Positive Life NSW

This fact sheet has been developed from a series of discussion groups on growing older and living longer with HIV. All names have been changed.

People with HIV discussed ageing and its potential medical, personal and social implications. They reflected on issues including health strategies, peer support, friendship networks, social participation, ageing and sexuality, non HIV related health conditions and decisions related to ageing in general. The delivery of culturally appropriate services to an ageing population of people with HIV provided another focus.

Little is known about the health and social needs of HIV positive people growing older with HIV but also the effects of HIV on ageing – or of ageing with HIV. Growing older presents new challenges whatever your serostatus. For gay men – and the majority of people with HIV in Australia are gay identified men – there is the additional challenge that there is no readily available road-map to growing older.

As a culture, we don't celebrate maturity and nor do we collectively offer much evidence of its existence. This factsheet aims to provide some insight into how HIV positive people experience ageing and living longer.

Dan: We're the first group of people getting to old age with HIV and not enough is known.

James: Part of the wisdom of getting older is that you value qualities in people that you identify with. It's also about not putting up with crap. For me, maintaining balance in my life is probably the best thing I can do. For many years my life was out of control and now the treatments have stabilised things and people are now saying this is a manageable, controllable long-term illness.

Growing older with HIV has both benefits and challenges. Benefits include: the advantage of maturity and experience (with age comes understanding and greater respect for health and life); with age can come patience, contentment and moderation, and older people can focus more their own needs. Challenges include: social isolation; discrimination; loss of friendships from early on in the epidemic, planning a future; long-term and accumulated grief and loss; ageism and inter-generational divisions (e.g. combating stereotypes). For many the effects of poverty were seen as a challenge. More broadly there was a desire to address the invisibility of older people and its associated psychosocial problems.

The HIV Futures 3 and 4 surveys reported people with HIV who are over 50 are much less likely to be accessing services than other HIV positive people in younger age groups. They are more often dealing with the issue of social isolation, and experience a more limited range of social and emotional support, and are less likely to be in a relationship or having sex. However, those over 50 were less likely to report a mental health condition than those under 50, with 25% of those surveyed having been diagnosed with one (86% of these had been diagnosed with depression).

Almost half (53.1%) reported a major health condition other than HIV (including cardiovascular conditions, diabetes, arthritis and back pain), and also reported higher rates (38.4%) of hepatitis B than positive people under 50 (but lower rates of hepatitis C coinfection). 1 HIV Futures 3 and 4 contain significant pointers to areas of much needed Health Promotion work.

Managing change and taking control

‘Normalising’ the experience of HIV

Discussion group participants expressed a need to ‘normalise’ HIV by having opportunities to discuss their experiences with others. They reflected on the importance of having links with other people, whether it is through something official like a group (peer support) or to the old friendships that people have had.

Greg: Create opportunities to meet new people. I see that there are practical things that I can do but there are also other things, which will be very beneficial such as peer support and activity such as volunteering. But what happens when the old network of friends is no longer around? For many the experience of losing friends and partners during the 80s and early 90s left a void. The prospect of developing new social networks was a daunting one.

James: I can remember when I lost my very best friend in 1989. When he passed away there was this enormous void in my life. It took me about five or six years before my life got back on track again. I just became a recluse: I would not go out. I wouldn’t do anything. I just wanted to die myself. I didn’t know how to go out and mingle and socialise. I think there’s still a lot of sadness around our losses. People don’t want to be reminded about that now: there’s a silence.

Tim: I lost a lot of friends from the past, lost long-term friendships, which I valued because of the history. What happens when there’s a lack of those old friends? How do you deal with this loss and how do you make new friends? Volunteering and coming to groups like this can help.

Counseling was seen as another option: This is how John put it:

A counselor made a very sensible suggestion: he’s booked me into a visit because he thinks as a single, older gay man, I should have access to somebody that I can talk to once a month if I want to talk about problems. I think that’s an excellent idea because sometimes there are things that I wish I could talk to somebody about but I don’t want to pester my friends or it’s not appropriate that I should talk to them.

For many, HIV is not the most important and defining factor in their lives. In normalising the experience of HIV they reflected on the importance of not making HIV the focus of their formal and informal social networks. This is how Richard put it:

We’ve got a group where we meet on a weekly basis. The exchanges you have in a group like that are really useful. I consider these people as part of my friendship group: people you can talk openly to about anything. We don’t always discuss health issues or HIV and I think that does a lot for the network we have. Our lives are more than HIV.

Planning for the future means planning differently

Acquiring HIV was seen as a death sentence before the introduction of highly active antiretroviral therapy (HAART).

Treatment options were very limited. While a few “got on with their lives”, others decided to focus on quality of life issues. Some sold their assets, cashed in life insurance and super and did as much as they could in what they thought was a shortened life.

With the introduction of HAART the options for people with HIV changed dramatically. This meant having to adjust to a new way of living with HIV and using their new found health from improved treatments to find new directions and opportunities. There was a dramatic shift from planning short term to planning for a future with little information available on how to do this.

This is how Terry, Brian Robert and Richard expressed it:

Terry: We were given our lives back but no one told us how to plan in the long-term. I was diagnosed in 1986 and I can see now that everything was short term. I didn’t plan ahead. I thought I’d be lucky to be here in ten years. I would never have dreamt of being alive now. I’m finding that my body is now ageing. However, the short term planning meant I didn’t plan in a structured way to be doing things like other people might be doing, like downsizing or buying a house down the coast and eventually retiring there. It’s not the sort of planning a person whose health was not okay would be doing.

Jim: A positive is I have health checks on a regular basis where I wouldn’t have if I were not HIV. You know I’m quite happily health resourced.

Richard: I’ve been very lucky: I haven’t had any significant HIV related illnesses. When I got the diagnosis I’d already begun a subtle shift and I gave away my career. I changed to working part-time and study. For the last 19 years I haven’t had longer than a two year plan. Someone asked me last week my goals for the next five years. I actually can’t think that far ahead.

Brian: When I got diagnosed I panicked and took all my money and spent it. So now I have to live with the consequence of that. That’s one thing that you have to live with the consequence of knowing at one stage you were going to die and the next stage you’re not. Yes, learning to live. I’ve survived twelve years.

Robert: It created for me a time warp. I was leading my life as per normal and from the point I was told that I was HIV my attitude towards life changed. I knew that I might not live to 30 but I had to do the very best I could. I worked and I also struggled to maintain a positive attitude to keep on living. Then there came a time when I went on disability support and so I had to leave the workforce. Once you leave the workforce you leave that world behind you. You enter another world. You’re seeing another totally different social world. You’re seeing the hospital and clinicians.

For some, growing older with HIV means planning or structuring life differently to adjust to the physical and emotional changes associated with ageing. This is how Tony explained it:

I always have books from the library to read and I always have tapes to watch. I always have food in the refrigerator. So if I choose to stay at home and do nothing because I am tired or not well I’m organised. I’ve got a book to read or a tape to watch, food to eat. I don’t think I ever planned like that when I was younger. I always used to open the fridge and it would be empty so I’d have to go out.

Having an intimate and sexual life

Intimacy and sexuality are important expressions of who we are and how we express ourselves. HIV positive people reflected on the importance of acknowledging their sexual and intimate lives and participating in discussions with peers on how these might change through ageing. Some went through a period when sex is less or more important while others expressed a desire to think more broadly about what sex means for them.

John: It is very beneficial for me to have more of this type of discussion on sex and intimacy. Because it’s very informative to hear what other people are thinking, what other people’s experiences are. Dealing with these issues you do need places like this where people can come and be comfortable and not be judged.

Greg: I’ve found as I’ve got older sexuality covers a lot of things and not just sex. It covers affection, intimacy, touching and being touched. Having somebody to care about and somebody who cares about me is important.

Stephen: Well I’ve always celebrated getting older. I look at getting older as a positive because with age comes experience and we evolve and we grow and life just tends to become a bit easier. My sexual needs have also decreased or modified. The urges are not as great as what they were when I was in my 20s and 30s. I’ve been HIV for 20 years now and it didn’t affect my meeting people socially.

For Michael body shape change because of treatment side effects made him feel ‘different’ and ‘unattractive’. Poor body image and self-esteem became an obstacle to relationships and sexual intimacy.

You can be HIV and not look HIV: You can be HIV and you can look HIV. When you look HIV it ‘s a totally different ballgame. My sex life’s gone. They take one look at you, judge you and move on. It’s not the age; it’s not being HIV; it’s looking HIV. Lipoatrophy is what has actually killed me. It’s the only thing that’s actually made it obvious that I’m HIV.

What is HIV-related and what is ageing-related?

The complexities of daily living now for many people with HIV include interactions between growing older, living longer with HIV and being on treatments longer. High numbers of positive people are also living with more than one health condition in addition to HIV.2

Greg: I’m not sure what’s HIVrelated and what’s ageing-related as far as wellness goes. I’m over 50 now so there are certain things that the general population would experience health-wise. So it’s hard to know because you’re HIV whether it’s HIV-related or aging-related. And now that, I’m on medications and the medications work for me, as far as my doctors are concerned it doesn’t look like I’m going to have an HIV problem as such.

We know that some specific risk factors are associated with growing older with HIV. There is evidence to support the theory that both HIV infection and combination therapy increase cardiovascular disease risk, and older age has been associated with an increased risk of cardiovascular disease. Liver disease is also a concern, particularly where HCV co-infection is present. Bone density changes are a potential concern as indeed is a potential increase in a variety of carcinomas – anal, skin and Non-Hodgkin’s lymphoma.

Cognitive function can be an issue for some people as they age. Depression, lower testosterone levels, and alcohol and drug use can all affect mental functioning. However, these factors can be dealt with by specific interventions.

Acting early to treat depression, sleep problems and any drug, alcohol issues, may help to reduce long-term harm. Stopping smoking, cutting back on alcohol, a healthy diet and exercise, and maintaining an interest in life can all have an effect on your health and wellbeing.

Richard: I’m over 50 … There are certain things that the general ageing population would experience health-wise. So it’s hard to know because you’re HIV whether it’s HIV-related or aging-related.

Acting early to treat depression, sleep problems and any drug, alcohol issues, may help to reduce long-term harm. Stopping smoking, cutting back on alcohol, a healthy diet and exercise, and maintaining an interest in life can all have a remarkable effect on your health and wellbeing.

Chris: The most important resource I have is me: I’m the one that motivates me in the morning. I’m the one that takes my medication. I’m the one that turns up to appointments. I’m the one that keeps records of what’s happening. Support services are useless if I’m not willing to take them up. If I don’t seek out what I need then nobody else is going to do it.
You have to take responsibility. There’s also pride in me being my own person.

George: When I was first diagnosed I moped around with depression for three or four weeks. Then I decided HIV wasn’t going to ruin my life. I’ve still got the same attitude today. I’ve got three kids, two grandkids and two more on the way. I’ve got plenty to look forward to so, I’m not going anywhere. I’ll just keep on keeping on.

Robert: I’ve got more hobbies I can focus on. I’ve got enough to keep me going for about the next 40 years. I’ve joined a senior citizens bike club. I’ve still got my surfboard, which I don’t use very much. I’ve given up crawling under repairing cars because I’m a bit too old for that. I get on with life. I’ve got too many things to do to stop and feel sorry for myself. I wake up in the morning and I think I’m alive, that’s a good start.

Delivering appropriate healthcare

Another concern is the delivery of services to an ageing population of HIV positive people. One way to address this is the implementation of training programs to raise awareness and to support service providers to develop culturally appropriate programs and interventions.

Greg: We’re the first group of people to age with HIV, or one of the first groups. The people that we have as our doctors and medical teams, supporting us now, are they still going to be there in 20 years? Are we going to be educating another group of health care professionals? I think we need to recognise the importance of educating the next generation of healthcare workers.

To maintain your health and quality of life here are possible areas to look at:

1. Talking to your GP, HIV specialist or a counselor can help you to prioritise what is important for you to maintain quality of life.
2. Eating well and getting exercise can help in managing responses both physically and emotionally. Check out your local community health centre for lifestyle programs such as walking-groups, exercise classes and other activities.
3. ACON has developed Healthy Life +, a twelve week gym program for HIV Positive gay men based on exercise, general health and diet. Phone ACON to find out when the next program starts or ask for a copy of the accompanying booklet.
4. The Positive Access Program at FitXGym (ACON) is a program exclusively for HIV positive clients. This program offers positive people an opportunity to exercise in a comfortable and supportive environment. You can work with a fitness instructor to develop your own program. Call ACON (02) 9206 2000 or Ingrid Cullen
5. on 0400 712 964.
6. Contact the Positive Living Centre or the Sanctuary for information on their lifestyle enhancement programs (e.g. yoga, exercise, nutrition). Call (02) 9699 8756
7. Acting early to treat depression, anxiety and sleep problems may reduce long-term harm.
8. Talking with another HIV positive person can help.
9. If you are concerned about your finances or in need of assistance, you can get help with financial planning as well as direct assistance from Bobby Goldsmith Foundation (BGF). Call (02) 9283 8666 Freecall 1800 651 011 or visit www.bgf.org.au
10. Having a Seniors Card can help you enjoy leisure activities and other services at reduced cost (e.g. museums, cinemas). Some vets provide discount services for pet owners with a Seniors Card.
11. Volunteering can help you to meet people and keep your mind and body active. Regular activity is one of the best ways to help stay mobile and independent.
12. Consider possible changes to your mental health and loss of physical control. This may include looking at Power of Attorney, guardianship, living wills and so on. Contact HIV/AIDS Legal Centre (HALC) for information. Call (02) 9206 2060 Freecall 1800 063 060 TTY (02) 9283 2088
13. Keep a positive attitude and an active mind. Some people find reading, learning a new skill, doing voluntary work or a new hobby help.

For support and information

• Department of Ageing & Disability (DADHC) T (02) 8270 2000 TTY: (02) 8270 2167 (for people who are deaf) Email: info@dadhc.nsw.gov.au or visit http://www.dadhc.nsw.gov.au/DADHC.htm
• AIDS Council of NSW (ACON) A health promotion organisation based in the gay, lesbian, bisexual and transgender communities with a central focus on HIV/AIDS. Services and programs include: home care, counseling, subsidised vitamins and, care and support network. T (02) 9206 2000 or Freecall 1800 063 060
• Positive Living Centre (PLC) Provides a range of structured programs, special events and social activities as well as peer support and health promotion programs for people living with HIV/AIDS. T (02) 9699 8756
• Albion Street Centre Nutrition Department Customised services for healthcare workers and people affected by HIV/AIDS and Hep C: Counseling, education, training, international project development. Dietician T (02) 9332 9600 or visit www.sesahs.nsw.gov.au/albionstcentre/clinical/nutrition
• Albion Street Centre Psychology Unit 9am–7pm, Mon–Fri Psychology Unit Manager T (02) 9332 9600.
• Bobby Goldsmith Foundation (BGF) Provides practical, emotional and financial support. T (02) 9283 8666 Freecall 1800 651 011 or visit www.bgf.org.au
• Positive Life NSW. A non-profit community organisation representing the interests of people living with HIV in NSW. T (02) 9361 6011 or Freecall 1800 245 677
• The Sanctuary Newtown offers massage, shiatsu, meditation, yoga and social activities. T (02) 9519 6142 (Mon–Fri by appointment).
• FitXGym The Positive Access Program offers positive people an opportunity to exercise in a comfortable and supportive environment. T ACON (02) 9206 2000.
• HIV/AIDS Legal Centre (HALC) for free legal service. T (02) 9206 2060; Freecall 1800 063 060 TTY (02) 9283 2088; email: halc@halc.org.au or visit www.halc.org.au
• The Centre for Volunteering T (02) 9261 3600 (Mon–Fri 9am–4pm. Email: info@volunteering.com.au or visit www.volunteering.com.au
• Welfare Rights Centre T (02) 9211 5300 or Freecall 1800 226 028.
• Gay and Lesbian Counselling Service of NSW (GLCS) A telephone counselling & information line operates seven days a week, from 5.30pm to 10.30pm. In the Sydney Metropolitan Area or from outside of NSW, call T (02) 8594 9596: Outside of Sydney Areas call: 1800 18 GLCS; (1800 18 4527).

For regional NSW HIV/AIDS and related services:

• Contacts: A Directory of Services for People Living With HIV/AIDS. Available from Positive Life NSW. T (02) 9361 6011 or Freecall 1800 245 677

References

1. J Grierson, R Thorpe, M Saunders and M Pitts (2004) HIV Futures 4: state of the [positive] nation, monograph series number 48, The Australian Research Centre in Sex, Health and Society, Latrobe University, Melbourne, Australia. Futures is a survey of HIV+ Australians conducted every two years. It is: self-completed; mail-back; anonymous; national; non-clinical. For more information www.latrobe.edu.au/hiv-futures/positive.html
2. For more details on the information contained in this paragraph see M. Pitts, J. Grierson and S. Misson. ‘Growing Older with HIV: A Study of Health, Social and Economic Circumstances for People Living with HIV in Australia over the Age of 50 Years’, AIDS Patient Care and STDs, July 2005, Vol. 19, No. 7: 460–465.

Contact Positive Life NSW for other fact sheets in our series:

1. Managing side effects –efavirenz
2. Boosting your energy;
3. Getting started on combination therapy
4. I want to return to work
5. Living with body shape change
6. Positive pregnancy
7. Clinical trials
8. A night with tina – methamphetamine & HIV
9. HIV and your mouth
10. The dynamics of disclosure
11. What you need to know about syphilis
12. Changing horizons: living with HIV in rural NSW
13. Surviving the Centrelink DSP Review

Produced by the Health Promotion Unit of Positive Life NSW Inc.

Copyright © 2005 Positive Life NSW. This information may be copied for personal or organisational use provided you acknowledge Positive Life NSW.

Funded by NSW Health

This fact sheet was produced with the assistance of an unconditional grant from Gilead Sciences Pty Ltd.

This is only an extract of the text from this fact sheet; use the links at right to obtain the full content.