Ageing with HIV: Frailty, Fear and the Quest for a Good Life
For many people diagnosed with HIV in the 1980s and 1990s, old age was never part of the plan and for some in fact is a bit of a surprise! Advances in antiretroviral therapy have transformed HIV into a chronic, manageable condition for many. Today, more than half of people living with HIV (PLHIV) are over 50, and by 2030 nearly a quarter globally will be aged 65 or older. Survival is no longer the sole focus. The pressing question now is – what does it mean to age well with HIV?
A new qualitative study published in AIDS Care explores how older PLHIV in Sydney perceive frailty, ageing and quality of life (QOL). Conducted by a community-based team within the Sydney Local Health District, the study involved 40 in-depth interviews with people aged 53 to 74. What emerged was a nuanced portrait of resilience, anxiety, gratitude and a fierce determination to retain control.
“I Never Thought I’d Get This Old”
Many participants described ageing as unexpected. Diagnosed at a time when life expectancy after HIV was measured in months, some had internalised the belief that they would die young. Growing older, for them, felt like a bonus — even a privilege — especially after losing friends during the early epidemic.
Yet longevity brings new challenges. People living with HIV experience higher rates of comorbidities such as cardiovascular disease, diabetes, bone disorders and cognitive changes. In the study, 91% of participants were considered vulnerable to or already experiencing some level of frailty, as measured by the Edmonton Frailty Scale. Nearly one-third reported low quality of life scores.
Frailty — defined as a decline in physiological systems leading to increased vulnerability — proved to be an emotionally loaded concept. Many participants felt they were “too young” to be described as frail. The very word carried stigma, conjuring images of dependency and decline.
Still, most were open to assessment. Some found it confronting; others described it as empowering. Screening prompted reflection, increased awareness and, for some, a renewed commitment to self-management. A number expressed altruism — if being assessed could help others living with HIV, it was worth the discomfort.
Control, Independence and the Fear of Aged Care
Four major themes surfaced: control, change, independence and the future.
Control was paramount. Participants feared losing autonomy — over their bodies, finances, housing and end-of-life decisions. Many lived on government benefits and worried they would have little choice about where or how they received care. Aged care facilities were a particular source of anxiety, often informed by negative experiences with parents or friends.
Some voiced stark contingency plans, including support for voluntary assisted dying, should their quality of life deteriorate beyond what they deemed acceptable. These views were less about despair and more about preserving dignity and agency.
Independence was closely tied to quality of life. Participants spoke of the importance of creative expression, social connection, sexuality, and feeling safe to disclose their HIV status. Financial strain, rising living costs and reliance on pensions threatened that independence. For many, quality of life meant more than viral suppression — it meant having enough to “live with dignity.”
The Weight of Change — and the Power of Resilience
Ageing amplified existing concerns. More diagnoses, more medications, more appointments — the burden felt heavier for those already managing HIV. Some described feeling trapped by cascading health issues. Others worried about ageing alone, without children or partners to advocate for them.
And yet, the study also revealed striking heterogeneity. Not everyone feared the future. Some participants were optimistic, even joyful, about growing older. They saw each year as a gift. Decades of navigating stigma, discrimination and loss had forged resilience that now shaped how they approached ageing.
From Survival to Quality of Life
The findings align with the goals of the NSW Health HIV Strategy (2021–2025), which aims for at least 75% of PLWH to experience good quality of life. The study underscores that achieving this target requires more than clinical management. It demands holistic, person-centred care that addresses frailty, mental health, housing, finances and social inclusion.
Importantly, the research highlights the need to reframe frailty conversations. Rather than equating frailty with old age and decline, clinicians can focus on physical function, prevention and empowerment. Early, sensitive discussions may normalise screening and open pathways to interventions that maintain strength, mobility and independence.
As HIV care enters its fifth decade, the paradigm must shift from survival to flourishing. People living with HIV are not a monolith; they are diverse individuals with complex histories and aspirations. Listening to their voices — especially about control, dignity and what makes life worth living — is essential.
Ageing with HIV is no longer a rarity. It is a reality. The challenge now is to ensure those extra years are not only longer, but better.
This article is based on the work of Denise Cummins, Daniel O’Raw, Kurt Andersson and Samantha Bennett (03 February 2025), “I’m too young to be frail!”. HIV and attitudes on ageing, quality of life and being assessed for frailty, published in AIDS Care.
