People over the age of 50 now represent one third of all people living with HIV, but the social care, healthcare and welfare systems aren’t ready for this growing cohort, according to research published by the Terrence Higgins Trust today. They describe the situation as a ‘social care timebomb’.
A significant proportion of the older people living with HIV who took part in Terrence Higgins Trust’s research project were living below the poverty line and were socially isolated. Anxieties about their future health, independence and social care were common.
But the research found a divide between the experiences of people in their fifties and those in their late sixties and seventies. The older a person living with HIV got, the happier they felt, the better their wellbeing, and the lower their levels of HIV self-stigma.
The research project was notable for being peer-led, with a group of 12 older people living with HIV playing an active role in the research process. Shared use of language and shared experience may have helped research participants to relax and open up during interviews; the data were interpreted in the light of the peer researchers’ own experiences.
An initial questionnaire survey of 246 people (recruited through HIV community networks) was followed by in-depth, qualitative interviews with 30 people. These interviews used a life history approach, covering the participant’s life before their HIV diagnosis, the circumstances of their diagnosis, what life has been like since then, their current situation and how they felt about the future. Finally, 41 people took part in six group workshops, facilitated by peer researchers.
All participants and peer researchers were over the age of 50 and were living with HIV in the UK. While 78% of the survey respondents were men, this does reflect the profile of older people living with HIV in the UK (76% are men). Although most participants were in their fifties, the oldest was aged 82. Particular efforts were made to ensure that women and black African people took part in the workshops, but the researchers do say that fewer black African and transgender people took part in the research than they would have liked.
One third of participants were diagnosed before effective treatment became available in 1996. Their experiences were very different to those who were diagnosed later. People diagnosed earlier were more likely to be dependent on benefits, to have no employment and to have three or more additional health conditions. Their experiences in the 1980s and 1990s still marked them, as this man explained:
“Back then when they told me, they told me I had a maximum of five years to live, they were quite blatant about it. So that was the thing that stuck in my mind “FIVE YEARS”. I didn’t really care about anything for a while, I didn’t care about what people thought, about what my life could be, those five years were always there in the back of my mind. But even though I’m still here now, those five years have never left me ... in that respect the damage has been done from that early diagnosis.” (Male, 52, white British, gay, diagnosed in 1985).
Another key divide in experience related to age groups. People of working age, between 50 and 60, tended to express much more anxiety about finding or keeping employment and benefits. In contrast, participants over the age of 65 tended to be happier.
Over a third of those in the younger age group were reliant on benefits. Many described breaks in their career history, due to ill-health or earlier beliefs about their prognosis. They had often been out of the job market for several years and would find it difficult to compete against younger people for jobs. Those in work expressed concern about what would happen if they were no longer able to do their current work.
Women often expressed concerns about being able to care for the families:
“I just worry about providing for my children, that I can’t earn enough money, that I will get too sick to work. I worry about my health and money a lot.” (Female, 52, black African, heterosexual, diagnosed in 2016)
People aged 50 to 60 had many unanswered questions about what the future holds – financially, health-wise and socially. They expressed more concerns than their older peers aged 65+ about how they would be able to care for themselves or manage multiple health conditions.
“I think it’s how this illness is affecting us long-term. It damages your organs … those things I worry about. Is that the illness or the medication for the illness? Both, I think … growing old worries me. I wonder how it is going to affect me. What kind of illnesses and diseases will I get from it?” (Female, 51, white British, heterosexual, diagnosed in 2015).
Those in the older group expressed fewer concerns:
“I think I’ve just reached a point in my life now where I’m settled in myself, what will be will be ... you expect to get ill when you get old so that doesn’t really bother me. You stop caring what people think I suppose.” (Male, 73, white British, bisexual, diagnosed in 2012).
“I used to worry all the time, but now I just think be grateful for what you have. I was so ill I was at death’s door, but I’m still here, that’s something to be happy about … my children do the worrying for me.” (Female, 78, white British, heterosexual, diagnosed in 1996).
Moreover, the survey data suggested that those aged over 65 were more likely to rate their wellbeing as good or very good (77%, compared to 34% of the younger age group). They were less likely to experience self-stigma in relation to HIV or to their age, than the younger age group. They were half as likely to be concerned about finding or keeping a partner.
Poverty and social care
Over half (58%) of those surveyed were living on or below the poverty line, often in ways that directly impacted health or wellbeing. One man talked about avoiding turning the heating on in his flat, which exacerbated problems with his chest. Others talked about it being difficult to maintain social relationships when they couldn’t afford to go out.
People who were receiving benefits had the lowest levels of wellbeing and the highest levels of HIV self-stigma. The anxiety of being reassessed for benefits or the threat of benefits being stopped was considerable.
“The assessment is awful, so degrading - they try to trick you to make you give something away that would show you are pretending. Why would you pretend? I don’t want to be like this … they don’t seem to understand HIV at all, no two days are the same, one day I am fine and could work, tomorrow I can’t get out of bed.” (Female, 55, black African, heterosexual, diagnosed in 2000).
Two thirds of respondents did not own their own home. Insecurity around housing (now or in the future) was a recurrent theme. Participants felt a lack of power over where they live, no ability to change accommodation, and a fear that at any time their housing could be taken away or they would have to leave the community in which they lived.
Moreover, almost nine in ten had not made financial plans to fund their future social care needs. Many participants felt a lack of agency and control over their future care and support, with financial barriers limiting or eliminating their ability to get appropriate care. Many participants shared experiences of seeing the impact of poor quality care on their own parents and understood the reality that you ‘get what you pay for’ when it comes to social care.
These financial issues met with concerns about social care workers’ knowledge of HIV and discriminatory attitudes. The research highlighted several examples of extremely poor practice. One participant had their HIV status revealed to their brother when somebody delivering mobility equipment left a document mentioning their HIV status visible, leading to a complete loss of relationship with the brother. One man has been turned down by three residential care homes, on the basis of concerns about infection control and being an extra burden to staff.
Nine in ten survey respondents had at least one health condition in addition to HIV (co-morbidity), and over a quarter had five or more. People with more co-morbidities and more daily medications reported lower levels of wellbeing.
People were having their care managed by a large number of different health professionals, which meant that the care was rarely joined-up. Participants expressed sadness that HIV clinics are no longer ‘one stop shops’.
“It was just easier when you saw your HIV consultant for everything. You knew them, you had a relationship. With the GP you see a different person each time, so you have to go through your entire medical history, which for me is quite long, by the time you’ve done that the appointment’s over.” (Male, 62, white European, gay, diagnosed in 1988).
“It just gets so confusing – there are so many appointments. I have to go to four different hospitals.” (Female, 52, black African, heterosexual, diagnosed in 2003).
“It just gets on top of you all these different medications and side effects and medications for the side effects, statins, ART, insulin, stuff for my stomach ... it goes on and on.” (Male, 61, white British, diagnosed in 1990).
Isolation and stigma
A third of survey respondents were socially isolated and four-fifths experienced moderate to high levels of loneliness. Wellbeing decreased with increased social isolation.
“I have friends but I can’t afford to see them, I can’t work, I can’t afford hobbies, plus my health makes getting out hard. I feel very alone. I see my family but they don’t really like talking about my HIV, so there’s a separation.” (Male, 58, white British, gay, diagnosed in 2000).
“There’s always this question. There’s this kind of secret. A lot of people still don’t know that I have this illness and don’t know about my situation, why I don’t work or that I don’t work. I have a lot of shame about not working… I always felt I needed to guard myself.” (Female, 63, white European, heterosexual, diagnosed in 1992).
People who described isolation and loneliness were more likely to express HIV self-stigma. The researchers used the following definition of self-stigma: “Negative self-judgement resulting in shame, worthlessness and blame.”
Nearly half of all survey respondents were defined as having moderate levels of HIV self-stigma. It was more common in heterosexual participants than gay men, but people’s feelings could evolve:
“I used to feel like a time bomb, so scared that I would infect someone else. But since I have become undetectable that has really lifted. Being undetectable and understanding what that means has made such a difference.” (Female, 63, white European, heterosexual, diagnosed in 1992).
Ian Green, Chief Executive of Terrence Higgins Trust, commented: “People aged 50 and over are now the fastest growing group of people living with HIV, and new diagnoses in older people continue to rise. The issues they face can no longer be ignored, as the challenges of poverty, loneliness and social care grow more acute. As it stands, our welfare, health and social care systems are simply not ready for this and we could see a timebomb in the years to come.”
Terrence Higgins Trust. Uncharted Territory: A report into the first generation growing older with HIV, 2017. (Full text freely available).