Long-term care for an aging HIV population is uncharted territory, as researchers and physicians are seeing the effects of the first wave of individuals who have been on antiretroviral therapy (ART) for a significant period of time.
An increasing amount of academic and clinical research has begun to determine the mental, physical, and social impact of HIV on the aging population. In an updated report by Terrence Higgins Trust, investigators examined the needs and experiences of individuals living with HIV who are 50 years or older.
Furthermore, they emphasized the importance of a needed call to action for the HIV community and other advocates, to push for change and ensure the needs of the HIV-positive population are being fully met.
For the study, investigators conducted a survey of 55 questions on topics that included health, emotional wellbeing, and financial situation. Inclusion criteria for the project were that participants are 50 years or older, HIV-positive, and resided in the UK.
A total of 246 surveys were analyzed. The data period for HIV diagnosis represented in the survey respondents ranged from 1982 to 2016, aged 18 to 74 years at diagnosis. There were 32% of individuals diagnosed with HIV before effective treatment was available in the UK in 1996.
Peer researchers conducted a total of 30 interviews and 60 workshops with the study participants. The interviews were designed under the life history model of qualitative interviewing, and the workshops consisted of group discussion and activities inspired by deliberative event methodologies, according to the study.
A total of 307 HIV-positive individuals who were 50 years or older participated in the research. The results of the study showed a difference in both experience in need depending on whether a patient was diagnosed with HIV before or after effective ART became available.
Participants diagnosed before 1996 were more likely to be dependent on benefits as their sole or main source of income, and less likely to be employed part- or full-time. Furthermore, they were more likely to have 3 or more additional health conditions.
The investigators also found that needs and concerns differed between ages. Individuals living with HIV, aged 50 to 60 years, were concerned about seeking or retaining employment and benefits. In total, 36% were solely reliant on benefits, compared with 9% of individuals 65 years or older. Meanwhile, HIV-positive individuals 60 years or younger who received benefits experienced anxiety over being reassessed, or the threat of benefits stopping at any point in time.
Seventy-seven percent of survey respondents who were 65 years or older rated their wellbeing as good or very good, compared with one-third of respondents aged 50 to 60 years.
Since 2010, the financial situation for individuals living with HIV has deteriorated. The results of the survey showed 58% of respondents 50 years or older were defined as living on or below the poverty line. Additionally, one-third of patients with HIV were reliant on welfare benefits, one-third had not made financial plans for the future, and 84% were concerned about future financial difficulties.
Since 2010, more HIV-positive patients who are 50 years or older are concerned about their future finances compared with 7 years ago.
As the HIV community continues to age, they are faced with the prospect of managing multiple chronic conditions that become more complex by their interactions with HIV. On average, this patient population has 3 times as many long-term health conditions compared with the general population.
The investigators found that 81% of participants 50 years or older were concerned about how they would take care of themselves and mange everyday tasks in the future, while a quarter said they would have no one to help them if they ever needed support with daily tasks.
Overall, 81% of HIV-positive individuals 50 years or older were concerned about whether they would be able to access adequate social care in the future, and 88% had not made financial plans to fund future care needs.
Unfortunately, even patients who have been able to access social care services have faced discrimination from social care professionals due to their HIV-positive status.
Among HIV-patients 50 years or older, the survey results showed that 22% rated their wellbeing as bad or very bad, while an additional 39% rated it as fair. With increasing numbers of comorbidities, respondents reported lower levels of wellbeing and increasing numbers of necessary daily medications.
Nearly 8 of 10 respondents were concerned about memory loss and cognitive impairment as they continued to age, with many reporting struggles with remembering to take multiple medications, and remembering multiple health care appointments. Respondents were concerned with how they would cope in the future with managing their multiple health conditions.
To address these concerns among the aging population, investigators said strong support from primary care professional is key, and that effective, coordinated, holistic, and long-term condition management is essential for these patients as they continue to age.
Furthermore, the role of specialist HIV clinical staff will remain imperative to support the aging HIV-positive population. Some survey respondents reported concerns about what would happen once their HIV consultant––who they often see over decades–retired. The findings indicate a strong need for someone to play a coordinated clinical support role to ensure patients living with HIV are getting the coordinated long-term condition management they need, according to the authors.
Progress is needed among general practitioners (GPs), as they often lack knowledge around HIV and aging. Nineteen percent of respondents reported their GP had never given them information regarding HIV and aging.
Isolation and loneliness were also an issue among the aging HIV-positive population. One-third of respondents were socially isolated, and 82% experienced moderate-to-high levels of loneliness. Individuals 50 years or older who were living with HIV were at least 3 times more likely to experience high levels of loneliness compared with the general population. Additionally, there was a decrease in wellbeing as social isolation increased. Survey results indicated that 76% of respondents were concerned about loneliness in the future.
Although progress has been made in the HIV community, there is still a stigma that remains, including self-stigma. Respondents 50 years or older reported moderate-to-high levels of HIV self-stigma, but it decreased with increasing age. Self-stigma was found to be less common among HIV-positive men who have sex with men compared with HIV-positive heterosexuals. HIV self-stigma increased with increasing social isolation and loneliness.
Up-to-date education and understanding of HIV is still lacking, with little to no recent national HIV campaigns aimed at the general population. Participants reported difficulties telling family and friends their HIV status, which was particularly acute in those who were recently diagnosed.
According to the authors, women living with HIV have been “invisible” in the UK, despite more than one-third of women accounting for a quarter of all new HIV diagnoses. During the research, women said they had specific concerns and experiences related to HIV and aging. Women reported lower levels of wellbeing than men, with 28% of women rating their wellbeing as very good or good compared with 41% of men. In regards to financial stability, women on average have lower incomes than men.
Women were most concerned about all aspects of growing older with HIV than men. Furthermore, they were most concerned about the long-term effects of HIV and ART, and how they would manage comorbidities. Across all aspects of the research, caring for family was a strong concern of the female participants.
“A new generation of people living with HIV are living into older age,” the authors wrote. “While many will continue to live without the need for additional health and social care services of financial support, the 207 people involved in this research have shown that just as often this isn’t the case. There is a major cohort of individuals growing older with HIV who, now and in the future, require significant levels of support.”
Many support needs affect more than just the HIV community, with the welfare and social care systems across the UK failing multiple populations.
“However, we have found that living with HIV adds an extra level of need––additional necessities that go beyond the ‘standard’ experience of aging,” the authors wrote.
Since the UK reduced NHS, the future of public health and social care budgets is uncertain.
“The opportunity exists to ensure that the needs of people aging with HIV are central to discussions, policy change, and structural change that is currently happening,” the authors wrote. “People living with HIV [50 years or older] must be at the heart of this action––the voices of older people living with HIV have too often been absent.
“Together we can be the generation that pushes for change to ensure that all people living with HIV have a positive experience of aging.
By Lauren Santye