HIV, Aging and Cognitive Impairment
I’ve been spending some time lately on the relationship between cognitive impairment and older age in people living with HIV. The research is inconclusive. Recent findings suggest that there could be an increased risk for HIV-associated dementia and minor cognitive motor disorders in this population. However, as I pointed out in last week’s post, research in this area is new and the findings are complex. While older age may be a contributing factor in cognitive impairment, other issues to consider are: HIV itself, treatments for HIV, other age-related diseases and their treatments, as well as heredity and lifestyle.
A first step in optimizing your health is to identify the factors that you can control. In order to do that, older people living with HIV must consider the issue of co-morbid conditions.
Comorbidities and Cognition
Aging with HIV can create a complicated health-related picture. In addition to the effects of HIV itself, people taking medications to treat HIV and its symptoms may experience co-morbid conditions from those drugs, such as heart disease and diabetes.
This population also faces non-HIV- related illnesses common to older persons in the general population including: diabetes, hypertension, arthritis, and coronary artery disease. These comorbidities may affect HIV disease progression and may play a role in cognitive impairment.
Depression and other untreated mood disorders can also impact cognition and affect quality of life. In addition, alcohol and substance use can negatively affect one’s cognitive functioning.
Finally, illness can set in motion a negative feedback loop when physical limitations cause reductions in social involvement, depression and further complications of illness.
Developing an accurate picture of your health involves appreciating the complex and changing impact of HIV-disease progression, medications, mood, lifestyle and heredity. That means routine general health maintenance and appropriate diagnosis, treatment, and prevention of non-HIV-related medical and neuro-psychiatric conditions*
There is a great deal you can do to optimize your health outside of your doctor’s office. Your daily health care regimen can include activities that prevent, treat or modify the presence of comorbid conditions. Factor’s such as diet, exercise, participating in alternative therapies (such as meditation, acupuncture, yoga and massage), and maintaining an active social life have all been demonstrated to improve quality of life. Optimal aging with HIV involves working within your limitations to maximize your day-to-day life.
What one step can you take today to enhance your well-being?
*Goodkin, K. & Stoff, D., “Older Age and HIV Infection.” In Cohen M, Gorman J, eds. Comprehensive Textbook of AIDS Psychiatry. New York, NY: Oxford University Press, 2008, pp. 357-376.
In yesterday’s New York Times, columnist Roni Caryn Rabin reported on the results of the California Health Interview Survey. The study, conducted by the by the Center for Health Policy Research at the University of California, Los Angeles, presented alarming statistics about the health of the aging LGBT community in California.
Among the statistics reported on gay men’s health and aging were the following: “Older gay and bisexual men — ages 50 to 70 — reported higher rates of, and physical disability than similar heterosexual men. Older gay and bisexual men also were 45 percent more likely to report psychological distress and 50 percent more likely to rate their health as fair or poor. In addition, one in five gay men in California was living with infection, the researchers found. Yet half of older gay and bisexual men lived alone, compared with 13.4 percent of older heterosexual men.”
Reading this article, I was once again reminded of my early career as a social worker in the field of LGBT aging. In the 1990s I was one of a team of clinicians who presented similar statistics to service providers in order to change public policy and advocate for LGBT sensitivity in programs for the elderly. We were invited to senior centers and other agencies to teach providers how to adequately care for their LGBT clients, and much of our work involved explaining how the stigma of homosexuality impacted that generation of seniors and how agencies need to assess their programs to root out ways they perpetuate that stigma.
We shared our clients’ histories of discrimination – how they had been rejected by families, fired from jobs, dishonorably discharged from the military, harassed, evicted from apartments, beaten, arrested, and institutionalized just for being gay. We talked about the effect this stigma could have had on their self-esteem. How many had to hide their sexuality and create dual lives.
We demonstrated how stigma can lead to shame and low self-esteem, and how many people react to being labeled “deviant” by hurting themselves through neglect and self-destructive behavior.
And, we stated that while things had changed during their lifetime, discrimination was still a reality in the lives of LGBT seniors. Their sexuality was not represented, and often shunned, at the very agencies in which we were invited to speak. The conclusion – “Given their histories of stigma, it is understandable that many of our clients are distrustful of health care providers. It is the service providers’ responsibility to earn the trust of LGBT seniors.”
Our model of service provision came from the clients we served. I had heard many stories of resilience from LGBT seniors, and these people helped me figure out how sensitivity and empowerment can be used to help others who had experienced lifetimes of homophobic oppression.
Reading the New York Times article I was saddened, but not surprised. I had hoped that things had gotten better in the last two decades. That this generation of LGBT elders had not experienced the same health-damaging effects of stigma. And, that service providers had learned to eliminate the barriers that prevent people in the LGBT community from getting the care that they need. But, these statistics show that these problems persist.
While researching Aging with HIV: A Gay Man’s Guide, I interviewed men who shared stories of discrimination. They told how stigma affected their self-esteem and self care. They also demonstrated resilience in the face of homophobic discrimination, how they had built on their strengths, sought out support from the community, and developed strategies to empower themselves and others.
There are many challenges of aging, but for gay men living with HIV they are compounded by the realities of homophobia and AIDS stigma. I hope the release of these new findings encourage a conversation to find new ways to fight stigma and improve the health and well-being of the aging LGBT community.
Follow the link to read the NY Times article.
I am pleased to tell you about a group that I will be running with a colleague in the Village.
The focus of the group is gay men and midlife. For the generation of gay men now facing mid-life the AIDS epidemic shaped young adulthood. Gay identity was defined by the emergence of AIDS and young gay men were faced with the tasks of caring for loved ones, grieving, creating community and learning how to care for oneself in the face of homophobia and discrimination.
For this generation of gay men, the fact of being in mid-life is to have survived. It may helpful to reassess their coping strategies in order to meaningfully respond to changes in careers, relationships, bodies and sex lives that accompany aging. This group will allow its members to reflect, reassess and address questions such as:
What does it mean to be a middle-aged gay man now?
What wisdom have we achieved and what coping strategies have we developed in order to arrive at this place?
How has my earlier experience with AIDS and HIV affected my view of myself and aging?
What new strategies and skills do we need?
This 12 week group should prove to be a rich and rewarding opportunity to connect, receive support, learn from shared experiences, draw on past lessons and achieve new understanding.
If you are interested, or know of someone for whom such a group would be helpful, you can contact me at this link, or by using the “Dr. James” tab, above:
Here’s what they say about HAG on their Facebook page: “Affectionately called HAG, the HIV Aging Group discusses all issues related to the senior HIV patient experience.”
If you are a facebook user you can join their discussion. Just go to your fb page, search for HAG and then put in a request to join.
As we’ve been discussing on this blog , aging with HIV involves adapting to a great deal of change. One aspect of optimal aging with HIV is re-evaluating your coping strategies, to make sure they are meeting your changing needs.
This month we will be discussing Self Care. December can be a stressful month and you may want to make sure that you are doing everything you can to take the best care of yourself that you can.
Developing healthy sleep habits is an integral part of self care.
There are several things in life that could impact your sleep. Changes in medication, physical changes that accompany aging, stress, and environmental changes can all affect your ability to get a good night’s rest. The following are some recommendations for getting a good night’s sleep taken from Aging with HIV: A Gay Man’s Guide.
Many people’s sleep habits interfere with getting a good night’s sleep. For example, eating or drinking in bed, reading/playing cards in bed, and falling asleep with the TV on for background noise are just a few. These practices train your body to be awake in bed. If you are having sleep problems, try retraining yourself: go to sleep and get up at the same time every day, remove the TV from the bedroom, make your bedroom quiet and dark (use blackout shades if necessary), do not read in bed, and do not eat or drink in bed. The bed should be only for sleep (and sex). Establish a prebedtime ritual, such as turning off the TV and computer at least 30–60 minutes before bedtime, changing out of your day clothes, and flossing and brushing your teeth, to prepare your body for sleep. When you feel tired, go to bed. If you cannot sleep after 20 minutes, get up and leave the bedroom, but don’t turn on the TV or computer. Wait until you feel tired and try again. If you continue to have trouble sleeping, you should bring it up with your doctor.
Next post: Eating Well.
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.
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.
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.
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.
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
Volume 110 Number 3
Pages 42 – 47