In a recent article for the American Society on Aging, Nathan Linsk, considers the issues faced by older adults as the significant challenges for the fourth decade of HIV. The article discusses the physical and emotional challenges long term survivors face as they live longer than ever expected. Linsk summarizes recent research developments in the field, offers links to articles, and lists resources available.
To read the article go the the ASA website.
It has been an exciting year since the publication of Aging with HIV: A gay man’s guide. I have met a lot of great people around the country and overseas who are keeping conversations going about the challenges of aging and how people living with HIV can define optimal aging for themselves.
There have been many developments in the field: SAGE developed a policy paper on Aging with HIV; There was an historic White House meeting on HIV and aging; Interesting findings were discussed at the Baltimore Conference on HIV and Aging, the SAGE constituent conference and the 2nd Annual Conference on HIV and Aging in Austin; The HIV and Aging Group built community on Facebook; The National LGBT Aging Resource Center was created; Clinical Guidelines for Medical Management of HIV and Aging were released; and Caring and Aging with Pride published its report on LGBT Aging in the United States.
Aging with HIV was discussed in print and on the web: I talked with Mark S. King on MyFabulousDisease.com; The Philadelphia Gay News; The New York Times; Edge Magazine; And, the book was reviewed in The Bay Area Reporter, Lambda Literary Review, and The Gerontologist. And, I’m looking forward to the publication of an interview with Neal Broverman in next month’s Advocate.
It’s been quite a year!
I am looking forward to keeping you posted on new developments in the field. Aging with HIV is an expanding field. I am hoping that readers continue to share insights, information, and personal stories with me, so that I can pass them on to the community and keep the conversation going in 2012.
Caring and Aging with Pride, the first national federally-funded project to examine LGBT aging and health, recently released a report of its findings. The study included a national community-based survey of over 2,500 LGBT older adults from diverse walks of life. This research provides a “historic new window into the health and lives of LGBT elders in America.”
The report is comprehensive and examines several areas of older people’s lives, including: Physical health, mental health, healthcare access, health behaviors, services/programs, HIV disease, and caregiving. From their intensive research this group of recognized scholars conclude that LGBT older adults are a “resilient yet at risk population.”
Some key findings illustrate the complex reality of LGBT aging in America. In the 88-page report a few statistics were particularly disturbing to me. Respondents reported high rates of loneliness, disability and depression, and fewer social supports than found in the general, non-LGBT aging population. Most had been victimized at some point in their lives, and many had been victimized multiple times, because of their perceived sexual orientation or gender identity. The participants reported significant barriers to accessing health care, including discrimination, receiving inferior care, and inadequate care from providers who they can not “come out” to or who are insensitive to LGBT issues.
Yet, there were findings in the report that point out the strengths of LGBT older adults. Many were involved in their communities and engaged in wellness, as well as physical activities. They were contributing members of their communities and have distinct networks of support consisting of peers, partners and friends. And, a large majority feel positive about belonging to the LGBT community.
The report concludes with a strong call to action that addresses steps we can all take in the areas of policy, services, education, and research.
I am excited and encouraged by the breadth and quality of this research. This project represents a significant step in addressing the needs of Lesbian, Gay, Bisexual, and Transgender older adults. The findings will help researchers, policy makers and service providers, like myself, do our jobs more effectively.
I encourage you to go to the Caring and Aging with Pride website to read the full report or to view the brief Executive Summary.
Last week the American Academy of HIV Medicine, the American Geriatrics Society and the AIDS Community Research Initiative of America (ACRIA) published recommended treatment strategies for clinicians managing older patients with HIV. This is a major step in the medical treatment of HIV recognizing the unique and complex medical issues faced by this growing population. It is the first time best practice guidance has ever been developed for HIV practitioners and other health care providers who treat diagnose and refer older patients with HIV disease.
The report contains specific guides provided for Diabetes, Cancer, Hypertension, HepC etc. as well as HIV testing and Sexual Health and more. While it is directed at practitioners, people living with HIV may want to familiarize yourselves with the recommendations and discuss their relevance to your care. The full report is 76 pages, but an executive summary outlines the treatment recommendations in each area.
To view the overview, executive summary, or full report go to the American Academy of HIV Medicine webpage.
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.
Mark S. King attended the 2011 ADAP Advocacy Association conference July 5-7 in Washington, DC and reviews the event on his blog.
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.
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.