Though GPs miss diagnosis in gay men and Africans as well, so we shouldn’t be too easy on them re- older adults
The US population researched in the ROAH study was NY-based and different to the UK, in that it has far higher numbers of IDUs with HIV, who also have higher numbers of comorbidities. WE don’t see quite as many co-morbidities here in the UK, thankfully.
For someone with chronic HIV infection, the scenario equates to being approx 10-15 years older than their biological age, in relation to the oxidative stress of HIV inflammation. It should be noted, however, that new research seems to indicate that PLHIV do NOT in fact seem to have earlier rates of cancer than their negative counterparts.
Collaboration between THT & Age UK (formerly Age Concern & Help The Aged) According to SOPHID data, our sample of 410 = 4% of the 10,286 diagnosed PLHIV >50 in the UK Although a high proportion overall, the 70% figure of gay men corresponds to the demographics amongst over 50’s in the UK Regional demographics matched as well – 44% PWHIV >50 are London-based, and in our survey it was 46% - 7 respondents from Scotland Heterosexual African men were under-represented in the quantitative survey, however we interviewed more for the qualitative research to counter the imbalance. The analysis in the report focuses mainly on gay men and Africa women, but disaggregated data for white heterosexuals as there was better representation than expected.
We asked people to rate from 1-5 their most important concerns. The categories that didn’t make the top 5 were Loneliness, Employment and Finding a Partner, though amongst Black African Women, Employment was their number 2 choice
Finances were problematic for different reasons in different groups: African women who had migrated to the UK had more difficulties around right to work, whereas older gay men tended to be long-term diagnosed and on benefits, having been told to cash in their pensions in the 80/90’s
Self-care issues for gay men were strongly linked to fears around homophobia as much as HIV stigma Significant anxieties about cognitive impairment impacting adherence
There are higher levels of mental health difficulties & depression in the HIV population, as there are for older adults Older adults & PLHIV experience higher levels of isolation, so the problem is further magnified in this population. Add in employment issues, financial problems and ill health and the combination make this a highly significant cause for concern. Social interaction is needed to counter this, and whilst there was discussion of targeted support, there was also a desire for mixed groups in terms of both culture and sexuality. Volunteering was mentioned in various instances as a way of maintaining social contact and self esteem where job opportunities were not available
The link between Primary and Secondary Care is problematic enough, but with the likelihood of a high number of age- and HIV-related co-morbidities likely to affect this population, easy access to other specialists is going to be needed. While a small number of respondents praised their GP and many more spoke positively about HIV clinicians, the majority of people complained bitterly about the lack of HIV awareness in primary care and the level of disrespectful and discriminatory behaviour.
So if a GP can’t get it right, how do we expect nursing home staff or home help to be any better? Stigma & discrimination came up often in relation to healthcare as it is the area where most people disclose and is therefore the place to prioritise education/awareness, since there is still a shockingly low level of awareness around HIV. Interestingly, on the ‘carehome.co.uk’ website there are currently 166 residential homes listed as specialising in HIV/AIDS. We don’t know exactly what level of knowledge and expertise is present in these facilities, but as we move forward with this work, assessing these homes for suitability will be essential
Note that although financial difficulties was highest on list, it’s not there in top 5 future support needs – why? Is it because people feel that there’s nothing that we can do about this? If this is the case we need to get the message out that there is support available on this issue.
We asked these questions at the Vienna Community Workshop and split the group into Global North & South 30 minutes of lively discussion and interaction resulted in over 30 suggestions which gratifyingly mirrored the 24 recommendations that THT made in the 50plus report
Workshop participants from all over the world all agreed that to date there was little consideration of these issues and no preparation yet made. Partnership Building & Training were universally highlighted as priorities to ensure services were ready and prepared for PWHIV These are areas where we need to create partnerships or improve connections & referral pathways
Self-Management was flagged up as an essential component in future planning. As well as supporting those who are already over 50, there was much support for flagging up Ageing issues and preventative strategies for those approaching 50 Prevention is better than treatment, and although clinicians may be more comfortable with treating what’s wrong, they need to consider how to empower patients to make proactive health choices or at least consider referrals to agencies that have the capacity to encourage and support this.
US ROAH Project informed our survey as did the fact-finding trip to the US, where we found that even though they are already further along in terms of an ageing population with HIV, they are not much further ahead as far as service provision is concerned.
Ageing & HIV - 50 Plus Research
Ageing & HIV – 50Plus Research Garry Brough Membership & Involvement Officer Terrence Higgins Trust
Setting the scene - UK <ul><li>Newly diagnosed life expectancy now up to 70s </li></ul><ul><li>More people with HIV over 50 than ever before in the UK (8722 in 2007) </li></ul><ul><li>Number set to double within 5 years in the UK, and in the USA over 50% of PLHIV will be >50 </li></ul>
Setting the scene - UK <ul><li>Older adults often don’t consider themselves at risk of HIV infection or think of using condoms post-menopause </li></ul><ul><li>HIV prevention/testing is difficult as neither Doctors nor patients want to discuss sex </li></ul><ul><li>GPs often fail to recognise HIV, as symptoms may be similar to a range of age-related issues </li></ul>
Chronic HIV Infection and ‘Accelerated Ageing’ <ul><li>‘ 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 </li></ul>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 <ul><li>The inflammatory nature of HIV infection ‘ages’ the body, increasing the risk of: </li></ul><ul><li>Cardiovascular disease </li></ul><ul><li>Non-AIDS-related cancers </li></ul><ul><li>Neurocognitive dysfunction </li></ul><ul><li>Renal dysfunction </li></ul><ul><li>Reduced bone mineral density </li></ul><ul><li>Frailty </li></ul>
50Plus Survey - UK <ul><li>Project funded by Joseph Rowntree Foundation </li></ul><ul><li>50Plus surveyed 410 people with HIV over 50 (70.3% gay/bisexual) </li></ul><ul><li>Mix of long term survivors and newly diagnosed (41.2% diagnosed after 2000) </li></ul><ul><li>Oldest respondent was gay man aged 78 </li></ul>
50 Plus Survey Results <ul><li>Top-rated Concerns </li></ul><ul><li>Financial Difficulties (79%) </li></ul><ul><li>Inability To Care For Self (76%) </li></ul><ul><li>Mental Health Issues or Depression (73%) </li></ul><ul><li>Inability To Access Proper Healthcare (69%) </li></ul><ul><li>Social Stigma & Discrimination (66%) </li></ul>
Financial Difficulties <ul><li>“ Somehow the category ‘financial difficulty’ doesn’t begin to address the unending stress of permanent financial anxiety” </li></ul><ul><li>“ 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” </li></ul>
Inability to Care for Self <ul><li>“ My main concern is for how long I can continue with my medication…. As I get older will the problems get worse?” </li></ul><ul><li>“ I am getting medical conditions that I thought would come much later in life. I wonder what is going to ‘go broke’ next.” </li></ul>
Mental Health & Depression <ul><li>“ I am particularly concerned about mental impairment, and early onset of dementia” </li></ul><ul><li>“ HIV has severe emotional links, causing me sleeplessness, worry and the feeling of utter destruction” </li></ul><ul><li>“ 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” </li></ul>
Inability To Access Proper Healthcare <ul><li>“ 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” </li></ul>
Social Stigma & Discrimination <ul><li>“ 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” </li></ul><ul><li>“ Would residential homes or places for the long term sick have the expertise to be able to look after an older person with HIV?” </li></ul>
What support people wanted <ul><li>Health & treatment information (86.3%) </li></ul><ul><li>Social care (77.6%) </li></ul><ul><li>Social support & networking (76.3%) </li></ul><ul><li>Physical therapy (75.4%) </li></ul><ul><li>Counselling/emotional support (73.4%) </li></ul>
Vienna discussion: next steps <ul><li>What are the needs of older PWHIV? </li></ul><ul><li>What services would be most useful? </li></ul><ul><li>What are the next steps to setting up services or initiating collaborations that could provide a good model for future work? </li></ul>
Vienna Workshop Feedback: <ul><li>Forge partnerships and improve links between the NHS and HIV, Age & Social Care Services </li></ul><ul><li>Improve referral pathways between Primary, Secondary & Specialist Care for co-morbidities </li></ul><ul><li>Ensure Age Organisations, Social Care Services, GPs and related clinical Specialists are HIV-aware </li></ul>
Vienna Workshop Feedback: <ul><li>Improve health literacy on co-morbidities & preventative solutions in under 50’s </li></ul><ul><li>Promote proactive self management strategies for exercise, nutrition and lifestyle changes </li></ul><ul><li>Increase social activities to prevent isolation </li></ul><ul><li>Targeted testing & prevention for over 50’s </li></ul>
Thanks to: <ul><li>Joseph Rowntree Foundation, MBARC & community researchers, THT & Age UK staff, Community Advisory Committee and all the survey respondents. </li></ul><ul><li>Further Information : </li></ul><ul><li>50Plus research findings– www.tht.org.uk/50plus </li></ul><ul><li>ROAH Project (US) – www.acria.org/center/introduction </li></ul><ul><li>Support: </li></ul><ul><li>Community Forums - www.myhiv.org.uk </li></ul>