‘Dementia’ – it is the diagnosis that everyone dreads. The ‘D’ word is now more scary than the ‘C’ word.
You hear things like this said so often:
‘As long as I don’t go “gaga” I can put up with anything.’
‘My Mum was dreadfully ill at the end – but she had all her marbles.’
‘Poor dear – he’s lost it, you know?’
‘She’s senile – poor thing.’
Dementia refers to a group of related symptoms that is associated with an ongoing decline in many aspects of the brain and its abilities. The symptoms include problems with short-term memory, mental agility, speech and comprehension. People with dementia may become apathetic; they may lose empathy with others; and sometimes they may have problems with movement and eyesight and experience hallucinations. They may find it difficult to plan things, and to carry out the activities of everyday living.
Dementia is a progressive illness which leads to death. It is not a normal part of aging and only a proportion of people who are old will develop dementia.
The most frightening thing about dementia is that we don’t seem to know how to avoid it. You can do your best to avoid a heart attack by exercising and not abusing your body. You can avoid smoking and other carcinogens and hope never to get cancer. You can have your blood pressure tested and take medication to attempt to avoid a stroke. You can keep away from sickness, wash cuts and grazes, and generally avoid infection. You can have a jab against flu and against a myriad of other things which might strike you down and even kill you. But how do you prevent dementia?
Dementia is the ultimate ‘politically correct’ disease. It can strike whether you are rich or poor, dark or fair, religious or atheist, a nuclear scientist or a road sweeper, a man or a woman, obese or underweight. Current research indicates that age is the biggest risk factor for dementia – and mostly we have to grow old.
The fundamental problem is that we don’t yet know what causes dementia – not definitively. Indeed, research seems to indicate that, as with many diseases, there is no one single cause. If you don’t know the cause, you can’t find the cure, as the saying goes. But is that true?
While we do not know a definitive cause, except in the case of a few relatively rare types of dementia, we do know that there are a number of ‘risk factors’ which may increase the risk of dementia developing in any one person. It is these, and the large amount of research into causes and risks, that I review through the course of this book.
It is believed that the risk of developing dementia is affected by a combination of genetic and environmental factors. Everyone is at risk, but some of us more so than others. Because a specific cause is not known, it is also true to say that we do not know what factors do not cause dementia. However, research indicates that it is not contagious – that is, you cannot ‘catch’ dementia from being with someone who has the disease.
In this book you will find I sometimes talk about ‘dementia’ and sometimes about ‘Alzheimer’s disease’. The two terms are not actually inter-changeable. Alzheimer’s disease is just one form of dementia, although it is considered to be the most common. There are probably more than 60 different kinds of dementia. Some of the different types are described in chapter 2, ‘About dementia’, but some of the research quoted in this book specifically refers only to Alzheimer’s disease. To make it clearer, it is possible to have dementia and not to have Alzheimer’s disease, but if you have Alzheimer’s disease, you definitely have a form of dementia. I have not excluded research which only refers to Alzheimer’s disease, because it is likely to have relevance to many forms of dementia.
I have also quoted research originating from many countries. Not everyone uses the same words to describe the same problem. American research, in particular, tends to refer to Alzheimer’s disease in a generic way, whereas in Europe the term ‘dementia’ is used as a global term and Alzheimer’s disease is used only for one specific form of dementia. Most of the information we have and most of the research, is concerned with dementia in all its forms.
Not all of the research is conclusive. The medical fraternity holds firmly to the view that nothing is proven unless it has been through the double-blind trials (see Glossary) which govern the release of new drugs. As with any disease where the cause and cure are unknown, there are many opinions, theories and viewpoints which would not be considered to be robust evidence because they have not been trialled in this way. I have taken the view that readers of this book may nevertheless be interested in some of these opinions, theories and viewpoints, and in some of the treatments which have empirical evidence behind them. These ideas and viewpoints are not ‘evidence based’, but people who support those with dementia and their carers come across many ‘connections’ and cannot help finding them of interest.
We know that there is sometimes a genetic connection. Dementia, or a pre-disposition to dementia, can run in families, especially something known as ‘early-onset dementia’. The three genes that have a major effect on risk of early-onset (that is, younger than 65 years old) Alzheimer’s disease are called the ‘amyloid precursor protein (APP) gene’ and the ‘presenilin genes’, of which there are two (PSEN-1 and PSEN-2). People with any of these genes tend to develop the disease in their 30s or 40s, and come from families in which several other members also have early-onset Alzheimer’s disease. On average, half of the children of a person with one of these rare genetic defects will inherit the disease. It is believed that all those who inherit the genetic defect develop Alzheimer’s disease at a comparatively early age. People who do not inherit the disease cannot pass it on. If you have this dementia risk, it is very likely that you are already aware of it as you will have relatives who have developed the condition. This is a rare form of dementia.
It is much more common for people to develop dementia later in life. We all have two copies of another gene – the ‘apolipoprotein E (ApoE) gene’ – which is implicated in the development of dementia in later life. The two copies may be the same as each other or different, and the variations in combination affect the risk of developing dementia. This is described in more detail in chapter 2. As I explain there, the effect of the ApoE genes seems to be more subtle than the genes affecting early-onset Alzheimer’s disease, and even individuals with two copies of the risky form of the gene are not certain to develop Alzheimer’s disease. It follows that these genes and their combinations in each individual are not the complete story. As further research takes place more genes are being linked to the risk of developing dementia.
Quite separately, people with intellectual or learning difficulties are more likely to develop dementia than others. In particular, people with Down’s syndrome are very likely to develop dementia in mid-life. This has been known only for a relatively short time as it is only recently that people with Down’s syndrome have lived beyond mid-life as a general rule. The higher risk of Alzheimer’s disease in people with Down’s syndrome may be related to the genetic (or rather ‘chromosomal’) factor behind the syndrome – chromosome 21. A protein called ‘amyloid beta’, which is implicated in Alzheimer’s disease (see chapter 2, page 19) is produced from a gene on chromosome 21, and people with Down’s syndrome have an extra copy of this chromosome.
We know a lot about ‘connections’. There are connections between physical disease and dementia. Some quite rare physical diseases may lead to dementia as a complication of the disease, or sometimes as a progression of the disease. This connection is only briefly covered in this book because the dementia develops as a result of the primary illness and is not a separate disease. However, although there is no absolute proof, there are research papers which seem to indicate connections between a number of physical diseases and the later development of dementia. Of these diseases, the most prominent in the researched evidence is diabetes. Indeed, the evidence of a connection between diabetes and dementia is so well documented and accepted that some scientists even consider Alzheimer’s disease to be a third form of diabetes. This is explored in chapter 8.
Other physical diseases are sometimes implicated in the development of dementia in particular cases. The evidence is not always clear enough to indicate that physical disease is the certain cause, but relatives and carers often pinpoint an illness as the beginning of cognitive difficulties, and unofficially many doctors would agree with them.
There are some well-researched connections between some types of mental illness and dementia, and there are some more tenuous connections. I explore these also in chapter 8. Depression seems to be heavily implicated as a pre-cursor to dementia, but it is not completely clear whether the depression is a cause of the dementia or perhaps a result of it. There is a quite a large body of research in this field and it appears that those who have suffered from depressive illness in their past (especially if the depression was difficult to resolve) have a higher than average chance of later developing dementia. Research into connections with other mental illnesses is referred to in this book, but there is much less evidence to support a connection.
Many relatives of people with dementia mention that the first intimation that something was awry occurred after a trauma, or injury, physical or psychological. In the case of physical trauma, this can include undergoing surgery. I explore the connection with trauma in chapter 7.
It is known that physical trauma to the head can sometimes lead to dementia. As well as the commonly known Dementia pugilistica which results from frequent blows to the head and which can be experienced by boxers and some other athletes, a single head injury may result in dementia, either as an immediate consequence of the injury, or at a later date, although this is certainly not inevitable.
A series of strokes can lead to dementia, and these strokes may not necessarily be major events. A number of small transient ischaemic attacks (TIAs) or ‘mini-strokes’ may lead to what is known as vascular dementia. Some doctors think that a vascular ‘event’ is also what triggers the beginning of Alzheimer’s disease.
The effect of psychological stress is more difficult to determine, but there is some research evidence to suggest that psychological stress experienced in childhood may increase the dementia risk in later life. Work-related stress in mid-life has also been implicated as a dementia risk. Post-traumatic stress disorder has been heavily researched, particularly amongst service veterans in the USA, and the evidence suggests an increase in the risk of developing dementia in those who have experienced significant stress. There is some doubt amongst scientists as to whether stress is a dementia risk (possible cause) in itself or whether the type of person who suffers stress is actually more likely to develop dementia later on. There is a subtle difference.
We do know that stress has a bad impact on anyone who has already been diagnosed with dementia. Such an individual will already be experiencing stress in simply trying to carry out the activities of everyday living. Additional stress in the form of pressure from carers, unexpected events, or the inevitable minor traumas of life, can all seem to make any dementia appear worse. There is also the problem that, as memories are lost and people with dementia start to ‘live in the past’, stress suffered earlier will resurface and give additional cause for concern.
Some lifestyle factors are known to increase the possibility of developing dementia in later life. There is some evidence that smoking is a specific risk factor, and the known risks of smoking as a cause of other diseases (some of which are risk factors for dementia themselves) are sufficient to suggest that this is a habit best avoided. The evidence against alcohol is more equivocal and there seem to be definite risk factor differences between light/moderate and heavy alcohol consumption. Other ‘recreational’ drugs are likely to lead to health problems before dementia may develop.
A great deal of research has been done into whether differing diets make people more likely to develop dementia. Chapter 6, on nutrition, examines this research and you might find some of the actual evidence in this field quite surprising in view of the widely disseminated and commonly believed suggestions that fat is bad for us, that a certain cholesterol level is ‘normal’, and that our diet should be heavily starch-based. There has also been some significant research into the use of certain food supplements to stave off or to treat dementia. Unfortunately, many initially exciting lines of research, which are often heavily publicised in the national press, have been later found not to bear out their initial promise. Some vitamin supplements may be worth trying, however, as there is some, though limited, evidence to show they are efficacious.
People who have been diagnosed with dementia often suffer from changes in appetite and weight loss. Chapter 6 also suggests how to help these individuals, and how to ensure that they have optimum nutrition despite a possibly varying appetite.
Many doctors think that dementia tends to develop more frequently in people who have a particular kind of personality and some interesting research has been done in this field. Relatives of those with dementia speak often of a ‘personality change’, but generally doctors disagree with this idea and suggest rather that dementia emphasises personality traits which are already present and which may have been suppressed or kept to socially acceptable levels in the past. A solitary lifestyle, avoidance of society and an introverted personality type have been implicated in some research, which I discuss in chapter 3.
There are some interesting pieces of research which sometimes seem to contradict each other. For example, having a spouse is said to mitigate against developing dementia, but the spouses of those who have dementia have an increased risk of developing dementia themselves. Contradictions like these are common in research and I endeavour to make some sense of them where possible.
Chapters 3 to 8 are devoted to risk factors. You may be wondering if there are any positive things you can do to prevent or reduce the possibility of developing dementia. The evidence seems to suggest that there are lifestyle changes (as mentioned above) and positive actions that you can take. I include these in each chapter and also pull together all the interlinking findings in the final chapter, ‘If you are worried you are developing dementia’.
A body of research indicates that, up to a point, level of education makes a difference to the dementia risk. However, all the indications are that the improvement to risk relates to a minimum level of education; the evidence does not suggest that a higher than average education necessarily reduces risk further. There is some empirical and researched evidence, though, that those who have a brain with more ‘plasticity’ may not manifest the outward signs of dementia even though they have the physical signs in the brain. Plasticity in this respect does not refer to a general idea of high intelligence or education, but to the ability to utilise different areas of the brain, and the willingness to learn new things and accept new experiences. Scientists now believe that some older adults are adept at recruiting additional cognitive resources and that this reflects a compensatory strategy. In the presence of the age-related deficits and decreased ‘synaptic plasticity’ (see Appendix I, ‘The brain – a simple description as it relates to dementia’) which accompany aging, the brain manifests plasticity by reorganising its neurocognitive networks. Studies show that the brain reaches this functional solution through the activation of alternative neural pathways, which most often activate regions in both hemispheres (when only one is activated in younger adults). I discuss this research in chapter 4.
We can all make an effort to extend our experiences and knowledge and to do things which are thought to increase the brain’s plasticity. The same research into the value of education also frequently covers the effects of social intercourse, experience of life and varied interests and suggests that these factors play an important part in decreasing the dementia risk. At any stage in life we can broaden our horizons, try to extend our social network and take an interest in things around us. Complex things, such as learning a new language, beginning to play a musical instrument or taking up a card game such as Bridge, will all exercise the brain and extend the neural pathways. Even simple activities, such as visiting new places, having interesting conversations or choosing to read a different genre from normal, are thought to be beneficial. Older people often avoid learning or doing new things because it is simply easier to follow old habits. We frequently talk of people being ‘stuck in their ways’. If you seriously wish to try actively to avoid dementia you should do your best not to be one of those people.
As well as exercising our minds, the most positive thing that can be done is to exercise our bodies. Research seems to indicate that physical exercise may even be more beneficial than so-called brain exercise in reducing the dementia risk. A number of studies have even suggested that carrying out physical exercise has an effect on brain plasticity. It seems possible that exercise acts directly on the molecular structure of the brain itself and that the beneficial effects are not simply connected with a general benefit to overall health. Some research has indicated that exercise actually strengthens the neural structure, helping the neurons to make connections with each other and thus increasing brain plasticity. It even seems from this research that the number of different types of exercise performed is inversely associated with the onset of cognitive impairment. It may be that whilst exercise of any kind is beneficial, the number of different types makes even more difference. It is, of course, possible that taking part in a greater variety of exercise means that people get more social and cognitive stimulation in addition to the beneficial effect of exercise upon the brain – in effect, killing two birds with one stone.
You may be reading this book because you fear you are in danger of developing dementia; or you may be worried that someone you know and care for is having memory problems and that dementia may be the cause. There is a recognised condition known as mild cognitive impairment (MCI) which is now being increasingly mentioned by the medical profession. This is not dementia, but is a condition where some of the features of dementia (mainly memory problems) manifest themselves. It is thought that people with MCI have a higher risk of developing dementia later on. Perhaps you or someone you care for has been diagnosed with this MCI and you are wondering if anything can be done? Generally, if you have this diagnosis, your doctor will not consider it necessary to review your condition at regular intervals and will simply advise you to come back for further tests if your symptoms get worse. There are, however, actions you can take in the meantime that have been shown to be protective. In addition, most of the actions which are thought to reduce the risk of developing dementia are also potentially efficacious in slowing the progress of the disease.
Because we do not yet know the cause of dementia, we cannot truthfully be sure how to avoid developing it. What this book does is explain what the risk factors are thought to be and point to research which suggests how we can ‘lower the odds’, in the light of current medical knowledge and experience. Each chapter explains how you can modify the individual ‘risk factors’. Put simply, if you are worried that you are at risk of dementia, this book explains how you can help yourself. If you are caring for someone with a confirmed diagnosis, then each chapter explains how you can use the knowledge that we do have about dementia to look after this person and improve his/her quality of life.
I hope you find this book useful and pertinent, and I wish you the best of luck.