Dementia Awareness. Trainer s Manual. Helping Australians with Dementia and their Carers

Transcription

1 Dementia Awareness Trainer s Manual Helping Australians with Dementia and their Carers

2 This initiative was delivered by Kingston City Council through the combined services of AccessCare Southern, the Chelsea Community Renewal and Positive Ageing Projects. Additional support was also provided by the Kingston City Council Economic Development and Communication and Promotions Units and the New Hope Foundation. Funding was made available by the Australian Government s Department of Health and Ageing as part of the Dementia Community Support Grants initiative. Helping Australians with Dementia and their Carers

3 What is Dementia? Dementia is the term used to describe the symptoms of a large group of illnesses which cause a progressive decline in a person s functioning. It is a broad term used to describe a loss of memory, intellect, rationality, social skills and what would be considered normal emotional reactions. (Alzheimer s Australia, accessed 10 August 2009) Helping Australians with Dementia and their Carers

4 Trainer s Manual Contents About this resource 4-5 Glossary 6-8 Requirements 9-10 Part 1 Dementia - the how, what, when and where 11 What is dementia? 12 Prevalence 13 Parts of the brain 14 Signs and symptoms of dementia Effects of dementia 18 Causes of dementia 18 Can dementia be prevented? 19 Part 2 Communications skills communicating with people with dementia 20 Communication 21 Body language 22 Listening 23 Culture and communication 24 Dementia and communication Hints for communicating with people with dementia Therapeutic approaches to communication Part 3 Behaviours of concern and how to minimise them 32 Behaviours of concern 34 Causes of behaviours of concern 35 Aggressive behaviour 36 Anxiety and/or agitation 36 Verbal disruption 36 Confusion 37 Repetition 37 Suspicion 37 Sexually inappropriate behaviour 38 Part 4 Confidentiality and ethics 39 Ethical issues Further information 43 Bibliography Appendix 1 - Pre and post test 46 Appendix 2 - Participant feedback form Dementia Awareness Trainer s Manual 3

5 About this resource About this resource Background information: This project was funded by the Australian Government s Department of Health and Ageing as part of the Dementia Community Support Grants Project. Related National Competency It is based on parts of the National Competency CHCAC319A - Provide support to people living with dementia. Who is this manual for? This manual is for allied health professionals with knowledge of dementia to utilise for the education of people who have short, brief contact with people with dementia. In particular, volunteers, customer service staff, and club or community group members. The aim is to provide participants with an overview of dementia; how to recognise that a person may have dementia; the special skills required when communicating with people with dementia; how to recognise some of the behaviours associated with dementia; managing these behaviours and the issues of ethics and confidentiality. Can I use this manual to train direct care workers or carers? No, they are required to study the complete National Competency Unit CHCAC319A - Provide support to people living with dementia. They can also access programs and support from Alzheimer s Australia. What is contained in this manual? The manual contains all participant notes as well as more detailed trainer s notes. There are additional resources and information to teach the program. It should be used in conjunction with the Participant s Workbook. How do I use it? This training session is designed to be delivered in one or two sessions, however you may choose to deliver it in more sessions if required. There are no time frames suggested as these will vary according to each group of participants. The package has been trialled and delivered in four hours, two hours and a one hour overview. Trainers may extend the delivery time and incorporate more activities, if desired. This manual will guide you through the Participant s Workbook. Each page has the information for trainers and the corresponding PowerPoint slide number on the left hand side of the page and the text from the Participant s Manual and the relevant page number on the right hand side of the page. It is recommended that training is conducted in an interactive way. Dementia Awareness Trainer s Manual 4

6 About this resource The supplementary DVD resource The DVD Effective communication with people with dementia is required for the delivery of this training and is available from Alzheimer s Australia Vic. Tel: Fax: , Website to order online: What if I don t know the answer to a question? If the answer is not in the Workbook explain to the participant that you will undertake to find out the information and let them know next time. References can be found at the Alzheimer s Australia website Other useful web pages are listed in the back of this manual. Be sensitive to participant s reactions to the content of the training. This training has been trialled with almost 300 participants and reactions varied considerably. For example, one participant who had a family member with dementia became quite upset when viewing the slide comparing a normal brain and a brain affected by Alzheimer s disease. Dementia Awareness Trainer s Manual 5

7 Glossary Ageism Ageism is stereotyping and discrimination against people because of their age. Older people are often categorised as inflexible, forgetful and deliberately maintaining ideas and behaviours from their own era. This can lead to them believing these definitions of themselves and thus perpetrating the stereotypes (Butler, 1969) AIDS related dementia AIDS Dementia Complex (ADC) is a complication of AIDS. It is uncommon in people with the early stages of the disease, Alcohol related dementia Alzheimer s disease Amyloid plaques Antioxidants Behaviours of concern Catastrophic reaction Coercion Confabulation Creutzfeldt-Jakob disease Dementia Disinhibition Elder abuse See Korsakoff s syndrome Alzheimer s disease is the most common form of dementia. In Alzheimer s disease, as brain cells shrink or disappear, abnormal material builds up as tangles in the centre of the cells and plaques form outside the cells. These plaques and tangles prevent messages being sent along the nerve cells. Amyloid plaques consist of areas of insoluble fibrous protein that appear to play a part in the development of Alzheimer s disease. Substance found in some foods that are thought to protect body cells from damage by oxidation. Examples are blueberries, spinach, broccoli, red capsicums, onions and avocados. Behaviours sometimes exhibited by people with dementia that can cause distress or even danger to themselves and others. A catastrophic reaction occurs when a person who has dementia overreacts to a seemingly trivial situation. This may result in the person becoming verbally abusive, agitated, stubborn and unreasonable. They may also laugh or cry inappropriately. This is the act of forcing someone to do something against their will. It usually involves intimidation or force. Confusion between the memories and beliefs leading to fictional accounts of past events that are believed to be true. It is used to fill a gap in memory due to dementia. This is a rapidly progressive disease leading to dementia, walking difficulties and eventually death. Also know as mad cow disease. Dementia is a term used to describe the symptoms of a group of illnesses that cause a progressive decline in a person s functioning. There are a variety of causes. The most common cause of dementia is Alzheimer s disease, (Alzheimer s Australia accessed 10 August 2009). Inappropriate behaviour as a result of the person with dementia having a lack of restraint in several ways, including disregard for social conventions and impulsivity. Any act occurring within a relationship where there is an implication of trust, which results in harm to an older person. Abuse can include physical, sexual, financial, psychological and social abuse and/or neglect (Elder Abuse Prevention Unit accessed 10 August 2009). Dementia Awareness Trainer s Manual 6

8 Glossary Fronto temporal lobar degeneration Geriatrician Huntington s disease Infantilism Information Privacy Principles Korsakoff s syndrome Lewy bodies Neurologist Neuron Parkinson s disease Person centred care PET scan Reality orientation This consists of a group of conditions that involve degeneration of the frontal and/or temporal lobes of the brain. They have fewer problems with memory but have disinhibition and loss of motivation. A doctor who specialises in the care of older people Huntington s disease (HD) is a neurological condition that leads to the death of brain cells in certain areas of the brain causing the gradual loss of cognitive, physical and emotional function. Speaking to an adult as if they were a child. This commonly occurs when speaking to older people or people with dementia. Also known as Elderspeak it is the use of a very controlling tone, simple sentences and repetition. The list of 11 principles related to information privacy as part of the Privacy Amendment Act Each principle relates to the collection, storage, use and destruction of personal information. Refer to www. privacy.gov.au for more information This is caused by a large alcohol intake, particularly if associated with a diet deficient in thiamine (vitamin B1). It leads to irreversible brain damage and dementia and is largely preventable. Lewy bodies are abnormal spherical structures inside the nerve cells in the brain. They are thought to result in death of these cells. People with this type of dementia usually have more day to day changes in their mental ability than other types of dementia. A doctor who specialises in disorders of the nervous system. A neuron is a nerve cell. It is the basic unit of the nervous system and transmits and receives messages. Parkinson s disease is a progressive disorder of the central nervous system that affects the control of body movements and may lead to dementia. Person centred care is when the person with dementia is valued, treated as an individual, the world is seen from their perspective and their psychological needs are met. (Brooker, 2004) The phrase was originally coined for people with dementia by Tom Kitwood following on from the work of Carl Rogers. (Brooker, 2007) Positron Emission Tomography is a scan of the brain following injection of radioactive particles (positrons) which change inside the body and produce light. This is detected by a PET Scanner and a diagnostic image is produced on a computer screen. Reality orientation is therapy used to assist people with dementia to orientate themselves to time, place and where they are in the world. It is thought to decrease disorientation. Studies have shown that it needs to be sustained to maintain its usefulness. Dementia Awareness Trainer s Manual 7

9 Glossary Reminiscence Spatial awareness Validation therapy Vascular dementia A therapy used to assist people with dementia to remember things that have happened in the past. It is usually a positive experience for the person. It may be assisted by the use of old photographs, films or other memorabilia relating to that person s life. Spatial orientation is a person s awareness of where they are in the space around them. Spatial awareness is the relationship between the person and other objects and the objects to each other. A therapy used when a person with dementia is upset and anxious and is unable to reason. It involves understanding their reality and acknowledging and respecting their feelings and experience. Vascular dementia is due to problems of circulation of blood to the brain. It may be the result of several mini strokes known as transient ischaemic attacks (TIAs) or the result of high blood pressure and thickening of arteries leading to inadequate blood flow. Dementia Awareness Trainer s Manual 8

10 Requirements Requirements: whiteboard, markers and eraser name tags for participants and facilitator multimedia projector and laptop computer DVD player and television dementia and your customers PowerPoint presentation dementia and your customers Participant Workbook effective communication with people with dementia DVD available at pre and post test (Appendix 1 page 46) evaluation forms (Appendix 2 page 47-48) refreshments Introduction Welcome and housekeeping (breaks, bathrooms, classroom confidentiality, classroom etiquette, mobile phone etiquette, emergency exits). For example: People bingo this game gives people the opportunity to get to know other participants by finding out information about each other. Have a card for each participant by finding out information about each other. Have a card for each participant with a series of different questions on each card. Each question asks the participant to find another with a particular characteristic such as a woman with black hair, someone who does not like broccoli, someone who barracks for a specific football/rugby/soccer team or the person who lives furthest from the venue. The first person to complete their card wins. Distribute work books to participants Discuss aims The aims of this training are: to increase participants awareness of dementia. to inform participants of the prevalence and types of dementia and its impact on the health care system to increase participants awareness of the effects of dementia on the person and others to enhance participants appreciation of the importance of communication when interacting with people with dementia. Dementia Awareness Trainer s Manual 9

11 Requirements to improve participants knowledge of the impact of culture on the ability of a person with dementia to communicate to increase participants understanding of the causes and triggers for behaviours of concern to equip participants with the necessary knowledge and strategies to deal with behaviours of concern to ensure that participants have an awareness of confidentiality and privacy needs at all times to increase participants understanding of the vulnerability of people with dementia and the need to be alert to the possibility of elder abuse to provide participants with information about where to go for assistance or further information if required Ensure that participants are aware of the glossary on pages 5-6 of Participant s Workbook Pre-test (This can be printed from this manual and distributed to participants). Dementia Awareness Trainer s Manual 10

12 PART ONE Dementia - the how, what, when and where Dementia Awareness Trainer s Manual 11

13 Training Manual - Part One Part One Dementia - the how, what, when and where Definition of dementia Ask participants What do you understand by the word dementia? Give everyone an opportunity to participate if possible. You may like to write responses on whiteboard. Discuss the answers with the group. Show slide 3 Definition of dementia as per Alzheimer s Australia. Definition of dementia Dementia is the term used to describe the symptoms of a large group of illnesses which cause a progressive decline in a person s functioning. It is a broad term used to describe a loss of memory, intellect, rationality, social skills and what would be considered normal emotional reactions. There are a variety of causes. The most common cause of dementia is Alzheimer s disease. (Alzheimer s Australia, accessed 10 August 2009) Show slide 4 Stress that dementia is not a normal part of ageing. Show slide 5 Reiterate the importance of dignity and respect and looking at the world from the perspective of the person with dementia. dementia is NOT a normal part of ageing. dementia is more common after the age of 65 years. people in their 40s and 50s can also have dementia. the risk is one person in four over the age of 85 years. however, the longer a person lives, the more likely they are to develop dementia. A person with dementia needs to be valued and treated as an individual with dignity and respect. It is important for others to try and look at the world from the person s perspective in order to have a better understanding of them and be able to assist them in their day to day life. (p. 8 in Participant s Workbook) Dementia Awareness Trainer s Manual 12

14 Training Manual - Part One Part One Dementia - the how, what, when and where Prevalence of dementia Show slide 6 Prevalence of dementia Background information for trainer Today there are 22 million Australians, of whom 14 per cent are over the age of 65. By 2050, there will be 36 million Australians - but an equally momentous change is that the proportion of those over 65 will almost double to 23 per cent. That s nearly one in four Australians - compared to just one in seven Australians in In 1970, there were 7.5 people of working age to support every person over 65. Today, there are five. By 2050, that number is projected to drop to 2.7, so we will face higher costs yet slower economic growth, and that is the heart of the economic challenge of an ageing population. (Rudd, 2010) As there will be a larger population, there will be an increase in the number of people with dementia and the demand for services will be greater. Aspects that will be affected include: health retirement incomes housing employment aged care (both community and residential) taxation income support tourism and recreation Prevalence of dementia AUSTRALIA , ,130,691 (Access Economics, 2009b) WORLD million million (estimated) (Access Economics, 2009a) (p. 9 in Participant s Workbook) Dementia Prevalence Age (Access Economics, 2009a) Dementia Awareness Trainer s Manual 13

15 Training Manual - Part One Part One Dementia - the how, what, when and where The following areas will also have an impact: climate change - higher temperatures and significant heat waves the increased cost of essential goods and services the development of socially inclusive communities that recognise diversity and address disadvantage Parts of the brain and their function Show slide 7 Brain function Now let us look at the brain and some of its functions. Show slide 8 Normal brain function If the frontal lobe is affected by dementia, then planning ability is affected. This has implications for someone with dementia when planning a meal or planning a shopping trip. If the temporal lobe is affected the person may have difficulty remembering a telephone number or whether or not they have paid a bill. Show slide 9 If the parietal lobe is affected they may have problems with word finding, adding up bills or balancing accounts. If the occipital lobe is affected there may be problems with hallucinations as they do not interpret what they see correctly. If the cerebellum is affected there will be issues with voluntary movement such as walking such as the ability to perform personal hygiene tasks. Parts of the brain and their function The brain is divided into 6 main parts, each of which has its own separate functions. They are: frontal lobe Planning, organising and decision-making. Social behaviour and starting and stopping tasks. temporal lobe Memory of what is read, seen or heard. parietal lobe Language, speech, reading, maths, spatial awareness, recognition and naming. occipital lobe Vision cerebellum Balance, coordination of voluntary movement brain stem Breathing, heart rate, swallowing, reflexes, temperature, blood pressure. (p. 10 in Participant s Workbook) Dementia Awareness Trainer s Manual 14

16 Training Manual - Part One Part One Dementia - the how, what, when and where The neuron forest Show slide 10 The neuron forest An adult brain has about 100 billion nerve cells or neurons. These have branches that connect at 100 trillion points throughout the body. Scientists call this a neuron forest. The signals that travel through these cells form memories, thoughts and feelings. The neuron forest 2010 Alzheimer s Association. All rights reserved. Image credit: Jannis Productions. Stacy Jannis. Cell signalling Show slide 11 Cell signalling The signals move through cells as an electrical charge and when they move from one cell to another, chemicals transmit the signal across the gap. Alzheimer s disease affects the way electrical charges travel and also the activity of the chemicals Alzheimer s Association. All rights reserved. Image credit: Jannis Productions. Stacy Jannis. Signs and symptoms of dementia Show slides Discuss the signs and symptoms of dementia by working through the list of signs and symptoms and elaborating on each one. Memory loss Loses things and is unable to retrace steps to find the item Confusion May be unsure of day or time of day Signs and symptoms of dementia: memory loss, particularly recent memory that disrupts daily life confusion with time or place language problems (speaking & writing) difficulty finding the right words repeating the same story over and over and/or repetitive questioning difficulty with familiar tasks Dementia Awareness Trainer s Manual 15

17 Training Manual - Part One Part One Dementia - the how, what, when and where Signs and symptoms of dementia Language problems Have difficulty writing down appointments or messages. Difficulty finding the right words Forget common words and use a substitute such as machine instead of oven. Repetitive questioning Asks the same question over and over as they forget that they have already asked and that a response has been given. Difficulty with familiar task Unable to perform relatively simple tasks such as dressing or cleaning teeth. Need for assistance with daily living Need assistance with personal care tasks such as dressing and showering. Poor judgement Takes risks and signs documentation without getting someone to read it first. Frequently losing things Hides items, forgets where they are and then accuses people of theft. Loss of initiative Withdraws from usual activities and stops initiating activities. Mood changes For example - fear, nervousness, sadness, anger, depression and crying. Difficulty with visual images Has hallucinations, especially when there is poor lighting. Difficulty with spatial relationships Poor judgement of distances leading to trips and falls. Difficulty with planning Unable to plan activities, even simple things like a trip to the supermarket. Signs and symptoms of dementia: need for assistance with daily living poor judgement frequently losing things and being unable to retrace steps loss of initiative and withdrawal from usual activities fear, nervousness, sadness, anger and depression and crying trouble understanding visual images and spatial relationships difficulty with planning (p. 11 in Participant s Workbook) Dementia Awareness Trainer s Manual 16

18 Training Manual - Part One Part One Dementia - the how, what, when and where Show slide 15 Under the microscope Under the microscope People with Alzheimer s disease have fewer cells than a person with a healthy brain. Abnormal clusters of protein fragments called plaques build up between cells. Dead and dying cells contain tangles that are made up of a different type of protein. Scientists think that these may possibly be what causes cell death and tissue loss Alzheimer s Association. All rights reserved. Image credit: Jannis Productions. Stacy Jannis. Show slide 16 Compares a healthy brain and a brain with Alzheimer s disease and how brain cells that are damaged by dementia die and the brain gradually shrinks. This slide shows a cross section of the brain. The cortex, or pale brown area in the slide, shrinks. healthy brain advanced alzheimer s The ventricles or fluid filled areas of the brain become larger Alzheimer s Association. All rights reserved. Image credit: Jannis Productions. Stacy Jannis. (p. 12 in Participant Workbook) Dementia Awareness Trainer s Manual 17

19 Training Manual - Part One Part One Dementia - the how, what, when and where Effects of dementia Show slide 17 Effects of dementia Ask group What effects do you think that dementia may have on the person, remembering the earlier slides on the functions of the brain? Facilitate a conversation around these ideas. If they are having trouble, get them to imagine that they have just been diagnosed with dementia themselves. Ask group What effects do you think that dementia may have on the person s family and friends? Facilitate a conversation around these ideas. If they are having trouble, get them to imagine that a parent or best friend has just been diagnosed with dementia. Causes of dementia Show slides Causes of dementia Ask participants Do you know of any causes of dementia? List these on white board and compare with those in the workbook. Effects of dementia Effects of dementia on a person: emotional physical social Effects of dementia on family and friends: emotional physical social (p. 13 in Participant s Workbook) Causes of dementia There are over 100 conditions that cause dementia. Some common types and causes of dementia are: Alzheimer s disease (50%-70% of cases) vascular dementia dementia with Lewy bodies fronto temporal lobar degeneration Some less common causes are: Parkinson s disease alcohol related dementia (Korsakoff s syndrome) Creutzfeldt-Jacob disease (mad cow disease) AIDS related dementia Huntington s disease (p. 14 in Participant s Workbook) Dementia Awareness Trainer s Manual 18

20 Training Manual - Part One Part One Dementia - the how, what, when and where Can dementia be prevented? Show slide 20 Ask participants Is dementia preventable? Discuss answers. Show slide 21 Tips for a healthy brain Discuss how to maintain a healthy brain. Can dementia be prevented? Dementia cannot be prevented, but a healthy brain reduces the risk of developing dementia, especially vascular dementia. You can maintain a healthy brain by: staying mentally active staying physically active eating a healthy diet having regular health checks maintaining an active social life protecting your head from injury avoiding or minimising unhealthy habits (e.g smoking, alcohol consumption, junk food) (p. 15 in Participant s Workbook) Dementia Awareness Trainer s Manual 19

21 PART TWO Communication skills - communicating with people with dementia Dementia Awareness Trainer s Manual 20

22 Training Manual - Part Two Part Two Communication skills - communicating with people with dementia Communication Show slides Using the slide as a guideline, discuss communication. Remember to emphasise that communication is a two-way process Communication Communication is a way of understanding each other and we use it for many reasons and use a variety of methods. It is a very complex task requiring observation, listening and remaining engaged. Communication consists of three parts: body language 55% tone and pitch of voice 38% words we use 7% ( We communicate: with or through words with body language with visual images with tone and pitch of voice with touch with writing with our behaviours by recognising that we need to adjust our methods for different people and circumstances (p. 17 in Participant s Workbook) Dementia Awareness Trainer s Manual 21

23 Training Manual - Part Two Part Two Communication skills - communicating with people with dementia Body language Show slides Consider the importance of body language. Give practical examples such as: looking around while you are talking to another person someone standing uncomfortably close when talking to you pointing to assist when giving directions dressing appropriately nodding to acknowledge a speaker Ask participants to think of further examples of body language that they have experienced. Body language People do not always have total control of their body language and often it tells a different story to what is actually being said. Body language includes: gestures facial expressions, for example - smiling, frowning eye contact touch posture movements distance and space (personal, social and public) dress and appearance timing tone and pitch of voice head shaking or nodding, shrugging (p. 17 in Participant s Workbook) Dementia Awareness Trainer s Manual 22

24 Training Manual - Part Two Part Two Communication skills - communicating with people with dementia Listening skills Show slides After a discussion about listening skills, ask participants to role play good and bad listening skills. Ask for volunteers or nominate two participants to play the roles in the scenario below. You may like to make up your own scenario. Example of a role play scenario: A customer goes into the bank to enquire why $20.00 has been deducted from their account. They are having difficulty explaining the issue to the bank teller. The bank teller is about to go to lunch and is in a hurry to deal with the problem and keeps interrupting and rushing the customer. The customer becomes more agitated. Listening skills 3 good listening skills 8 poor listening skills 3 maintaining eye contact 8 easily distracted 3 asking questions 8 not asking questions 3 maintaining interest 8 appearing disinterested 3 allowing plenty of time 8 rushing the speaker 3 nodding or acknowledging speaker 8 interrupting listening is an important part of communication. being a good listener requires skill. (p. 18 in Participant s Workbook) Redo the role play with the bank teller using good listening skills. Dementia Awareness Trainer s Manual 23

25 Training Manual - Part Two Part Two Communication skills - communicating with people with dementia Culture and dementia Show slides Discuss the implication of culture in dementia and how it can be magnified if a person from a culturally and linguistically diverse (CALD) background has dementia. If it is appropriate and there are CALD participants in the group ask them to identify any communication issues that they may have experienced as a result of their CALD background. Write these on the whiteboard and explain how these would be magnified if the person also had dementia. Culture and dementia: Knowledge of different cultures is important when working with people with dementia. More than one in five people in Australian were born overseas (Australian Bureau of Statistics) 35% of people over 65 were born overseas Over 400 different languages are spoken including 95 Aboriginal languages. (Australian Bureau of Statistics) Different cultures have diverse perspectives about dementia so there is a need to be culturally specific when working or communicating with them. As dementia progresses people tend to revert to their first language as it is an earlier memory. This can cause further problems if the person grew up speaking a dialect as it may be difficult to find an interpreter. This loss of ability to communicate verbally increases social isolation for people with dementia. When a person is unable to communicate verbally with carers, professionals or even family they become even more disempowered and isolated. Body language and tone of voice become even more important when this happens. Employing bilingual staff is optimal, but not always possible. (p. 18 in Participant s Workbook) Dementia Awareness Trainer s Manual 24

26 Training Manual - Part Two Part Two Communication skills - communicating with people with dementia Dementia and communication Show slide 32 Discuss why a person with dementia would become upset if they have difficulty expressing themselves. For example, they may want a drink or want to go to the toilet. People with dementia may: Show slides Briefly discuss the effects of dementia on communication using the list on slide. Have difficulty finding the right words. For example, they may use the word machine that cooks instead of oven. Confabulate if they don t know the answer to a question, they will often make things up, for example, when asked a question such as how long have you attended this group a person with dementia may not know the answer but responds with Did you know that I own this building? I bought it when I won the lottery and I allow this group to use it free of charge. This is clearly untrue, but the person believes that it is true. Have difficulty organising words logically - may be able to articulate a sentence, but it may not make sense. For example, I saw the bedroom today and she said that she was sick again. Use familiar words repeatedly - as their vocabulary shrinks they use the words that they are still familiar with. For example, Did I tell you that I am very happy here? the phrase is repeated as they are the only words that the person remembers. People with dementia may: have difficulty finding the right words confabulate have difficulty organising words logically use familiar words repeatedly not understand part or all of what is being said easily lose their train of thought have their reading and writing skills deteriorate revert to speaking in their first language lose the normal social conventions - for example, swearing, rude comments speak less often often rely on body language instead of speaking retain feelings and emotions not be able to remember names have difficulty understanding time and place. (p. 19 in Participant s Workbook) Dementia Awareness Trainer s Manual 25

27 Training Manual - Part Two Part Two Communication skills - communicating with people with dementia Not understand part or all of what is being said - this leads to misunderstandings. For example, a person is told that the cost of the items in the shop is $21.00, but with the 10% discount it will be $ They only understand the first part and then complain that they have not been given the discount. Easily lose their train of thought - may be telling a story and part way through, forget what they are talking about. Have their reading and writing skills deteriorate - unable to write shopping lists or write down telephone numbers. Revert to speaking in their first language - if English is not their first language they will often forget the English that they have learned as their short term memory declines. Lose the normal social conventions. For example, they may swear, use rude comments about strangers or push into a queue. Speak less often - tend to sit and not join in conversations. Often rely on body language instead of speaking - will point to things rather than speaking. Retain feelings and emotions - these are still present. Not be able to remember names - may go through a whole list of names trying to get the correct one. Have difficulty understanding time and place - this can create confusion and anxiety. For example, they may not know why they are at the doctor s surgery and become frightened that something is wrong. Dementia Awareness Trainer s Manual 26

28 Training Manual - Part Two Part Two Communication skills - communicating with people with dementia Remember dementia may impair a person s ability to communicate effectively. It affects receptive (understanding spoken, written or visual communication) and expressive (communication of ideas, desires and intentions to others, usually through speech or printed words) language. Introduce DVD explaining that it will show examples of methods used when communicating with someone who has dementia. Show DVD - Effective communication with people with dementia Discuss DVD by: 1. asking if there are any questions 2. dividing participants into small groups and ask each group to discuss some of the points below from the DVD. Have a plenary session when all groups come together and share their ideas with the other groups. Possible discussion points from DVD: strategies adopted early will be good for the future avoid noisy places speak clearly without being condescending be patient remember rushing may lead to agitation and distress break tasks down into small steps do things with the person, but do not take over. Dementia Awareness Trainer s Manual 27

29 Training Manual - Part Two Part Two Communication skills - communicating with people with dementia limit choices reduce reliance on memory use a diary/ calendar, label cupboards and drawers, write notes remember body language and tone of voice use the senses massage, cooking and eating, walks in a perfumed garden, drive to nice view, play music don t argue acknowledge feelings and reassure and calm communicate for enjoyment Hints for communicating with people with dementia Show slides Use slides to reinforce learning from DVD and use examples from DVD to illustrate points. Person centred care is a way of working with people to meet their needs. It focuses on the client s preferences for their emotional and physical care as well as lifestyle planning. It is based on Tom Kitwood s work on personhood. Dawn Brooker (2004) characterised person centred care as: respecting the person as an appreciated member of society providing places of care that can adapt to a person s changing needs trying to understand the person s perspective Hints for communicating with people with dementia: approach from the front identify yourself and address the person by name reduce environmental distractions such as radio or television treat the person with dignity and respect you may need to use an interpreter check to see if person also has hearing or vision impairment be patient and appear interested use short, simple sentences speak slowly and clearly in a matter of fact way (p in Participant s Workbook) Dementia Awareness Trainer s Manual 28

30 Training Manual - Part Two Part Two Communication skills - communicating with people with dementia providing support that assists the person to live their life in comparative well-being. While this applies to all care for all people, it is an especially beneficial approach for people who have dementia. Ask participants to think about person centred communication by discussing in small groups how it would help a person with dementia. Bring small groups together and share ideas. Stress the value of person-centred care when communicating with a person with dementia. allow plenty of time and wait patiently for a response use body language effectively (facial expressions, gestures, posture, touch, personal space) give one step directions give visual cues write down reminders incorporate information into your conversation that will assist in orientating them be aware of memory impairment be aware of the tone and volume of your voice DO NOT Show slide 38 Ask participants to consider the things that need to be avoided when communicating with a person with dementia. You may like to get participants to role play what may happen if this is ignored or brainstorm. DO NOT: argue it will make the situation worse tell the person what they can t do tell them what they can do. For example, instead of telling them that they cannot go out of a particular door, show them the one they can use talk down to the person as if they were a young child ask a lot of questions talk about people with dementia as if they are not present, even if you think that they cannot understand you. (p. 21 in Participant s Workbook) Dementia Awareness Trainer s Manual 29

31 Training Manual - Part Two Part Two Communication skills - communicating with people with dementia Communication therapies Therapies such as validation therapy, reality orientation and reminiscence therapy aim to facilitate understanding and communication, but may also have positive effects on anxiety and mood. There is some limited evidence that these therapies may be beneficial in improving behaviour, mood, and possibly cognition. Reality therapy Show slide 39 Examples: when a person asks the time or where they are when a person asks to be reminded of a person s name Reality orientation is not used when dementia is advanced as it can cause distress to the person with dementia. Reality therapy Reality orientation can be used to orientate a person with dementia to where they are, the time, date or occasion, and who various people are. Its goal is to assist the person to relate to their environment so that they can continue to function within it. Reminiscence therapy Show slide 40 Examples: looking through a photo album walking through the garden listening to music Most people with dementia enjoy reminiscence and even if they are unable to contribute verbally, they can still enjoy reflecting on their past. It may be used to distract a person when they are upset about something. It may be pleasurable, but it may also revive sad memories. You need to be sensitive to the person s feelings and if they become distressed you may need to use another form of therapy. Reminiscence therapy Reminiscence is the act of recalling or talking about the past. Reminiscence can provide pleasure to people with dementia through recalling past events and experiences. Photos, films and other personal memorabilia may be used to promote reminiscence. (p. 22 in Participant s Workbook) Dementia Awareness Trainer s Manual 30

32 Training Manual - Part Two Part Two Communication skills - communicating with people with dementia Validation therapy Show slide 41 Examples: a person with dementia may want to cook dinner for her husband who passed away several years ago. Validation allows the development of empathy for the person and assists in the building of trust. It is also useful in reducing conflict and stress both for the person with dementia and their carers. Validation acknowledges the feelings behind the behaviour being expressed and maintains the person s dignity and self-esteem. Validation therapy Validation involves acknowledging and respecting the feelings of people with dementia by entering their reality. These feelings and thoughts are real to them, even if we know that they are not real to us. The principles of validation compliment the principles of person-centred care and help people with dementia to feel safe. (p. 22 in Participant s Workbook) Dementia Awareness Trainer s Manual 31

33 PART THREE Behaviours of concern and how to minimise them Dementia Awareness Trainer s Manual 32

34 Behaviours of concern If we spent as much time trying to understand behaviour as we spend trying to manage or control it, we might discover that what lies behind it is a genuine attempt to communicate. Goldsmith, M Slow down and listen to their voices, Journal of Dementia Care, 4 (4) (1996) Dementia Awareness Trainer s Manual 33

35 Training Manual - Part Three Part Three Behaviours of concern and how to minimise them Behaviours of concern Show slides Changes in the behaviour of a person with dementia are very common. It can be particularly upsetting when someone who was previously quiet and gentle becomes aggressive. Discuss common behaviours of concern with participants stressing that the behaviours are not deliberate. Aggressive behaviours for example, rude and abrupt Agitated behaviours for example, appears upset and restless Verbal disruption for example, shouting Confusion for example, not sure where they are and/or what they are there for Behaviours of concern There are some common behaviours that are often displayed by people with dementia. It is important to know that these behaviours are NOT deliberate, but part of the dementia. Some examples are: aggressive behaviours agitated behaviours verbal disruption confusion hallucinations and false ideas repetitive questioning suspicion sexually inappropriate behaviour (p. 25 in Participant s Workbook) Hallucinations and false ideas for example, if lighting is poor may imagine a pot plant is a person who is threatening them Repetitive questioning for example, when are we going to have lunch? Suspicion for example, Hide things and then when unable to find them, think that they have been stolen and accuse others of stealing Sexually inappropriate behaviour for example, may masturbate in public or answer door undressed. Dementia Awareness Trainer s Manual 34

36 Training Manual - Part Three Part Three Behaviours of concern and how to minimise them Causes of behaviours of concern Show slides There are many reasons why a person s behaviour may change. Sometimes the behaviours may be a result of changes to the brain as a result of the dementia. Ask participants to try and identify possible causes and triggers of behaviours of concern. Write these on the white board and facilitate a group conversation about them. Some reasons why a person s behaviour may change are: not understanding what is being said or done history Causes of behaviours of concern As all people are individual, the causes of behavioural change are also different and everyone will react in different ways. Working out what causes these changes can be quite complex. Families and carers who know the person well are often aware of the triggers and can prevent or minimise the problems. People who come across people with dementia in the course of their work or socialisation do not have the luxury of this inside knowledge. This makes trying to work out the cause of the behaviour much more difficult and in many cases there are time constraints. (p. 25 in Participant s Workbook) pain or other discomfort medication side effects poor communication language too complex or too demeaning rushing changes to routine unfamiliar environment too much background noise visual distractions culturally inappropriate environment. Dementia Awareness Trainer s Manual 35

37 Training Manual - Part Three Part Three Behaviours of concern and how to minimise them Show slides As you show slides of each of the common behaviours discuss some of the strategies suggested for dealing with them. Aggressive behaviour: this may be verbal or physical it can occur suddenly for no apparent reason it may be due to frustration (for example, unable to be understood) Try to identify the cause: focus on feelings don t get angry or upset try to distract the person (p. 26 in Participant s Workbook) Show slide 49 Anxiety and/or agitation Anxiety and/or agitation: the person may be restless the person may focus on specific details try to find the cause provide reassurance modify the environment find something for the person to do other (p. 26 in Participant s Workbook) Show slide 50 Verbal disruption Verbal disruption: try to remain calm avoid confrontation try to explain what is happening even if the person does not understand you, your tone of voice may help to calm them other (p. 27 in Participant s Workbook) Dementia Awareness Trainer s Manual 36

38 Training Manual - Part Three Part Three Behaviours of concern and how to minimise them Show slide 51 Confusion As you show slides of each of the common behaviours and some of the strategies suggested for dealing with them, ask participants if they are able to add any suggestions. It is unlikely that they will have any suggestions unless they have actually had contact with someone with dementia. Show slide 52 Repetition Confusion: stay calm try to give a clear, brief explanation use pictures as reminders offer corrections as suggestions other (p. 27 in Participant s Workbook) Repetition: it may be a word, a phrase or an activity try to find the reason focus on feelings not behaviour stay calm if it is a question, respond, even if you have to do it many times make the action an activity other (p. 27 in Participant s Workbook) Show slide 53 Suspicion Suspicion: the person with dementia may misinterpret what they see or hear leading to accusations of theft, infidelity don t take offense don t argue offer a simple response other (p. 28 in Participant s Workbook) Dementia Awareness Trainer s Manual 37

39 Training Manual - Part Three Part Three Behaviours of concern and how to minimise them. Show slide 54 Sexually inappropriate behaviour Sexually inappropriate behaviour: try to work out what is causing the behaviour. For example, the person may want to go to the toilet try to distract the person focus on the person, not the behaviour gently discourage inappropriate behaviour other. (p. 28 in Participant s Workbook) Dementia Awareness Trainer s Manual 38

40 PART FOUR Confidentiality and ethics Dementia Awareness Trainer s Manual 39

41 Training Manual - Part Four Part Four Confidentiality and ethics Confidentiality and ethics Show slide 56 Discuss the ethical issues associated with people with dementia and how they can be supported. Example: the person ahead of you in the supermarket queue is unsure what money is necessary to pay for their purchases and hands their purse to the assistant to take the appropriate amount of money out. What could you do to ensure that the client pays the correct amount and is not short-changed? Show slide 57 Privacy laws and confidentiality need to be considered, especially if information is being collected about the person. Explain how easy it is to breach privacy. Example: discussing a customer in a situation where you may be overheard or going home and discussing customers with family members. Show slide 58 Discuss the points listed and ask participants to brainstorm what they could do in each of the situations. Example: if you believe that a customer may not be capable of making their own financial decisions report this to the manager. Confidentiality and ethics There are many ethical issues associated with dementia. People who have dementia are entitled to the same dignity and respect as everybody else. Assisting the person with dementia to maintain their quality of life by respecting their needs and best interests is paramount to the success of your interaction. (p. 30 in Participant s Workbook) Privacy and confidentiality are important and the person with dementia is protected by law under the Privacy Act 1988 and Privacy Amendment Act 2004 ( 10 August 2009).These ensure that information about people is collected, stored and disposed of in the correct way and that information is only shared with permission and only with people who are authorised. (p. 30 in Participant s Workbook) People with dementia; need to be autonomous as much as possible but it is often difficult to know if they are capable of making financial decisions may be misunderstood in retail outlets and be perceived to be shoplifting may not understand queuing and staying behind barriers in places like banks and services (Wood, 2009) (p. 30 in Participant s Workbook) Dementia Awareness Trainer s Manual 40