HIV/AIDS in Later Life
Summary and Keywords
Since the first cluster of people with HIV was identified in 1981, significant biomedical advances, most notably the development of antiretroviral therapy (ART), have led to considerably increased life expectancy as well as a reduction in the morbidity and mortality associated with HIV/AIDS. As a result, HIV/AIDS is no longer considered a terminal illness, but rather a chronic illness, and many persons living with HIV/AIDS are beginning to enter or have already reached later life. In fact, Americans ages 50 years and older comprise approximately half of all individuals with HIV/AIDS and represent the most rapidly growing subpopulation of persons living with HIV/AIDS in the United States.
Despite significant advances in HIV/AIDS treatment and prognosis, older adults living with HIV (OALH) face a number of unique challenges and circumstances that can lead to exacerbated symptoms and poorer outcomes, despite demonstrating generally better ART adherence than their younger counterparts. These detrimental outcomes are due to both chronological aging and cohort effects as well as social and behavioral factors and long-term ART use. For instance, neurocognitive deficits and neuropsychiatric symptoms, including depression, anxiety, apathy, and fatigue, are often observed among OALH, which can result in feelings of loneliness, social isolation, and reduced social support. Taken together, these factors can lead to elevated levels of problems with everyday functioning (e.g., activities of daily living) among OALH. In addition, sociocultural factors such as race/ethnicity, ageism, sexism, homophobia, transphobia, geographic region, socioeconomic status and financial well-being, systemic barriers and disparities, and cultural values and beliefs play an influential role in determining outcomes.
Notwithstanding the challenges associated with living with HIV/AIDS in later life, many persons living with HIV/AIDS are aging successfully. HIV/AIDS survivor and community mobilization efforts, as well as integrated care models, have resulted in some significant improvements in overall HIV/AIDS patient care. In addition, interventions aimed at improving successful aging outcomes among OALH are being developed in an attempt to effectively reduce the psychological and physical morbidity associated with HIV disease.
Since the development of antiretroviral therapy (ART) in the late 1980s, persons living with HIV are now able to live into later life, often without substantial morbidity when ART is initiated before advanced disease stages (Hunt, Lee, & Siedner, 2016). As a result, coupled with the continued acquisition of HIV in later life, the population of older adults living with HIV (OALH) is rapidly growing (Centers for Disease Control and Prevention [CDC], 2018). The commonly used convention for grouping older versus younger adults with HIV is a cutoff age of 50 years, largely due to the historical nature and onset of the HIV/AIDS epidemic (Blanco et al., 2012), as is the case in this article unless otherwise noted. The CDC (2018) reported that by the end of 2014, older adults accounted for an estimated 45% of Americans living with diagnosed HIV, adding that new cases of HIV among older adults are continuing to occur at a relatively high rate. As one example, older adults in the United States comprised approximately 17% of HIV diagnoses in 2015, with a markedly higher rate in those ages 50 to 54 years (i.e., 45% of the diagnoses among people age 50 years and over; CDC, 2018).
Despite significant advances in ART over the past few decades, OALH who are successfully treated still face several shared and unique biomedical, cognitive, social, behavioral, and psychological and neuropsychiatric consequences associated with HIV/AIDS. In consideration of the large and growing population of OALH, the goal of this article is to review key factors associated with contracting and living with HIV/AIDS in later life, and highlight interventions aimed at facilitating successful aging among OALH. First, risk factors for HIV infection, including those shared among both older and younger adults, as well as those more commonly observed in older adults, and interventions developed to reduce HIV-infection risk among OALH are reviewed. Next, several unique issues in long-term survivorship with HIV/AIDS among older adults are discussed, including stigma and its detrimental psychosocial consequences, substance use, multimorbidity and polypharmacy, neurocognitive function, neuropsychiatric disorders, syndromes, and symptoms, everyday functioning, and successful aging (e.g., hardiness and resilience). The article concludes with recommendations to help improve outcomes and increase successful aging among OALH, including the promotion of HIV/AIDS survivor response and community mobilization efforts and integrated models of care.
Risk Factors for Later-Life HIV/AIDS Infection
Shared Risk Factors Among Older and Younger Adults
Sexual Activity and Orientation and Injection Drug Use
Sexual activity is common among older adults, including OALH, with an estimate of over 50% of OALH describing themselves as sexually active (Golub et al., 2010). Both older and younger adults share many of the same risk factors for HIV infection, such as engaging in sexual activity with multiple partners and having limited knowledge about prevention of HIV (CDC, 2018). As is the case with younger adults, sexual orientation and injection drug use are associated with the risk of HIV infection in older adults. The CDC (2018) reported that in 2015, nearly half of all new HIV diagnoses were among gay and bisexual men, in contrast to 15% in heterosexual men and 23% in heterosexual women, with the remaining cases (12%) being associated with injection drug use. Additionally, among older adults in particular, the risk of HIV infection is especially high among gay and bisexual men and transgender individuals. Specifically, the frequency of engaging in an HIV risk behavior for older adults has been reported at 26% for gay men, 19% for bisexual men, and 20% for transgender older adults, in contrast to 4% for lesbians and 14% for bisexual women (Fredriksen-Goldsen et al., 2013).
Psychiatric Risk Factors
There are also shared psychiatric risk factors for HIV infection among older and younger adults, including behaviors associated with mania and psychotic disorders such as schizophrenia (e.g., increased drug use and/or riskier sexual activity and treatment nonadherence; Singer & Thames, 2016). However, there is strong evidence indicating that with increasing age, bipolar disorder becomes less prevalent (Gum, King-Kallimanis, & Kohn, 2009), and psychotic disorders are associated with lower levels of psychopathology (Lala & Sajatovic, 2012). Despite these reductions in illness severity and associated impairment, the increased risk for HIV infection among older adults with these kinds of psychiatric disorders and symptoms remains (Watkins & Treisman, 2012).
Unsafe Sex Practices
Additionally, although lack of condom use and other unsafe sex practices are often seen in both younger and older adults, they may be more likely among older adults (Cooperman, Arnsten, & Klein, 2007). A study that used U.S. population-based data indicated that about two-thirds of primarily self-identified heterosexual men and women over age 50 years reported no condom use in their most recent sexual encounter, irrespective of the situational circumstances such as known HIV or sexually transmitted infection status (Schick et al., 2010). Another study reported that 33–42% of OALH indicated that they had engaged in vaginal or anal sex without a condom (Golub et al., 2010). Similarly, Illa and colleagues (2008) conducted a study involving a sample of men and women age 45 years and older, recruited from an HIV primary care clinic, who reported having engaged in vaginal or anal sex within the past 6 months. They found that 20% of their participants reported inconsistent condom use, and 33% reported having multiple sex partners over the past 6 months.
Race/Ethnicity and Culture
A prominent shared demographic risk factor for HIV/AIDS across all ages that is more pronounced among older versus younger adults is race/ethnicity, indicating a significant and pervasive health disparity. Among older adults, African Americans have been shown to be at a significantly disproportionate risk of HIV infection, having accounted for 43% of all new HIV diagnoses in 2015. In contrast, non-Latino white older adults accounted for 36% of new diagnoses in 2015, and Latino older adults accounted for 17% (CDC, 2018). This racial/ethnic group disparity has also been demonstrated in another study examining HIV diagnosis rates that used CDC surveillance data from 2005 to 2008, conducted by Linley, Prejean, An, Chen, and Hall (2012). Results revealed significantly higher average annual rates (per 100,000 individuals) of HIV diagnosis among older African American (12.6) adults, followed by older Latino adults (5.0), as compared to non-Latino whites; these rates were more pronounced than among younger adults (African Americans: 7.7; Latinos: 2.9). Linley and colleagues posited that stigma, barriers to obtaining HIV testing, and reduced cognizance of HIV risk among older adults may be augmented by socioeconomic and cultural factors that lead to racial/ethnic disparities. Sayegh and Knight (2013) described several culturally influenced and socioeconomic variables that can contribute to delays in the decision to seek medical care, which include structural and systemic barriers to health care access; cultural perceptions of and beliefs about disease causes, susceptibility, and severity; shame and stigma; English-language proficiency; acculturation levels; and family-centered cultural values. Indeed, older adults tend to be diagnosed with HIV at a later stage in the disease process than their younger counterparts (CDC, 2018), and this disparity is more pronounced among older racial/ethnic minority adults (Linley et al., 2012).
Risk Factors More Common Among Older Versus Younger Adults
Some risk factors for HIV infection tend to be observed more frequently among older versus younger adults. For instance, many individuals have new sexual partners later in life because of divorce or separation as well as death, hospitalization, or other outside placement of their partners (Schick et al., 2010). In addition, individuals who lack concerns regarding pregnancy may be less likely to use a condom or otherwise engage in safe sex practices (CDC, 2018). One possible explanation for these low rates of condom use in older adults is that because of cohort differences related to sociocultural, historical, political, and other factors, older adults frequently perceive HIV as a risk for younger individuals and sexual minority groups, leading to an underestimation of their own susceptibility (Levy, Ory, & Crystal, 2003). In addition, in the previously mentioned Illa et al. (2008) study, negative mood and perceived HIV stigma were found to be related to reported inconsistent condom use.
Additional risk factors for HIV infection that tend to be unique to older versus younger adults include vaginal tissue dryness and thinning, resulting from the fragility of the mucosa often seen in postmenopausal women because of lower levels of estrogen (CDC, 2018). Among older men, the death of a spouse has been shown to significantly increase the risk of sexually transmitted infections such as HIV within the first year following the death, and even more so among men who utilize medications for erectile dysfunction (Smith & Christakis, 2009). Moreover, studies have reported that physicians frequently do not discuss sexual behavior with older patients compared to younger adult patients (Lindau et al., 2007) and are less likely to query them regarding their sexual history (Loeb et al., 2011), despite studies showing that older adults would be open to talking about sexual activity if the subject is initiated by their primary health care provider (Slinkard & Kazer, 2011). This may be due to perceptions of older adults as being at low risk for sexually transmitted diseases or because of feelings of uneasiness discussing sexual matters within this group (Pilowsky & Wu, 2015), but regardless, it places sexually active older adults at increased risk for HIV. Therefore, despite popular conception, older adults are often at higher risk of HIV infection than they or their health care providers perceive.
Intervention Efforts Aimed at HIV Prevention Among Older Adults
Unfortunately, there is a dearth of research focused on HIV prevention specifically among older adults (Illa et al., 2010), despite the fact that several HIV risk-reduction interventions have been shown to be effective among specific at-risk populations and middle-aged adults (Carey et al., 2010). One exception is a qualitative study involving individuals age 55 years and older, examining a brief self-efficacy–based group educational program in senior housing settings and its impact on knowledge of HIV risk and prevention measures (Gedin & Resnick, 2014). Findings provided support for this program’s feasibility in this setting, in that participants willingly attended sessions and frequently reported having learned a great deal of relevant information and appreciating the program. Outside of senior housing settings, one study reported that older adults tend to prefer receiving HIV education in community settings (Small, 2009).
Another study in the limited literature on HIV prevention in older adults focused on identifying sexually active older adults already diagnosed with HIV, as a means to prevent further transmission. Specifically, Illa et al. (2010) reported on the development and effectiveness of a secondary prevention intervention for OALH (i.e., age 45 years and older) that focused on information, motivation, behavioral skills, and AIDS risk-reduction behaviors. At 6 months, results indicated increased levels of HIV knowledge and significant reductions in unprotected sexual acts. Findings suggest that such prevention interventions can and should be developed, tested, and ultimately disseminated for OALH and older adults at risk for HIV, to help reduce the prevalence and burden of HIV/AIDS among this group.
Unique Issues in Long-Term Survivorship With HIV/AIDS Among Older Adults
Stigma and Its Detrimental Psychosocial Consequences
Although medication treatment for HIV/AIDS has advanced significantly and resulted in substantial progress in the lifespan and quality of life of all people living with HIV, several psychosocial and behavioral challenges remain, in particular among OALH. A highly influential factor in terms of psychosocial functioning among OALH is stigma. Although findings regarding age differences and HIV-related stigma have been inconsistent (Emlet, 2005, 2006a, 2006c, 2007; Foster & Gaskins, 2009), it is known that HIV stigma is commonly seen among OALH (Emlet, 2017) and is often associated with several negative behaviors and outcomes. For example, some studies have reported that stigma is associated with nondisclosure of HIV serostatus in OALH (Emlet, 2006a; Emlet, 2017), though when OALH do disclose their status, it is typically for reasons similar to those of younger and middle-aged adults, such as a need to share the information with others or help educate others (Emlet, 2008). Relatedly, stigma can contribute to delays in care seeking (Sayegh & Knight, 2013), which can result in poorer medical and mental health outcomes in the context of HIV/AIDS.
Additionally, stigma among OALH has been shown to result in social isolation and lower levels of perceived instrumental and emotional support (Emlet, 2017; Shippy & Karpiak, 2005), which limits their ability to glean the benefits that have been shown to be associated with social support in OALH, including alleviation of psychological distress and increased levels of psychological well-being and health functioning (Brennan-Ing, Seidel, & Karpiak, 2017). Indeed, there is a well-established relationship between living with HIV/AIDS in later life and having few and fragile social networks (High et al., 2012). For example, Emlet (2006b) conducted a study involving 45- to 60-minute structured interviews comparing OALH to younger people living with HIV (i.e., ages 20–39 years), and reported that nearly 40% of the older adults in their sample were at risk of social isolation, in contrast to 25% of their younger adult sample. Moreover, the older racial/ethnic minority individuals in their sample reported smaller social networks and had an increased risk of social isolation as compared to the older non-Latino white or younger adult participants. Conversely, participants who reported having a confidant and receiving instrumental support exhibited reductions in HIV stigma.
Older adults are already at increased risk of isolation and loneliness due to illness or loss of family and friends often seen in older age, and are also more likely to be retired or live alone (Emlet, 2006a, 2007), especially women in terms of living alone (Keigher, Stevens, & Plach, 2004), and stigma appears to further increase this risk. When examined in combination, increased loneliness and HIV-related stigma have been shown to explain a substantial proportion of the variance in depression among OALH (Grov, Golub, Parsons, Brennan, & Karpiak, 2010). Multivariate modeling explained 42% of the variance in depression, which was significantly related to increased HIV-associated stigma and loneliness, decreased levels of cognitive functioning and energy, and younger age. All of these findings call attention to the potential for beneficial downstream effects on HIV serostatus disclosure and care seeking, loneliness and social support, and mood, by aiming to reduce HIV-related stigma in OALH.
In terms of behavioral factors, similar to younger and middle-aged people living with HIV, among OALH, substance use has been shown to be common, though patterns of current substance use are not well understood (Rabkin, McElhiney, & Ferrando, 2004). However, one study found that reported substance use rates within the past month among OALH in the New York City area were 74.3% for alcohol, 45.2% for cocaine/crack, 41.8% for marijuana, 15.4% for opiates, 11.7% for other drugs (i.e., amphetamines, sedatives, PCP, and solvents), and 9.5% for poppers (Parsons, Starks, Millar, Boonrai, & Marcotte, 2014). Nonetheless, there is some indication that substance use may decrease following HIV diagnosis, and more so among older as compared to younger people living with HIV (Montoya et al., 2016). In one study involving a sample of primarily male and African American older veterans, substance use was found to be significantly more common among those with HIV compared to those without HIV (e.g., approximately 45% among OALH vs. 30% among HIV-uninfected older adults) and associated with higher rates of medical and mental health difficulties (Green et al., 2010). Such findings highlight the need for both screening and the development and implementation of age-appropriate interventions aimed at reducing or ceasing substance use, in particular among OALH.
Unfortunately, intervention research in this area is significantly lacking (Kuerbis & Sacco, 2013). Moreover, whereas intervention studies have been conducted among older adults outside of HIV populations and showed promising results, a review of studies on substance abuse treatments for older adults revealed a relative dearth of published, rigorous, internally valid research, much less among OALH (Kuerbis & Sacco, 2013). However, Kuerbis, Sacco, Blazer, and Moore (2014) indicated several substance use disorder interventions for which some initial support for their efficacy and effectiveness has been found among older adults, namely, brief interventions (e.g., using aspects of motivational interviewing and motivational enhancement therapy), medications (e.g., disulfiram, acamprosate, naltrexone, and varenicline), case and care management models, and psychotherapeutic and psychosocial interventions (e.g., cognitive behavioral therapy and supportive therapy models).
Multimorbidity and Polypharmacy
Despite the success of effective ART treatment in terms of increasing life expectancy among people living with HIV, many OALH consequently experience comorbid medical conditions and associated polypharmacy because of the effects of biological aging, as well as chronic HIV infection/co‑infections (e.g., immune activation), ART exposure, and behavioral risk factors (Brown & Guaraldi, 2017). Common comorbid medical conditions and associated prevalence estimates among OALH include hypertension (49.2–67.1%); hypercholesterolemia (47.5–65.8%); erectile dysfunction (20.5–25.9%); peripheral neuropathy (20.9–24.7%); hepatitis C (12.7–20.7%); reflux disease (19.6–20.5%); shingles/herpes zoster (16.4–16.9%; Vance, Mugavero, Willig, Raper, & Saag, 2011a); diabetes (17.8%); syndromic neurocognitive impairment (15.4%); chronic pulmonary disease (12.2%); and malignancy, including lymphoma and leukemia (8.9%; Rodriguez-Penney et al., 2013). Multimorbidity can result in poorer cognitive and functional outcomes (e.g., frailty), as well as polypharmacy (generally operationalized as taking five or more different medications daily), the latter of which can often have its own detrimental consequences on functioning in OALH (Brown & Guaraldi, 2017). For instance, polypharmacy has been found to be strongly associated with fall frequency among people ages 45–65 living with HIV, and is effectively treated with ART (Erlandson et al., 2012). Additionally, the risk of drug–drug interactions and adverse drug reactions increases alongside increases in polypharmacy, which may further exacerbate the detrimental effect of multimorbidity on negative health and functional outcomes (Brown & Guaraldi, 2017). As a result of the negative outcomes associated with multimorbidity and polypharmacy, Vance and colleagues (2011a) recommended that clinicians should become aware of common comorbid conditions among OALH, discuss medication adherence issues with patients, be aware of possible drug–drug interactions and adverse side effects, and emphasize health-promoting behaviors (e.g., diet, exercise, and sleep hygiene).
OALH are at a higher risk for neurocognitive dysfunction (R. C. Moore et al., 2014; Valcour et al., 2004), and although it remains unknown whether the effects of HIV and aging are additive or synergistic, there are several established mechanisms for such poorer cognitive outcomes in this population. For example, OALH are at a higher risk for psychosocial, psychiatric, inflammatory, and cardiometabolic comorbidities than their older HIV-negative counterparts, all of which confer a higher risk for neurocognitive impairment in OALH (High et al., 2012; Nasi et al., 2017). In OALH, another potential contributor to poorer neurocognitive function may be side effects of long-term use of ART, particularly older and potentially more toxic regimens that were used in the earliest days of the pandemic. However, controversy exists regarding the potential neurotoxicity of ART, including whether CNS penetration of individual ART regimens confers a positive or negative effect on cognitive function (Nightingale et al., 2014). As in younger people living with HIV, HIV disease severity, particularly how severely immunocompromised one was at any point in life (e.g., CD4 nadir), is associated with poorer neurocognitive functioning (Greene et al., 2015; Shikuma et al., 2012). Severity of past immunocompromise may be particularly relevant for OALH, as many were infected when treatments were less effective (or not available), and those who have been diagnosed with HIV later in life are at risk for more advanced disease because of delays in diagnosis and linkage to care in this group (Mugavero, Castellano, Edelman, & Hicks, 2007). Yet, there is evidence that other factors such as non-HIV biomarkers (Marquine et al., 2014) and cognitive reserve (Milanini et al., 2016) may predict cognitive functioning over and above disease severity, highlighting the complex and multidimensional influences on this outcome.
It has been suggested that the deleterious direct effects of HIV on the central nervous system are amplified by indirect processes (e.g., inflammation; Zayyad & Spudich, 2015). In the ART era, studies have shown neuropathological structural and functional changes associated with aging with HIV, indicating increased brain aging in OALH. These include smaller brain volumes and shape abnormalities, neuronal injury and loss, increased gliosis, white matter hyperintensities, and buildup of neurotoxic metabolites in HIV-infected individuals (Clifford et al., 2017; Cole et al., 2007; Kuhn et al., 2017). Although findings are mixed, traditional Alzheimer’s disease (AD) biomarkers (e.g., APOE e4 allele and beta-amyloid; Soontornniyomkij et al., 2012) have shown to be pronounced in HIV-positive compared to HIV-negative individuals, and further have shown associations with poorer cognitive outcomes in individuals aging with HIV (Wendelken et al., 2016). There is a need for gold-standard clinical, neuroimaging, and biomarker characterizations of HIV-associated neurocognitive disorders, which may aid in detecting such pathology before symptoms present. Furthermore, in people living with HIV, there is an ongoing need for research to differentiate cognitive dysfunction and underlying neuropathology that is due to premature aging and/or neurodegenerative disease, such as AD and its precursors (Milanini & Valcour, 2017).
HIV-Associated Neurocognitive Disorder
It is estimated that approximately 30–50% of people living with HIV present with some form of HIV-associated neurocognitive disorder (Heaton et al., 2010; Heaton et al., 2011). Briefly, per the most recent nosology (i.e., the 2007 Frascati criteria; Antinori et al., 2007), HIV-associated neurocognitive disorder consists of asymptomatic neurocognitive impairment, which includes subtle neurocognitive impairment; mild neurocognitive disorder, which includes the criteria for asymptomatic neurocognitive impairment plus mild interference with daily functioning; and finally HIV-associated dementia, which includes marked neurocognitive test impairment and daily impairment. Rates of HIV-associated neurocognitive disorders are indeed higher in OALH compared to younger people living with HIV; yet, whether these HIV and aging effects are synergistic or additive remains unclear (Pathai, Bajillan, Landay, & High, 2014; Sheppard et al., 2017). In other words, do neurocognitive disorders occur earlier than in age-matched controls (i.e., accelerated aging), or are these conditions more prevalent than in age-matched controls (i.e., accentuated aging; Pathai et al., 2014)?
In the era of ART, the cognitive profile of HIV-associated neurocognitive disorder in treated and virally suppressed patients may include deficits in psychomotor abilities, working memory and attention, executive functions, and learning (Sacktor et al., 2007; Woods, Moore, Weber, & Grant, 2009), and deficits in these domains predict incident neurocognitive disorder in OALH (Sheppard et al., 2015). This cognitive profile in OALH is in contrast to AD, which is characterized by rapid forgetting, problems with recognition memory, semantic difficulties, and visuospatial impairment (Weintraub, Wicklund, & Salmon, 2012). Although a debate exists as to whether the cognitive phenotype of HIV-associated neurocognitive disorder is subcortical or cortical (as in AD), much of the research suggests it is the former, as processing speed and executive impairments appear to be the hallmark domains affected (Reger, Welsh, Razani, Martin, & Boone, 2002), though there is evidence that both subcortical and cortical regions are affected (D. J. Moore et al., 2006). Furthermore, a debate regarding the operationalization of HIV-associated neurocognitive disorder remains, as several methods beyond the Frascati criteria have been suggested (Tierney et al., 2017). There is also an ongoing need for cognitive screeners in this population, as those that are currently available have demonstrated shortcomings in OALH (Fazeli et al., 2017). As the HIV population is reaching older ages, it is particularly important to differentiate HIV-associated neurocognitive disorder and mild cognitive impairment due to AD (and from AD itself), particularly in the earlier stages, in order to avoid delayed diagnosis of AD, which is clearly more progressive than HIV-associated neurocognitive disorder. The longitudinal trajectory of HIV-associated neurocognitive disorder is more variable, with the most common trajectory being stable mild impairment as well as a subset of individuals who improve (Heaton et al., 2015). In sum, people living with HIV may be increasingly vulnerable to mild cognitive impairment and AD (Sheppard et al., 2015); however, additional work is needed to disentangle the various possible contributors.
Approaches to Prevent or Limit Neurocognitive Decline
Although there are no accepted first-line cognitive interventions for this population, several studies suggest potential areas of intervention for neurocognitive impairment in adults aging with HIV. First, despite potential neurotoxicity of ART, it has been consistently reported that early detection and treatment of HIV is a means to avoid or delay significant cognitive impairment (D’Antoni et al., 2018; Pérez-Valero et al., 2018), which may be related to preventing significant immune compromise and the associated inflammation. In other words, the benefits of ART outweigh the risks of untreated HIV on many outcomes, including neurocognitive outcomes. Second, findings from several studies (either observational or intervention studies) suggest protective lifestyle factors may help prevent cognitive decline in this population. These include physical activity and other leisure activities (Fazeli et al., 2015; Krueger et al., 2017). Finally, several interventions directly target cognitive or everyday functioning, many of which been informed by the larger gerontological literature. These include restorative computerized cognitive remediation therapies (Vance, Fazeli, Ross, Wadley, & Ball, 2012; Vance et al., 2018) as well as compensatory metacognitive training interventions (Casaletto et al., 2016). These studies are all promising, but rigorous, randomized controlled trials in large samples are needed to examine efficacy as individuals age with HIV.
Neuropsychiatric Disorders, Syndromes, and Symptoms
Neuropsychiatric disorders, syndromes, and symptoms are sometimes seen in OALH. The most common symptoms include depression, anxiety, mania, apathy, irritability, and psychosis (Singer & Thames, 2016).
Depression and Anxiety
Depression and anxiety have been shown to be common in OALH, with some studies estimating a prevalence of 50% for depression and 20% for anxiety (Vance et al., 2011a). In particular, depression has been reported as the most common neuropsychiatric syndrome in people living with HIV (Watkins & Treisman, 2012), with prevalence rates being twice as high in this group compared to individuals who do not have HIV (National Institute of Mental Health [NIMH], 2016). Moreover, a positive association between stigma and low mood (e.g., depression) and anxiety has been documented in the literature (Grov et al., 2010). Higher depression levels have been shown to be a central factor contributing to reduced cognitive efficiency, mental health, productivity (Vance, McGuiness, Musgrove, Orel, & Fazeli, 2011b), and medical comorbidities (Watkins & Treisman, 2012) as well as smaller social networks and higher levels of loneliness, poorer treatment adherence (Grov et al., 2010), and lower levels of condom use and other safe sex practices (Illa et al., 2008). As previously noted, stigma may also prevent OALH from pursuing HIV-related care and disclosing their HIV status (Emlet, 2017), thereby possibly increasing HIV-transmission risk and poorer disease outcomes and progression. Taken together, these findings suggest that interventions aimed at improving depressed mood and reducing perceptions of HIV stigma may not only help increase consistent condom use and other safe sex practices among OALH but also improve disease-related outcomes and progression. Fortunately, a rich literature on evidence-based treatments for psychological and psychotropic treatment of mood and anxiety disorders exists (Gonçalves & Byrne, 2012; Hinkin, Castellon, Atkinson, & Goodkin, 2001; Knight, 2004; Pinquart & Duberstein, 2007; Qualls & Knight, 2007; Wetherell, Gatz, & Craske, 2003).
Apathy and Irritability
Increased apathy (Bryant et al., 2015; Singer & Thames, 2016) and irritability (Singer & Thames, 2016) have also been found to occur relatively frequently, including among OALH. Kamat and colleagues (2012) reported that HIV infection was associated with a significantly higher prevalence of clinically significant levels of apathy (42% vs. 19% in those without HIV). The increased prevalence is thought to be likely related to the frontal-subcortical dysfunction often seen in HIV disease (Cole et al., 2007).
Psychotic symptoms can also be seen among individuals with HIV, as these can occur as a result of the disease or place individuals at increased risk for HIV infection (Dolder, Patterson, & Jeste, 2004). Prevalence rates of psychotic symptoms among OALH range from 0.5–15%, depending on surveillance methodology (Grant & Atkinson, 2000), with new-onset symptoms, more common in the later stage of the disease process (Hinkin et al., 2001), being present in 2–15% of HIV patients of all ages (Rasaily & Laishram, 2016). Nonetheless, it is plausible to assume that the prevalence of psychotic symptoms may be decreasing with better overall HIV identification and treatment. In terms of treatment, atypical antipsychotic agents prescribed in low doses have been identified as most promising, despite some side effects (Dolder et al., 2004).
Bipolar Disorder and Mania
Increased rates of bipolar disorder and secondary mania have also been reported to occur more frequently in people living with HIV. One study involving a sample of adult HIV outpatients reported a prevalence of bipolar disorder among the HIV-infected patients of their sample (8.1%) that was nearly four times higher than in the general U.S. population (2.1%; de Sousa Gurgel et al., 2013). Bipolar disorder and mania can have important clinical implications such as negatively impacting medication adherence (D. J. Moore et al., 2012). The neurotoxic effects associated with HIV may be a key contributor to the development of at least some instances of secondary mania among people living with HIV, given that research has shown that ARTs that penetrate the central nervous system may serve to protect against mania (Ferrando & Nims, 2006). At the same time, behaviors often seen in individuals with mania, including higher levels of sexual activity, substance use, and engagement in riskier sex acts, place individuals at increased risk of HIV infection and transmission (Marengo et al., 2015). Aside from ART, other treatments that have been shown to be effective for secondary mania and bipolar disorder among people living with HIV include standard mood stabilizers, such as lithium, carbamazepine, and valproate (Pieper & Treisman, 2018), although lithium may not be tolerated well in later-stage HIV disease because of neurological side effects such as tremor and ataxia, as well as diarrhea and other potential contributors to dehydration (Hinkin et al., 2001).
While it is now known that neuropsychiatric changes are common in OALH (Hinkin et al., 2001; Singer & Thames, 2016), research is lacking to help determine whether the symptoms directly result from penetration of the virus into the central nervous system, are augmented by ART treatment, and/or co-occur with other enduring, inflammatory illnesses (Watkins & Treisman, 2012). Future research is needed, aimed at disentangling the likely multifactorial and interactive mechanisms contributing to neuropsychiatric disorders, syndromes, and symptoms in OALH, as well as targeted treatments.
Everyday functioning is a relatively easy concept from a lay perspective—it encompasses the things that people do in daily life. It is when one tries to assess everyday functioning that the construct becomes complex. Everyday functioning is most often assessed via self-report or caregiver/partner report. These methods are limited by the forthrightness of the person providing the report, and there may be strong motivation for both over- and underreporting. Self-appraisals of functional ability may have some importance (Blackstone et al., 2012); however, Thames et al. (2011a) linked overreporting of functional impairments to more severe depressive symptoms, and underreporting of impairments to less severe depressive symptoms. More objective assessments of daily functioning (e.g., performance-based measures of daily functioning) also have limitations in that the higher the reliability of an assessment, the less it relates to the complexities found in daily life (D. J. Moore, Palmer, Patterson, & Jeste, 2007). In addition, all of these assessments make assumptions about the behaviors that comprise a person’s daily activities, including both activities of daily living (e.g., grooming) and instrumental activities of daily living (e.g., cooking and driving), some of which may not be performed by all individuals for myriad reasons.
Despite issues with operationalization of everyday functioning, research has consistently shown that OALH may experience a disproportionate disruption in daily functioning relative to older adults without HIV, as well as younger people living with HIV (Thames et al., 2011b; Vance et al., 2011b; Vance, Fazeli, & Gakumo, 2013). As a result, improvement in daily functioning for those aging with HIV has been articulated as a priority for research based on recognized functional disability (U.S. Special Committee on Aging, 2013). Much of the research on everyday functioning has focused on how HIV-associated neurocognitive disorder drives daily functioning impairments (Thames et al., 2011b; Vance et al., 2013, 2011b), but other factors, such as mood disruption and mental health (R. C. Moore et al., 2017); substance use (Paolillo et al., 2018); food insecurity (Hessol et al., 2017); and sexism, homophobia, and transphobia (Logie, James, Tharao, & Loutfy, 2011), among others, likely affect daily functioning among OALH as well. To use depressive symptoms as a common example, untreated depression in people living with HIV has been associated with increased cognitive complaints and worse reported daily functioning compared to people living with HIV without depression (Cysique et al., 2016); and among OALH (i.e., ≥60 years), elevated depressed mood has been reported in 30–46% of individuals (Milanini et al., 2017). OALH often show superior ART adherence as compared to younger persons living with HIV (Sayegh et al., 2016); however, depressed mood is one of the strongest predictors of ART nonadherence (Shubber et al., 2016) and may confound ART adherence among depressed OALH. The sum of various factors may be exacerbated in OALH, who are often burdened to a higher degree with HIV-related medical and psychological factors in conjunction with aging-related problems (Grov et al., 2010).
Persons with the mildest form of HIV-associated neurocognitive disorder, asymptomatic neurocognitive impairment, are more likely to progress to the more severe forms of HIV-associated neurocognitive disorder as compared to persons who are neuropsychologically normal (Grant et al., 2014). Impairment in daily functioning is the main difference between a diagnosis of asymptomatic neurocognitive impairment and mild neurocognitive disorder; therefore, properly assessing daily functioning impairments is very important in the scope of HIV-associated neurocognitive disorder diagnoses. However, there is some evidence that HIV-associated neurocognitive disorder is not the only pathway to daily functioning difficulties among OALH. A fair number of neurocognitively normal OALH report declines in daily functioning, and many OALH who are neurocognitively impaired do not (Heaton et al., 2010). The lack of a one-to-one relationship between neurocognitive functioning and daily functioning may relate, again, to limitations of daily functioning assessment approaches and other factors, as indicated in the previous paragraph, that may be barriers to daily functioning among OALH.
Meanwhile, there is also a growing literature on facilitators of successful aging as well. These include active lifestyle factors such as physical activity (Fazeli et al., 2014; Oursler, Sorkin, Ryan, & Katzel, 2018); social activity (Paolillo et al., 2018); and positive psychological factors such as grit, optimism, and hardiness, or resilience (Moore et al., 2018), which may help people achieve optimal levels of daily functioning. Although the mechanisms are not entirely understood, these factors may directly have a positive effect on daily functioning, or there may be indirect pathways whereby these factors buffer other negative outcomes in OALH (e.g., stress and stigma).
As it relates to specific daily functioning behaviors, it appears that OALH may have increased difficulties with driving, as assessed via driving simulators (Vance, Fazeli, Ball, Slater, & Ross, 2014); specifically, poorer visual speed of processing performance was related to poorer driving performance. On the other hand, OALH have been shown to have better ART medication adherence than younger people living with HIV (Sayegh et al., 2016). Further investigation into important daily behaviors, including those with important safety implications such as driving, is needed among OALH.
Successful Aging, Hardiness, and Resilience
Despite the negative outcomes associated with aging with HIV, which may be buffered by the results of successful community-based efforts and integrated, comprehensive care, numerous reports suggest that a subset of OALH may be aging successfully. Although studies differ in definitions of successful aging, many agree that the absence of cognitive, everyday, and emotional impairment ( Moore et al., 2018, 2014) may provide a useful and multidimensional phenotype of successful aging. Positive psychological processes such as hardiness, or resilience, are key contributing factors to successfully aging with HIV/AIDS (Vance, Struzick, & Masten, 2008). Hardiness is associated with the directing of resources toward promoting well-being and utilization of problem-focused coping strategies that alleviate distress and increase beneficial quality-of-life outcomes (Roger, Mignone, & Kirkland, 2013). Vance and colleagues (2008) indicated that prior studies have reported that adults with high levels of hardiness demonstrate stronger immune functioning and are able to develop methods to improve their life satisfaction while living with HIV. Additionally, Fang and colleagues (2015) reported that resilience mediated the relationship between life stress and physical, emotional, functional and global well-being among OALH. These findings highlight the importance of promoting behaviors associated with successful aging, such as actively engaging with life, adopting behaviors that promote health, practicing spirituality (Roger et al., 2013), and building self-acceptance and optimism (Emlet, Tozay, & Raveis, 2011).
Although studies on successful aging among OALH are promising, they do not necessarily ascertain the mechanisms whereby some individuals avoid negative outcomes and some develop them. Moreover, OALH may still be experiencing lower rates of successful aging than HIV-negative counterparts, with studies reporting rates of successful aging ranging from approximately 19%–32% in HIV-positive individuals and approximately 33%–61% in HIV-negative controls (Malaspina et al., 2011; Moore et al., 2018, 2014). While these ranges reflect differences in study samples as well as successful aging operationalizations, they nonetheless highlight disparities in these outcomes for OALH and warrant future work using consistent consensus definitions. Further, future intervention research is needed targeting individual facets of successful aging in OALH to narrow this gap and to promote successful aging. For example, there may be approaches to directly or indirectly intervene upon cognitive and daily functioning as well as mental health and psychosocial functioning. Investigations will benefit from capitalizing on the lifespan perspective to understand the efficacy and durability of such interventions. Furthermore, as OALH are now reaching older ages more than ever before (i.e., reaching the oldest old), it is both possible and paramount to determine ways to improve functioning and well-being in this underserved population.
Conclusion and Recommendations
Taken together, it is evident that there is an emerging need for research to better understand HIV prevention as well as how to promote successful aging outcomes among OALH. There are numerous factors that heighten the risk for HIV infection among older adults, as well as many negative outcomes associated with aging with HIV. There is also considerable overlap in such factors. For example, stigma, depression, and substance abuse can increase the likelihood that a person contracts HIV, but these can also be negative outcomes after becoming infected with and aging with HIV. Similarly, significant racial/ethnic disparities exist in both infection rates and occurrence of negative outcomes in aging with HIV.
HIV/AIDS Survivor Response and Community Mobilization Efforts
Sharp (2016) noted that as a result of these detrimental consequences associated with aging with HIV, many of which were unintended and unanticipated (e.g., trauma and resulting difficulties with addiction and other mental health and psychosocial difficulties), a strong HIV survivor response and community mobilization efforts have developed to address the needs of long-term survivors of HIV/AIDS. As a leading example of the powerful effects of survivor mobilization, drive, and advocacy in terms of helping to address the often-unmet needs of OALH, Sharp described the San Francisco, California, city government’s Department of Aging and Adult Services subcommittee for older adults, called the Long-Term Care Coordinating Committee. This workgroup conducted a citywide HIV and aging needs assessment, resulting in several HIV-survivor policy recommendations for which a recommended budget had been approved, including mental health and psychosocial services; medical and nonmedical training for geriatricians and HIV providers; support for transgender inclusion in the health care system; increased and sustained linkage to care; affordable housing; food security; and legal, financial, and employment services. As a result of the success of such efforts, similar HIV-survivor advocacy and mobilization efforts and services have been spreading nationwide, highlighting the importance and effectiveness of such continued community-based efforts that can help increase rates of successful aging among OALH.
Integrated Models of Care
Additionally, given the high levels of comorbid physical, emotional, and/or behavioral health problems in OALH, tailored integrated care models should continue to be developed, investigated, and implemented to help optimize overall care and functioning. Sangarlangkarn, Avihingsanon, and Appelbaum (2017) discussed how several geriatric principles can be used to improve care for OALH, including an emphasis on patient-centered care (e.g., care preferences and quality of life), coordinated care, multidisciplinary teams, and psychosocial determinants that can affect care planning (e.g., living arrangements and religion/spirituality). Similarly, Cox and Brennan-Ing (2017) highlighted the need for supportive services and referrals aside from medical care for OALH, including case management; substance use and mental health treatment; support groups; and transportation, housing, legal, and emergency assistance. Integrated models of care are also key in helping to ensure successful aging among OALH.
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