People who have dementia, their family members and friends, care assistants, professionals in training, those with long experience in the field, people who interact with the public in order to provide a product or service and those who want to contribute to dementia-friendly communities – all have a part to play in dementia care. The aim of this book is to empower people supporting others who are living with dementia, so that professional and family carer roles are more enjoyable and rewarding and so that the lives of those living with dementia are more secure, more fun and more meaningful. The book sets about achieving this aim by placing the experience of the person with dementia in the centre, highlighting the impact of individuals, society and the physical environment on the person's life.

Dementia is a ‘hot topic', with headlines in the media about the ‘rising tide' of older people and the cost of the dementia-related consequences of these demographic changes. Reports about poor quality of care in residential and nursing homes or abuse of vulnerable older people also makes headlines that can be a source of worry for those who are concerned about their family members and/or thinking about how they would like to be looked after in old age. These headlines ignore the good quality care that is the norm for most people.

We feel that excellence in dementia care is ‘everybody's business' because the disease can affect people from every sector of society. Our approach is based on the belief that everyone can benefit from an inclusive approach. We recognise that people with dementia and their supporters live in a wider context of social networks and physical environments, so the book aims to offer guidance on achievable initiatives and adjustments that make a difference to continued inclusion of people with dementia in their communities.

This book is designed to be an introductory text so it includes key facts and information essential for insight into the nature of the difficulties associated with dementia and of approaches that make a positive difference to well-being. Recognising that people with dementia have a lot to offer others, we highlight the importance of mutual support and adopt a challenging approach to stigma and exclusion; we try to offer alternatives and solutions to societal as well as individual problems.

Specialist skills may be both ‘invisible' and internalised. Workers and family carers may be experts in their roles yet receive little recognition because their abilities look ‘natural' to an observer. Empathy – the ability to put yourself in another person's shoes – and kindness are the basis of excellent care and can minimise stress for people with dementia. We hope to make knowledge and skills explicit and hope to clarify what needs to be done to create positive outcomes for people who have dementia. In sharing our experience of caring for people with dementia in different hospital, community and home environments, we aim to acknowledge challenges while offering guidance in an engaging, informative, encouraging and accessible way. Improved knowledge, better understanding and specific advice based on years of experience can be applied by anyone involved in procedures or social care interventions and promote positive outcomes.

We have tried to approach dementia care holistically, so that all aspects of life are considered and all groups in society included. We believe that the well-being of those involved in care – either as family or paid carers – is as important as that of the person with dementia. We take a person-centred approach that respects the needs of all involved. This book is an introduction for developing professionals of all backgrounds, but it is equally relevant for family carers and people with a diagnosis of dementia themselves. With earlier diagnoses people with dementia need access to clear honest explanations of issues that can affect them at different stages of the ‘dementia journey' and of the effective services and interventions available.

The book is organised into parts to make it easier for the reader to navigate and to follow their interests. We begin by outlining the context and how the various types of dementia are caused and how they progress. Following this we order the chapters to reflect the progression of dementia, from reducing risk and health promotion, through relationship and diversity issues, potential problems and a wide range of potential responses, to ethical and legal issues and considering future developments. Throughout the book we encourage an empathic sensitive and person-centred approach.

The structure is designed to make the book accessible to a wide range of readers who may be using it in a variety of different locations, including hospital wards, voluntary sector organisations, colleges and universities and in the community in respite or day care centres and in people's own homes. It will also be useful for those wishing to revise the subject and reinforce learning for specific events such as job interviews and examinations.

The book offers an in-depth introduction that will develop and embed learning. Further reading is signposted at the end of the book. An online resource is available which challenges the reader with ideas for reflective writing and a quiz to promote and reinforce learning.

We thank our readers for their interest and commitment to the care of people with dementia. We hope that this book will be helpful in supporting you in your work promoting the well-being of those in your care. We thank the people with dementia who have contributed to our own learning and aim now to pass this on to our readers.

With thanks to: Mrs. McNeil, her daughter Margaret and all families living with dementia. Your commitment, patience, humour and resourcefulness through the difficulties of living with dementia have inspired us to write this book.

The Royal Star and Garter Home, Solihull, for allowing photography of their person-centred and stimulating care environment.

Our families, for your encouragement and support.

Context

‘Dementia' is an umbrella term, referring to a range of conditions associated with old age in which memory, language skills, cognitive functioning and the ability to carry out everyday activities of daily living are progressively weakened due to processes within the brain that lead to gradual neuronal death. Dementia is not a natural part of ageing, and most older people do not develop dementia. However, for those who are affected, it has an impact on their ability to be independent, to engage with others as equals, to look after everyday basic needs and to maintain usual roles in society. Some of these consequences are related to the stigma still associated with dementia rather than the actual condition itself. Relationships are central to the well-being of people with dementia, yet sometimes friends and relatives do not feel able to interact with and support loved ones, which can lead to feelings of isolation (Figure 1.1).

Demographic factors mean that ever larger numbers of people are expected to be living with dementia in the near future. Therefore, there is a pressing need to let people know what they can do to minimise stigma, to understand the disease processes and their impact, to communicate effectively and to play a part in changing relationships, society and the physical environment so that we welcome and include those living with dementia. At the same time, current and future generations can learn how to minimise the risk of developing dementia by making simple lifestyle adjustments.

Who the book is for

In this context, people with dementia, their family members, health and social care professionals, student nurses and other professionals in training, voluntary workers and concerned members of communities need information about dementia, insight into people's experiences and guidance on appropriate support and interventions. This book is for anyone in these situations who wants to make a positive difference to the experiences of people living with dementia.

Overview of dementia

There are many types of dementia; the most frequently occurring are Alzheimer's disease (60–70% of cases) and vascular dementia. Other forms include Lewy body disease, mixed dementia (Alzheimer's combined with vascular-type pathology), frontotemporal dementia, posterior cortical atrophy, alcohol-related dementia and Creutzfeldt–Jakob disease. While these conditions differ in their causation, specific patterns of development and initial symptomatology, they have much in common. All affect short-term memory, emotions, cognition, language and the ability to sequence activities and so cope with everyday life. We outline the most common types of dementia in the early chapters and subsequently use the term ‘dementia' to cover all forms.

Defining our terms

‘Dementia' is used to refer to the conditions outlined previously. The people who have a form of dementia are called ‘people with dementia' or ‘people living with dementia' throughout the book. This is because dementia does not, and should not, eliminate the person – we feel it is useful to separate the condition so that it is reinforced that despite its effects, these do not overwhelm the history, personality, lifetime experiences and relationships of a person.

‘Stages' of dementia

All forms of dementia are progressive, which means they gradually get worse. We refer to dementia developing in stages, although in reality the stages described do not happen in a neat pattern, as each individual's experience is unique. ‘Early stages' means those who may have recently had concerns about memory confirmed and those who may have come to terms with their diagnosis and are continuing to live independently, despite some problems with short-term memory and word-finding difficulties. People in this situation can usually continue to drive and continue with their social roles, although professional life may be difficult. They may wish to let other people know of their diagnosis, so as to explain any problems that might arise (such as forgetting names, getting lost in unfamiliar environments), and may need a little support but are generally able to articulate their wishes and carry them out. As time goes on, people living with dementia may experience further difficulties, for example, risks related to forgetting to turn gas or taps off, difficulties expressing themselves, problem-solving or following TV programmes. They may need prompting with some activities of daily living and at times may need assistance. Later on, people may struggle to live independently and find it difficult to understand other people and to express their own thoughts and feelings. In later stages, they will need more assistance with simple tasks. Life can become frustrating, particularly when others do not understand and make adjustments. Family carers can find caring very stressful. All forms of dementia are terminal conditions and grow similar in later stages. Eventually the person will need palliative care (care aiming to keep a person comfortable and pain free at end of life).

Causes for optimism

Despite the negative prognosis, there is much that can be done to improve well-being for those living with dementia and to anticipate in treatment breakthroughs in the future. Funding for research is at its highest levels ever and more money is committed. Anti-dementia drugs have some positive effects and new drugs are being trialled. Many countries have national strategies outlining the importance of high-quality care, support and social inclusion throughout the condition. Campaigns to eradicate stigma are already making a difference to peoples' lives and architects are becoming more aware of how dementia-friendly environments can promote independence.

The strengths of people with dementia

People with dementia themselves are increasingly confident about talking about their condition and campaigning for change by blogging, addressing conferences and contributing to government policy development.

Our beliefs and approach

We take the view that people living with dementia are valuable citizens and that it is everybody's business to ensure they are supported so as to have the best quality of life. This means addressing social inclusion, optimum physical health and a range of interventions, treatments and therapies. The experiences of people with dementia result mainly from the quality of relationships, so most of all we hope to promote positive, person-centred interpersonal connections.

Gaining insight into people's experiences

In the early stages of dementia, people are able to describe their experiences, thoughts and feelings. As the dementia progresses, this becomes more difficult because of language and memory problems.

The experience of having dementia is unique and very personal. Even though there is a general pattern in how the syndromes progress, each person's journey will be different because of other factors such as their personality, the type of dementia, the nature of their close relationships and support network, educational level, economic situation and location. In addition, dementia is still often stigmatised and awareness of having a ‘damaged identity' plays a part in an individual's sense of self.

Professionals and family members wishing to gain insight into the world and experience of a person with dementia, therefore, need to listen closely and sensitively to how the person communicates about what it is like to live with the condition. They can also attempt to gain insight through other means and empathise by imagining how they might feel if they had the difficulties associated with dementia.

Listening to people with dementia

The most effective way to find out about someone's experience is to ask them. A question such as ‘what's it like living with your condition?', should enable a person in early or middle stages of dementia to open up about how they feel and what their life involves. It is important to listen patiently and be aware that the person may use metaphors to describe the situation and these may not obviously or immediately answer the question. Observational skills will enable a sensitive person to read the mood of the person with dementia who in later stages may not be able to express thoughts coherently. ‘Reading between the lines' can allow some understanding. For example, the person with dementia may be feeling uneasy, frightened or disorientated, so he/she might talk about being in a strange place or ask for clues about where they are or who is talking to them.

People living with dementia are experts about their own experiences and increasingly they are taking the initiative in sharing their insights. The most famous of these was Terry Pratchett, who spoke on radio and TV, while Christine Bryden wrote Dancing with Dementia (2005). Some people with dementia (e.g. Norm McNamara) have also taken to blogging and have created websites (e.g. Jennifer Bute).

Learning through creative media

Literature, films and works of art can also contribute to an understanding of people's experiences. Still Alice (Genova, 2009) and The Story of Forgetting (Block, 2009) explore the issues as do the films ‘Iris', about the life of author Iris Murdoch, and ‘The Iron Lady', about former Prime Minister Margaret Thatcher. William Utermohlen's art illustrates his changing awareness of self during the course of his illness (Figure 2.1).

Stigma

In many people's minds, dementia is associated with decline and death, leading to fear and denial that these experiences could lay ahead. People do not feel comfortable about these thoughts and feelings, so they attempt to put them, and those that remind them that old age comes to us all, to one side, out of sight and mind.

There is a long-standing history of excluding people with dementia from wider society, reinforced by labelling their disabilities as signs of being ‘less alive' or less of a person. Naturally this leads to a fear in the mind of a forgetful person who, as a member of the same society, has internalised these values. Any sign of a poor memory can be perceived as the beginning of loss of social self as well as personal identity.

Knowing this, people with dementia are faced with the difficult decision about whether to be open about their condition and thus contribute to dismantling prejudice, or try to maintain their sense of self and self-esteem despite insensitivity and discrimination within society. Kitwood (1997) called undermining responses to people with dementia ‘malignant social psychology' (Chapter 15). The term reflects the extent of the damage that can be done when stigma and beliefs drive behaviour that limits and damages people's opportunities and relationships.

Recent initiatives such as the ‘Dementia Challenge' (Alzheimer's Society, 2012) and ‘Dementia Friends' in the United Kingdom aim to reverse this thinking and maintain people with dementia as citizens within their societies while enabling adjustments to be made to ensure they maintain their roles, with support if necessary, in their families and communities.

Memory and identity

Our memories allow us to reinforce our identities through individual stories that remind us what we have done and the values and relationships that sustain an identity. Losing recent memories and having difficulty in thinking coherently threatens this process. People with dementia sometimes express a feeling of struggling in a fog to understand and communicate. Long-term intact memories gradually become more real than recent or current events. Difficulty with managing tasks and a lack of understanding from others can give rise to anger and frustration. Embarrassment and feelings of inadequacy arise when someone is reminded of their deficits. They may also fear how their worsening condition could make them a burden on family members. Feelings of sadness are common while a mood may persist when the trigger that caused it has been forgotten. Emotional responses remain strong and the experience of a person in later stages is dependent on the nature of close relationships and the willingness of family members and professional carers to promote identity and well-being through meaningful activities, emotional warmth and social inclusion.

Introduction to the brain

The human nervous system (Figure 3.1) is both crucial for life and responsible for sensation, movement, thought and speech. The adult brain, which weighs 1.3–1.4 kg, has been likened to an information-processing unit like a computer because it receives sensory information, integrates it and coordinates a behavioural response. In reality, the brain is much more complex than a machine because of its ability to generate information and responses in the absence of external input. Dementia is an umbrella term for about 100 diseases in which brain cells die on a large scale. It can help to know about key structures and regions of the brain because the progressive degeneration affects many cognitive functions – memory, attention, problem-solving, mental agility, language, perception, emotion and planning.

The nervous system

Estimates of the number of cells in the nervous system vary but it is thought to comprise 100 billion neurons (nerve cells) and support tissue (known as neuroglia or glia). Neurons are called physiologically excitable cells because they are able to conduct electrical impulses (action potentials) that enable rapid communication. Sensory neurons detect changes in their environment, interneurons signal changes to other neurons and motor neurons orchestrate movement, actions and behaviour (Figure 3.2).

• Grey matter is dark in colour and made up of neuronal and glial cell bodies and capillaries. This metabolically active tissue uses about 95% of all oxygen delivered to the brain.
• White matter is predominantly composed of myelinated nerve fibres that enable rapid conduction of signals between different parts of the nervous system.
• Synapses are highly specialised, microscopic connections between neurons that enable the transmission of impulses from one cell to the next by means of neurotransmitter chemicals (Figure 3.4).

Other tissues of the nervous system

Protected by the bones of the cranium and the membrane layers known as meninges, the brain comprises about 2% of body mass. An extremely rich network of blood vessels nourishes the brain (Chapter 6) and a process known as autoregulation tightly regulates blood supply to match the organ's metabolic (energy) demands.

The final component is cerebrospinal fluid (CSF), which provides buoyancy, protection and chemical stability (homeostasis) within the environment of the nervous system. CSF is formed by ependymal cells (the choroid plexus) and circulates through the ventricles and spinal cord before being reabsorbed by the arachnoid granulations.

The cerebrum

The largest and most distinctive part of the human brain is responsible for executive functions like conscious experience, thinking, solving problems, learning, decision-making and initiation of movement including speech. The ability to form memories depends on both structural and psychological changes that take place as the cerebrum organises information. Dementia is a progressive disorder, so some functions are retained for longer than others.

Cerebral hemispheres

The two cerebral hemispheres are joined by means of a large bundle of nerve fibres known as the corpus callosum that allows information to be passed between them. Each hemisphere controls movement on the opposite side of the body and is made up of four wrinkled lobes with deep folds called gyri and creases called fissures. The right hemisphere is specialised for recognition of faces and spatial awareness; the left side is specialised for functions such as language, writing and calculation. The internal capsule forms a connection between the white matter of the cortical regions by way of the thalamus, which serves to relay information to:

• Frontal lobes, (Figure 3.3a) which are responsible for higher order processing including personality, judgement, intention and executive functions;
• Parietal lobes, which play an important role in bringing together activity from sensory and motor systems, thus enabling sensory perception, spatial awareness and functions such as calculations;
• Temporal lobes which include areas that are key for processing sounds and language;
• Occipital lobes, which receive information from the eyes and process it to create meaningful, conscious visual images

Basal ganglia

The basal ganglia play an important role in planning of movement (Figure 3.3b). They are composed of clusters of neurons (nuclei) located deep in the cerebrum and include the caudate nucleus, putamen, globus pallidus and substantia nigra.

Limbic structures

In evolutionary terms, this system represents the most primitive part of the cerebral cortex. The limbic cortex (Figure 3.3b) acts as a link between higher cognitive functions like thinking and reason and more instinctive emotional responses such as fear, appetite and anger. The amygdala and cingulate gyrus are structures that play an important part in emotional responsiveness while the hippocampus is crucial to the formation of memories and learning. The limbic system is functionally connected to the hypothalamus, which controls basic life processes including circadian rhythms, temperature regulation, appetite, sex drive, thirst and hormone systems.

The brainstem

All information that passes between the spinal cord and cerebrum must pass through the brainstem, which comprises the midbrain, pons and medulla. It includes groups of neurons (nuclei) that regulate autonomic activity (Figure 3.2), thus controlling heart rate, blood pressure and breathing. In addition, the reticular activating system (RAS) forms a network that plays a key role in modulating levels of consciousness and other responses such as pain.

The cerebellum

The fundamental role of the cerebellum – a very tightly folded layer of grey matter in the hindbrain – is in the fine-tuning of precise, coordinated movement and balance. It is also essential for some kinds of sensorimotor learning, as exemplified by hand–eye coordination, and the ability to analyse visual signals and adjust behaviour accordingly.

The normal ageing brain

Growing older is associated with many physical, biochemical and physiological and psychological changes in the brain. Plasticity is the term used to describe the brain's ability to alter structure and networks to function well and perform everyday tasks that we often take for granted. The term cognitive (mental) reserve is sometimes used to describe the brain's ability to recruit neural networks in an effective way that enables us to remember, learn new things and live our everyday lives (Figure 4.1). Cognitive reserve seems to build up during a lifetime through intellectual enrichment. However, the extent to which mental stimulation (e.g. puzzles, games, reading) may protect people from aspects of cognitive impairment associated with dementia is still a matter of debate as decline begins at a relatively early age (from the 20s onwards) even in healthy adults.

Advances in neurosciences and imaging technology mean better knowledge of normal age-related brain changes than ever before. At the level of cells, normal cognitive processes and memory ultimately depend on the ability of neurons in the brain to fire by creating action potentials and to communicate by means of synapses (Chapter 3). With advancing age the density of grey matter and the number of dendritic spines on neurons decreases (see Figure 4.2). The changing brain function in normal ageing can be measured in terms of accuracy and speed of information processing, attention, motivation, episodic memory and working memory.

Progression of dementia

The decline in brain function associated with dementia is not the same as normal ageing processes. Dementia is a syndrome caused by disease of the brain. Two key networks, the hippocampus and the neocortical circuits, appear to be particularly vulnerable to the kinds of synaptic alteration that is characteristic of dementia; many biochemical pathways that affect gene expression may be involved. The risk of dementia increases as people get older (Figure 4.3) and it is incurable; the disease cuts lives short, although those affected often die of infections such as pneumonia.

Each person will experience dementia in his or her own way; it is progressive although the rate of decline partly depends on the type of dementia that is affecting the person. Most cases are likely to arise from multiple contributing factors, including the following:

• Degenerative disease of the brain, for example, Alzheimer's disease (Figure 4.4) (Chapter 5), Parkinson's disease or Huntington's disease or vascular dementia (Chapter 6)
• Head injury, for example, stroke related to vascular problems or arrhythmias of heart, single brain trauma or repeated sporting head injury
• Genetic inheritance: for a few families, it may be possible to identify a change to a gene (a mutation) that is responsible in that family
• Infections, for example, Creutzfeldt–Jakob disease and HIV/AIDS
• Exposure to environmental chemicals and contaminants throughout the lifespan and including alcohol or drugs
• Hydrocephalus
• Brain tumours

Those who are affected eventually need help with all aspects of daily living and become increasingly dependent on other people. There are some broad similarities that include loss of executive functions (Figure 4.1) and these deficits occur because the brain is becoming progressively damaged by the disease process or small strokes. Age-related sight or hearing loss (Chapter 23) can make things more difficult for people with dementia who may be working hard to make sense of the world around them. There is currently no cure for most types of dementia, but treatments (Chapters 31 and 32), advice and support are available (Chapters 12 and 13).

Signs and symptoms

We may all forget recent conversations or events, but forgetful people can usually still remember other facts related to things they have forgotten. Nevertheless, decline in short-term memory is the most apparent early symptom of dementia, but some or all of the following may become increasingly apparent:

• Changes in mood or behaviour, for example, mood swings or showing more or less emotion than is usual for the person, or becoming more likely to blame others for mistakes.
• People with dementia may find it hard to perform familiar tasks to the same standard. As dementia progresses he or she might start to go wrong when getting dressed, cleaning their teeth or preparing a meal and may get slower at grasping new ideas.
• It is not always easy to spot changes in personality, but a person with dementia may become more suspicious, agitated, depressed or irritable than before. He/she may make comments that are hurtful, tell jokes that are offensive or curse and use foul language or display behaviours that are completely out of character.
• Becoming lost in previously familiar places, confusing night and day or forgetting where they are and how they got there are signs of disorientation to time and place in the person with dementia.
• People with dementia may be affected by loss of initiative so enthusiasm for work, hobbies and everyday activities may ­disappear and they might spend hours sleeping or sitting.
• Anyone can temporarily forget where they have put things like keys, handbags or wallets, but people with dementia may have ­difficulty keeping track of things including conversations and bills.
• Problems with language may mean that a person with dementia substitutes repeats or forgets simple words, all of which may mean it is difficult for family and carers to understand them.

Early diagnosis

Anyone who is experiencing memory problems or is having difficulty when performing everyday tasks should visit their doctor who may be able to exclude other reasons for the diffi­culties, for example, vitamin deficiencies or thyroid dysfunction.

It is important that people with dementia have an early diagnosis (Chapter 11) and feel supported even if they have been expecting it. People cope better when they understand that changes are the result of the disease process (Chapter 19) rather than a negative aspect of personality. Dementia will increasingly affect judgement and behaviour in ways that are severe enough to affect work, lifelong hobbies and social life, so it is important for those who have been given a diagnosis to find help and support (Chapter 12), put their financial and other affairs in order (Chapter 61) and participate in decisions about their care (Chapter 49) while they still have the capacity to do so.