Mind Your Brain: The Essential Australian Guide to Dementia

Index

Introduction

In Australia, over 400,000 people are known to have dementia. This number is projected to increase massively over the coming years and decades, as we are living longer than ever before. Globally, the numbers are even more mind-boggling: 50 million people are known to have the condition, and it is estimated that by 2050 this figure will have trebled.

At its heart, though, the experience of dementia is a profoundly personal one, not only for the person with the condition, but also for the many others around them – family, friends and other carers. The condition can throw lives into chaos and force us to make big changes and difficult decisions. For these reasons, and because it is a condition we cannot cure, there is a preponderance of negative emotions associated with dementia – anxiety and stress, pessimism, despondency and sometimes even despair.

Yet humans have a remarkable capacity to adapt to difficult circumstances, and I have frequently been impressed by how well patients of mine cope when dementia is confirmed. My experience as a medical specialist in the field of memory loss and dementia suggests there are several critical factors in coping successfully. These include:

Knowing all you can about the condition

Knowing that you are doing all you can to help

Feeling competent to face the challenges that arise

Knowing when and how to access support.

If you are a carer, looking after yourself as well as the person you are caring for is also vital.

Mind Your Brain aims to provide advice on all the key issues related to dementia. Many patients and carers I have worked with have started out with little understanding of these issues, some of which are fundamental. This is reflected in the questions I am frequently asked:

How can I protect myself against memory loss and dementia?

What even is dementia? Are Alzheimer’s and dementia the same thing?

What are the symptoms of the condition and how does it progress?

How long will I live once I have the condition?

What else might be causing my problems with thinking? Could it be reversible?

How can I best help someone who is experiencing dementia?

My experience has also shown me there is an abundance of myths concerning the condition, including:

That we will all get dementia in the end

That if you don’t have memory loss, you don’t have dementia

That if someone in your family develops dementia, you will get it too

That there’s nothing you can do about dementia, so there’s no point being assessed for it.

My goal in writing this book is to empower those experiencing dementia and those caring for them with knowledge and advice. It will also be of value to those concerned they might develop dementia in the future. Once you know what you are dealing with, it is easier to make plans and manage the situation.

The information contained within this book comes, in the main, from three sources: first, my informed reading of the vast and increasing literature on the topic (there is a wealth of research available online that ensures clinicians are up to date and making evidence-based decisions); second, regular discussions with my medical and allied health colleagues, many of whom have given me invaluable advice over the years; finally, and of equal importance, the conversations I have had with those experiencing dementia, as well as with their carers and loved ones. I have learnt much from them – how they have managed to cope, what has worked and what hasn’t, what their biggest fears are, what they really want to know, and what help they need. I hope that sharing this knowledge through this book will make the journey of dementia easier for those embarking upon it.

The message implicit in this book is that there is hope. Yes, there are some inescapable and unpalatable truths – dementia is permanent and, on the whole, gets worse with time – but there is much that can be done to reduce the risk of developing dementia, to delay its onset, and to make the journey easier once it is established. It is not all doom and gloom. Many individuals (and their loved ones) can enjoy long periods of contentment and a good quality of life despite the progressive nature of the condition. There are ways to improve memory and other cognitive skills in dementia, or at least to make the most of what we have. Likewise, there are treatments available to manage the physical and psychological symptoms that frequently accompany the condition. To avoid unnecessary suffering, it is critical to be informed about these matters.

My intention with this book is to spread this message of hope, and to provide practical tips for the person experiencing dementia as well as those involved in their care. Of course, dementia is a medical illness, and so its confirmation involves consultation with medical professionals, whether that be the local family doctor or a specialist. Importantly, this book is not intended to replace that process, but to augment it – to help you understand the approach that is taken, and to guide conversations that you may have with your doctor.

Although this book is written from an Australian perspective, and some of the advice relating to legal issues, respite and residential care will differ from country to country, I have tried to ensure that it is as universally applicable as possible, and that the large majority of the information it contains is relevant wherever in the world the reader may be.

How to use this book

The structure of this book recognises that different readers will come to it with different needs and goals, so I have endeavoured to make it as user-friendly as possible. The book therefore has two main parts.

Part One explores the science of dementia: how the healthy brain functions, how it changes as we age, the causes of cognitive decline and how to prevent it, and what dementia actually is. It also describes the main types of dementia: Alzheimer’s disease, vascular dementia, frontotemporal dementia, alcohol-related dementia and forms of predominantly subcortical dementia.

Part Two focuses on the lived experience of dementia, in all its aspects: being assessed and diagnosed, the symptoms of the disease and treatments for them, the physical and psychological challenges dementia can pose, as well as practical life changes that can maximise individuals’ comfort and happiness. It discusses legal and ethical issues around dementia, residential care options, and dying and end-of-life care. This section of the book also explores how to manage as a carer. Although looking after someone with dementia can be difficult and distressing, much can be done to make the situation easier.

The appendices offer further information about organisations, websites and other resources that may be of value to those with dementia or those caring for them.

PART ONE

Understanding

Dementia

SECTION I

The Healthy Brain

1

How the Brain Functions

The brain consists of many billions of nerve cells that interact with each other via electrical and chemical messages.

The brain can be divided into two halves, each containing four lobes with different but overlapping functions. These make up the cortex of the brain.

Deeper in the brain are subcortical structures that influence movement, emotions and certain types of memory. Some parts of the subcortex also function as our life-support system.

Dementia can affect any of the structures of the brain, whether cortical or subcortical.

The brain is responsible for our cognitive abilities – processes that allow us to understand and manipulate ourselves and our environment. Cognitive functions include attention, memory, orientation, language, calculation, praxis, gnosis, visuospatial skills and executive abilities. All may be affected by dementia.

The brain is responsible for all that we do, and arguably all that we are. It controls human functions as basic as breathing, movement and sensation, and is critical for the optimal performance of all our bodily systems, such as those involving the heart, hormones and the gut. On a more profound level, our brain allows us to think, and to interact with the world and people around us. It is responsible for creating our sense of who we are.

Of course, as with all other parts of the body, aspects of normal brain function can go wrong. Unless we know how something is supposed to work, it is impossible to tell why things malfunction. This is as true for something as complex as the human brain as it is for something far simpler, such as the engine of a car. It may be obvious that something is not right – the car does not start, or we cannot recall what we have done in the recent past – but unless we know how the different components of each system contribute to the overall function, we can only guess at the source of the problem.

This chapter explains how the brain’s various parts operate and interact with each other. (It is easy to get lost in the rabbit hole of neuroanatomy and neurophysiology, though, so I have kept the discussion relatively simple.) It also summarises the skills enabled by the brain that allow us to function within our complex physical and social environment. It is the degradation of these cognitive skills that underpins the problems we see in dementia.

A mass of circuitry

The brain weighs, on average, 1.3 to 1.4 kilograms, slightly more in males. This equates generally to about 2 per cent of our body weight, though it is so active it uses 20 to 30 per cent of our energy needs. It is made up of billions of nerve cells. Some of these are directly responsible for transmitting messages throughout the brain and are known as neurons. These cells are all connected to each other in a vast circuit. It has been estimated that there are more neuronal connections in the brain than there are stars in our galaxy. The other type of nerve cells are called glia (or glial cells). These play more of a supportive role for the neurons and do not send messages themselves.

In order for the brain to perform its role in the impressively efficient way it does, it needs to send messages both within its own circuitry and to other parts of the body. For this to happen, messages need to travel from one end of a nerve cell to the other, and then onward to other cells nearby.

Within an individual nerve cell, messages are conveyed from the cell body, along a fine, fingery outgrowth called an axon, to the other end. The axon can be very long – sometimes over a metre. The message at this stage is in the form of an electrical signal, and the axon is insulated by a material called myelin to prevent the messages being discharged elsewhere (much like the insulating plastic around an electrical wire). Once along the axon, the electrical signal is conveyed to a number of structures called axon terminals.

A neuron: electrical messages travel from one end to the other.

From the axon terminals, messages are carried to other nearby nerve cells in the form of chemicals called neurotransmitters. The chemicals are released from the terminals and travel across a gap between the nerve cells known as a synapse. On the other side, they are received by smaller outgrowths on adjacent cells called dendrites, which are directly connected to the body of this receiving nerve cell. If the nerve cell were a tree, the dendrites would be its roots. The messages may be received by multiple nerve cells at once; in this way, they are spread efficiently throughout the neuronal circuitry of the brain.

Brain anatomy

Grey and white matter

If you were to cut a brain into sections, you would see that various parts are coloured differently. These shades correspond to the different parts of the neurons. The body, dendrites and axon terminals have a pinkish grey colour, and are therefore known as grey matter. The axons look pinkish white and are known as white matter. The white matter is in some ways like a subway that connects stations (the bodies). Damage to the brain can occur in both the grey and white matter, and messages can be interrupted in either situation.

The brain consists of grey and white matter, each housing different parts of the nerve cell.

The cortex

The wrinkly outermost part of the brain that we all recognise is known as the cortex. This is composed of grey matter, and is between 2 and 4 millimetres thick. It is like a thin cloak wrapped around the deeper parts of the brain. Structures within this part of the brain are referred to as cortical.

The cortex can be divided into two halves, or hemispheres, left and right. They are joined by a thick bundle of nerve fibres known as the corpus callosum, allowing one side to communicate with the other. Damage to one side of our brain tends to produce movement problems with our limbs on the opposite side. We are increasingly recognising that one hemisphere can also compensate for damage to the other. Each side may have differing functions to a degree, though. For instance, the left hemisphere is probably more relevant for language. It is also the dominant hemisphere for 90 per cent of people, accounting for the fact that most of us have better control of our right hand.

Each hemisphere contains four lobes, or sections. These are the frontal lobe, the temporal lobe, the parietal lobe and the occipital lobe. Each of these has a number of different functions.

Each half of the brain has four lobes.

If the brain were an orchestra, the frontal lobe would be the conductor. It regulates and oversees many of the other processes in the brain, allowing us to use reason and make sound decisions about what we are doing. It is responsible for our executive skills, which help us complete more complex thinking tasks to better plan and organise ourselves. Accurate expression of language is governed by the frontal lobe. The frontal lobe is also important in helping us notice things in our environment and keeping information ‘in mind’ for short periods – such as remembering a phone number that has been given to us so we can use it soon after. This is known as working memory. The frontal lobe also allows us to retrieve our long-term memories, which are stored in other parts of our brain. The foremost part of the frontal lobe is called the prefrontal cortex, and may have especial relevance for our executive abilities and attention. In many ways, the frontal lobe is what makes us human: it enables us to choose not to act on our basic impulses, and to instead engage in socially appropriate behaviour.

The temporal lobe is critical for memory formation, as well as for distributing these memories to other parts of the brain, where they become long-term memories. Knowing where we are (orientation) is also reliant on this lobe. A small structure in the temporal lobe, the hippocampus, is of particular relevance to memory function. It is often damaged early in Alzheimer’s disease, the most common cause of dementia. This lobe is also important for interpreting sounds, including speech, and for making sense of what we see.

The parietal lobe allows us to know where various parts of our body are in space, and to understand where other objects are in relation to us – so-called visuospatial skills. It plays an important role in purposeful movement, a process known as praxis, which allows us to complete many everyday tasks. The parietal lobe is also important for our language function, our ability to perform mathematics and our ability to recognise objects through touch.

The occipital lobe, the smallest of the four, allows us to interpret and understand what our eyes are seeing.

It is important to understand that dementia can affect any of the lobes of the brain, and cause impairment to any of the associated skills. Memory loss – the symptom most people think of in relation to dementia – is only one of a number of problems that may develop.

Beneath the cortex

The deeper parts of the brain are collectively known as the subcortex, and structures within them are often referred to as subcortical. The subcortical structures can be affected by dementia, sometimes before the cortical structures. Examples of subcortical structures include:

The cerebellum, which is critical for balance and movement (especially fine movement). It is particularly prone to the effects of alcohol, which is why one can become unbalanced when under the influence. The cerebellum may also have some role in regulating our emotions.

The brainstem, which connects the brain with the spinal cord. It contains a number of other structures, including the pons, the midbrain, and the medullaoblongata. The brainstem is critical for basic bodily functions such as swallowing, breathing and facial movements. It is like our life-support system. Even small areas of damage (lesions) in the brainstem can cause profound changes, such as breathing disorders, and problems with swallowing and speech.

The location of the brainstem (midbrain, pons and medulla oblongata) and cerebellum.

The basalganglia, a group of small structures (known as nuclei) deep within the brain. They are thought to have numerous roles, including regulation of movement, integration of memory and maintenance of attention. Parkinson’s disease may be caused by damage to the basal ganglia. Psychiatric symptoms such as mood changes, delusions and hallucinations, and anxiety can occur with damage to the basal ganglia.

The limbicsystem, a set of connected zones of tissue (nuclei again) that lie immediately below the inside portion of the temporal lobe. Some of these are subcortical, such as the amygdala. This almond-shaped structure attaches an emotional significance to a memory (such as joy, shame or guilt). These memories seem especially immune to degradation. The amygdala also plays a pivotal role in fear, an emotion that is especially potent when it comes to memory formation. Other limbic structures, such as the hippocampus (mentioned earlier) are actually cortical structures. The thalamus relays motor (movement) and sensory signals to the cerebral cortex. The hypothalamus maintains the balance of numerous vital functions, regulating temperature, sleep and appetite, for example. The limbic system more generally plays a significant role in our emotional state, motivation and long-term memory storage.

Location of parts of the limbic system and the basal ganglia.

When dementia affects these subcortical structures, the symptoms may be quite different to when the cortical areas are damaged. The most obvious initial problems may be with movement, balance, emotions or other bodily functions. As it progresses, dementia often affects both cortical and subcortical regions, leading to a mix of symptoms, becoming more ‘global’ in effect.

The ventricles

The other structures worth noting in discussions around dementia are the ventricles, which are cavities that run throughout the brain. They are filled with cerebrospinal fluid, which bathes and protects the brain and the spinal cord. Enlargement of the ventricles can occur in conditions where the brain shrinks, including Alzheimer’s disease. Sometimes, the ventricular enlargement itself causes problems. This is known as hydrocephalus and is discussed in Chapter 9.

Cognitive skills

Cognition is often defined as ‘a mental process of acquiring knowledge and understanding through thought, experience and the senses’. When discussing dementia, however, it is more helpful to consider cognition as ‘our capacity to competently adapt to the environment around us’. Without adequate cognition, we may be unable to accurately process or use the various stimuli – things we see, hear or otherwise experience – that our environment creates. We may then lose awareness of where we are, why we are there, what we are doing, who and what is around us, and how we should react.

Skills related to cognition are known as cognitive skills. These include attention, memory function, orientation, language function, calculation, visuospatial skills, gnosis, praxis and executive abilities. All of these may be impaired in different forms of dementia.

Let’s look at each of these in a little more detail.

Attention

Attention refers to our ability to notice or highlight things in our environment. We pay attention to numerous stimuli, including what we see and hear. Without attention, we do not consciously register what is happening around us and therefore there is nothing to later remember. Attention is divided into various parts: selective attention (when we focus on one thing among a number of things), divided attention (when we focus on more than one thing at once, such as talking while we walk), and sustained attention (when we remain focused on one thing for a while – closely related to concentration).

Two areas of the brain are thought to be particularly important in regulating attention. One is the prefrontal cortex, which is the foremost part of the frontal lobe. If we are deliberately trying to pay attention to something – such as when reading a book – the prefrontal cortex is responsible. The other is the parietal lobe, which is involved when our attention is suddenly drawn to something unexpected – hearing someone scream, for instance.

Memory function

Memory is our ability to remember information that comes to us in the form of stimuli – messages from our environment, whether in the form of pictures, sounds or other senses. Memory function can be divided into sensory memory, short-term memory and long-term memory. Different parts of the brain may be responsible for each.

Sensory memory is the shortest type of memory and is really just a mental representation of what we sense (see, hear, feel, smell and so on). A very brief mental image of a car that has just passed by is an example of sensory memory.

Short-term memory, often used interchangeably with the term working memory, is the part of our memory in which we hold information for short periods so that we can manipulate it. Examples include following the elements of a conversation so that we can respond appropriately, and mentally reciting the items on a shopping list when we enter a supermarket. This type of memory only stays with us as long as we are consciously thinking about it, and usually lasts no longer than a minute.

For our memory to be recalled at a later date (after it has left our conscious awareness for the first time), it needs to become encoded by the hippocampus. This structure acts like a sorting centre, receiving short-term memories and distributing them to different parts of the cortex where they become long-term memories. We then have acquired these memories for future remembering – a process formally known as acquisition.

There are two types of long-term memory. One is called explicit memory, and relates to things that have happened to us (episodic memory) or knowledge we have learnt over our lives (semantic memory). The frontal lobe is employed to retrieve such memories – that is, to remember them and bring them to our attention again. This process is known formally as retrieval. The other type of long-term memory is termed implicit. These are our ‘autopilot’ memories – ones we don’t consciously remember, such as how to drive a car or ride a bike. Explicit and implicit memories are stored in different areas – the first in the cortex and the second in subcortical structures like the cerebellum and basal ganglia – which is why we may be unable to recall a recent event but still be able to drive a car.

Orientation

Orientation is our ability to know where we are, in both space and time – referred to as spatial and temporal orientation, respectively. If we cannot orient ourselves, we are disoriented. This cognitive skill involves a variety of different areas of the brain, including the frontal, temporal and parietal lobes.

Language function

This skill relates both to our ability to express what we want to in speech, and to understand what is being said to us. It is also important for written comprehension and expression. Although a number of areas of the brain may be necessary for this skill, the frontal and parietal/temporal lobes seem particularly important for producing speech and understanding speech, respectively. When an individual has difficulties with spoken language (despite the fact that the muscles governing speech are intact) they are described as being aphasic or dysphasic.

Calculation

This skill allows us to perform basic math operations such as addition, subtraction, division and multiplication. The inability to calculate – or acalculia – is classically related to parietal lobe dysfunction, though it can also occur after damage to the frontal lobe.

Visuospatial abilities

These skills allow us to understand what we see around us, and our relationship in space to other objects in our environment, such as how far away something may be. They allow us to accurately perceive depth, a vital skill in navigating objects such as stairs and in facilitating other daily tasks – getting in and out of a bath, for example, or sitting down on a chair. Feeding ourselves can be a challenge without adequate visuospatial skills, while even mild impairment of visuospatial abilities means driving may become unsafe.

Visuospatial skills also allow us to know our environment; without them we may not recognise even familiar routes and locations.

The circuitry that allows us to use our visuospatial skills is widely distributed through the brain, including in the occipital, parietal and temporal lobes.

Gnosis

This skill allows us to recognise people and objects that should be familiar. There are a number of subtypes depending on the sense involved. Problems recognising what we see is termed visual agnosia. Faulty recognition of sound, including speech, is termed auditory agnosia. Being unable to recognise by touch is called tactile agnosia.

Praxis

This skill allows us to voluntarily move various parts of our body. It is critical for us to perform everyday functions such as getting dressed, manipulating objects (to brush our teeth, for example) and walking in a coordinated fashion. The circuitry involves the frontal and parietal lobes, as well as subcortical structures such as the basal ganglia. When someone has difficulties with these tasks, we refer to this as apraxia.

Executive skills

In many ways, it is our executive abilities that differentiate humans from most other species. They allow us to plan ahead, organise ourselves, sustain our motivation and stay focused, and they stop us from acting on unhelpful impulses. They underpin our ability to work together, be socially appropriate and self-regulate. The ability to switch from one way of thinking to another – mental flexibility – is related to executive function. Working memory is also considered an executive skill.

All these abilities rely heavily on the frontal lobe, although damage to subcortical structures can also cause impairment.

2

Normal Ageing and Cognition

Normal ageing results in some cognitive changes, but not everyone will get dementia.

Age-related cognitive changes should not cause significant impairment of daily functioning.

The brain shrinks as we get older and often accumulates damage from impaired blood supply. These processes do not always result in dementia, though are often present on brain scans.

Cognitive changes associated with ageing include slowing of thinking, mild word-finding difficulties, problems with acquiring new memories, mild problems holding information ‘in mind’ for short periods, and executive changes.

Language function, practical skills that are well learnt, visuospatial skills, and general knowledge are not impaired greatly by normal ageing.

It is an unfortunate fact, and one I recognise in myself, that age is not necessarily kind to the brain. We often feel less ‘sharp’ and words don’t come as easily. We compensate for