Category Archives: Book Updates, Publications, Speaking Engagements

“Fragile Networks of Social Support” Still a Concern Among Middle Aged and Older People with HIV

In a 2005 study of HIV over fifty Shippy and Karpiak described this group as having “fragile networks of social support.” The study participants had little support from family, and relied mostly on the involvement of peers, many of whom were living with HIV themselves. This finding concurred with earlier research on HIV over fifty. Study of this population found that people over fifty had a smaller network of social support, had fewer emotional and instrumental supports, were less involved in social service organizations, and reported less satisfaction with their support networks than younger people living with HIV.

A recent ACRIA needs assessment of older clients at GMHC conducted by Brennen, Karpiak, London and Seidel concluded that lack of support continues to be of concern. They found that the limits of social networks documented in earlier studies were also found in this population. And, that perceptions of support availability and adequacy were also low in this group. (A copy of this report will be available soon.)

There are many reasons why middle aged and older people would have less support than younger people living with HIV. As we age our networks of social involvement do get smaller. We tend to rely on smaller groups of more intimate companions. And, loss of family and friends can contribute to smaller circles of social support. Research in this area has also shown that middle aged and older people experience a double stigma of HIV and age and that anticipated stigma affects one’s interest in asking for help from friends, family, and service providers, including AIDS care organizations.

In my research I found that loss plays a significant role in limiting the support networks of middle aged and older people living with HIV. This generation of survivors have had their social networks decimated by HIV. Their peer group is gone, the very people they would rely upon to deal with the challenges of aging. And, many are reluctant to make new friends, for fear of opening themselves to further losses.

However, as this research implies, it is imperative that your social support system be strong to meet the challenges of aging with HIV.

To begin to assess the strength of your support network, ask yourself these few questions: How satisfied are you with your support network? Do you have someone to rely on if you were ill? If you needed someone to take you home from a medical procedure? To offer advice or assistance if you got caught in a financial jam? To talk to when you are stressed out? Is there someone you can lean on if you are feeling down? Someone who would drop everything if you needed them right away?

How often did you rely on the same person? What if they weren’t available?

Now, consider what steps you have taken to expand your social networks, to keep in contact with friends and family, to reach out to people, or make new friends.  What gets in the way of doing more to build your social support?

Rebuilding, maintaining, and enhancing your social supports takes effort. In Aging with HIV: A Gay Man’s Guide I discuss strategies for developing a strong social support network. The book offers tools to assess the adequacy of your support network, strategies for overcoming obstacles to social involvement, and guidance on how to rebuild your networks of social support. Maintaining adequate social supports is an integral step to optimal aging with HIV.

Aging with HIV: The Complications of Success

I am pleased to be presenting a workshop with Dr. Stephen Karpiak at the SAGE National Conference and LGBT Expo, “The Future of Aging Is In Our Hands” in New York City.  This session will take place on Saturday November 13th at 10:45-12:15pm in the CUNY Graduate Center, room # 9204.  The conference theme is “Empowerment” and will be organized by and for the LGBT aging community.  Scholarships are available.  For more information about the conference and how to register for our workshop go to the SAGE website.

Here is the workshop description:

By 2015 half of all people living with HIV will be over age 50 in the US.  Effective antiretroviral treatment has transformed HIV into a chronic illness, where a longer life span is achieved. But the aging process for this population is often characterized by the early onset of chronic age-related conditions. Often a 55-65 year old with HIV has the clinical profile of a 75-85 year old.

A lead researcher on HIV and Aging, Dr. Stephen Karpiak, will provide an up to date assessment of the health and psychosocial needs of this dominating HIV population. He will provide an overview of clinical data as well as research which has identified critical psychosocial issues including depression and social isolation. He will present challenges to social networks and successful aging for people living with HIV.

Dr. James Masten will lead a discussion of the challenges of aging with HIV.   He will present a ten-step strategy to optimal aging with HIV, found in his new book, Aging with HIV: A Gay Man’s Guide.  This workshop will help you identify the complications of successful treatment of HIV-disease and develop skills to adapt to the changes of growing older when you’ve lived longer than you expected.

If you like, please let me know if you will be attending and what you would like to get out of the workshop.

Book Update

We’re just two months away from the publication of Aging with HIV: A Gay Man’s Guide.  I am including this excerpt from the Preface to acquaint you with the book:

Is This Book For You?

  • Have you lived with HIV longer than you ever expected to?
  • Have you spent the past 5, 10, or 20 years dealing with the impact of HIV on your life, your friends, and your community?
  • Do you wonder whether changes in your body are due to AIDS or age?
  • Have you made plans for your future?
  • Are you satisfied with your life today?

If you’re like the men with whom I spoke, you probably didn’t think you would live long enough to concern yourself with aging.  All of a sudden you’ve become aware of changes in the way you feel physically, in the way others treat you, and in your interests and priorities.  Aging with HIV means adapting to a whole list of unexpected changes.

See if you relate to these gay men as they talk about aging with HIV:

Tim*: I never thought I would live this long.  I’ve buried all my friends.  I didn’t think I’d see forty, and I’m over fifty!

Mario: Now I, pardon my Armenian, I don’t give a flying fuck, you know? I just don’t care. So I find that the older I’ve been getting and my friends my own age say the same thing, most of us, you just get to a point where you realize life really just isn’t about anything that anybody else thinks. It’s about you. It’s about what you think. You know and who cares what anyone else thinks?


Luis: Because I don’t think of the virus has… has changed me. I think it’s changed me is my age. My wisdom. My experiences. Times. I don’t think it’s been the virus. I don’t think the virus has slowed me down. I think I’ve slowed down. I’m seeing life different. Because of being a middle aged man. Not because I’m a gay man, or because I’m an HIV man. Because I’m a middle aged man. And I see life and I see people and I see the times and I see how things have changed.


Peter: Bette Davis had it right, “Getting old ain’t for sissies.”

If you identify with these statements, then consider this:

Research on aging tells us that, in general, we follow a somewhat predictable path of development from childhood to old age.  Each era of life presents a series of challenges that, when mastered, help us prepare for the next stage of life.  In middle adulthood we deal with common issues in the areas of physical changes, career issues, family, and relationships that help us plan for the future.  We make decisions such as whether to take a job in a new city, how to care for aging parents, and when to make commitments in our relationships.  We travel on this path of development with a cohort of peers who are involved in many of the same tasks.  Our peers are not only friends we can rely on for support, they also serve as mirrors of our experience.  We compare ourselves to others in our age group to evaluate how we are progressing along our life course.

But AIDS has knocked many gay men off their life course. As Mark put it, “We are the generation wiped out by HIV.”  Since AIDS was first identified in 1981, gay men have been engaged in a consuming battle with HIV.  Just as a country at war diverts its resources from areas such as health care to military funding, gay men of this generation have put their efforts into fighting the effects of HIV and AIDS in their bodies and communities.

Meanwhile time has rolled on and aging has affected all the areas of your life:  Your body has changed; your friendships and social life are no longer the same, you have a different perspective on work and money, you have a new role in your family, and you have a new attitude about sex and dating. The strategies that you had been using to cope with the challenges of life no longer work in the same way. Whether you recently learned your status or you’ve been living with HIV for decades you need help getting back on your life course to make the most of this phase of your life and to prepare for the future.

That’s where this book comes in.

*All names have been changed.

Aging with HIV: Updates, Corrections, Upcoming Events and New Developments

Welcome to the forum! This page is currently under construction. When it is completed we will have a description of the book, the authors and endorsements from professionals in the field. The site will have links to resources in your area and a section where you can add your thoughts and get feedback and information from other people living with HIV in midlife and beyond.

Look for Aging with HIV: A Gay Man’s Guide in your bookstore soon! Publication date – November, 2010.

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