The HIV Journey: Adulthood to Old Age, run facilitated by Garry

							   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.’

   1‘Older Adults with HIV – An In-Depth Examination of an Emerging Population’, ed. Brennan et
   al, 2009
Specific Health Issues and
Chronic HIV Infection
The inflammatory nature of HIV infection ‘ages’ the
   body, increasing the risk of:

1.   Cardiovascular disease
2.   Non-AIDS-related cancers
3.   Neurocognitive dysfunction
4.   Renal dysfunction
5.   Reduced bone mineral density
6.   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