Ageing & HIV – 50Plus Research

Garry BroughMembership & 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 (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 disease2. Non-AIDS-related cancers3. Neurocognitive dysfunction4. Renal dysfunction5. Reduced bone mineral density6. 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%)

Vienna discussion: next steps

1. What are the needs of older PWHIV?

2. What services 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?

Vienna Workshop Feedback:

• Forge partnerships and improve links between the NHS and HIV, Age & Social Care Services

• Improve referral pathways between Primary, Secondary & Specialist Care for co-morbidities

• Ensure Age Organisations, Social Care Services, GPs and related clinical Specialists are HIV-aware

Vienna Workshop Feedback:

• Improve health literacy on co-morbidities & preventative solutions in under 50’s

• Promote proactive self management strategies for exercise, nutrition and lifestyle changes

• Increase social activities to prevent isolation

• Targeted testing & prevention for over 50’s

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

Support:• Community Forums - www.myhiv.org.uk