Tomorrow is National HIV/AIDS and Aging Awareness Day. The AIDS Institute is hosting a Webinar on line conference to discuss the issue. You can join by registering at: https://www2.gotomeeting.com/register/946895474.
Earlier this week Jane Brody published an article in the New York Times on the difficulty distinguishing mild cognitive impairment from the effects of normal aging. She explains, “While most people experience a gradual cognitive decline as they get older (only about one in 100 lives long without cognitive loss), others experience more extreme changes in cognitive function, the neurologist wrote in The New England Journal of Medicine in June. In population-based studies, mild cognitive impairment has been found in 10 percent to 20 percent of people older than 65, he noted.”
For people living with HIV over the age of fifty, cognitive impairment is a serious concern, and many wonder if occasional memory lapses and subtle forgetfulness are signs of normal aging or the first stages of serious cognitive impairment or dementia.
The article explains how diagnoses are made and strategies one can use to preserve cognitive functioning, including: medical management (when appropriate); lifestyle changes (such as reducing cardiovascular risk and blood sugar); practicing cognitive improvement exercises; and physical exercise.
To read the full article go to the New York Times.
I just got back from a wonderful trip to visit friends and family in Paris. It had been a long time since the last time I was there. 25 years. (It is hard to even conceive of that amount of time passing.)
While I was there I tried to live in the present: Take in the architecture; soak up the culture; sit in the cafes and experience the life of this timeless city. Underneath the surface, and without my conscious awareness, my mind was in the past. I was fantasizing about a life trajectory if I had never left Europe 25 years ago. And, those thoughts merged so seamlessly with my experience in the present that I didn’t even know that they were affecting my experience in the moment.
When I got back to New York, I went to see the film, “Midnight in Paris.” The spectacular cinematography transported me back to vacation. IMDB describes the film as follows: “A romantic comedy about a family traveling to the French capital for business. The party includes a young engaged couple forced to confront the illusion that a life different from their own is better.”
I identified with the main character who struggles with a tendency to live in an idealized past.
The film reminded me that living in the past is a theme that emerged from my research on aging with HIV. Throughout my interviews, the men talked about the past. In “Aging with HIV” I introduced you to “Paul” (not his real name.):
Entering Paul’s apartment is like going through a time warp. The walls are filled with photos of Paul and his friends in their twenties and thirties. All of his artwork and decorations are from the 1970s and 1980s. Even Paul’s moustache, his clothes, and the way he styles his hair are reminiscent of the clone look of the 1970s. During an interview with Paul I drew a line with one end in the past and one in the future and asked him to point to where he was. He said, “Right there. Oh, yeah, I’m in the past.”
After interviewing Paul, I saw more subtle examples throughout these men’s lives of the conflict between living in the past vs learning from the past. Living with HIV can reshape one’s sense of time. Life can feel as if it stopped with diagnosis, or the death of friends. And memories of a fun-filled past can be comforting when illness and age make life seem dull.
There is a lot to learn from the past. The act of reminiscing can help us live more fully in the present. When we reflect on our past we remember people and places that were important in our histories, and we remind ourselves of aspects of our identity that have been lost over time. Even painful emotions like loss and regret can be an important learning tools as we live in the present and look toward the future.
The challenge is to be able to learn from the past (reminisce and have our feelings) without living in the past (getting mired in regret or fantasy) in a way that prevents us from living our lives fully in the present.
The drift into the past can be quite subtle and sometimes we need a gently push to return to the present. One question we can ask ourselves is: How can these memories, thoughts and fantasies of the past help me with the issues I face today?
In his Op Ed for the New York Times, “The Death Sentence That Defined My Life,” Mark Trautwein shows us how not dying of AIDS “on schedule” has helped him learn “not to live life on one either.” His story offers insight into the financial, social, and medical challenges of living longer than expected.
My letter to the Editor, published yesterday by the Times discusses the delicate, and sometimes paradoxical, balance between finding your own schedule and getting back on track with life that accompanies aging with HIV.
You can follow the links to read both.
Linda Dahlstrom article for MSNBC tells one man’s story of aging with HIV. It is a touching and personal chronicle of the path so many gay men have had to travel from the trauma of diagnosis, living through innumerable losses, to facing the unanticipated social, emotional, and physical challenges of growing older.
For the full article go to: msnbc.com
On Memorial Day, the New York Times published an article by Dr. Lawrence Altman remembering the early AIDS epidemic of 30 years ago. His article poignantly reminds us of those desperate days when there was little scientific knowledge, and a great deal of misinformation, fear, and stigma. He memorializes those who died in the early years, for whom “the wait for effective treatments — a decade or so after the first reports of the disease — was far too long.” His report acknowledges how far we have come, yet does not deny the continued gaps in our knowledge and lack of progress made in developing an AIDS vaccine.
For me the timing of the publication of this article resonates strongly. The AIDS epidemic of the 80’s and early 90’s was a war that needs to be memorialized. A generation was lost to the disease and those that remain are scarred emotionally by the battle.
While it raises painful memories, Altman’s article offers us an opportunity to remind ourselves of what we have lived through, and to remember the friends that we have lost. I believe that the ability to reminisce is an integral part of healthy aging. This kind of life review allows us to learn from the past, not live in it, to draw on past experiences for life lessons and guidance to help us cope with challenges in the present. I am grateful to Dr. Altman for his work in the field of AIDS and for sharing his experience.
I walked past the elementary school and saw the teachers taking the kids out of the class to explore the neighborhood. I remember the feeling that started to set in this time of year. The weather is getting nicer; The school year is coming to an end; And, I just wanted to get outside and play. In the springtime I am reminded of the need to take time out of my schedule to play.
Play time is not just a luxury. Recreation is an integral part of a healthy lifestyle. And, being able to play is one of the 10 steps to optimal aging with HIV. Playful activities can keep us socially involved as well as physically, intellectually, and creatively stimulated – all of which can counteract stagnation and increase adaptation at midlife and beyond.
There are many opportunities for finding play time:
Organized sports can be great forms of play, when they are not taken too seriously, and are not beyond your physical capabilities. When you are involved in a strenuous sport you get much needed exercise and increase your endorphins. In team sports, such as basketball, you stay connected to others. You can play golf alone or with friends. And, bowling is a lower energy sport that can still work up a sweat. Even if you are not an athlete, you can find a sport that isn’t too intimidating. Jogging, rowing, bicycling, and kayaking are all independent sports that have meditative qualities. Less conventional sports such as ballet, ballroom dance, fencing, and yoga are all forms of play. Games such as cards, scrabble, and board games have the same opportunities for competitive activity, intellectual challenge, and socialization without the strain of physical activity.
Creative activities can be done alone or with others. Making art, writing, woodworking, and gardening are all creative activities in which you participate in making something new. Do you enjoy listening to music? Dancing to rock and roll or drums? Cooking, needlework, collecting? You can take a class to learn a new hobby or skill. Join an improvisation group. Care for animals. Any of these activities can broaden your sense of creative play.
If you need help developing your ability just spend time with a child. My biggest pleasure is watching a child who has just opened a present make a toy out of the box it came it. You can invent play from your imagination, too.*
There are many social clubs for gay and HIV positive people that offer ongoing recreation activities. Check out the list of resources on this site to find an organization near you where you can participate in an event or join an ongoing program. You can also take a retreat with organized activities. Blogger, Mark S. King has compiled a list of vacations and retreats (some at low cost) for people living with HIV. Follow the link to learn more.
Now, I’m going to listen to my own advice and get outside to enjoy a bit of this day!
*excerpt from Aging with HIV: A Gay Man’s Guide
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.
Once again, Stephen Karpiak, PhD, has forwarded me the latest research commentary from ACRIA (AIDS Community Research Initiative of America). In a review of the literature, Karpiak finds that the data is “conflicting and inconclusive.” The panel of experts concludes: “The jury is out as to whether HIV alone is a significant factor contributing to cognitive dysfunction or dementia. There are likely many other factors, some of which might be controlled to prevent or ameliorate cognitive decline.”
I have met many midlife and older people with HIV who are worried about dementia. While many people living with HIV may evidence cognitive impairment on tests, few have the diagnosis of dementia. There are many variables that may effect mental functioning, including: depression, socioeconomic variables, drug toxicities, trauma, other illnesses, and diet. HIV alone may very well not cause dementia and there may be many other treatable c0-factors that influence cognitive functioning in people aging with HIV. As new research on this issue emerges we will, hopefully, get more clarity on the relationship (if any) between aging with HIV and mental functioning.
“At last, the book we’ve been waiting for.” That is how Mark Thompson begins his review of Aging with HIV: A Gay Man’s Guide for Lambda Literary.
Mr. Thompson gives both a social and personal context for this statement. His review provides the reader with a description of the book’s contents, tone and relevance for people living with HIV. I was encouraged by the way he used the book to further a discourse on the subject of aging with HIV. Lets keep the conversation going!
To read the review go to lamdaliterary.org.