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.
Rackstraw, Medical Director of the Mildmay
Hospital, spoke about the
basic features of a condition which is often called ‘HAND’, for HIV-associated neurological
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.
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
Professor of Neuropsychiatry, added more details.
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’.
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.
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
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.
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.
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.
presentations at the BHIVA community seminar, see www.bhiva.org/cms1224475.asp