Dementia Care in Nursing

Books

Sue Barker & Michele Board

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    Foreword

    Terry Pratchett, the well-known author who has publically discussed his own early onset Alzheimer's disease, has said:

    The first step is to talk about dementia because it's a fact, well established in folklore, that if we are to kill the demon then first we have to say its name … Names have power like the word Alzheimer's; it terrorizes us. It has the power over us. When we are prepared to discuss it aloud we might have power over it. There should be no shame in having it yet people feel ashamed and people don't talk about it. (Alzheimer's Society, 2008a, p8)

    This extremely well-written book will enable nurses not only to talk about it but also to act and care for those with dementia from a sound, knowledgeable basis that takes into account the many factors – physical, psychological and sociological – that impact on this distressing condition. Statistics about dementia feature more and more in the news. It is predicted that dementia in older people worldwide will experience an exponential rise in future years, yet more money is spent on cancer. Currently, there are 35.6 million people worldwide who experience dementia, a figure estimated to rise to 65.7 million by 2030 and 115.4 million by 2050. As nurses, we are in a key position to take on this challenge as we have close relationships with those in need of care.

    Dignity and nutrition continue to be of concern in current NHS hospitals, as demonstrated in the Care Quality Commission report (2011), which identified that 50 per cent of hospitals were not providing adequate nutrition and dignity for older people. The authors, Sue Barker and Michele Board, have written a text that delves into all the aspects of nursing care that a 21st-century nurse needs to know to provide the highest standards of care for patients with dementia. They cover fundamentals, in nursing models of care, that includes compassion and caring, as well as person-centred care, and introduce a new model: humanising care (Todres et al., 2009).

    The book deals with attitudes, culture and spirituality; personality and lifelong development; and assessment from a nursing perspective. Practical advice on how to manage dementia in an acute setting, including physical and psychological health, is clearly provided. All aspects of the phases of caring are covered and a very relevant final chapter on ethics and legal aspects considers issues of consent and management of complex legal scenarios and the protection of the vulnerable. The level of detail and evidence-base information in this text ensures this is one of the most readable and informative texts available on this challenging and increasingly significant condition.

    Dr Shirley Bach Series Editor

    Acknowledgements

    We would like to thank our colleagues and the staff at Learning Matters who have supported us in our writing. We would, though, especially like to express our appreciation for all those we have worked alongside in our caring roles. While we have endeavoured to use ourselves to show care and support others, we have felt honoured to be part of their lives. Thank you to the people who have shared their lives with us and inspired our case studies. We have met some exceptional people and feel humbled.

    The authors and publisher would like to thank:

    The Alzheimer's Society for the data, taken from their website (www.alz.co.uk), used in Table 1.2; royalties from the sale of this book will be donated to the Alzheimer's Society;

    The Open University Press for material used in Tables 3.1 and 3.2, from Kitwood, T. (1997) Dementia reconsidered, the person comes first. © Reproduced with the kind permission of Open University Press. All rights reserved.

    Every effort has been made to trace all copyright holders within the book, but if any have been inadvertently overlooked, the publisher will be pleased to make the necessary arrangements at the first opportunity.

    About the Authors

    Sue Barker has been a mental health nurse since 1985 and has had a broad range of clinical experience. She started lecturing in 1998 but continued to spend half her time in clinical practice. In 2004 she became a full-time Senior Lecturer but still holds an honorary contract with a local health care trust. She has recently been involved in developing dementia care workshops for health and social care practitioners and a new unit focused on dementia care for undergraduate mental health nursing students.

    Michele Board has been an adult nurse since 1985 and has had a broad range of clinical experience with a specific focus on nursing the older person. She started lecturing in 2003 and leads units on the Essentials of Nursing Care for the undergraduate nursing programme, and specialist themed days on the nursing care of the older person. She has led the development of dementia education programmes for health and social care staff working in the NHS and the private sector. She holds an honorary contract with a local health care trust working as the senior nurse for their memory clinic.

  • Glossary

    abuse

    to misuse; to treat someone badly

    accommodation

    a concept within Piaget's cognitive developmental theory meaning the development of a new schema when new information makes an old schema obsolete.

    acute confusional state

    acute: of short duration; a sudden or of short duration state of being confused or disorientated about time, place or person.

    ageism

    a type of discrimination based on the person's age – usually related to older age but can be used for younger ages too.

    agency

    a person's ability to act for themselves; to undertake an action based on their free will.

    agnosia

    the absence (a) of the ability to recognise or identify objects.

    antidepressants

    a group of medications primarily used to treat depression. There are different pharmacological categories, including tricyclics, specific serotonin reuptake inhibitors and monoamine oxidase inhibitors.

    approved mental health practitioner (AMHP)

    a mental health practitioner such as a social worker, mental health nurse or occupational therapist who has undertaken a further qualification to become ‘approved’ to conduct mental health assessments in order to complete an application for a person to be detained under the Mental Health Act.

    apraxia

    the absence (a) of the ability to control bodily actions (movements).

    assimilation

    a concept within Piaget's cognitive developmental theory, meaning the incorporation of new information into an existing schema; the information is assimilated.

    atrial fibrillation

    a cardiac dysrhythmia, i.e. the heart is not maintaining its usual rhythm. This particular dysrhythmia is where the atria (the upper chambers of the heart) are not beating properly – they are fibrillating (flickering).

    attitudes

    the emotional, cognitive and behavioural response to underlying beliefs and values of the person.

    auditory

    pertaining to the perception of hearing.

    autonomy

    making one's own choices or decisions.

    beneficence

    doing good.

    best interest

    to do something or make a decision on someone else's behalf in order to facilitate what they would have done, if able, to promote their own health or well-being.

    celebration

    one of the positive person work interventions identified by Kitwood, where nurses provide the opportunity for the person to recognise and express a joy about something with other people.

    centring

    the disregarding of personal attitudes and values to focus on the person and their concerns; to put the person at the centre. This can be done by controlling one's breathing and paying attention to the person.

    cerebral cortex

    the main, biggest, part of the brain and has two parts.

    cerebral hypoxia

    cerebral: brain; hypoxia: a lack of oxygen. The brain is receiving too little oxygen.

    cognitively challenged

    usually refers to a person who is struggling to process their thoughts.

    commodification

    the treatment of something or someone as a commodity that can be bought and sold.

    concept

    an idea or collection of ideas that work together as a whole idea/thought/entity.

    confabulated/confabulation

    to make up a story/explanation; this term is usually associated with mental disorder, particularly Korsakov's syndrome.

    constructs

    the elements or parts of a theory.

    continuum

    a continuing string of items/ideas/thoughts where those next to each other are difficult to distinguish apart but each end of the string are opposing – the opposite of each other.

    correlation

    the finding that different things occur in the same situation. A statistical approach might seek correlations between certain behaviours, thoughts or attitudes, but if a correlation is found, it does not mean that the one caused the other to happen – only that they occurred together.

    cortical encephalopathy

    cortical: relates to the brain; encephalopathy: an abnormal structure or function of brain tissue. This condition is usually found in degenerative diseases. A disease of the outer part of the brain.

    crystallised intelligence

    experientially dependent; it relates to the person's experiences and includes abilities such as knowledge for general information and verbal comprehension.

    cyanosis

    literally, the blue disease; this relates to a blueish colour to the skin due to lack of oxygen in the blood usually seen first in lips and nail beds.

    deductive reasoning

    reasoning or decision-making using rational and logical thought processes; working through a problem one step at a time.

    deputy

    in the context of the Mental Capacity Act someone appointed by the court of protection to make decisions for the person lacking capacity, ensuring the decisions are the least restrictive and in the person's best interests.

    differential diagnosis

    a different diagnosis; whether an alternative assessment of the person's problems can be made.

    discrimination

    where decisions on how to respond to a person are made on the basis of a stereotype and the action has negative consequences for the person.

    donees of a lasting power of attorney

    under the Mental Capacity Act the persons who are legally appointed by the donor to make decisions for them when or if they lose capacity.

    dynamic

    being in a state of always changing, moving or developing.

    dysphasia/aphasia

    difficulty (dys) or absence (a) of speech.

    ego

    I; the person's sense of themselves. In psychodynamic theory it is the part of the self that balances the needs and desires of the id against the social and moral codes of the superego.

    electrocardiogram

    a machine that measures the electrical activity of the heart.

    embodiment

    a recognition that the social, psychological and spiritual person exists within a physical body, therefore all elements of the person need consideration in care situations.

    episodic memory

    the ability to recall specific situations; to remember separate episodes.

    ethical

    decisions about what professional behaviour or attitudes are right or wrong.

    ethology

    the study of animal behaviour and how it occurs in the natural environment.

    explicitly

    clearly and fully defined, leaving nothing to be assumed or implied.

    familial

    pertaining to the family, for example genetic disorders.

    fibrils

    small fibres. Amyloidal fibrils: small fibres made up of insoluble proteins that impact on the functioning of brain cells in dementia.

    fluid intelligence

    physiologically dependent; it relates to the body's ability and involves activities such as perceptual speed and visual organisation.

    functional

    able to fulfil its role; the body is working as it should.

    hallucination

    the perception of something that is not present; can occur in all of the senses but is most commonly visual (sight) or auditory (hearing).

    hegemony

    the predominance of one social class or ideology over others.

    hippocampus

    a part of the limbic system in the brain lying at the bottom of the lateral ventricles and involved in memory and emotions.

    hyperactive

    over active.

    hypertension

    high blood pressure.

    hypoactive

    under active.

    iatrogenic

    illness or disease due to medical intervention.

    id

    according to psychodynamic theory, the innate part of the personality that demands to have its needs/desires addressed immediately.

    ideology

    a set of beliefs or a worldview; a system of abstract views that address the social and aspirational needs of a group.

    impaired higher cortical functioning

    the reduced ability of the brain, particularly the frontal lobes, to undertake activities such as reasoning and problem solving.

    implicitly

    implied, not stated clearly and unambiguously.

    insiderness

    a term used within the model of care developed by Todres et al. (2009), which indicates that carers should recognise/understand what the person is experiencing in their perceptual world.

    insidious

    of slow onset.

    interdisciplinary

    something that is done by two or more disciplines working together.

    intuitive

    where a decision is based on instinct rather than rational, logical, conscious reasoning.

    justice

    being fair.

    least restrictive

    where the fewest restrictions or limitations are placed on the person to facilitate the greatest amount of autonomy within the boundaries of the disease and resources.

    Lewy bodies

    concentric spheres made up of proteins.

    lifeworld

    the total experience of the person – their inner thoughts and feelings along with their social and interactional experiences.

    linear process

    a movement; a process that goes in one direction, one step after another.

    linking behaviour

    one behaviour that is associated or linked with another.

    malignant social psychology (MSP)

    a concept highlighted by Kitwood when exploring the care of people with dementia. He found that carers behaved in ways that reduced the person's self-concept and self-esteem without intending to, through using accepted cultural responses.

    manifests

    occurs, happens, appears.

    mean

    a number of meanings but in this context a type of average; a mathematical concept. There are three types of average: mode, median and mean. To establish a mean you need to add all the numbers up (e.g. 12 + 22 + 32 + 42 = 108) and then divide by the number of numbers (4); this gives the mean average (27 in this example).

    mental defence mechanisms

    a concept identified by Freud. They are coping strategies used by people when in psychological difficulty; in the short term they can be helpful, but in the long term they reduce the person's ability to get on with their life in a healthy manner.

    mirroring

    the copying of the behaviour of one person by another.

    mixed economy

    an economy that utilises both public and private funds.

    model

    a proposed structure or way of organising actions.

    moral

    personal decisions about what behaviour or attitudes are right.

    mortality

    refers to death, the incidence or number of deaths.

    multi-dimensional

    more than one dimension; more than one way of viewing something.

    multi-infarct

    more than one infarct; more than one obstruction to the blood supply leading to the death of cells.

    multiple higher cortical functions

    many functions of the higher cortex: memory, thinking, orientation, comprehension, calculation, learning capacity, language and judgement.

    myelinisation

    the process of nerve cells being covered with myelin (made from cholesterol), which protects and speeds the nerve impulse.

    myelopathy

    damage to spinal cord.

    negligence

    not providing proper care, which could lead to harm to the person.

    negotiate

    to reach an agreement through discussion.

    neural fibrillary tangles

    small fibres that develop from within the neurone. They interfere with the normal functioning of the neurone.

    neurochemical

    relating to chemicals that are found in or affect the nervous system.

    neuronal plasticity

    the ability of nerves to adapt, develop and change.

    neuropathological

    diseases of neurones or the nervous system.

    neuropathy

    damage to nerves.

    non-declarative memory

    memory for how to do things that are difficult to declare or explain but easier to show, such as tying shoe laces or riding a bicycle.

    non-maleficence

    doing no harm.

    opiates

    drugs developed from opium, such as morphine; they have strong pain-killing functions.

    organic

    in the context of people, refers to an organ of the body; organic disease is a disease of a part of the body.

    orthodoxy

    behaving in the right way according to set rules usually related to a religious belief system.

    ownness

    from the philosophy of phenomenology, which influenced the development of the humanising care model by Todres et al. It means to be and belong to one's self.

    paternalism

    an ideology that promotes the acceptance of a ‘father figure’ or ‘powerful other’ such as the government who knows best and makes decisions on behalf of others without their explicit consent.

    pathophysiology

    changes in the body's structure or functioning due to disease.

    perceptual world

    the person's experience of the world through their senses; the person's interpretation of their senses.

    personal journey

    one of the elements of Todres et al.'s model of care referring to the individual nature of how a person progresses through life along with their understanding, desires and goals.

    plaques

    a number of different types of plaques can be found in the body. Most importantly for dementia are senile and atherosclerotic plaques. Senile plaques are a spherical group of amyloidal fibres in the brain and atherosclerotic plaques start from fatty deposits in the arteries.

    polypharmacy

    the use of a number of medicines at the same time.

    positive person work

    a person-centred approach to care developed by Kitwood to address the problem of malignant social psychology.

    preferred sense

    the sense the person prefers to use, probably the one that functions best. A person who struggles with their sight might prefer to listen to information.

    prevalence

    the number of people experiencing a certain condition at a given time.

    procedural

    in the context of memory, refers to the ability to remember how to do something.

    proprioception

    the perceptual information from the senses that allow the person to identify where parts of their body are.

    psychopathology

    pathology: disease or ill health; psyche: of the mind; disease of the mind.

    relaxation

    the experience of being at rest, free from tension or stress.

    reminiscing

    thinking about things that have already happened; thinking about the past.

    rephrasing

    saying what has already been said using different words.

    response

    an action occurring due to a stimulus.

    risk factor

    something that could cause harm.

    role model

    a person who acts out how things should or could be done for others to learn from.

    schema theory

    a cognitive theory that knowledge and information (memory) is stored in the brain in packets or collections, together with elements that link one schema to another.

    self-actualisation

    from the humanist approach, the experience of achieving one's potential, a peak experience. However, the person is not able to maintain this position and needs to start at the bottom of hierarchy again.

    self-efficacy

    the belief in our ability to achieve our goals.

    self-esteem

    the worth or value we attach to ourselves.

    semantic memory

    memory or recall related to knowledge and understanding.

    sense of place

    a concept in Todres et al.'s model of care that refers to a sense of belonging; the experience of being at home.

    short-term memory

    the ability to hold information for short periods of time to allow manipulation or use of it.

    social exclusion

    where people are rejected or their worth is not acknowledged by their community or society, usually due to gender, age, religion, race or disability.

    spatiality

    a concept from phenomenological philosophy that underpins Todres et al.'s model of care. It concerns a person's ability to understand their place in time and space; to understand their contextual situation both historically and in the present.

    sporadic

    occurs at irregular intervals without an identified cause.

    stepwise

    a progression of disease distinguished by a period of stability, then an acute step down to a reduced level of ability.

    stereotypes

    the application of certain characteristics to a group of people without reference to the individual differences between them.

    stigmatise

    to degrade a person due to a particular circumstance they find themselves in.

    stimulus

    something that arouses or motivates a person to action.

    sub-cortical encephalopathy

    an abnormal structure or function of brain tissue. Sub: under; cortical: brain, encephalopathy; this condition is usually found in degenerative diseases. It is therefore a disease of the inner part of the brain.

    superego

    according to psychodynamic theory, the part of the mind that has developed from the environment and is known as the conscience. It tries to force the person to comply with rules and behave morally.

    synaptic growth

    synapses or links between neurones are being made, which facilitate increased brain function.

    syndrome

    a group of signs or symptoms that when found in a collection are labelled together.

    temporal lobe

    lobe in the brain on either side of the head. The brain has two cerebral hemispheres – one on the left of the body and one on the right – and these are further divided into lobes. The frontal lobe is at the front of the head, the occipital lobe is at the back of the head, the parietal lobe is in between and the temporal lobe is on either side of the head.

    temporality

    a concept from the philosophy of phenomenology that means existing in time, a relationship with time.

    timalation

    an activity as part of positive person work established by Kitwood. It refers to the need to experience the world through all of the senses: through touch, smell, sound, sight and taste.

    togetherness

    a concept within the model of care by Todres et al. and refers to the need to experience the world with other people. This is also acknowledged by Kitwood.

    trajectory

    the expected progress or journey of a condition.

    turgor

    refers to the skin's ability to return to its usual shape; its elasticity. If a person is dehydrated, the skin will not have its usual turgor and take some time to return to its usual shape when pinched.

    uniqueness

    to be distinct or different from others; to be one of a kind.

    utilitarianism

    an ideology common in Western society that facilitates the ‘greater good’ when a moral or ethical decision is needed. The right choice is the one that achieves the most people being happy.

    validating

    acknowledging a person's perspective and recognising its importance for them.

    variant

    a type of something that differs from the usual.

    vascular

    pertaining to the blood vessels.

    vicariously

    occurring indirectly or through someone else.

    visuospatial

    refers to the visual perception of the relationship between objects: the distance between objects.

    visual

    relating to sight.

    whole systems approach

    an approach that looks at how all systems within a certain context work together, not focusing on individual ones – for example, with people, avoiding focusing on the biological system only.

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