People with HIV are now living into old age – an old age many regard with fear, as Lisa Power from the Terrence Higgins Trust finds out.
HIV has been an arena of constant change for the past 30 years. In countries such as the UK, where modern treatment advances and high quality health care are available, people with HIV are increasingly living into old age.
Science and medicine have outstripped public understanding, which lags behind, continuing to characterise HIV as a ‘killer disease’ and feeding the stigma associated with it.
But with good quality treatment, someone diagnosed now in their mid-30s (as is most common) can hope to live into their 70s. Studies still report that HIV cuts, on average, eight to ten years off life expectancy, about as much as smoking 20-a-day. But that’s as good as or better than many other chronic, long-term, life-threatening conditions, and it continues to improve all the time, with some groups of people with HIV now on a par with the general public.
“Having not expected to live this long, it’s quite a shock to deal with the onset of old age.” White, gay man, 60
This should be a very good thing – but the story is not as simple as that. What quality of life will older people with HIV face? Will social care be adequate for an influx of older people with HIV? Evidence suggests that the virus may accelerate the ageing process in some respects, even in people on treatment. Older people with HIV may need more care, or more specialised care, than average. Are we prepared for this?
The 50 Plus project
In 2008, the Department for Work & Pensions reviewed the ‘Special Rules’ benefits on which some people with HIV had historically depended. Assessed in the 1980s and 1990s as likely to die soon, many people were advised to leave work, cash in their pensions, dump their mortgages and enjoy the time they had left.
Now, it became clear, many were facing the reality of surviving to old age with little hope of returning to employment, on reduced benefits and, eventually, a basic state pension.
By 2008, one person in six being seen for HIV care in the UK was aged 50 or over. This is projected to double over the next five years as people live longer or are diagnosed later in life.
Terrence Higgins Trust and Age UK (formerly Age Concern and Help the Aged) identified that, while research was being done into the clinical needs of older people with HIV in the UK, there was little research on the social impact of ageing comparable to that being undertaken in the US by ACRIA (the AIDS Community Research Initiative of America). The two organisations received support from The Joseph Rowntree Foundation to survey older people with HIV, concentrating on social care needs within a wider context – the 50 Plus project.
The resulting report focuses on people with HIV’s own views of the future. It includes recommendations for action for policymakers, the NHS, local authorities, charitable funders and HIV- and age-related organisations.
The 50 Plus project heard from 410 people with HIV aged 50 and over – one in 25 of all those currently being seen for care – about their current life and, above all, what their views of their future life were, through online and paper surveys. Forty of the respondents were also interviewed in depth.
The group broadly reflected the make-up of the HIV-positive population in that age group, including people diagnosed from the 1980s right up into the current year. The report analysed the data not only for older adults with HIV as a group, but also by comparing three of the largest sub-groups: gay/bisexual men, black African women and white heterosexuals.
While these groups had much in common, they also had significant differences in their attitudes, needs and characteristics. Gay and bisexual men are by far the largest community of over-50s with HIV, but black African women can face complex challenges that often differ from other populations. White heterosexual people, often neglected in HIV studies, are particularly well-represented in this age group.
“I am worried that too many clinics, hospitals and practitioners are treating me for separate illnesses. There is one hospital for my HIV, another for HPV and two GPs for cardiovascular problems.” White, gay man, 60
Physical health and health care: The vast majority of respondents were on HIV treatment, with over half reporting side-effects. Just under two-thirds were also on treatment for other long-term conditions.
We found almost twice as many other long-term conditions than we would expect in the general public at this age. These conditions, like high blood pressure, kidney and liver problems and arthritis, are mostly conditions of ageing but can also be exacerbated by HIV itself and, in some cases, HIV treatment.
Despite the fact that most people were registered with a GP, and most had disclosed their HIV to them, there were extensive experiences of poor treatment in primary and generalist healthcare settings. Older people use their GPs and primary care far more often than younger people; they need as strong and positive a relationship with them as with their HIV clinicians.
“The local GP I don’t think I’ve seen at all. I went to one at the very beginning and found her so unhelpful and freaked out about the fact that I was HIV … I never went back there again.” White, heterosexual woman, 55
This indicates an urgent need to improve the quality of primary care for people with HIV and for better interaction between HIV specialists and other clinicians. Black African women and other migrants in particular reported difficulties in accessing health care and needed more support to negotiate the system.
The single most common future need expressed was for good quality treatment and health information, indicating high levels of clinical uncertainty and threats to health. Many co-morbidities reported could be improved or reduced by lifestyle interventions like good nutrition, exercise and smoking cessation. People want to know more about these issues and how to take better care of themselves.
People reported varying levels of sexual activity. Almost two-thirds were sexually active in the previous year. A quarter had one partner, but one in six (all of them gay/bisexual men) reported more than ten partners in the previous year. HIV testing and sexual health promotion services need to take this into account when planning initiatives and explicitly consider the needs of sexually active older adults. A number of people commented that they felt left out by a lot of current sexual health promotion.
Mental health: This group also reported substantial levels of depression and mental health concerns and a higher level of concern for future mental health. There is a need to identify or develop counselling, emotional support and other strategies to improve emotional wellbeing in older people with HIV.
“…feeling overwhelmed by my circumstances and the state of mind I was in that I made myself vulnerable to getting HIV…I’ve had to question why I allowed that to happen. It’s to do with guilt.” White, heterosexual woman, 51
Social care: Three-quarters of the respondents were concerned about access to social care (such as home helps) in the future. Given that half of them already reported mobility problems and almost half had difficulties with everyday activities, this is unsurprising. Many people expressed fears about needing to use home or residential care because of perceived prejudice and ignorance about HIV within these services – a fear borne out by some of the experiences already related to interviewers in the qualitative part of this survey.
THT advocacy workers have already come across cases of poor treatment by providers of social care services to older people. Better staff training and clear management standards for clients with HIV are needed – funders should ensure these are included amongst quality measures. Given the imminent removal of the ring fence on the AIDS Support Grant in England, and cutbacks in all the countries of the UK, it is unlikely that there will be many specialist HIV care services in the future. We are going to need to make general services acceptable and accessible to people with HIV.
“I…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.” Bisexual man, 51
Money and work: People with HIV aged 50 or over were, in comparison with their peers, less likely to be economically active and far less likely to have a financial cushion for their old age. Almost half sometimes or never had enough money to manage on, and they expressed serious fears about how they would manage financially in the future. Black African women were the worst off financially.
While around a third of respondents were working, almost as many were reliant on state benefits. Half of those surveyed were not confident that they understood their entitlement to benefits and many were worried about possibly losing benefits in the future. Returning to the workplace, while it may be good for financial security, for mental health and for long-term wellbeing, is not an easy thing for many people who have long relied on disability benefits, and is simply not possible for some.
People with HIV aged 50 or over need support to stay in or re-enter the workplace – where possible; where not, they need good, clear advice on benefit entitlements. They also need access to debt counselling and financial planning as an integral part of long-term condition management.
“I would like to go back to work but I can’t afford...because of the rent and…there’s many out there like me. If we had the opportunity...there are many people out there that are willing to move on with their lives.” Black African man, 55
Housing: Home ownership was lower in this group than amongst their peers, and they were more likely to be in council or housing association stock or in private rented accommodation. Widespread concern about needing to go into a care home or sheltered housing in the future – perceived to be unlikely to be supportive to people with HIV – again featured. Additionally, gay and bisexual men feared homophobia within these settings. HIV organisations need to work with providers of social housing and care homes for older people to help them audit their policy and practice around HIV and gay issues.
Social wellbeing and seeking support: Many people reported social isolation and a need for greater social contact, including a need for general social support, which is currently more likely to be met in services for older people than those for HIV. However, there was a clear overall preference for using HIV organisations to get services.
“I am somewhat fearful of a lonely old age. In practical terms, if I become mentally or physically frail, the prospect of being the only gay man in an old people’s home is very frightening indeed.” Gay man, 52
Although many people reported good service from particular agencies in both sectors, no UK service was widely identified as being suitable for older people with HIV. Rightly or wrongly, the perception from many was that mainstream organisations for older people may not understand HIV and both HIV services and those for older people need to work together to change this.
Many older people were using volunteering as a route to social contact with other people with HIV – volunteering opportunities for older people with HIV need to be maximised. Not only would this increase social involvement, it could also contribute to making services more representative of and appropriate to older adults with HIV.
“Working as a health care worker...I have seen and heard the nurses stigmatise patients. I’ve heard them say make sure you always wear gloves and use plastic spoons, plates...I think one day I am going to be ill and I am going to be treated the same way.” Black African woman, 51
Disclosure and discrimination: The greatest surprise within the findings was the overwhelmingly positive or neutral outcomes reported by people disclosing their HIV status. This differs considerably from some narratives within the HIV sector, which can posit disclosure as a negative and dangerous action. In talking with colleagues about this finding, we have faced responses from “of course that’s true” to “but that can’t be right”. It seems that the whole issue of disclosure and its genuine impact is ripe for exploration and discussion.
This finding did vary between groups and settings, however, and those negative outcomes could have important consequences. No African woman, for example, reported an improved relationship from telling their partner, though many reported good outcomes from other family and friends. There is a need for services to constructively support older people with HIV in making informed decisions about disclosure. Further research into the impact of disclosure should also be undertaken with a balanced all-ages sample of people with HIV.
“My Mum just carried on drinking her tea. I never had any fear of telling anyone I got it.” Gay man, 50
One in five people did report experiencing discrimination in a variety of ways in the past year, either because of age or HIV status. Overall, people were as likely to report age discrimination as HIV discrimination, but in two areas – health care and provision of goods and services – HIV discrimination was by far the higher. Given the theme running throughout the research of problematic relationships with primary and non-specialist health care, it is clear that the NHS and other statutory bodies need to show greater leadership in challenging HIV stigma. A good example of this is the recent Welsh Assembly inquiry into HIV discrimination by healthcare professionals.
A number of other examples of good practice were identified, including four projects from the US, which could easily be adapted to the situation in the UK. They included an employment project, a project providing targeted advocacy for LGBT older people, a speakers’ bureau for older people willing to talk about HIV and sexual health to their peers and a care home for LGBT people, which specifically welcomes people with HIV.
The US has benefited from HIV and ageing experts, working within both medicine and policy, collaborating to improve services for older people with HIV and challenge age and HIV discrimination in their respective areas.
“Hiding my rape from people, I thought that was harsh, but HIV is worse. HIV is like you are a slut, or you sleep with gays. People back home…won’t come to your house, your children will be mocked.” Black African woman, 51
Finally, in terms of the specific populations examined within the report, it was clear that, while much about HIV and ageing bound them together, each group showed strong and specific characteristics. Gay men had immense fears for the future around how care services would cope with any gay man, let alone gay men with HIV, yet they also felt marginalised within a youth-obsessed gay culture.
Black African women had by far the hardest time overall, coping with poverty, poor housing, treatment access and migration issues, as well as major HIV stigma within their cultures.
“You know this is a new life for me, I am living again. This is my chance of living. I don’t think if I was at home I would get my 50th birthday – that’s for sure.” – Black African woman, 51
White heterosexual people reported considerable isolation, financial concerns and a sense that existing services did not prioritise their needs.
This research is far from the last word on HIV, ageing and social issues in the UK, but should be seen as the start of a dialogue between older people with HIV, organisations that provide services and policymakers and funders. Older people with HIV face an uncertain future in many ways; the knowledge generated by this report enables us to change for the better how our society supports them in that challenge.
For more information
A summary of findings will be available at the 2010 International AIDS Conference and subsequently from both THT and Age UK. The full report will be published online by the Joseph Rowntree Foundation (www.jrf.org.uk). Further data, including all statistical charts and the full literature review, are available from www.tht.org.uk/50Plus.