Stephanie J. Fuller and Ralph N. Martins
What Is Alzheimer’s Disease?
When somebody mentions Alzheimer’s disease, for many people this conjures up thoughts of an elderly relative in a nursing home or perhaps a spouse or grandparent whose memory and behaviour have deteriorated over time. People may also have memories of the tension and challenges these problems have created for the rest of the family. The fact that most of us know, or have heard of, somebody with Alzheimer’s disease, shows just how common this condition has become.
Alzheimer’s disease is often called ‘old-timer’s disease’, because it mostly affects the elderly, but despite what many people used to think, it’s not a necessary part of ageing. If your mind and memory are not working quite as quickly or as well as they used to in your 30s, this is no reason to panic – some slowing down of mental capacity will happen to most of us as we age. The fact is, most people won’t get Alzheimer’s disease or any other form of dementia as they get older.
What Is Dementia?
Dementia can be defined as a progressive decline in mental function beyond what is considered a normal part of ageing. It is more formally defined in The Diagnostic and Statistical Manual of the American Psychiatric Association (1994) as: ‘The loss of intellectual abilities of sufficient severity to interfere with social or occupational functioning.’ The word ‘dementia’ itself has Latin roots and literally means ‘without mind’. Since this term has Latin roots, this is an obvious clue that dementia is not a new problem – it has been puzzling doctors and scientists for a long time. In fact, mental dysfunction and dementia were described in detail by the Ancient Egyptians and Greeks.
Dementia is not about forgetting where you last left your wallet or keys, or the time of an appointment. Dementia involves the serious loss of several mental faculties. Several different conditions and illnesses can lead to dementia, but different conditions will lead to different sorts of dementia. Generally, though especially in the elderly, most forms of dementia are progressive. In other words, symptoms gradually get worse over time.
In Alzheimer’s disease, dementia develops slowly and includes a wide variety of symptoms such as memory loss, an inability to learn new information, abnormal reasoning, language problems, loss of judgement, disorientation and mood changes. After a few years, the condition finally develops into dementia (see above). Alzheimer’s disease is in fact the most common form of dementia.
The condition has a slow, subtle onset, and usually affects short-term (recent) memories first. This isn’t always the case though. In some instances, behavioural changes, anxiety and/or depression may occur first or in parallel with memory changes. In most people, however, memory loss is followed several months or sometimes even years later by changes in behaviour and speech, and an inability to deal with normal day-to-day living, and all of these get progressively worse.
It’s very difficult to determine in the early stages if the changes in memory and intellect are just due to ageing, or to a degenerative condition such as Alzheimer’s. Often it will take just one unusual event or lapse of memory to make people aware that something may have been amiss for a long while. Thus, over the course of time, Alzheimer’s disease symptoms become noticeably different from what people normally think of as an age-related slowing of mental and physical abilities. These changes gradually affect daily living tasks and routines. Eventually the deterioration in independent living skills occurs to such an extent that outside help and supervision are required. By this stage, a diagnosis of early stages of Alzheimer’s disease has usually been made, because close family members or sometimes the person affected will have become very concerned about the changes.
The symptoms and the stages of Alzheimer’s disease are described in detail in Chapter 1, which also includes a chart to help distinguish between normal memory lapses and memory problems that may be associated with Alzheimer’s.
Other types Of Dementia
Alzheimer’s disease is the most common cause of dementia in the elderly, accounting for about 50–70 per cent of dementia cases. Other common causes of dementia include vascular dementia, Parkinson’s disease and Lewy body dementia.
Vascular dementia can be caused by one large stroke, a series of small strokes or by the narrowing of arteries supplying blood to the brain. The common factor is that blood vessels are damaged, which disrupts blood supply, and this means less oxygen and fewer nutrients reach some parts of the brain. If the disruption is severe enough, this can cause permanent damage or death to some brain cells, thus leading to dementia.
The most common vascular dementia is caused by a number of small strokes, called mini-strokes or transient ischaemic attacks (TIAs). This is known as ‘multi-infarct’ dementia (multi = many, infarct = dead tissue due to lack of oxygen). The strokes often reduce blood supply to areas in the cortex of the brain (see Chapter 1) associated with learning, memory, language, vision and movement. These mini-strokes are often a warning sign of an imminent larger stroke, and symptoms can include headache, memory lapses, problems with speech, eyesight and/or reasoning, and some level of paralysis on one side of the body. These symptoms clearly overlap with those of Alzheimer’s disease, but since the treatments for these conditions are different, it’s important to obtain a proper diagnosis.
Lewy body dementia has similar symptoms to Alzheimer’s disease, but usually has a more rapid onset. The ‘Lewy bodies’ are abnormal spherical structures that develop inside nerve cells in the brain, and the dementia is caused by the degeneration and death of these cells. Lewy body dementia can also occur in association with Alzheimer’s, or (more commonly) with Parkinson’s disease.
People with Parkinson’s experience physical symptoms such as hand tremor, limb stiffness and general clumsiness long before any symptoms of dementia appear. This reflects the fact that although the brain is also affected in Parkinson’s disease, the part of the brain that is damaged first is responsible for the control of movement. The majority of people with Parkinson’s disease don’t develop dementia, but a significant proportion – up to 30 per cent – do. The cause of dementia in people with Parkinson’s disease is quite different from the cause of dementia in Alzheimer’s disease, and different parts of the brain are affected in these two conditions in the early stages. This is partly why there are such large differences in early symptoms of the two conditions.
Another form of dementia, called dementia pugilistica, can be brought on by head injury, especially repeated head injuries over many years. Ex-boxers, ex-wrestlers and some football players, for example, have a high risk of this form of dementia in later life.
Another form of dementia is linked to mad cow disease (bovine spongiform encephalopathy, or BSE for short). BSE reached epidemic proportions in cattle in the United Kingdom in the 1980s, and it was found that it could be passed on to humans – although luckily this rarely occurs. More than 4 million cattle in the United Kingdom alone were slaughtered to stop the spread of this condition. In humans it is known as variant Creutzfeldt–Jakob disease, which is completely different from Alzheimer’s disease. Alzheimer’s is not transmissible – you can’t catch Alzheimer’s from someone who has it.
Who Does Alzheimer’s Disease Affect?
Alzheimer’s disease can happen to anybody. There is a slightly higher incidence of Alzheimer’s disease among women than among men in any particular age group, but the most important fact is that the risk of dementia increases with age quite dramatically once you’re over 65. As mentioned earlier, dementia is not something that will happen to everyone ‘if they get old enough’, as some people believe. Plenty of centenarians will tell you otherwise!
Some eminent and famous people have had Alzheimer’s disease, such as former US president Ronald Reagan, actors Rita Hayworth and Charlton Heston, and Irish writer Iris Murdoch. Hazel Hawke, an Australian former first lady, recently died after suffering from Alzheimer’s disease for 10 years. Apart from being a formidable support to Bob Hawke, she strongly promoted welfare, women’s and children’s issues, indigenous Australian issues, conservation of the environment, and the arts. She was also an accomplished pianist, who was once invited to play at the Sydney Opera House. After her diagnosis of Alzheimer’s in 2003, she worked passionately to promote awareness of the condition, to remove the stigma of dementia, and to raise funds for research into Alzheimer’s disease.
Alzheimer’s disease starts to become common in the 65 and over age group. The incidence goes up almost exponentially as people age – about 6 per cent of people aged 65–74, about 20 per cent of people aged 75–84, and more than 40 per cent of people aged 85 and over have Alzheimer’s disease. Although more than 50 per cent of people in the 85-plus age group won’t have Alzheimer’s disease or any other form of dementia, these statistics are nevertheless worrying for government health departments, given our ageing population. Dementia is currently the second-largest cause of disability burden (a measure of how much a condition deprives the population of healthy years of life during a particular period of time) after depression, and a huge increase in the number of elderly people will also mean a huge rise in the number of people who may get Alzheimer’s disease. The financial burden of caring for the elderly will increase substantially over the next few decades, as caring for people with Alzheimer’s disease often involves many years of care in a nursing home. Alzheimer’s disease indirectly affects the lives of nearly 1 million Australians who are involved in caring for family members or friends living with dementia.
A small number of people who develop Alzheimer’s disease (less than 3 per cent of all cases) inherit it due to a genetic mutation. This is known as the ‘early-onset’ form of Alzheimer’s disease. As suggested by the name, people with early-onset Alzheimer’s disease show symptoms much earlier than most, from the ages of 30 to 60. These people also develop a more severe form of the disease. Their symptoms are exactly the same but get worse at a faster rate than in the more common ‘sporadic’ form of the condition that affects older people. Many different mutations have been identified that cause early-onset Alzheimer’s disease. If some of your family members carry such a mutation, it’s highly likely you’re already aware of this – this is because it is very unusual to develop Alzheimer’s at an early age, and once other possible causes of early dementia symptoms have been ruled out, a team of medical specialists will have investigated the possibility of a mutation that causes Alzheimer’s. However, even if someone with a family history of early-onset dementia develops Alzheimer’s under the age of 60, they don’t definitely have an early-onset mutation – it’s just more likely that they do.
People with Down syndrome also get Alzheimer’s disease at an earlier age than most people, due to the extra genes that are the cause of their Down syndrome. If you’re interested in reading and understanding more about the genetics of Alzheimer’s disease, it’s discussed and explained in more detail in Chapter 3.
Apart from the small number of people who will inherit the early-onset form of Alzheimer’s, there is currently no way of telling who will get Alzheimer’s disease and who won’t. Some factors will, however, increase the risk of developing Alzheimer’s disease (see Chapter 4) and there are things you can do to reduce this risk, or at least delay the onset of symptoms – these are discussed in Chapters 5, 6 and 7. This book has plenty of guidelines and strategies to help you maximise your defence against Alzheimer’s disease.
Some sobering statistics and future projections
In Australia in 2010, there were 269,000 people with dementia. This number is expected to rise to 981,000 by the year 2050 unless there is an amazing medical breakthrough. Each week, 1500 new cases of dementia are diagnosed in Australia. Most of these are Alzheimer’s disease cases. By 2050, this rate is expected to reach 7400 new cases per week. Currently, one in four people over 85 have some form of dementia, and dementia is the third leading cause of death in Australia, after heart disease and stroke.
An increase in dementia cases is expected because the proportion of people aged 65 and over in our population is clearly increasing. The financial and emotional cost to the community is also obviously going to parallel the marked increase in the ageing population. Dementia is often a major factor in the decision to live in some form of residential care. In Australia, about 60 per cent of people living in high-care facilities and 30 per cent of people in low-care facilities have dementia of some sort. The cost to the Australian government in the form of community-care packages and residential-care places was $11.1 billion in 2010. This has been projected to grow to somewhere between $59.6 billion and $94.2 billion by the year 2050.
Family carers currently provide 80 per cent of the value of informal care without compensation, yet this care is likely to decrease. This is partly because our population growth is slowing and partly due to the postwar baby boom: simply, there will be fewer family members available to look after more elderly people. This informal care is also likely to decrease due to changes in our society – people are less willing or able to help elderly relatives themselves, and more likely to resort to residential care. Other indirect costs include loss of earnings from loss of employment or absenteeism, which is estimated to be in the hundreds of millions of dollars per annum.
Caring for someone with Alzheimer’s disease can be a very emotionally and physically draining experience. Advice concerning the various stages of caring, from coping with the diagnosis to dealing with potential psychological problems, is detailed in Chapter 10. While the afflicted person may benefit greatly from being able to remain in a family home with loved ones caring for them as long as possible, the carers can suffer from the increasing stress involved. There are many support resources that can help such carers on many levels, from providing practical or medical information to respite care and legal advice. These are listed at the end of the book (see ‘Where to get help’).
Alzheimer’s disease is a worldwide problem
Alzheimer’s disease affects a greater proportion of people in developed countries because improved health systems have resulted in longer lifespans. In developing countries, improvements in health services are doing wonders for decreasing death caused by diarrhoea and tuberculosis, for example, but unfortunately the elderly in these countries are just as susceptible to Alzheimer’s disease as we are in Australia. Around the world in 2008, about 30 million people had dementia. This number is expected to rise to 80 million by 2050. There will be about 4.6 million new cases of dementia each year. Even now, most of the people with dementia live in developing countries. Although the number of people with dementia in developed nations will increase by a factor of two or three over the next 40 years, the number in India, China, South-East Asia and the Western Pacific will increase by a factor of four.
How do you get Alzheimer’s disease?
As mentioned earlier, Alzheimer’s disease is not catching – it’s not a contagious virus or bacterium. The brain damage that occurs in Alzheimer’s disease develops over decades, and is still not completely understood. As we also mentioned earlier, less than 3 per cent of Alzheimer’s cases are due to rare inherited genetic mutations, but this does not apply to the other 97 per cent of cases. The problem for researchers is that the condition develops for many years in the brain without causing any symptoms, so a lot of research is now being done to ascertain the series of changes that occur before the onset of symptoms. We do know what brain damage will be found by the time somebody shows the first symptoms of Alzheimer’s disease, but the steps and changes that have happened before this are still not properly understood – and these may not be the same from one person to the next. By the time someone is developing Alzheimer’s, they’ve more than likely had one or more other illnesses, conditions, injuries, infections, heart problems, and so on, and been taking associated medications, all of which may have had some effect on their brain function and development of symptoms.
We do know that one or more of the proteins (large biological molecules you make in your body to carry out specific tasks) in the brain start to behave irregularly in people who are developing Alzheimer’s disease, and most likely do so for many years before symptoms appear. Recent advances in brain-imaging technology have allowed us to recognise these changes up to 20 years before the onset of symptoms, which provides hope for effective early intervention programs in the future. At the start of Alzheimer’s disease, it appears that our normal metabolism ceases to work as it should, and the normally carefully regulated events in our body go out of balance. This is explained in some detail in Chapter 1. For a brief history of the study of Alzheimer’s, see Chapter 2.
Can Alzheimer’s disease be treated?
Unfortunately there’s no cure for Alzheimer’s disease and, for the moment, there are no treatments for its underlying cause(s). Some treatments can alleviate some of the symptoms for a while – these are described in detail in Chapter 8.
While medications are being developed to treat symptoms more effectively, many are being tested with the aim of preventing the disease process in the brain, and thus preventing the illness from getting worse, or even from developing in the first place. Many promising drugs and therapies are already in late stages of research and clinical trials, providing promise for the future. These are detailed in Chapter 9.
Can Alzheimer’s disease be prevented?
Genetic studies, laboratory-based studies and long-term studies of ageing people and their diets, levels of exercise, weight, medication and other illnesses have led researchers to identify many factors that influence the risk of developing Alzheimer’s disease. None of these risk factors means you definitely will or won’t get Alzheimer’s disease, but they do influence the likelihood of developing the disease.
The encouraging news is that we can make changes that will potentially lower our risks. In other words, before Alzheimer’s disease gets a chance to rear its ugly head, and while we wait for the drugs currently being trialled to get onto pharmacy or supermarket shelves, there are tactics that can be adopted right now to help reduce the risk of Alzheimer’s disease. Lifestyle, diet and exercise (both mental and physical) habits are thought to have a strong influence on the likelihood of developing Alzheimer’s disease, and changes in these habits may help delay disease onset. For strategies to keep your brain as active and as healthy as possible in your later years, read on.
Personal story: Wish you were here
Our daughter’s birthday card to her mother read: ‘Happy birthday, Mum. I wish you were here.’ Tears burned my eyes, for I, too, shared that wish. But my wife is with us physically.
The ‘thief of the mind’, dementia, has progressively over the past 10 years, stolen, first her independence, and then the names and treasured memories she had of her family. Six years ago she lost the power of speech because, according to our young granddaughter, “Someone turned off the ’lectricity in her head”.
In 2006, on my birthday and the first day of my official retirement, my wife was diagnosed with cancer. A week later she suffered the first in a series of grand mal seizures – the first one so severe that it fractured her shoulder in two places. Thanks to the skills and techniques of modern surgery, her cancer was successfully treated. But those skills and techniques cannot restore her memory.
In the quiet, early hours of the morning I question why, of all people, this kind, gentle and generous woman that I have known and loved for 57 of her 67 years should have been treated so.
I find no answers, but what I do know is that her trust, her dignity and her ever-familiar smile bring immense joy (and, yes, the occasional tear) to those who know, love and care for her in the home we have shared since our marriage 45 years ago.
A crisis of care
On first reading this you may think I am pleading for hundreds of millions of dollars to be allocated in future health budgets to find a cure for dementia – or, better still, to prevent it.
I am a realist and know full well that it is not likely in my lifetime (though I wish it were otherwise). It will take a fundamental change in our society and politics for the needs of dementia sufferers and their carers to rate as a national issue. Were we dealing with the theft of property and not the theft of memories, I am certain the issue of dementia would quickly become a political priority.
I regret that in my lifetime our society seems to have become less caring and I fear that we will soon have a crisis of care for the thousands of dementia sufferers – many of whom have early-onset symptoms and will need years of constant care. Already the vast majority of those with dementia are cared for at home by ‘volunteers’ (family members) with the help of dedicated respite carers. For the family volunteers it is a 24-hours-a-day, seven-days-a-week commitment of love. But, unless we develop practical ways of encouraging and teaching the majority of our youth to show greater compassion, commitment and care for others – particularly the less able, the disabled and elderly – it seems inevitable that we will have a crisis.
Not just the aged
There are nowhere near enough dementia-specific facilities for the tens of thousands of present-day sufferers – and even fewer designed specifically for younger dementia patients. Contrary to general belief – and I was one of those who believed – it is not confined to the aged. Even those in their 30s can be victims of ‘the thief of the mind’.
An estimated 1500 Australians are diagnosed with dementia each week and, tragically, by the middle of this century it is forecast to be the single largest disability our nation has to contend with – unless our dedicated researchers find a means of treating and, hopefully, curing the disease.
I have tried, many times, to put on paper the experiences Ricky and I have shared in the past few years as she has drifted further and further into a space and time that neither I, nor anyone else, can share.
One of her oldest and dearest friends wrote recently to say that it is perhaps fortunate that Ricky does not know what has happened to her. But there are fleeting moments when I believe she does know, and that makes it so much harder for us both. Sometimes I will catch her looking at me and tears well in her eyes, and I am certain that she has had a moment of clarity that kindles a memory. What is even harder for me to bear is that as that moment passes she will smile, as though to reassure me – to say, without words: ‘It’s all right, my darling. Don’t you cry, my tears are enough for both of us.’ The pain that I feel reaches to my very soul, and I wish, once more, to hear her voice; to have her reach for my hand and to press it to her cheek; to have my hug or kiss returned.
Increasingly, I find myself playing, over and over again, snippets of video that I took of Ricky, to hear precious seconds of her voice and to see her so full of life. Many times I have questioned why she, of all people, should have suffered so cruelly – robbed of reliving wonderful memories shared with friends and family, and especially the joy of being surrounded by her grandchildren. But deep in some recess of her mind, I pray that Ricky knows that she is loved.
Excerpted from Understanding Alzheimer’s by Professor Ralph Martins. Copyright © 2013 by Professor Ralph Martins.
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