a course for home and community care workers ......it is the palliative approach to dementia care...

A Course for Home and Community Care Workers – Facilitators Guide i

A Course for Home and Community Care Workers Facilitators Guide

Concluding the Dementia Journey. A joint project between Palliative Care NSW and Alzheimer’s Australia NSW ©2011 Alzheimer’s Australia NSW.

This publication is copyright. Except as expressly provided in the Copyright Act (1968) no part of this publication may be reproduced by any means (including electronic, mechanical, photocopying, recording, or otherwise) without prior written permission from the publisher.

A Course for Home and Community Care Workers Facilitators Guide

2 A Course for Home and Community Care Workers – Facilitators Guide

Introduction

Despite the acknowledgement by the Australian government of Alzheimer’s Disease and other progressive dementias as a national health priority in 2006, it can still be difficult for family members and even health professional to accept dementia as an illness from which someone dies. The stigma surrounding the condition has resulted in little open discussion around the condition as a terminal illness and even less discussion around the unique issues that people with dementia and those who care for them face in the advanced stages of the illness.

The gradual onset of the symptoms of dementia often means that the condition may remain undetected for a significant period of time. Symptoms may be attributed to other causes such as depression, stress or perhaps recent hospitalization or simply ‘old age’; frequently, however, they are masked or hidden by the person who is experiencing them.

“Because he was so young, the Dr. said it was just stress due to him having been retrenched ...”

“I suspected something was wrong a couple of years or so before she went missing ... but put her vagueness down to her age and the pain of her arthritis.”

All of these may lead to a delay in diagnosis which, when it finally comes, is frequently delivered as a final point in the person’s life rather than the beginning of what may be a long and winding road.

We were stunned, the Dr. said ,“It’s dementia. Come back in twelve months. That was all.”

Along that road, many arduous and difficult decisions will have to be made, none of which will be more confronting than the person’s wishes around and at end of life, including the wish to be able to die at home.

Due to impaired language and comprehension skills and the loss of cognitive ability in the advancing stages of dementia, it is important that discussion and decisions around these issues occur at a time when persons with the diagnosis are still able to articulate their desires and have a say into the kind of care, treatment and farewell they wish to receive at the end of their life.

End of life care decisions made early in the journey, with input from the person with

A Course for Home and Community Care Workers – Facilitators Guide 3

dementia, can relieve the carer of the stress of having to make difficult decisions during times of crisis. They may also mitigate the guilt of making a ‘wrong’ decision. The person with dementia has the peace and satisfaction of having made decisions that reflect their wishes and have a greater chance of having those wishes honoured at end of life.

A retrospective study by Ladislav Volicer of ‘End-of-Life care for persons with dementia in different care settings’ found that ‘care recipients dying at home had fewer symptoms and less discomfort than care recipients dying in other settings” and concluded that “quality end-of-life care can be provided at home and is facilitated b y hospice programs, effective pain control and psychiatric care.” It is the Palliative approach to dementia care that will allow this to take place, supporting as it does, the person living with dementia, their family and friends while delivering quality, comfort care until the journey is concluded. By default, the desire of those with dementia, to live and die at home means that many of those currently in the employ of home and community care organisations and unsuspecting friends and relatives may find themselves caring in the home setting for a person with dementia at end of life.

The need to support this group to fully participate in the end-of-life care of a person living and dying with dementia, forms the basis for this education resource


Principles of Palliative Care

Palliative care:

• provides relief from pain and other distressing symptoms;

• affirms life and regards dying as a normal process;

• intends neither to hasten or postpone death;

• integrates the psychological and spiritual aspects of patient care;

• offers a support system to help patients live as actively as possible until death;

• offers a support system to help the family cope during the patients illness and in their own bereavement;

• uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;

• will enhance quality of life, and may also positively influence the course of illness;

• is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

World Health Organisation Definition of Palliative Care

Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.


Dementia and Palliative Care: Exploring the Connection


Slide 1: Title slide

Slide 2: Questions

Script: This module will answer questions that were raised consistently in the focus groups and that you yourselves, may be asking ...

• What’s the connection between Palliative care and Dementia?

• What is my role as a community care worker?

Slide 3: Learning Objectives

• Define Dementia and list 5 causes

• List parts of the brain affected by dementia

• Describe ‘stages’ of Dementia

• Identify Advanced Dementia

Slide 4: What is dementia?

Script: Prior to showing the slide, ask if anyone can define the term ‘Dementia’ and ask if all participants know the Dementia-Alzheimer’s misconception i.e. If the person has dementia, does it mean they will also get Alzheimer’s and vice-versa. Also point out that Dementia is not a mental illness in the same category as Schizophrenia or bi-polar disorder; these are not degenerative conditions.

Show Slide: Dementia is a syndrome, the umbrella term used to describe the symptoms of a large number of brain illnesses that cause a progressive decline in a person’s ability to function. Dementia is a terminal illness. There is no cure available at the present time.

Workbook Activity: 2 minutes - Exercise 1.

Script: In the box in your workbook, write down any symptoms of dementia that you know of or are aware from your work or any reading you have done.

Scribe on whiteboard under headings: Signs and symptoms, Feelings, Behaviours. Discuss to ensure that participants do not categorise signs and symptoms or feelings as ‘behaviours’.


Slide 5: Parts of the Brain and functions affected by Dementia

Script: The brain is comprised of two cerebral hemispheres. The dominant side of the brain is on the left in most people. The non-dominant side is on the right. There is a small strip down the centre that controls movement. The left side moves our right arm and leg. The right side moves our left arm and leg. The rest of the brain controls our behaviour and all that makes us human: our thinking, emotions, behaviour and personality. (From: Understanding the Brain and Behaviour, Dr Helen Creasey)

Ask participants what abilities the person with dementia might lose if there was damage to:

• the temporal lobe – loss of short term memory

• the frontal lobe – ability to plan, organize and initiate activities

• the parietal lobe – the ability to find one’s way, read

• the limbic region of the brain – loss of appetite, expression of emotions

Draw participants’ attention to the Table 1 in their workbook that describes the effects of damage in the different parts of the brain.

Slide 6: Physical damage to the brain.

Script: This slide shows what happens in the brain of someone who has Alzheimer’s Disease. There are different pathologies for different types of dementia. It is included in the workbook following Table 2, Causes/Types of Dementia.

Slides 7: General Knowledge Impact of Dementia

Script: Here are a few interesting facts that tend not to be known:

• There are over 100 different brain illnesses that can cause dementia.

• Although these illnesses may start in one particular area of the brain, eventually the whole brain will be affected to some degree.

• Older age is the biggest risk factor for dementia, however, people under the age of 65, some as young as 30, are also diagnosed with dementia

Slides 8 and 9: Impact of Dementia

Script: These slides are mainly self-explanatory but are only a summary of the impact. More information will be provided when the ‘stages’ of dementia are discussed.


Slides 10, 11, 12: Causes of Dementia

Script: These are just a few of the illnesses that are associated with dementia. The most important ones are Alzheimer’s Disease, Vascular disease, Fronto-temporal and Lewy Body diseases (with its relationship to Parkinson’s Disease).

Huntington’s is autosomal dominant; if you have the gene, you will in time be affected; CJD uncommon in Australia but devastating in its effect; recent medical reports suggest that we are now seeing what is believed to be an inherited form in the children of those affected by Mad Cow’s Disease in the 1970’s and 80’s.

Alcohol-related dementia may be stopped or reversed if identified early enough.

Table 2. Causes/Types of Dementia

Disease Age of onset Key features

Alzheimer’s disease 40-90yrs

Usually >65yrs

• Memory problems• Word finding difficulties• Taking longer with routine tasks• Deterioration in social skills

Vascular dementia 40-65 years • Impairment of attention and executive function – difficulty with tasks that require conscious control and planning

• Stepwise progression

Dementia with Lewy Bodies

50+ • Fluctuation in mental state• Visual hallucinations• Parkinsonism – gait changes• Difficulties judging distances

Frontotemporal dementia

50-60 years • Behavioural and/or language changes• Personality changes• May become obsessive or repetitive

Huntington’s Disease 35-44 years • Uncontrolled movements • Personality changes• Impaired attention, slow to process info

Alcohol related dementia

Variable • Visual disturbances• Gait abnormalities• Cognitive changes


Slide 13: Duration and Progression

Script: The duration and progression of the individual illness is difficult to predict; an average length of time is 10-12 years, however, it varies from person to person

• The length and progression of the illness and what it looks like in each person may depend upon:

- the cause of dementia

- the areas of the brain that are affected

- the general health of the individual throughout the illness

Slides 14: How is dementia described? (Stages of Dementia)

Script: Dementia is a progressive condition and the person with dementia will gradually experiences losses in cognitive and functional ability. The deterioration experienced is usually classified into three stages Mild, Moderate, Advanced (Early, Middle Late). While we use these stages for ease of identification, it is important to remember that not all people with dementia will go through each stage or experience all of the losses associated with the progression of the illness.

Slide 15: Indicators of Advanced Dementia

Script: It is the more advanced stage of dementia that we are mostly concerned with in this course. Here are the indicators that someone has advanced or severe dementia. The participant manual has a table that outlines the characteristics of each stage and an expanded version of the table is also included in the Appendices at the back book. Select a few points to highlight the progression of the illness.

Ask “At what stage should palliative care begin?” The answer should be “As soon as possible”, however it is most needed in the last year of life.


Early Stage Middle Stage Advanced Stage

The person with dementia may appear normal but subtle changes will appear in behaviour, personality and intellectual functioning. Some of these changes may include

Poor recent memory• Has difficulty with new

learning and making new memories

• Loses or misplaces things by hiding them in odd places or forgets where things go, such as putting clothes in the dishwasher

• Easily loses way going to familiar places

Difficulty finding the correct word (anomia)• May substitute or make up

words that sound like or mean something like the forgotten word

• May stop talking to avoid making mistakes

Personality and mood change• Loses spark or zest for life

• Is irritable, less sensitive to others’ feelings, uncharacteristically angry when frustrated or tired

• Takes longer to do routine chores and becomes upset if rushed or if something unexpected happens

The losses become more apparent and are more disabling. Some of the changes that may be experienced include

Profound memory loss, both remote and recent• Makes up stories to fill in

gaps of memory

Short attention span• Has trouble following written

notes or completing tasks

• Cannot organize thoughts or follow logical explanations

Problems recognising people• Mixes up identity of people,

such as thinking a son is a brother or that a wife is a stranger

Agnosia • Unable to identify a

familiar object

• May take things that belong to others

Apraxia • Unable to use a familiar

object

• Needs help finding the toilet, using the shower, remembering to drink, and dressing for the weather or occasion

The person is severely disabled and totally dependent. Features of this stage include:

• Severe impairment of all cognitive functions

• Motor impairment – unsteadiness, repeated falls, reduced mobility, bed fastness

• Total loss of ability to care for oneself, incontinence, eating difficulties

• Sleeps for increasing periods of time

• Shows little awareness of environment and activities

• Increased restlessness

• Mute

• Responds through the senses

(AA 2005)

The person is at increased risk for pressure sores and infections of the urinary and respiratory tracks and aspiration pneumonia.

The course of dementia and how fast changes occur depends on the individual.

The time from the beginning of symptoms until death can range from 2 to 20 years.


Early Stage Middle Stage Advanced Stage

Lack of initiative• Does not start anything

• Withdraws, loses interest

• Has shorter attention span and less motivation to stay with an activity

• Resists change or new things

Poor judgment• Loses judgment about

money – forgets to pay, pays too much or forgets how to pay

• Has trouble organizing and thinking logically

• Has trouble making decisions

• This stage is difficult because the person still has some insight into his or her condition yet cannot understand or cope with the changes being experienced

(ACH group, 2006:11; AA, 2005)

Severe impairment of judgment• Poor judgment creates

safety issues when left alone – may wander and risk exposure, poisoning, falls, self-neglect or exploitation

Restlessness• Has restless, repetitive

movements in late afternoon or evening, such as pacing, trying doorknobs

• Continuously repeats stories, favourite words, statements, or motions like tearing tissues

• Changes in behaviour

• May become verbally and/or physically aggressive due to frustration

• May become untidy or forget manners

• May see, hear, smell or taste things that are not there

• May exhibit inappropriate sexual behaviours

(ACH group, 2006:12; AA, 2005)


Slide 16: In Addition

Script: In the Advanced Stage, there is an increased risk of pressure sores and infections of the urinary and respiratory tracks and aspiration pneumonia.

Note: Pressure sores tend not to be such a problem in those living at home, however, it is good for carers to be aware of the possibility. These may be recognised by persistent patches of red over the hip bones and on the buttocks and heels.

Note: The course of dementia and how fast changes occur depends on the individual, their general physical and emotional health status. The time from the beginning of symptoms until death can range from 2 to 20 years. The advanced stage may last up to three years, or longer, decline is gradual and it is extremely difficult to predict death.

Slide 17 (hidden)

Slide 18: Title Slide - Session 2 – About Palliative Care


Facilitator FYI: Traditionally palliative care has been most often provided to people with cancer, and to their carers, but it is increasingly recognised that anyone who has a terminal illness can benefit from receiving palliative care

Hughes (2010:8) notes that people with dementia “are less likely to receive palliative medication and pain relief, less likely to have attention paid to their spiritual and religious needs, and less likely to be referred to palliative care specialists than people who don’t have dementia (Hughes, J C Ethical issues and decision- making in dementia care. Presentation to The National Press Club of Australia, June 2010

Ouldred and Bryant (2008:308) noted that a number of barriers to accessing good palliative care for people with dementia. These include “dementia not being recognised as a terminal disease like cancer, problems in recognising the symptoms of terminal dementia and decision-making conflict between family care-givers and other health and social care providers”.


Activity - Exercise 3 Script: We are going to start this session with an Activity - Exercise 3. Pair up with one (or more) member(s) of the group and discuss the questions: What do you think Palliative Care is? Why might it be appropriate for people with dementia? Write your answer in the box provided.

Allow 10 minutes and then promote discussion around answers

Traditionally palliative care has been most often provided to people with cancer, and to their carers, but it is increasingly recognised that anyone who has a terminal illness can benefit from receiving palliative care.

Palliative care is an approach to care for people with disease that will cause death This includes dementia.

• It is a newly recognized specialist practice that evolved from caring for people with cancer and provides palliation or temporary relief of distressing symptoms.

• It is based on a philosophy of holistic compassionate care – physical, emotional, and spiritual – to relieve pain and discomfort of advanced disease and invites the person and family to participate in making decisions about future care needs and where it is best delivered. This is designed for carers, both family and paid, who will care for the person who is dying at home.

• Palliative care actively treats distressing symptoms, knowing that the underlying cause cannot be cured, for the best possible quality of life for the person facing a serious life-threatening condition, and their family.

Slide 20 and 21: Define Palliative Care

Script: According to the World Health Organisation, palliative care is considered to be an approach to care:

“... that improves the quality of life of individuals and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering….. and treatment of pain and other problems, physical, psychological and spiritual.”


Slide 22: Principles of Palliative Care

Script: Palliative care:

• Provides relief from pain and other distressing symptoms (e.g psychological, or spiritual distress)

• Affirms life and regards dying as a normal process; (at present society tends to see death more as a failure of medicine than an inevitable event of life)

• Intends neither to hasten nor postpone death;

• Integrates the psychological and spiritual aspects of care; (views these as important)

• Offers a support system to help people live as actively as possible until death (aims to keep the person connected to others and the meaningful aspects of their life for as long as they are able or wish to be connected)

Slide 23, 24: What’s the connection

Script: People are dying and do die, from dementia.

Dementia is a long-term illness that causes death and this fact alone makes palliative care important. Dementia, however, may also co-exist with other conditions such as heart or renal failure, chronic obstructive pulmonary disease or Parkinson’s disease.

Slides 25 and 26: DVD inserts – Prof. Ladislav Volicer and Dr. Ian Maddocks

Slide 27: 3 Forms of Palliative Care

Script: When considering palliative care for people with dementia, it is important to distinguish between

• a palliative approach

• specialised palliative care service provision and

• end-of-life care

In dementia care we are mainly concerned with the palliative approach although where cancer or other co-morbidities exist specialized palliative care services may be required.


Facilitator FYI :

A palliative approach to care• Encompasses the philosophy of palliative care and is appropriate for chronic debilitating life-

limiting conditions like dementia

• Provides active treatment with medications such as the cholinesterase inhibitors and views treatments for acute events such as fractures and infections as important and

• A palliative approach is appropriate from the time of the diagnosis of dementia and throughout the journey to death

• Aims to improve the quality of life of individuals with dementia and their family carers

Specialised palliative services

• People with dementia may or may not need the services of a specialist palliative care service

• These interventions are short-term and multi-disciplinary in nature. They may include the services of people such as a speech therapist, specialist nurse, social worker, GP. This team will work together to provide information and advice on complex issues. e.g. feeding/swallowing difficulties, family conflict, pain relief, psychological and spiritual distress and even the supply of equipment to ease the burden of caring at home

End-of-life care

• Is activated when the individual is identified as actively dying

• It can be difficult to predict when someone will die, but end-of-life care is generally understood to be the last weeks, days or hours of life

• It requires compassionate care that meets the individual’s comfort needs and supports people living with and dying from advanced dementia

Slide 28: Why a Palliative Approach?

Script: A palliative approach to dementia care is relevant in dementia because“It is ... holistic, compassionate care – physical, emotional and spiritual ...”

The palliative approach fits well with the philosophy of Person-centred Care that will be discussed in the spirituality module. It puts the person with dementia at the forefront of the care services, but also takes into account relationships with family and others. (Better Practice Framework – Palliative Care for People with Dementia, 2006, p 14)

It delivers care that soothes the person who is dying. (www.nia.nih.gov) End-of-Life: Helping with comfort and care

Slide 29: Title slide - Session 3 – The care worker and the palliative approach to dementia care

Script: In this session we will take a look at the role you as a care worker have to play and how you fit in. In a subsequent module we will also have a look at relationships and professional boundaries as it is very easy for the boundaries between the family and the care worker to become blurred.


Slide 30: Who provides care at the end of life?

Script: This slide shows the interconnection of all parties who may be involved in the life of the person with dementia across their journey. Participants may be able to think of others that could be included.

Slide 31: What is my role?

Script: You may be wondering what part you have to play as the person with dementia approaches the end of their life: Paid carers are an integral part of the care team, helping to ease the burden of care of an often worn out primary carer. Caring for someone who is dying allows you into the inner sanctum of the person’s and family’s life and in many ways it is a privilege to be invited in to share this experience.

Your job may appear to be about the practical tasks and aspects of caring such as bathing, dressing and feeding the person, domestic tasks such as cleaning or shopping or providing companionship for the person or respite for the family carer, however ... (next slide)

Slide 32: Care worker role cont’d

Script: However, while these things are important,

• in the palliative approach, the personhood needs of the person are not separate from the practical aspects of care

By personhood, I am talking about the things that make the person who they are and that have meaning to that individual.

Slide 33: DVD She Misses Him

Script: I now have a DVD for you to watch. It serves as a reminder that an important part of your work as a care worker is to keep the person at the forefront of your mind as you deliver. Please refer to Workbook Activity – Exercise 4.

After showing the DVD open a brief discussion about what aspects of this man’s life they would take into consideration if they were caring for him, based on what they saw:

• What things would be important to the person with dementia? To the carer? How would they use this knowledge and information to help them care?

Allow 15 minutes total for participants to think about how they would meet the various needs of the person with dementia and a brief discussion of their ideas.


Understanding Pain in Dementia and at End of Life

‘Pain impacts on dementia and dementia impacts on pain’.Dr. W. McClean, DSDC, Stirling



• Define Pain and list 4 types

• Identify individual response to pain

• Identify Chronic non-malignant pain in people with advanced dementia

• Identify myths about pain in people with dementia

• Identify barriers to pain management in people with advanced dementia

Slide 3: General Knowledge

• Around 25-50% of older people living in the community experience pain problems

• Approx 20% take analgesic (pain killing) medication regularly

• Of those taking analgesic medication, 45% have seen more than three doctors about their pain in the previous five years, and

• 63% have taken prescription pain medications for more than six months

Script: From these statistics, it is apparent that there is a significant pain problem in the older members of the community and that it is also undertreated.

The fact that more than three doctors have been consulted points to two things – either the reporting of pain was not taken seriously or they were referred for further investigation. The consumption of prescription pain medications in excess of 6 months suggests that this population is suffering from chronic pain.

(We will talk more about chronic later)


• 60-83% of older people have at least one diagnosis that places them at risk for experiencing pain (Delac, 2002)

• The most common cause is arthritis – other causes are cancer, fracture, degenerative joint disease, neuropathy and infection

Script: This slide is self-explanatory

Introduction

Research points to evidence that pain in older people in general and those with cognitive impairment in particular, is both under recognized and undertreated.

This module aims to create awareness of the high likelihood of the presence of pain in those people living with advanced dementia even in the absence of verbal communication about the pain. Through a series of self-reflective, large and small group activities it is expected that the participants will develop the skills and confidence to identify pain in their clients, to report their observations and deliver care that takes into account the needs of the person in the presence of pain. In addition, it will engender empathy through awareness of the participant’s personal experience of pain.



• Older people in hospitals receive fewer pain medications than younger patients

• There is an even greater risk of receiving inadequate pain relief post-operatively if you are a person with cognitive impairment:

67% of those with normal cognition vs 17% of people with dementia receive analgesia after a surgical or medical procedure

Script: The reasons for the low levels of pain relief are partly due to the attitude of the older person and/or their ability to communicate their needs .The awareness, attitudes and knowledge of the attendant carers are also important in ensuring that pain is minimized among these vulnerable older people.

FYI: There are several published studies on the identification and treatment of pain among nursing home residents with various degrees of dementia which underline the need for extra vigilance for pain in people with dementia. Doctors identified pain in 43% of one nursing home’s communicative residents but only in 17% of non-communicative residents; 14% of people with moderate cognitive impairment were identified as having pain compared with 8% of those with severe impairment. People with mild or no cognitive impairment had a significantly higher rate of pain recognition – 22%. Cognitively impaired nursing home residents are prescribed less analgesia by their doctors as well as being given less nurse initiated analgesia (McClean, 2000) Information from slides 5-7 is taken from ‘Pain in Older People and People with Dementia’, University of Stirling, 2007 Dr. W. McClean with Colm Cunningham. Workbook activity number two is produced in whole from this publication with the permission of Colm Cunningham, Hammond Care

Slide 6: Workbook Activity – Exercise 1 – Describing your pain experience

Script: Think about a time when you experienced pain. In your workbook list as many words as you can to describe a personal experience of pain that you have had in the last few months or weeks. Pain, e.g. throbbing. Also, try and describe what pain was for you in that situation e.g. debilitating, inconvenient

Discuss the different words that each person uses to describe their pain and the ways that people describe their pain. Make reference to the fact that each person uses different words to describe what may have been the same kind and intensity of pain.

Script: From this exercise it should now be apparent to you that everyone describes their pain differently, although there will be common elements. How did being in pain make you feel emotionally as well as physically e.g. did anyone feel fear? What caused you to feel....fear/anxiety/irritation/depressed.

Point out that there are differences in the way that each person uses the language associated with pain

• We must be aware that this fact is active in the way that people communicate their experience of pain

• Our understanding of words may be different from that of the person we are caring for

• The greater the age difference and the greater the cultural difference, the more chance there is of misunderstanding


Slide 7: Define Pain

Script: Pain is difficult to define and describe:

“Pain is whatever the experiencing person says it is, existing whenever he/she says it does”(McCaffery cited in McCaffery and Pasero, 1999)

“Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage” International Association for the Study of Pain

Script: Because perception and tolerance of pain vary widely from person to person it is difficult to formulate a definition that resonates with everyone. Essentially, “Pain is the way your brain interprets information about a particular sensation that your body is experiencing. Information (or signals) about this painful sensation are sent via nerve pathways to your brain.” Your brain interprets these signals as “Pain.” (retrieved from website of Stanford School of Medicine)

Slide 8: Elements of pain

Script: There are many notions of “pain”. It may mean anything we do not like e.g. having to work at the weekend is a pain, she’s a pain in the neck, we also talk about mental ‘pain’ when we are referring to emotional distress.

Review and become familiar with Exercise 2 prior to education session. This can be completed individually, in pairs or as a large group exercise.

It has been proposed that there are three elements to the experience of pain. These are

• the actual physical sensation

• the knowledge about the pain

• the emotional aspect

The intensity of the physical pain, the knowledge that we attribute to it and the emotions we feel as a result of the first two determine our experience. (This is well illustrated in activity two which participants will do next.)

Slide 9: Workbook Activity, Exercise 2

Activity, Exercise 2

This exercise may be completed by participants on their own, in couples, small or large groups. If completed individually, it will be useful to check for understanding of what is required on a 1:1 basis. If completed as a large group exercise, ensure that adequate time is given for participants to record group responses.) I would like you to work through all of exercise 2, sections 1 to 4.

Discuss responses: How do you think George’s responses at each stage of the diagnostic process fit with the notions of the elements of pain?

This exercise is taken from work done by the University of Scotland.


Slide 10: Types of Pain

Script:

Acute Pain is pain of relatively recent onset which normally lasts less than a month and resolves as tissue healing occurs

• It may be associated with physiological changes such as pallor, sweating, low BP, increased pulse, and changes in breathing pattern

However, these physiological changes may not occur in older people

Chronic or Persistent Pain is said to exist if it persists for more than a month beyond the course of an acute illness or a reasonable time for healing to occur, or if it recurs at intervals for months or years

• This pain usually has no physiological signs and is associated with longstanding functional and psychological impairment

(Meiner and Lueckenotte, 2006; McClean, 2000)

Chronic Malignant Pain – if Cancer is suspected as being the cause of the pain

Chronic Non Malignant Pain is the most common pain among older people; it is ongoing, often the most difficult to treat and causes a lot of disability

The last category is the one that we are most concerned with, although people with advanced dementia can still have episodes of acute pain associated e.g with skin tears, fractures and chronic malignant pain associated with co-morbidities such as cancer, arthritis or osteoporosis.

Give the following examples of different types and ask the participants to nominate the category they fit into:

• Burning a finer on a hot iron – Acute

• Osteoarthritis of the knee – Chronic Non-malignant

• Heart attack – Acute

• Cancer of the breast involving the vertebrae – Chronic Malignant

• Osteoporotic fractures of the spine – Acute > Chronic Non-malignant


Slide 11: How we react and communicate about pain

• Pain Threshold – the point at which the person experiencing an unpleasant sensation decides it as “painful”

• Pain Tolerance – the amount of time that someone can tolerate a particular level of pain before they act to avoid, stop or manage the pain

• Each and everyone of us has our own pain threshold and tolerance levels

Script: Refer back to Activity 1 and their descriptions of the pain they experienced and the difference in the ways the participants related their experience.

Point out that they may have heard it said that a particular individual has a high or low ‘threshold’ for pain. Ask the group to explain what this actually means.

Threshold is related to intensity. Tolerance is related to time.

It is often easy to ‘judge’ someone else’s pain as being less or more severe than it is, based on our own perception of what is painful e.g. an injection administered by the same person may be described as a ‘tiny prick’ or a ‘jab’; it is purely subjective.

Slide 12: (Faulty Thinking) Common misconceptions about Pain in Older People

Script: There are some prevalent beliefs in the community about pain in older people e.g. pain is a natural part of growing old

I would like you now to turn to Activity 3 in your manual and to work in pairs to come up with as many myths about older people and pain as you can.

Compare their answers in the large group against the power point slide; scribe on the whiteboard any others that are raised by the group that do not appear on the following slide.

Slide 13: Faulty Thinking

• Pain is a natural outcome of growing old

• Pain perception, or sensitivity, decreases with age.

• People with dementia do not feel pain,

• If an older person does not report pain, he or she does not have pain.

• Older people do not worry about pain; they are used to it

• Older people over-report and exaggerate their pain

• If an older person appears to be occupied, asleep, or otherwise distracted from pain, he or she does not have pain.

Slide 14: Note!

• Pain is not a natural outcome of ageing

• People living with dementia do feel pain – even if they cannot report it

Script: Re-iterate the importance of remembering this at all times as even in the earlier stages of dementia, the person will frequently report ‘no pain’ when it is fairly obvious that pain is present.


Slide 15: Hint!

If a person without dementia has pain from a certain disease or condition, then a person with dementia will have pain too.(University of Stirling, p35)

Script: This is just commonsense and the presence of pain should really be forefront in the mind of the carer whenever care is being delivered.

Slide 16: DVD

Play Excerpt of Palliative Dementia Care DVD as a summary

Ask if there are any questions or comments? Check for understanding so far.

Slides 17 and 18: Barriers to Pain identification Advanced Dementia

Two options for presentation:

Option (1) Flash up slide title Ask for input from participants, scribe on whiteboard then compare with info on the slide, or

Option (2) Reveal contents of slide, briefly talk through each point , then ask for any other barriers that have been missed that they can think of

Barriers:

• Prevailing myths and attitudes about pain

• Lack of appreciation of the extent and impact of unidentified pain

• Attendant carer’s knowledge of the person’s past pain history, e.g. old sporting injuries or co-existing conditions such as arthritis, diabetes, asthma

• The person’s previous experience of pain e.g. in childhood, childbirth, war, torture

• The impact of dementia on the person’s ability to describe/express pain use and understand speech is likely to have been lost or seriously impaired and he/she is unable to communicate their pain verbally

• About half of those with dementia will deny that they are in pain the first time they are asked

In addition, explore the possibility that a carer may, for emotional reasons, have problems dealing with the fact that the person is in pain and/or that the carer may lack personal experience of pain. (Pain in Older People, P49)

Narrative: A returned Vietnam veteran explained that he had seen so much ‘real’ pain and trauma, that it made it difficult for him to have empathy with his small child when she fell and grazed her knee or bumped her head.) It is possible that carers from war-torn countries who have been subjected to torture may reject the possibility of pain in the person with dementia, especially when it is not being verbalized.

On the other hand, there is evidence that there is a greater correlation between the patients Visual Analogue Scale rating and the carer’s VAS ratings where the carer has a history of significant personal pain experience.


Slide 19: The Impact of Advanced Dementia

Talk through each point and then point out:

The focus tends to be on the person’s inability to communicate, however the carer, must be as much aware of the contribution of physical health status that may be exacerbated by bed fastness, pressure sores, foetal curling, arthritis, osteoporosis - or just general atrophying of the body etc.

These may also be present in a person with YOD.

• The person’s ability to use and understand speech is likely to have been lost or seriously impaired and he/she is unable to communicate the pain verbally

• Long-term memories of previous pain experiences that may revive in dementia and may not be understood – the person may experience fear and anxiety

• This may cause the person to react more violently than those without dementia expect or think appropriate

• The person’s reaction may result in inappropriate sedation and/or treatment with ‘behavioural’ medications

Slide 20: Reminder for Carers

• Pain is always real to the person who has it

• Pain may be present in the absence of any obvious or visible cause

Script: Think back to your own recent experience of pain. How would you have felt if someone had insisted that you were not in as much pain as you felt? Validate their response.

Slide 21: The Careworker’s Role

Large group discussion : Script: If we accept that pain is always real to the person who has it and that pain may be present even when the person with dementia cannot tell you where and how severe it is, you may be wondering what you can do to ensure that unnecessary pain - physical, emotional and spiritual is avoided and what you can do to help meet the needs of the person with dementia who is in pain.

Slide 22 : Tips for caring (1)

• Ask the primary carer/family members about the person’s past experience of pain e.g. previous injuries or accidents/how they reacted to pain

• Find out what helped to relieve it

• Get to know the person’s usual way of being and watch for changes in behaviour or body language

• Observe, observe, observe! It is important to exclude pain as a cause of behaviour


Slide 23: Tips for caring (2)

• Use gentle, reassuring tones when speaking to the person

• Use gentle touch to make the person aware of your presence BEFORE you start a procedure

• Move about the room slowly and without making sudden loud noises

• Think before turning on lights and opening blinds

• Keep radio and TV noise to a minimum – better still play soft music that the person is known to like

Slide 24: Observable Indicators of Pain

Script: What are some of the problems of relying on words alone to describe pain?

Answer should include: Everyone has a different opinion of how severe the pain is depending on their own experience, pain threshold and tolerance.

What other ways are there to makes decisions about whether a person with dementia is in pain?

Answer should include the Observable Indicators of Pain as listed on Slide24

• Facial expression (eg. grimacing) or body language (e.g. restlessness, agitation,

• Guarding a part of the body, rocking, muscle tenseness);

• Change in vital signs such as increase in pulse rate, breathing rate, blood pressure and sweating;

• Repetitive noises or inconsolable moaning.

Slide 25: Some Ways to assess Pain in People with Advanced Dementia

Note: It is not the intention to put responsibility on the care worker to assess pain and suggest or recommend medication. In the event that the care worker observes pain that is not being treated or managed, the observation should be reported back to the agency of employment.

Script: Pain AssessmentEfforts have been made to address the problem of under-recognition of pain. Examples of Pain scales have been included in the participants’ workbook.

Pain Scales “record, in an objective manner, the signs and symptoms that are likely to indicate the existence of, and gauge the intensity of pain that a person with terminal dementia is experiencing.”

The attached Pain Scales are for your information and perusal and may assist you in recognising new or existing pain in the person you care for.

Note: It is good practice for carers and family to record of the effectiveness or otherwise of any therapeutic interventions aimed at relieving pain. (Australian Pain Society 2005). http://www.apsoc.org.au/


Pain Assessment Tools


Pain Assessment in Advanced Dementia (PAINAD) Scale

Five item observational tool. Total scores range from 0 to 10 (based on a scale of 0 to 2 for five items), with a higher score indicating more severe pain (0= no pain, 10= severe pain).

Components & Scoring of the Pain Assessment in Advanced Dementia (PAINAD Scale)

0 1 2 Score

Breathing independent of vocalization

Normal Occasional laboured breathing

Short periods of hyper-ventilation

Noisy, laboured breathing.

Long periods of hyperventilation.

Cheyne-stokes respiration*

Negative vocalization

None Occasional moan or groan

Low level speech with a negative or disapproving quality

Repeated, troubled calling out

Loud moaning or groaning

Crying

Facial expression

Smiling

Inexpressive

Sad

Frightened

Frowning

Facial grimacing

Body Language Relaxed Tense, Distressed, pacing,

Facing

Rigid, Fists clenched, Knees pulled up, Pulling or pushing away, Striking out

Consolability No need to console

Distracted or reassured by voice or touch

Unable to console, distract or reassure

Score:

Warden V, Hurley AC, Volicer L. Development and psychometric scale. Journal of American Medical Directus, 4(1): 9-15, 2003

Cheyne-stokes respiration is often produced by conditions other than pain


Breathing

1. Normal breathing is characterized by effortless, quiet, rhythmic (smooth) respirations.

2. Occasional labored breathing is characterized by episodic bursts of harsh, difficult or wearing respirations.

3. Short period of hyperventilation is characterized by intervals of rapid, deep breaths lasting a short period of time.

4. Noisy labored breathing is characterized by negative sounding breaths onbreathing in or breathing out. They may be loud, gurgling, or wheezing. They appear strenuous or wearing.

5. Long period of hyperventilation is characterized by an excessive rate and depth of breaths lasting a considerable time.

6. Cheyne-Stokes breathing is characterized by rhythmic waxing and waning of breathing from very deep to shallow breaths with periods of apnea (cessation of breathing).

Negative vocalization

1. None is characterized by speech or vocalization that has a neutral or pleasant quality.

2. Occasional moan or groan is characterized by mournful or murmuring sounds, wails or laments. Groaning is characterized by louder than usual inarticulate involuntary sounds, often abruptly beginning and ending.

3. Low level speech with a negative or disapproving quality is characterized by muttering, mumbling, whining, grumbling, or swearing in a low volume with a complaining, sarcastic or caustic tone.

4. Repeated troubled calling out is characterized by phrases or words being used over and over in a tone that suggests anxiety, uneasiness, or distress.

5. Loud moaning or groaning is characterized by mournful or murmuring sounds, wails or laments much louder than usual volume. Loud groaning is characterized by louder than usual inarticulate involuntary sounds, often abruptly beginning and ending.

6. Crying is characterized by an utterance of emotion accompanied by tears. There may be sobbing or quiet weeping.

Facial expression

1. Smiling is characterized by upturned corners of the mouth, brightening of the eyes and a look of pleasure or contentment. Inexpressive refers to a neutral, at ease, relaxed, or blank look.

2. Sad is characterized by an unhappy, lonesome, sorrowful, or dejected look. There may be tears in the eyes.

3. Frightened is characterized by a look of fear, alarm or heightened anxiety. Eyes appear wide open.


Body language

1. Relaxed is characterized by a calm, restful, mellow appearance. The person seems to be taking it easy.

2. Tense is characterized by a strained, apprehensive or worried appearance. The jaw may be clenched (exclude any contractures).

3. Distressed pacing is characterized by activity that seems unsettled. There may be a fearful, worried, or disturbed element present. The rate may be faster or slower.

4. Fidgeting is characterized by restless movement. Squirming about or wiggling in the chair may occur. The person might be hitching a chair across the room. Repetitive touching, tugging or rubbing body parts can also be observed.

5. Rigid is characterized by stiffening of the body. The arms and/or legs are tight and inflexible. The trunk may appear straight and unyielding (exclude any contractures).

6. Fists clenched is characterized by tightly closed hands. They may be opened and closed repeatedly or held tightly shut.

7. Knees pulled up is characterized by flexing the legs and drawing the knees up toward the chest. An overall troubled appearance (exclude any contractures).

8. Pulling or pushing away is characterized by resistiveness upon approach or to care. The person is trying to escape by yanking or wrenching him or herself free or shoving you away.

9. Striking out is characterized by hitting, kicking, grabbing, punching, biting, or other form of personal assault.

Consolability

1. No need to console is characterized by a sense of well being. The person appears content.

2. Distracted or reassured by voice or touch is characterized by a disruption in the behavior when the person is spoken to or touched. The behavior stops during the period of interaction with no indication that the person is at all distressed.

3. Unable to console, distract or reassure is characterized by the inability to sooth the person or stop a behavior with words or actions. No amount of comforting, verbal or physical, will alleviate the behavior.

Warden V, Hurley AC, Volicer L. Development and psychometric evaluation of the pain assessment in advanced dementia (PAINAD) scale. J Am Med Dir Assoc. 2003;4:9-15.


Reproduced by kind permission of The Australian Pain Society


End of Module Summary

Script: From the exercises you have completed, it should now be apparent to you that the person living and dying with dementia is highly likely to experience, or be experiencing pain in the final stage of their lives. Attention to the observable indicators and changes in the person’s ‘state’ or well-being’ should be reported to the case manager or care co-ordinator.

As care workers, you have the opportunity to bring great comfort to the dying person through considered and considerate care however, “As with all treatment options, pain management strategies must be provided in response to an individual’s assessed wishes, likes, preferences and/or needs.” (Alzheimer’s Australia, 2006: Palliative Care and Dementia)


Spirituality and the Palliative Approach to Dementia Care: Finding meaning at end of life


Slide 1: Title slide

Script: This module will look at spirituality in its broadest sense. This module is about exploring our own spirituality and affirming spirituality in the person living with dementia. Lack of awareness of our own spirituality and/or religious attitudes and beliefs make it easy to impose our own views on others or to invalidate the spiritual views and experiences of others. It is also about thinking about the way you currently care and different ways of delivering care that are spiritual in essence; ultimately and that will help you to create or maintain the person’s sense of connection to others and to those things that have provided meaning in their lives.


• Define spirituality and religion and recognize the similarities and differences

• Investigate our own spirituality

• Identify the spiritual needs of the person living and dying with dementia

• Identify barriers to the delivery of spiritual care in the person with advanced dementia

Slide 3: Research Findings

Script: A report on the palliative care needs for people with end stage dementia living in Scotland found that:

• Spirituality can be a difficult concept to grasp and people often find it difficult to separate spirituality from religion

Script: Spirituality means different things to different people. For some, spirituality and religion is one and the same thing, for others they are two distinctly different things.

Note: You may like to offer your own view of spirituality or talk about any difficulties you have with the notion of spirituality as a topic. Open recognition that it is a difficult subject may put participants at ease.

Script: And of great concern are the findings that :

• The spiritual needs of people with dementia are largely unrecognised and poorly understood and catered for, and that

• Some people (actually) believe that a spiritual life for the person with dementia is impossible, or unnecessary

(Lighting up Lives a report on the palliative care needs of people with end stage dementia living in Dumfries & Galloway, Scotland 2004/2006)

Note: In NSW there appears to be very little or nothing in care plans that reflect the spiritual needs of people living in residential care. At most there is a note on the standardised care plan to ‘get Mrs X to the church service once a fortnight!

Script: One person with dementia has a very different perspective, however,


Slide 4: Perspective of a person living with dementia

“this is silly ... exactly when do I cease being me? My spiritual self is reflected in the divine and given meaning as a transcendant being.”(Christine Bryden, 2005)

Script: If Christine Bryden, as a devout Christian living with dementia, can tell us that spirituality and sense of self (identity) are not lost to dementia, then we as carers and service providers must seek to meet their spiritual needs through the type and quality of care we deliver.

Slide 5: What we believe

Script: We believe that

• Meeting the spiritual needs of the person with dementia in the advanced stages and at end of life is as important as the practical aspects of care and should be a key focus of the palliative approach

Slide 6: Spirituality and Dementia? How?

Care worker interactions with persons with advanced dementia can be spiritually based through the delivery of care that is congruent with the person’s personal and family values and their beliefs about life and death. (Robertson-Gillam, 2008)

Script: Delivering spiritual care can be as simple as paying attention to the person’s personal preferences and their religious or cultural sensitivities. Try to find out what these are from the family carer and/or others.

e.g. provision of a prayer shawl to someone of Jewish background may re-ignite remote memories of the peace connected with the religious tradition.

Slides 7: Have you ever thought about what spirituality means to you?

Note: Here we are starting to explore the participants’ own ideas about spirituality and to bring them to awareness of the possible similarities and differences between their and others. You may care to refer back to any personal insights or feelings you have already mentioned .


Slide 8: Some things to think about

• Is it about being religious?

• Can people who are not religious claim to be spiritual?

• Are religion and spirituality just two sides of the same coin?

• What are some of the experiences you have had that you might consider spiritual?

Script: Here are some questions that will help you think about your answers to the next two activities in your manual.

Script: In addition, there are some quotes that provide insight into how other people view spirituality.

Workbook Activity – Exercise 1

Allow 5 minutes for participants to write down their thoughts and ideas and then open up the topic for discussion – 15 minutes.

Discuss participants’ perspectives and ideas about spirituality. Scribe on the whiteboard. Personal moral values, religious belief systems and personal world views will emerge. Use these to highlight points about care delivery, interactions, barriers etc throughout the rest of the module. This will provide a good idea of what assists and prevents the delivery of spiritual care and help you to bring into the participants’ awareness the validity of different life views and the importance of meeting the spiritual needs of the person living and dying with dementia, not their own.

Slide 9, 10 and 11:

Script: The next 3 slides are the examples already provided in your manual

Direct to Workbook Activity – Exercise 1(a)

Slide 12: Workbook Activity - Exercise 1(a)

Script: How does what you think, feel and/or wrote about what spirituality is for you, match up with other participants and the examples given in the previous 3 slides?

Slide 13: What is Spirituality? Definition

“A transcendent meaning about life, which can be expressed through religion, nature, energy, force, belief in all good, in importance of family and community”. (Robertson-Gillam, 2008)

Script: It seems that, like pain:

• Spirituality is what the individual says it is for them. It may define the uniqueness of the person. It may involve a personal quest for understanding answers to our most important life questions such as “Who am I?” and “What is my purpose in life?”

• Spirituality can be viewed as a search for meaning through relationships, love and appreciation of nature and beauty and participation in the arts such e.g. music, singing, dance and art.


• There is a growing awareness of the universality of spirituality and the essential part that it plays in maintaining personhood, even in the face of trauma, disease and chronic illness.

Spirituality is not assuaged by a weekly church service or even daily mass

Satisfaction seems to be derived through a continued relationship with God, facilitated through our relationship with others.

Slides 14 and 15: Religion

Script: Religion derived from Latin word “religare” meaning to bind together. It is a structured belief system that addresses universal spiritual questions.

• “Religionisanyspecificsystemofbeliefaboutdeity,ofteninvolvingrituals,acodeofethics,andaphilosophyoflife.” (Retrieved from www.religioustolerance.org/var_rel.htm)

• Religions require adherence to their particular doctrines and belief in and relationship to/with a Higher Power.

• It is group based, structured, organized.

Script: Read out the definitions, then continue to slides 16 and 17.

Slides 16, 17 Religions of the world

Script: (For a bit of fun and to keep things light) Ask if anyone recognises any of the symbols for any of the fourteen religions represented here. Ask if anyone knows of any other religions.

The symbols shown clockwise from the North Pole, are: Baha’i, Buddhism, Christianity, Confucianism, Hinduism, Islam, Jainism, Judaism, Shinto, Sikhism, Taoism, Wicca, Zoroastrianism, and Druidism.

Note: Zoroastrianism was founded by Zarathushtra in Persia, modern-day Iran. It may have been the world’s first monotheistic faith. It was once the religion of the Persian Empire, but has since been reduced in numbers to fewer than 200,000 today. Most religious historians believe the Jewish, Christian and Muslim beliefs concerning God and Satan, the soul, heaven and hell and the virgin birth, slaughter of the innocents, resurrection, the final judgment, etc. are all derived from Zoroastrianism.

Jainism is an ancient religion from India that teaches that the way to liberation and bliss is to live lives of harmlessness and renunciation.


Slide 18: Spirituality and Religion

Script: Each of us, regardless of our faith, has spiritual needs – recall that we said earlier that spiritual and religious needs are not necessarily the same thing.

Spirituality may exist independent of a structured belief system. Meeting spiritual needs is not simply a matter of providing opportunities for religious observance, although that may be an important element for those who have a specific faith.

The important element is that each provides hope.

Slide 19: Our Dilemma

Script: Meeting the needs of the person with dementia always pose a challenge and never more so than when we are talking about the person’s spirituality. We have a dual dilemma:

1. How to meet spiritual needs in the face of severe cognitive impairment when reason, logic and language are no longer available to the person with dementia or the carer? And in the case of the elder religious

2. How to care for someone who has lived a life of self-sacrifice, committed to the work of the church and the care and service of other people?

Slide 20: Spiritual Care: The role of the care worker

Script:

• To deliver care that takes into account the unique and specific needs of the person with dementia – individualized care, not a one-size fits all approach, requires the carer to ‘know the person’ and pay attention to their life story

• To respect both the person who is dying and their family’s meaning about life, its purpose, priorities and concepts – requires the carer to recognise that she/he must work with to the needs and requirements of the individual and their family members and the environment in which they care

Highlight that the personal beliefs and values of care workers can impact on the quality of care that they give.

• To bring and engage our ‘intuitive’ mind to each interaction – what do we mean by this? Let’s have a look at the next slide.


Slides 21 and 22: Quotes by Dr. Nan Lu, the foundation director and president of the Traditional Chinese Medicine World Foundation Large Group Discussion

Script: Repeat the last point on the previous slide ’To bring and engage our ‘intuitive’ mind to each interaction.’

“If caregivers bring only their rational mind to the task, they will judge persons with dementia as useless.” (Dr. Nan Lu)

Ask for comments on each quote in turn. What is meant by the rational mind? What is the opposite of the rational mind? The intuitive mind!

Script: The rational mind sees only the disease and uses the medical model of care. It may ignore or deny the spiritual needs of the person.

Intuitive care allows us to look beyond the disease, to see and connect with the spirituality of (or spiritual) person and to act immediately to fulfill the person’s spiritual needs as a way to hear and honour them at the end of life.

In her book ‘Inside Alzheimer’s’, Nancy Pearce tells a very moving story; she was sitting with a person with dementia in the final hours of her life and vey much feeling that she was being of little comfort and certainly not making a connection at any level when all of a sudden she felt that she should sing a song of Celtic origin. After some time, the woman sat up and forward, eyes shining and said “Anna”. She passed away peacefully a few hours later. Pearce later found out that Anna was the daughter the woman had lost some 54 years previously and to whom she had sung celtic lullabys. That’s intuitive care!

Slide 23: Meet me where I’m at!

Script: It is also a good example of the sentiment expressed here:

The person living with dementia doesn’t speak of another time and place, he or she speaks from another time and place.

Slide 24: Essentials of Spiritual Care

Be aware of:

• Body language

• Breathing patterns

• Eye contact and eye tracking

• Listening to languag(ing)

• Pay Attention! Or you may ‘miss the moment’

Script: All of these are the inroads to the soul or spirit. Informed watching (knowledge gained from knowing the person’s life story) will allow you to pick up nuances of response.


A hairdresser told the story of her mother who was dying with dementia; she had not spoken for around four months and according to her daughter seemed to be ‘hanging on’ for no apparent reason. The family had all been and maintained a quiet and respectful vigil at her bedside and all except the hairdresser had gone to ‘have a break’, telling the mother that they would be back shortly. The hairdresser sat beside mum, gently laid her hand on the arm that was resting on the mattress and started to tell her what a good a mother she had been and how happy they were to have had such a wonderful childhood and that ‘the boys’ had just gone down to have a coffee. She said she was actually talking just to keep herself from crying and wasn’t really looking at her mother, when out of the side of her eye she thought she saw her mum’s mouth move. She quickly turned around in time to see her mother smiling. She leant in close to hear her mother say, “I know” and “Tell the boys I can’t wait”. The daughter quickly cradled her mum in her arms and gave her a kiss as she took her final few breaths. She almost missed the moment!

Slide 25: End of Life Communication

Robertson-Gillam employs three vital elements to ensure effective end of life communication:

• Listening and ‘being with’

• Mirroring sounds and movements

• Connecting through rhythm of the breath and body movements

Script: There are many anecdotes of the value of just sitting quietly, listening and being with the person with dementia at end of life, however, Robertson-Gillam has achieved many startling and unexpected result through employing these three avenues of communication. This next exercise will allow you to experience her work.

Instructions: Find a partner, preferably someone you do not know. Now, sit facing each other and hold hands. Nominate who will be Person A and who will be Person B, then hold each other’s hands. If you are Person A, shut you eyes. Person B - observe the breathing pattern of Person A. Now match your breathing to their breath patterns and breathe their rhythm. Stop and swap. Discuss your experience with each other and then record your experienced in the allocated space in your workbook. Write down the first word that comes into your mind to describe your experience

Compare and contrast responses in the big group, paying particular attention to reports of feeling validated, connected, heard etc.


Slides 26 and 27: In conclusion

Read out the content of the slides, re-iterate the important job that is done by home and community care workers. Ask if there are any questions or comments, or points that anyone would like to make.

Facilitators FYK: There is synergy between the palliative approach, person-centred care and spiritual care.

Palliative care: Person-centred care – Spiritual Care

Person-centred care Palliative Approach Spiritual

Attachment Importance of sensitive communication

‘Being with’

Listening

Creating connections

Comfort Quality of life Relief from pain, physical psychological, spiritual

Identity Whole person approach Knowledge of life history

Reminiscing

Holding in esteem

Maintaining the story

Occupation Respect for autonomy Continuation of religious or spiritual rituals or practices

Participation

Inclusion Care of person and family Talking to

Meeting persons where they are at


Person-centred care (Appendix A Participant’s Manual)

Professor Tom Kitwood spearheaded a new approach to dementia care in 1995. This came to be known as person-centred care.

Person-centred care focuses on the individual with the disability, not just the disability. Person-centred care is characterised by two main components:

• An ethical foundation that acknowledges and respects the human spirit that exists in everyone

• A body of knowledge or understanding of appropriate care practices that will support the individual with dementia to maintain quality of life and independence despite the physical changes to the brain that accompany dementia

The person-centred care approach grew out of the work pioneered by:

• Social psychologists and counsellors

• The struggles of disability rights campaigns

• Advances in caring for people with learning disabilities

• The reminiscence and validation approaches

• Other creative therapies

This approach has resulted in a great many changes to the way in which we view the care practices and principles of carers of people wit dementia(Morton, I. Journal of Dementia Care, May/June 2000:28)

Person-centred care represents a cultural shift in the care of people with dementia. Until recently, carers of people with dementia focused almost exclusively on the progressive cognitive damage that occurs in the brain.

Carers sought to ‘take over’ where the brain left off by meeting the physical needs that the person was no longer able to do, such as prompting them, or helping with eating and drinking, showering, and dressing etc. Since the person was often unable to remember to complete even these basic tasks, participation in other activities was not thought possible or worthwhile.

Dementia was seen as a ‘living death’. People with dementia were viewed as indifferent to the actions of others and oblivious to the outside world. Over time, we have come to realise that in fact, the spirit that makes us human, and the ability to feel emotions such as joy, sadness and fear is not lost to people with dementia.

Thus, person-centred care involves looking beyond the brain damage to the uniqueness of each individual, their personality, their achievements and their life history.


Carers working with the person-centred care approach should:

• Focus in the remaining abilities of people with dementia and maintain independence for as long as possible

• Acknowledge the particular uniqueness of each individual, in spite of damage to the brain

• Promote opportunities to participate in meaningful and enjoyable activities

• Maintain and improve quality of life

Steps involved in successfully implementing the person-centred care approach include:

• Developing relationships with others significant to the person with dementia

• Accessing a comprehensive life history of the person with dementia

• Having unconditional positive regard for the person with dementia despite changes in their behaviour

• Acknowledging the feelings underlying confused speech and behaviour

• Reflecting on your personal interactions with the person with dementia to ensure you continue to acknowledge their unique personhood

(Adapted from Loveday, B. and Kitwood, T. 1998 Improving Dementia Care. The Journal of Dementia Care Hawker Publications, London)

Old dementia care culture:• Views dementia as a living death

• Focuses on physical destruction of brain cells

• Shows little recognition of skills and abilities retained by the person with dementia

• Places emphasis on meeting the physical needs of the person (eg nutrition, hygiene, clothing, mobility)

• Is characterised by showing little recognition of the effects of the actions of others on the person with dementia

Person-centred dementia care:• Involves looking beyond the diagnosis of dementia to understand and respect the individual

• Is a holistic approach to physical and mental health issues

• Includes a knowledge of the biography, achievements and life story of the individual

• Includes listening to the individual and maintaining their rights

• Is aware of the effects of care practices on ‘personhood’


Concluding the Dementia Journey: Dying with Dementia


Introduction

Script: Regardless of the quality of care provided and regardless of where that care is given, there will come a time when the damage to the brain of the person living with dementia will be so extensive that the body’s functions will close down. At this time, the person will enter the final stages of life and is considered to be ‘actively dying’.

If you are to be an effective carer, it is important that you have at least contemplated end of life, death and dying and expect, (if not accept) death in the people you currently care for and those you will care for in the future. For those living and dying with (and of) dementia, death may come at the end of a long and difficult journey, punctuated with highs and lows, times of difficult decision, moments of lucidity and continuing, accumulative loss. Whatever the case may be, you as a care worker will have had the privilege to be part of the person’s journey and it is important that you be prepared (as far as that is possible) for the final stages, concluding with the death of the person for death is the final piece in the jigsaw of life and as we have discussed in the ‘spirituality’ module, each of us has our own way of dealing or coming to terms with it. Unfortunately, families of persons with dementia often do not accept dementia as a terminal illness and will frequently view the person’s death as a failure of care of the medical profession and medicine itself. (The failure of medicine and the medical profession to sustain life was a frequent topic in our focus groups, even amongst those who had husbands with severe dementia and recent vascular or cardiac events)

Ask the question: So where does that leave us? How do we care, how can we continue to care if families do not see death as the inevitable experience of life that we will all have to face? Perhaps the most useful way to approach this topic is to think about it as it relates to us personally. If we have contemplated the end of our own lives and are clear about what we want, we may be more sensitive to the needs and wants of others at the end of their lives.


Learning Objectives:

• Identify the final stages of advanced dementia

• Identify when the person with dementia is actively dying

• Differentiate between a good death and a bad death

Slides 3: Quote by Rosalyn Carter

“Our ancestors were all too familiar with serious illness and death. Few lived to old age, and death often came suddenly from infections or accidents. Today, science and modern medical technology have given us different expectations.” (Rosalyn Carter, Foreword, Handbook for Mortals)

Script: This quote forms the basis of the next activity in your workbook; direct participants to the relevant page in their workbook.


Slide 4: Workbook Activity - Exercise 1

Script: What are some of the expectations that you have about illness and death? What expectations might others have? Write your thoughts in the box below.

Allow approximately 10 minutes for participants to answer the questions.

Discuss with the large group. Scribe answers on the board. Highlight similarities and differences between people. Ask if these are realistic expectations.

Slide 4. Workbook Activity - Exercise 2

Script: Contemplate (think about) the end of your life, the final days and hours. What would be a ‘good’ death for you? What would a ‘bad’ death look like?

Allow 5 to 10 minutes for participants to think about and describe what would constitute a good or bad death for them personally. Expect to find some or all of the following plus others not listed

Bad Death Good DeathPain Pain free

Prolonged In my sleepBeing dependent QuickFamily suffering Not sufferingBeing ‘messy’ Family and friends present

Unresolved business Family not sufferingBeing unprepared Faith

Alone Being comfortedPublicly Control

No privacy Nice musicTubes and machines Dignity

Slide 5: Large Group Discussion – Factors for optimal end of life careScript: Thinking about the last exercise, what do you now think is essential to ensure a good death for the person with dementia and a positive experience for their family. Discussion points should encapsulate:

• Knowing when death may occur and knowing what to expect

• Having the individual’s wishes respected and honoured

• Retaining dignity

• Good pain management and distressing symptoms relieved

• Having a choice where death occurs

• Having access to information and quality care

• Having access to spiritual and cultural support

• Planning care in advance of advanced illness

• No having life prolonged inappropriately(ACH group, 2006:18)


Slides 6 and 7: End-stage dementia: The dilemma

No-one can tell you exactly when death will occur...Why not?

• The course of dementia is unpredictable

• It varies from person to person

• The advanced stage may last for as long as three years

• Some of the signs and symptoms that herald death in other illnesses (fatigue, confusion, loss of appetite, increased sleepiness) may be present a long time before the person with dementia begins actively dying.

Script: The length of time that the person lives with advanced dementia and the presence of what in other illnesses would signify the final few weeks or months make it difficult to accurately predict the end of life for the person with dementia. There are however, some symptoms that indicate that the person may be in the last year or so of life. These were covered in the first module. Ask participants to try and recall what these were.

Slides 8: End stage dementia : Recap

• The person is usually bed bound and fully dependent upon others for all their needs

• The person may be in the foetal position

• The person is incontinent of urine and faeces and unable to use speech to communicate

• The person is mostly unresponsive and appears to be unaware of the environment

• Swallowing difficulties become more pronounced and choking episodes increase

Script: By the late stages of advanced dementia, it is easy to believe from the ravages of the progression of the illness that the person is somehow not present, ‘no longer there’. Hopefully by now you know that nothing could be further from the truth. Despite the profound disability described in this slide, there is plenty of evidence that suggests otherwise; persons with dementia are able to connect with others through the senses, through their spirituality and through maintaining their life story through relationship with people such as yourselves.

Slide 9: End stage dementia: recap

Script: Hearing is thought to be the last sense to go in many people, so always assume that what you say can be heard

The person is often still be able to hear and respond to familiar music, songs or voices and may be comforted by familiar smells (roses, incense) related to their past.

It is here that the communication techniques used so effectively by Robertson-Gillam can be put to use; sing to the person, breath to their rhythm, “listen with your heart” (‘being with’ is an important concept that was discussed in the spirituality module).


Slide 10: What to expect in the final stages of life

The family:

In the absence of any Advance Care Planning or Advance Care Directive, families may have to make difficult decisions about feeding, hydration, pain management and medical procedures. They will often be torn between palliative and non-palliative options and will be required to make ‘ethical’ decisions.

The person

Consistent weight loss, decreases in food and fluid intake and recurrent infections are noticeable

Script: The dementia journey is a difficult one, often long and arduous. It often takes its toll on family members with around 70% of family (primary) carers suffering from ill-health and depression. Consequently, when the complex issues that accompany the end stages of dementia become reality, it is crucial that the person’s wishes are known and taken into account when treatment and management are called for. This has the best chance of being achieved through forward or ‘Advance Care Planning and hopefully, the person(s) that you are/will care for have theirs in place.

In the next session we are going to look at the various elements of Advance Care Planning, mainly so that you can ask whether or not there is such a document for the person you are caring for and if so to encourage you to familiarize yourself with the contents – with the families consent, of course.

Session 2 – Advance Care Planning

Session to be devised around resources and tool kit developed by Linda Hansen. The terms and documents will be explained.

Slide 11: Title Slide Session 3 – Complex Issues and ethical dilemmas

Slide 12: Nutrition and appetite in end stage dementiaIt is normal for people who have dementia to refuse food and/or to ‘lose their appetite’ during the course of their illness. This may be due to –

• Their inability to recognize food as food

• Forgetting how to eat or use utensils

• Loss of sense of taste and smell

• Difficulty swallowing food

HOWEVER ...


Slides 13 and 14: What we know/Be aware

• Food refusal may be a sign that the body is shutting down in preparation for the ‘active dying’ stage of life and impending death

• Loss of appetite is normal at this stage (Ref. 5 EPEC)

• The person’s body is no longer able to absorb and use the nutrients and may cause the person to feel nauseous

• The person is not hungry; not eating may lead to a sense of well-being and reduced discomfort

• Clenching of teeth may be the only way for the patient to express his/her desire not to eat.

Script: Food and eating are, in the modern world, associated with caring, nurturing, socialization and pleasure. Consequently, it can be distressing and difficult for families and carers when the person with dementia begins to refuse food. They often feel that they have failed in their duty or role as a carer. It is important for all involved to realize that food refusal at end of life is normal and the ketosis of anorexia may actually serve to relieve discomfort through the release of endorphins into the blood stream.

Research, however, shows “that weight loss predicts mortality, is part of the natural progression of dementia and does not result from inadequate care. An emphasis should be placed on palliation of symptoms rather than attempts to reverse the nutritional decline associated with (end stage) dementia.” (Liza Genao, M.D., Heidi White, M.D., Duke University Medical Center, Durham, NC in New England Jnl of Medicine)

Slides 15: Decreasing fluid intake and dehydration/What we know

• It is also normal for people who are dying to stop drinking.

• Most experts feel that dehydration in the last hours of living does not cause distress, but may stimulate endorphin release that promotes the person’s sense of well-being.

• A weak pulse is part of the dying process, not an indicator of dehydration.

Script: Read out the points. Self-explanatory

Slide 16: What we know

• Intravenous fluids may sometimes be prescribed if terminal delirium is present (Ref. 15)

• Excess fluids can lead to fluid gathering in the lungs, abdomen and legs

• Excess fluid in the lungs cause breathlessness, coughing, sweating and bronchial secretions, all of which are exacerbated by loss of weight and muscle

Script: Generally, fluid administration by intravenous means is not recommended due to the side effects it has in the person whose body functions are closing down. It will sometimes be useful in the treatment of terminal delirium or restlessness and may help to reduce distress in the person. Otherwise, to insist on fluids can lead to unpleasant symptoms that are not in tune with the principles of palliative care. (Relief of suffering)


Slide 17: Be aware

• In other words, fluids at end of life may cause the person to drown in their own fluids as the lungs are unable to clear the fluid of their own accord.

• Knowing this, how attractive is the idea of hydrating the person via an intravenous drip?

Discuss participants’ responses to the last question.

Slide 18: Family: Ethical Dilemma – Food Refusal

Script: In the face of food and/or fluid refusal and the absence of an Advance Care Directive, the ‘person responsible’ or family member often must face the ‘ethical’ dilemma of deciding:

• To commence artificial feeding via a Nasogastric or PEG tube, or accept the inevitability of death and provide only comfort (palliative)care

• Note: Death is usually expected within about two weeks in the absence of eating

Slide 19: News Flash (Volicer quote)

“Tube feeding in residents with advanced dementia does not increase survival. It does not prevent aspiration pneumonia, malnutrition or pressure ulcers. It does not reduce the risk of infections or improve functional status or comfort of the patient.“ (Volicer, 2005)

Script: This is based on an extensive literature review carried out by Ladislav Volicer, however, there is other research that says the benefit is inconclusive

Slide 20: Reflection

With this knowledge, would you reconsider your own decision to be tube fed, or reverse the decision you made to keep your own parent or spouse alive at all costs?

Script: Ask for participant’s thoughts. Ask them to justify their responses.

Slide 21: Cultural Implications - Ethical Dilemma

There is a Chinese saying “Better to be a fat ghost than a thin one”

Now, if you were Chinese, what decision do you think you would make?

Script: Ask participants to ‘walk in Chinese slippers’ for a moment or two. Is this knowledge enough to make you think twice about what you would say to someone about artificial nutrition and hydration. This highlights the importance of being culturally aware and of knowing the person’s life history.


Slide 22: Recurrent Infections

Recurrent infections are a common and almost inevitable consequence of advanced dementia due to:

• reduced immune response

• incontinence

• swallowing difficulties

• immobility

• inability to report symptoms. These lead to -

- pneumonia

- frequent urinary, respiratory and gastrointestinal tract infections

- skin and eye infections

Script: The most common infections in residents with dementia are urinary tract infection (UTI), upper respiratory infection, lower respiratory tract infection, cutaneous infection, gastrointestinal infection and eye infection.

Note: These infections are almost an inevitable consequence of advanced dementia for several reasons. There is evidence that immune responses are reduced in advanced dementia decreasing the ability to resist development of an infection.

Risk of development of urinary tract infections is increased by incontinence especially in women and by urinary retention in men.

Swallowing difficulties with bronchoaspiration increase the risk of developing respiratory infections and the inability to ambulate independently increases the risk of urinary and respiratory infections, deep vein thrombosis and infected pressure ulcers.

It is also more difficult to diagnose infections in residents with dementia because of aphasia and because even individuals with mild dementia are less likely to report cough, rash, gastrointestinal symptoms, and joint pain than cognitively intact controls

Functional impairment is also an important factor because dependence in feeding and oral care is the most significant factor in predicting development of aspiration pneumonia in institutionalized elderly. (OPEC)

Slide 23: Treatment (Volicer, 2005)

• Antibiotic therapy does not seem to prolong survival and is not necessary for symptom control

• When antibiotics are used, they may cause significant adverse effects, and the diagnostic procedures associated with use of antibiotics add to the resident’s confusion and discomfort

• Antibiotics have minimal effect in the presence of recurrent infections and in the final stages of life

Script: It is generally accepted that antibiotics have little to no useful effect in the treatment of recurrent infections in the person with dementia at the end of life, and that procedures such as blood samples and MSU only add to the dress of the person, HOWEVER, a word of


Slide 24: Caution

As with any therapy or intervention, it is important to the person with dementia that each episode of infection be considered on a case-by-case basis. (Henderson, J. Making Difficult Decisions, Unpublished article, 2009, cited Alzheimer Scotland, Palliative Care in Dementia Education Resource for Health and Social Care Staff Workbook)

Script: Make sure that they understand that there job is to provide care, not to dispense advice or diagnose even with the knowledge they have acquired. They may like to suggest that it would be better for the person to discuss the matter with their GP or that they might benefit from talking to a dementia counselor. They should never advise for or against any therapy or intervention.

Slide 25: Ethical Dilemma - CPR To resuscitate at all costs, or not?

Slide 26: News Flash – Volicer (2005)

Aggressive medical treatment for residents with advanced dementia is often inappropriate for medical reasons, has a low rate of success, and can have negative outcomes that hasten functional decline and death.

Script: Cardiopulmonary resuscitation (CPR) is three times less likely to be successful in a person with dementia than in one who is cognitively intact.

• Those who initially survive are taken to an intensive care unit where most die within 24 hours; extensive bruising and broken ribs may result as a consequence of the treatment.

So now, we must ask ourselves an important question: If non-palliative options are untenable, what are the palliative options we can employ to ensure the well-being and continued comfort care of the dying person and the peace of mind of the family member?

Slides 27and 28: Workbook Activity - Exercise 3

Open discussion - Allow 15 minutes to discuss options in the large group. Encourage participants to record group ideas in their workbook.

Non-Palliative Option Palliative Option‘Prevent’ death from hunger via tube feeding

Discontinue functional feeding but provide pleasure foods eg. melted choc, teaspoons of jelly,

‘Prevent’ death from dehydration by administering intravenous fluids

Keep the person’s mouth moistened with sips of water, ice chips – or champagne, wine or beer

Revive the person via CPR, admit to hospital and ICU for further aggressive and invasive treatments

Be aware that CPR may cause fractures. Allow the dignity of a peaceful end without painful or invasive procedures

Administer antibiotics every time an infection is diagnosed, no matter how often they recur

Be aware that antibiotics do not always prolong life; provide pain relieve and comfort care – think of the person’s spiritual needs


Slide 29: In residential care

“ ... because the palliative approach is not generally used, residents with dementia suffer from several distressing conditions, such as pressure ulcers (15%), constipation (13%), pain (12%) and shortness of breath (8%) Volicer, 2005(4).”

People living and dying with dementia at home are less likely to suffer from these conditions.

Script: If the previous disclosures are not enough to persuade you against aggressive, non-palliative interventions then perhaps this piece of information will!

Slides 30: Session 4 - Active Dying – How do I know when the person is dying

Slide 31: Common signs of Active Dying

Script: Some or all of these indicators may be present immediately before death regardless of the cause: When these signs start to appear, death may only be a matter of days or hours away

Note: Functional Decrease - unable to turn in bed without assistance, incontinent of urine, unable to control bowel function, difficult to arouse, restlessness and agitation due to delirium.

Significantdecreaseinfunctionalstate:

• Fatigue

• Decreasing level of consciousness

• Decreasing appetite/food intake

• Decreasing fluid intake

• Unable to focus eyes

• Uncharacteristic restlessness or agitation

• Surface of the skin becomes cool and moist

• Blood circulation slows – hands and feet will feel cold and have a blue tinge

• Fever

• Reduced kidney function

• Laboured, irregular breathing – “Cheyne-Stokes”(Better Practice Framework – Palliative Care for People with Dementia, 2006, p 19)

Note: Decreasing level of consciousness: The majority of patients traverse the “usual road to death.” i.e. they experience increasing drowsiness, sleep most if not all of the time, and eventually become unarousable.

Note: Absence of eyelash reflexes on physical examination indicates a profound level of coma equivalent to full anesthesia. (Reference )


Slide 32: Delirium at end of life

Script: Delirium at end of life is also referred to as ‘terminal delirium’ or ‘terminal restlessness’ and has many presentations suchasagitation,fidgeting,twitching,moaning, anxiety, and hallucinations.

Frequency and severity are variable, however, the onset of Terminal Delirium or Restlessness is almost certain to cause distress those close to the dying person as they tend to correlate it with the person being in pain. It is one of the few occasions when antibiotics and intravenous fluids may be beneficial.

Note: An agitated delirium may be the first sign to herald the “difficult road to death.” It frequently presents as confusion, restlessness, and/or agitation, with or without day-night reversal. (Ref. 19) To the family and professional caregivers who do not understand it, agitated terminal delirium can be very distressing. Although previous care may have been excellent, if the delirium goes misdiagnosed or unmanaged, family members will likely remember a horrible death “in terrible pain” and cognitively impaired “because of the drugs” and may worry that their own death will be the same.

In anticipation of the possibility of terminal delirium, educate and support family and professional caregivers to understand its causes, the finality and irreversibility of the situation, and approaches to its management(EPEC).

Slide 33: Causes of Terminal Delirium

• Urinary retention

• Constipation/impaction

• Pain

Script: It also can be exacerbated by the shut down of the body’s systems during the dying process

Slides 34-38: The role of the care worker in the final stages

Facilitator: The role of all of the people involved in the care of the person in the final stages of their live is an extremely important one. Your role is to continue to contribute to the comfort of the person with dementia who is dying at home by doing everything you can to ensure their comfort and quality of life right up to the end. It is particularly useful at this time if you are aware of the end of life wishes the dying person.

Script: You may assist with practical tasks such as moistening the person’s mouth with the liquid of their choice – some people will opt for champagne, or red wine - or ‘feeding’ them with melted chocolate or mashed strawberries! Oral hygiene is extremely important at this time, so it may be useful to wipe the inside of the mouth with a dampened cloth to clean any secretions, keep the chin and neck dry;

Before you dim the lights and close the curtains, make sure that is what the person wants/has requested – some people may wish to die with the sun shining in on them or with a particular piece of music playing, or hearing a particular song

Or hymn – or with the wind on their face!!!


Slide 39: Overall

Avoid:• Taking over, being bossy or becoming the expert

• Ignoring the wishes of the person who is dying or the primary carer

• Making assumptions

• Dispensing advice, medical, legal or otherwise

• Imposing your own values and beliefs on the person or primary carer

Do:• Observe the person closely

• Report back to your provider on any concerns you may have, particularly where you suspect pain or delirium is present and untreated

• Offer practical support to the primary carer

• Expect to be personally affected by the person’s death

Script: Your aim should be to:

• honour the person’s wishes

• treat the person with respect

• preserve the person’s dignity

by doing everything you can to ensure their continuing comfort and quality of life right up to the end. In other words your care should sit within the principles of the palliative care. – relief of suffering, affirmation of life, neither hastening death nor prolonging life.

Slide 40: Signs that death has occurred

• Absence of Pulse

• Breathing stops

• Pupils of the eye are fixed and dilated

• The body becomes pale

• Body temperature drops

• Muscles and sphincters relax

• Eyes may remain open

• Jaw may fall open

• Urine and faeces may be released(Better Practice Framework – Palliative Care for People with Dementia, 2006, p 19)


Dying and Death

Signs of Active Dying Signs that death has occurred

Fatigue Absence of pulse

Decreasing level of consciousnes Breathing stops

Decreasing appetite/food intake Pupils of the eye are fixed and dilated

Decreasing fluid intake The body becomes pale

Unable to focus eyes Body temperature drops

Uncharacteristic restlessness or agitation Muscles and sphincters relax

Surface of the skin becomes cool and moist Urine and faeces may be released

Blood circulation slows – hands, and feet will feel cold and have a blue or purplish tinge

Eyes may remain open

Fever Jaw may fall open

Reduced kidney Body will become cold

Laboured, irregular breathing – “Cheyne-Stokes

Rigor mortis will eventually set in


After the Death

Script: If you are present when the person dies, or arrive at the home shortly after, they need to inform the coordinator that the person has died.

The family may wish to spend some time with the person and there may be no urgency to contact the GP or funeral director (ideally this should have been arranged previously). Others may prefer for this to be done straight away. This is a time to be sensitive to family preferences and cultures.

At some point the GP will need to be informed of the death as a GP needs to verify death before the funeral director can remove the body. The funeral director will need to be advised when the family will be ready for the body to be removed from the home.

You can do some simple and practical things at this time which may be helpful for everyone, such as making a cup of tea for those present or making phone calls as required. Always know your agency policies and procedures before you do anything. t what their policy is

It is important that you care for yourself and find someone that you can talk to and share your grief with. When you have been caring for someone for a long period of time, it is only natural that you will be upset, but the family have their own grief and cannot be expected to comfort you. Seek a colleague, coordinator or friend to share your sadness with. (Provide Palliative Care for People with Life-Limiting Illness in the Home Care Setting, p 67)


Crossing the LIne: Relationships, Boundaries and Caring at End-of-Life


Crossing the Line: Relationships, Boundaries and Caring Case Study 1

Sophie is a 56 year old woman who cares full time for her 30 year old daughter who is quite severely disabled with Down syndrome. Approximately twelve months ago, due to issues with her own health, Sophie reluctantly realized that she was going to have to have some help with the care of her daughter. Subsequently help was arranged; four days each week Zina now has several home care workers who attend to her personal care needs on a rotating roster and for two hours each fortnight Sophie also receives assistance with housework.

Over this period, Sophie has developed a good relationship with Sally, one of the carer workers; they usually have lunch together as the care worker only has half an hour between finishing with her previous client and starting at Sophie’s house. Sophie enjoys the chat and company over lunch as she tends to be somewhat isolated and is unable to accept evening invitations to go out with friends due to her caring situation.

Sally is a great source of advice to Sophie, recommending various strategies to manage Zina’s sometimes difficult behaviours and keeping her up-to-date with all the specials at the supermarket. They even gave each other presents at Christmas. Recently, Sophie had been unwell and needed to go back to the doctor’s late one afternoon to receive results of blood tests and scans. As her appointment was for 4.30 she asked Sally if she would mind ‘staying back’ to mind Zina while she went to see the doctor. Sally willingly agreed; after all it was at the end of her shift and she wasn’t in a rush to get home.

A couple of weeks later, Sophie took Sally out to lunch on her day off to say thank you for minding Zina. At lunch, Sophie told Sally her exciting news. She had booked a trip to Europe and would be going for three weeks. Sophie was flabbergasted when, instead of being happy for her, Sally responded with a very indignant, “What! How can you afford to do that? You’re on a carer’s pension!” Sophie was upset and replied, “That’s very rude of you to ask me that. I’ve never asked you how you afford to go on your trips three or four times a year with your mother.” “That’s different,” replied Sally,”I work.......and anyway my mother pays.”

Sophie countered the last remark with a request for an apology which Sally refused. The next week, Sally turned up for lunch as usual and acted as if nothing had ever happened. Sophie, however, is considering asking for someone to replace her as she is still feeling hurt and upset by Sally’s remarks at lunch and her refusal to apologies. Sophie confided to her mother “friends don’t treat each other like that!”


Who has crossed the line? And how?

Howcouldthissituationhavebeenavoidedinthefirstplace:

What should happen now?



Julie is a home care worker with over ten years work experience. In this time she has cared for a number of frail elderly people and her clients speak highly of her.

Her newest client is Muriel, an 85 year old with advanced dementia, who is cared for by her husband John, 89. They were childhood sweethearts and have been married for over 65 years. John is determined to keep Muriel at home and allow her to die in the familiar and comforting surrounds of their married home.

John is troubled by arthritis, as was Muriel “prior to her coming down with this terrible condition” John tells Julie. He has also confided in Julie that he doesn’t know how he will go on if anything should happen to Muriel; they have never spent more than one night apart in 65 years and he doesn’t want her to suffer. Julie assures him that most people with dementia just sleep away and that he shouldn’t waste time worrying about something that probably won’t happen.

A couple of months later Julie returns from her annual holiday to discover that Muriel has just returned from hospital following a bout of aspiration pneumonia. John is very distressed as Muriel has started to refuse food and he is afraid that Muriel is going to die of starvation. He asks Julie if there is anything that he can do. The doctor at the hospital mentioned something to him about feeding Muriel by tube but he was distressed at the time and can’t remember the details of the conversation.

Julie tells him that she’s pretty sure the doctor would have been telling him that he could consider having Muriel artificially fed and hydrated by PEG, a tube that goes straight into the stomach. Her mother had this done for her grandmother and she ‘just slept away’. John asks her if she thinks it would be a good idea for him to have Muriel ‘peg fed’. Julie tells John that she thinks it would buy him some more time with Muriel, if that’s what he wants but that she has heard from a nurse that it requires an operation and could be uncomfortable for her. On the other hand it might stop her from starving to death, she supposed.

Following this conversation, John decides that having Muriel peg fed sounds like a good option and maybe he should also ask the doctor about having her fluids administered in the same way since it seemed to work for Julie’s grandmother.

John is distraught when the doctor advises against the procedure. He told John that PEG feeding is unlikely to prolong Muriel’s life and that intravenous fluids may actually cause her to drown in her own fluids as her kidneys may not be strong enough to process so much fluid. He thinks the doctor just doesn’t value Muriel because she has dementia and Julie agrees with him.


What has happened here?

Has Julie crossed the line?

What do you think Julie would have been better to do or say?



George is a 92 year old man, in the late-moderate stage of dementia. You are assigned to him five days per week to take care of his personal hygiene needs and you also do four hours each fortnight of domestic duties.

George has a daughter, Emily, who is 45. She has three children still living at home and a busy law practice that she oversees. She doesn’t have much time to do the “hard yakka” of care, as she calls it and she really appreciates that you are reliable, obliging and extremely kind to her father. She isn’t the kind of person to take advantage of anyone and would like to give you a couple of pieces from her late mother’s jewellery collection as a token of her appreciation. You are flattered that she thinks so highly of you and you accept a small diamond brooch and a ring from the impressive collection that belonged to Emily’s mother.

The following week, Emily rings to say that she will be late home and asks if you would mind staying with her father until she gets there as he can’t be left alone. She expects to arrive by 6.30pm, so you are happy to help. At 7.30 she rings again to say that she has been held up and now won’t arrive at her father’s until at least 8.30. You were planning to go to the gym and then meet a friend for coffee but you have already had to cancel your plans for the evening. You feel a little irritated but you don’t feel that you can object. After all Emily did l give you the ring and the brooch and you have found out that they are actually worth a fair sum of money.


Who crossed the line in this scenario?

Consider the possibility that Julie may now think that you ‘owe her’ and that she may begin to expect you to stay back on a regular basis. You want to stop this before it gets out of hand. You like George and would like to continue caring for him. How will you resolve the situation?



It’s Monday morning. You have just arrived at the house of Fran and Guiseppe and find out that between leaving on Friday afternoon and this morning Guiseppe had a ‘bad turn’ and spent a night in hospital. He was discharged on Sunday afternoon. Fran tells you that the tests show he had a mini-stroke, but that there is no apparent residual effect. It is very hard to tell anyway as Guiseppe is living with moderate to advanced dementia and is unable to communicate verbally.

While you are there, Fran and Guiseppe’s daughter rings from Melbourne. Fran answers the phone but after a short conversation the daughter asks Fran to put you on the phone so that she can find out what’s going on with her father. Your organization has rules that do not allow you to talk to family members. You tell Fran that are unable to take the call and advise that her daughter should ring the co-ordinator. Fran’s daughter is not happy with this response and yells at her mother who bursts into tears and begs you to talk with her daughter. This causes you a dilemma as you don’t want to break the rules but you don’t like seeing Fran so upset especially after what she’s been through at the weekend.


What do you do and why?

Do you live by the code that “rules are rules” not to be broken under any circumstances?


Glossary of Terms

Active Dying

Advance care planning The process of planning for future medical care, financial and lifestyle needs in advance of when it is needed, including end-of-life care.

Advance Directive A legally binding document that records a person’s wishes or directions in advance of an event when he or she may become unable to make decisions or communicate those decisions.

Analgesia Painkilling medications e.g. panadol, endone, morphine

Antibiotics Medications used to treat infection

Artifical nutrition and hydration (ANH)

The provision of food and fluids via a feeding tube when the person can no longer consume these by mouth

Aspiration Pneumonia Inflammation of the lungs as a result of the inhalation of fluid or fluid

Autonomy Freedom to determine one’s own decisions and actions

Benign Non-malignant, not cancerous

Bereavement

Body Language

Capacity (Mental ability and competence)

The ability to understand the context of an issue and make a decision knowing the consequence/s of that decision. Capacity is a legal concept and assumed until proven otherwise. Capacity in dementia should be decided on a case by case basis. The person may imply consent through behaviour and actions.

Comfort Care Another term used to describe the palliative approach to dementia care

Co-morbidity The presence of one or more disorders (or diseases) in addition to a primary disease or disorder e.g. cancer, diabetes, vascular disease.

Death-rattle The noisy breathing of the dying person, caused by fluid collecting in the breathing passages and indicates that death is imminent.

Dehydration The excessive loss of water from the body

Delirium An acute state of confusion of the mind that is life-threatening and potentially reversible; usually has a sudden onset and is associated with an underlying illness or infection e.g. of the urinary or respiratory tracts..

Dementia Dementia is a syndrome, the umbrella term used to describe the symptoms of a large number of brain illnesses that cause a progressive decline in a person’s ability to function. Dementia is a terminal illness. There is no cure available at the present time.


Dysphagia Difficulty swallowing

Dyspnoea Difficulty with breathing

End-of-life care An important part of palliative care in the final stage of life; it may include actions such as moistening the mouth with ice or orange slices, oral hygiene, gentle touch or massage, singing, reminiscing, music or religious or spiritual rituals. Death can be expected within a period of hours, days or weeks. Determining when this phase begins can be difficult. Some authors refer to this as ‘terminal care’ and others refer to end of life care over a much longer time period

Ethics Moral principles or values held by indivduals or groups around a particular issue eg. Euthanasia, PEG feeding, CPR

Incontinence The loss of ability to control bladder and/or bowel movements

Intravenous Administration of fluid or medications via a tube into the vein

Malignant Harmful; life-threatening; usually associated with cancer

Non-malignant Benign, non-cancerous

Opiates Sedatives containing opium eg. Morphine. This type of drug is commonly used in palliative care and has a painkilling and sedating effect. It does not hasten the end of life.

Pain “Pain is whatever the experiencing person says it is, existing whenever he/she says it does” (McCaffery cited in McCaffery and Pasero, 1999)

“Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage”. (International Association for the Study of Pain)

Pain Threshold The point at which the person experiencing an unpleasant sensation decides it as “painful”.

Pain Tolerance The length of time that someone can tolerate a particular level of pain before they act to avoid, stop or manage the pain.

Palliative care A holistic approach to care for the person with a terminal illness; it aims to maximise the quality of life through the provision of pain relief and attention to the physical, spiritual, emotional and practical needs of the person with dementia and their carers.


PEG feeding Percutaneous Endoscopic Gastostomy. The insertion of a feeding tube passed through the abdominal wall to provide nutrition to the person who cannot swallow or whose food intake is inadequate,

Quality of Life

Religion

Signs and symptoms Signs are what we may notice about the illness e.g. memory loss, personality changes

Symptoms are what the person experiences e.g. confusion

Spirituality

Terminal agitation or restlessness

The unsettled or restless behaviours and actions that may be observable in the last days and hours of life; symptoms may include jerking or twitching movements, grunting or calling out.

Well-being

Enduring Power of Attorney (finances), Will (finances), Enduring Power of Guardianship (lifestyle and medical), Medical Power of Attorney (medical), Anticipatory Direction (medical).

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PO Box 487 Strawberry Hills NSW 2050

Phone (02) 9206 2094 Fax (02) 9281 0157 Email [email protected] Web www.palliativecarensw.org.au

Gibson-Denney Centre Building 21, Macquarie Hospital Campus Corner Coxs & Norton Roads North Ryde NSW 2113

Phone (02) 9805 0100 Email [email protected] Web www.alznsw.asn.au

a course for home and community care workers ......it is the palliative approach to dementia care...

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