Second World Assembly on Ageing Madrid, Spain 8 -12 April 2002
HIV/AIDS and older people
"HIV/AIDS is a global problem of catastrophic proportions. The challenge is enormous, but we are not powerless to face it. That is why I have made it my personal priority to form a global alliance commensurate with the challenge."
- United Nations Secretary-General Kofi Annan
Twenty years after the first clinical evidence of acquired immunodeficiency syndrome was reported, AIDS has become one of the most devastating diseases humankind has ever faced. While most of its victims are young adults, the pandemic has had major consequences for older people as well. And the demands on older care-givers, especially in Africa, are particularly onerous. HIV/AIDS is a major area of concern for participants of the Second World Assembly on Ageing in Madrid.
Facts and Figures
At the end of 2001, an estimated 40 million people globally were living with HIV/AIDS. Unfortunately, however, the available data often do not include how the pandemic is affecting the older population. For example, although 83 per cent of all AIDS deaths in the world have occurred in sub-Saharan Africa, very little is known about the epidemiology of HIV/AIDS among older people in this region.
More information is available for developed countries. In the USA, 10 per cent of all reported AIDS cases occur among people over the age of 50, with a quarter of these over 60. More than half of the infected over 50 are of African-American and Hispanic origin, indicating greater risks among minority groups. In Western Europe, nearly 10 per cent of new infections declared between January 1997 and mid-June 2000 were among the over-50 group, with these figures dropping to 4.3 per cent in Central Europe and 0.7 per cent in Eastern Europe.
Older women appear to have a higher incidence than older men: during a recent five-year period the number of new cases in older women increased by 40 per cent.
But this information does not reflect at what age this population group was infected. Many of them may have had the virus for years before being tested. By the time they are diagnosed, the infection may be in its most advanced stages.
Older people living with HIV/AIDS
· The dominant risk factor among the 50-and-over age group is the same as for other age groups, and that is heterosexual sex. Specific risk behaviours, such as unprotected sex, multiple sexual partners, sexually transmitted infections and substance abuse are also present in this age group.
Implications of age
· According to the US-based Centers for Disease Control and Prevention (CDC), age accelerates the progress of HIV to AIDS and blunts CD4 cell response to antiretroviral therapy. Age-related conditions, such as osteoporosis, increase the risk of severe complications.
· Older people tend to view condoms primarily as a contraceptive measure, and women who no longer fear unwanted pregnancy may not insist on their use. A US study has shown that, compared with younger persons, only one-sixth of people over the age of 50 are likely to use condoms. Women also undergo physical changes with age that affect their vulnerability to HIV. In the post-menopausal stage, their vaginal walls are thinner and lubrication is often reduced. Many doctors believe older women are more vulnerable to vaginal trauma during intercourse, and are thus at greater risk of contracting HIV.
" [Older women] must be taught 'safe sex' practices. I don't want them to make the mistake I did and then join the increasing numbers of HIV-infected. It's no fun being 'senior' and living with the virus."
-Woman diagnosed at age 50
Delay in diagnosis
· Early symptoms of HIV infection - fatigue, poor memory, shortness of breath, sleeplessness and weight loss - may be mistaken for signs of ageing, thus preventing those infected from seeking early medical help that could help them stay healthy and prevent them from transmitting the disease to others.
· Health providers often fall into the trap of age stereotypes, which can be a problem in prevention and diagnosis. Health care workers are less likely to ask older patients about their sexual behaviour and do not provide the prevention information they would routinely offer younger patients. Nor do prevention education programmes target older people.
· Perhaps due to an increasing denial of sexual needs, social barriers to discussions on sexuality become even stronger with age - with the consequence that there are few effective strategies for this population group.
· Older people have less basic knowledge about HIV/AIDS and its prevention. In a CDC study of a hotline service, only 6 per cent of callers were from the older population, but of those, nearly half wanted more information about HIV/AIDS risks.
Older people must wrestle with issues not faced by the young person. They find themselves adjusting to the physical and emotional changes associated with ageing in the setting of a debilitating illness. In addition, coping mechanisms among older people are weaker, and they are more prone to depression and less inclined to join support groups.
A number of strategies and behaviours can help mitigate the risk of HIV for older people and lessen the impact of HIV/AIDS on those already infected.
· Reduce the stigma surrounding the sexual needs of older people and encourage them to discuss these issues with their health providers and families;
· Educate healthcare providers about the sexuality and sexual practices of older people to allow for improved communication and more accurate risk assessment;
· Integrate HIV programming into services for older persons, including secondary prevention education (prevention among HIV-positive people), into specialized care services;
· Educate HIV service providers on the need to provide age-sensitive services and the specific issues related to HIV in an ageing population;
· Identify areas of research specifically looking into the interactions between age and HIV;
· Involve older persons in research on prevention and care.
Older persons as caregivers
Being a caregiver for a child with AIDS is not the death sentence that developing the disease may be, but the burdens of care-giving for older persons are extraordinary. The rising death toll and the increasing numbers of AIDS orphans worldwide are having far-reaching health, economic and psycho-social impacts on society, particularly in Africa, and particularly on older Africans.
"I am so afraid of what the future has in store for these orphans. If I were to die and leave them, who would look after them?"
-62-year-old female caregiver, with 3 orphaned grandchildren
Of the 36.1 million people with AIDS in 2000, 70 per cent were in sub-Saharan Africa. And of the total number of children under the age of 15 years (13.2 million) who have lost their mothers or both parents to AIDS, the number is an even higher 90 per cent. Most of those infected with HIV are people in economically active stages of life (15-49); this loss of earning capacity only intensifies the burden on those who must care for them.
"Looking after orphans is like starting life all over again, because I have to work on the farm, clean the house, feed the children, buy school uniforms. I thought I would not do these things again. I am not sure if I have the energy to cope."
-65 year-old male caregiver, with three grandchildren
In Africa and other regions with poor health infrastructure and social protection, the burden of caring for chronically and terminally ill patients usually falls on the family. Evidence suggests that this burden is borne primarily by older women in an environment that has been ravaged by armed conflict, famines, and massive population displacement and migration, in conditions of extreme poverty, stigma and lack of support. The burden is immense. And in most cases they provide this care with little or no state or other support. In fact, they are probably being deprived of the support of adult children that they had expected to rely on in their old age, as these adult children are the ones who are dying.
The health of the "older caregiver" itself has taken a heavy blow. Older people are suffering under serious physical and emotional stress, and in some cases physical violence, stigma, and abuse resulting from witchcraft accusations.
So far, and paradoxically, this burden on older people has received little attention in discussions on policy and programme development to support AIDS orphans. The crucial role that older people play in the care of AIDS orphans is seldom given recognition or support and their health, economic and psycho-social needs are often neglected. Yet they continue to try to cope with the double burden of caring for their dying children and their orphaned grandchildren, often without even the most basic resources to do so.
"The situation is very desperate. I am now forced to sell illegal drugs to raise money to feed the orphans. I am no longer afraid of going to jail."
- 59 year-old female caregiver, with six orphans
The Ageing and Life Course programme in the World Health Organization has initiated a project to examine the impact of HIV/AIDS on older caregivers in four countries in Africa: Zimbabwe, Ghana, South Africa, and Tanzania. The main focus of the project is to identify barriers that prevent older people from providing adequate and fulfilling care to their children dying from HIV/AIDS, and subsequently to their orphaned grandchildren. Its purpose is to lead to the development of policies and programmes that would sustain older people as key assets in care of the terminally ill patients and orphaned children.
Areas of need
The project identified some major problems faced by older care providers:
· Loss of economic support, particularly the loss of remittances from their sick/dead adult children;
· Lack of access to basic needs such as food and clothing;
· Limited access to and utilization of health care services due to transport difficulties and the high cost of services;
· Financial hardships leading to inability to pay for medical or school fees;
· Negative attitudes of health workers towards the older care providers, both as older persons and as people living with HIV/AIDS;
· Stigmatization of the disease by the community and by service providers;
· Physical and emotional stress resulting from increasing levels of violence and abuse (often as a results of witchcraft accusations).
Strategies for change
Findings in Zimbabwe
Of a sample of 810 heads-of-households who were identified as providing AIDS-related care in Zimbabwe, 685 were 50 years of age or older. Of those, 84 per cent were the main care providers for people living with AIDS and children orphaned as a result of AIDS deaths. 71 per cent of these care-givers were female, and 29 per cent were male. In these same households, 40 per cent of the household members were children orphaned by AIDS, and most of these orphans (80 per cent) were the grandchildren of the older caregiver.
Key areas for policy and programme intervention include improving access to and utilization of services, and providing economic or income support to older people affected by HIV/AIDS.
A number of strategies and behaviours can be adopted to support the general capacity of older people to look after the sick and the AIDS orphans.
· Promote, maintain and improve the health of older persons, especially those with care-giving responsibilities;
· Provide older people with education and information on HIV/AIDS and related care issues;
· Provide psychological support and counselling for all care providers - health care workers and home-based caregivers;
· Reduce the double stigma (AIDS-related and ageism) and other prejudices among health care workers - particularly through training and education;
· Develop policies and initiatives to strengthen the capacity of older caregivers - such as economic support in the form of subsidies and education;
· Provide additional resources for the caregiver, including housing, medical care and food.
The burden for Africa's older people
As a result of a lifetime of hardship, malnutrition, poverty and, in older age, a high risk of chronic diseases, older people in most African societies are a vulnerable group. The AIDS pandemic is now posing an additional burden on them, further increasing their vulnerability. In their old age, when they may need support and expect to be looked after, many of them may have to take on the role of caring for others, in most cases without even the basic necessary resources. Thus, their health is the most precious asset not only to them, but also to their families and communities. Lack of economic, social and psychological support combined with the inaccessibility of health services threatens their ability to provide the care expected from them. All efforts must be made to support and address the vulnerability of these older people, not least because it is they who are rearing the future adult generation - Africa's future human capital.
Improving quality of life
The HIV/AIDS pandemic is having a heavy impact on older people. Both the infected and the caregiving older person struggle with limited resources and the stigma associated with the disease.
The ultimate goal is to improve the quality of life for both groups. The best way to achieve this goal is to improve advocacy and support. Improved education for medical professionals, older people, family members and society as a whole is also essential. Governments, NGOs, academic institutions and other organizations can act as facilitators through their programmes, projects and policies.
This article is based on contributions from the Joint UN Programme on AIDS (UNAIDS) and the World Health Organization (WHO).
For further information, please contact:
World Health Organization
Dr Alexandre Kalache
Tel: (+41 22) 791 34 04
Robert de Graft Agyarko
Tel: (+41 22) 791 34 33
Project Web page:
UN Department of Economic and Social Affairs
Tel: (1-212) 963-0500
Development and Human Rights Section
UN Department of Public Information
Tel: (1-212) 963-0499
Published by the United Nations Department of Public Information DPI/2264 March 2002Back to Table of Contents