Growing population of older people living with HIV is invisible

 Largest multi-method study of living with HIV in later life

  • More than one in five adults living with diagnosed HIV in 2011 were aged 50 years or older, up from one in nine in 2002
  • Link between the length of time with HIV and lower satisfaction with quality of life and with personal relationships
  • Ageing with HIV ‘uncharted territory’
  • Experience of ageing with HIV affected by local community

Thirty years on from the discovery of the human immunodeficiency virus (HIV), a Keele University-led study reveals that people living with HIV in later life feel they face an uncertain future. For many, the longer they live with the virus, the more they feel the quality of life to be compromised.

Researchers at Keele University, alongside partners at Homerton University Hospital, Chelsea and Westminster Hospital, South Kensington and Chelsea Mental Health Centre, the University of Westminster, Public Health England, and i-Base are now recommending that policymakers better prepare for this ageing population.

While the use of anti-retroviral medication has, for many, transformed HIV into a manageable, long-term condition, it has enabled what was never thought possible – an ageing population of people with HIV, who are living for many decades and into old age.  The Keele-led study, funded by the Lifelong Health and Wellbeing Cross-Council Programme, is the largest multi-method study into the social impact of living with HIV at age 50 or above.

The study shows that there is a link between the length of time older people have lived with HIV and reduced satisfaction with their quality of life and personal relationships. On a five-point scale, those living with HIV for 10 years had a median score of 3 for Quality of Life, whereas those who had been more recently diagnosed had a median score of 4: a difference of 20%.

Amongst gay men, quality of life began to drop off after ten years of living with HIV, then rose slightly. But the perceived quality of life of Black African and White heterosexual men and women dropped slightly but steadily over time, possibly due to differences in HIV-related support from friends and others in their local communities.

However, there was no link between the length of time someone had been living with HIV and informants’ own perception of their physical health, suggesting that living with HIV has more adverse effects on people’s social and personal lives than on their perceived physical wellbeing over time.

The study, which interviewed and surveyed more than 120 people aged 50-86, shows that most informants felt that ageing with HIV is highly stigmatized in society. Most were anxious over the unknown nature of how ageing with HIV compares or differs from ‘normal ageing’.

The fact that the clinical impact of HIV in later life is unknown was deeply felt by respondents. Other issues making living with HIV in later life particularly challenging include disclosing HIV status to others such as children (52% of the sample were parents) and life-long friends, the physical cost of HIV, and uncertainty about the future, particularly in relation to long-term care and life expectancy.

Dr Dana Rosenfeld, a social gerontologist at Keele University, explains: “The UK population of people with HIV is rapidly ageing, both because of medications that extend lives and increased incidence of HIV acquisition in later years. This is the first generation of people to age with HIV, and they are entering uncharted territory. Our results show that the consequences of living with HIV in later life are much more significant and complex than we could have foreseen thirty years ago.

“Firstly, the experience of ageing with HIV is heavily influenced by community context. Many older gay men came of age in the shadow of the AIDS epidemic of the 1980s-1990s, have lost many close friends to AIDS, and were more likely to know other people (and other older people) with HIV and HIV support organisations. However, heterosexual people living with HIV were less likely to have the same social support networks.

“Black African heterosexual participants in the study had more intimate personal histories with HIV than white heterosexuals, having witnessed high rates of AIDS-related death in their home countries. But they were much less likely to disclose their HIV status to others than were the gay men, both because of high rates of stigma within the black African community and because of worries that news of their status would reach family members in their home countries. Finally, on the whole, white heterosexuals were the least personally familiar with and knowledgeable about HIV, and lacked a community based on ethnicity or sexual orientation, and so lacked community support.

“Secondly, people living with HIV find it problematic to distinguish between the physical effects of ageing and symptoms associated with HIV or with HIV medications, and these are not as well understood within the clinical community as they would like. There are few people who have already experienced ageing with HIV to whom they can turn for guidance. This makes it even more difficult to understand the significance of, or appropriately respond to, physical changes, even those that are ultimately not HIV-related.

“Perhaps more significantly, many older people living with HIV feel vulnerable to age-related stigma, as they imagine it will be interpreted by others as evidence of sexual activity that they feel is inappropriate for older people. Acquiring HIV in later life can threaten relations with friends, family, and other forms of social support upon which older people had assumed they could rely in their later years.”

Indeed, the enduring stigma surrounding HIV, in the context of complex social relationships and networks typical of later years, make the personal and social consequences of living with HIV at later ages particularly difficult to manage.

The study showed that many of the individuals ageing with HIV felt the virus impacted negatively on their friendships, family and romantic relations. For example, 78% of the sample listed friends as among the people to whom they felt the closest, but only 63% listed their friends as among those who knew that they were living with HIV. Although a third of the sample was partnered, many respondents – primarily but not exclusively heterosexuals – felt that their chances of having a romantic relationship were compromised or even erased entirely due to their HIV status. Many stated that forming a partnership with someone who was also living with HIV would provide more support and make the issue of disclosure much more manageable.

As well as highlighting challenges, the study also demonstrates there is a sense of wellbeing and success among many older people living with HIV. Many rated their quality of life and satisfaction with personal relationship and social support highly, and described living fulfilling and purposeful lives. Many were in work or voluntary positions and attending HIV support groups. Most were very happy with their HIV specialist care. Several people described using their HIV diagnosis as an inspiration to improve their lives and embrace new challenges, with most participants in the study feeling very lucky to have survived into later years, although the uncertainty of living with HIV in later years was a continuous source of anxiety for many.

Dr. Rosenfeld adds: “The population of people with HIV is ageing, as is the population who are HIV-free. The number of older people living with HIV in the UK has tripled in the last nine years. An increased awareness of the needs and strengths of this growing population, together with plans to support people with HIV in old age, are now needed.”

Professor Jane Anderson, lead investigator at Homerton Hospital, said: “Although improved diagnosis, treatment and care can secure a near normal life expectancy for people with HIV, many complex issues remain to be resolved. This study emphasises the needs of older people with HIV for integrated care and for further energy to be put into tackling HIV associated stigma.  Getting older with HIV is far from easy – we need to ensure that the right support is there at the right time.”

David Asboe, lead investigator at Chelsea and Westminster Hospital and clinician working with older people with HIV, said: “The success of antiretroviral therapy, together with the fact that people are becoming infected later in life is leading to increased numbers of baby boomers living with HIV. Estimates are that by 2015, almost half of people living with HIV in the West will be aged 50 and above.

“It is therefore crucial that we work to reduce the risk of further infections among older people by tailoring prevention messages and other interventions appropriately. We must also ensure that testing helps identify HIV diagnoses promptly, in order to maximize the benefits of antiretroviral therapy. 

“HIV health professionals are already adapting medical treatment and care to take account of HIV and its effect on other conditions of ageing such as cardiovascular disease and cancer. However, this study – the first of its kind – demonstrates the importance of how ageing also dramatically affects the psychological and social aspects of quality of life with HIV.”

Professor Ridge, lead investigator at the University of Westminster said, “The relatively high levels of anxiety and depression, particularly among some groups, like those with the least income, is concerning. Many people said they really needed to talk about their HIV. But that’s more difficult when friends and family don’t know what is happening due to stigma.”

Keele University