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The importance of supporting children with special needs so that they have the opportunity to acquire the necessary educational, living and social skills to equip them for adult life has been recognised for some time. However, in contrast, the needs of adults, and the importance of supporting people with learning disabilities and their families at times of transition, has been relatively neglected. Whilst the potential difficulties associated with the transition from childhood to adult life is now receiving more attention the fact that needs may change yet again in later adult life is only now beginning to be considered.

In the transition from full-time education, a major concern is that there are a very limited selection of support services for adults, and individuals can move from a relatively structured environment of special education to very limited support and opportunities. The recent Community Care Act provides the framework for decision making at times of such change and has placed a statutory responsibility on social services to undertake a ‘needs-led assessment’ at this transition, the purpose of which is to help individuals and their families to plan for adult life. Whether this happens still appears arbitrary and the options available vary considerably across the country. In an ideal situation there should be a range of imaginative services that can cater for the considerable range of individual need and individual choice. This would include access to full-time employment, supported employment schemes, more sheltered work environments, adult education and so on.

Old age in particular is associated with social and biological changes. For example, family networks alter as parents age and for all of us there is an increasing risk of age-related health problems. Outlined below is the evidence which suggests that ageing and the problems of old age are particularly relevant to people with Down’s syndrome as some of these age-related problems develop earlier in life than would normally be the case.

Throughout life there are changes occurring in brain structure and function. These are particularly marked at the two extremes of life, childhood and old age. In early childhood this is primarily growth and the rationalisation of connections between the brain cells (neurones). It is a combination of these brain changes in childhood and the parallel educational and social opportunities, which result in the increasing acquisition of educational and other skills. The extent to which this developmental process can be modified in children with Down’s syndrome has been hotly debated and is beyond the scope of this article. In any research designed to address this question it is clearly a complex task to disentangle the effects of the educational and social environment, nutrition and the fact that there is anyhow considerable variation in the extent and nature of developmental delay and learning disabilities in children with Down’s syndrome. In any given child it is impossible to know how different he/she might have been if a specific intervention had not taken place. However, what has been striking is the marked improvement in life expectancy for people with Down’s syndrome that has occurred in this century and the significantly better educational opportunities. As with any child good physical health, sound nutrition and excellent social and educational opportunities maximise the chance of optimum development.

At the other end of life neuronal cell loss in the brain occurs. Old age is associated with an increased risk of developing minor cognitive difficulties and the development of more serious mental health problems, such as depression and dementia, as well as physical illnesses. In the general population relatively minor cognitive difficulties in old age are common, however, the more serious brain changes associated with disorders such as dementia are relative rare, although the risk of such disorders increases as people live into their 70s and gas. The most common form of dementia which occurs in later life is called Alzheimer’s disease, named after Alois Alzheimer who, in 1906, first described the characteristic brain changes (called plaques and neurofibrillary tangles) associated with this disorder. In the past this was often referred to as senile or pre-senile dementia.

In Down’s syndrome the situation is different. It has been recognised since the early 1900’s that changes are observed in the brain from relatively early in life and by middle age the formation of Alzheimer-like ‘plaques and tangles’ has occurred. Strikingly these ‘Alzheimer-like’ brain changes, are almost always found in people with Down’s syndrome who have died in middle age or later but are not found at such a relatively young age in people who have learning disabilities for reasons other than Down’s syndrome.

The appearance of these brain changes in people with DS is only of great significance if they lead to loss of ability and the appearance of the clinical changes characteristic of dementia (i.e., the development of Alzheimer’s disease). It is the extent to which these brain changes are associated with clinical changes characteristic of Alzheimer’s disease that has been the subject of several studies in different countries, including our own in Cambridge, undertaken by Johnny Hon, Fran Stevens, Felicia Huppert and myself.

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