DEMENTIA AWARENESS CERTIFICATE COURSE · Dementia Awareness Certificate Course – Unit One – Page 5. Access to Learning Resources Some learning activities will require you to access

DEMENTIA AWARENESSCERTIFICATE COURSE

UNIT ONE

THE SUBJECTIVE EXPERIENCE OF DEMENTIA

“minimum quod potest haberi de cognitione rerum altissimarum, desiderabilius est quam certissima cognitio quae habetur de minimis rebus”

(“the least knowledge that may be obtained of the highest things is more desirable than the most certain knowledge obtained of the lowest things”)

Thomas Aquinas, Summa Theologica I, q. 1, art. 5

“Illness is not something a person has, it’s another way of being” Jonathan Miller, The Body In Question

Introduction

Welcome to this course on Dementia Studies.

There has never been a more important time to consider dementia by health and social care professionals. Dementia is considered to be an ageing disease, with the often quoted statistic that one in five people aged over eighty years of age will have a dementia-related illness. It is estimated that 6% of the world’s population are aged sixty-five and over. However, within the United Kingdom, the figure is 17% (Prince 2008). In the United Kingdom, the population has gradually been ageing over the last half a century:

• In 1951 there were 13.8 million older people• In 2003 there were 20 million (an increase of 45%)• By 2031 there will be an estimated 27.2 million (an increase of 36%)

In relation to dementia:

• In 2001 it was estimated that there were 700,000 people with dementia• By 2010 it is expected to rise to 850,000• By 2041 this figure is expected to be in the region of 1.5 million (a 47% increase)

Dementia Awareness Certificate Course – Unit One – Page 1

Such figures have resulted in talk of a “demographic time bomb” that needs to be considered now before it is too late. The implications of such demographics are reflected in economic costs (AS 2007). For example, the total cost per person per annum with dementia in different settings is estimated as:

• People with mild dementia in the community = £16,689• People with moderate dementia in the community = £25,887• People with severe dementia in the community = £37,473• People with dementia in care homes = £31,296

Multiply these figures with the numbers stated earlier and you can see that society needs to be considering people with dementia now. These considerations have led to the publication of the first National Dementia Strategy for England (DH 2009). It states:

“The aim of the Strategy is to ensure that significant improvements are made to dementia services across three key areas: improved awareness, earlier diagnosis and intervention, and a higher quality of care. The Strategy identifies 17 key objectives which, when implemented, largely at a local level, should result in significant improvements in the quality of services provided to people with dementia and should promote a greater understanding of the causes and consequences of dementia. This Strategy should be a catalyst for a change in the way that people with dementia are viewed and cared for in England.”

The three key areas named in the Strategy will be considered throughout this course.

The purpose of this course on dementia is to improve your clinical practice when working with people with dementia. It seeks to do this by considering seven distinct but interrelated areas that, collectively, will give you a greater degree of awareness of dementia and what you can do to help. These units seek to address the following questions:

• What is it like for someone to have dementia?• What exactly is dementia?• What should our practice be like?• Can we communicate with people with dementia? If so, how?• What can we do to help people with dementia?• How can we help family and friends caring for a loved one with dementia?• What are the legal and ethical issues of working with people with dementia?


Throughout this course, common themes will be evident. For example, the United Nations Principles for Older Persons (United Nations 1991) can be seen to be essential. These are:

• Independence• Participation• Care• Self-fulfilment• Dignity

With specific regard to people with dementia, these five principles can be seen to be essential:

• Independence: a need to promote the independence of people with dementia

• Participation: to facilitate the participation of people with dementia in their own care

• Care: to ensure that the care we give is what is required and is person-centred

• Self-fulfilment: to foster a positive outlook by ensuring that people with dementia maintain a meaning and a purpose in their lives

• Dignity: to ensure that people with dementia are treated with dignity and respect at all times

Overview of the Course

This course is divided into seven units, each of which deals with a particular aspect of dementia. Each unit also addresses one or more of the course learning outcomes so that when you have completed the entire course you will have achieved all the course learning outcomes as follows:

By the end of this course you will be able to:

• Examine critically the nature of the subjective experience of the person with dementia, and demonstrate in-depth knowledge of the importance of this as the necessary starting point for any consideration of dementia

• Demonstrate an in-depth knowledge of the nature of dementia from a bio-psycho-social perspective and evaluate the implications for your practice

• Examine critically the concept of person-centred care within the work setting and its relevance to dementia care


• Demonstrate in-depth understanding and application of the importance of communication with people with dementia at varying stages of the illness

• Examine critically the guidelines relating to the care and management of older adults with dementia, and consider the implications in relation to specific client groups, and local policy and practice pertaining to this, and make recommendations for your own local policy and practice based on your analysis

• Demonstrate in-depth understanding and application of the importance of working with families and carers of people with dementia

• Examine critically the legal and ethical contexts of caring for a person with dementia, and demonstrate in-depth understanding of the implications of these to your practice

In order to address these learning outcomes, this distance learning pack is divided into seven units as follows:

Unit 1: The Subjective Experience of Dementia

This unit will begin to address learning outcome one (stated above). This learning outcome will be divided into a set of more specific learning outcomes to guide your studies. In this unit you will explore what it is like for a person to have dementia, review the trajectory of the illness, and critically examine the qualitative research that has been carried out to explore the lived experience of dementia.

Unit 2: The Condition: What is Dementia?

Unit 3: Care

This unit will focus on learning outcome three above. This learning outcome will be divided into a set of more specific learning outcomes to guide your studies. In this unit you will critically examine the nature of care (personhood) and the practice of care (the person-centred approach). In this unit you will explore these and critically examine how these can be achieved at local level.


Unit 4: Communication

This unit will focus on achieving part of learning outcome four (stated above). To guide your studies, this part of the learning outcome will be divided into a set of more specific learning outcomes related to the clinical care of older adults with dementia. You will examine what communication is, and why this is of importance when working with people with dementia, and explore ways in which this can be facilitated and achieved at local level.

Unit 5: Carrying Out Care: Interventions

This unit will focus on achieving learning outcome five (stated above). To guide your studies, this part of the learning outcome will be divided into a set of more specific learning outcomes related to the clinical care of people with dementia. In this unit you will examine the evidence-base for interventions employed when working with people with dementia, using keyword searches, information technology and relevant web sites to find and analyse the evidence-base for treatment, management and care of people with dementia. Through an exploration of the evidence you will examine the relevant evidence-base for people with dementia at various stages of the illness trajectory.

Unit 6: Carers: Working with Families

This unit will focus on the part of learning outcome six (above) that is related to working with families. To guide your studies, this part of the learning outcome will be divided into a set of more specific learning outcomes related to working with families. In this unit you will continue to develop your skills in searching the evidence-base, but you will look at a variety of situations that carers experience, and the pharmacological, psychosocial, and economical issues related to caring for a person with dementia. Emerging national and local protocols for supporting carers will be critically examined and issues related to the implementation of these will be explored.

Unit 7: Challenges: Legal and Ethical Issues

This unit will focus on the part of learning outcome seven that is related to the challenges faced in working with people with dementia (stated above). To guide your studies, this part of the learning outcome will be divided into a set of more specific learning outcomes related to the legal and ethical contexts of working with people with dementia. In this unit you will examine in-depth some of the pertinent national legislation related to working with people with dementia and critically examine its implication for your practice. Ethical theories will be explored and these will be critically examined in relation to your practice. You will demonstrate in-depth understanding of these issues, and explore ways in which these can be facilitated and achieved at local level.


Access to Learning Resources

Some learning activities will require you to access electronic databases and web sites. Therefore, you will need access, at home, at work or in a library, to a computer that has Internet access.

Each unit concludes with a selection of sources for “Further Reading”. These have deliberately been kept to a minimum and largely relate to:

• Downs M and Bowers B (eds) (2008) Excellence in Dementia Care: Research into Practice Open University Press: Buckingham

• NICE/SCIE (2007) Dementia: a NICE/SCIE guideline on supporting people with dementia and their carers in health and social care

The Downs and Bowers (2008) book offers an excellent overview of current thought pertaining to dementia care, whilst the NICE/SCIE (2007) guideline covers the evidence-base for best practice. You can access the NICE/SCIE (2007) guidelines at the following web address:

http://www.scie.org.uk/publications/misc/dementia/dementia-fullguideline.pdf

This is a PDF file and, as such, you will need to have an Adobe Acrobat Reader in order to access it. If you already have an Adobe Acrobat Reader downloaded, you can go straight to any PDF file. If not, the first time you try to download a PDF file, you will be asked if you want to download Adobe Acrobat. Follow the very simple instructions and you will be able to download this tool which will enable you to read all subsequent PDF files you need.

Many of the learning activities will require you to read, critique, analyse, evaluate and/or compare certain chapters, articles, research papers or other literature, including web sites and electronic journal articles. These sources have been selected for their informative nature. Where possible, they are web-based. However, when published materials are referred to, these have been chosen for their accessibility. Most health and social care libraries will have access to these sources.

This course places a great deal of emphasis on you reflecting on your current practice and the implications of the information contained within this course for your future practice. Throughout, there is an acknowledgment of the importance of our values and beliefs, and how these can impact on the quality of our practice. As such, it would be useful to commence this course with an introductory reflective activity that explores your value base.


Reflection on Values

INTRODUCTORY ACTIVITY – ALLOW 60 MINUTES

Reflecting on your values

This activity is based on a values clarification exercise detailed by Dewing (2007). Please note that there are no right or wrong answers; this is just an opportunity to explore your own value-base prior to commencing this course.

Step One:

Get four sheets of paper and write the following statements at the top:

• On Sheet One, write: “I believe that the ultimate purpose of working with people with dementia is…”

• On Sheet Two, write: “I believe that this purpose is best achieved by…”

• On Sheet Three, write: “I believe my contribution to this purpose is…”

• On Sheet Four, write: “I believe that to enhance my contribution, I need to…”

Step Two:

On each sheet of paper, write all your possible answers (keeping your responses limited to single words and/or short phrases). For clarity, you may find it easier to write each possible answer on a separate line.

Step Three:

Consider each of the lists you have generated and see if there are any common themes/categories that appear to emerge out of your responses. If so, group these together under that common theme/category.

Step Four:

With regard to those common themes/categories that you have identified, list them in order of priority (from most important to you to least important to you).


Step Five:

Conclude your work by writing a summary statement that encapsulates all of what you view as important in response to these four statements.

It does not matter how novice or experienced you are as a practitioner, a reflective exercise on our values is always useful to improve our knowledge of ourselves and our practice. As Dewing (2007:47) notes:

“if I state that I am a person-centred practitioner, as a professional I am obliged to look at my beliefs to see if they are congruent with what is already known about the area. Reflecting on values and beliefs is vital but it must also be as part of a dialogue with other sources of evidence”

It is to be hoped that as you work through his course, you will be able to reflect on your own values in the light of these new sources of evidence.

References

Alzheimer’s Society (2007 Dementia UK: the full report Alzheimer’s Society: London [online:]http://alzheimers.org.uk/site/scripts/download_info.php?fileID=2 (accessed: 21-03-09)

Dewing J (2007) Values underpinning help, support and care In: Neno R, Aveyard B and Heath H (eds) Older People and Mental Health Nursing: a handbook of care Blackwell: Oxford

Downs M and Bowers B (eds) (2008) Excellence in Dementia Care: Research into Practice Open University Press: Buckingham

NICE/SCIE (2007) Dementia: a NICE/SCIE guideline on supporting people with dementia and their carers in health and social care [online:]http://www.scie.org.uk/publications/misc/dementia/dementia-fullguideline.pdf (accessed: 27-09-08)

Prince M (2008) Epidemiology In: R Jacoby, C Oppenheimer, T Dening and A Thomas (eds) Oxford Textbook of Psychiatry Oxford University Press: Oxford

Scottish Intercollegiate Guidelines Network (2006) Management of Patients with Dementia [online:]http://www.sign.ac.uk/pdf/sign86.pdf (accessed: 27-09-08)

United Nations (1991) Principles for Older Persons Resolution 46/91 [online:]www.wao.gov.uk/assets/englishdocuments/DTOC_key_message_Sarah_Stone_slides.ppt (accessed: 23-03-09)


Introduction

The purpose of Unit One is to explore the subjective experience of dementia. It is only from this as our starting point that we can truly seek to understand the condition and provide care that is appropriate and meaningful to the person. By working through this unit, you will explore your own perceptions and experiences of working with people with dementia, and compare these to research that has specifically addressed the subjective experience of people with dementia. This will involve, firstly, exploring what it is like for someone to have dementia. Then, considering how the illness progresses and, in particular, how this is experienced by the person with dementia. Finally, qualitative research that has specifically addressed these issues will be critically evaluated.

What is it like to have dementia?

Dementia is a chronic and progressive disease that at the present time has no cure. However, before you consider the disease process, it is important to consider the person themselves, and what it is like to have dementia.

Completing Activity 1.1 will enable you to begin considering what it is like to have dementia.

ACTIVITY 1.1: QUESTION

Allow 15 minutes

Consider a person you have worked with a long time (or several people who give you an insight into the life course of dementia).

Answer the following questions:

• How did they experience the illness?• What stages did they go through?• What were the implications for the person at these stages?

Dementia can elicit thoughts and feelings that any one of us would feel when experiencing uncertainty and/or fear in a particular situation. Indeed, Goldsmith (2004) titles his book about people with dementia as “In a Strange Land”. If you can no longer remember where you are, or who these people are around you, where you were going – or why, then such thoughts can lead you to feel scared, or angry and upset – towards others and/or yourself. As such, it is important to gain an understanding of the “lived experience” of dementia in order to empathise with the person.


There are various ways in which we can attempt to do this. Kitwood (1997) outlined seven “access routes” into the world of the person with dementia (fig 1.1). Although not every “access route” is beneficial for every person (as there are various learning styles (Kolb 1985)), collectively, they offer a variety of avenues into the lived experience of dementia. It is acknowledged that some may be more beneficial than others for your own individual learning. However, attempting each will highlight your possible preferred ways of learning.

Although, ideally, it would be useful to speak to the person with dementia directly and ask them what it is like, this may be too traumatic for them. Kitwood (1997) proposes seven ways in which we can attempt to gain some insights into what it is like to have dementia. Each route shall be briefly discussed, and then an activity will assist you in gaining some insights from that route.

1. Autobiographies: Reading what actual people with dementia write about their experiences is a good means of gaining insight into the lived experience



Read the following:

“If I am no longer a woman, why do I still feel like one? If no longer worth holding, why do I crave it? If no longer sensual, why do I enjoy the soft texture of silk against my skin? If no longer sensitive, why do moving lyric songs strike a responsive chord in me? My every molecule seems to scream out that I do, indeed, exist, and that existence must be valued by someone! Without someone to walk this labyrinth by my side, without the touch of a fellow traveller who understands my need of self-worth, how can I endure the rest of this uncharted journey.”

McGowin (1993): 123-4

What does this quotation tell you about the lived experience of dementia?

In what ways are our personal identities challenged by dementia? (you may wish to read Hope (1994) who offers valuable insights into this area)

2. Interviews: Speaking to people with dementia directly to elicit their experiences of the illness will assist in gaining an insight into what it is like to have dementia.


Locate some articles where people with dementia have been interviewed. For example, you may consider:

• Bender and Cheston (1997)• Clare (2002) • Phinney (1998)

What do they tell you about the experience of having dementia?

3. Attending: the ability to think “outside the box” when attending to the person with dementia in order to ascertain some rationale for their verbal speech that is more a part of their reality rather than being a part of ours



Kitwood (1997) illustrates the attending “access route” by considering Janet. She has come into a residential home for respite care and often looks out of the window and talks about the trains that are passing by. However, the residential home is nowhere near a railway. When it is realised that Janet and her husband frequently used to travel by train to see their children (and her husband still does when she is in respite), could this be Janet showing some inkling of this? Perhaps she is expressing her desire to go, too.

Think of a situation in which a person with dementia expresses something that appears strange upon first hearing.

Then spend some time considering it in a wider context (i.e. “outside the box”)

Note down your possible interpretations.

4. Observing Behaviours: the ability to think “outside the box” when observing behaviours that the person with dementia is engaging in.


Kitwood (1997) uses the example of Arthur, a once respected member of his community, but now frail and in a wheelchair. He hits out and bites the carers. He notes:

“biting others may, almost literally, be his last way of “making a mark”.”(Kitwood, 1997:75)

Can you think of examples in your own life where actions may well be interpreted as a means of communication? (Note, we shall consider this more fully in Unit 4)

5. Similar Illness Experiences: hearing the experiences of people who have experienced an illness that has similar features to dementia, but who are able to return to our reality, in order to offer us valuable insights. The examples cited are depression and delirium (both will be discussed in Unit Two).



Rowe (1983:11-12), on her experience of depression, writes:

I’m frightened all day of the night to come because I know I’ll get restless and tense up, won’t be able to swallow will start feeling numb and petrified – all the time I drum into myself that I’ve got to snap out of it. There’s far more going on in my head than what’s on paper, I just feel all the time there is a way to unjumble it all please somebody to help me to find it.

(Rowe 1983:11-12)Read the following for an appreciation of the experience of delirium:

Fagerberg I and Jonhagen ME (2004) Temporary confusion: a fearful experience Journal of Psychiatric and Mental Health Nursing 9(3):339-346

What do these tell you about the effect of confusion upon the person experiencing it?

In what ways does this give you an insight into the lived experience of dementia?

6. Poetry: Kitwood (1997:76) notes:

“There are some aspects of the human experience for which ordinary prosaic forms of speech are too thin, too linear, too precise; poetry provides a more condensed and powerful linguistic form.”


Read the following two poems:

Hart (2002:137-138)If I hold your armI know who I am,if I follow you aroundholding your armand if we sit together on the sofaI’ll know who I amand why I am. Where you goI’ll go, holding your arm,where you sit I’ll sit,I’ll know who I am thenand why I am.


Killick (1994:12-13)I’m sure it isn’t methat’s gone round the bend.It seems as ifI’m like a buzzing toy –it buzzes round and roundbut it doesn’t mean much.You have hurt me,You have hurt me deeplyBecause you will go away.

What insights can they teach us about the lived experience of dementia?

7. Roleplay: through attempting to experience some of the aspects of the dementing process for ourselves, we can gain valuable personal insights.


Consider the following situation:

You have gone on your own to Bulgaria. You decide to see the “real Bulgaria” and so, hiring a car, you take off into the hinterland. After some distance, your car breaks down. You are stuck in the middle of nowhere, with no mobile phone reception.

How do you feel?

After some time, an elderly man comes towards you on his horse-drawn cart. You flag him down. It soon becomes apparent that he does not speak English.

How do you try to communicate your present predicament?

How do you act?

How do you feel?

How does this reflect the experience of the person with dementia?


These seven “access routes” give us some insight into the lived experience of dementia. Some may be more useful than others (not everyone can appreciate learning through poetry and/or roleplay, for example). However, it is assumed that at least one of these routes has given you some insights. However, the question remains, what is this illness called dementia? Bender and Cheston (1997) argue that the conceptualisation of dementia as a neuropathological illness is socially constructed and, due to the dominance of the medical approach, has marginalised exploration into alternative views (this will be discussed more fully in Unit Two).

Steeman et al (2004:730) note that:

“the experience of living with dementia is presented in the literature as a highly individualized and complex process consisting of several progressive stages, starting long before diagnosis is or can be given.”

The “several progressive stages” have been debated within the literature. From a social constructionist point of view, Bender and Cheston (1997) proposed the following three stages:

• Stage one: feelings engendered by the process of dementia• Stage two: behaviours provoked in relation to the decline• Stage three: social nature of emotional behaviour

Each of these will be explored in turn.

Stage One

When a person is given a diagnosis of dementia, a range of emotions is experienced. Bender and Cheston (1997) outline four such emotions. However, they are clear to point out that their model is a “heuristic” one rather than a sequential one, such as those proposed in bereavement (Parks 1996). The first emotion they discuss is anxiety. This takes two forms:

• Anxiety towards what is happening to them• Anxiety towards what will happen to them

Such anxieties are illustrated when the person with dementia asks such questions as:

• What will happen to me? How long have I got?• Will the person/people I love stay with me? Will they abandon me?• Will they have me put away in a home?• Will I end up incontinent? Immobile?


Depending on one’s understanding of the nature of anxiety, the interventions employed to deal with these issues will be different. For example, Kelly (1955) interprets anxiety within his person construct theory, that is, a cognitive viewpoint. Kelly (1955:495) notes that:

“the recognition that the events with which one is confronted lie outside the range of convenience of one’s construct system”

Bender and Cheston (1995) state that this is how many people with dementia experience the illness initially. It is a condition that lies “outside” our normal convenience zone. Although the numbers of people with dementia in the United Kingdom are stated to be in the region of 700,000, and, as a result, most people have come into contact with either a person with dementia, or know someone who has, being told that you have dementia is somehow different. The newspaper items that periodically show poor quality care come to mind, when they state general perceptions of having dementia as “losing your mind” and becoming a “vegetable” with no dignity. Maybe current views by Warnock (2008), arguing that people with dementia have a “duty to die” may increase their anxieties. However, this is if they know that they have dementia. But what if they are not told the diagnosis? How much anxiety would that provoke in the individual? Maybe as a consequence of the anxiety experienced by loved ones, they may engage in acts which Kitwood (1997) referred to as “malignant social psychology” (discussed in Unit Three). As a consequence, the person with dementia may experience:

• The unwillingness of those around them to give them a diagnosis• Their spouse being given information that is not shared with them • Being given false reasons or explanations as to what is occurring (for example, being told

they are attending a Day Hospital to help them with a minor physical symptom)

It is hardly surprising that people with dementia experience anxiety. Indeed, out of eighty-six people with dementia assessed in one study, forty-nine were displaying signs of anxiety – that is, over half (Solomon and Szwarbo 1992). Other studies have found similar prevalence rates in vascular dementia (Ballard 2000) and Alzheimer’s disease (Thomas 2008). This is further compounded by societal views of the illness. As such, the Alzheimer’s Society (2008) released a publication challenging the stigma of dementia within society in an attempt to decrease some of these anxieties.

Secondly, the emotion of depression may be experienced by the person with dementia. Depression will be discussed more fully in Unit Two. However, Bender and Cheston (1995) make the following observations from their reading of the literature:

• Depression may mimic the symptoms of dementia, thus leading to issues around correct diagnosis: is it depression or is it dementia?

• Depression may be a precursor to dementia


• Depression is the most common affective response in people with dementia

As such, it is important to understand what depression is (as it can be treated) and to differentiate these symptoms from dementia (which cannot be cured at the present time).

Thirdly, the realisation that the person with dementia can no longer do the things they once could, can lead to a grief reaction. Although grief is closely associated with depression (Kubler-Ross 1969), it is highlighted by Bender and Cheston (1995) because of its underestimation by professionals. Indeed, there are close parallels between dementia and the grieving process (Benbow and Quinn 1990; Solomon and Szwarbo 1992).

Finally, there is the existential sense of despair that can categorise the emotional response to the illness by the person with dementia. Bender and Cheston (1995:518) note that:

“People with dementia can experience a profound, existential sense of emptiness and absence which is related to the actual or anticipated damage to their sense of self. The deep despair and terror that this sense of absence can engender may be compounded by the neglect of those around the person.”

There are few options open to the person with dementia to discuss some of the profound issues they are faced with. This could partly be the result of a reluctance of the individual to face these issues (for example, Solomon and Szwarbo (1992) note the frequency of denial in people with dementia) and, partly, the reluctance of those coming into contact with them to deal with these issues (for example, carers merely saying “there’s nothing to worry about” and professionals busying themselves with form filling tasks and failing to engage the person in any meaningful dialogue).

Stage Two

Once there has been an acknowledgement of the emotional issues for the person with dementia, there is then a need to consider some of the behaviours that occur as a consequence. The second stage of the Bender and Cheston (1995) model considers the means by which individuals adapt to the process of decline. They outline the following possible responses:

• Denial or a lack of insight: the balancing act between too much insight (resulting in a sense of terror at what is to come) and too little insight (resulting in unrealistic expectations of their own abilities and, as a consequence, being noncompliant with care offered)

• To live in the past: the tendency to talk about the past is no longer seen in terms of an illness (as shown by Butler 1963), but rather as a means to: (a) give the person a sense of identity and, (b) process information on an emotional level


• Attachment: the development of “parent fixation” (Miesen 1993; Browne and Shlosberg 2005) (that is, calling out for mother or father) is the means by which the person with dementia attempts to hold onto the primary attachment in one’s life

• Apathy and withdrawal: people with dementia withdraw as a result of the illness: either because they are excluded by others (Kitwood 1997) or they exclude themselves as a form of defence mechanism (Sinason 1992)

Whilst not exhaustive, these approaches by the individual to having dementia offer a means by which to understand why the people with dementia act the way they do.

Stage Three

Finally, Bender and Cheston (1995:524) make reference to the social consequences of the emotions felt by the person with dementia. They note that:

“if we do not understand the emotional world of people with dementia, then we cannot fully understand their social behaviour; it will appear to be meaningless, or we are liable to misunderstand it.”

They consider this stage as comprising the following:

• The display of emotional behaviour: according to Radley (1988) emotions range from “emotional gestures” (reflecting upon one’s emotions) to “emotional postures” (the immediate display of emotion). This process is affected by the social environment which the person with dementia inhabits

• The social control of behaviour: the social environment has an effect on whether people with dementia can display their emotions, or need to suppress them


Reflect on these three stages as proposed by Bender and Cheston (1995) with regard to the subjective experience of dementia.

In what ways does it reflect the experience of people with dementia that you work with?

What are the implications of such an approach to the care you give?


Bender and Cheston’s (1997) three stage model offers some useful insights into the dementing process. However, a more robust model is outlined by Steeman et al (2006) in their review of qualitative research considering the lived experience of early-stage dementia. Their findings are represented graphically below (fig 1.2).

Although this oversimplifies their findings, it gives a basic understanding of the lived experience of dementia, based on research findings. The advantage of this model is its descriptive analysis of how the person with dementia copes with being diagnosed with the condition. Although it only reviewed papers considering dementia in the early stages, Steeman et al (2004) do show the importance of diagnosis – it is central to their findings as it considers the “pre-diagnostic” phase of gradual awareness that there is a problem, through to the accurate “diagnosis” phase that declares them to have dementia, and, ultimately, to adjusting to life in the “post-diagnosis” phase. They helpfully categorise both the emotional rollercoaster that can ensue (from fear and uncertainty to anxiety and, ultimately, acceptance) and the various methods utilised by the person to cope (from analysing themselves for further signs and symptoms and/or avoiding situations that may show their deficits, through to denying the validity of tests that diagnose the problem as dementia, to self-protective and integrative strategies that help to address issues of personal identity and feelings of despair and/or hope respectively). Some of these coping strategies are listed in Table 1.1 below.


Table 1.1: Coping Strategies

Self-Protective Strategies: Integrative Strategies:

Express uncertainty of extent of memory problemsDenial of problemsNormalising perceived changesBecoming argumentativeMaintaining hope

Making the best of a bad situationFocusing on good thingsFinding out more about dementiaChanging rolesUsing humour


Consider the findings of Steeman et al (2004).

Reflect on the strategies they outline for coping with living with dementia?

Compare these with people you have worked with who have dementia. Are there examples of these being employed by the people you know?

Do they mainly employ the positive and/or negative approaches to living with dementia?

Effects of Being Diagnosed with Dementia

Much has been made of the importance of early diagnosis of dementia in government policy and, in particular, its problems. For example, the NICE/SCIE (2007:80) guidelines note:

“Factors inhibiting the detection process include denial on the part of affected individuals, families and professionals, and limited impact on families of changes in the individual, as well as limited awareness of the dementia syndromes and limited diagnostic skills amongst practitioners in different disciplines.”

The consequences of these are delayed diagnosis which, ultimately, leads to delayed interventions. The recently published National Dementia Care Strategy (DH 2009) also acknowledges the importance of early diagnosis. However, the purpose of this unit is to evaluate the effects of diagnosis on the person.

Let us now consider the specific effects of being diagnosed with dementia.



In this activity you will be examining the effects of dementia on individuals. Please read the following document:

http://www.alz.org/national/documents/report_townhall.pdf

From your reading of this document, write your answers to the questions below.

What are the main issues that people with dementia state?

Describe how these themes relate to your own experiences of working with people with dementia.

There is a growing recognition of the need to understand the experiences of people with dementia. Due to the nature of the illness, this has often proven difficult. However, one such initiative was run by the Alzheimer’s Association in 2007-8. They held four meetings in the United States with the intent of eliciting from those in the early-stages of the illness a description of some of their experiences. Professionals and carers were present and, while they could listen to the discussion, it was made clear to them that the main focus would be on the people living with dementia. The findings of these discussions were referred to as the “Town Hall” meetings, and were published in August 2008. From these discussions, the following themes were identified:

• Stigma• Dissatisfaction• Uncertainty• Concerns• Desires

Stigma

The stigma attached to an illness such as dementia is immense. It not only affects the individual, but also other family members and the community at large. An example of each will serve to illustrate this point:

• The person with dementia: for example, isolating themselves for fear of making a fool of themselves in public – this could be as a result of simply being unable to remember things (Bartlett 2007)


• The carer: for example, utilising stigmatising practices as outlined in malignant social psychology (Kitwood 1997)

• Societal exclusion: for example, a person with dementia being placed in an institutionalised care setting unnecessarily and/or unwillingly simply due to a lack of resources (Graham et al 2003)

It has been noted that stigma attached to dementia is more prevalent in the United Kingdom than in the United States of America (Sorensen 2009). This was one of the reasons that the Alzheimer’s Society produced its document “Out of the Shadows” in October 2008.


In this activity you will be exploring stigma and dementia. AS (2008:xv) state that:

“The stigma of dementia was very pervasive. Media representation of dementia often did not help but the research indicated that the reaction of people close to them, as well as the responses of professionals, had a more detrimental impact on people with dementia and their carers.”

Consider this quotation and reflect upon how dementia is viewed by:

a. the media?b. the family and friends of the person with dementia?c. the health and social care professionals?

In what ways do their views have a “detrimental impact on people with dementia and their carers”?

Please read the following document and compare your answers with their findings:

http://www.alzheimers.org.uk/outoftheshadows

Dissatisfaction

The second factor highlighted in the Town Hall study was dissatisfaction. This specifically referred to issues surrounding the diagnosis process and access to relevant services as a consequence of the diagnosis. They found that people with dementia have problems with:

• getting a diagnosis promptly• the burden of the assessment process


Lecouturier et al (2008), in their analysis of the behaviours displayed in the diagnostic process, identified eight “disclosure behaviours”:

• Preparing for disclosure (eg, arranging a meeting, preparing the person, etc)

• Integrating family members (eg, involving carers, avoiding collusion, etc)

• Exploring the person’s perspective (eg, explore person’s ideas about the condition)

• Disclosing the diagnosis (eg, tailor information to individual, check understanding, etc)

• Responding to person’s reactions (eg, explore their emotions, elicit and respond to their questions)

• Focusing on quality of life and well-being (eg, foster hope and explore coping strategies)

• Planning for the future (eg, discuss available support services, negotiate a management plan, etc)

• Communicating effectively (eg, develop rapport, involve the person, etc)


Consider for a moment these “eight disclosure behaviours” outlined by Lecouturier et al (2008) in their review of best practice.

Reflect for a moment on the people with dementia you work with, and compare their experiences of being diagnosed with those outlined by Lecouturier et al (2008).

The article can be accessed at

http://www.biomedcentral.com/content/pdf/1472-6963-8-95.pdf

Uncertainty

The Town Hall Report notes (AS 2007:30):

“A lack of knowledge about accessible and appropriate support services available in communities was repeatedly expressed.”



What services are “accessible and appropriate” in your area for people with dementia?

Concerns

Fourthly, the Town Hall Report (AS 2007) notes the concerns expressed by people with dementia. These revolved around two particular areas:

• Fear of the decline and its impact on loved ones to provide care for them• Loss of independence, for example, the inability to continue to drive

Desires

Finally, the Town Hall Report (AS 2007:30) considers the desires of the people with dementia. They write that:

“If they are enabled to continue participating in the activities they have always enjoyed then the current practice of dwelling on their condition and treating them as a disease will be assuaged. In their hearts, people with early-stage Alzheimer’s want to enjoy life and they demand that those without the disease assist them in achieving their pursuit of happiness to the extent possible.”


With regard to these last two points (concerns and desires), consider people with dementia you work with in the light of these comments.

In what ways do you allay their concerns and fears?

In what ways to you actively engage them in their care and “assist them in achieving their pursuit of happiness”?

The Course of the Illness

Dementia is a chronic and progressive disorder that, at the present time, is incurable. So far, you have been considering some of the experiences that are felt by people with dementia.


As it is a chronic illness, it seems appropriate to look at some of the chronic illness trajectories when considering how the illness progresses. In this part of the Unit we will examine the trajectory of the illness. For some of you this will be a review, for others it will present deeper understandings of how the illness progresses than you may have had previously.


In this activity you will be examining the illness trajectory of dementia, as conceptualised by clinicians and by people with dementia.

What do you understand by “stages” in dementia?

Access the following webpage:

http://micral.com.au/micral03s.html

What do you now understand by the “stages” of dementia?

Stages of Dementia: a Medical Approach

Traditionally, dementia was seen as an illness that comprises three stages, with each stage being defined by a score on the Mini-Mental State Examination (Folstein et al 1975). So, for example, NICE (2007) could state the following:

• Mild dementia: MMSE = 21-26• Moderate dementia: MMSE = 10-20• Severe dementia: MMSE = <10


Consider people with dementia you work with in these “stages” of mild, moderate or severe.

Although their cognitive functioning falls into the MMSE scoring range, in what way is their functional ability reflected in these scores?

How useful is a MMSE score when working with a particular person with dementia?


http://micral.com.au/micral03s.html

Within clinical and research studies, a preferred classification of the stages of Alzheimer’s disease is that proposed by Reisberg et al (1988). (This can be accessed at:http://ec-online.net/Knowledge/articles/ alzstages.html ). This is referred to as the FAST scale and comprises seven stages:

1. A normal adult with no cognitive decline

2. A normal older adult with mild cognitive decline but no dementia

3. Early Alzheimer’s disease, where memory loss is more apparent to family and friends (eg unable to recall names of people after just being told)

4. Mild Alzheimer’s disease, where more pronounced deficits are seen (eg finances, knowledge of current affairs, etc)

5. Moderate Alzheimer’s disease, where more assistance is required (eg getting dressed) and decreased ability to know the date and time

6. Moderately severe Alzheimer’s disease, where even more assistance is needed with activities of living (for example, eating and bathing) and the person now begins to have problems recognising close family members

7. Severe Alzheimer’s disease, where person becomes incontinent, immobile and unable to verbalise needs and, ultimately, death is the outcome (eg pneumonia)

Such a conceptualisation of the process of the illness is useful in that it recognises both the cognitive deterioration and the functional deterioration as a consequence of the illness.

However, there has been some work carried out on exploring the subjective experience of dementia from diagnosis to death that may offer a more qualitative understanding of the nature and course of the illness


Stages of Dementia: a Subjective Approach

Keady and Nolan (1994) proposed a longitudinal model of early-onset dementia that consists of eight stages:

• Slipping• Suspecting • Covering up• Revealing • Confirming • Surviving • Disorganisation • Decline and death.


Considering Keady and Nolan’s (1994) longitudinal model, reflect on the people with dementia that you have worked with.

For an explanation of the stages, you could access:

http://mcgraw-hill.co.uk/openup/chapters/033521262X.pdf

How representative are these stages to your experiences

• Slipping• Suspecting• Covering Up• Revealing• Confirming• Surviving• Disorganisation• Decline and Death

This “temporal” model of the lived experience of dementia has one major limitation. Lawrence and Head (2005) note the absence of “acceptance” from this model. Whereas Kubler-Ross (1969) specifically advocated acceptance as the final stage of the dying process, and others have noted the importance of acceptance with regard to dementia (AS 2007; AS 2008; Steeman et al 2004), Keady and Nolan (1994) end their trajectory on a less positive note, namely, “decline and death”.



In order to gain an understanding of what it is like to have dementia, you can do no better than to read an account. Several have been published to date. Select one (or more if you wish) of the following and read it, noting in particular aspects of their “lived experience” and reflect on how their story relates to those you work with.

Books - Autobiographies:

Bryden C (2005) Dancing with Dementia: My Story of Living Positively with Dementia Jessica Kingsley Press: London

Davis R (1989) My Journey Into Alzheimer’s Disease Tyndale House: London

McGowin DF (1993) Living in the Labyrinth Mainsail: Cambridge

Books - Biographies:

Stokes G (2008) And Still The Music Plays: Stories of People with Dementia Hawker: London

Journal:

Sterin GJ (2002) Essay on a word: a lived experience of Alzheimer’s disease Dementia 1(1): 7-10

Online:

Pratchett T (2008) Forward to Out of the Shadows (AS 2008) report [online:]http://www.alzheimers.org.uk/downloads/Out_of_the_Shadows.pdf


UNIT SUMMARY

This Unit has explored some of the experiences of having dementia. It has considered the importance of diagnosis, and the mixed feelings that arise as a result of being diagnosed. It has also considered some of the coping strategies employed by people with dementia as they seek both to come to terms with the illness, and live their lives in the light of the illness. Finally, it has explored the lived experience as a “temporal” trajectory from pre-diagnosis through to demise and death. During this process, it is important to foster a sense of hope and acceptance of the illness, without engaging in practices that stigmatise and disempower the person with dementia. This can only be achieved by an acknowledgement of the individual’s own lived experience, and the values and beliefs we hold about dementia itself. This will be our consideration in Unit Two.

FURTHER READING

Alzheimer’s Society (2008) Out of the Shadows [online:]http://www.alzheimers.org.uk/downloads/Out_of_the_Shadows.pdf (accessed: 01-01-09)

Phinney A (2008) Toward understanding subjective experiences of dementia In: Downs M and Bowers B (eds) Excellence in Dementia Care: Research into practice Open University Press: Maidenhead


REFERENCES

Alzheimer’s Society (2008) Out of the Shadows [online:]http://www.alzheimers.org.uk/downloads/Out_of_the_Shadows.pdf (accessed: 01-01-09)

Ballard C (2000) Anxiety, depression and psychosis in vascular dementia: prevalence and associations Journal of Affective Disorders 59(2): 97-106

Bartlett R (2007) “You can get in alright, but you can’t get out!” Social exclusion and men with dementia in nursing homes: insights from a single case study Quality in Ageing 8(2): 16-26

Benbow SM and Quinn A (1990) Dementia, grief and dying Palliative Medicine 4(2): 87-92


Browne CJ and Shlosberg E (2005) Attachment behaviours and parent fixation in people with dementia: the role of cognitive functioning and pre-morbid attachment style Aging and Mental Health 9(2): 153-161

Bryden C (2005) Dancing with Dementia: My Story of Living Positively with Dementia Jessica Kingsley Press: London

Clare L (2002) We’ll fight it as long as we can: coping with the onset of Alzheimer’s disease Aging and Mental Health 6(2): 139–148

Davis R (1989) My Journey Into Alzheimer’s Disease Tyndale House: London

Fagerberg I and Jonhagen ME (2004) Temporary confusion: a fearful experience Journal of Psychiatric and Mental Health Nursing 9(3):339-346

Folstein MF, Folstein SE and McHugh PR (1975) Mini-mental state: a practical method for grading the cognitive state of patients for the clinician Journal of Psychiatric Research 12(3): 189-198

Graham N, Lindesay J, Katona C, Manoel Bertolote J, Camus V, Copeland J, De Mendonca Lima A, Gaillard M, Nargeot M, Gray J, Jacobsson L, Kingma M, Kuhne N, O’Loughlin A, Rutz W, Saraceono B, Taintor Z and Wancata J (2003) Reducing stigma and discrimination against older people with mental disorders: A technical consensus statement International Journal of Geriatric Psychiatry 18(8): 670–678

Goldsmith M (2004) In A Strange Land: people with dementia and the local church 4M Publications: Southwell

Hart D (2002) When language weakens Psychiatric Bulletin 26(4):137-138

Hope T (1994) Personal identity and psychiatric illness In: A Phillips Griffiths (ed) Philosophy, Psychology and Psychiatry Cambridge University Press: Cambridge

Keady J and Nolan M (1994) Younger onset dementia: developing a longitudinal model as a basis for a research agenda and as a guide to interventions with sufferers and carers Journal of Advanced Nursing 19:659–69

Kelly G (1955) The Psychology of Personal Constructs (2 vols). Norton: New York

Killick J (1994) There’s so much to hear, when you listen to individual voices Journal of Dementia Care 2(5):12-14


Kolb D (1985) Learning Styles Inventory (Revised Edition) Hay Group: Boston, MA

Kubler-Ross E (1969) On Death and Dying Tavistock: London

Lawrence RM and Head JH (2005) A final capsule for patients with dementia Journal of the Royal Society of Medicine 98: 116-118

Lecouturier J, Bamford C, Hughes JC, Francis JJ, Foy R, Johnston M and Eccles MP (2008) Appropriate disclosure of a diagnosis of dementia: identifying the key behaviours of “best practice” BMC Health Services Research 8(95) [online:]http://www.biomedcentral.com/content/pdf/1472-6963-8-95.pdf (accessed: 12-01-09)

McGowin DF (1993) Living in the Labyrinth Mainsail: Cambridge

Miesen B (1993) Alzheimer’s disease, the phenomenon of parent fixation and Bowlby’s attachment theory International Journal of Geriatric Psychiatry 8: 147-153

Parkes CM (1996) Bereavement: Studies of Grief in Adult Life (3rd Edn) Penguin: Harmondsworth

Phinney A (1998) Living with dementia from the patient’s perspective Journal of Gerontological Nursing 24(6): 8–15

Radley A (1988) The social form of feeling British Journal of Social Psychology 27(1): 5-18

Reisberg B (1988) Functional Assessment Staging (FAST) Psychopharmacological Bulletin 24(4): 653-659

Rowe D (1983) Depression: the way out of your prison Routledge: London

Sinason V (1992) Mental handicap and the human condition Free Association: London

Solomon K and Szwarbo P (1992) Psychotherapy for patients with dementia. In: JE Morley, R Coe, R Strong, and G Grossberg (eds) Memory Function and Aging-Related Disorders Springer: New York

Sorensen S (2009) Stigma of dementia higher in UK than in US [online:]http://alzheimers.org.uk/site/scripts/news_article.php?newsID=404 (accessed: 23-02-09)

Steeman E, de Casterlé BD, Godderis J and Grypdonck M (2006) Living with early-stage dementia: a review of qualitative studies Journal of Advanced Nursing 54(6): 722-738


http://alzheimers.org.uk/site/scripts/news_article.php?newsID=404

Sterin GJ (2002) Essay on a word: a lived experience of Alzheimer’s disease Dementia 1(1): 7-10


Thomas A (2008) Clinical aspects of dementia: Alzheimer’s disease In: R Jacoby, C Oppenheimer, T Dening and A Thomas (eds) Oxford Textbook of Psychiatry Oxford University Press: Oxford

TUTOR TALK: Congratulations on coming to the end of this unit. Move on and answer the questions then return your completed test paper to the College for marking. Good luck and well done.

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