The Challenges of Multimorbidity Management And Caregiving

HIV and Aging: The Challenge of the Epidemic’s Fourth Decade 2012 IAS Meetings

Stephen Karpiak, PhD

Associate Director for Research

Mark Brennan-Ing, PhD

Senior Research Scientist AIDS Community Research Initiative of America ACRIA ACRIA Center on HIV and Aging NY, NY New York University College of Nursing

Median Life Years at Age 20 With HIV In-Care

33.2

27.1

24.3

2 '85-87 4 '90 to '92

ART

'95 to '97 '00 to '02 '03 to '05

Good News

• ARVs prevent the collapse of the Immune System

Good News

• Today there are 2 dozen ARVs

Reality

• ARVs do not restore the immune system to normal levels

Not Good News

• ARVs do not prevent the cascade of inflammatory responses that are caused by HIV infection

ROAH 1 :

1000 HIV+ NYC Residents Age 50 and Older

Average Number of Comorbidities

ROAH 1 : 1000 HIV+ NYC Residents Age 50 and Older 5 4 3 2 1 0

1,1 3,3

Elderly 70+ Brennan et al., 2009 n=1000 NYC HIV+ Over 50

Average Age= 55 Years

ROAH

% on Non-ART Medication by Age

Swiss Cohort N = 8575 Anti-Hyper not ACE <50 5.6

>65 31.3

p -value <0.001

<0.001

ACE Inhibitors 11.1

32.9

<0.001

Lipid-Lower 12.7

41.8

<0.001

Oral Anti-diabetics 2.1

9.1

<0.001

Insulin 1.4

5.8

<0.001

Anti-platelet 5.8

28.9

Anti-depressant 10 7.8

0.659

Hasse et al., ..Swiss HIV Cohort, 2011 CID53:1130-1139

Many Age-Associated Disease are More Common in Treated HIV Patients than in Age-Matched Uninfected Persons

 Cardiovascular disease  Cancers  Bone fractures; osteopenia  Left ventricular dysfunction failure  Liver Failure  Kidney Failure  Frailty  Immune System

These Illnesses Associated with Old Age Occur as a Result of MULTIPLE Increased Risks CONTEXT

RISK • HIV RISK • Gender RISK • Substance Use History RISK • Life Style: Exercise, Diet RISK • ARVs RISK • Other Co-occurring Illnesses

Multi-morbidity in HIV: Regional Factors

•

In North America and Europe:

HCV co-infection, alcohol, tobacco, and opioid abuse •

In Africa:

Tuberculosis, malaria, obstructive lung disease (smoke inhalation) and alcohol abuse

AAHIVM: Guides for the Management of Older Adults with HIV American Academy of HIV Medicine Expert Panel of Leaders in HIV Treatment Research and Geriatric Care American Geriatrics Society

Dec 1, 2011

ACRIA Center on HIV and Aging

Summary report from the Human Immunodeficiency Virus and Aging Consensus Project: Treatment Strategies for Clinicians Managing Older Individuals with the Human Immunodeficiency Virus. J Amer Geriatrics Society 2012 May;60(5):974-9.

What are the implications of multimorbidity management ?

Achieving Optimal Health Must Include THE PERSON Patient Directed Care Their Priorities and Supports must be considered Multi-morbidity is overlapping injury to multiple organ systems. Geriatricians warn against the blind application of screening and treatment guidelines developed for primary care The sum is greater than the parts.

Correlation Between Depressive Symptoms and Illnesses in Older Adults with HIV

•

Vision Loss

•

Hearing Loss

•

Dermatological Problems

•

Heart Conditions

•

Respiratory

•

Stroke

•

Diabetes

•

Broken Bones

•

Impotence

•

Neuropathy

Havlik, Brennan, & Karpiak …2011

.160** .094** .134** .086* .167** .059

.067* .079* .092** .049

p <. 05*, p <. 01**

Over 50-75% of study groups of older adults with HIV show moderate to severe depression

Depression Causes Non-Adherence to ALL

Medication including HIV Meds

Where health care professionals are few: task shifting…training and supporting people with lower levels of education to do the work of doctors and nurses.

What is the most burdensome disease in the world today? According to the World Health Organization, the disease that robs the most adults of the most years of productive life is not AIDS, not heart disease, not cancer. It is depression.

According to the World Health Organization, three-quarters of the world’s neuropsychiatric disorders are in low-income or low-middle income countries.

Amadi was 59 lost five of 9 children… 3 of them to AIDS. She was numb and passive, sad and irritable.

She could not care for her family, work in her garden, or do her mat-weaving.

Using a faith-based group's infrastructure to recruit peer facilitators and the women The study designed to test interpersonal therapy, proved as effective as medicine at curing major depression in Western settings. The women all became active in the community, and each talked to her own family members about H.I.V. infection and how to prevent it.

Helena Verdeli, assistant professor of clinical psychology and director of the Global Mental Health Lab Columbia University’s Teachers College. NY Times Julky

•

18 weeks after starting …Amadi had no more symptoms of depression. She was once again, to use her husband’s words, the fierce, loving, strong woman she had been.

Caregiving

Mark Brennan-Ing PhD

Senior Research Scientist

Background

Caregiving is a universal human experience – we will all provide care or receive care at some point in our lives (Rosalyn Carter) Caregiving occurs in a social and cultural context, thus....

Caregiving in response to HIV varies by country, culture, availability of resources, etc…

Caregiving Issues in High Income Countries

• In resource-rich countries like the U.S., there has been wide-spread access to ARVs resulting in the aging of the population living with HIV • This success has brought about the challenge of multi-morbidity: • Multiple chronic illnesses result in disability and increase caregiving needs • However, many lack caregiving resources and options

CAREGIVERS are derived from SOCIAL NETWORKS

Need for Caregiving: PLWHA 50+ in the U.S.

• Average Age= 55.5 Years • Average Number Comorbid Conditions = 3.4

• 46% reported difficulty with at least one Instrumental ADL • 22% reported difficulty with at least one Personal ADL Have Not Needed Care 62% Currently Need Care 19% Needed Care in Past 19% Brennan, M., Karpiak, S. E., London, A. S., & Seidel, L., (2010).

A Needs Assessment of Older GMHC Clients Living with HIV.

http://www.acria.org/files/GMHCFinal.pdf

The Problem: Fragile Social Networks!

• • The social networks of older adults living with HIV are fragile – lack of family involvement and reliance on friends, many who are also HIV+ Fragile social networks result from: – Stigma • • Self-Protective Withdrawal (Emlet, 2006) Rejection due to stigmatized behaviors (e.g., drug use, homophobia) (Flowers et al., 2006; Lichtenstein et al., 2002; Mayers & Svartberg, 2001; Trzynka & Erlen, 2004) – MSM are much less likely to have partner/spouse/children to rely on in times of need

Proportion Living Alone: ROAH vs. Community-Dwelling NYC Elderly

ROAH 70% NYC Elderly 65+ 39% 0% 10% 20% 30% 40% 50% 60% 70% 80% 1 Brennan, M., Karpiak, S. E., Shippy, R. A., & Cantor, M. H. (2009). Older adults with HIV: An in-depth examination of an emerging population. New York: Nova Science Publishers.

ROAH: Informal Network Composition

Parent Child Sibling Other Relative Friend 0 20 Living

41.2

27.2

54 37.7

78.7

43.8

50.4

31.4

40 Functional 60

69.4

66.1

80

Caregiving Issues in Low Income Countries

• In resource-poor areas, such as Africa and Southeast Asia, the brunt of caregiving resulting from HIV infection is borne by older adults (age 50+) • Older adults care for their children who are HIV-infected • Older Adults care for orphaned grandchildren whose parents have died of HIV/AIDS

Caregiving in Sub-Saharan Africa

(Bock & Johnson, 2008; Ogunmefun et al., 2011; Ssengonzi, 2007; 2009 )

Older adults provide care to their HIV-infected children when illness at terminal stage Caregiving for grandchildren begins before children are orphaned by parents with HIV Most care is provided by women, resulting in higher rates of physical ailments and distress These caregivers face severe economic strains and drastic disruption of living arrangements (i.e., frequent travel, absence from home) Caregiving may result in secondary stigma

Caregiving in Southeast Asia

(Kespichayawattana & Van Landingham, 2009; Knodel, 2008; Knodel & Wassana, 2004) Similar to Africa, older adults provide care to their HIV-infected children when illness at terminal stage and also care for grandchildren Women provide the bulk of care Caregiving has a negative impact on finances by constricting time for economic activity (working) Loss of adult children due to AIDS exacerbates the economic impact Caring for grandchildren adds to this severe economic burden

Conclusions

Caregiving as a result of HIV/AIDS has a substantial impact in both high- and low-income countries Women bear the brunt of this caregiving, and pay many of the consequences As ARVs become more available in low-income countries, greater numbers of PLWHA will grow older and need care due to multi-morbidity Caregiving can be invisible and undervalued How can we best leverage caregiving resources and support those caring for PLWHA and their families?