Ageing & HIV –
50Plus Research
Garry Brough
Membership & Involvement Officer
Terrence Higgins Trust
Setting the scene - UK
•
Newly diagnosed life expectancy now up to 70s
•
More people with HIV over 50 than ever before
in the UK (14,266 in 2010 – 21% of PLHIV)
•
New diagnoses doubled between 2002 and
2009, and two thirds were diagnosed late
Setting the scene - UK
•
Older adults often don’t consider themselves at
risk of HIV infection or think of using condoms
post-menopause
•
HIV prevention/testing is difficult as neither
Doctors nor patients want to discuss sex
•
GPs often fail to recognise HIV, as symptoms
may be similar to a range of age-related issues
Chronic HIV Infection and
‘Accelerated Ageing’
‘The evolution of people living with HIV into
ageing, long-term survivors demands a
revolution in HIV care.
ROAH finds that these relatively young
respondents (average age = 56) report 3 times
as many co-morbid conditions as adults 70
1
and older.’
‘Older Adults with HIV – An In-Depth Examination of an Emerging Population’, ed. Brennan et
al, 2009
1
Specific Health Issues and
Chronic HIV Infection
The inflammatory nature of HIV infection ‘ages’ the
body, increasing the risk of:
1.
2.
3.
4.
5.
6.
Cardiovascular disease
Non-AIDS-related cancers
Neurocognitive dysfunction
Renal dysfunction
Reduced bone mineral density
Frailty
50Plus Survey - UK
• Project funded by Joseph Rowntree Foundation
• 50Plus surveyed 410 people with HIV over 50
(70.3% gay/bisexual)
• Mix of long term survivors and newly diagnosed
(41.2% diagnosed after 2000)
• Oldest respondent was gay man aged 78
50 Plus Survey Results
Top-rated Concerns
• Financial Difficulties (79%)
• Inability To Care For Self (76%)
• Mental Health Issues or Depression (73%)
• Inability To Access Proper Healthcare (69%)
• Social Stigma & Discrimination (66%)
Financial Difficulties
“Somehow the category ‘financial difficulty’ doesn’t
begin to address the unending stress of
permanent financial anxiety”
“Lack of funds for my old age - since I was
diagnosed in 1985 I regarded this as a death
warrant and ceased to make any pension
provisions”
Inability to Care for Self
“My main concern is for how long I can
continue with my medication…. As I get
older will the problems get worse?”
“I am getting medical conditions that I
thought would come much later in life. I
wonder what is going to ‘go broke’ next.”
Mental Health & Depression
“I am particularly concerned about mental
impairment, and early onset of dementia”
“HIV has severe emotional links, causing me
sleeplessness, worry and the feeling of utter
destruction”
“If health and social care could be integrated
…and we also had access to peer led support
groups…. we might not end up running the risk
of falling into depression”
Inability To Access Proper
Healthcare
“My healthcare needs seem to becoming
more complex yet.... whenever I have a
problem… I am referred to my GP, but my
GP… refers me back to the HIV clinic as
they tend to see all problems in the
context of my HIV. I end up being piggy in
the middle”
Social Stigma & Discrimination
“I also fear that in case I need to be cared for, the
carer would be as ill-informed and prejudiced
about HIV as the rest of the general public”
“Would residential homes or places for the long
term sick have the expertise to be able to look
after an older person with HIV?”
What support people wanted
• Health & treatment information (86.3%)
• Social care (77.6%)
• Social support & networking (76.3%)
• Physical therapy (75.4%)
• Counselling/emotional support (73.4%)
Discussion: next steps
1. What are the needs of older PWHIV?
2. What services/support would be most
useful?
3. What are the next steps to setting up
services or initiating collaborations that
could provide a good model for future
work?
Thanks to:
Joseph Rowntree Foundation, MBARC & community
researchers, THT & Age UK staff, Community Advisory
Committee and all the survey respondents.
Further Information:
• 50Plus research findings– www.tht.org.uk/50plus
• ROAH Project (US) – www.acria.org/center/introduction
Peer Support:
• Community Forums thread - www.myhiv.org.uk