HIV/AIDS and the Senior Population

1. HIV/AIDS and the Senior Population Nathan L. Linsk Donna Gallagher Presented at Association of Nurses in AIDS Care San Juan, Puerto Rico 11-3-00

2. Faces of HIV Over Fifty David • 72 year old, deaf with cardiovascular history and legally blind • Infection by transfusion 21 years ago

3. Faces of HIV Over Fifty Bill • 62 year old gay man • T-cells about 150 • Takes 3 drug therapy, bactrim • Issues of depression • Recent diagnosis of lymphoma

4. Faces of HIV Over Fifty Charles • 72 years old, lives alone • Infected 15 years ago • Long history of hypertension and depression • AZT monotherapy for past year

5. Faces of HIV Over Fifty Jose • 60 year old • Uncontrolled diabetes and asthma • Non compliant on diet, insulin • Antiviral naïve to date

6. Faces of HIV Over Fifty Mary • 60 year old Hispanic woman • Transfusion associated with hysterectomy 11 years ago • 700 or so t-cells • On 3 drug therapy, VL undetectable

7. Ways Older Adults are Affected by HIV • HIV Infected • HIV Affected • HIV at Risk • HIV Caregivers

8. Why Over Fifty?

9. HIV in Older individuals • Three groups • newly infected • newly diagnosed • aging individuals in care • Different but overlapping medical and psychosocial needs • As individuals survive longer groups will continue to grow Source: Donna Gallagher

10. Age of AIDS Diagnosis As of December, 1999 Males and FemalesNumber Percent 30-39 329,065 45% 40-49 190,087 26% 20-29 123,579 17% >50 78,197 10% <20 12,443 2% Total 733,371 100% Source: Center for Disease Control HIV AIDS Surveillance Reports

11. AIDS Over Fifty Age of AIDS Diagnosis, as of 12/99 Source: Center for Disease Control HIV AIDS Surveillance Reports

12. Age Subgroups by GenderPercentages of All over Fifty. Dec. 1999

13. AIDS Cases by Sex, Age at Diagnosis and Race/Ethnicity Males. Dec. 1999

14. AIDS Cases by Sex, age at Diagnosis and Age/Ethnicity: Females (Dec. 1999)

15. Transmission Sources in People over Age 50Percentages of all Over Fifty 1982 1988 1992 1994 1996 1997 Gay/Bisexual Men 90 66 62 52 49 48 IV Drug Users 0 8 11 16 17 17 Gay/Bi & IDU 7 1 2 2 3 2 Hemophiliac 3 5 1 1 1 1 Heterosexual 0 5 6 10 11 12 Transfusion 0 17 8 8 6 6 Other/ Undetermined 0 0 11 11 13 14 Source: Center for Disease Control HIV AIDS Surveillance Reports

16. Transmission Sources in People over Age 50Percentages of all Over Fifty

17. Prevention • Believe that elders do not get HIV--FALSE! • Vulnerability to infection

18. Prevention • Lack of education, • Ageism • Homophobia

19. Prevention Reluctance to be tested due to •   The closet • Disclosure issues

20. Prevention • Lack of receptive testing setting  • Most have no gerontological knowledge or materials • May in fact discourage elder from getting tested

21. Prevention • Do older people use condoms? • Belief that older people can’t get infected • Condoms only for birth control? Previous cultural experiences??? • Self esteem issues. • Female control issues? • Fear of rejection in sexual situation • Issues of erectile changes. • Complications, e.g. rashes, etc. Really no different than other groups

22. Short Sex and Drug History for Older Adults • Do you mind if I ask you some questions about your sexual health? • Are you sexually active---do you have sexual or intimate contact with another man or woman? If yes, with men, women or both? • Do you take disease precautions. If yes, explain. If not, why not?

23. Short Sex and Drug History for Older Adults • Do you take any recreational drugs that involve needle transmission? If yes do you share needles? How do you clean them? • Do you have any questions you would like to ask me about your sexual health, AIDS or sexually transmitted diseases?

24. Psychosocial Issues for Older Adults with HIV

25. Issues about new therapies and elders use of drugs(1)Are they deserving? too few years of life left?(2)Can elders adhere to the regimens?(3)Cost issues(4)No data to speak of on elders Issues about new therapies and elders use of drugs(1)Are they deserving? too few years of life left?(2)Can elders adhere to the regimens?(3)Cost issues(4)No data to speak of on elders

26. Psychosocial Issues for Older Adults with HIV  Younger people may be living longer: More maturing into old age of PWHIVs Uncertainties is now even more! Phoenix/Lazarus effects

27. Psychosocial Issues for Older Adults with HIV • Separating the effects of • "normal aging" or unique concerns related to age • from the experiences living with HIV

28. Characteristics of Elderly PWHIVs Falling through the Cracks Agism AIDSism

29. Prevention • HIV Prevention is Everybody’s business • Older People have limited Information • Agism

30. HIV Over Fifty Study • Who are HIV+50+ people? • How do HIV+ 50+ people deal with HIV? • How to HIV+50+ people deal with growing older? • What are their preferences for services?

31. HIV Over Fifty Study • Ages: 51-72 • 13 Males, 2 females • 11 white, 2 Hispanic, 2 African American • Transmission • 4 Transfusion • 6 -10 Male to Male sex • 2 Heterosexual • 2-3 unknown

32. HIV Over Fifty Study Preferences for services—Variation among the participants. • Several reluctant to use senior services • Most felt need for specialized HIV services. • Most identified with HIV service networks and were skeptical of aging service programs being able to meet their HIV related and socialization needs.

33. HIV Over Fifty Study • Long-term survivors • Extreme isolation and loneliness • Majority of their support system is deceased or alienated from them.

34. HIV Over Fifty Study • “I’m not old, I’m HIV” Differences: • Less life lost • Age appropriate declines • Disclosure– I can’t tell Younger PWHIVs don’t want me around vs see me as role model

35. HIV Over Fifty Study Search for Meaning • Advocacy • Spirituality

36. NAHOFNational Association on HIV Over Fifty • National network of HIV affected older adults, care and service providers and researchers • Focus on prevention, advocacy, education • Established in 1995

37. NAHOFNational Association on HIV Over Fifty to increase the knowledge of professionals and persons living with HIV about the disease in the older years.

38. National Association on HIV Over Fifty NAHOF • Educational Programs • Media • Advocacy • Research

39. National Association on HIV Over Fifty • NAHOF webpage www.hivoverfifty.org Membership base of 80 formal members and about 300 participants in an information network

40. National Association on HIV Over Fifty 2001 National Conference June 22-23 Newton Marriott Boston Area

41. Task Forces and Programs HIV over Fifty Task Forces have evolved in England and in several states in the United States. HIV over Fifty Task Forces are now active in • New York   • Massachusetts • New Jersey • Florida • Illinois • Arizona Related work is ongoing in California, Washington, D.C., and Kansas City, MO.

42. Elder as HIV Caregiver v      Almost no previous research on issues for older caregivers when the care recipient is HIV-infected or HIV-affected vParental absence or incapacity due to HIV/AIDS often a reasons for non-parental relatives raising children v      One-half of adults who are ill with AIDS depend upon older relatives for financial, physical, medical, or emotional support (Allers, 1990; Ory & Zablotsky, 1993).

43. Elder as HIV Caregiver One-half of adults who are ill with AIDS depend upon older relatives for financial, physical, medical, or emotional support (Allers, 1990; Ory & Zablotsky, 1993). Growing population of "AIDS orphans", children whose caregiving parent has died from AIDS (Forsyth, 1995; Levine, 1993), most often cared for by grandparents through standby adoption or guardianship (Allers, 1990; Beer, Rose, & Tout, 1988).