Tag Archives: aging

National Resource Center on LGBT Aging

 

 

 

 

 

I wanted to acquaint you with a new resource for gay and lesbian aging that I am personally very excited about.  According to their website: “The National Resource Center on LGBT Aging is the country’s first and only technical assistance resource center aimed at improving the quality of services and supports offered to lesbian, gay, bisexual and transgender (LGBT) older adults. Established in 2010 through a federal grant from the U.S. Department of Health and Human Services, the National Resource Center on LGBT Aging provides training, technical assistance and educational resources to aging providers, LGBT organizations and LGBT older adults.

It is truly remarkable that the US government is funding a program geared to improving the services and supports of the LGBT aging community.  I have worked in this field for decades am encouraged by this sign of support for what has historically been an underserved community.

I have been told by the organization leadership that they intend to develop programs for the HIV positive aging community, and I will be submitting an article to appear on their website.  Currently they have articles and resources of interest to the LGBT aging community on their website.

 

 

 

 

 

 

 

Advertisement

Aging with AIDS: More are living longer, living with loss: MSNBC

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

Illness More Prevalent Among Older Gay Adults: New York Times

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 high blood pressure, diabetes 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 H.I.V. 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.

New Group for Gay Men in Midlife

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:


A Good Night’s Sleep

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.

World AIDS Day

We are at the end of the third decade of the World AIDS epidemic.  The disease has impacted the lives of people throughout the globe and reshaped societies.  Today the epidemic has a very different meaning in the developed world than twenty-nine years ago.  Because of advances in the treatment of HIV disease, Aging is now THE issue in the United States.  Not only are people living longer than expected, but by 2015 the majority of people living with HIV in the US will be over fifty years old.  The aging of HIV means that we need to develop new policies and treatments for the disease.  People living with HIV must adapt to the challenges of growing older and develop new mindset of Optimal aging with HIV.  To read my World AIDS day article for Edge magazine follow this link – Edge magazine.

SAGE conference update

Last Saturday Dr. Stephen Karpiak and I spoke at the SAGE National Constituents Conference, The Future of Aging is in Our Hands! Our workshop, “Aging with HIV: The Complications for Success,” was well attended by a mix of people, including gay men living with HIV, activists, and social workers from the LGBT community.

Dr. Karpiak presented the background statistics, using graphs compiled from CDC and other data, which clearly and dramatically demonstrated the magnitude of the issue. People over fifty make up a large and growing segment of those living with HIV. He also presented the findings from the ROAH study from ACRIA on HIV Over Fifty. The data gives a picture into the psycho-social issues faced by this group. Particularly striking to me was the multiple co-morbid conditions (issues including depression, physical illness, financial limitations, lack of social support) that impact the lives of people living with HIV over age fifty.

Dr. Karpiak shared his evaluation about the workshop with me: “It is always reinforcing to see research data supported by the observations of the clinician. This was clearly the case at our dual presentation at the SAGE Meetings this past weekend. ACRIA’s research on the older adult with HIV (ROAH) describes a population who are long-term survivors in the HIV epidemic. They have had to develop different coping strategies as they shifted from the expected short life following an HIV/AIDS diagnoses to a long life span due to effective drug treatment. And now they face another challenge. At age 50-60 they are developing multiple age-related disorders that would typically be seen in 75+ year old adults. We know that successful aging is achieved when the person has support from their social networks – caregiving. But the older person with HIV, like the older lgbt person, is largely without traditional family networks from which most caregivers are derived. They cannot fight this next challenge alone. How will our community respond to this need? Will they respond ?”

For my part, I focused on what we know about aging from the gerontological literature and the unique concerns I identified in my research on HIV over fifty. People over age fifty living with HIV face many of the same challenges of aging as those who are HIV negative. However, HIV complicates the picture in a number of ways, including, but certainly not limited to, symptom ambiguity – the difficulty determining whether an ailment is age or AIDS-related. After presenting the challenges faced by people aging with HIV, I presented some of the solutions found in the gerontological literature to help people optimize their experience of aging.

The workshop included a lengthy group discussion in which audiences members shared their experiences, challenges, and what works for them. It was exactly the type of conversation that I advocate for in Aging with HIV: A Gay Man’s Guide, to empower people to define Optimal aging with HIV for themselves.

Public Policy on Aging with HIV

A reader, Loren M., recently completed a course on public policy in Aging with HIV at San Francisco State University, Gerontology program.  He has researched the issues around Aging with HIV, and has shared the result of his studies.  For a report on Aging with HIV Policy go to my post – Aging with HIV Goes to the White House and read his comment.

Thanks Loren M. for sending that information to us!

The Lazurus Effect

I was recently asked by a reader of Aging with HIV: A Gay Man’s Guide to comment on the term the Lazarus Syndrome. This man, a gay man living with HIV in middle age himself, wondered why I don’t refer to the term in my book and why it seems to be out of favor in the field. I thought it was a very interesting question, and I thought I would share my response with you.

You raise a very interesting point. I, too, remember when the term, “Lazarus syndrome” was used by researchers, clinicians, people living with HIV, and the media. With the introduction of protease inhibitors some people with HIV found a new lease on life. (I say, “some” because I knew many people for whom these early advances were not helpful. There continued, and continue, to be deaths to AIDS and many experienced debilitating illnesses and side effects even with the advent of HAART.) But, people were surviving, and for many this felt, as you put it, “miraculous.”

I think the term, Lazarus syndrome, emerged to describe the experience of people who, spared from imminent death, had to concern themselves with the challenges of living with HIV. In retrospect, I see how using that term helped people put a name to the feeling that they had lived longer than expected, and, having identified themselves as survivors, could then set out to “live” with HIV.

I am not sure, however, what the “syndrome” was that the term was meant to describe. Doctors use the term “syndrome” to identify a collection of symptoms that occur together. I don’t believe a syndrome was ever identified in people living with HIV who had survived longer than expected. Perhaps, that is why the term has fallen out of favor.  I have also read the term Lazurus Effect, which seems to me more accurate.

Instead of one “syndrome” we see several dynamics impacting people living with HIV. Concerns related to managing chronic illness, stigma, depression, financial concerns, survivor guilt, etc. have all been studied, but, as far as I know, there is not one clinical picture of people living with HIV.

And, now, a whole new set of issues are arising as people are facing the unanticipated challenges of aging with HIV – which is why I wrote the book.

So, my long winded response to your question is, yes, the Lazarus effect, is still a concern. However, in my opinion, the longer people survive with HIV and the virus evolves into a chronic illness, the term will only describe a part of an increasing complex picture of what it means to live with HIV.

Do you think the “Lazarus Effect” accurately describes the experience of living with HIV today?

Aging with HIV Goes to the White House

I just received an update from Dr. Steve Karpiak from ACRIA about the White House meeting on aging with HIV held last week. Dr. Karpiak was among the 100+ invited attendees at this meeting to “raise awareness about people who are aging with HIV or contracting HIV as seniors (>50 years of age); to explore unique clinical manifestations of HIV infection among 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” according to the White House Office of AIDS policy. There is a link on this page to a youtube video of the meeting.

Here are some observations Dr. Karpiak made of the event:

Education –  The need for those in the world of HIV/AIDS and those who work in the Aging universe to know about the increasing number of older adults living with HIV. The epidemic is no longer young only! In fact it is now old – mostly!

Research – This is a given. Research dollars are always scarce, but the need to address this issue is now growing at a rapid pace. Many spoke about ACRIA’s seminal 1000 person study ROAH (Research on Older Adults with HIV) illustrating that community based research can significantly affect the dialogue.

Health  Outcomes – There is a need to assess bottom lines – health outcomes. What works – what does not work –  and move forward using evidence based information and not conjecture and anecdotes,  or,  providing services that makes everyone feel good – except the client.

Prevention   – There is a vacuum. No systematic evidence based prevention effort targeting older adults (HIV negative or positive) has ever been developed for the over 50 populations – emphasis on the S. Prevention messages for the 50-60 year old are likely very different than those for the 70+ group! ACRIA has much to share with 3+ years experience n developing such initiatives in NYC (funded by the New York City Council) and across the US (funded by the MAC AIDS Fund).

Isolation – Acknowledgement  by almost every person who spoke in the room that the older adult living with HIV is socially  isolated due to the toxic forces of stigma which contribute to their high rates of depression, substance use and poor mental health management.

Power – The power of  the voice of the  peer PLWHA over 50 is unquestioned. There were community members, ASO staff, people of faith communities,  and government staff who were HIV+ and over 50, some LGBT – their bearing witness is potent.

Partnerships – The HIV world must collaborate with the Aging world. Those in HIV/AIDS cannot ignore the massive knowledge and experience of those who work in Aging. Time and resources will have been wasted unless there is collaboration from both domains. ACRIA is unique in that it has done this for the last 8 years.

Thank you Dr. Karpiak for sharing your thoughts.  I will continue to pass on more information about the event and of any policy changes that emerge as a result.

%d bloggers like this: