A Course for Home and Community Care Workers Facilitators Guide. A Course for Home and Community Care Workers Facilitators Guide

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

2 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.

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4 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 2 A Course for Home and Community Care Workers Facilitators Guide

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

6 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. 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. 4 A Course for Home and Community Care Workers Facilitators Guide

7 Dementia and Palliative Care: Exploring the Connection A Course for Home and Community Care Workers Facilitators Guide 5

8 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. 6 A Course for Home and Community Care Workers Facilitators Guide

9 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. A Course for Home and Community Care Workers Facilitators Guide 7

10 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 years Impairment of attention and executive function difficulty with tasks that require conscious control and planning Stepwise progression Dementia with Lewy Bodies Frontotemporal dementia 50+ Fluctuation in mental state Visual hallucinations Parkinsonism gait changes Difficulties judging distances years Behavioural and/or language changes Personality changes May become obsessive or repetitive Huntington s Disease years Uncontrolled movements Personality changes Impaired attention, slow to process info Alcohol related dementia Variable Visual disturbances Gait abnormalities Cognitive changes 8 A Course for Home and Community Care Workers Facilitators Guide

11 Slide 13: Duration and Progression Script: The duration and progression of the individual illness is difficult to predict; an average length of time is 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. A Course for Home and Community Care Workers Facilitators Guide 9

12 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. 10 A Course for Home and Community Care Workers Facilitators Guide

13 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) A Course for Home and Community Care Workers Facilitators Guide 11

14 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 Slide 19: Learning Objectives 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. 12 A Course for Home and Community Care Workers Facilitators Guide

15 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 lifethreatening 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. A Course for Home and Community Care Workers Facilitators Guide 13

16 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. 14 A Course for Home and Community Care Workers Facilitators Guide

17 Facilitator FYI : A palliative approach to care Encompasses the philosophy of palliative care and is appropriate for chronic debilitating lifelimiting 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. ( 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. A Course for Home and Community Care Workers Facilitators Guide 15

18 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. 16 A Course for Home and Community Care Workers Facilitators Guide

19 Understanding Pain in Dementia and at End of Life Pain impacts on dementia and dementia impacts on pain. Dr. W. McClean, DSDC, Stirling A Course for Home and Community Care Workers Facilitators Guide 17

20 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. Slide 2: Learning Objectives 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) Slide 4: General Knowledge 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 18 A Course for Home and Community Care Workers Facilitators Guide

21 Slide 5: General Knowledge 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 A Course for Home and Community Care Workers Facilitators Guide 19

22 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. 20 A Course for Home and Community Care Workers Facilitators Guide

23 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 A Course for Home and Community Care Workers Facilitators Guide 21

24 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. 22 A Course for Home and Community Care Workers Facilitators Guide

25 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. A Course for Home and Community Care Workers Facilitators Guide 23

26 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 24 A Course for Home and Community Care Workers Facilitators Guide

27 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 Assessment Efforts 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). A Course for Home and Community Care Workers Facilitators Guide 25

28 Pain Assessment Tools 26 A Course for Home and Community Care Workers Facilitators Guide

29 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) Score Breathing independent of vocalization Negative vocalization Facial expression Normal None Smiling Inexpressive Occasional laboured breathing Short periods of hyper-ventilation Occasional moan or groan Low level speech with a negative or disapproving quality Sad Frightened Frowning Body Language Relaxed Tense, Distressed, pacing, Facing Consolability No need to console Distracted or reassured by voice or touch Noisy, laboured breathing. Long periods of hyperventilation. Cheyne-stokes respiration* Repeated, troubled calling out Loud moaning or groaning Crying Facial grimacing Rigid, Fists clenched, Knees pulled up, Pulling or pushing away, Striking out 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 A Course for Home and Community Care Workers Facilitators Guide 27

30 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. 28 A Course for Home and Community Care Workers Facilitators Guide

31 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. A Course for Home and Community Care Workers Facilitators Guide 29

32 Reproduced by kind permission of The Australian Pain Society 30 A Course for Home and Community Care Workers Facilitators Guide

33 A Course for Home and Community Care Workers Facilitators Guide 31

34 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 coordinator. 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) 32 A Course for Home and Community Care Workers Facilitators Guide

35 Spirituality and the Palliative Approach to Dementia Care: Finding meaning at end of life A Course for Home and Community Care Workers Facilitators Guide 33

36 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. Slide 2: Learning Objectives 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, 34 A Course for Home and Community Care Workers Facilitators Guide

37 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. A Course for Home and Community Care Workers Facilitators Guide 35

38 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. 36 A Course for Home and Community Care Workers Facilitators Guide

39 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. Religion is any specific system of belief about deity, often involving rituals, a code of ethics, and a philosophy of life. (Retrieved from 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. A Course for Home and Community Care Workers Facilitators Guide 37