Box 312 The 1066 Dementia Research Group key findings

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From the development perspective, one of the key findings from the study was that caregiving in the developing world is associated with substantial economic disadvantage. A high proportion of caregivers had to cut back on their paid work in order to care. Many caregivers needed and obtained additional support, and while this was often informal unpaid care from friends and other family members, paid caregiv-ers were also relatively common.

People with dementia were heavy users of health services, and associated direct costs were high. Compensatory financial support was negligible; few older people in developing countries receive government or occupational pensions, and virtually none of the people with dementia in the 10/66 study received disability pensions.

Caregivers were commonly in paid employment, and almost none received any form of caring allowance. The combination of reduced family incomes and increased family expenditure on care is obviously particularly stressful in lower income countries where so many households exist at or near subsistence level. While health-care services are cheaper in low income countries, in relative terms families from the poorer countries spend a greater proportion of their income on health care for the person with dementia. They also appear to be more likely to use the more expensive services of private doctors, in preference to government-funded primary care, presumably because this fails to meet their needs. Source: (1).

Future development of services for older people needs to be tailored to suit the health systems context. "Health systems" here can be taken to include macroeconomic factors, social structures, cultural values and norms, and existing health and welfare policy and provision.

Specialists — neurologists, psychiatrists, psychologists and geriatricians — are far too scarce a resource to take on any substantial role in the first-line care for people with dementia. The focus must be upon primary care. Many developing countries have in place comprehensive community-based primary care systems staffed by doctors, nurses and generic multipurpose health workers. The need is for:

■ more training in the basic curriculum regarding diagnostic and needs-based assessments;

■ a paradigm shift beyond the current preoccupation with prevention and simple curative interventions to encompass long-term support and chronic disease management;

■ outreach care, assessing and managing patients in their own homes.

For many low income countries, the most cost-effective way to manage people with dementia will be through supporting, educating and advising family caregivers. This may be supplemented by home nursing or paid home-care workers; however, to date most of the growth in this area has been that of untrained paid carers operating in the private sector. The direct and indirect costs of care in this model therefore tend to fall upon the family. Some governmental input, whether in terms of allowances for people with dementia and/or caregivers or subsidized care would be desirable and equitable. The next level of care to be prioritized would be respite care, both in day centres and (for longer periods) in residential or nursing homes. Such facilities (as envisaged in Goa, for example) could act also as training resource centres for caregivers. Day care and residential respite care are more expensive than home care, but nevertheless basic to a community's needs, particularly for people with more advanced dementia.

Residential care for older people is unlikely to be a priority for government investment, when the housing conditions of the general population remain poor, with homelessness, overcrowding and poor sanitation. Nevertheless, even in some of the poorest developing countries (e.g. China and India), nursing and residential care homes are opening up in the private sector to meet the demand from the growing affluent middle class. Good quality, well-regulated residential care has a role to play in all societies, for those with no family support or whose family support capacity is exhausted, both as temporary respite and for provision of longer-term care. Absence of regulation, staff training and quality assurance is a serious concern in developed and developing countries alike.

Similarly, low income countries lack the economic and human capital to contemplate widespread introduction of more sophisticated services; specialist multidisciplinary staff and community services backed up with memory clinics and outpatient, inpatient and day care facilities. Nevertheless, services comprising some of these elements are being established as demonstration projects. The ethics of health care require that governments take initial planning steps, now. The one certainty is that "in the absence of clear strategies and policies, the old will absorb increasing proportions of the resources devoted to health care in developing countries" (28). This shift in resource expenditure is, of course, likely to occur regardless. At least, if policies are well formulated, its consequences can be predicted and mitigated.

Prevention, where it can be achieved, is clearly the best option, with enormous potential benefits for the quality of life of the individual, the family and carers, and for society as a whole. Primary preventive interventions can be highly cost effective, given the enormous costs associated with the care and treatment of those with dementia (see the section on Disability, burden and cost, above). The primary prevention of dementia is therefore a relatively neglected area. Evidence from the developed world suggests that risk factors for vascular disease, including hypertension, smoking, type II diabetes, and hypercholesterolaemia may all be risk factors for AD as well as VaD. The epidemic of smoking in developing countries (with 13% of African teenagers currently smoking), and the high and rising prevalence of type II diabetes in South-East Asia (a forecast 57% increase in prevalence between 2000 and 2010, compared with a 24% increase in Europe) should therefore be particular causes of concern. It is as yet unclear whether the improvements in control of hypertension, diet and exercise, and particularly the decline in smoking seen in developed Western countries that has led to rapid declines in mortality from ischaemic heart disease and stroke, will lead to a later decline in the age-specific incidence of AD and other dementias. Many of these preventive measures are also likely to improve general health (29).

Delivery of care

All over the world the family remains the cornerstone of care for older people who have lost the capacity for independent living, whether as a result of dementia or other mental disorder. However, stereotypes abound and have the potential to mislead. Thus, in developed countries with their comprehensive health and social care systems, the vital caring role of families, and their need for support, is often overlooked. This is true for example in the United Kingdom, where despite nuclear family structures and contrary to supposition, there is a strong tradition that persists today for local children to provide support for their infirm parents. Conversely, in developing countries the reliability and universality of the family care system is often overestimated. Older people are among the most vulnerable groups in the developing world, in part because of the continuing myths that surround their place in society (30). It is often assumed that their welfare is assured by the existence of the extended family. Arguably, the greatest obstacle to providing effective support and care for older persons is the lack of awareness of the problem among policy-makers, health-care providers and the community. Mythologizing the caring role of the family evidently carries the risk of perpetuating complacency.

The previously mentioned 10/66 Dementia Research Group's multicentre pilot study was the first systematic, comprehensive assessment of care arrangements for people with dementia in the developing world, and of the impacts upon their family caregivers (27). As in the EUROCARE study with data from 14 European countries (31), most caregivers in developing countries were older women caring for their husbands or younger women caring for a parent. Caring was associated with substantial psychological strain as evidenced by high rates of psychiatric morbidity and high levels of caregiver strain. These parameters were again very similar to those reported in the EUROCARE study. Some aspects, however, were radically different. People with dementia in developing countries typically live in large households, with extended families. Larger families were associated with lower caregiver strain; however, this effect was small and applied only where the principal caregiver was co-resident. Indeed, it seemed to operate in the opposite direction where the caregiver was non-resident, perhaps because of the increased potential for family conflict.

In many developing countries, traditional family and kinship structures are widely perceived as under threat from the social and economic changes that accompany economic development and globalization (30). Some of the contributing factors include the following:

■ Changing attitudes towards older people.

■ The education of women and their increasing participation in the workforce (generally seen as key positive development indicators); tending to reduce both their availability for caregiving and their willingness to take on this additional role.

■ Migration. Populations are increasingly mobile as education, cheap travel and flexible labour markets induce young people to migrate to cities and abroad to seek work. In India, Venkoba Rao has coined an acronym to describe this growing social phenomenon: PICA — parents in India, children abroad. "Push factors" are also important. In the economic catastrophe of the 1980s, two million Ghanaians left the country in search of economic betterment; 63% of older persons have lost the support of one or more of their children who have migrated to distant places in Ghana or abroad. Older people are particularly vulnerable after displacement as a result of war or natural disaster.

■ Declining fertility in the course of the final demographic transition. Its effects are perhaps most evident in China, where the one-child family law leaves increasing numbers of older people, particularly those with a daughter, bereft of family support.

■ In sub-Saharan Africa, changing patterns of morbidity and mortality are more relevant; the ravages of the HIV/AIDS epidemic have "orphaned" parents as well as children, as bereaved older persons are robbed of the expectation of economic and practical support into later life.

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