Signs and symptoms of HAND experienced by people with HIV that can indicate changes in cognition over time may be a new behaviour (e.g. poorer memory) or may be so subtle that they are missed or people with HIV attribute the changes to something else, such as being tired or busy. If the person has always misplaced keys, this is their usual behaviour. It is more important to take note of new changes in behaviour.
Signs and symptoms of MND and HAND include noting a change in the person’s behaviour and cognition, affecting the person’s ability to perform activities of daily living such as preparing meals, managing finances, remembering doctor’s appointments and driving ability. It may also affect a person’s social relationships and the ability to retain employment or work at a higher level.
The important areas affected are: motor skills, memory, concentration and social engagement. In addition, executive function can also be affected whereby the person may experience changes in their ability to plan, organise and to solve complex or new problems (Table 6).
Table 6: Areas affected by HIV-associated neurocognitive disorder (HAND) and nursing strategies
Area affected |
Signs and symptoms |
Strategies |
Motor skills |
Increasing fatigue Unsteady gait Increased clumsiness Fine motor coordination Slowed motor speed Driving deficits Difficulty typing, texting |
Provide information slowly Give ample opportunity for response May need assistance to complete activities |
Memory |
Forgetting dates (e.g. birthdays), where placed keys, phone Memory affecting cooking and shopping Missing appointments and medications Forgetting to send emails and issues for meetings |
Write down instructions relating to important information and check understanding Encourage use of memory aids (e.g. diaries, calendars, Post-It notes) Repeat and write down new information Provide reminders of appointments Encourage a routine Pay more deliberate attention to what the person is trying to remember |
Concentration |
How the person becomes receptive to stimuli and how he or she begins to process information Problems include: Difficulty taking simple information and following directions Difficulty keeping track of conversations May have to re-read things Difficulty completing activities Difficulty following plots of movies and books Becoming mentally fatigued easily |
Present information in small amounts at a time Present information in a manner that is clear, simple and concrete Limit distractions (e.g. TV) Provide prompts and reorient to task if distracted Determine the time of day at which the person is most alert and encourage completion of difficult tasks at that point |
Behavioural (social) changes |
The person can experience one of two areas of behaviour change: 1: Apathy and listlessness Withdrawal Lack of motivation Impulsivity and disinhibition 2: Hypomania Change in personality Increased agitation, aggression, and irritability (e.g. stealing, swearing, overfamiliarity) Emotional lability |
Identify the person’s change of mood, ask if he or she is aware of changes; are there any reasons for becoming withdrawn Arrange a psychiatric assessment to exclude depression If not depression assist the person to have small achievable goals Check in with the person frequently to encourage engagement with the service Identify changes in mood Ask the person what he or she has noticed, whether there are any specific reasons for increased irritability for example Arrange a psychiatric review ( possible prescription of medications) Develop strategies to reduce elevated mood or irritability Refer to other services to support changes in mood outcomes to life |
Executive function |
The person may experience difficulty in: Initiation of a task Planning Problem-solving Cognitive flexibility Decision-making Concept formation and abstraction Judgment Feedback utilisation and monitoring behaviour |
Encourage client to work through problems with a trusted person and to write down alternative solutions for later referral Try to break complex tasks down into smaller components Provide a structure or plan where possible Guide the client through complex decisions step-by-step |
It is important to ask the people with HIV (and a caregiver, if they have one) questions relating to changes either may have noticed. A vital question to start the conversation can simply be: “Have you noticed any changes?”