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Handbook of Social Work in Health and Aging$

Barbara Berkman and Sarah D'Ambruoso

Print publication date: 2006

Print ISBN-13: 9780195173727

Published to Oxford Scholarship Online: April 2010

DOI: 10.1093/acprof:oso/9780195173727.001.0001

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HIV-Infected and HIV-Affected Older Adults

HIV-Infected and HIV-Affected Older Adults

Chapter:
(p.91) 8 HIV-Infected and HIV-Affected Older Adults
Source:
Handbook of Social Work in Health and Aging
Author(s):

Cynthia Poindexter

Charles Emlet

Publisher:
Oxford University Press
DOI:10.1093/acprof:oso/9780195173727.003.0008

Abstract and Keywords

This chapter presents an overview of social work practice implications that can arise when the experience of HIV and aging intersect. It is important to consider HIV and aging together for two reasons. First, medical and/or social service practitioners still frequently fail to identify and serve HIV-infected midlife and older adults; thus, HIV-infected persons over the age of 50 often remain hidden and their needs unaddressed. Second, the caregivers of HIV-infected younger adults or children with HIV are often mid-life and older persons, who may be grieving, unprepared, unsupported, hidden, and frail. While there is no certainty regarding the number of HIV-positive adults being cared for by older adults, it has been estimated that half of the persons with AIDS are being cared for by older relatives.

Keywords:   HIV, aging, elderly, social work practice, caregivers, HIV-infected older adults

This chapter presents an overview of social work practice implications that can arise when the experience of HIV1 and aging intersect. It is important to consider HIV and aging together for two reasons. First, medical and/or social service practitioners still frequently fail to identify and serve HIV-infected midlife and older adults; thus, HIV-infected persons over the age of 50 often remain hidden and their needs unaddressed. Second, the caregivers of HIV-infected younger adults or children with HIV are often midlife and older persons, who may be grieving, unprepared, unsupported, hidden, and frail. While there is no certainty regarding the number of HIV-positive adults being cared for by older adults, it has been estimated that half of the persons with AIDS are being cared for by older relatives (Allers, 1990; Joslin, 1995).

HIV-related advocacy, service provision, and policy analysis are highly compatible with social work because the profession is focused on forming productive partnerships with disenfranchised, oppressed, and marginalized individuals, couples, families, and groups (Shernoff, 1990). However, examining and addressing the intersection of HIV and aging has not been a strength of social work. HIV service systems have tended to underserve midlife and older persons, and social service workers in the HIV field need to know more about and attend to aging-related issues. At the same time, local service systems for older Americans have rarely sought out older persons with HIV, and gerontological social workers sometimes seem to be uncomfortable or unknowledgeable about HIV disease (Emlet, 1996, 1997; Emlet & Poindexter, 2004).

However, after initially neglecting this population, both HIV and aging researchers and advocates are more recently attending to the special needs of HIV-infected and HIV-affected midlife and older persons (Zablotsky & Kennedy, 2004). The task at hand is to distribute this knowledge and awareness to social work practitioners in both micro and macro practice, no matter their setting or specialty. (For a discussion of service delivery specific to these populations, see Emlet and Poindexter, this volume).

Midlife and Older Persons with HIV

When HIV was first identified, it was typically considered a young person’s disease. However, from the beginning of the pandemic, the Centers for Disease Control (CDC, 1998) were documenting that 10% to 12% of the persons with AIDS were over age 50.2 By 1998, there was a greater increase in the incidence of (p.92) AIDS in adults over 50 than among young adults. By 2001, 11% of all persons in the United States diagnosed with AIDS were over age 50 (CDC, 2002). Mack and Ory (2003) recently reported that 18.9% of persons living with AIDS were 50 years of age or older. As is the case in all age groups, females, Blacks, and Latinos are overrepresented in midlife and older persons with HIV (CDC, 2003). As people are now living longer with HIV due to more effective and accessible medical and pharmaceutical treatments, the numbers of older people with HIV are increasing. At the end of 2001, 1.4% of all reported cases of AIDS were in persons 65 and older (CDC, 2003). At the end of 2002, nearly 2% of all persons living with AIDS in the United States were 65 years and older (CDC, 2003). Advances in treatments have improved longevity for persons with HIV, thus increasing the likelihood that persons diagnosed in late life will live into older age. These individuals, like older adults in the general population, will face a myriad of issues, including concurrent medical conditions and chronic illnesses, decreasing social networks, and increased risk of needing care.

Persons who are living with HIV disease tend to face some of the same emotional and interpersonal concerns, regardless of their demographic characteristics (Poindexter, 2000). Older persons face exactly the same issues as younger persons, with the added strain of physical, familial, and existential concerns that arrive with middle and older age (Lavick, 1994). Older people who have HIV tend to be isolated and afraid to disclose their diagnosis to family members and friends and may be even more reluctant than are younger persons to seek social services and mental health support (Emlet, 1997). Older HIV-positive persons are more likely to live alone than their younger counterparts (Crystal & Sambamoorthi, 1998; Emlet & Farkas, 2002); therefore, it is important to recognize that decreased social support can be a complicating and serious issue.

Midlife and Older HIV-Affected Caregivers

It is common for older family members to serve as caregivers for their adult children and/or their grandchildren living with HIV (Joslin, Mevi-Triano, & Berman, 1997). When children (whether HIV-negative or -positive) are orphaned by HIV, their care often falls to grandparents or great-grandparents (Levine, 1993). Older adults with HIV are frequently cared for by friends, partners, or parents who are also old. Older gay men are especially likely to serve as caregivers to friends or partners with symptomatic HIV (Grossman, 1995). The lived experienced of HIV-affected midlife and older caregivers has been inadequately explored by researchers (Brabant, 1994) and by service providers and advocates in both the aging and the HIV fields (Linsk, 1994); social service practitioners should better understand and address the needs of this population (Mellins & Ehrhardt, 1994).

Midlife and older caregivers are often providing HIV care as they are struggling with difficult family dynamics, grieving deaths or illnesses, becoming socially isolated, lacking information about HIV, fearing the effects of HIV stigma, managing their own physical or emotional difficulties, and feeling unequipped to be involved in caregiving or child rearing at this stage of their lives. Often out of necessity, they tend to neglect their own health and become more vulnerable to burnout or illness. Older people who lose their adult children to HIV are robbed of the informal caregivers on whom they would have been able to count when they are ill or dying (Emlet, 1996; MacLean & Clapp, 2001; Poindexter, 2001).

(p.93) Specific Concerns and Responses

It is almost impossible to generalize about the experiences, feelings, and concerns of HIV-infected and HIV-affected midlife and older persons, because both aging and HIV cause different reactions in each human body, individual personality, and family unit. However, there are certain emotional and social realities that are common for many persons given the nature of HIV. In this section, we discuss several of these commonalities and suggest basic social work considerations. The issues are living with a chronic and dangerous disease; dealing with increased crises, grief, and stress; managing HIV stigma and disclosure; making decisions about safer behavior; and deriving spiritual meaning from their struggles.

Disease Management

AIDS is a collection of cancers, opportunistic infections, and symptoms related to a suppressed immune system. AIDS is so variable that there is no normal illness trajectory. Not only is HIV disease frightening and unpredictable, but the medication protocols are quite complex and often lead to debilitating side effects. Persons with HIV must work hard to adhere to complicated regimens, monitor and medicate side effects, and manage health and stress through nutrition, exercise, and complementary therapies. Older persons living with HIV tend more than younger people to report other ongoing medical difficulties and limitations in physical functioning (Nokes et al., 2000). An older person with HIV as well as other aging-related chronic illnesses may have to juggle many complex medication protocols that may result in confusion about which cognitive or physical symptoms are caused by which conditions (Linsk, 1997). As a 51-year-old woman living with HIV recently asked, “Is it HIV or A-G-E? That’s my question all the time” (Cafazzo, 2004, D4).

Midlife and older caregivers are often heavily involved in the monitoring and maintenance of the infected person’s health status. Often, these caregivers are struggling with reading labels, managing schedules, learning about drug and food interactions, watching for side effects, and supporting infected persons in taking medications that may make them feel sick. If a caregiver is taking care of more than one person with HIV, such as a daughter and grandchildren, the management of HIV, infections, medication, and side effects becomes a full-time job.

HIV-positive persons tend to be able to adhere to their complex medication protocols better when they have professional support to do so, such as good case management or social workers and involved medical professionals. (Powell-Cope et al., 1998). Social workers should be familiar with the importance of medical and pharmaceutical adherence and should work in partnership with older persons with HIV and older caregivers to maximize housing stability, respectful medical care, culturally competent services, and accepting social support (Ka’opua, 2001; Linsk & Bonk, 2000).

Crises, Grief, and Heightened Stress

Because HIV disease has a wildly uncertain trajectory, it can lead to a physical and emotional roller coaster, a life filled with episodes of crisis (Poindexter, 1997). Even in a stable life, HIV can wreak havoc. For those who are in a marginal financial position, are underin-sured, have immigrant status, abuse substances, and/or have mental health concerns, HIV can be overwhelming. People who receive an HIV diagnosis usually enter into a world characterized by fear, regret, panic, sadness, anxiety, isolation, existential despair, hopelessness, and helplessness. It is inescapable that difficult decisions lie ahead, that illnesses, disability, and dying are likely (Dworkin & Pincu, 1993; Forstein, 1994; Jue, 1994). Existing data suggest that mental health issues may be a prominent problem for older adults living with HIV. Heckman and colleagues (2002) found in a study of 83 older HIV-infected adults that 25% suffered from moderate or severe depression as determined by the Beck Depression Inventory Scores. Emlet (2005) reported that 36% of study respondents had CES-D scores above the clinical cut-off for depression.

Midlife and older caregivers can experience much stress as they work to balance complex medical, financial, emotional, physical, and logistical needs. Their own emotional, financial, and physical stability can be at risk (Leblanc, London, & Aneshensel, 1997; Wardlaw, 1994). Many older persons are overburdened with multiple care responsibilities. Caregivers also experience sorrow as they witness the struggles and deterioration of the person with HIV. They feel the loss of their old relationship with the sick person and the HIV-positive person’s functioning, health, dreams, and future (Jankowski, Videka-Sherman, & Laquidara-Dickinson, 1996). In addition, many HIV-affected families have experienced or are anticipating (p.94) multiple deaths, which increases grief (Wardlaw, 1994).

Social workers should be observant for serial and serious HIV-related crises in the lives of those they serve and respond with immediacy, creativity, sensitivity, and flexibility when someone is especially troubled. In a crisis, HIV-affected or infected elders may not be best served by having to wait for an appointment or being limited to a formal visit in an office. The social worker may need to adjust hours, settings, or timeframes to respond to someone in a crisis, such as visiting someone in a hospital during the evening. In addition, depression and anxiety may be problems for elders who are HIV-infected or HIV-affected, so social workers may work with medical and mental health professionals on comprehensive assessments, differential diagnoses, and appropriate social and pharmaceutical interventions to support the person. Sadness is not the same as depression; social workers should incorporate that differentiation into their assessments and interventions, offering bereavement counseling and support groups if appropriate rather than immediately assuming pathology and referring to psychiatrists.

Concern With Stigma

HIV is probably the most intensely stigmatized physical condition (Crawford, 1996). Although HIV stigma has decreased in the United States over the course of the pandemic, it is still an impediment to disclosure and requests for support or services (Herek & Capitanio, 1993; Powell-Cope & Brown, 1992). HIV stigma can hold persons with HIV and their loved ones hostage behind a wall of silence and social isolation, hiding their experiences, needs, emotions, and health status (Crandall & Coleman, 1992; Laryea & Gien, 1993). Feelings of isolation and depression may result from the fact that social networks tend to shrink for HIV-infected (Shippy & Karpiak, 2005) and HIV-affected midlife and older adults (Poindexter & Linsk, 1999) because of stigma and fear of disclosure. Older caregivers may feel associative stigma acutely; a disclosure of HIV infection may trigger a disclosure of sexual activity, sexual orientation, or drug use, which can cause feelings of judgment or shame (McKinlay, Skinner, Riley, & Zablotsky, 1993).

HIV stigma may be the cause of persons not seeking, delaying, or refusing social services and information. Midlife and older persons who are living with HIV and/or caring for someone with HIV are highly sensitized to the threat of ostracism, judgment, and censure and will carefully manage disclosure of diagnosis and help seeking as a result (Poindexter, 2002; Poindexter & Linsk, 1999; Solomon, 1996). Emlet (2003) found in a sample of 88 individuals with HIV/AIDS that 51% of the older adults in the sample stated they felt ashamed of their illness sometimes or often, and 46% felt people were uncomfortable being with them. Thus, they may seek services, information, and medical care outside of their home neighborhood or town out of this concern for protecting privacy.

A social worker cannot work with HIV-infected or HIV-affected midlife and older persons without being constantly aware of the context of virulent stigma. When an older person discloses that he or she is dealing with HIV, that person is honoring and trusting you. A practitioner may need to repeatedly assure the person of confidentiality measures, normalize concerns about information management, and help with problem solving about disclosure decisions.

Need for Safe Behavior Assessment and Education

Because of deeply ingrained ageist attitudes and misinformation, social service and health care providers are often blind to the possibility that an older person is at risk for or has HIV or even wants information about transmission and safety. Stereotypes about older persons include that they do not inject drugs, have sex with opposite- or same-gender partners, or employ sex workers. Gott (2001) found that 80% of persons over age 50 surveyed at a genital-urinary clinic in the UK were at possible risk of contracting HIV, and 25% reported that they desired more information on HIV and sexually transmitted diseases than they had been offered.

While conducting assessments and throughout the case management or counseling relationship, social workers should strive to forge a climate conducive to discussing health concerns, including HIV status and risk. The practitioner should periodically ask if the service recipient has any concerns about safe sex or drug behavior, and be prepared with answers to questions. Older persons who are taking care of children or grandchildren with HIV may be uninformed about how the retrovirus is and is not transmitted, and social workers should be prepared to teach them. If professionals treat condom use and syringe cleaning as taboo subjects, where can service consumers turn for this life-saving information?

(p.95) Concern for Relationships and Communication

Knowing that you or a loved one has HIV throws you into a complex, frightening communication arena. An HIV-infected or HIV-affected older person will likely have to decide when and to whom to disclose the diagnosis, decide whether and from whom to ask for help, learn to be appropriately assertive with health care providers and case managers, negotiate with loved ones around caregiving boundaries, and learn about HIV transmission and safety.

Social workers can help older persons practice approaching others about painful topics and being assertive with physicians, caregivers, and sexual partners, perhaps using various forms of rehearsal or coaching. Older persons may need assistance with decision making about HIV disclosure as well; in this case, social workers can review family history and behavior regarding difficult disclosures to facilitate realistic problem solving and putting safeguards and supports into place.

Spiritual Concerns

HIV brings myriad challenges, but the literature is also very clear that HIV-infected and HIV-affected caregivers frequently take the opportunity to forge better relationships, increased spirituality and meaning, and personal growth in the wake of their crises (Ayres, 2000; Jankowski et al., 1996; Wardlaw, 1994). Social workers in the HIV field have consistently marveled at the level of resilience, fortitude, and strength they find in HIV-infected and HIV-affected persons. Although HIV-infected and -affected older persons are at times quite vulnerable and fragile, practitioners are often surprised by their energy, optimism, hope, ability to laugh and love, and adaptation. Social workers should do everything possible to support these positive outlooks, not labeling the fortitude and optimism as denial or resistance.

In contrast, older persons often report that because of HIV stigma and judgment about infection routes, they feel unable to turn to formal religious organizations for comfort regarding their HIV challenges and losses (Poindexter, Linsk, & Warner, 1999). Social workers may need to help older persons find more accepting faith communities or clergy when their clients desire spiritual community or pastoral counseling.

General Practice Implications

In addition to the social work responses to the concerns discussed above, the following general practice considerations may help in designing services for HIV-infected and HIV-affected midlife and older persons.

Offering Specific Outreach and Services

Ageism interacts with HIV stigma to render HIV-infected and HIV-affected midlife and older persons invisible and neglected. Older people can feel out of place in AIDS service organizations, which they perceive to be geared to younger people, and in the aging network, which has historically been unwelcoming to persons with HIV. Although specialized AIDS service organizations are vital, it is also important that HIV be mainstreamed into every social service agency so that older persons with HIV concerns are not marginalized. No matter the organization in which or level at which they work, social workers can help improve access to information, services, benefits, and social networks for older persons with HIV concerns.

Practitioners in the aging network, hospitals and clinics, and AIDS service organizations should strive to identify older persons with HIV concerns so that they can be steered to HIV education, relevant support groups, benefits advocacy, legal services, individual and group counseling, and case management. AIDS service organizations should not just wait for older persons to arrive at their doorsteps, but rather should develop and advertise programs with this population in mind, train workers in aging concerns, strive to make agencies more welcoming to older persons, and form interagency partnerships with aging network organizations. Likewise, gerontological social workers should ask older people, in a way that is nonjudgmental and normalizing, if they have any HIV-related concerns they wish to discuss, make sure that staff are adequately trained regarding HIV, and reach out to AIDS service organizations to make sure that case management programs are intersecting successfully for this population.

Inviting Individual Participation

In addition to formulating systemic ways in which to serve older persons with HIV concerns, social workers in individual practice must gently open the door (p.96) so that older persons can discuss their sexual and drug histories, HIV status, and caregiving realities. It helps to ask people about their knowledge and experience with HIV as a matter of course, just as you would approach any other health concern. Gerontological social workers can begin by identifying those service applicants and recipients who have HIV concerns. Practitioners in the aging network can offer educational programs about HIV and the number of older persons infected and affected, and offer support groups geared specifically to midlife and older men and women with HIV or to grandparents caring for AIDS orphans. HIV practitioners can ask HIV-positive persons about their networks and thus identify midlife and older persons’ caregivers who may need information and support.

Assessment

A social worker who is working with an HIV-affected or HIV-infected midlife or older person should first acknowledge the intense struggle inherent in the situation and create a safe and confidential working contract. It is then necessary to conduct a mutual, comprehensive, culturally competent, and HIV-knowledgeable assessment, including both assets and needs. Assessments should include HIV as well as aging concerns. Emlet, Gusz, and Dumont (2002) have suggested eight domains that should be included in the assessment process: physical functioning, cognitive issues, social support, sexual and drug health, spirituality, immune function, disclosure, and care-giver well-being. Additional discussion of each domain in provided in Table 8.1.

Services

Depending on the HIV-positive older person’s perceptions of his or her needs, the social worker can offer information on HIV transmission, safety, patho-genesis, treatment, and adherence; care management, crisis intervention, and referrals; supportive individual, dyadic, family, or group counseling; legal services; concrete services and logistical help; and benefits advocacy. HIV-affected midlife and older caregivers may require competent child care, respite services, home health and hospice, homemaker or chore services, transportation, individual or group supportive counseling, education about HIV transmission and safety, and financial assistance. Supportive counseling for HIV-infected or HIV-affected midlife and older persons can be for an individual, couple, family, or group and can take place in person or over the telephone. Nokes, Chew, and Altman (2003) report on time-limited psychoeducational support groups for HIV-infected persons over age 50 that occurred weekly over the telephone through conference calling. They found that it worked well for persons who were not too hearing-impaired or cognitively impaired to participate fully found the support group helpful. A similar model would work well for older HIV-affected caregivers who cannot leave children or ill adults at home.

Summary

When working with HIV-infected and HIV-affected midlife and older persons, social workers will likely need to be creative and flexible. For example, regardless of the organization’s norms, it might be necessary to incorporate home visits for all stages of helping: assessment, arranging for services, ongoing case management, benefits advocacy, legal and estate planning, and supportive counseling. Although a good social worker treats everyone with respect and honors all individuals’ experience, dignity, privacy, and right to choose, this may be doubly important when in a helping relationship with an older person with HIV. HIVpositive persons, as well as older persons, often do not fare well in the vast machinery of human service and health care provision. Social workers must monitor (p.97) their own attitudes and behaviors for ageism and HIV stigma, along with other prejudgments, so that the helping relationship does not become yet another place where people suffer from maltreatment and misunderstanding.

Table 8.1. Assessment Domains for Specific and Combined Populations

Domain

Older Adults

Persons Living With HIV/AIDS

Older Persons With HIV/AIDS

Physical Functioning

Comorbidity may result in decline in functioning from various sources. Functioning may decline more rapidly and more sporadically with HIV disease than with chronic diseases typically associated with aging.

Cognitive/Affective

Cognitive decline in older adults may be due to a variety of factors, including dementias normally associated with aging in addition to HIV dementia. Initial symptoms of HIV-related cognitive decline may not be found using traditional mental status exams often used with older adults.

Social Support

Depending on their history, older adults with HIV/AIDS may have limited contact with biological family. Additionally, social supports common to younger persons with HIV, such as parents and even siblings, may be unavailable to older adults due to death or frailty of family members.

Sexual and Drug Health

Taking sexual and drug histories with older adults requires an understanding of cohort terminology and may require altering language typically used with younger clients. Ageist attitudes among professionals about sexuality and drug use must be recognized and avoided.

Spirituality

Older adults may need assistance with disclosing diagnosis to clergy or may need to locate spiritual resources that are HIV-sensitive. Individuals may have broken past ties with religious organizations that engaged in blaming behaviors.

Immune Function

Senescence of the immune system (aging process) may serve to accelerate the decline of CD4 t-cells that are diminished through HIV. Older adults will need to be educated about the importance of CD4 and viral load and may need to be assisted with regular and ongoing testing.

Disclosure

Determine to whom clients have disclosed their HIV status. This should include various family members, friends, health care providers, clergy, as well as individuals from the client's job (if working).

Caregiver Well-being

Caregivers of individuals with HIV may suffer from many of the same physical, emotional, financial, and social burdens as other caregivers. In addition, associative stigma may exist, depending on the disclosure of the care receiver's HIV status.

Notes

1. The human immunodeficiency virus (HIV) is an infectious retrovirus leading to an incurable life-threatening condition known as HIV disease or AIDS (Acquired Immune Deficiency Syndrome). Persons living with HIV are also called “HIV-positive” or “HIV-in-fected”; those who are significant to them are called “HIV-affected.” HIV diminishes and then destroys the human immune system so that the infected person is more susceptible to cancers and bacterial, viral, parasitic, fungal, and other opportunistic infections. Despite effective and promising pharmaceutical developments, HIV remains highly life-threatening, and to date there is no vaccine or cure.

2. When CDC began monitoring reported incidence and prevalence of AIDS in 1982, age was reported by the (p.98) following categories: under 25, 25 to 44, 44 to 49, and over 49. For that reason, “aging” in the HIV field was initially defined as over 50. CDC now includes HIV and AIDS reporting by these age groups: 45 to 54, 55 to 64, and 65-plus (CDC, 2003, p. 14).

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