Select Committee on International Development Minutes of Evidence


Memorandum submitted by HelpAge International

SUMMARY

  This memorandum sets out the main concerns of HelpAge International with regard to impact of AIDS/HIV on older people in the developing world.

  The data available on HIV/AIDS deaths and rates of infection in the developing world indicate that older people are now primary carers and supporters of younger family members, both those dying of the disease and orphans of the middle cohort who are currently dying in ever increasing numbers. Older people who are already poor face the loss of economic support from their adult children, little social security and pension support (only South Africa has universal pension coverage in the countries where the epidemic is most serious) and unexpected social, psychological and economic burdens due to the caring role they assume. Older people are also contracting the virus in increasing numbers although research is limited on the cases of HIV/AIDS in the over 50s. There are few national, local and community based programmes that target the needs of older people as they shoulder the new roles the pandemic is occasioning and little general awareness in the community at large, including the donor community, about the issues at stake.

1.  ABOUT HELPAGE INTERNATIONAL AND THE ISSUES OF OLDER PEOPLE

  1.1  HelpAge International (HAI) is a world-wide network of local and national organisations in over 70 countries in the developing and developed world, which works with disadvantaged older people on issues of poverty, rights and exclusion. It aims to make a lasting improvement to the lives of older people, through supporting their empowerment, promoting their equality, and ending discrimination against them. HAI undertakes and funds practical programmes, research, advocacy and capacity building with its 60 members and 200 partners and gives special support to older people's organisations and older people-led programmes. HAI's annual budget is some 11 million; major donors include the European Union, DFID and Help the Aged UK. HAI has Regional offices in Thailand (for Asia), Kenya (for Africa), Jamaica (for the Caribbean), Bolivia (for South America) and London (for Eastern and Central Europe), and Country Programme offices in Tanzania, Sudan, South Africa, Cambodia, Ethiopia, Kosovo and Northern Iraq. Its 40 UK-based staff support the some 60 national and international staff in the aforementioned offices and support the international membership network with information and publications, policy-related materials and advocacy input.

  1.2  HAI was established in 1983, in response to the challenges for older people caused by the profound demographic changes affecting the developing world. The growth in the number, and proportion, of older people is occurring very rapidly in the developing world. Even though old age has been typically regarded as a phenomenon of developed countries, the great majority (two-thirds) of those over 60 years of age live in the developing world. This proportion is increasing steadily due to improvements in health, hygiene and basic services, and will reach nearly three-quarters by the 2030s (UNFPA and CBGS, 1999). The US Bureau of the Census (Washington DC) calculates that by 2020, countries such as Cuba, Argentina, Thailand and Sri Lanka will have higher proportions of older people than the US does today. By 2025, numbers of older people in the developing world are on course to double to 850 million, comprising 12 per cent of the global population. Women outlive men in nearly all countries, rich and poor; in developing countries older women account for more than 10 per cent of the total population; many older women are widowed and live alone.

  1.3  In developmental terms the longevity of older people in poor countries poses immediate challenges. The developing world is growing older before it is becoming richer. Older people are recognisably one of the poorest and most vulnerable groups, borne out by HAI's own research and published evidence, as well as that of others, such as the World Bank, UNDP and UNFPA. Ample evidence exists to demonstrate that poverty is the main threat facing older people,[3] and that older people themselves both define poverty and identify the factors that impoverish them. Aspects of vulnerability such as physical weakness, isolation, powerlessness and low self esteem are all factors that are profoundly interconnected with age. In common with all poor people the poverty of older people is not only about per capita income; its multiple dimensions embrace qualitative aspects of life such as health and literacy status, ease of access to basic services, social exclusion, issues of equity, powerlessness and vulnerability.[4] The majority of older people live in labour intensive environments in which capacity to work is a fundamental insurance against absolute poverty. Frail older people, especially older women, are amongst the poorest as described by poor people themselves. In Ghana for example, "the combination for women of age, widowhood and lack of adult children was frequently "associated with chronic vulnerability."[5]


  1.4  For HelpAge International global poverty is a fundamental human rights issue. The exclusion and impoverishment of older people is a product of structural inequalities through the lifecycle, and exacerbated by age and attitudes towards age.[6] Inequalities experienced in earlier life—for example in access to education, employment, and health care, as well as those based on gender—have a critical bearing on status and well being in old age. For all older people, especially those who are poor, the consequences of such inequalities are worsened through their further exclusion, for example from decision-making processes, and access to services and support. This applies even to development initiatives, such as literacy programmes, community level education schemes, income generation or credit schemes.

  1.5  The poverty and social exclusion of older people not only represents the greatest threat to their livelihoods, achievement of rights and entitlements, it is impacting on the livelihoods and structures of immediate families and communities. Most families in the developing world both depend on their old for support and expect and want to give support when required. Chronic family and community poverty strains those expectations and reciprocal arrangements. For example, most women in developing countries enter old age with associated problems of poor diet, ill health, lack of work and inadequate housing; family abandonment, abuse and isolation can occur because of the very real difficulties in giving support. Older men can be rejected and abandoned when their economic contribution to the household declines. When support is given it is often at a real cost to the family concerned.[7]

  1.6  Whilst the implications of trends that impoverish have been tracked for younger age groups, neither the poverty of older people, nor the impact of their poverty on younger age groups is tracked in a systematic way for poverty-related policy and programme development. The strategies and targets currently being used to raise one billion people out of poverty by 2015 do not readily embrace the issues faced by older people. The stark truth is in fact more older people than ever before are ageing in poverty and exclusion, which puts pressure on the younger generations and places in doubt the potential success of the IDTs as currently formulated.

  1.7  For this reason HelpAge International is asking that the poverty of older people be given attention. We are also asking that the multiple contributions that they make, even though they are amongst the poorest groups, receives greater attention and support in development policy making. The recorded and measured contributions of older people include work to support family and community, cash transfers (in South Africa the pension is recognised as a well targeted poverty alleviation strategy as it supports the extended family); child-minding and basic education; extra care giving for young and disabled dependants, HIV/AIDS carers; domestic chores; technical, agricultural or health knowledge, counselling and acquired wisdom; historical knowledge and continuity; some level of control of material assets and decision-making processes at family and community level. Older people often hold religious responsibilities and resolve conflict in times of crisis; they can influence younger generations in peace-building and community regeneration. In Buddhist cultures "making merit" when old often implies taking the lions share of community enterprises, including road and house building.[8]

2.  OLDER PEOPLE AND HIV/AIDS

  2.1  The HIV/AIDS epidemic is altering the demographic structure of many societies. HIV/AIDS is affecting the ratio between younger and older populations. UNFPA (State of the World Population, 1998, p 13) state that while the young still outnumbered the old by some seven to one in 1995 the ratio is declining. This is due both to the global challenges of AIDS and the increasing lifespan in all developing countries. United Nations projections indicate that AIDS will reduce the young old ratio in sub-Saharan Africa from 15:1 in 2000 to 4:1 in 2050 (source United Nations. Sex and Age Quinquennial 1950-2050 1996 revision).

  2.2  In areas of high prevalence, HIV/AIDS threatens social and economic arrangements which lie at the root of social and economic livelihoods. The epidemic of HIV/AIDS has already reversed many of the developmental gains achieved in the past twenty years in those countries most affected. The unusual number of mature adult deaths and the burden of sickness place great demands on the coping mechanisms of these societies.

  2.3  The key issue for consideration is the impact of the disease on the livelihoods and health of those older people who already are the primary carers of those affected by AIDS. Older women in particular absorb much of the care burden of the sick middle cohort, and of their orphaned children. In 1998 there were a total of 7.8. orphans in sub-Saharan Africa; our indications are that the majority of these orphans are cared for by older people, primarily females. Research in Thailand reports that two thirds of children with AIDS return to co-reside with a parent, usually the mother, (Knodel et al p9), and that parents in their 60s and 70s are the preferred and most common caregivers. Although documentation of the impact on older people of AIDS has not been as thorough and exhaustive as it should be, such impact assessment that exists points to the significant and unsupported contributions of older people to the care and welfare of the young, together with the serious economic and psycho-social burden shouldered by the old when caring for young dependants. Evidence too is beginning to emerge about the degree of HIV transmission to older people via incidental infections through caring, as well as through sexual activity.

  2.4  HelpAge International has been documenting through research and programme interventions these issues and is reporting on and working to alleviate the issues older people face and by extension, the orphans they care for and in their immediate community. For this reason HAI is currently both supporting research and working directly with older people coping with the impact of AIDS/HIV in Thailand, Tanzania, Zimbabwe, South Africa, Cambodia, Ethiopia and Uganda.

3.  HAI'S FOUR MAIN CATEGORIES OF CONCERN:

3.1  ECONOMIC

  3.1.a  Most older people in developing countries rely on their income-generating capacity and/or reciprocal arrangements with other family members to support themselves in old age, such as childcare in return for assistance with heavy duty tasks. When the middle cohort dies older people are vulnerable to crisis. Research in Thailand estimates some 49 per cent of older people consider their children as main sources of support (Knodel et al forthcoming); a 1999 longitudinal study in Uganda conducted by HAI and the Medical Research council of the UK describes the impact of loss of support of children on parents whose capabilities are declining with age. The World Health Organisation reports that the growing numbers of orphaned children in Zimbabwe and Zambia (set to increase to 40 per cent of all children) are mainly supported by older women, who are themselves vulnerable as described in para 1.3. Case study research undertaken in Ethiopia in 1999 on older primary carers of AIDS victims and orphans states "most of the older people studied are incapable of supporting themselves and are dependent on other members of the household or close relatives for care". (Gurmessa p 43). HAI research in South Africa reports "older people themselves feel `orphaned' by the death of their own children and the loss of potential support in old age". (South Africa Study, p 41.)

  3.1.b  The cost of caring for the sick, and related unexpected medical and household expenses, can cause economic ruin, which affects old and young alike. Gurmessa reports two cases of older women selling assets and turning to full time begging (pp 37, 38) to cover costs of medical and living expenses. A 60 year old widow in Ethiopia who is bringing up four of her sister's children because their mother died of AIDS, describes being forced to leave her house because she could not pay the rent. " Her death throws me into a sea of hunger and misery." In Uganda, where in the rural area studied where begging was not possible, medical aid was simply not sought (Williams et al p 10). Health workers in the South Africa research acknowledge that older people are impacted financially by the AIDS crisis as they pay for treatment for the sick and look after the orphans (South Africa Study, p 41). On the other hand caring for the sick is reported to have led to decreased access to food for consumption and for sale, and deceased access to markets (ibid). All the research makes the clear link between the reduction of time available for agriculture and income generation because of the time spent in caring for the sick.

  3.1.c  Schooling and shelter are expenses which are both unexpected and necessary when caring for orphans. In the Kagera region of Tanzania, HAI estimated in 1997 that a key reason why only 1,029 of AIDS orphaned children out of a potential 146,297 were attending secondary school was the inability of grandparents to afford schooling. A related factor was to do with the immediate cost of improved shelter necessary to accommodate young children. The majority of carers were 60 plus, who stated categorically that they could not afford to pay for improved shelter and schooling, plus the clothes, shoes and books necessary for their charges to go to school. Support given for schooling costs had an immediate impact on school attendance.

  3.1.d  The cost of burials. Williams reports from Uganda (p 11) the tensions arising from the responsibilities that older people have in burying their children, and even grandchildren. Additionally every household is expected to contribute to the costs of each burial; a cumulative load beyond the reach of many poor households. Mourning rites interrupt essential economic activity. Furthermore older people are not only required to meet large unexpected expenses but they are concerned that there will be no one left to provide them with the burial they had expected. "The people who should bury us are dying! We will be alone when we die!" (p 13, Williams et al.)

  3.2  The risk of infection

  3.2.a  There is limited research on the incidence of AIDS among the over 50s and few age awareness programmes targeted at this age group. But we know that the incidence of AIDS and HIV infection in older people is an important, if underreported issue. The most comprehensive research on AIDS in the over 50s has been done in the US, where it is reported that 10 per cent of all HIV+ people are over 50. Between 1991 and 1999 new diagnosis in this age group rose by 22 per cent compared with just 9 per cent among people under 50. Studies in Kenya and Uganda corroborate the finding that the number of older people being diagnosed with HIV and AIDS is rising. In Uganda it is estimated that HIV infection among those aged 60 is 4.7 per 1,000 males; but it is also the case that the over 50s tend to be omitted from estimates of adult infections on the grounds that "the vast majority of those who engage in substantial risk behaviours are likely to be infected anyway by this age" (UNAIDS 1998 p 3).

  3.2.b  The assumptions that older people are not sexually active are far from the truth. A social worker in Kenya comments that "it is assumed that older people have become infected as carers and the fact that older people could be infected themselves from their own sexual relationships is not even considered". In Thailand over 5 per cent of HIV+ infections are in the over 50 age group, with similar figures being reported for India and Bangladesh. 3.9 per cent of the total cases reported in Kenya by January 1999 were over 50 years old. Older people can become infected by caring; especially so when they are not informed about how the disease is contracted.

  3.2.c  There are few AIDS/HIV awareness raising programmes that target older people, despite the fact that some agencies that specialise in AIDS/HIV awareness raising believe that older men are being primary means of HIV transmission (personal communication, 1999); Community members know that older people are sexually active. Youth interviewed in Uganda and South Africa in HAI research were clear that older men are sexually active, especially with young women, and know too that older women have sex with younger men who may be infected (South Africa Study p 41, Williams et al p 4, 5). Testing is not readily available for older people, and for some older people the patchy knowledge of AIDS that they have can lead to a fatalistic assumption that everyone who has sex will get AIDS. The lack of effort to make awareness raising programmes accessible to older people results in older people being reluctant to go to seminars with younger community members ("People wouldn't want others to go if they went to the seminars, Williams et al p 5). Our research indicates that older people do not freely discuss HIV because of this ignorance, preferring to "gossip" about it rather than looking at it seriously, leading to continued ignorance about its causes, how it is transmitted and its effects.

  3.2.d   In all countries the real figures of HIV/AIDS incidence amongst older people are likely to be much higher than currently reported, because the medical profession may be reluctant to consider HIV or AIDS as a possible diagnosis when presented with an older person displaying symptoms. HIV and AIDS symptoms in older people can be confused for other conditions, such as dementia and TB. Older people themselves tend not to have information about the disease, or means of its prevention. These factors hinder the development of HIV/AIDS related diagnosis, exacerbated by assumptions that older people do not contract AIDS. Misdiagnosis and inappropriate treatment combines with ignorance amongst older people to make the impact and trauma of the condition even more problematic

3.3  PSYCHOSOCIAL QUESTIONS; TRAUMA, LOSS AND FEAR

  3.3.a  Studies in Ethiopia emphasise that the stigma and further social isolation that caring for people with AIDS causes is a significant and unacknowledged burden on top of the economic costs to the caregiver. Gumbos reports the case of a 70 year old women living on a minimum income of 45 birr per month who took on the responsibility of nursing her niece until she died, and subsequently caring for her niece's child. There was no help given by friends and community during the illness and she had to sell assets such as her radio and household furniture to cover the costs of caring, estimated at between 300 and 400 birr. The grief and trauma at the loss of children before their time is often traumatic, coupled with future uncertainty about their situation as they become less able. "This is a terrible situation. There is no cure for AIDS, and it will take all our children. We are crying with our sorrow" (Williams p 14).

  3.3.b  Individual and community grieving affects younger ones in equal measure, with reports from Uganda indicating that "this omnipresence of sickness and death may explain, to some extent, the pessimism of young people" (p 14 Williams et al). Instead of being able to call on the support of their children in their old age older people have to be givers and providers for longer than they had estimated for. The burden of knowing that they cannot provide effectively for grandchildren and that these children also have to care for them when they should be at school is very painful and they pass this on to the young ones. Gurmessa reports the trauma of older carers having to play primary parental roles when not feeling able to do so because of their age, and the unhappiness they feel that the orphan is so obviously lacking maternal affection(p 45). Fear that the disease will affect their other children can obsess them and cause problems in the wider family environment (Williams et al p 15). Little is reported however of older people fearing that they will contract the disease though caring-presumably because of their ignorance about it-though health workers in South Africa and Zimbabwe have recommended that the Government supply surgical gloves on a national scale to older persons who are caring for clinically diagnosed cases (person communication MOH official Zimbabwe 1999, South Africa Study p 41).

  3.3.c  Grief, economic ruin and stress caused by all of the above combine to create an environment of hopelessness and sadness which affects the lives of older and younger people alike. There are indications that the multiple stresses and fears caused by the epidemic may be compromising the caring relationships between households. The implications may go beyond questions of care, to issues of social stability and governability (Richards; 1996; Zack-Williams; 1999; Barnett and Whiteside, 1999). The findings from Uganda point to the compromising of the caring relations between and within families and households caused by the stresses associated with the disease. ("The grandchildren are crying and I am crying and no-one cares for anyone else" Williams et al p 15.)

3.4  ABSENCE OF TARGETED PROGRAMMES TO SUPPORT OLDER CARERS

  3.4.a  The cumulative economic costs of caring are not cushioned by programmes aimed at older carers. In Uganda, where studies have shown that nearly a quarter of all AIDS orphans in some districts are cared for by grandmothers, there is no overall programme aimed at supporting older carers. Recent studies in Ethiopia (M Gurmessa, 1999) show that most older carers have no additional resources. Any state or private assistance they may have received while the child or dependent was dying dries up on the death, even though the care has eroded other forms of income generating activity, at a time when their own declining health and income makes them less able to cope. Reports from Zimbabwe indicate that although it is recognised that older people are primary carers there is little support for the grandparents who are having to return to working the land and engage in petty trade. One result of this is that the grandchildren they care for are opting out of school in order to work to support themselves and their aged carers.

  3.4.b  There are few education programmes targeting older people, and still fewer counselling services that can be easily accessed by older people. This is not to say that such programmes do not exist for the community in general, but that they are aimed at younger age-groups and older people do not feel comfortable attending. The research in Uganda states that the older participants in the study did not access the TASO/MRC counselling service, (Williams et al p 16) and in Thailand it is reported that the stress of caring means that older people do not have the energy, confidence resources to access any services that may exist (G Paul, ATCOA/HAI 2000).

  3.4.c  It is clear from the available research that there is limited recognition or support of the pivotal role older people play in responding to the AIDS pandemic. HelpAge International has programmes in Tanzania and Thailand that have responded to older people suffering as a result of AIDS. Initiatives have focused on covering school fees, income generating projects and strengthening older peoples organisations. This work demonstrates that older people are net providers and suggests that a rights-based approach, starting with direct consultation with older people on their needs and experiences is essential to the delivery of effective social and financial support systems.

4.  KEY RECOMMENDATIONS TO DONORS AND POLICY MAKERS

  4.a  Increase quantitative and qualitative research on the impact of AIDS/HIV on older people, in order to develop effective programmes to support older people as primary carers of people with AIDS/HIV and their orphans.

  4.b  Develop and target funding to rights-based, social development and income generation programmes that give more opportunities for older people's active participation. Development programmes, credit, education and training schemes that are currently open to other age groups should be made inclusive of older people.

  4.c  Support the direct and indirect school costs of orphans and housing costs of older people with young dependants.

  4.d  Give priority to targeted gender-sensitive, economic and social support to vulnerable older carers, including counselling, education, condom supply and support for parenting responsibilities. Priority should be given to programmes that use older people as educators.

  4.e  Support information gathering and governmental/NGO and community level awareness raising of the risk of HIV infection to older persons and the silent crisis faced by the many thousands of older persons who are living with the virus.

  4.f  Support and develop gender sensitive and older people focused peer counselling and education programmes on coping mechanisms to live with HIV/AIDS.

  4.g  Prioritise awareness raising among medical professionals and health providers on issues faced by older people coping with AIDS, and the development of strategies with older people to improve services and older people's access to them.

  4.h  Support awareness raising programmes amongst younger community members on the economic and psycho-social impact of AIDS/HIV on older people.

HelpAge International

May 2000

KEY REFERENCES (AVAILABLE ON REQUEST)

    —  The Ageing and Development Report, HelpAge International, London 1999.

    —  "The Contributions of Older people to Development", the South Africa Study, by Thebe Mohatle and Robert de Graft Agyarko, HelpAge International London 1999.

    —  Older people and Aids; Quantative evidence of the Impact in Thailand, J Knodel, M Van Landignham, C Saengtienchai and W Imem, Population Studies Centre Research report no 00-43, Michigan 2000.

    —  The State of the Worlds Population "The New Generations" report 1998, pp 11-13, United Nations Population Fund, New York, USA.

    —  "We will be alone when we die" HIV/AIDS and the aged in rural Uganda, Alun Williams and Grace Tumwekwase, HAI/Medical Research Council (MRC) UK, 1999.

    —  The role of older people in the HIV/AIDS pandemic", concept paper for the Social Change and Mental Health programme, World Health Organisation, December 1999.

    —  "The Social Effects of Aids on the Elderly", M Gurmessa, Addis Ababa June 1999.

    —  HIV/AIDS and its impact on older people in Thailand, unpublished paper by G Paul, ATCOA/HAI, Chiang Mai, May 2000.

    —  Evaluation of HAI programmes in Kagera region, Tanzania, A Sakufa, CASEC, Arusha 1999.


3   The Ageing and Development Report, HelpAge International, London 1999, pp 3-46. Back

4   The Contributions of Older People to Development: The Ghana and South Africa Studies, HelpAge International 1999. Back

5   idem. Back

6   Neysmith S and Edwardh J (1984) "Economic Dependency in the 1980's: Its Impact on Third Worlds Elderly" Ageing and Society Vol 4, No 1, argue that demographic and economic factors are more significant determinants of the status of older people than universal value systems. Back

7   "Sometimes we have to care for our in-laws as well as our parents. Taking care of much older parents is very difficult-harder because we are very poor and do not have enough food" ("Understanding the situation of older people in the LAO PDR' J Graham et al, Dept of Labour and Social Welfare/CUSO/HAI, Thailand 2000, p 22). Back

8   The Ageing And Development Report, pp 3-22, Development and the Rights of Older People, M Gorman, HAI 1999. Back


 
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