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Introduction

Read this short extract from ‘Remind me who I am, again’, Linda Grant’s book about her mother, who developed a form of dementia called Multi-Infarct Dementia, also known as Vascular Dementia.

“What was wrong with her? It wasn’t Alzheimer’s Disease but something called Multi-Infarct Dementia or MID, a condition I had never heard of until we were given the diagnosis in 1993 when we thought she was behaving like that on purpose: to seek attention or to drive her two daughters mad. Not Alzheimer’s but she would one day reach the same place, that far-off planet where those without memory live and the rest of us can’t reach. Tiny, silent strokes had been occurring in her brain, mowing down her recollections of what she had said half a minute ago. They were not the kind of strokes that paralysed or blurred her speech, far from it. She was not confined to a wheelchair but could walk for miles.

‘Why do we have to go back now?’ she would complain. ‘I’m still fresh. You know I’ve always been a walker.’”

As you may be able to tell from the extract above, dementia is an umbrella term that is used to describe deterioration in intellectual function, including memory, orientation in time and/or space, language and judgement. Dementia is accompanied by a decline in functioning, both socially and personally.

Essentially, dementia means that a person stops being able to do some of the things they had been able to do before; but it can also mean that people start doing things they didn’t do before. Because dementia is a progressive condition, the early stages can involve relatively small changes until, as Linda Grant implies, the person can become ‘unreachable’. There are four broad stages associated with dementia, ranging from minimal, through mild and moderate, to severe.

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‘Normal’ age-related cognitive changes

It is important to recognise that some cognitive1 change can be expected as a normal part of the ageing process. A good example of such a change is the shift from fluid2 to crystallised3 intelligence.

Most people experience decreased capacity in terms of fluid intelligence as they age. However, this is often compensated for by the vast supply of crystallised intelligence – or knowledge – they may have at their disposal.

1‘Cognitive function’ can be defined as conscious intellectual activity which involves learning, remembering, thinking, perception, reasoning and understanding. These are the types of intellectual activities associated with acquiring and retaining

2‘Fluid intelligence’ is essentially a form of short-term memory that enables people to hold onto information whilst they solve a problem. For example, if you are attempting to map-read, it is fluid intelligence that enables you to keep in mind sections of the route you need to take as you travel.

3‘Crystallised intelligence’ – as its name suggests – is essentially all the knowledge that is stored away, ready to be called upon when needed. For example, when someone is doing a crossword, it is generally crystallised intelligence they are calling upon to answer the clues

Dementia is an organic condition, which means that the deterioration associated with it involves distinctive biological changes. This is why the diagnosis of dementia normally entails the use of brain scans.

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‘Normal’ age-related cognitive changes

Whilst dementia is the over-arching term used to describe intellectual deterioration, it can be caused by several different diseases or conditions. What all of them have in common is the fact that they affect the way the brain functions in some way.

Alzheimer’s Disease - 55%

The most common cause of dementia is Alzheimer’s Disease. It is the cause of dementia in over half of all cases. It is a physical disease involving the death of brain cells, which interrupts the flow of information between different parts of the brain.

Alzheimer’s disease is progressive, in that it gets worse as more of the brain becomes damaged. People with Alzheimer’s disease become more dependent on others for their care as the disease progresses, but the needs of each individual are still unique, requiring careful, ongoing assessment.

Vascular dementia - 20%

The second most common form of dementia after Alzheimer’s disease is Vascular dementia. Like Alzheimer’s disease, Vascular dementia is a physical illness involving damage to brain cells, but this time the damage is caused by problems with the supply of blood to the brain. Sometimes, people with vascular dementia are described as having ‘mini-strokes’ (multi-infarct dementia - as in the extract from Linda Grant’s book you saw earlie in this section), referring to the specific nature of the interruption of the blood-flow to the brain.

Lewy bodies - 15%

The third most common type of dementia is dementia with Lewy bodies. Lewy bodies are basically tiny deposits of protein that collect in the brain and prevent it from functioning normally. As with Alzheimer’s disease, dementia with Lewy bodies is a progressive illness; the symptoms get worse over time.

(Source: Alzheimer’s Society 2004)

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‘Normal’ age-related cognitive changes

The prevalence of dementia increases sharply in older age groups, as this chart illustrates:

The prevalence of dementia
Age Prevelance
40-65 1 in 1000
65-70 1 in 50
70-80 1 in 20
80+ 1 in 5

(Source: Alzheimer’s Society 2004)

The prevalence of dementia in minority ethnic groups is growing as the populations of some of these groups age, just as in the majority population.

As you might expect, a high proportion of people admitted to care and nursing homes have some form of dementia. One of the most robust studies to have been conducted recently found the prevalence of dementia in institutional care to be 62% (Matthews and Dening 2002).

Prevalence - The high prevalence of dementia in these settings reflects:

  • The increased need for safe, 24-hour staffed environments
  • The need for specialist care to ensure that patients are treated appropriately
  • The fact that those with complex physical needs are increasingly likely to be cared for in the community rather than in care homes

Care homes are therefore well-placed to offer a specialist service to older people with demenita.

Perhaps most signigicantly, the total number of people living with dementia in the UK is set to rise sharply over coming years:

Projected Increase

There are currently approximately 775,000 people with dementia in the UK. According to the Alzheimer’s Society (2004), it is estimated that by 2010 there will be approximately 870,000 people, and that this figure will have increased to approximately 1.8 million by 2050.

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Importance of early recognition

Like depression, dementia often goes unrecognised and undiagnosed until the illness has been ongoing for some time. However, whilst professionals are generally in agreement about the benefits of the early diagnosis and treatment of depression, the picture in relation to dementia is more complex.

One study of the attitudes of GPs found that a significant number of them thought the diagnosis of dementia was unhelpful: ‘Dementia is untreatable, so why diagnose it?’ (Audit Commission 2000: 21). GPs have an essential role to play because they act as ‘gatekeepers’ to other services. Although subsequent studies have found some improvements in the early diagnosis of dementia by GP’s (Milne 2005), it continues to be a key issue.

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Importance of early recognition

Arguments in favour of improving the early diagnosis of dementia

  • Some of the less common causes of dementia are reversible, so early diagnosis can ensure these are treated and resolved quickly
  • Early diagnosis means that people can benefit from some of the drug treatments now available, although their effectiveness is still a matter for debate.
  • Some people feel relieved to know what is happening to them and to have a label for it, even if it is bad news
  • Early diagnosis gives people a chance to make long term plans and to be more involved in making decisions about their future whilst they are still well enough (Sources: Wilkinson and Milne 2003; Moriarty 2005)
  • Perhaps most importantly, it can be argued that people have a right to know their diagnosis, as emphasised by Jack:

    “Everybody can take it, everybody can take on an awful lot more than you think. You get it and after you’ve got it, sure, you’re sunk for a bit, and that’s only to be expected, and maybe at that point they say maybe I wish they hadn’t told me, but you realise it’s the best thing that could have happened. They tell you, put your life in order and that’s it. Then if you want to ignore it, ignore it if you wish, but it’s your choice, it’s not the doctor’s choice, or the carer’s choice, it’s your choice, and you should be given that choice.” (‘Jack’ quoted in Pratt & Wilkinson, 2001)

  • Acute infections such as urinary tract infections can sometimes mimic or exacerbate the symptoms of dementia and so early diagnosis can identify if this is the case.

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What do older people with dementia want?

Services do not always meet the needs of those they are intended to serve, as stressed by this carer of an older person with mental health needs:

‘I must stress I have learnt that the only way anything gets done is if you kick and scream. The one who shouts the loudest gets the attention, which is unfair to say the least especially when you follow the rules and do what is required and still get nowhere... The services that he accesses do not cater to his needs. He feels he is being punished and caged. He needs to feel useful doing something that keeps his mind active. He needs Asian people to talk to but there are very few working in the mental health field so communication is limited. At home he has little jobs he does, like putting the rubbish out, cleaning the window sills etc... To my knowledge Social Services have never asked my father to evaluate his experiences of the facilities he uses. I don’t know whether this is due to the language barrier, or the perception that he is unable to articulate his thoughts (it is difficult for him sometimes), or that it is not considered to be relevant.’ (Quoted in Bowers et al 2006: 22)

The following statements summarise the findings from a study that looked at the issue of what older people themselves want from services:

  • Perhaps most importantly, to be treated as an individual
  • Access to meaningful activities
  • Their sense of independence to be maximised
  • To feel valued and respected
  • Access to social contact and the company of other people
  • To feel safe and secure

(Bamford and Bruce 2000, quoted in Moriarty 2005)