Are we thinking clearly about brain impairment?

For the last three years the UK’s HIV doctors’ and patients’ organisations - the British HIV Association (BHIVA) and the UK Community Advisory Board (UKCAB) - have collaborated on bringing an issue of particular interest to patients to the autumn BHIVA Conference. This year, prompted by studies presented earlier in the year (see HTU 186), the subject was HIV-associated brain impairment and dementia.

Dr Simon Rackstraw, Medical Director of the Mildmay Hospital, spoke about the basic features of a condition which is often called ‘HAND’, for HIV-associated neurological disorder.

The incidence of severe AIDS dementia, a feature of very late-stage AIDS, fell from 3% a year in 1992 to 0.1% in 1998, and it was hoped would become virtually a thing of the past. So it was a shock to many when in 2009 the large US CHARTER study found that a majority – 53% – of patients had some evidence of neurological impairment.¹   

If HAND is so common, why haven’t more of us noticed it? Possibly because the symptoms are so easy to blame on stress, lack of sleep or a hangover. They include:

• Difficulty concentrating and slowed thinking
• Difficulty remembering phone numbers/appointments, with reliance on reminders
• Irritability and depression
• Unsteady gait and poor co-ordination.

Rackstraw asked audience members if any of them had not experienced these symptoms at some point.

HAND and HIV dementia often improved with appropriate treatment, he said. Just putting untreated patients on antiretrovirals (ARVs) substantially reduces HAND. Antidepressants have also produced considerable improvements in patients with more severe neurological symptoms.

Mike Kopelman, Professor of Neuropsychiatry, added more details.

The exact definition of HAND is that patients are in the lowest 15.8% of the population, and of dementia in the lowest 2.2% of the population, when it comes to performance in at least two neuropsychological ‘domains’.

Domains are different areas of ability such as intelligence, memory, speed, focus, emotional stability and motor co-ordination.

Studies in both the pre- and post-ARV era, from 1992 and 2004, found that patients with HIV tended to have defects in recalling information, in fine muscle movements and co-ordination and with focusing and concentration. Other abilities such as abstract thought, abstract ideas and memory of recent events tend to be less affected.

One interesting finding from a number of studies is that, in the short-term at least, HAND does not appear to progress. In one set of 32 patients observed for 27 months, mental performance got no worse during that time.²

It is not known, however, whether dementia awaits people further down the line. This concern was the motif of the third talk by Robert James of UKCAB.

Will we ever get to be old and wise? he asked. To find out, he canvassed people with HIV (some with diagnosed cognitive impairment and some without), support group leaders and professionals in the HIV and dementia fields.

Diagnosis was a common theme, with several people with impairment giving accounts of misdiagnosis. Simon Rackstraw commented that patients can be regarded by healthcare workers as ‘difficult’ or ‘unco-operative’ for years before it is finally found they have brain impairment. Problems with adherence may be a telltale sign.

If people with HIV were found to be more likely than the general public to develop dementia as they age, and earlier too, then social and healthcare provision for people with classic age-related dementias might not suit people with HIV, who will often be younger and more physically active. 

Many patients and organisations were unaware of the issue of brain impairment, with patient groups saying that they had not seen it and that, unlike other mental health problems, it was not an issue. There was suspicion of assuming problems were neurological rather than psychological.

A post-seminar discussion came out with a couple of specific recommendations.

In order to develop any sense of the frequency and course of brain impairment, all patients should be given a simple screening test at diagnosis. At present, because we do not have baseline screening, it is difficult to establish whether age or length of time living with HIV is the more important causative factor.

It was also recommended that as soon as the number of older patients allows, a cohort of patients over 65 should be established. At present over 50 is generally ‘old’ in HIV care, but patients older than this may need to be studied before we find out if many of us are going to lose our faculties as we age.

For the presentations at the BHIVA community seminar, see www.bhiva.org/cms1224475.asp