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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