What do older people living with HIV do to look after their own mental health?

Older people living with HIV describe a range of strategies to maintain or improve their mental health and emotional wellbeing, according to an English study published in AIDS Care. Many people said they shifted the focus of their attention away from HIV to other aspects of their lives. Getting support from external agencies and from other people living with HIV was also extremely important for many.

Dana Rosenfeld and colleagues conducted in-depth interviews with 76 people living with HIV for the HIV and Later Life (HALL) study. Participants were asked to describe their typical day, personal and medical histories, social relations, social support, and discuss living and ageing with HIV.

While all participants were over the age of 50 and the oldest was aged 87, half were in their early or mid-fifties and half had been living with HIV for ten years or less. Reflecting the largest groups in the UK epidemic, participants were a mix of white gay men, black African heterosexual men and women, and white heterosexual men and women.

Over half lived alone, half were not in paid work and half had an annual income of less than £10,400.

Participants often put their concerns in perspective by comparing their health with that of other people. For example, this man compared ageing with HIV with ‘normal ageing’:

“For a lot of older people, life’s a severe challenge anyway… there are plenty of other severely challenging conditions.” [gay man, fifties, diagnosed in the past decade]

Other comparisons were with specific people. This man viewed his own health through the lens of a life-long friend’s “terrible problems with his joints”. When he last saw his friend, he thought “I’m HIV, but look at him, he’s worse than me”. [gay man, fifties, diagnosed in the past decade]

For several participants, volunteering provided a focus, purpose, and opportunities to make a social contribution.

“As a survivor who was helped by my consultant, nurses, relatives, friends, I felt if they did that to me, why can’t I do it to others? … You can’t just receive and then you don’t give away”. [African woman, fifties, diagnosed in the past decade]

Interviewees said that volunteering helped keep them active, both physically and mentally. Several emphasised the value of leaving the house, shifting the focus from their own circumstances to the wider world. This man started volunteering at an HIV organisation when he realised:

“I can’t stay at home not doing anything… if I stay at home, that could lead to depression for me, just sitting down”. [African man, fifties, diagnosed in the past decade]

Many interviewees made a point of taking note of and focusing on positive aspects of their lives – for example, actively valuing and pursuing relationships and activities that improved wellbeing. While some spoke about the importance of friends or partners, others described simple pleasures:

“New things, little things, just going down to the river and having a walk.” [gay man, fifties, long-term diagnosed]

One man explained his philosophy:

“Live in the moment; enjoy what you’ve got; accept what you’ve got, accept what your life is”. [gay man, fifties, diagnosed in the past decade]

Although the challenges and disruptive impact of HIV is often emphasised, some interviewees actively valued their ability to maintain their previous activities, identities, and roles.

“I can still function, I can think, I can create, I can take photos, I can go out for dinner, I can cook dinner – I can do what normal, or non-HIV people, do. We, apart from pills, are non-HIV people”. [gay man, sixties, diagnosed in the past decade]

While recognising the benefits and necessity of HIV treatment, some participants found their daily medication a painful reminder of living with HIV. They took steps to ensure that their pills took on benign meanings, were embedded into daily routines or became part of the background.

“[I take] the pills like I do cholesterol pills. I don’t say, ‘Oh, those are the pills of HIV’, or ‘Look, every morning I’m HIV’”. [gay man, sixties, diagnosed in the past decade]

As well as shifting their focus away from HIV and their own concerns, many participants spoke about the benefit of the support they got from their HIV clinicians and from mental health services.

“My HIV brought me depression. Psychiatric, it helps. Now I’m okay. You become cool, they give you medication, you become all right, they advise you what to do.” [African woman, fifties, long-term diagnosed]

Many people sought therapies to supplement support from partners, friends or family.

“I’m a bit mixed up and sometimes I just find it useful talking to a third person who is completely removed from my personal life; who isn’t trying to go, no of course you’ll be all right, because they’re my friend or my family.” [gay man, fifties, long-term diagnosed]

For most participants, HIV organisations and support groups improved their wellbeing by providing practical help and guidance regarding benefits, adherence, disclosure and other issues. HIV-specific support also provided connections to other people living with HIV which countered participants’ isolation and distress, especially in the period immediately following their diagnosis.

“I’m not totally isolated because I’m connected to HIV people, HIV groups… The fundamental connection from one human being to another is absolutely imperative to being alive and feeling alive, and pursuing or finding happiness.” [white woman, sixties, diagnosed in the past decade]

There were a few interviewees who chose to avoid HIV groups because they wanted to minimise HIV’s role in their lives. They may have found groups helpful for a period after diagnosis but did not want to endlessly focus on the issue.

“The less you talk about it, the less you think about it.” [white man, sixties, diagnosed in the past decade]

However, the benefits of support from other people living with HIV was such an important theme in the interviews that the researchers described it more fully in another journal article. We have reported on it in another article on aidsmap.com.