Dementia Awareness · Older people are often categorised as inflexible, forgetful and deliberately maintaining ideas and behaviours from their own era. This can lead to them believing

Dementia Awareness

Trainer’s Manual

Helping Australians with Dementia and their Carers

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.


“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)

What is Dementia?


Dementia Awareness Trainer’s Manual 3

Trainer’s Manual

ContentsAbout 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 15-17 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 25-28 Hints for communicating with people with dementia 28-29 Therapeutic approaches to communication 30-31

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 40-42

Further information 43 Bibliography 44-45

Appendix 1 - Pre and post test 46

Appendix 2 - Participant feedback form 47-48


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.

• RelatedNationalCompetency

It is based on parts of the National Competency CHCAC319A - Provide support to people living with dementia.

www.ntis.gov.au

• Whoisthismanualfor?

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.

• CanIusethismanualtotraindirectcareworkersorcarers?

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.

• Whatiscontainedinthismanual?

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.

• HowdoIuseit?

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.


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: 9815 7800 Fax: 9815 7801, Website to order online: www.alz.seekbooks.com.au

WhatifIdon’tknowtheanswertoaquestion?

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 www.alzheimers.org.au. Other useful web pages are listed in the back of this manual.

Besensitivetoparticipant’sreactionstothecontentofthetraining.

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.

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 See Korsakoff’s syndrome dementia

Alzheimer’s disease 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 Amyloid plaques consist of areas of insoluble fibrous protein that appear to play a part in the development of Alzheimer’s disease.

Antioxidants 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 of concern Behaviours sometimes exhibited by people with dementia that can cause distress or even danger to themselves and others.

Catastrophic reaction 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.

Coercion This is the act of forcing someone to do something against their will. It usually involves intimidation or force.

Confabulation 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.

Creutzfeldt-Jakob This is a rapidly progressive disease leading to dementia, walking difficulties and disease eventually death. Also know as ‘mad cow disease.’

Dementia “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).

Disinhibition 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.

Elder abuse “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).


Glossary

Fronto temporal This consists of a group of conditions that involve degeneration lobar degeneration of the frontal and/or temporal lobes of the brain. They have fewer problems with memory but have disinhibition and loss of motivation.

Geriatrician A doctor who specialises in the care of older people

Huntington’s disease 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.

Infantilism 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.

Information Privacy The list of 11 principles related to information privacy as part of the Privacy Principles Amendment Act 2004. Each principle relates to the collection, storage, use and destruction of personal information. Refer to www. privacy.gov.au for more information

Korsakoff’s syndrome 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 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.

Neurologist A doctor who specialises in disorders of the nervous system.

Neuron A neuron is a nerve cell. It is the basic unit of the nervous system and transmits and receives messages.

Parkinson’s disease 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 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)

PET scan 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 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.


Glossary

Reminiscence 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 awareness 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.

Validation therapy 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 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.


Glossary


Requirements

Requirements:

• whiteboard,markersanderaser

• nametagsforparticipantsandfacilitator

• multimediaprojectorandlaptopcomputer

• DVDplayerandtelevision

• dementiaandyourcustomersPowerPointpresentationwww.kingston.vic.gov.au

• dementiaandyourcustomersParticipantWorkbookwww.kingston.vic.gov.au

• effectivecommunicationwithpeoplewithdementiaDVDavailableat www.alz.seekbooks.com.au

• preandposttest(Appendix1–page46)

• evaluationforms(Appendix2–page47-48)

• refreshments

Introduction

Welcome and housekeeping (breaks, bathrooms, classroom confidentiality, classroom etiquette, mobile phone etiquette, emergency exits).

Forexample:’Peoplebingo’–thisgamegivespeopletheopportunitytogettoknowotherparticipantsbyfindingout 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:

• toincreaseparticipants’awarenessofdementia.

• toinformparticipantsoftheprevalenceandtypesofdementiaanditsimpactonthehealth care system

• toincreaseparticipants’awarenessoftheeffectsofdementiaonthepersonandothers

• toenhanceparticipants’appreciationoftheimportanceofcommunicationwheninteractingwithpeoplewith dementia.


Requirements

• toimproveparticipants’knowledgeoftheimpactofcultureontheability of a person with dementia to communicate

• toincreaseparticipants’understandingofthecausesandtriggersforbehavioursofconcern

• toequipparticipantswiththenecessaryknowledgeandstrategiestodealwithbehavioursofconcern

• toensurethatparticipantshaveanawarenessofconfidentialityandprivacyneedsatalltimes

• toincreaseparticipants’understandingofthevulnerabilityofpeoplewithdementiaandtheneedtobealert to the possibility of elder abuse

• toprovideparticipantswithinformationaboutwheretogoforassistanceorfurtherinformationifrequired

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).

PART ONE


Dementia- the how, what, when and where


Training Manual - Part One

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.

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.

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)

• dementiaisNOTanormalpartofageing.

• dementiaismorecommonaftertheageof65years.

• peopleintheir40sand50scanalsohavedementia.

• theriskisonepersoninfourovertheageof85years.

• however,thelongerapersonlives,themorelikelytheyaretodevelopdementia.

Apersonwithdementianeedstobevaluedandtreatedasanindividualwithdignityandrespect.Itisimportantforotherstotryandlookattheworldfromtheperson’sperspectiveinordertohaveabetterunderstandingofthemandbeabletoassistthemintheirdaytodaylife.

(p. 8inParticipant’sWorkbook)

Instructions to Trainer Data from Participant’s Workbook

Part One Dementia - the how, what, when and where



Prevalence of dementia

Show slide 6


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 2010.

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

• agedcare(bothcommunityandresidential)

• taxation

• incomesupport

• tourismand recreation


• AUSTRALIA 2008–227,300 2050–1,130,691

(Access Economics, 2009b)

• WORLD 2008–29.8million 2050–81.1million(estimated)

(Access Economics, 2009a)




(Access Economics, 2009a)

Dementia Prevalence 2007 - 2040

Age



The following areas will also have an impact:

• climatechange-highertemperaturesandsignificant heat waves

• theincreasedcostofessentialgoodsandservices

• thedevelopmentofsociallyinclusivecommunities that recognise diversity and address disadvantage www.cotavic.org.au

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

Thebrainisdividedinto6mainparts,eachofwhichhasitsownseparatefunctions.Theyare:

• frontal lobe–Planning,organisinganddecision-making.Socialbehaviourandstartingandstoppingtasks.

• temporal lobe–Memoryofwhatisread,seenorheard.

• parietal lobe–Language,speech,reading,maths,spatialawareness,recognitionandnaming.

• occipital lobe–Vision

• cerebellum –Balance,coordinationofvoluntarymovement

• brainstem–Breathing,heartrate,swallowing,reflexes,temperature,bloodpressure.






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.

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.

Signs and symptoms of dementia

Show slides 12-14

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

Theneuronforest

Cellsignalling



© 2010 Alzheimer’s Association. www.alz.org. All rights reserved. Image credit: Jannis Productions. Stacy Jannis.


Signs and symptoms of dementia:

• memoryloss,particularlyrecentmemorythatdisruptsdailylife

• confusionwithtimeorplace

• languageproblems(speaking&writing)

• difficultyfindingtherightwords

• repeatingthesamestoryoverandoverand/orrepetitivequestioning

• difficultywithfamiliartasks



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 Forexample-fear,nervousness,sadness, anger, depression and crying.

Difficulty with visual images Has halluc-inations, 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:

• needforassistancewithdailyliving

• poorjudgement

• frequently“losing”thingsandbeingunabletoretracesteps

• lossofinitiativeandwithdrawalfromusualactivities

• fear,nervousness,sadness,angeranddepressionandcrying

• troubleunderstandingvisualimagesandspatialrelationships

• difficultywithplanning




Show slide 15

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.

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.

Thecortex,orpalebrownareaintheslide,shrinks.

The ventricles or fluid filled areas of the brain become larger.



Under the microscope



healthy brain advanced alzheimer’s

(p. 12inParticipantWorkbook)



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 18-19

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.



Effectsofdementia

Effectsofdementiaonaperson:

• emotional

• physical

• social

Effectsofdementiaonfamilyandfriends:

• emotional

• physical

• social


Causesofdementia

Thereareover100conditionsthatcausedementia.

Somecommontypesandcausesofdementiaare:

• Alzheimer’sdisease(50%-70%ofcases)

• vasculardementia

• dementiawithLewybodies

• frontotemporallobardegeneration

Somelesscommoncausesare:

• Parkinson’sdisease

• alcoholrelateddementia(Korsakoff’ssyndrome)

• Creutzfeldt-Jacobdisease(madcowdisease)

• AIDSrelateddementia

• Huntington’sdisease




Can dementia be prevented?

Show slide 20

Ask participants “Is dementia preventable?” Discuss answers.

Show slide 21

Tips for a healthy brainDiscuss how to maintain a healthy brain.



Can dementia be prevented?

Dementiacannotbeprevented,butahealthybrainreducestheriskofdevelopingdementia,especiallyvasculardementia.

Youcanmaintainahealthybrainby:

• stayingmentallyactive

• stayingphysicallyactive

• eatingahealthydiet

• havingregularhealthchecks

• maintaininganactivesociallife

• protectingyourheadfrominjury

• avoidingorminimisingunhealthyhabits(e.gsmoking,alcoholconsumption,junkfood)


PART TWO


Communication skills

- communicating with people with dementia


Training Manual - Part Two

Communication

Show slides 23-24

Using the slide as a guideline, discuss communication. Remember to emphasise that communication is a two-way process


Part Two Communicationskills-communicatingwithpeoplewithdementia

Communication

Communicationisawayofunderstandingeachotherandweuseitformanyreasonsanduseavarietyofmethods.Itisaverycomplextaskrequiringobservation,listeningandremainingengaged.

Communicationconsistsofthreeparts:

• bodylanguage–55%

• toneandpitchofvoice–38%

• wordsweuse–7%

(www.getthejob.com.au)

Wecommunicate:

• withorthroughwords

• withbodylanguage

• withvisualimages

• withtoneandpitchofvoice

• withtouch

• withwriting

• withourbehaviours

• byrecognisingthatweneedtoadjustourmethodsfordifferentpeopleandcircumstances




Bodylanguage

Show slides 25-26

Consider the importance of body language. Givepracticalexamplessuchas:

• lookingaroundwhileyouaretalkingtoanother person

• someonestandinguncomfortablyclose when talking to you

• pointingtoassistwhengivingdirections

• dressingappropriately

• noddingtoacknowledgeaspeaker

Askparticipantstothinkoffurtherexamplesofbodylanguagethattheyhaveexperienced.



Body language

Peopledonotalwayshavetotalcontroloftheirbodylanguageandoftenittellsadifferentstorytowhatisactuallybeingsaid.

Bodylanguageincludes:

• gestures

• facialexpressions,forexample-smiling, frowning

• eyecontact

• touch

• posture

• movements

• distanceandspace(personal,social andpublic)

• dressandappearance

• timing

• toneandpitchofvoice

• headshakingornodding,shrugging




Listeningskills

Show slides 27-28

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.

Exampleofaroleplayscenario:Acustomergoes into the bank to enquire why $20.00 has been deducted from their account. They are havingdifficultyexplainingtheissuetothebankteller. 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.

Redo the role play with the bank teller using good listening skills.



Listeningskills

3 goodlisteningskills 8 poorlisteningskills

3 maintainingeyecontact 8 easilydistracted

3 askingquestions 8 notaskingquestions

3 maintaininginterest 8 appearing disinterested

3 allowingplentyoftime 8 rushingthespeaker

3 noddingor

acknowledgingspeaker 8 interrupting

• listeningisanimportantpartofcommunication.

• beingagoodlistenerrequiresskill.




Culture and dementia

Show slides 29-31

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 haveexperiencedasaresultoftheirCALDbackground. Write these on the whiteboard and explainhowthesewouldbemagnifiediftheperson also had dementia.



Culture and dementia:

• Knowledgeofdifferentculturesisimportantwhenworkingwithpeoplewithdementia.

• MorethanoneinfivepeopleinAustralianwerebornoverseas(Australian Bureau of Statistics)

• 35%ofpeopleover65werebornoverseas

• Over400differentlanguagesarespokenincluding95Aboriginallanguages. (Australian Bureau of Statistics)

• Differentcultureshavediverseperspectivesaboutdementiasothereisaneedtobeculturallyspecificwhenworkingorcommunicatingwiththem.

• Asdementiaprogressespeopletendtoreverttotheirfirstlanguageasitisanearliermemory.

• Thiscancausefurtherproblemsifthepersongrewupspeakingadialectasitmaybedifficulttofindaninterpreter.

• Thislossofabilitytocommunicateverballyincreasessocialisolationforpeoplewithdementia.

• Whenapersonisunabletocommunicateverballywithcarers,professionalsorevenfamilytheybecomeevenmoredisempoweredandisolated.

• Bodylanguageandtoneofvoicebecomeevenmoreimportantwhenthishappens.

• Employingbilingualstaffisoptimal,butnotalwayspossible.




Dementia and communication

Show slide 32

Discuss why a person with dementia would becomeupsetiftheyhavedifficultyexpressingthemselves.Forexample,theymaywantadrinkor want to go to the toilet.

People with dementia may:

Show slides 33-34

Briefly discuss the effects of dementia on communication using the list on slide.

Havedifficultyfindingtherightwords.Forexample,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,whenaskedaquestionsuchashowlong 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.Forexample,‘Isawthebedroomtodayand she said that she was sick again.’

Use familiar words repeatedly - as their vocabulary shrinks they use the words that they are still familiarwith.Forexample,‘DidItellyouthatIamvery happy here?’ the phrase is repeated as they are the only words that the person remembers.



People with dementia may:

• havedifficultyfindingtherightwords

• confabulate

• havedifficultyorganisingwordslogically

• usefamiliarwordsrepeatedly

• notunderstandpartorallofwhatis beingsaid

• easilylosetheirtrainofthought

• havetheirreadingandwritingskillsdeteriorate

• reverttospeakingintheirfirstlanguage

• losethenormalsocialconventions-forexample,swearing,rudecomments

• speaklessoften

• oftenrelyonbodylanguageinstead ofspeaking

• retainfeelingsandemotions

• notbeabletoremembernames

• havedifficultyunderstandingtimeandplace.




Not understand part or all of what is being said - this leads to misunderstandings.Forexample,a person is told that the cost of the items in the shop is $21.00, but with the 10% discount it will be $18.90. 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.

Losethenormalsocialconventions.Forexample,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 - thiscancreateconfusionandanxiety.Forexample,they may not know why they are at the doctor’s surgery and become frightened that something is wrong.





Remember dementia may impair a person’s ability to communicate effectively. It affects receptive (understanding spoken, written or visual communication)andexpressive(communicationof ideas, desires and intentions to others, usually through speech or printed words) language.

IntroduceDVDexplainingthatitwillshowexamplesofmethodsusedwhencommunicatingwith 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:

• strategiesadoptedearlywillbegoodfor the future

• avoidnoisyplaces

• speakclearlywithoutbeingcondescending

• bepatient–rememberrushingmayleadtoagitation and distress

• breaktasksdownintosmallsteps

• dothingswiththeperson,butdonot take over.





• limit choices

• reducerelianceonmemory–useadiary/calendar, label cupboards and drawers, write notes

• rememberbodylanguageandtoneofvoice

• usethesenses–massage,cookingandeating, walks in a perfumed garden, drive to nice view, play music

• don’targue–acknowledgefeelingsandreassure and calm

• communicateforenjoyment

Hints for communicating with people with dementia

Show slides 35-37

Use slides to reinforce learning from DVD and use examplesfromDVD 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:

• respectingthepersonasanappreciatedmember of society

• providingplacesofcarethatcanadapttoaperson’s changing needs

• tryingtounderstandtheperson’sperspective



Hintsforcommunicatingwith people with dementia:

• approachfromthefront

• identifyyourselfandaddressthepersonbyname

• reduceenvironmentaldistractionssuchasradioortelevision

• treatthepersonwithdignityandrespect

• youmayneedtouseaninterpreter

• checktoseeifpersonalsohashearingorvisionimpairment

• bepatientandappearinterested

• useshort,simplesentences

• speakslowlyandclearlyinamatterof factway

(p. 20-21inParticipant’sWorkbook)



• providingsupportthatassiststhepersontolive 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.

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.



• allowplentyoftimeandwaitpatientlyforaresponse

• usebodylanguageeffectively(facialexpressions,gestures,posture,touch,personalspace)

• giveonestepdirections

• givevisualcues

• writedownreminders

• incorporateinformationintoyourconversationthatwillassistinorientatingthem

• beawareofmemoryimpairment

• beawareofthetoneandvolumeof yourvoice

DO NOT:

• argue–itwillmakethesituationworse

• tellthepersonwhattheycan’tdo–tellthemwhattheycando.Forexample,insteadoftellingthemthattheycannotgooutofaparticulardoor,showthemtheonetheycanuse

• talkdowntothepersonasiftheywereayoungchild

• askalotofquestions

• talkaboutpeoplewithdementiaasiftheyarenotpresent,evenifyouthinkthattheycannotunderstandyou.




Communication therapiesTherapies such as validation therapy, reality orientation and reminiscence therapy aim to facilitate understanding and communication, butmayalsohavepositiveeffectsonanxietyand 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:• whenapersonasksthetimeorwheretheyare• whenapersonaskstoberemindedofa

person’s nameReality orientation is not used when dementia is advanced as it can cause distress to the person with dementia.

Reminiscence therapy

Show slide 40Examples:• lookingthroughaphotoalbum• walkingthroughthegarden• listeningtomusicMost 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.



Reality therapy

Realityorientationcanbeusedtoorientateapersonwithdementiatowheretheyare,thetime,dateoroccasion,andwhovariouspeopleare.

Itsgoalistoassistthepersontorelatetotheirenvironmentsothattheycancontinuetofunctionwithinit.

Reminiscencetherapy

Reminiscenceistheactofrecallingortalkingaboutthepast.Reminiscencecanprovidepleasuretopeoplewithdementiathroughrecallingpasteventsandexperiences.Photos,filmsandotherpersonalmemorabiliamaybeusedtopromotereminiscence.




Validation therapy

Show slide 41Examples:• apersonwithdementiamaywanttocook

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 behaviourbeingexpressedandmaintainstheperson’s dignity and self-esteem.



Validation therapy

Validationinvolvesacknowledgingandrespectingthefeelingsofpeoplewithdementiabyenteringtheirreality.Thesefeelingsandthoughtsarerealtothem,evenifweknowthattheyarenotrealtous.Theprinciplesofvalidationcomplimenttheprinciplesofperson-centredcareandhelppeoplewithdementiatofeelsafe.


PART THREE


Behaviours of concernand how to minimise them

“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) 24–25 (1996)


Behaviours of concern


Training Manual - Part Three

Behavioursofconcern

Show slides 44-45

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–forexample,rude and abrupt

Agitated behaviours–forexample,appears upset and restless

Verbal disruption–forexample,shouting

Confusion–forexample,notsurewherethey areand/orwhattheyaretherefor

Hallucinations and false ideas –forexample, if lighting is poor may imagine a pot plant is a person who is threatening them

Repetitive questioning–forexample,whenarewe going to have lunch?

Suspicion –forexample,Hidethingsandthenwhen unable to find them, think that they have been stolen and accuse others of stealing

Sexually inappropriate behaviour –forexample,may masturbate in public or answer door undressed.


Part Three Behavioursofconcernandhowtominimisethem

Behavioursofconcern

Therearesomecommonbehavioursthatareoftendisplayedbypeoplewithdementia.ItisimportanttoknowthatthesebehavioursareNOTdeliberate,butpartofthedementia.

Someexamplesare:

• aggressivebehaviours

• agitatedbehaviours

• verbaldisruption

• confusion

• hallucinationsandfalseideas

• repetitivequestioning

• suspicion

• sexuallyinappropriatebehaviour




Causesofbehavioursofconcern

Show slides 46-47

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:

• notunderstandingwhatisbeingsaidordone

• history

• painorotherdiscomfort

• medicationsideeffects

• poorcommunication

• languagetoocomplexortoodemeaning

• rushing

• changestoroutine

• unfamiliarenvironment

• toomuchbackgroundnoise

• visualdistractions

• culturallyinappropriateenvironment.



Causesofbehavioursofconcern

Asallpeopleareindividual,thecausesofbehaviouralchangearealsodifferentandeveryonewillreactindifferentways.Workingoutwhatcausesthesechangescanbequitecomplex.Familiesandcarerswhoknowthepersonwellareoftenawareofthetriggersandcanpreventorminimisetheproblems.

Peoplewhocomeacrosspeoplewithdementiainthecourseoftheirworkorsocialisationdonothavetheluxuryofthisinsideknowledge.Thismakestryingtoworkoutthecauseofthebehaviourmuchmoredifficultandinmanycasestherearetimeconstraints.




Show slides 48-54

As you show slides of each of the common behaviours discuss some of the strategies suggested for dealing with them.

Show slide 49

Anxietyand/oragitation

Show slide 50

Verbal disruption



Aggressivebehaviour:

• thismaybeverbalorphysical

• itcanoccursuddenlyfornoapparentreason

• itmaybeduetofrustration(forexample,unabletobeunderstood)

Trytoidentifythecause:

• focusonfeelings

• don’tgetangryorupset

• trytodistracttheperson


Anxietyand/oragitation:

• thepersonmayberestless

• thepersonmayfocusonspecificdetails

• trytofindthecause

• providereassurance

• modifytheenvironment

• findsomethingforthepersontodo

• other


Verbaldisruption:

• trytoremaincalm

• avoidconfrontation

• trytoexplainwhatishappeningevenifthepersondoesnotunderstandyou,yourtoneofvoicemayhelptocalmthem

• other




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

Show slide 53

Suspicion



Confusion:

• staycalm

• trytogiveaclear,briefexplanation

• usepicturesasreminders

• offercorrectionsassuggestions

• other


Repetition:

• itmaybeaword,aphraseoranactivity

• trytofindthereason

• focusonfeelingsnotbehaviour

• staycalm

• ifitisaquestion,respond,evenifyouhavetodoitmanytimes

• maketheactionanactivity

• other


Suspicion:

• thepersonwithdementiamaymisinterpretwhattheyseeorhearleadingtoaccusationsoftheft,infidelity

• don’ttakeoffense

• don’targue

• offerasimpleresponse

• other




Show slide 54 Sexuallyinappropriatebehaviour


Part Three Behavioursofconcernandhowtominimisethem.

Sexually inappropriate behaviour:

• trytoworkoutwhatiscausingthebehaviour.Forexample,thepersonmaywanttogotothetoilet

• trytodistracttheperson

• focusontheperson,notthebehaviour

• gentlydiscourageinappropriatebehaviour

• other.


PART FOUR


Confidentiality and ethics

xZ


Training Manual - Part Four

Confidentialityandethics

Show slide 56

Discuss the ethical issues associated with people with dementia and how they can be supported.

Example:thepersonaheadofyouinthesupermarket 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.

Explainhoweasyitistobreachprivacy.

Example:discussingacustomerinasituationwhere 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:ifyoubelievethatacustomermaynot be capable of making their own financial decisions report this to the manager.


Part Four Confidentialityandethics


Therearemanyethicalissuesassociatedwithdementia.Peoplewhohavedementiaareentitledtothesamedignityandrespectaseverybodyelse.Assistingthepersonwithdementiatomaintaintheirqualityoflifebyrespectingtheirneedsandbestinterestsisparamounttothesuccessofyourinteraction.


PrivacyandconfidentialityareimportantandthepersonwithdementiaisprotectedbylawunderthePrivacyAct1988andPrivacyAmendmentAct2004(www.austlii.edu.au10August2009).Theseensurethatinformationaboutpeopleiscollected,storedanddisposedofinthecorrectwayandthatinformationisonlysharedwithpermissionandonlywithpeoplewhoareauthorised.


Peoplewithdementia;

• needtobeautonomousasmuchaspossiblebutitisoftendifficulttoknowiftheyarecapableofmakingfinancialdecisions

• maybemisunderstoodinretailoutletsandbeperceivedtobeshoplifting

• maynotunderstandqueuingandstayingbehindbarriersinplaceslikebanksandservices

(Wood,2009)(p. 30inParticipant’sWorkbook)



Show slides 59-60

There are many factors that need to be considered when dealing with people with dementia. One of the most important to discuss in detail is ageism.

Askparticipantstolistasmanyexamplesastheycan think of from the press, television and day to day life.

Somecommonexamplesare:

• “Grannybashing”inthepress(blaming some of society’s current economic worries on older adults)

• callingolderpeopleinhospital“bedblockers”

• olderpeople’slivesarelessvaluable

• olderpeopledonothavesexualfeelings

• olderpeopleareresponsibleforgrowing health care costs.

• olderpeopleneedassistancetogetaround

• olderpeoplecannotlearnnewthings

Show slide 61

If you suspect elder abuse call the Seniors Rights Victoria HELPLINE 1300 368 821


Part Four Confidentialityandethics


Factorsthatneedtobeconsideredinclude:

• anageistattitude

• coercion

• takingovertasks

• avoidinginfantilism

• publicembarrassment

• recognisingvulnerability

• talkingaboutpeopleinfrontofthemasiftheyarenotthere

• underminingconfidence

• theneedforconfidentiality

Beingawareofthepossibilityofelderabuse:

• borrowingmoney

• stealing

• intentionalembarrassment

• verbalabuse

• humiliation

• threats

• intimidation




Show slides 62-64

Discuss the telephone numbers and websites on the Useful Information page of the Participant’s workbook,explainingwhenthenumbersshouldbe called and the information that can be obtained from the websites.

Show slides 65-68

Bibliography

Conclusion

Summarise learning:

• Dementia–thehow,what,when and where

• Communicationskills–howtocommunicate with people with dementia

• Behavioursofconcernandhowtominimise them

• Ethicsandconfidentiality

• Usefulnumbersandwebsites

Ask all participants to complete post-test (printed from p.46 )in order to evaluate learning

Ask all participants to complete the Evaluation Sheet (printed from p.47-48).

Thank participants for their contributions.


Part Four Further information


(p. 31inParticipantWorkbook)

For more information

Alzheimer’s Australia www.alzheimers.org.au

Alzheimer’s Association (USA) www.alz.org

Alzheimer’s Information in Community Languages www.alzheimers.org.au and search for ‘community languages’

Better Health Channel www.betterhealth.vic.gov.au

Carers Victoria www.carersaustralia.com.au

Centre for Cultural Diversity in Ageing www.culturaldiversity.com.au

Commonwealth Carelink and Respite Centre www.carersupport.org.au

Dementia Behaviour Management Advisory Service www.health.gov.au/dementia

Department of Health and Ageing www.health.gov.au/dementia

Department of Human Services (Victoria) www.dhs.vic.gov.au

Seniors Rights Victoria www.seniorsrights.org.au

The National Dementia Helpline: FREECALL™1800100500

Dementia Behaviour Management FREECALL™1800699799 Advisory Services:

Aged Care Information Line: FREECALL™1800500853

Commonwealth Carelink and Respite Centres: FREECALL™1800052222

Seniors Rights Victoria: HELPLINE1300368821


Bibliography

Australian States and Territories. Report by Access Economics for Alzheimer’s Australia. www.accesseconomics.com.au accessed 30 July 2009

Access Economics 2009a Making choices Future dementia care: projections, problems and preferences. Report for Alzheimer’s Australia www.accesseconomics.com.au accessed 30 July 2009

Access Economics 2009b Keeping dementia in front of mind: incidence and prevalence 2009-2050. Report for Alzheimer’s Australia www.accesseconomics.com.au accessed 1 September 2009

Alzheimer’s Association (USA) www.alz.org

Alzheimer’s Australia www.alzheimers.org.au

Australian Bureau of Statistics www.abs.gov.au

Australian Institute of Health and Welfare 2007, Older Australia at a glance: 4th edition. Cat. No. AGE52. Canberra, AIHW

Australasian Legal Information Institute www.auslii.edu.au

Better Health Channel www.betterhealth.vic.gov.au

Brooker, D. 2007, Person centred dementia care making services better Jessica Kingsley Publishers, London.

Brooker, D. 2004, What is person centred care for people with dementia? Reviews in Clinical Gerontology 13 (3) 215-22

Butler, R.N. 1969, Ageism: Another Form of Bigotry Gerontologist 9:243-46

DVD 2008 Strangers in a Strange Land: Cultural Competence in Dementia Care. Workplace Learning Initiatives Pty Ltd, Maribyrnong, Victoria

DVD 2008 Local Knowledge A dementia care e-learning resource for rural and remote aged care workers Alzheimer’s Australia (WA) Ltd.

Elder Abuse Prevention Unit www.eapu.com.au


Bibliography


GetTheJob.com.auwww.getthejob.com.au

Goldsmith, M. 1996, Slow down and listen to their voices, Journal of Dementia Care,4(4)24–25

National Dementia Behaviour Advisory Service. 2003 ReBOC Reducing Behaviours Of Concern. A hands on guide. Alzheimer’s Australia (SA)

New South Wales Department of Healthwww.health.nsw.gov.au

Office of the Privacy Commissionerwww.privacy.gov.au

Queensland Healthwww.health.qld.gov.au

Rudd, K. 2010 Building Australia’s future: A sustainable budget for an ageing population. Speech to Australia Day reception. Tasmanian Museum and Art Gallery, Hobart

Seniors Rights Victoriawww.seniorsrights.org.au

Wood, J. 2009, Older Persons Safety. Presentation for Alzheimer’s Australia Vic. Hawthorn

Appendix 1 - Pre and Post Test


TRUE FALSE UNSURE

This page can be printed for distribution to participants for completion prior to and following training.

Inthefollowingtablepleaseticktheappropriatecolumn:true,falseorunsure.

1. All older people get dementia.

2. Dementia occurs because of changes to the brain

3. People with dementia have feelings and emotions.

4 Dementia is progressive and irreversible

5. Having dementia means loss of memory and other changes in ways of thinking and reasoning.

6. It is important to involve the family in decisions about people with dementia.

7. People often have to change the way they do things to work effectively with people with dementia.

8. Too much exercise can cause dementia.

9. Dividing tasks into small simple steps is helpful to people with dementia.

10. It is important to give a person with dementia time to respond to questions.

11. You can say anything in front of people with dementia because they cannot understand you.

12. Talking to people with dementia about familiar things from when they were younger is a good communication strategy.

13. People with dementia are often intentionally difficult

14. People with dementia are affected by your behaviour.

15. It is good to give people with dementia lots of choices to allow them to feel independent.

Appendix 2 - Evaluation Sheet


Pleasetelluswhatyouthinkaboutthetrainingusingthisform.Thankyou!

What area do you represent?

Local Business Community Group / Organisation Sports Club Community Volunteer

Other

Using the rating scale below, please indicate the level of your agreement with the following statements

about the training provided.

1 = Strongly disagree 2 = Disagree 3 = Neutral 4 = Agree 6 = Strongly agree

N/A

Please provide comments in the space provided

1 2 3 4 5 N/A

Additional Comments:

a. I have enjoyed the training session and the training met my expectations

b. The communication and information provided has been good

c. I have felt comfortable and was able to ask questions

d. The training will change my approach in the community

e. The training session was the right length for you

f. Would you be interested in a follow-up session in a few weeks time?

g. Refreshments have been good

h. The venue was good

Appendix 2 - Evaluation Sheet


1. What worked well for your group?

2. What didn’t work so well?

3. Do you have any further comments you would like to make about the training?

This page can be printed for distribution to participants for completion following training.

Documents

Dementia Awareness · Older people are often categorised as inflexible, forgetful and deliberately maintaining ideas and behaviours from their own era. This can lead to them believing