The impact of HIV/AIDS on older people

Over the last decade, the HIV/AIDS epidemic has had devastating economic, social, health and psychological impacts on older women and men, especially in Sub-Saharan Africa. International statements such as the UN Declaration of Commitment on HIV/AIDS and the Madrid International Plan of Action on Ageing explicitly commit governments to addressing the particular needs of older people affected by HIV/AIDS. Yet the impact of HIV/AIDS on older people remains under-reported, and has not been properly addressed.

HIV/AIDS affects older people in two main ways: it places a burden on them as carers, and it poses a direct infection risk. A research study conducted by the World Health Organisation (WHO) in Zimbabwe found that over 70% of carers of people with HIV-related illnesses are over 60 years of age. Research by HelpAge International in Thailand found that 70% of people living with HIV were in the care of older parents or relatives shortly before their death. Older people are also increasingly responsible for the care of children orphaned by HIV/AIDS; in Sub-Saharan Africa, as many as nine out of ten AIDS orphans are cared for by their extended family, in many cases their grandparents. In terms of their own vulnerability to infection, older people are largely invisible in international data on HIV/AIDS. Data on infection rates does not include over-50s, despite the fact that older men and women continue to engage in sexual relations into old age. However, their understanding of the nature, cause and transmission of HIV can be limited, as they seldom have access to information on it, and awareness campaigns typically target the young, not the old.

HelpAge International undertakes work directly supporting older people affected and infected by HIV/AIDS, and advocates for the inclusion of older people in responses to the disease. As the epidemic has progressed, HelpAge International and its partner organisations have launched a response through programmes that combine prevention, care and support to meet the needs of older people. The core areas where older people need support are:

• In their role as carers for people living with AIDS, and for orphans and vulnerable children.
• Access to information on the risk of HIV/AIDS, so that they can protect themselves and others against infection
• Emotional support to help older people deal with the stigma and discrimination that result from having a child or grandchild with HIV/AIDS.
• Psychosocial coping mechanisms to deal with stress, illness and grief.
• Treatment and support for older people with HIV/AIDS.

Feeling the strain: older caregivers and HIV/AIDS

The primary impact of HIV/AIDS on older people in most AIDS-affected countries is in their role as caregivers to people living with AIDS, who in most cases are adult sons and daughters, and children orphaned or otherwise made vulnerable by AIDS. In Sub-Saharan Africa, about 13 million children have lost one or both parents to HIV/AIDS. In Namibia, South Africa, Botswana, Malawi, Tanzania and Zimbabwe, up to 60% of orphaned children live in grandparent-headed households. Many grandparents care for several grandchildren. Women are more likely than men to be the main carers.

Research in Africa and Asia points to a wide range of problems experienced by older carers. These include exhaustion, financial hardship, grief and emotional upheaval, lack of knowledge and resources for dealing with adult children with HIV, conflicts with grandchildren, social stigma and discrimination and exclusion from information and support services. The strain of caring for people living with AIDS in the final stages of the illness can also be harrowing and tiring, and takes its toll on older people’s own health. A study in Cambodia found that many older people in HIV-affected households suffer poor physical and mental health through increased care-giving workloads. Older parents can also suffer feelings of blame, shame and guilt about their children’s situation.

Caring responsibilities also exact economic costs. In Tanzania, many older people report having to sell assets (including land and property) or using savings in order to support the people under their care. The lack of free treatment and affordable, accessible medicines adds to caregivers’ financial burdens. Older carers also meet the costs of family survival, including the provision of food and shelter. They take their responsibilities very seriously, and often get distressed about not being able to provide enough food and clothes, or being able to meet children’s educational needs. Even if older carers manage to find funds for school fees, they are often unable to provide other essential items such as uniforms, books and transport costs to and from school. The financial burden on older people who care for grandchildren is, in short, immense.

Older people are at risk of infection

HIV/AIDS prevention and awareness campaigns almost exclusively target younger people and adolescents, despite the fact that older people are still sexually active. Analysis of infection data collected in Uganda between 1992 and 2002 found that the over-50s made up 4.6% of those who attended voluntary testing and counselling centres. Of these, one in five tested HIV-positive (23.9% of women and 18% of men). By and large, the risk of infection and spread of HIV among older age groups goes undetected and unreported. Literacy levels among older people are low, limiting their access to what written information is available. Older women carers taking part in a study in Tanzania identified their main sources of information as peer educators, home care visitors and the radio. In Cambodia, older people identified television, radio and neighbours, especially young adults, as their primary source of information on HIV/AIDS.

Targeting HIV/AIDS programmes for older people

The key to supporting the numerous challenges older people face as a result of the HIV/AIDS epidemic lies in interventions at community level, and an intergenerational approach. To be effective, these require collaboration between governments, international agencies and NGOs. HelpAge International works with community-based organisations such as older people’s associations to identify and support affected and infected older people at a grassroots level. Programmes in countries including Kenya, Mozambique, South Africa, Sudan, Thailand, Uganda and Zimbabwe combine income generation with support and advice to older carers of people living with HIV/AIDS, and of orphans and vulnerable children.

In Cambodia, HelpAge International is running a pilot project in 15 villages to support older people’s associations to help families affected by HIV/AIDS. Members are selected by their communities to become HIV/AIDS volunteers. These volunteers visit families affected by HIV/AIDS, bringing food, money and medical items, such as oral rehydration salts, gloves, cotton wool and anti-fungal soaps. Money goes towards the cost of funerals and medical care, and clothes for children to help them stay in school. The volunteers also help with practical tasks, and provide emotional support. Volunteers also raise awareness about HIV/AIDS, and work to reduce the stigma associated with it.

HelpAge International’s experience shows that, once older people are informed and included in HIV/AIDS prevention projects, they are keen to be part of efforts to save their families and communities. Programmes training and supporting older people as ‘listeners’ and ‘counsellors’ are proving effective. In Juba, Sudan, HelpAge International has developed and strengthened an outreach system of older people’s committees, health promoters and social workers, which ensures that the most vulnerable are identified and supported. Utilising the important skills and status of older people, the programme provides them with the tools to become community educators, raising awareness about HIV/AIDS through the production of radio programmes, dramas, booklets and posters. HIV/AIDS education programmes in South Africa are encouraging dialogue between conventional health professionals and traditional healers, making it easier for older people to obtain appropriate health services.

Social protection for the most vulnerable

In order to target interventions successfully at grandparent-headed households, it is important to look at the resources they have, and provide them with adequate financial support. Some countries in Africa are implementing or developing social protection mechanisms for older people, orphaned children and other vulnerable groups. In Botswana, Namibia and South Africa, for example, a pension is provided for older people, which helps older carers of orphans to cope with the financial burden they bear.

The government of Zambia, funded by the German development agency GTZ, has launched a two-year cash transfer scheme targeting the poorest households, but including a high number of households headed by older people and affected by AIDS, and with orphans. Each household receives $6.20 a month. Most of this is spent on food, clothes, soap and farming inputs. Sixty per cent of members of beneficiary households are children under 19 years of age. School attendance and nutrition among children have improved since the introduction of the cash transfer. In South Africa, foster-care and child-support grants are available for age-eligible co-resident grandchildren. However, take-up rates on these grants have been low, partly because general awareness of them is poor. As part of a three-year project with the Muthande Society for the Aged (MUSA) in the KwaZulu-Natal metropolitan region of Durban, older people receive advice on access to social welfare entitlements.

Community credit committees run by older people and community members in Tete Province, Mozambique, have helped support over 300 older carers and young people, two-thirds of them women. Funds have been used to set up small businesses, including trade in small animals, used clothes, traditional beer-making and producing local foods. The credit committee allocates funds to projects that benefit the community. Interest on the funds is used to support the community’s older and most vulnerable households. Most of the older carers who received funds bought school items for their orphans and basic food and clothes for the household, and paid hospital or treatment costs.

Conclusion

To summarise, older people affected by HIV/AIDS need the following targeted support:

• Emotional support to help a child cope with the death of their parents;
• to cope with their own grief at the death of their son, daughter or grandchild; and
• day-to-day support to prevent isolation.

HIV/AIDS education

• about how HIV is transmitted and prevented;
• recognising symptoms of HIV in a family member;
• how to care for a family member with HIV (including treating common infections); and
• access to HIV/AIDS support groups and services.

Economic support

• to meet households costs including food and healthcare;
• to provide education and clothing for grandchildren;
• for treatment and travel to clinics to care for sick children; and
• to compensate for loss of earnings or family support.

Practical and legal support

• support with parenting;
• acceptance by the authorities as adoptive or foster parents;
• access to information on nutrition and immunisation; and
• advocacy support, such as protecting the rights of widows and children to inherit land.

Faith Mallis Communications Officer Media at HelpAge International. Her email address is: press@helpage.org

References and further reading

The Impact of AIDS on Older People in Africa: Zimbabwe Case Study, Ageing and Life Course, Non-Communicable Disease Prevention and Health Promotion, WHO, Geneva, 2002.

J. Knodel et al., ‘Older People and AIDS: Quantitative Evidence of the Impact in Thailand’, Social Science and Medicine, 52:9, 2001, pp. 1,313–1,327.

Africa’s Orphaned Generations, UNICEF, 2003.

Children on the Brink 2004, UNICEF, UNAIDS, USAID, 2004.

R. Monasch and J. T. Boerma, Orphanhood and Childcare Patterns in Sub-Saharan Africa: An Analysis of National Surveys from 40 Countries, AIDS 2004, 18 (suppl. 2): S55–S65.

The Impact of HIV/AIDS on Older people in Cambodia, HelpAge International, 2003. The Cost of Love: Older People in the Fight against AIDS in Tanzania, HelpAge International, 2004.

Age and Security: How Social Pensions Can Deliver Effective Aid to Poor Older People and their Families, HelpAge International, 2004.