Ageing & HIV: Responding to the Challenge Garry Brough Membership & Involvement Officer Terrence Higgins Trust

Workshop Structure UK Presentation Kenya Presentation Comments and questions Needs Assessment Group Discussion – finding the way forward Feedback

Setting the scene - UK Newly diagnosed life expectancy now up to 70s More people with HIV over 50 than ever before in the UK (8722 in 2007) Number set to double within 5 years in the UK, and in the USA over 50% of PLHIV will be >50

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 and older.’ 1 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 50Plus research 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 people wanted Health & treatment information Social care Social support & networking Physical therapy Counselling/emotional support

How do we further this agenda? Collaborative work between Elderly & HIV agencies to increase HIV awareness amongst older adults, to improve social care and to reduce stigma Engagement with clinical and primary care services to ensure health needs are met, greater levels of HIV awareness and clearer referral pathways Promote self-management strategies and what WE can do to help ourselves (exercise, nutrition, accessing support to improve physical & mental health outcomes)

Thanks to: Joseph Rowntree Foundation, MBARC & community researchers, THT & Age UK staff, ACRIA, Community Advisory Committee and all the survey respondents. Further Information: 50Plus Project – ROAH Project (US) –

Next steps: Needs Assessment 1.What are the local needs of older PLHIV? 2.Are there services for older adults or PLHIV? 3.If not, what services would be most useful? If there are, do they link? 4.What are the next steps to setting up services or initiating collaborations that could provide a good model for future work? 5.Other issues: funding/location of services?