Caring for People with Dementia

A Shared Approach

Christine Brown Wilson

• Publisher: SAGE Publications Ltd
• Year: 2017
• ISBN:
  9781526415110
• Edition: 1
• Topic: Medicine
• Subtopic: Nursing

Skills in caring for people with dementia are increasingly demanded of all health care practitioners as the numbers of diagnosed increase. Caring for People with Dementia presents Christine Brown Wilson's latest research into improving dementia care for both non-expert students and junior staff as well as more senior managers.

The text first guides the reader through the underpinning theory behind the different approaches to person centred and relationship centred care and provides case scenarios with a range of practical strategies staff and students have developed and implemented. It then presents the different levels of the organisational change using practical strategies adopting a person centred and relationship centred approach involving the person with dementia and their families.

This book will be indispensable reading for all nursing and healthcare students and practitioners who want to improve the quality of life for people with dementia.

Christine Brown Wilson is Associate Professor at the University of Queensland, Australia.

1 Common Myths Associated with the Condition Known as Dementia

Learning objectives

By the end of this chapter, the reader will be able to:

• Identify common myths and stereotypes associated with dementia.
• Critically discuss relevant evidence to dispel common myths and stereotypes relating to people with dementia.
• Explain the trajectory of dementia from assessment to end of life.
• Reflect on the implications for practice when working with people living with dementia and their caregivers.

Introduction

Dementia is a misunderstood term associated with a range of myths and stereotypes. This is due to many people not being aware what is meant by the term or why dementia might affect different people in different ways. The purpose of this chapter is to thoughtfully examine some of the myths around dementia that give rise to stereotypes, which may influence our thinking and our practice. To begin, let us examine why we need to consider dementia as a separate issue within our practice.

Dementia is a global phenomenon with over 46 million people affected worldwide. It is anticipated that 9.9 million cases of dementia will be diagnosed globally each year representing a global cost of US$818 billion (Prince et al., 2015). Dementia impacts on the individual, the family and wider society with caregivers of people with dementia providing more care than other disabling conditions such as stroke (Prince et al., 2015). Dementia is not a result of the normal ageing process but there is a greater likelihood of more people experiencing dementia as the population ages (Australian Institute of Health and Welfare, 2012; ADI & WHO, 2012). However, it is not older people alone that are at risk of dementia as there exists an increasing cohort of younger people receiving a diagnosis of ‘Young Onset Dementia’. Therefore, with growing numbers of people across the lifespan likely to experience dementia, this condition is now being recognised as a public health priority at a global level (World Health Organisation (WHO), 2015). This means that in whatever context you practice, you will need to be equipped with the skills, attitudes and knowledge to care effectively and safely for people living with dementia. This chapter aims to examine and dispel some of the common myths associated with dementia. The myths are arranged to represent the journey that people living with dementia and their caregivers may well follow. This will provide you as a nursing and healthcare professional with a deeper insight into what people living with dementia and their caregivers might have experienced in the time before they required the service you are working within. This will provide you with an opportunity to examine the implications for your practice when working with people living with dementia and their caregivers.

What is dementia?

Dementia is a progressive syndrome that causes deterioration in a person’s memory, language, personality, behaviour and ability to perform everyday functions. Dementia itself is not the disease process but rather the impact of the disease process on the person. Dementia is described as an umbrella term representing symptoms that might emerge from over 100 conditions such as Alzheimer’s disease, vascular disease, Frontotemporal Dementia (FTD), Korsakoff’s Syndrome and Lewey Body’s (Alzheimer’s Australia, 2015). The symptoms that affected individuals display depend on the underlying disease process and where it affects the brain. For example, FTD often affects a person’s personality leading to behaviour change where the family identify this as not representing the person they once knew. Sexual dis-inhibition is also related to FTD.

Different types of dementia may also affect language and the ability to understand what is seen or heard, creating difficulties in communication. Progression of dementia is variable and differs according to the underlying condition and person. Irrespective of when people begin to exhibit signs or receive a diagnosis the progression of dementia along with signs and symptoms may vary from person to person. This can be challenging for professionals, families and those in the community alike as everyone has a mental image of what it is to have dementia. For many dementia has negative connotations of losing one’s mind or not being able to care for oneself. Holding these negative images of dementia may result in many people rejecting the notion that you could live a positive life with dementia.

Diagnosis is an important part of the dementia journey and in effect signals the start of the journey. Whilst diagnostic labels are of benefit in the classification and treatment of disease, they may also bring stigma and stereotyping (Garand et al., 2009). Stigma has been described in Goffman’s seminal work as setting people apart, and labelling them as ‘the other’; this then moves on to stereotyping all people with the same label as having the same attributes and then giving society permission to treat ‘them’ differently (Goffman, 1963). This situation is evident in people being diagnosed with dementia as society withdraws contact from those who may not fit the societal norms of behaviour, hygiene or dress (Graham, 2003). As the dementia progresses, the person living with dementia finds it increasingly difficult to process multiple signals within social situations and respond according to social expectations. As a result, the person with dementia may receive negative reactions from others, resulting in additional stress for both the person and their caregivers. Subsequently the decision may be taken to not go out or meet up with friends, resulting in isolation of the person with dementia and their family caregivers (Garand et al., 2009).

Activity 1.1 Reflection

• Identify a situation where a person with dementia was admitted to the organisation in which you were working or on placement.
• What did the staff say about this person? Was the language positive or negative?
• What were the attitudes being expressed? Were these about what was happening or what might happen?
• Were these attitudes based on knowledge of this person or on stereotypes derived from past experiences?
• How did this influence the care the person received?

The reflective activity above is designed for you to consider how our attitudes and language influence our practice. When we are working in busy healthcare environments with competing and complex demands, nurses in particular tend to see the person with dementia as taking up more time than is available. This is often because the person with dementia is in an unfamiliar environment with their usual routines now disrupted. We will return to this experience in subsequent chapters to identify how this situation might be changed at both an individual practice and institutional level.

Poor practice often arises when healthcare staff operate on myths and stereotypes rather than considering the experience of the person for whom they are caring. Equally, people living with the early signs of dementia and their family caregivers may also subscribe to the same societal myths. For these reasons, we as healthcare professionals need to remain aware of the range of myths that may inhibit people from accessing early diagnosis or additional support as the dementia progresses. There is no single set of common myths relating to dementia. However, the following section identifies many of the common myths that relate specifically to the person with dementia’s journey from pre-diagnosis through to death. These are designed to provide an overview for the healthcare professional as a precursor to providing person-centred care and creating dementia-friendly environments where the person with dementia and their caregiver is respected and valued.

The first three myths focus on the person with dementia’s perspective in context to the different time points of diagnosis. Understanding these issues from the perspective of the person receiving the diagnosis of dementia will support us as healthcare professionals in understanding the journey many people have been on before they are in regular receipt of services. The remainder of the myths reflect the perspective of professionals, and sometimes family caregivers, as the dementia progresses. These are the myths that often stand in the way of person-centred care.

Myth 1: ‘Memory loss is a normal part of ageing and doesn’t mean I have dementia’

The cognitive changes that occur as part of the normal ageing process are primarily related to additional time required by the older person in processing and/or responding to information. It may take longer for the connections to be made, but the connections can still be made. However, the issues related to memory loss in dementia are due to the connections being lost within the brain. This may be due to vascular changes (such as occlusions from vascular changes in the brain) or the formation of amyloid plaques and tau tangles that have now been associated with Alzheimer’s disease. Prince et al. (2011) have developed four time periods that follow the trajectory of dementia when diagnoses might be possible (Figure 1.1). However, recent advances in brain research have changed current thinking in what represents an ‘early diagnosis’ of dementia (Brooker et al., 2014). For example, it is known that the plaques and tangles in the brain that have been associated with the cognitive impairment of Alzheimer’s dementia may be in the brain for many years before any symptoms emerge. This stage is referred to as a prodromal period where no clinical signs are apparent. However, there is insufficient evidence on the ability of different biomarkers to adequately calculate the risk of the person with these plaques and tangles to go on to develop dementia.

The first time point representing the earliest point of diagnosis would be the detection of neuropathology demonstrating changes in the brain with no concurrent clinical signs experienced by the person. To achieve the earliest point of diagnosis, the development of sophisticated biomarkers is required. Whilst some biomarkers have been identified this field of research is still very experimental and there is no real evidence that this time point could be established.

The second time point would be when individuals and those who know them well notice changes to the individual’s abilities. Cognitive tests at this point may result in a diagnosis of Mild Cognitive Impairment (MCI) which has been described as a prodromal syndrome to dementia. Although people with MCI are at increased risk of developing dementia, there is also evidence to suggest that MCI may not always progress to dementia (Albert et al., 2011; Han et al., 2012), which in turn may create uncertainty as to what this diagnosis means (Frank et al., 2006). These early cognitive changes may manifest in a person forgetting names, places and having difficulty with remembering recent events, difficulty in finding the right word, changes in depth perception and being easily distracted without this interfering with their daily life (Alzheimer’s Society, 2015). However, those receiving a diagnosis of MCI subsequently report anxiety, fear of embarrassment, loss of skills resulting in changes in social and family roles and loss of self-confidence (Frank et al., 2006). Whilst this would be the earliest possible opportunity for diagnosis of dementia with current technology, there are also counter views that early diagnosis at this time point might be counterproductive for the person or their supporters due to the lack of pharmacological or other treatments for MCI (Brooker et al., 2014).

Figure 1.1 Four time points for diagnosis in the trajectory of dementia

Activity 1.2 Reflection

• If you had a friend or relative who was behaving differently, how would you approach them?
• How would you raise any concerns you might have that it was dementia?
• Considering the person’s usual routine, what factors would you consider might indicate dementia rather than forgetfulness?

We have considered the first two early time points regarding potential diagnosis for dementia. Early cognitive changes may be distressing for the person experiencing them and also for their families. These may occur over a period of time and are often described by families as knowing that something was wrong but not being able to describe what exactly was wrong. Often the person experiencing these cognitive changes may deflect concerns stating that it is their age or that they have a lot to think about. This perception may also be influenced by the next myth that even with a diagnosis nothing could be done.

Myth 2: ‘There is nothing that can be done so what is the point of a diagnosis?’

Diagnosis is critical to identify what part of the brain is affected so that potential treatments both pharmacological and non-pharmacological can be explored. Diagnosis needs to be conducted by a geriatrician or psychiatrist with expertise in dementia or via a Memory Clinic to identify the type of dementia as this may provide an understanding of how symptoms progress. Diagnostic tests generally include medical history, brain imaging, physical and psychiatric assessment as well as neuropsychological assessment. Once a diagnosis is made pharmacological treatments are available for people with mild to moderate stages of dementia. The push for early diagnosis at time point 2 (Figure 1.1) is to ensure people have access to these treatments when they are likely to be most helpful. The most common type of pharmacological therapies are cholinergic drugs that block the actions of an enzyme called acetylcholinesterase which destroys an important neurotransmitter for memory called acetylcholine. These pharmacotherapies offer some relief from the symptoms of Alzheimer’s disease for some people for a limited time. They are currently approved for use for people with mild to moderate Alzheimer’s disease (Table 1.1). Memantine is the first in a new class of therapies currently approved for use for people with moderately-severe to severe Alzheimer’s disease. Memantine targets a neurotransmitter called glutamate that is present in high levels when someone has Alzheimer’s disease and acts by blocking glutamate thus preventing too much calcium moving into the brain cells causing damage. Providing a diagnosis of the type and severity of the disease enables the appropriate drug to be prescribed that will be most effective for the person thus helping them to retain function. People with dementia often say how these drugs have given them their life back and so the eff...

Table of contents

• Cover
• Half Title
• Publisher Note
• Title Page
• Copyright Page
• Contents
• About the Author
• Foreword
• Acknowledgements
• Publisher’s Acknowledgements
• Introduction
• 1 Common Myths Associated with the Condition Known as Dementia
• 2 Developing Relationship-Based Approaches to Dementia Care
• 3 The Role of the Organisation in Leading and Facilitating Relationship-Based Dementia Care
• 4 Developing a Biographical Approach in Care Practice
• 5 Managing Relationship-Based Approaches to Care
• 6 Creating Dementia-Friendly Services
• 7 Developing Community Through Dementia-Friendly Environments
• 8 Supporting the Families of People Living with Dementia
• 9 The Role of Technology in Dementia Care
• 10 Leading and Managing Change in Dementia Care
• Conclusion: Making a Difference
• References
• Index