How Are Older Adults Affected by HIVAIDS Psychosocial and Educational Issues

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How Are Older Adults Affected by HIV/AIDS?
Psychosocial and Educational Issues

• Nathan L. Linsk, Ph. D
• National Association on HIV Over Fifty
• Midwest AIDS Training and Education Center
• Jane Addams College of Social Work, University of
  Illinois at Chicago

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Ways Older Adults are Affected by HIV

• HIV at Risk Prevention and Education
• HIV Infected Living with HIV
• HIV Affected Friends and Family
• HIV Caregivers New Roles?

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How are Older Adults Affected by HIV?

• HIV at Risk Prevention and Education
• HIV Infected Living with HIV
• Infected younger and growing into the older years
• Newly diagnosed in older years
• Newly infected in older years

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How are Older Adults Affected by HIV?

• HIV Affected Friends and Family
• HIV Caregivers New Roles?

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Why Over Fifty?

• CDC originally kept data only this way (fact (or
  urban legend?)
• For HIV 50 has been the older population.
• upper 10-15 percent of the HIV population
• similar to the aging in the general population
  (12-15)

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Why Over Fifty?

• In their 50s people may at least begin to think
  and prepare for their older years
•   Age related changes, medications, vision, etc.
• Retirement planning
• Workplace discrimination
•  Some benefits begin at 50 (AARP, some OAA
  benefits)
• Does this mean 50 means old? Probably not!
  May be older but age is in the eyes of the
  individual (or the beholder!)
•  

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From a Hidden Minority to an Emerging Group

• Status of the Epidemic Involving Older People

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• What percentage of people with AIDS are diagnosed
  over age 50?
• What are the most frequent associated risk
  behaviors?
• How does it vary by gender and race?

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Current U.S. Statistics

• 10-15 of those diagnosed with AIDS in the U.S.
  today are over 50 15-20 in certain cities.
  This is one is seven of the cases
• 25 of people with AIDS in N.Y.C. age 50 or older
• CDC estimates more than 78,000 people age 50 or
  older with HIV in 2004
• 1/2 of older individuals with HIV infected for
  lt1year
• Source C. Creticos, 2005

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Factors Impacting HIV-Infection Rates for Over 50

• Lack of awareness among health-care providers
• Less testing
• Less counseling
• Lack of prevention messages
• Belief that HIV affects only the young
• No training in safer sex practices
• Newly single older adults need counseling
• Lack of prevention education targeting older
  adults
• Lack of awareness of HIV risk factors, including
  needle use

Source C. Creticos, 2005
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Other transmission risks increasingTransmission
Sources Percent of all Over Age 50
1999- now ????
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Failure to recognize HIV infection in the elderly

• Alternative diagnoses are entertained before HIV
  infection is considered
• CVD, Alzheimers Disease, bacterial/viral
  pneumonia, malnutrition, occult malignancy
• 16 37 increase in likelihood of dying within
  the month of HIV diagnosis

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HIV not recognized during life (Harlem Hospital
Study)

• 257 serum samples, age 60 who died within a
  one year interval, no Hx HIV
• 13 / 257 (5) HIV positive
• 6 male
• 7 female
• No death attributed to HIV infection

Arch Intern Med 1995 155(2) 184-6
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New Cases most recent year Available
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Chicago

• Dynamics
• Those in their late 40s age into the target
  population
• 300 new HIV and AIDS diagnoses per year (11 of
  all recent HIV diagnoses 02-03) in those 50
  and over
• 80-90 deaths per year
• Prevalence will continue to increase
• Prevention
• Care
• Source Chicago Department of Public Health,
  2005

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Chicago Recent HIV Infections (2002-2003) Age
groups by Race/Ethnicity
Source Chicago HIV/AIDS Reporting System (as of
12/27/2004)
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Chicago Average Annual HIV Rate (2002-2003) Age
Groups by Race/Ethnicity
Source Chicago HIV/AIDS Reporting System (as of
12/27/2004)
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Recent HIV Diagnoses (2002-2003), Chicago Age
Group by Sex
Note Over fifty represent about 11 of all
cases
Source Chicago HIV/AIDS Reporting System (as of
12/27/2004)
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Recent HIV Diagnoses (2002-2003), Chicago Age
Group by Sex by Mode of Transmission
Men aged 50 (n215)
Men aged 13-49 (n1572)
Source Chicago HIV/AIDS Reporting System (as of
12/27/2004)
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Recent HIV Infections (2002-2003), Chicago Age
Group by Sex by Mode of Transmission
Women aged 50 (n49)
Women aged 13-49 (n551)
Source Chicago HIV/AIDS Reporting System (as of
12/27/2004)
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ILLINOIS Percent Diagnosed HIV vs AIDS Over 50

• Of 222 persons over 50 diagnosed with AIDS in
  2003, 107 were diagnosed simultaneously with HIV
  (i.e., never previously reported).
• This is 47 of the new cases of AIDS for 2003.
• This is only 1 higher than the ages of 20-49
  that had a 47 new case incidence for 2003.
• SOURCE IDPH HIV/AIDS Surveillance Unit

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Epidemiological Facts

• Older adults represent a significant percentage
  of AIDS cases 1 in 7 new cases in some areas
• Main risk behavior is older men having sex with
  men (but difficult to get current data!)
• Other transmission risks have increased
• Heterosex
• Injection Drug Use
• No identified Risk

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Epidemiological Facts

• Transfusion risk has declined, but is still
  higher than other age groups
• Women are particularly vulnerable in the later
  years.
• The racial distribution parallels the epidemic
  Blacks and Hispanics disproportionately
  represented

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Psychosocial Issues for the Older Adults Living
With HIV

• Transitions
• Addressing stigma and fear
• Social support
• Elder as Caregiver
• Note issues not unique to over fifty adults!

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HIV Over Fifty Study (Linsk)

• Qualitative interviews with 15 PLWHIVs around the
  US, age 51-72
• 13 males, 2 females
• 11 white, 2 Hispanic, 2 African American
• Transmission 4 transfusion, 6-10 male to male
  sex, 2 heterosexual tranmission, 2-3 unknown
• Explored
• How do HIV 50 people deal with HIV?
• How to HIV50 people deal with growing older?
• What are their preferences for services?

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HIV in Middle Aged and Older Adults Mental
Health and Social Issues (Nichols, et al)

• Mixed method interviews with with 172 people
  living with HIV age 45 and older in Florida
• 22 female 44 African American, 8 Hispanic
  62 below poverty line
• Transmission
• 20 of Af Am (9 of whites) opposite sex partner
  transmission
• 29 of Af Am (8 of whites) needle sharing
• 44 of whites (4 of Af. Am) same sex partner
  transmission
• 14 of Af Am (4 of whites) prostitute
• 23 whites (16 Af. Am) stranger

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Psychosocial Issues for the Older Adults Living
With HIV

• Transitions

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Cohort Issues History

• Cohort/generational effects
• How is life experience for over 50s different
  from younger adults with HIV?
• Within group variation
• Formative experiences depression, world wars,
  fifties, sixties??
• Generational experiences Tuskegee? Civil rights?
  Gay rights? Space race?
• From the closet to silencedeath

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Cohort Effects HIV experience

• All of these people grew up and established their
  lives before HIV was known
• Prevention was largely unknown
• Experienced the
• discovery of the epidemic
• the experience of devastation upon various
  communities
• May have lost friends and families, entire social
  networks
• Some have been activists or have been very
  closeted r

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Falling Through the Cracks

• Ageism
• AIDSism

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Changing Roles

• Im not old, Im HIV versus It doesnt really
  change my life much Im old anyway!
• Whats HIV? Whats Aging? Separating the effects
  of
• "normal aging
• unique concerns related to age
• the experiences living with HIV

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Extended Life With HIV

• Younger people maturing into old age living with
  HIV
• Long-term survivors
• Denial e.g. I dont have AIDS, Im HIV and who
  knows what that means?

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Extended Life With HIV

• What might it mean psychosocially to live 30
  years with HIV?
• Prevention for positives issues
• Feelings of long life with a complex, infectious
  diseases
• Survival fatigue, depression

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Differences Older and Younger with HIV

• Less life lost
• Age appropriate declines and changes
• Disclosure I cant tell
• Younger PWHIVs either. . .
• dont want me around
• see me as role model

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Poverty and Income Changes

• HIV/AIDS and aging may each compound the economic
  losses of aging
• Racial differences white versus African
  Americans (Speer, et al.)
• Annual income for African Americans half that of
  whites
• 68 of AA and 61 of whites reported marked
  decrease in income since diagnosis
• Financial conditions would have been better
  without HIV in lives (e.g. Nichols et al.)
• Not having enough money to live on
• Give up work earlier due to HIV

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Psychosocial Issues for the Older Adults Living
With HIV

• Addressing Stigma and Fear

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Fear of . . .

• Illness
• Physical debilitation, losses, limitations
• Mental deterioration
• End of life suffering
• Rejection of support systems due to HIV
• Others??

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Self Stigma

• HIV diminishes me
• I wont tell anyone to avoid stigma,
  embarrassment, humiliation
• Compounded for older adults due to less
  information and misunderstandings about HIV risk
  in elders
• Stigma threatens ego strength and self image, and
  the person may respond fatalistically, withdraw
  from support systems (Worth, 1990)

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Stigma and Families

• Concern that HIV may bring shame on the family
  (Nichols, et al., in press)
• Telling part of the story
• Example caregivers may indicate they are caring
  for someone with cancer
• Work of maintaining the information

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Service Providers and Stigma

• Believe older adults not vulnerable to HIV
  because they are not sexually active or are
  monogamous (Catania, et al., 1989 Pulio, 1996)
• Sex phobic with this population relates to
  perceptions of own parents or grandparents?
• Provider resists making and HIV diagnosis rule
  out all alternatives before testing (Gutheil
  Chichin, 1991 Linsk, 1994)
• Reluctance to discuss HIV with their
  patients/clients (Feldman, 1994 Quam Whitford,
  1992 Zelenetz Epstein, 1998)

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Psychosocial Issues for the Older Adults Living
With HIV

• Social Support

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Social Support

• Extreme isolation and loneliness
• Older adults had significantly more social
  isolation difficulties than younger adults with
  HIV (Meadows, et al.)
• Loss of support system deceased or alienated
• Resentment towards those (spouses) who may have
  affected them (Nichols et al.)
• Lack of support from others in family, community
• May now have new support networks related to HIV

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Disclosure Issues

• Older PWHIVs less likely to disclose less than
  youngers (Nokes, et al.)
• Range from totally closed, to telling key people
  in family to totally open

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Support/disclosure Issues Clusters

• Lack of Support
• Low support for aging couples
• Rejection by friends, family, church, etc.
• Refusing Support
• I dont need help, I can care for myself
• No one is available to help but Ill get along

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Support/disclosure Issues Clusters

• 3. Support from others without telling them HIV
  diagnosis
• Family events
• Church, etc.many examples of individuals very
  active in church who did not tell pastors and
  others of HIV status for fear of rejection
• Community activities
• 4. Support from others who know about HIV
  diagnosis
• Mixed reactions, occasional rejection but
  generally support system remains intact and active

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Families

• Some older women have reportedly told their adult
  children that they were infected by an assailant
  rather than admitting they had a sexual
  relationship (Malone)
• Perception that telling families is difficult,
  but over time support increases (from Nichols, et
  al)
• Potential family conflict
• Family role differentiation-- jobs

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Changes in Social Lives

• Decline of social lives
• Reluctance to seek out social relationships
• Less opportunity or desire or choice of sexual
  intimacy
• Difficult to face the prospect of entering into
  an intimate relationship with HIV coupled with
  changes in self esteem and body image related to
  aging leads to difficulties
• Reluctance to disclose HIV status to potential
  partner

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Coping

• Psychosocial Issues for the Older Adults Living
  With HIV

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Coping Strategies

• Living with uncertainty Search for meaning
• Journaling
• Prayer and Spirituality
• Spirituality most frequent?
• Active resistance/determined attitude
• I can fight it!-- Problem solving
• Just get through itone day at a time

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Coping Strategies

• Stress reducers, e.g. Yoga, Massage, Tai Chi,
  Exercise
• Counseling, Support Groups
• Develop alternative activities
• Dont dwell on it
• Support and activity groups
• Senior citizen groups--.e.g. theatre activities,
  pottery, etc.
• Advocacy and Service
•  

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Source of Positive Changes in Life

• Self image
• Spirituality
• Personal growth
• Recovery (from drug abuse)

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Older Adults as Caregivers for People Living with
HIV
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Elder as HIV Caregiver

• Growing population of "AIDS orphans", children
  caregiving parent has died from AIDS (Forsyth,
  1995)
• Invisible caregivers
• Aging service providers may not see HIV or know
  how to help
• HIV providers may not see them and their age
  related needs
• Half of adults with AIDS depend upon older
  relatives for financial, physical, medical, or
  emotional support (Allers, 1990 Ory Zablotsky,
  1993).
• Parental absence or incapacity due to HIV/AIDS
  often a reasons for non-parental relatives
  raising children

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Elder as HIV Caregiver Caregiver Issues

• Care for the PWHIV--Tend to neglect own care
• Tend to NOT disclose or distort. May feel alone
  w/ a secret, cut off from social support
• Isolation and depression
• High degree of relationship satisfaction and
  personal sense of achievement
• Need for Permanency planning

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AIDS Education and Training Centers as Resources
on HIV and Aging

• National Association on HIV Over Fifty
• Bi-annual Conferences
• Housed at a Regional AETC
• Resource information hivoverfifty.org
• Local Speakers and Programs
• If your AETC is not working in this area, offer
  to collaborate!
• Regional Conferences
• National Resource Center

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Nathan L. Linsk, Ph. D.National Association on
HIV Over FiftyMidwest AIDS Training and
Education CenterJane Addams College of Social
Work

• www.hivoverfifty.org
• www.matec.info
• nlinsk_at_uic.edu