General slowing
Apathy, withdrawal
Behavior Agitation
Personality change
abilities, apathy, and neuromotor dysfunction as well as
changes in affect and social functioning.7,8,39-41 It is
important to note that ADC is not the only cause of cog-
nitive impairment experienced by persons with HIV.
Changes in cognition can be the result of reaction to
medications, delirium, depression, mental illness, anxi-
ety, or substance use. Screenings that are useful for dif-
ferential diagnosis include those which examine
psychomotor speed: Trailmaking, Grooved Pegboard,
and Symbol Digit.11
The symptoms of ADC can be categorized broadly
into early and late stages (see Table 1).
Early stage
Caregivers are often the first to notice signs of cogni-
tive changes with the earliest symptoms consisting of
forgetfulness and lack of concentration. People need
more time to complete tasks of daily living and will often
begin to miss appointments, forget to return phone calls,
or have difficulty managing finances. Characteristics of
motor impairments in the early stage are similar to those
of other subcortical dementias. The first signs of motor
difficulties are usually changes in handwriting and diffi-
culty grooming or shaving. Other motor disturbances
experienced by a person with ADC can include unsteady
gait, tremor, and leg weakness. As ADC involves a triad
of cognitive, motor, and behavioral disturbances, the
person may exhibit agitation, apathy, withdrawal from
social situations, or hallucinations. In contrast, a person
with DAT would not exhibit the motor impairments typi-
cal of ADC. Characteristics of the early stages of DAT
include deficits such as impaired working memory,
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Late stage
Global dysfunction
Confusion, disorientation
Delayed or absent verbal responses
Ataxia
Spasticity
Weakness
Dyskinesia
Disinhibition
Unawareness of illness
Incontinence
word-finding difficulties, disorientation to time, and
impaired comprehension of complex information.
Late Stage
In late stage, differentiation between ADC and DAT
may be impossible. In both diseases, there is a global
deterioration of cognitive and motor skills accompanied
by socially inappropriate behavior, incontinence, and an
unawareness of the illness. Caregivers become fully
responsible for the daily care of the person with ADC.
Individuals experience marked memory impairment,
disorientation, and severe speech and language im-
pairments. Motor disturbances such as ataxia, dyskinesia,
and spasticity result in significantly reduced mobility,
requiring constant use of a wheelchair or more time in
bed. Persons in the late stages of DAT are also globally
impaired, exhibiting little, if any, meaningful communica-
tion and requiring total care for activities of daily living.
Concerns for caregivers
Similar to Alzheimer’s disease, social networks and
caregivers can also be strained. Some of the most prob-
lematic behaviors and situations for people with ADC
include home safety, confusion, memory difficulties,
ambulating, incontinence, psychosis, violence, or agita-
tion. A significant proportion of the population of per-
sons with ADC may also have experienced previous
psychiatric disorders, excessive use of drugs, and exces-
sive use of alcohol,42 and the early symptoms of ADC
can be easily confused with the effects of substance
use.11 Caregivers of patients with ADC must not only
227
cope with the dementia, but also with society’s AIDS pho-
bia, ignorance about the disease, and discrimination, all of
which may make it difficult to be open and thus gain sup-
port from others.2 In certain cases, family involvement can
be very different from DAT, because it may be the first
time that the families have learned about or acknowledged
their loved one’s drug use or sexual practices. The support
network of the patient may be comprised of partners or
friends who may also be HIV-positive, but do not have
ADC, thus creating the potential for the caregivers’ own
fears about dementia and dying resulting in feelings of
hopelessness, despair, and isolation.2,4
To care for someone with any type of dementia is very
challenging and can be overwhelming. Recommen-
dations for caregivers of people with ADC are compara-
ble to those of Alzheimer’s disease. It is crucial to be
aware of the fear, isolation, and social distance often
associated with being a caregiver to someone with any
type of dementia. Joining a support group, taking breaks,
arranging for respite care, and exercising are proven
methods to prevent caregiver burnout.
Conclusion
Among over 75,000 Americans diagnosed with AIDS
every year, 10 percent of those people are aged 50 and
older.43 Because there are approximately 10,000 new cases
of AIDS dementia complex in the US per year, it is impor-
tant for health practitioners and caregivers to be aware of
the symptoms of ADC.11 Unless there is awareness about
the disease, there is greater chance for misdiagnosis, less-
ening the chance for practitioners to recommend the best
strategies to caregivers. To screen clients at high risk for
ADC is essential, as many of the symptoms are subtle and
may be disregarded. Although caregivers may notice some
similarities between DAT and ADC, clinical mani-
festations of ADC indicate subcortical involvement, char-
acterized by memory loss (impaired retrieval), motor
disturbance, and personality change.
Suggested resources
• Zeifert P, Leary M, Boccellari A: AIDS and the
impact of cognitive impairment. UCSF AIDS
Health Project, 1995; tel.: (415) 502-4930, web
site: www.ucsf-ahp.org.
• National AIDS Hotline, tel.: 1-800-342-2437.
• American Foundation for AIDS Research, tel.:
1-800-392-6327.
• I.D.E.A.S., Inc., and Menorah Park Center for
228
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Senior Living: Solving care problems in HIV:
Coping with cognitive issues. Video education
series, tel.: 1-888-41-IDEAS.
• AIDS Education and Training Centers, web site:
www.aidsed.org.
• Centers for Disease Control and Prevention,
web site: www.cdc.gov/hiv.
• Association of Nurses in AIDS Care, web site:
www.anacnet.org.
Note
The authors were supported by a grant from National Institute of
Mental Health, #MH58952, to develop caregiver training materials
for HIV.
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