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UNIT 308:

End of Life and Dementia Care

Learner’s Workbook

Learning Activities

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Acknowledgements

Skills for Care is pleased to acknowledge the work of St Luke’s Hospice Plymouth and Venus Training & Consultancy in researching and writing these learning materials. In the course of developing these materials they have drawn on the resources available through the National End of Life Care Programme, Social Care Institute for Excellence, Help the Hospices, e-ELCA and others. Skills for Care wishes also to thank all those individuals and organizations’ that supported the external consultation. All sources have been acknowledged and references have been cited at the point of contribution. This unit of learning has been developed and written by Jane Mason MSc; BSc (hons); RNT; RN; DN St.Lukes Hospice Plymouth Edited by Jane Kellas Director Venus Training and Consultancy Limited Katherine Kelleher Director Aspira Consultancy Externally reviewed by Geraldine Clay. MSc, BA (Hons), RGN, RHV, RNT.

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Table of Contents

Section Content Page Table of the learning outcomes and assessment criteria

4

Section 1

Introduction to the unit:

Introduction to the subject and what the activities are generally about

What types of evidence are acceptable for each learning criteria

6

Section 2

Activity 1 – Who am I? Professional Discussion (meets learning outcomes 1.1, 1.2, 1.4, 3.2, 3.4)

15

Activity 2 – Dementia Detectives (meets learning outcomes 1.3, 2.1, 2.2, 2.3, 3.4, 3.5)

44

Activity 3 – Who cares for the carers? (meets learning outcomes 1.2, 3.1, 3.3, 3.5)

65

Glossary of terms 81

Continuation sheets (for photocopying) 82

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Table 1: Learning Outcomes and Assessment Methods

EOL 308: End of Life and Dementia Care

Unit reference Unit level 3 Credit value 2 Activities/Study 20

Unit aim The purpose of this unit is to assess the learner’s knowledge and understanding of dementia.

Learning outcomes The learner will:

Assessment criteria The learner can

Own evidence log (optional)

Evidence Type

Page No

Type of evidence presented

1. Understand considerations for individuals with dementia at end of life

1.1 Outline in what ways dementia can be a terminal illness

Knowledge

1.2 Compare the differences in end of life experience of an individual with dementia to that of an individual without dementia

Knowledge

1.3 Explain why it is important that end of life care for an individual with dementia must be person centered

Knowledge

1.4 Explain why individuals with dementia need to be supported to make Advance Care Plans as early as possible

Knowledge

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Table 1 continued

Learning outcomes The learner will:

Assessment criteria The learner can

Own evidence log (optional)

Evidence Type

Page No

Type of evidence presented

2. Understand how to support individuals with dementia affected by pain and distress at end of life

2.1 Explain why pain in individuals with dementia is often poorly recognised and undertreated

Knowledge

2.2 Describe ways to assess whether an individual with dementia is in pain or distress

Knowledge

2.3 Describe ways to support individuals with dementia to manage their pain and distress at end of life using: - Medication - Non medication techniques

Knowledge

3. Understand how to support carers of individuals with dementia at end of life

3.1 Explain why carers may experience guilt and stress at end of life of an individual with dementia

Knowledge

3.2 Describe ways of supporting carers to understand how end of life process may differ for individuals with dementia

Knowledge

3.3 Describe how others caring for individuals with dementia may experience loss and grief

Knowledge

3.4 Describe ways of supporting carers when difficult decisions need to be made for individuals with dementia at end of life

Knowledge

3.5 Give examples of how to support carers and others to support an individual with dementia in the final stages of their life

Knowledge

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Section 1: Introduction to EOL Unit 308

General Introduction It is recognised that those individuals with frailty and dementia often do not receive good EOL care. The lack of good EOL care is often due to the fact people with the later stages of dementia lack the mental ability to make decisions for themselves and have to rely on others to make decisions for them. This unit will help you to understand why dementia is viewed as a life limiting condition and the importance of Advance Care Planning early on in the disease pathway. The need for a personalised approach to care is explored. The need to provide extra support to family and friends is also discussed. Family and friends often go through a double bereavement as they lose the person they knew even before death occurs. Essentially the unit will help you understand how you care for someone with dementia at EOL to ensure these individuals have equal access to good EOL.

Learning Support Due to the sensitive nature of End of Life (EOL) care, sometimes learners can become upset whilst completing the learning activity. For example you may be asked to consider your thoughts about your own death, or watch video clips that include the views of people who are actually dying. At your introductory session your tutor/assessor will ask you to complete a support agreement, which will identify what you should do if you should become upset whilst undertaking any of the following learning activities.

Lone study – The tutor/assessor will ask you to identify support networks (these could be friends, family, colleagues) if you should become upset.

One to one – The tutor/assessor will ask how you would like to be supported by your tutor/assessor should you become upset.

Work based learning- The tutor/assessor will ask you to identify a mentor/or supervisor to whom you could go if you became upset at work

Classroom based learning - The tutor/assessor will ask how you would like to be supported should you become upset during classroom sessions. The tutor/assessor will not be able to leave the rest of the class, so you may wish to nominate a classroom buddy who could leave the classroom with you or identify a quiet place where you can go to be alone and have a cup of tea. This will be your decision and based on the facilities available.

Providing good EOL care can be one of the most rewarding caring experiences you can have. It is a privilege to know that you have cared for someone as they have taken their last breath in the world and that you have been part of their end of life journey. It is often a comfort to know that you have helped someone meet their EOL wishes and they have had a comfortable, dignified death. How you care for someone at end of life can remain with relatives and loved ones for a long time and you only have one chance to get it right. This is a big responsibility and so it is really important

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that you take the learning activities seriously and that you also ensure that you learn at your own pace, to fully reflect and absorb the new EOL knowledge and skills you will be developing throughout this unit.

Learning Activities As everybody has different ways of learning new information, this workbook contains a range of learning activities, which will assist you in meeting the learning outcomes for the unit. Table 2 shows you the type of activities you may be asked to complete.

Table 2: Type of learning activities and symbols

Activity Symbol Explanation

This symbol means you will need to access the internet *

This symbol means you will be reading something

This symbol means you will be asked to talk about something with friends, colleagues, your tutor or assessor

This symbol means you will be asked to think about something and you may be required to write your thoughts down

This symbol means you will be asked to watch a clip from a movie, TV programme or from the Internet eg YouTube film clip *

This symbol means you will be asked to write something in a workbook or a worksheet or even provide examples of your work with a service user eg a plan you have written

This symbol means you will be asked to research some information. This might be through the internet, books and articles or from talking to people you know

This symbol means your assessor will plan to conduct an observation of your practice or will examine a work product

* Although every effort has been made to ensure video clips are appropriate, as they are often freely available to all, we cannot be held accountable for any inappropriate comments made about the clips. If you should see something offensive please following the offensive reporting guidelines of the web site concerned.

For each activity you will see a clock symbol, which will provide you with a guide to how long the activity could take you. Remember this is a guide and the activity may not take as long as it says!

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Each activity will signpost you to a range of resources to support your learning and where appropriate learning materials will be provided e.g. an information leaflet or a section of a website for you to read.

As you complete the activities in each section, it will be important for you to log your evidence in the relevant evidence log that your awarding body has provided for you. You can see which learning outcomes each activity covers by the table at the top - below is an example; the learning outcome shaded in green is the one you have covered when you successfully complete the activity. Your tutor/assessor will support you to complete the activity. If you don't succeed at first, they will give you further support to get it right!

1.1 1.2 1.3 1.4 1.5 1.6 1.7

2.1 2.2 2.3

3.1 3.2 3.3

4.1 4.2 4.3 4.4 4.5 4.6

Table 1 (page 4) shows you what learning outcomes you will have to achieve to pass this unit and what the assessment criteria will be. The table also identifies whether it is a skill or knowledge competency. The table also provides you with an optional ‘own evidence log’. This is so you can keep your own learning log and can discuss your learning and evidence with your tutor and/or your assessor. Keeping your own learning log can be a useful tool to help you keep track of your learning and progress. At the end of each activity you will be reminded to complete the evidence log.

Each section will outline the activity and provide guidance on how to do the activity. Look for this symbol to help you with ideas and suggestions on completing the activity.

Plagiarism and Confidentiality Plagiarism relates to claiming work to be your own when it is not. All work submitted must be your own and not copied from anyone or anywhere else unless the source of the information has been clearly referenced. Confidentiality is essential in all aspects of care and that includes during your learning. You may be asked to reflect upon aspects of your role and people for whom you provide end of life care but it is very important that you do not disclose any personal information about them. You must also be very careful not to include any evidence that relates to them in your portfolio e.g. photographs or documents with their details on.

Portfolio of Evidence It is recommended you keep a folder to record all the evidence you collect for this unit. This will be your portfolio, which demonstrates your understanding on the subject and will help your tutor/assessor ensure you are meeting the learning outcomes.

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End of Life Care for All (e-ELCA) End of Life Care for All (e-ELCA) is an e-learning platform from the Department of Health and e-Learning for Healthcare (e-LfH) in partnership with the Association for Palliative Medicine of Great Britain and Ireland to support the implementation of the Department of Health's National End of Life Care Strategy (July 2008). The e-learning platform is aimed at health and social care staff working in end of life care. The e-learning enhances the training and education of these staff, increasing their confidence and competence to ensure well informed, high quality care is delivered to people at the end of their life. There are over 150 highly interactive sessions of e learning within e-ELCA. These are arranged in 4 core modules:

Advance Care Planning

Assessment

Communications Skills

Symptom Management, comfort and wellbeing Also, there are 3 additional modules in social care, bereavement and spirituality. All of these sessions are freely available to NHS staff, social care staff that work in an organisation registered with the Skills for Care National Minimum Data Set (NMDS) or staff who work in a hospice. Staff who do not meet these criteria can register at a cost of £199. There are twelve sessions which are freely available to everyone, including volunteers and clerical and administrative staff on an open access website: www.endoflifecareforall.org.uk. For further details see 'Access the e-learning'. This is an additional resource and not mandatory for this unit as it may not be freely available to every learner.

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Providing the right evidence It is important that you provide the right type of evidence for the outcome you are trying to achieve. Remember there are 2 types of evidence:

a. Competence / Skill – This is where you need to demonstrate something about your practice.

b. Knowledge – This is where you need to demonstrate that you have learned and understood some new information.

Table 3 shows you the type of evidence that is acceptable for the type of outcome.

Table 3: Suitable Evidence

Evidence methods Explanation Suitable for evidencing

Competence

Suitable for evidencing Knowledge

Direct observation of you by assessor

You will be observed by your assessor carrying out your everyday work activities in your learning environment

YES YES

Professional discussion

You will take part in a pre-planned and in-depth discussion with your assessor

YES YES

Expert Witness evidence

An expert witness, such as a qualified professional, completes a testimony of your competence in the learning environment where it would not be possible for your assessor to observe

YES YES

Work products A work product is evidence used in your work setting and produced, or contributed to, by you. For example care plans, daily diaries, assessments

YES YES

Reflective diary An on-going record of events produced by you that take place relating to your work, including evaluation and reflection

YES YES

Reflective statement A record of events, produced by you, that relate to an event that happened in your learning environment, including evaluation and reflection

YES YES

Written and pictorial information

Written answers and completed activities set by your tutor or assessor

NO YES

A scenario or case study

Written or verbal account of how you would respond to specific events set down by your tutor / assessor

NO YES

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Reflective Practice and Reflective Accounts Reflective practice is a process, which enables you to achieve a better understanding of yourself, your skills, knowledge and practice. Although most of us engage in thinking about experiences either before, during or after an event, we need to document our understanding in order to clearly identify our learning, consider the outcomes and evaluate the experience. The aim is to identify what we have learnt in order to find new or different approaches to our future practice, or to recognise when something was best practice. Learning comes from many different incidents and experiences that we have in life. We can learn much about ourselves, others, our job, our organisation, and professional practice, as well as our abilities and skills, if we consciously take the time to reflect on our learning. A popular model of reflection is Gibbs 1988 – The Reflective Cycle. This is shown in the diagram below:

In some of the activities in this workbook, you will be asked to complete reflective accounts. We recommend that you follow the model above to ensure that you include everything.

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Introduction to Dementia Care at End of Life There are currently about 800,000 people living with dementia in the U.K (Alzheimer’s Society website June 2013) and this number is expected to increase. Dementia is a progressive condition and to date there is no cure. This means that anyone who has dementia will have dementia at the end of their life. The individual may die as a result of the symptoms of severe dementia or they may die from other causes complicated by the presence of dementia. Problems with the ability to make their own decisions (capacity) and difficulties in communication as the disease progresses can result in undignified care at the End of Life and the under treatment of pain. The early signs of dementia are forgetfulness and then a decreasing ability to retain information or make decisions. This means it is important that plans for future and End of Life care are undertaken as soon as possible after diagnosis so that the individual can contribute. This module will consider how we can ensure that End of Life care for individuals with dementia is of a high quality. First we will look at the symptoms of dementia and the progressive nature of the disease. We will look at how care for someone with dementia at End of Life differs from that of an individual without that disease. The importance of making Advance Care Plans will be discussed and how to undertake this activity when an individual has dementia. Dementia is a disease that can progress over many years and it can be difficult to anticipate End of Life. We will consider the specific triggers that indicate End of Life is approaching for an individual at the end of life. Ensuring that End of Life Care is individual with dementia at End of Life can present particular challenges as the person we see may appear to be very different from the person they once were. We will look at how to ensure individual and comprehensive care plans are made. Finally the module will consider the needs of those who care for individuals with dementia both formally and informally. It will look at the grieving process and consider how this may be complicated for those who care for an individual with dementia. Information will be given about how appropriate support can be given.

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Pre-learning assessment – Rate how confident you feel about understanding and supporting individuals with dementia at End of Life. 1 being not very confident and 5 very confident If you are not sure about completing this table please discuss with your tutor/assessor. Pre- learning assessment

Confidence level

1 2 3 4 5

Understand the nature and progression of dementia

Understand the symptoms of dementia

Understand dementia as a terminal illness

Understand the importance of individualised person centred care for an individual with dementia

Understand how to ensure individuals with dementia receive good end of life care free from pain and distress

Understand how to support family, friends and others of individuals with dementia

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Section 2: Activities

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Activity 1 – Who am I? Professional Discussion ______________________________________________________ Learning outcomes and assessment criteria This activity links to the following learning outcomes and assessment criteria (page 4). Those highlighted green are the ones you will cover when you have successfully completed it.

1.1 1.2 1.3 1.4

2.1 2.2 2.3

3.1 3.2 3.3 3.4 3.5

Assessment Method: Professional Discussion Assessment Type: Knowledge

Activity 1: Who am I? Professional Discussion

Approximately 7 hours and 30 minutes

For this activity you will need to work with your tutor to book and plan a discussion. You will be required to talk about the following topics:

The symptoms of dementia

The progression of dementia

How and why dementia can be terminal

How the end of life experience differs for someone with dementia compared to someone who doesn’t have dementia

The triggers that indicate EOL is approaching for an individual with dementia

Advance care planning for someone with dementia

The learning you will undertake before your professional discussion will include a variety of activities including answering questions relating to scenarios; being asked to think about and write down information related to the learning; watching video clips and responding to questions relating to the clip.

It is a fact that: People with dementia are:

– More likely to die in an acute hospital – Less likely to receive hospital or palliative care – Less likely to have their spiritual needs

considered when they die – Less likely to receive adequate pain control

Sampson et al (2005).

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These statements say that the EOL care given to an individual with dementia is not of the same quality as that given to individuals without dementia. That does not seem right does it? What can we do to alter that? To ensure that the EOL care provided to people with dementia is of a high quality we first need to understand the effects of the disease on the individual so that we can provide suitable care. Just as with any EOL care, that care needs to be individual to each person but there are special considerations in meeting the needs of individuals with dementia and their family and friends. Often we refer to individuals as suffering from ‘dementia’. However, dementia is not one single disease. Below we will discuss the common types. Before we do so it will help to be able to picture what having dementia means. Think about an individual you have cared for, or a person you have known who has dementia. Do not worry if you have not cared for many people living with dementia, as all these aspects will be discussed as you work through the unit. Now write a few sentences about how you saw that person. Include what led you to know they were suffering from dementia; how did the person look; how were their communication skills and decision making affected. Were there any particular physical problems such as eating, drinking, going to the toilet?

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There are 800,000 people in the UK with dementia (www.alzheimers.org.uk accessed April 2013) and this number is expected to continue to rise. The term dementia refers to a set of symptoms such as memory loss, changes in mood and behaviour, loss of ability to reason and to care for yourself independently. You are not expected to know everything about the different causes of dementia but it is worth knowing there are several types so that you can understand the EOL care an individual with dementia will need even if the name of their condition is different. Common types of dementia: Alzheimer’s – Most common cause. Parts of the brain are damaged. Vascular dementia –Caused by problems with the blood supply to the brain Dementia with Lewy bodies – Protein deposits form in the nerve cells. Fronto-temporal dementia – Damage to certain parts of the brain (frontal and temporal). There are changes in behaviour, emotional responses and language skills.

Some facts about dementia

Although the medical names may vary all types of dementia are progressive. That is the symptoms become worse over time. This is because the structure and chemistry of the brain become more damaged over time. The person’s ability to remember, understand, communicate, reason and make decisions gradually declines.

How quickly dementia progresses varies from individual to individual. Everyone is unique and experiences the symptoms of dementia in different ways.

Dementia is mainly (though not only) a condition seen in older people (over 65) and the chances of developing dementia increase with age (www.alzheimers.org.uk)

It is also important to remember that not all older people will develop dementia. Many people live into their nineties and beyond without any symptoms of dementia.

Dementia can also occur in a younger age group and there

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Watch the video clip http://www.youtube.com/watch?v=6q-H1-XwCZA ‘What is dementia’ to remind yourself of what we have discussed so far. Make some notes here on what else you learn from watching the video.

Go to www.scie.org.uk/publications/elearning/dementia and complete Section one ‘Introduction’ and Section three ‘Fact or Fiction’. Make some notes about what you learn and answer the questions asked in the e-learning. This will help when you come to the discussion with your tutor.

are at present 17,000 people in the UK under 65 with dementia (www.alzheimers.org.uk)

Dementia is a progressive disease that at the present time cannot be cured. Research is on-going and there are a few drugs that can slow the progression, especially in the early stages

Sometimes individuals may be confused for other reasons. This may include acute illnesses such as an infection (especially a urinary tract infection), depression or a reaction to medication. In these situations the confusion will end as the condition is treated. The symptoms of confusion may appear like those caused by dementia but the confusion is short lived.

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While the first signs of dementia may be difficulty to identify, as the disease progresses the individual experiences more difficulties. Eventually the symptoms become marked in advanced dementia. Main symptoms of advanced dementia The main symptoms of advanced dementia are listed below:

Memory loss Memory loss is likely to be very severe in the later stages of dementia. People may be unable to:

• Recognise those close to them or even their own reflection.

• Find their way around familiar surroundings or identify everyday objects. However, they may occasionally

experience sudden flashes of recognition. • Forget how to get dressed especially the order in which clothes are

put on.

The person may live in a time from their past, and may search for someone or something from that time. It can be helpful for those around them to use this as an opportunity to talk about the past and try to reassure the person. Even if a person has severe memory loss, they may still be able to appreciate or respond to outside stimuli such as music, scent and touch. There are four common areas in which people with memory loss often experience difficulty:

• Remembering recent events • Taking in new information

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• Remembering people • Making decisions • Separating fact from fiction

Individuals’ with dementia have increasing difficulty remembering recent events but can remember things that happened long ago. Often the memories gradually go further and further back in their lifetime and ending with memories of childhood. Some people with dementia seem to be ‘stuck’ in one particular time of their life and welcome memories that relate to that time such as childhood, working life or family life. Dementia has been described as memories unrolling backwards. Some people with dementia revert to a childlike sate –they may carry a doll, a toy or a blanket as a source of comfort just as they did when they were young. Communication Individuals with advanced dementia experience several problems that affect their communication. The person may have:

• A problem understanding what is being said and what is going on around them.

• Difficulty communicating with other people. • They may gradually lose their speech or they may repeat a few words

or cry out from time to time. The person's expression and body language may give clues about how they are feeling. Those around the person should continue talking to them as though they understand. This helps to preserve their dignity. There may still be moments when the person seems to make an appropriate response.

Mobility Many people with dementia gradually lose their ability to walk and to perform everyday tasks unaided.

• One of the first signs of this is that they shuffle or walk unsteadily. They may also seem slow or clumsy and be more likely to bump into things, drop objects or fall.

• Some people with dementia eventually become confined to a bed or chair.

Eating and drinking Most people with dementia lose weight in the later stages of the illness. The individual will:

• Need help and encouragement with eating and drinking.

• Chewing and swallowing are a problem, due to weak muscles and reflexes; the person may choke on food or develop chest infections. The GP may be able to refer the person to a speech therapist, or to a nutritional specialist for advice on a special diet

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Incontinence

• Many people lose control of their bladder in the later stages of dementia.

• Some also lose control of their bowels

Puzzling behaviour An individual with dementia may show all or some of the following behaviours

• Become more agitated

• React aggressively if they feel threatened or cannot understand what is going on around them

• May rock backwards and forwards, repetitive movements or keep

calling out the same sound or word.

• Experience hallucinations, in which they see, smell, hear, taste or feel things that are not really there.

• Develop delusions, in which they experience distorted ideas about

what is happening.

• Become restless because they need more physical activity.

• Have excessive hand activity, constantly wrings their hands, pulls at their clothes, taps or fidget

• Have periods of physical inactivity during which the person remains still, with their eyes open but not focused on anything

The life expectancy of a person with dementia is unpredictable, and the disease can progress for up to ten years. Although dementia is a life-shortening illness, another condition or illness (such as bronchopneumonia) often triggers death and be given as cause of death on the death certificate. The rate at which the disease progresses is different for each person. Some people may appear to deteriorate quickly and then the progress slows again. This uncertainty and the fact the individual finds it harder and harder to communicate how they are feeling means it can be difficult to decide when EOL is approaching. The person may also have other health issues that will affect when EOL is reached.

Dementia as a terminal disease Dementia is most often thought of as a memory disorder. Recently there has been recognition in the field that it is in fact a life shortening disease that results in death. Many individuals with dementia also have other conditions and death may

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be a result of these. For others death is from complications of the disease such as increased chest infections due to general frailty or decreased mobility. Some individuals with dementia are thought, by experts working with dementia patients, to die because the brain that controls all the other functions of the body fails. If dementia is not recognised as a life limiting disease there is a danger that there is aggressive treatment in the late stages of the disease causing distress to the individual. It can be particularly hard for relatives to acknowledge that an individual with dementia is reaching the end of life, especially as the individual is likely to have lived for a long time with the disease. The booklet below was written for relatives and carers but contains useful information for social care workers too. http://www.alzscot.org/downloads/lettinggo.pdf Triggers to indicate End of Life End of Life is considered as the last twelve months of an individual’s life. No one can say exactly how long someone will live but there are indicators or triggers that indicate that End of Life is approaching. The Gold Standards Framework (2005) www.goldstandardsframework.nhs.uk The Gold Standards Framework (2005) gives three triggers that indicate a person is reaching End of Life:

Surprise question ‘would you be surprised if this person were to die in the next 6-12 months’

General indicators of decline- deterioration –physical or psychological; increasing need; increasing hospital admissions; loss of weight/ appetite; choice to have no further active treatment (eg chemotherapy)

Specific indicators for EOL patient groups (cancer; organ failure; elderly frail/ dementia)

As we have seen above dementia may last for many years and it can be hard to identify when EOL is approaching. The Gold Standards framework gives specific triggers to help social care workers and health professionals recognise when a person with dementia is approaching the last twelve months of life. EOL triggers for individuals with dementia.

• Unable to walk without assistance, and • Urinary and faecal incontinence, and

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• No consistently meaningful verbal communication, and • Unable to dress without assistance • Barthel score < 3 (this will be discussed below) • Reduced ability to perform activities of daily living • Plus any one of the following:

10% weight loss in previous six months without other causes, repeated Pyelonephritis or urinary tract infections, changes in blood chemistry (Serum albumin 25 g/l), severe pressure sores eg stage III / IV, recurrent fevers, reduced oral intake / weight loss, aspiration pneumonia (due to swallowing difficulties).

As the disease progresses it becomes more difficult for the individual to make decisions and for the carers to know what their wishes and needs are. An individual with dementia is likely to be more dependent on others for their care for a longer period at the End of Life. Consider the scenarios below and answer the questions that follow.

Consider the following scenario: Rose is a 42-year-old lady with breast cancer. She has secondary tumours in her liver and lungs. She originally had surgery to remove a lump four years ago. She has had radiotherapy and three courses of chemotherapy. Rose has recently been told that there is no further treatment that will help her. She lives at home with her husband and two young children. The Community Specialist Palliative Care Nurse knows the family well and has visited monthly for sometime. Rose has had some respite care in the local hospice and has always said that is where she would like to be cared at the end of her life as she would not want to upset her family. Now that she knows her life is to be much shorter than she had hoped for she tells the nurse that she has changed her mind and after talking to her husband wishes to be cared for at home. The nurse is able to support her decision and arranges for the district nurse to start to visit regularly. Rose says she is worried she will be in pain or become more breathless and that it will be difficult for this to be treated if she remains at home. The nurse arranges for Rose to discuss this and any other concerns about future treatment with the GP The GP arranges for some medication to be kept in Rose’s home that the district nurse can give if Rose has pain or if she is distressed. Rose has always enjoyed company and is a skilled knitter. Arrangements are made for Rose to attend the local day unit so she can meet others and continue the crafts she enjoys. Rose’s condition continues to deteriorate and extra care is provided at home. She is no longer able to swallow medication but this is being given via

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a special pump called a syringe driver. She has no pain and is not agitated. Rose dies one night six weeks later with a Marie Curie nurse present and her husband with her. The children sleep on in the next room. Roseanne is 74. She was a schoolteacher for many years. She was always fashionably dressed and she was very proud of her house and had always said there was no place like home. She loved her garden and going walking on the moors near where she lived. She has had Alzheimer’s disease for 8 years. She has had arthritis for 12 years. She was cared for at home by her husband but he had a heart attack three years ago. Reluctantly he agreed to Roseanne going into residential care as he could no longer care for her at home. The only home that had a vacancy and could manage Rosanne’s care was some distance from where they lived. He finds the journey difficult, as he has had to give up driving. They have a daughter who lives some distance away and who used to visit regularly but has not done so for sometime as her mother no longer recognises her, which the daughter finds distressing. It has been agreed that Roseanne is entering the final stages of her disease as she has had repeated hospital admissions for chest infections over the last few months. The GP has visited and instructed the social care staff to ‘just keep her comfortable’ but no medication is prescribed. Roseanne can no longer communicate how she is feeling. One night she becomes breathless and very restless and agitated. The out of hours GP, who does not know Roseanne, is called and instructs that Roseanne should be readmitted to hospital. The social work carers feel Roseanne would rather be in familiar surroundings but think that if she needs treatment she will need to go to hospital as the doctor has said. Her husband and daughter are informed and, thinking this is like previous occasions, arrange to visit the hospital together the next afternoon. The next morning Roseanne dies alone on the hospital ward. Questions These are two very different descriptions of End of Life Care. Make some notes and answer the following:

Q. Pick out three aspects of Rose’s death that make you think it was

peaceful and what is often described as a good death:

1.

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2.

3.

Q. Which of these factors were not present for Roseanne?

Q. Why do you think pain and other symptoms were managed for Rose but

not for Roseanne?

Q. Why do you think Rose’s wishes were listened to but not Rosanne’s?

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Q. How could things have been different for Roseanne?

Q. Name three changes to her care that could have improved Roseanne’s

End of Life experience.

1.

2.

3.

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Importance of Advance Care Planning Making plans for the EOL is important for anyone as it ensures that an individual’s wishes and preferences for care are known. An Advance Care Plan means that care can be tailored to an individual when they can no longer make their wishes known. During the later stages of dementia people become increasingly frail, becoming totally dependent on others and lose the ability to make their own

decisions and have difficulty communicating their thoughts and wishes. Knowing what to expect can help everyone to prepare. It is important that when someone is diagnosed with dementia that planning for the future and writing down how and where that individual wants to be cared for at the EOL starts as soon as possible. This means that the individual is able to let other people know what is important to them and what their wishes are while they are still able to make decisions. Knowing what those wishes are makes it easier for both family and carers as they know they are acting in the way the person would wish. Knowing what an individual wanted and was important to them also helps to avoid family disagreements about what that individual would have wanted. Taking a proactive approach ensures that it is more likely the right thing happens at the right time for the individual, their family and the care team in the home where they live or the team supporting them at home.

Think about 4 of the most important things to you – What is important to you is a very personal thing –as you do this exercise try to be honest about what you choose. It may include people who are special, plans and hobbies or religious or cultural beliefs but there could be many other things too. Write your thoughts in the speech bubble.

End of life care for people with dementia is a key part of delivering good quality care but many people put things off until it’s too late. It is not always easy to begin conversations but speaking openly about the future can improve quality of life throughout the dementia ‘journey’; however, conversations must be started early to avoid missed opportunities. From ‘Time to Talk’ Dying Matter leaflet

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Now try to imagine what plans you would want in place for your care at End of Life. What would plans would you need to put in place to safeguard the things that are important to you if you knew that sometime in the future you may not be able to act independently, not able to tell others about your decisions or be around to organise how others are cared for. This will help you to understand how the individuals you are helping to make plans for are thinking.

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Now read the leaflet “Time to Talk” www.dyingmatters.org click on resources in the top panel and then on ‘leaflets’ Write down 10 top tips for why it is important to have Advance Care Plan conversations:

1 2 3 4 5 6 7 8 9 10

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Write down 5 things you want to remember to help you carry out an Advance Care Plan conversation and how you would record the information.

1 2 3 4 5

Remember that, although plans need to be made as early as possible after diagnosis, the diagnosis of dementia is a difficult time for individuals and their families as they come to terms with what the future holds. They may experience a time of feeling shocked and numb and may not be able to make future plans immediately. Alternatively having a diagnosis may give a feeling of relief as the individual and their family may have recognised that things have been difficult for a while. People may be keen to make plans so they can be sure their wishes will be met or their family cared for. Some individuals may not wish to talk about the future and this must be respected. Remember that, although, plans need to be made as early as possible after diagnosis, someone with dementia will get tired easily and it is better to have several shorter discussions. Remember that Advance Care Plans should be reviewed regularly and that plans may change over time. Individuals may change their plans at any time while they have the mental capacity to do so. The plans will only become effective when the individual has lost mental capacity. Watch the following video

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http://www.advancecareplanning.ca/ This is a video clip about advance care planning in general but the lady talking to her son clearly has dementia. Note down the differences between that lady and the gentleman who does not have dementia.

Now think about the person you wrote about at the start of this section. The present mental capacity of that person may be different depending on where you work and the individual circumstances. If you work in a Care Home setting the person may be in an advanced stage of their disease. If the person is in the community they may still have advanced disease but be cared for by family members in their own home. Some of you will be thinking of someone who has dementia but is still able to live fairly independently in their own home with the support of you and others. What is important is that the individual is given the opportunity to be involved in the Advance Care Plan. Remember that although they may not have the capacity to make all their own decisions they may still be able to make some decisions. The sooner the conversations are started the more involvement they will be able to have. Look back at the factors you identified about Advance Care Plans and how they are recorded. Then make some notes about the following questions. Does the person you are thinking about have an Advance Care Plan?

If so what is your role now?

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If not what is your role now?

How would you open a conversation about Advance Care Plans?

An Advance Care Plan should include the individual’s general wishes regarding their future care Preferred Priorities of Care: This is about what is important to the individual and their hopes and wishes for their future care. It is not legally binding but will inform any decisions that are made in the individuals best interests (see below) if they lack the capacity to make their own decisions.

Establishes the individual’s wishes regarding their current and future care

Enables the individual to be treated in the setting of their choice as far as is possible eg to remain at home rather than being admitted to hospital

Acts as a trigger for appropriate referral to other services eg cultural or religious advisors

Enables a proactive approach to planning future care and ensuring that everyone involved in providing that care is aware of the individual’s wishes and preferences.

Look at the following for more information.

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www.endoflifecareforadults.nhs.uk/tools/core-tools/preferredprioritiesforcare

www.dementiapartnerships.org.uk and click on End of Life from the menu across the top.

An Advance Care Plan may also include specific decisions about what treatments an individual does not want at the EOL. An Advance Decision to Refuse Treatment:

Can only be made when the individual has mental capacity and is only a live document when capacity has been lost.

It consists of legally binding statements refusing treatment in specific circumstances

The plan must show that the individual anticipated their current medical condition and take into account any other medical conditions

It should take into account their current home and family circumstances

Advance Decisions to Refuse Treatment should be reviewed and updated to ensure the individual still wants to make these decisions (as long as the individual has capacity to do so).

The GP needs to know about this document and should have a copy. An individual making an Advance Decision to Refuse Treatment

Can only refuse treatments in specific circumstances, which can include resuscitation

Cannot request specific medical treatment, insist on treatment which is futile or treatment that will hasten death

Cannot force healthcare professionals to administer treatment against their opinion of what is in the individual’s best interests

Cannot stop basic care such as nutrition and hydration by mouth or basic cleanliness being offered although a person with capacity can refuse these at the time

Cannot ask healthcare or social care professionals to end or intentionally shorten the individual’s life.

From www.adrt.nhs.uk Occasionally someone may ask you to help him or her end their life. It is not legal in this country for anyone to help another to end their life. If you want further information then follow the link below.

Euthanasia and assisted suicide

http://www.nhs.uk/conditions/Euthanasiaandassistedsuicide/Pages/Introduction.aspx

It is important to know that:

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If the Advance Decision is to refuse potentially life sustaining treatment (such as clinically assisted nutrition and hydration, ventilation or attempted cardio- pulmonary resuscitation) it must be written, signed, witnessed and include a phrase clearly stating that the decision is to apply “even if life is at risk “ www.adrt.nhs.uk

Another decision the individual may make while they have the mental capacity to do so is to appoint someone as a Power of Attorney. This is a person who will be able to make decisions on their behalf. This is known as a Lasting Power of Attorney and can relate just to financial affairs or to welfare issues. An individual may appoint someone to make decisions about both these areas but each element will have to be registered separately. Look at www.gov.uk/power-of-attorney/overview. for more information. You may also care for individuals who have an Enduring Power of Attorney. This was an older form of appointing someone to look after your affairs. No new Enduring Power of Attorney can be made but those that were made are still valid. So far this all seems straightforward with individuals making decisions for themselves but you will note these decisions can only be made if the individual has the mental capacity to do so. As we have already seen dementia means an individual loses the ability to understand and make their own decisions. It is important to understand what happens where this is the case and what the role of the social care worker would be. The most important thing to remember is that any decisions made about an individual’s care where they do not have mental capacity to make their own decisions must be in that person’s Best Interests How decisions are made in someone’s best interests is governed by the Mental Capacity Act (2005) Mental Capacity and End of Life Discussions: Remember the law states that;

“ A Person must be assumed to have capacity unless it is established that he lacks capacity”

“ A person lacks capacity in relation to a matter if, at the material time, he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.” Mental Capacity Act (2005) A person is unable to make a decision for themselves if they are

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unable: A) To understand the information relevant to the decision B) To retain that information C) To use or weigh that information as part of the process of making

the decision or D) To communicate their decision (ie talking, using sign language, or

any other means) An inability to satisfy any one of theses four conditions would render the person incapable. (Mental Capacity Act 2005)

It is important that anyone involved in helping individuals to make future plans is aware of the law and the importance of being sure that the individual has the capacity to make decisions. This can seem daunting but remember you are not being asked to make these decisions on your own. You are part of a team and others, including the GP will be involved in deciding if the person has the mental capacity to make important decisions for themselves.

Look for any tools that are used in your work area to help you decide if a person has mental capacity. Make a record here of what those tools are here.

If you cannot find any tools then search for some that may be of use. The following links will help you get started but here may be others that you find. Be careful that they are from this country as other countries may have different rules. http://www.scie.org.uk/publications/mca/assessing.asp

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http://www.worcestershire.gov.uk/cms/social-care-and-health/professionals-information/mental-capacity-act-tools.aspx http://www.northyorks.gov.uk/index.aspx?articleid=15260 Find out what you should do in your workplace if you think someone no longer has capacity to make his or her own decisions and record it below.

If the individual is found to lack the capacity to make their own decisions then decision making will involve family, friends, social care staff, medical professionals and anyone else who knows the person well. If an individual has no family or friends to speak on their behalf then an independent advocate (IMCA) will need to be involved. Further information about the role of advocates can be found by following the links below: http://www.mind.org.uk/mental_health_a-z/8040_advocacy_in_mental_health http://dan.advocacyplus.org.uk/pages/supporting-people-with-dementia.html

Checklist for making Best Interest Decision making

Encourage participation Help the individual to participate in any way they are able to but avoid causing distress if they are unable to understand. Make sure everyone’s opinion is heard. It can be hard for some family members to voice their opinions

when there are health and social care professionals present

Identify all relevant circumstances

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What would the individual take into consideration if they were able to make the decision for themselves

Find out the person’s views

Past and present wishes and views, feelings, beliefs, values or any other factors. Family and those who have known the person best are often able to provide this sort of information.

Avoid discrimination

Do not make assumptions based on a person’s age, appearance, condition or behaviour.

Assess whether the person may regain capacity

If so can the decision wait, why does it have to be made now? Even in people with dementia who will not regain full capacity they may have times when they are more lucid and can make their wishes known. It is important when this happens to check out those decisions over time.

If the decision concerns Life Sustaining Treatment

Not to be motivated to bring about a person’s death or make assumptions about their quality of life

Consult others

Consult anyone previously named by individual as someone to be consulted around this decision, anyone engaged in caring for the person, close relatives, friends or others who take an interest in the person’s welfare, any Attorney appointed under a Lasting Power of Attorney or Enduring Power of Attorney, health and social care professionals involved or an IMCA if appropriate.

Avoid restricting the Persons Rights

What is the least restrictive option? Adapted from Brown, Barber and Martin (2010). The Mental Capacity Act –A Guide for Practice (2nd edition) Learning Matters Exeter.

Now consider the following scenarios and answer the questions below: Mr. C is a widower who lives with his daughter. He has recently been diagnosed with dementia though at present he is only mildly forgetful and makes a lot of his own decisions. You are visiting Mr. C and his daughter in your role as a social care worker. One day Mr. C appears more anxious than usual. When you ask if anything is troubling him he says that he has recently read more about his condition and is worried about what the future holds for

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him and his daughter.

1. What information do you think would be helpful to Mr. C and his daughter?

2. How could you support Mr. C at this time?

3. Who else might you advise them to talk to?

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4. What could you suggest Mr. C thought about in his future planning?

5. How could future plans be recorded?

6. What if Mr. C wanted to change his plans in the future?

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Mrs. A has been a resident in your Care Home for 2 years. She has no known family and does not have any visitors. She was diagnosed with dementia three years ago and her condition has been deteriorating over recent weeks. She has had four admissions for chest infections over the last three months. Each time she goes into hospital she becomes more confused and appears to be less independent in walking and caring for her personal needs when she returns home. Her appetite is poor and she is having more difficulty in swallowing. You are increasingly concerned about her returning to hospital. It is quite daunting to think that you are faced with making decisions about someone’s future care. Remember you are not making these decisions alone. Any decisions made will be her Best Interests as defined by the Mental Capacity Act (2005). Other people will be involved in making the decisions and can support you in this situation. You will have a say in the decisions though and your opinion may be sought as someone who knows this lady well. Think about what your role might be in this situation by answering the following questions: 1. What evidence would you use to make a decision about whether Mrs. A

is nearing End of Life?

2. How would you make a decision about Mrs. A’s mental capacity to make

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decisions at this time?

3. What would you need to check in the records for Mrs. A and how may

this help in the decision-making?

4. If there was no relevant information in the records what would be the next step to ensure any decisions are made in her best interests? Who would be involved in making the necessary decisions? How would the decision be recorded? What would be taken into account when making these decisions?

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Watch the video Dementia and End of Life Care that summarises many of the issues discussed in this section and demonstrates how planning in advance is a way of supporting both the individual and their family at End of Life. www.scie.org.uk/publications/dementia/resources/video.asp

Further reading:

There are over 100 causes of dementia and further information can be found at www.alzheimers.org.uk and click on About Dementia then What is Dementia then Types of Dementia

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=428

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My life until the End –dying well with dementia available to download from www.alzheimers.org.uk What is dementia –Fact sheet http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=106 And http://www.alz.org/what-is-dementia.asp Gold standards prognostic indicator http://www.londonhp.nhs.uk/wp-content/uploads/2011/03/EOLC-prognostic-indicator-guide.pdf The Simplicity of Dementia (2005) Buijssen H Jessica Kingsley publications London. Leaflets from Dying matters website http://dyingmatters.org/page/dying-matters-leaflets Capacity, care planning and advance care planning in life limiting illness: A guide for Heath and Social Care staff http://www.londonhp.nhs.uk/wp-content/uploads/2011/03/EOLC-prognostic-indicator-guide.pdf What is Mental Capacity http://www.amcat.org.uk/what_is_mental_capacity/

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Completed Activity Now you have completed this activity we recommend you go back to your own evidence log on page 4 and fill in the page number and type of evidence (eg case study or reflective account) for the assessment criteria you have completed in this activity. Remember – these are highlighted green in the grid at the start of each activity.

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Activity 2: Dementia Detectives _________________________________________________________ Learning outcomes and assessment criteria This activity links to the following learning outcomes and assessment criteria (page 4). Those highlighted green are the ones you will cover when you have successfully completed it.

1.1 1.2 1.3 1.4

2.1 2.2 2.3

3.1 3.2 3.3 3.4 3.5

Assessment Method: Work Product Assessment Type: Knowledge

Activity 2: ‘Dementia Detectives’

Approximately 5 hours and 30 minutes

For this activity you will be asked to produce an individualised care plan for a person with dementia who is nearing the End of Life. The formative learning for this section will explore the difficulties of assessment when an individual is not able to clearly communicate their condition due to mental impairment.

It will suggest ways of understanding non –verbal clues

It will look at tools that are specifically designed to support assessment for individuals with dementia, in particular those relating to pain and distress

It will explore the importance of knowing and understanding what is usual for an individual so that changes can be noted and acted on appropriately

It will consider the appropriate use of medication and non-medication approaches to manage pain and distress in relation to dementia care at the EOL.

The End of Life Care Strategy (DH 2008) states that every individual should have a holistic assessment that leads to an EOL care plan that is individual to their needs. This assessment should include physical, social, cultural, environmental, spiritual and financial needs. These needs apply equally to those individuals with dementia and those who do not have dementia. The difference is that the person with advanced dementia is no longer able to easily communicate what their needs and wishes are. This presents a challenge to social care staff as we try to

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interpret these wishes. Before looking in detail at the special techniques we can use to ensure individualised and appropriate care for each individual, let’s think about how it might feel to have dementia. Below are some quotes and poems about how difficult it is to make sense of the world for a person with dementia.

www.facesofdementia.alzheimers.org.nz

My daughter visited so they say Said she took me out today

Had an ice-cream, cup of tea, Glad she can remember me! Music playing, can I dance?

Comedy on, do I laugh? Favourite colour blue or red Things go fuzzy in my head

I’m quite worn out but don’t know why Try to remember makes me cry Block it out make it go away Tomorrow is another day…. Laura Coulson www.beingyou.me -other poems may be found on this site

‘Alzheimer’s is me unwinding, losing trust in myself…and on bad days capable of playing hunt the slipper by myself and losing’

‘I’m slipping away a bit at a time and all I can do is watch it happen’ Terry Pratchett - Author and sufferer of early onset dementia.

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These poems and quotes, in different ways show the distress that individuals experience when they suffer from dementia. They struggle to make sense of the world around them and because of their difficulties in remembering and communicating struggle to be heard. One poem talks about ‘I’m still the man I used to be’ Go to this website and read the section ‘What is the experience of dementia’ http://www.health.vic.gov.au/dementia/index.htm

Feeling lost Eyes open, yet unaware, Feeling lost, vacant stare Reaching out, wanting more, Feeling lonely to the core, Memories come, memories go, Days fly by, nights go slow, Yet full of life, I’m still here, Hear my heartbeat, see my tears, I’m still here the man I used to be, I’m still here, I’m still me Norm MacNamara (2011) www.facesofdementia.alzheimers.org.nz Other poems are on this site and you might look at ‘Why not ask me?’ and ‘Remember Me’ in particular.’

‘It’s the terrific confusion of things that worries me more than anything else’ Alice in Communication and care of people with dementia (2001) John Killick and Kate Allen Open University Press Buckingham and Philadelphia

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Now make some notes here about what you have learnt and how it might apply to your caring role.

As dementia progresses and individuals become more and more physically dependent it is easy to forget that the person was not always as they are now. It is easy to concentrate on the physical issues and forget the importance of other parts of the assessment and care planning process. The next section will look at the assessment process and you will be asked to relate it to the specific difficulties of advanced dementia that we looked at in section one. The table below will give the areas to be considered as part of an assessment and the relevant areas that are highlighted by understanding what symptoms are present when a person has advanced dementia. Complete the following table by relating back to the symptoms of advanced dementia and the triggers for End of Life in a person with dementia in Activity One and your own knowledge of caring for an individual with dementia.

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An example of one area of the physical symptoms is given to help you start but there are many others for you to add

Elements of holistic assessment

Related symptoms of advanced dementia

Physical Difficulty eating and drinking Add more here

Social

Cultural

Environmental

Spiritual

Financial

Thinking about these issues will help you to complete an assessment of an individual with dementia and produce a suitable care plan for them. Before you undertake that activity we will look in more depth at the special considerations when undertaking a holistic assessment for an individual with dementia and tools that can be used to support the decisions you make. First read the following document ‘National Care Forum Promoting Quality Care through the Not-For –Profit sector’ that contains a good overview of undertaking a holistic assessment for an individual with dementia www.guidepoststrust.org.uk and select dementia then research and the paper is at the end of the page One of the biggest challenges in undertaking an assessment of a person with dementia is the loss of communication skills. Note down four aspects of dementia that make communicating with an individual with dementia difficult

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1

2

3

4 You can look back at the work you undertook for Activity One and there is also some information in the following link from the Alzheimer’s Society.

www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=130 It is also important to remember that when social work carers do not make the effort to communicate with those with dementia but instead talk to colleagues and ignore the person receiving care it has been shown that the dementia progresses more quickly.

Revise your communication skills relating to people with dementia

The following are guides about improving how we communicate with individuals with dementia. www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=130 www.nhs.uk/Conditions/dementia www.scie.org.uk/publications/briefings/briefing03

Now write down your six top tips for communicating with someone with dementia

1 2

3

4

5

6 As with making an assessment and planning care for any person, the care for a person with dementia needs to be centred on that individual.

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We talk about ‘person centred’ care as though this is a new idea and a new way of improving care. Carl Rogers (1902-1986) a psychologist was already talking about and showing the importance of putting the individual at the centre of what we do in the last century. This should not be a surprise –we all like to feel we are individuals; it is part of what makes us feel human, cared for and important so why should this be any different for those we care for.

The challenge of individualising care for an individual with dementia is that as the symptoms of dementia progress it becomes more difficult to know what that person was like before they had dementia. Some people talk about knowing the ‘essence’ of that person. The person we care for with dementia was not always the way they appear now but it can be hard to know how they used to be. Brooker (2006) talks of four essential elements of person-centred care

Valuing; Individuals; Perspectives; Social This can be adapted to relate specifically to those with dementia Valuing –value those with dementia and those who care for them Individuals –appreciate everyone has a unique history and personality Perspectives – looking at the world from that person’s perspective and listening to their voice Social – recognising that all human life is grounded in relationships and that people need to live in a social environment that supports their well-being. From www.rcn.org.uk Dementia –Commitment to the care of people with dementia in hospital settings.

Think about each of these areas in turn. Valuing A. The individual with dementia Write down 3 ways in which you demonstrate that you value the individual with dementia. This may relate to how dignity is maintained and ways in which you interact with them as an individual.

Once you have met one person with dementia, you have met that one person with dementia –you cannot generalise their care Mona Siyang –dementia nurse from

www.rcn.org.uk

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1.

2.

3.

B. The family, friends and carers of the person with dementia Write down 3 ways in which you show how you value the family, friends and carers of people with dementia

1.

2.

3.

C. Social work carers and others who provide care for an individual with dementia This may appear a strange question at first but caring for those at End of Life and with dementia can be very emotionally demanding for all concerned (including yourself). It is important that everyone involved feels supported. Write down three ways in which you can show you value the input of others by the support you offer.

1.

2.

3.

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Individuals Brooker (2006) talks about understanding that each individual has his or her own unique personality and own history. When an individual has advanced dementia that personality may appear to have changed and they are no longer able to tell us about their life history. However, that does not mean they do not still possess their own personality or that their life history isn’t important to them and those close to them. Developing a life history or collecting items for a memory box helps you to understand that person as an individual. It gives guides to conversations with that person. People with dementia cannot remember things in the short term but may still have memories of long ago. Even in severe dementia individuals may take comfort from songs or music. Hymns or chants may provide comfort even if religion has not generally been an important part of life as it can be a reminder of childhood. Think about the individual you are going to write a care plan for and write a short (about 100 words) piece about what you know about their past life and what was/is important to them.

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Perspectives This can be the most difficult area to approach as it means trying to see the world from the individual’s present view. Reading the poems above may have helped you to see how confusing the world appears to someone with dementia. Trying to understand this can make it easier to understand and support someone with dementia.

We need to try to make sense of what can seem to us, strange or even challenging behaviour. Some of the reasons people with dementia may cry out or even behave aggressively are summarised below: • Being in an unfamiliar environment and people, changes in care practice

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and the stress of hospitalisation, along with an inability to articulate this.

• An expression of unmet need, for example pain, dehydration or boredom • Feeling frustrated at being unable to understand others or make

themselves understood. • The physical effects of dementia, which may have eroded their judgment

and self-control.

Loss of inhibitions and decreased awareness of rules about appropriate behaviour learned in early childhood.

From www.alzheimers.org.uk Now read the two pages given below: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1211&pageNumber=7 http://www.communitycare.co.uk/articles/29/08/2012/118473/dementia-and-challenging-behaviour-guidance-for-home-care.htm

Think about what you have learnt about supporting individuals with dementia when they exhibit such behaviours. Write a few notes on this (no more than 250 words) to include what you may change in your practice or the environment to reduce such behaviours and support an individual you care for.

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Social Recognising that all human life is grounded in relationships and that people need to live in a social environment that supports their well-being. Go to http://www.health.vic.gov.au/dementia/index.htm and read the section Needs and abilities of people with dementia. EOL care is about the last stage of life and not just about the very last days of life. Living is about the best quality of life for as long as possible. Watch: www.myhomelife.org.uk/resources/8-key-themes/ Think about someone you care for in a care home or in their own home and identify one thing you do or could do to improve the quality of their life.

Tools to support assessment of an individual with dementia. Assessing the needs of an individual requires us to talk to the individual, observe carefully and involve others as necessary. Tools can also be useful in making an assessment as they:

1. Provide evidence of what we think is happening 2. This evidence can easily be shared with others eg medical staff

to show the present needs of an individual 3. Using a tool over a period of time can show any change in the

individual’s condition.

We have highlighted above that it can be difficult for an individual with dementia to voice their concerns and that it can be difficult to interpret what their behaviour means.

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Assessment tools have been developed specifically for use with individuals with dementia. Some these are outlined below below. You may have other tools in use in the area where you work or you may find others you would find useful –space is left for you to add these at the end of this section. Abbey Pain Score This is used to measure pain in individuals who cannot communicate eg those with dementia A copy can be found at: http://www.apsoc.org.au/PDF/Publications/4_Abbey_Pain_Scale.pdf MUST tool or other tools to monitor nutritional intake Information can be found at: http://www.bapen.org.uk/pdfs/must/must_full.pdf Barthel index This measures activities of daily living and mobility. Information can be found at: http://www.dundee.ac.uk/medther/Stroke/Scales/barthel.htm Waterlow score This measures the risk of a person developing pressure sores. The website below gives more information including the steps that might be taken to relieve pressure and a copy of the tool can be downloaded. http://www.dundee.ac.uk/medther/Stroke/Scales/barthel.htm

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Pain

“Pain is what the person says it is” But what about the person who cannot say?

Those who cannot verbalise pain often don’t receive pain relief – nurses and carers don’t look for the cues (DCDC 2007)

If we look at the common causes of pain for individuals with dementia the reason pain is such a common problem becomes clearer. Common causes of Pain in Dementia

• Osteoarthritis, • Pressure sores • Infection • Skin tears • Leg ulcer dressings • Stiffening of joints • Muscle rigidity • Constipation

Some facts about Pain in Dementia

46% of people with dementia in the last year of life have pain. • Pain is underestimated and under documented by carers • The sensory pathways in the brain can be damaged in Alzheimer’s

disease. These are the pathways that give meaning to pain. • The patient cannot tell of their experience of pain and agitation and

behavioural problems are much more likely to occur • Alzheimer’s may allow an increased pain tolerance, due to damaged

pathways but it does not decrease the pain We have looked at the difficulties of assessing the needs of an individual with advanced dementia and there are particular considerations when we look at assessing pain. Nobody else can feel your pain. Normally we would tell someone if we have pain. In people in the early stages of the disease they may still be able to make themselves understood if we take the time to let them reply and use simple and clear questions. These individuals can still describe how bad the pain is and how big a problem it is to them. This isn’t possible in people with severe dementia and the carer needs to be able to understand other, non-verbal clues. The Abbey Pain tool can help to recognise and record the observations you make

• Observational changes – Agitation, aggression, reaction to touch, moaning, change in

ability to move, hard to settle

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• Changes in body language – Facial expression- frowning, fear, tearful – Knees drawn up, foetal position, withdrawal

• Carers intuition – Probability of Pain

• Verbal expression is often lost

• In severe pain there are also physiological changes

– Pulse is more rapid, temperature can be raised, sweating,

blood pressure can rise or fall, respiratory (breathing) rate increases, guarding (holding an area of the body or stopping anyone touching an area of the body)

As in all assessment for people with dementia one of the most important factors is YOU. If you know an individual well you will be alert to changes and the probability of pain as a cause. If physical pain is the cause of the distress then the reason for the pain must be discovered and treated and /or painkillers given as needed. No individual should be left in pain. As you will have seen in the discussion above physical pain is not the only cause of distress in individuals with dementia. They may be distressed because they are afraid, frustrated because they cannot express themselves or bored. Distracting the individual or spending time with them may relieve the distress. Being in a calm atmosphere, not being hurried and treated with respect and dignity can all help to prevent distress occurring. Drugs have been widely used in the past to sedate individuals with dementia. Now we are able to understand more about dementia it is usually possible to support individuals without the need for drugs and so avoid the side effects caused by these powerful medicines.

Read the following: http://www.alzscot.org/pages/info/neurolepticdrugs.htm Read the following Scenario and answer the questions raised below You have been caring for Mr C for some time. He has severe dementia and is unable to talk very much. He is usually quite content and sits in a chair in the lounge with the other residents with the television on. Today he suddenly starts waving his arms around and making loud noises. Think about what you might do and what might be the cause of his outburst. How would you try to find out what is wrong. What would you take into consideration?

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Nutritional needs Meeting the nutritional needs of an individual with dementia can also prove difficult. A person with severe dementia may:

Not recognise foods

Forget which foods they like

Refuse or spit out food

Resist being fed

Want strange food combinations

Have difficulties swallowing It is important to monitor the input of food and fluids for an individual so that good nutrition can be achieved for as long as possible and that issues can be resolved. It is important to rule out things such as poorly fitting dentures or poor oral health Simple things may be to offer finger foods that individuals can manage themselves and is more dignified than being fed. To have flexible mealtimes and to keep a calm atmosphere. If there is difficulty with swallowing then the dietician and speech therapist will need to be involved and their advice followed. Further reading: http://www.scie.org.uk/publications/dementia/eating/why.asp http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1614&pageNumber=2

Last days of life As the last days of life approach the ability of an individual with dementia to take food and fluids diminishes. It is important that relatives, families understand that this is the case but that food and fluids will continue to be offered as long as possible. As the oral intake decreases then oral care becomes more important to keep the individual comfortable. The individual can gain comfort from the presence of familiar carers, family friends or special items around them. Some people may take comfort from music. Watch the following video: http://www.scie.org.uk/socialcaretv/video-player.asp?guid=6cddd9aa-041e-446e-b637-d47ab7b37643

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Write down any things you have learnt from watching this video or any things you want to discuss with your tutor.

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As you have worked through this section you have probably realised why it is called ‘Dementia Detectives’. As a social work carer you will constantly be attempting to get to know those with dementia and try to understand their needs and wishes. Now is the chance to show what a good detective you are as you write a care plan for an individual with dementia.

Producing a Care Plan You should now complete your care plan. The individual needs to be involved as much as possible in the assessment and care planning process. Individuals with dementia may no longer be able to make complex decisions but may still be able to make some decisions and it is important to continue to involve them in these. This may relate, for instance, to the type of food they like to eat and when they want to eat it or the choice of clothes they want to wear. It is important that this is reflected in the care plan. When a person is not able to contribute to areas of care planning we need to consider how we can gain this information. Family and friends who have known the person well can be invaluable in supplying information and it is important to involve them. Involving family and friends (who may also have been carers for the individual) can help the family and friends to retain involvement with the individual. Assessing the wishes, needs and preferences of an individual will enable you to make a care plan for that person.

As you develop an EOL care plan think about how you will ensure that the individual is able to enjoy as much as possible the life they have left. There may be things they enjoy doing and bring them comfort and joy. Consider also the last days of life –what special things do they want such as presence of family; favourite objects near them; the support of a spiritual or faith leader. You may already have a template that you use in your place of work that is specific to EOL care. If you do not then a good place to start is with a brief outline of the individual and then look at the heading from the EOL Care Strategy (2008) physical, social, cultural, environmental, spiritual and financial needs.

“Care plans will be person-centred, responsive to individual needs and support nutrition, dignity, comfort, continence, activity and palliative care.” www.scie.org.uk

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Points to remember when producing a care plan:

The document should be anonymous.

Confidentiality must be maintained.

Any document should follow local policies on record keeping Make sure you put a copy of your care plan in your portfolio and reference it at the start of this workbook.

Further Reading: SCIE information on pain experienced by people with advanced dementia www.scie.org.uk/publications/dementia/endoflife/pain.asp How would I know? What can I do? http://www.ncpc.org.uk/publication/how-would-I-know

Completed Activity Now you have completed this activity we recommend you go back to your own evidence log on page 4 and fill in the page number and type of evidence (e.g. case study or reflective account) for the assessment criteria you have completed in this activity. Remember – these are highlighted green in the grid at the start of each activity.

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Activity 3 – Who Cares for the Carers?

___________________________________________________ Learning outcomes and assessment criteria This activity links to the following learning outcomes and assessment criteria (page 4). Those highlighted green are the ones you will cover when you have successfully completed it.

1.1 1.2 1.3 1.4

2.1 2.2 2.3

3.1 3.2 3.3 3.4 3.5

Assessment Method: Reflective Account Assessment Type: Knowledge

Activity 3: Who Cares for the Carers?

Approximately 7 hours

Supporting individuals with Loss and Grief Although recognised as a universal, natural response to loss the intensity, timing and way in which people experience loss and grief is unique to each individual. Grieving is a personal and highly individual experience. How any one person grieves depends on many factors including –faith and spirituality; cultural influences; personality type; previous experiences of loss; relationship with the person they have loss. The way bereavement is experienced by those whose friend or relative has dementia can be complicated by the length of the illness (the condition often progresses over about 10 years); and the experience of living with a person whose abilities to interact have diminished over time due to their increasing lack of mental capacity. Before we consider these factors let us consider what is referred to as normal or uncomplicated grief. First let us look at who is affected when a person dies. Have a think about whom you think is affected when someone dies, think of it in relation to your place as work as well as others to consider all the people who may be affected. Write your thoughts around the cloud on the next page.

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How an individual reacts to a death is influenced by their previous experiences of loss such as miscarriage, redundancy, divorce and their experience of other people dying. It will also be influenced with the relationship they had with the person who has died. As we have seen it can be harder to retain a relationship with a person with dementia who may no longer recognise who even those closest to them. It should also be remembered that the relationship with the individual with dementia may never have been close and it may be too late to rebuild a relationship or settle old quarrels as the individual’s capacity diminishes. One of the most well known models that explain how people experience grief is that of Kubler Ross (1969 and 2005). She describes different stages of grief: Denial ‘This can’t be happening’ Anger ‘why me’, ‘it’s not fair’ Bargaining ‘I’d do anything to have them back’

Death of a person

Family

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Depression ‘I’m so sad why bother with anything’, ‘I miss my loved one -why go on’ Acceptance ‘it’s going to be ok.’ ‘I can accept what has happened ‘ It is important that although the model is written as though an individual starts at one point and moves through the stages in reality they may move back and forward between the stages or miss some stages altogether. Sometimes people become stuck at one point and this is when they may need others to help them move on. J William Worden suggests that grief and bereavement and the process of mourning can be thought of as four tasks: J William Worden: Tasks of mourning

• To accept the reality of the loss • To work through the pain of grief • To adjust to an environment in which the person who has died is missing • To emotionally relocate the person who has died and move on with life –

that is not to forget the person but to remember them in a way that does not stop them moving on with life.

Anticipatory grief If someone has a long and prolonged illness or serious memory impairment (both of which apply in the case of a person with dementia) family members and friends may begin grieving the loss of the person’s former self long before the time of death. This is sometimes referred to as anticipatory grief. Anticipating the loss, knowing how the disease will progress and knowing it will end in death can be just as painful as when the

person with the condition actually dies. Anticipatory grief can be experienced by those close to someone with dementia for many reasons:

When a person has dementia family members can experience guilt or shame for wishing it was over.

They may view their loved one as already gone as they have lost their intellectual capacity.

Some relatives and friends may not visit or visit infrequently as the individual’s condition deteriorates especially if the individual can no longer recognise their family and friends. There can be guilt afterwards that they did not visit or try to say goodbye.

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It can be hard to feel that someone who you turned to for advice and support is no longer able to give that and it may be easier to view the essence of that person is gone from your life even though the person is still alive.

Although the individual who dies has had dementia for many years as we saw in section one the death is often caused by another factor such as infection. In this case the death may be quite sudden and a surprise to relatives and friends.

People who have anticipated a loss may be surprised to find that they had not reached the stage of accepting what is happening and that they are just as upset when death occurs as if they had not anticipated the grief they would feel. The burdens of informal caring Family and friends may also experience grief as a result of the nature of the caring role they have had for the person who has died. A carer who lives at home with the person with dementia may have become very isolated from other people –feeling that they cannot leave their relative or friend alone. The person with dementia may also have avoided meeting others because they find it increasingly difficult to cope with social situations. Friends may have stopped visiting because they find it so hard to recognise or deal with the behaviour of the person with dementia. This increases the feelings of isolation for the carer. When death occurs this carer may have lost contact with family and friends and find it difficult to start these relationships again. Informal carers devote many hours to supporting and caring for a person with dementia especially as the disease progresses. Carers may have had to give up job and hobbies. When death occurs they can find they have a lot of time on their hands that they find difficult to fill. They may be grieving not only for the person who has died but for the life they have lost as a result of caring over a long period of time. Individuals with dementia cannot always continue to be cared for at home. If the carer has had to make the discussion that the individual needs admission to a formal care setting they may find they feel guilty when death has occurred that they did not continue caring for their loved one at home. When an individual is admitted to a care home the informal carer may continue to fill their time by spending long periods at the home. This allows them to still be involved in caring and to have social interactions as well. When the person with dementia dies the carer not only has to fill the time but will have lost the contacts they have made in the home. The ability of informal carers to cope with bereavement can also be made more difficult as they have health problems of their own; often made worse by the burden of caring.

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So how can you help? Below we will consider some of the ways you can support those affected by the death of someone with dementia. Before we do so there is another important thing to consider. Caring for anyone at the End of Life is a privilege but it is also emotionally (and sometimes physically draining) for professional carers too. As a social care worker you will have been very involved with individuals, their family and friends as the EOL approaches. You may have had a role in their care for many years. You need to take care of yourself to continue this caring. Take a few minutes to write, draw a picture or spider diagram in the space below to show how you are supported in your role.

Think about who supports you in your work role and how that support is given

Who supports you in your life away from work?

How you relax and have fun away from work.

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Helping others to cope with grief and bereavement. As we have seen above there can be particular difficulties to be faced by friends and family when someone who has dementia dies, due to the length and the nature of the disease. Your support is very important. You can look at what you can do before the death

Keep everyone informed of what is happening especially whenever here is a deterioration in the individual’s condition

Be available to answer any questions

Ensure that last wishes are respected

Be aware of any cultural, spiritual or religious issues that need to be observed before or following the death and ensuring the wishes are carried out.

Add some other ways you can offer support before the death here:

You can look at what you can do after the death has occurred:

Provide information about what happens next

Ensure privacy for family and stay with them if they wish

Be aware that they will need support in the future – leave the way open for them to make further contact if they wish to.

Supply information about organisations or spiritual leaders who may be able to help in the future.

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Add some other ways you can provide support after the death here:

It is difficult for those close to an individual who dies to take in a lot of information at the time of the death. It is best to supply written information as well. See what information is already available for relatives after a death in your work area. Look for pamphlets or booklets that can be added to this –sources may be via internet searches –try some of the organisations mentioned above, some local funeral directors have information. Your tutor can help you get started if you find this difficult. Make a list of organisations below who can provide support to those who are bereaved –remember to include organisations that support children as well as those that support adults. A person who dies can be part of a family of all ages.

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Remember before introducing literature to your work area you will need to talk to your managers. Place a copy of the additional information you have gathered in your portfolio. Look back to your list of those who will need support after a death. You may have put work colleagues. What support is already available for colleagues in your work area? Are there other ways of support you think would help colleagues?

If you work in a Care Home you may have included other residents in the earlier activity. These residents too may have known the individual over a long period of time. It is important they are told and given the chance to be involved either in the funeral or other ways of remembering such as special events.

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Write down what happens in your place of work now about informing others and any ways of remembering the person. What might you change or introduce after discussion with your manager?

Now you have completed the work in this section Write a reflective piece that demonstrates how you supported care workers, family and friends, or other residents if applicable when a person with dementia died. How did you ensure that there would be support in the future if needed? How did the family and friends react –for example did they experience relief that the situation was over –guilt about what they had or had not done –or other reactions. How did you feel about supporting them with these reactions? Were other residents informed –what happened then? Were there any special acts of remembrance, observations of cultural practices or funeral rites that gave closure and helped those involved? How did you and colleagues deal with the death –were you able to review what had happened –were you able to learn any lessons to help improve future care? How did you personally help to support those other social care workers or family and friends in the final stages after the death? Give an example of how you gave support.

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Well done you are nearly at the end of the work towards this module. Spend a few minutes thinking over what you have learnt about caring for individuals with dementia at the end of life. I hope you feel you understand more about your role and how important it is to the individuals you care for and their families. Make some notes here if you want to.

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Further reading Websites including: Dying Matters; www.dementia.stir.ac.uk; SCIE; www.myhomelife.co.uk Coping with grief and loss http://www.helpguide.org/mental/grief_loss.htm The five stages of grief Elisabeth Kubler-Ross and David Kessler http://grief.com/the-five-stages-of-grief/ Understanding loss grief and bereavement http://dyingmatters.org/sites/default/files/user/documents/Resources/ACP%20for%20volunteers/M2%20Handouts%20Sec%203.pdf Loss, grief and bereavement http://inctr-palliative-care-handbook.wikidot.com/loss-grief-and-bereavement

Completed Activity Now you have completed this activity we recommend you go back to your own evidence log on page 4 and fill in the page number and type of evidence (eg case study or reflective account) for the assessment criteria you have completed in this activity. Remember – these are highlighted green in the grid at the start of each activity.

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Summary This module has looked at the care of individuals with dementia at the end of life. Understanding the symptoms and changes experienced by those with dementia helps to ensure that they receive high quality end of life care. Social work carers have a vital role in providing end of life care to individuals with dementia. As the population ages and the number of people with dementia increases this need will grow. There is a need to make plans for the future as early as possible in the disease process while the individual is still able to make their own decisions. It is important to ensure that care is person centred and to take the time to know the individual and understand how their past experiences impact on their present behaviours. It is important to be able to notice non-verbal clues when individuals can no longer communicate verbally. The module has considered the needs of those who care for individuals with dementia and how they can be supported. Take a few minutes to look back over the module and write down 5 things you have learnt and how you will put them into practice.

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The good news is that you have nearly completed this unit! You have had the chance to think about end of life care and dementia. You have considered how to assess and support an individual’s needs. As a last task, repeat the assessment you completed at the start of the unit to see if your confidence has increased and discuss this with your tutor/assessor.

Confidence level

1 2 3 4 5

Understand the nature and progression of dementia

Understand the symptoms of dementia

Understand dementia as a terminal illness

Understand the importance of individualised person centred care for an individual with dementia.

Understand how to ensure individuals with dementia receive good end of life care free from pain and distress

Understand how to support family, friends and others of individuals with dementia

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CONGRATULATIONS! You have now undertaken all the activities in this unit. You now need to meet with your tutor/assessor – to discuss how you might present these completed activities as evidence towards meeting the unit learning outcomes.

1.1 1.2 1.3 1.4

2.1 2.2 2.3

3.1 3.2 3.3 3.4 3.5

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Glossary of Terms

Term Definition

End of Life Considered to be the last 12 months that a person is expected to live

Dementia Condition that has different causes but are characterised by forgetfulness in the early stages with other more severe symptoms as the disease progresses.

Advance Care Plan A way of making wishes known about end of life if they are no longer able to make their own decisions

Mental Capacity If you have ‘mental capacity’ you are able to make a particular decision for yourself. If you lack capacity, due to an illness or disability you are unable to use, process, retain information or communicate decisions. See Mental capacity Act (2005)

Lasting Power of Attorney

A legal document to allow a nominated individual to make decisions about health and welfare or finances or both on behalf of another person

Delusions A false belief about the world around them due to altered perception

Pyelonephritis Inflammation of upper urinary tract and kidney

Best Interests This has to occur if someone does not have the mental capacity (see above) to make a legal, healthcare, welfare or financial decision for themselves. This is one of the principles of the Mental Capacity Act. The decision can only be made after an assessment has deemed the individual does not have capacity. Strict principles and codes of practice should be followed to carry out the assessment and to make the best interest decision, these are set out in the Mental Capacity Act

Non verbal Communication using body language and facial expressions

Perspective The way an individual sees something

Bereavement Period of mourning and grief after a death.

Assessment Gathering information about a person’s needs and how an illness is affecting their ability to live their normal lives

Holistic Holistic means considering care or assessment from the physical, psychological, environmental and spiritual needs of an individual. This enables people to be treated as whole human beings and the impact of the illness on their quality of life is also considered

Person Centred Person centred care is providing care that is responsive to individual personal preferences, needs and values and assuring that the individual’s values guide all clinical decisions

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Continuation Sheets

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Continuation Sheets