Dementia is a clinical syndrome. This chapter examines the definition of dementia and explores a number of issues related to dementia as it is experienced in the UK.

It is worth taking time to look at the implications of this definition.

• Dementia as a syndrome. Central to the definition is a change in mental skills. To diagnose dementia, these changes need to be confidently identified, which usually means obtaining a careful history supported by an assessment of mental skills. Dementia relates to how well a person’s brain is working rather than the presence of pathology, and can’t be diagnosed from a brain scan any more than a plain X-ray of an arthritic joint can show pain. The diseases that cause dementia are covered in Chapter 2.
  
• Cognitive functions are a diverse assortment of brain activity. The term ‘cognitive functions’ covers memory encoding, long-term stores of knowledge, word finding, language comprehension, face or object recognition, planning and organising of activity and judgement. Different brain diseases lead to different patterns of cognitive change. There is more to dementia than memory impairment.
  
• To diagnose dementia, there must be good reason to suspect disease of the brain. Brain imaging may help, but in practice, brain disease is usually inferred from change in mental skill.
  
• It is quite possible to have brain pathology without dementia. As imaging techniques develop, it may soon be common to diagnose Alzheimer’s disease years before any symptoms have developed. Vascular changes on imaging are very common and on their own don’t mean vascular dementia.
  
• Impairment of daily functioning is an important but imprecise term. Very minor changes in mental skills are not usually referred to as dementia, although there may be a difference of opinion between patient, carer and clinician about when the change of functioning has occurred. For those with some detectable changes in mental function that are not impacting on daily functioning, the term mild cognitive impairment (MCI) is sometimes used.
  
• When discussing dementia, we should be careful not to use syndrome and pathology as interchangeable concepts.

In the 1970s, the late Geriatrician Bernard Isaacs encouraged the use of the term ‘chronic brain failure’ as an alternative to dementia. The aim was to emphasise organ failure and to bring the definition in line with other commonly used terms, such as heart failure. ‘Acute brain failure’ represented delirium. Ultimately, the term was dropped as it had too many negative connotations, but the principle is worth reflecting on. Dementia is what we experience when changes in brain function impact on day to day life.

The National Audit Office in its groundbreaking report ‘Improving Services and Support for People with Dementia’ took a more blunt approach and chose the simple term ‘progressive and terminal brain disease’. Whilst this may not respect the syndrome/pathology distinction, it had the merit of communicating the seriousness of dementia to a wide range of opinion formers and politicians.

Until the National Audit Office published its report on dementia in 2007, dementia had never been considered a priority. It was the impact of dementia on the UK highlighted in this report that brought about a new political will to address the condition. The report detailed the real situation about dementia – not only how much the NHS and Social Services were spending on dementia but also what individuals spent on their own care and how much lost earnings could be attributed to carers taking time off work to provide care. The answer was a little over £17 billion.

The significance of this sum was that if other conditions underwent the same analysis, dementia cost the UK more than heart disease, stroke and cancer combined. Dementia is the most expensive health care issue the country faces, and it will continue on an upward trajectory. The economic impact for 2012 was over £23 billion.

The diseases that cause dementia get commoner as age advances, so the majority of those living with dementia are over 80. But not all old people have dementia and not all people with dementia are old. Dementia can occur in people under 65, when specialist skills are needed to address the complexities of diagnostic diversity, complex personal and family responses and age-related issues such as employment. The needs of younger people and their families are examined in Chapter 9.

As men tend to die younger than women, two-thirds of those with dementia are women. Age discrimination is gender discrimination! This can mean that care settings for people with dementia may have a greater proportion of woman – both residents and staff. Male residents may feel less comfortable in these environments, and are more likely to be perceived as challenging.

Dementia in learning disability is another area that requires specialist skills – from diagnosis, to helping that person live well. Dementia is more likely to develop at a young age in those with learning disability, especially Down’s syndrome. The observation that people with Down’s syndrome commonly developed dementia in their 40s indicated a link to chromosome 21 and ultimately to the discovery of the amyloid precursor gene.

Dementia is more likely to have a younger onset in black or ethnic minority groups, but these groups are underrepresented in services for dementia. Services need to take active steps to make sure that they reach out to minority communities and tackle barriers in assessment and support. The technical aspects of making a diagnosis have to take into account language, with testing being carried out in the person’s preferred language where possible. Consideration needs to be given to educational background and also the cultural preconceptions embedded in many cognitive tests. Even a simple question like ‘What is the season?’ may be influenced by where an individual is from.

It is common for professionals to classify dementia into three stages of severity; mild, moderate and severe. However, it may be better to think of dementia as a journey a person is moving along, rather than a spectrum of disease severity – from what that individual previously considered as ‘normal’, through noticeable changes in mental skills that become consistent and then clear enough to warrant the use of the term dementia. As the person moves through the different stages of the condition, there is loss of mental skills. Other features may come and go, and quality of life is not closely linked to dementia severity. As an incurable condition, the person’s journey will end in death resulting from dementia or other causes.

The journey of dementia is rarely made alone. Usually, close family support the person with dementia and inevitably their lives are also altered by it. Relatives start to be referred to as ‘carers’, although many are unhappy with that description. Carers’ research commonly states the negatives of this role, such as burden, strain and stress, but there are also the positives. It is more useful to think about how the presence of dementia in a family changes relationships and how dementia is experienced in its entirety. This intricate interplay is addressed in detail in Chapter 6.

Loss of cognitive skills is the core feature of the dementia syndrome, but there is much more to it. A range of non-cognitive features can be experienced.