Author Archive: Dr. James

Talking with Mark S. King about Aging with HIV

Mark S. King writes MyFabulousDisease.com and is a blogger for TheBody.com.  Recently he wrote me with questions about Aging with HIV: A Gay Man’s Guide.   Here is what I wrote him:

Thank you for including me in your blog posting on Aging with HIV for MyFabulousDisease.com.  Your site is a perfect forum for this timely dialogue.

In your note you asked several questions about the physical complications of aging with HIV and the emotional interaction between living with HIV and aging into midlife and beyond.  Both, are very big subjects.  And, while there is growing interest in this area, we are just beginning to understand what it means to age with HIV.  We are at the forefront of a new era in HIV treatment, and much like the early days of the epidemic, people living with the virus are the experts and have to keep updated on new developments and partner with their doctors in order to determine the best course of action.

This is the reason why I wrote Aging with HIV: A Gay Man’s Guide – to help gay men who have lived longer than they ever expected as they manage the transition of aging.

The literature presents several emotional challenges that accompany adult development.  They include, among others, physical changes, new roles in the family, and shifts in our work lives. For gay men living with HIV adaptation to aging also involves responding to changes in the AIDS epidemic and the transition of HIV from a terminal illness to a chronic disease.

Aging is a challenge for all of us.  But, for gay men living with HIV it is even more complex. As you know, this generation of gay men living with HIV have spent the last two decades embroiled in a battle with the AIDS epidemic: Caring for themselves and loved ones; living through immeasurable losses; and managing their own threat of mortality.  This war has utilized all their emotional resources and few have had the time to consider the challenge of aging.

It is easy to get stuck in the task of adapting to aging with HIV.  Signs of stagnation include living in the past, isolating, and avoiding social involvement. Research has found higher rates of depression, lack of social support, and reduced quality of life among middle aged and older people living with HIV. Adapting to aging with HIV can become complicated when emotional issues such as HIV-stigma, internalized ageism, unresolved grief, or survivor guilt impact one’s ability to care for oneself fully in the present.

Aging with HIV: A Gay Man’s Guide offers guidance to navigate this uncharted territory.  The book draws from my qualitative research, as well as my training as a psychotherapist and 20 years of experience in the field.  Questions and exercises guide the reader through self-examination to evaluate how he is adapting to the challenges of aging with HIV and to develop tools to optimize their experience.  There are quotes from gay men living with HIV, as well as brief text boxes that review the relevant research. The book also includes a chapter by James Schmidtberger, MD, Director of the Leicht Clinic, an HIV-clinic in New York City, reviewing the medical research on HIV over fifty.

My hope is that Aging with HIV: A Gay Man’s Guide will start conversations across the country that normalize the experience of aging and empower gay men to define for themselves what it means to optimally age with HIV.

HIV prevalence aged fifty and older

The CDC released its HIV surveillance report 2005-2008 in June and Dr. Stephen Karpiak of ACRIA just sent me the data on HIV prevalence in the over fifty population.  The number of people over age fifty is increasing exponentially, and one of the greatest population increases is for people between the ages 50-65.  These figures include increases in the rates of new reported cases of HIV, as well as people living with the virus over age 50.  Looking at these figures I conclude that midlife and older people living with HIV are going to represent a growing percentage of those living with HIV in the US and the specific issues faced by this age group are a growing health concern.

In 2007 the total estimated number of people living with HIV/AIDS climbed over the million mark, and the percentage of people estimated to be living with HIV/AIDS over age 50 was 31%.  This percentage rose in 2007 from less than 26% estimated in 2005.  Given the rate of increase (2.2%) we can estimate the current (2010) number of people living with HIV over fifty to be closer to 40%. 

The CDC also estimates that in 2008 16% of new diagnoses of HIV occurred in people over fifty.  This is an increase from the 2006 CDC estimate of 10%.

1Centers for Disease Control (2010) Diagnoses of HIV infection and AIDS in the United States and Dependent Areas, 2008; HIV Surveillance Report, Volume 20 June 14, 2010.

Aging with HIV coming to the White House

Next week the White House will be holding a meeting on HIV and Aging.  The purpose of this meeting is to raise awareness about people who are aging with HIV or contracting HIV at age fifty or older; to explore the unique clinical manifestations of HIV in older adults; to discuss existing services for seniors living with HIV and highlight successes as well as gaps; and to discuss targeted strategies for federal and non-federal stakeholders to realize the vision of the President’s National HIV/AIDS Strategy.  This meeting is part of a series of discussions that have been convened at the White House by the Office of National AIDS Policy (ONAP) over the past year.  The invitees are leaders in the field of research on HIV Over Fifty and include Charles Emlet, PhD, Professor of Social Work at the University of Washington, Tacoma and Dr. Stephen Karpiak from ACRIA.

I am excited to learn of this meeting, as it tells us that the concerns of middle aged and older people living with HIV are being discussed at the national level.  I will relay to readers the results of this meeting when I get them.

Creativity

In San Francisco this weekend I attended ArtSpan’s Open Studio tour of artists’ spaces and work in the Castro, Noe Valley, and Mission Districts.  I had the opportunity to meet with many of the artists and talk to them about their work.  These discussions reaffirmed my belief in the transformative and healing powers of creativity, and the important role that artistic expression has in gay aging and adapting to aging with HIV.

Gay themes were present in many works.  There were sculptures, paintings and photography that depicted the beauty of the male form.   Some of the work was homoerotic, and I thought of gay men’s reminisces of San Francisco in the 1970’s and 80’s when I saw the open, playful sexuality expressed in these pieces.  Some of the artists included political statements about HIV or gay rights in their work.  And, others were fun and campy reflections of the gay sensibility.  When talking with the artists I learned about their craft and the dedication and commitment it takes to master a form and develop a work to completion.

The qualities found in creativity (playfulness, self-expression, empowerment, and mastery) can be utilized for continued growth in adulthood.  When we engage in creative pursuits, as professionals or amateurs, we discover new parts of ourselves, engage with our environment in new ways, and express our unique perspective of the world for others to share.  We can use our creativity to re-engage in life, to reconnect with forgotten parts of ourselves, to mourn losses or bridge former views of ourselves and experiences of others into the present.  As one artist explained, “The work expresses itself through me.  I am not sure what the final product will be until it emerges.”

For many gay men, HIV interrupted the flow of life.  Caring for yourself and others, grief and anticipating mortality knocked you off course.  In order to get back on track you need to review what you have come from, consider where you are, and determine what to take with you as you move into the future.  Creative expressions, like painting, sculpture and photography (or music, dance, writing etc.) can free you up to experience yourself in a new way.  If you make the time, you may be inspired by what emerges.

Please feel free to share your creative expressions on aging with HIV here or on the community page.

 

Go West!

I am headed for San Francisco. I hope to have the opportunity to learn more about how gay men are adapting to the challenges of aging with HIV on the other side of the country. I think I will have much to share, however, I may not have the opportunity to add any new posts until I return on Oct. 12th.

In the meantime I encourage you to keep the conversation going. Add your thoughts about aging with HIV to the Community page. Find support using the links on the Resources page. Send me an email via my link on the Psychotherapy page. And, you can still pre-order Aging with HIV: A Gay Man’s Guide at a discounted price on Amazon. Just click on Buy the Book, above.

And, you can subscribe to this website using the tab on the right to stay informed about Book Updates, HIV and Aging News, and Upcoming 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.

SAGE policy paper on HIV Over Fifty

SAGE has developed a policy paper on HIV and LGBT Aging that addresses key prevention, education, treatment, and accessibility issues.  To read the paper go to the SAGE website or follow this link:

http://www.sageusa.org/programs/advocacy.cfm

HIV and Aging News

The American Journal of Nursing recently published an article on aging with HIV to be used in nursing education. The article contains an overview of the issues affecting middle aged and older people living with HIV, and presents a review of research relevant to adults with HIV on a range of topics, including: successful aging, cognitive impairment in aging with HIV, use of social support, coping and mood issues, as well as co-morbidities and medical complications for an aging population. To read the article, click on the link below.

Vance, David E. (2010) HIV and Aging: Clinical Considerations for an Emerging Population, AJN, American Journal of Nursing
March 2010
Volume 110 Number 3
Pages 42 – 47

What do you have to say about Aging with HIV?

If you were keeping a blog about Aging with HIV, what subjects would you write about?

I’m sure you have some thoughts on the subject.  Add them on the community page.  Lets get the conversation started.