OSW Dementia Carers Handbook

8/12/2019 OSW Dementia Carers Handbook

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The OutlookSouth West book for...

Dementiacarers


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WHAT IS DEMENTIA

It is estimated that there are currently 820,000people with

dementia living in the UK alone and this is set to rise over

the next 30 years. As a carer, you are one of over sixmillion

people in the UK who provide practicaland emotionalsupport

for someone close to you.

Caringfor someone with dementia, can at times be a challenging

and demanding experience. Whilst there are often many

rewarding times, carers also say that there are times whenthey might feel angry, upset or lonely.

This booklet provides lots of practical information about

dementia, its effects and different ways to help reduce levels

of anxiety, stimulate memory and aid relaxation. It also

contains information for you, the carer, about looking after

yourself and ways to cope with some of the emotionalchanges

that you can experiencewhen caring for a lovedone.

As a carer, learning as much as possible about dementia,

its effects and what you can do to support the person you

are caring for, can help you to feel more prepared for the

future and make the right choices. This booklet has been put

together with the help of carers like you and contains lots of

practicaltips and strategies that carers themselves have used

and found helpful .

Whatever your experience is, you are not alone and details

of useful organisations,loca

l and nationa

l support groups,

help lines, chat forums and books are availab le at the end

of the booklet .


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CONTENTS

Introduct ion 02

What is dementia 04

Coping with change 12

Understanding behaviours that challenge 17

Communication 22

Medication 26

Caring fo r t he carer 28

Caring f or yourself 34

Helping Wellbeing through occupation 36

Relaxation fo r wellbeing 44

Diet and wellbeing 46Driving 51

End stage dementia 53

Practical pl anning for the future 57

Recomm ended boo ks 59

Contacts 60

You will also find a separatesheet accompanying thisbooklet.The back of the book containsa personal lifehistory tool called All about me, which you can takeout and use whenever you need it.

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WHAT IS DEMENTIA

Dementiais an umbrella term used to describe a group ofillnesses that cause degenerationof brain cells, leading

to whatis known as cognitivedecline. Thismeans that aperson with dementiamay have difficulties in short-termmemory loss, disorientation,problem solving, reasoning,concentration,perception,communication,emotionsandindependence.

Dementiais progressive in nature,which for most people,means that they will getworse over time.Theway thedementiaprogresses will be different for each person, sono twopeople will have the same experience of dementia,even if they have the same type and are the same age.

Dementia isnot part of thenormal ageing

process.

It is important to acknowledge that dementiais not partof the normal ageing process. However, the likelihood ofdeveloping it does appear to increase with age. 1 in 3

peopleovertheageof65willdiewithsomeformofdementia.

The most common types of dementiainclude:

nAlzheimers disease. nVasculardementia. nDementiawith Lewy Bodies. nFrontotemporaldementia- including Picks disease.Other less common types of dementiainclude: nDementiacaused by Huntingtonsdisease. nDementiacaused by Creutzfeld-Jakob disease (CJD). nDementiaas part of a neurological (brain) illness,

such as Parkinsons disease or multiple sclerosis.


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Common types of Dementia:Alzheimer s DiseaseAlzheimers disease is the most common cause of dementia.In the UK it accountsfor roughly 60% of all dementias.Itis a physical disease affecting the brain. Small clumps ofprotein,known as plaques and tanglesbegin to developaroundbrain cells. Overtime thisdisruptsthenormalworkingsofthebrainandeventuallyleadstothedeathofbraincells.

Short term memory loss and difficulties in finding theright words (aphasia)may be early symptoms.As thedisease progresses the person may experience changesinmood andpersonality,disruptionsinexecutivefunction,such as planning and initiating actionand also in disruptionsin controlof movementand muscles.

For most people the onsetof Alzheimersdisease is gradualand the progression slow and regular. Symptomswillgradually become more severe over time duetoincreased

damage within brain cells.

Vascular DementiaThe most common form of Vasculardementiais multi-infarctdementiawhich follows a series of strokes,or infarcts,whena loss of blood flow damages specific areas of the brain. Thestrokemaybesilent,beingsosmallastopassunnoticed.

If the supply of blood is restricted or stopped,this disruptsthe normal workings of the brain and over time,will leadto deathof brain cells. Thiscan be caused by weakening,splitting,hardeningorclottingwithinbloodvessels,whichinturn, can cause mini strokeswithin the brain. However, noteveryone who hasastrokewillgoontodevelop dementia.

As the d iseaseprogresses theperson mayexperiencechanges in moodand personal ity .


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For many people, Vasculardementiacan begin suddenly.Common symptoms can include short term memoryloss, communication difficulties, confusion, hallucinationsand physical symptoms,such as weakness or paralysis.Unlike Alzheimers Disease, Vascular dementia oftenprogresses in a steplike way, which can include a suddenchange in cognitivefunction and ability.

Dementia with Lewy BodiesThistype of dementiais caused by tiny proteindeposits(known as Lewy Bodies) which form within the brain cells

and disrupt normal brain functioning.

Like othertypes of dementia,Lewy Bodies causes cognitiveimpairmentleading to difficulties in reasoning, memory andconcentration;but notably, it can also cause fluctuatingconfusion, where the sufferer may have intermittentepisodes of loss of orientation and awareness and alsohallucinations and delusions. Lewy Bodies can occur

with Parkinsons disease.

The disease is progressive, with marked differences in therateof progression between individuals. The progressionisfairlysteadyandcarefulobservationoveraoneyearperiod,can give a good indicationof the rateof progression likelyin the coming years.

Frontal lobe dementia (Including Picks Disease)Fronto-temporal dementia (FTD) causes degeneration ofbraincellswithinthefrontalandtemporallobesofthebrain.In a minority of cases, FTD involves cellular degenerationknown asPicksdisease.


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Thisleads primarily to alteredcharacterand behaviouralchanges and theremay not be any otherindication,suchas memory loss or communicationdifficulties in the earlystages.Commonbehavioural changes include a loss ofinhibitions,lack of interest in environment,loss of empathyforothers,over-eating,andobsessiveorritualisticbehavioursand interests.

As the conditionprogresses, brain cell damage is moregeneralised within the brain leading to further cognitivedecline, memory loss and communicationdifficulties. The

progression varies widely and as with other types ofdementia,close observationof the person can help toidentify how the disease may progress.

Dementia and brain functionThe brain contains100 billion nerve cells, which are presentwithin the brain from birth. As the brain has so many cells,in the early stagesof dementia, it is common that only

small parts of the brain are affected.As a carer, you maysee fluctuating levels of ability in the person you arecaring for. For example, one day they may be able toperform a task such as making a cup of teabut the nextday, they may not and vice versa. Whilst this can befrustrating and difficult to understand,it is very commonandisdueinparttobothdiseasedandhealthy partsofthebrain being used.

As the dementiaprogresses, more areas of the brain maybecome affected,or more damage may occur in specificareas. Thiswill increase the impactof the dementiaandmay increase the supportneeds of the person suffering.


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For a person with dementia,even seemingly simple taskssuch as making a cup of tea,can presentdifficulties. Inorder to make a cup of teasuccessfully, the person wouldneed to recognise thirst,decide upon whatto drink, findthe kitchen,find the right componentsand carry out thetask in the correctorder. Due to cell degenerationwithinthe brain, some or all of thesestagesmay be difficult forsomeone with dementia.Theymay not be able to recognisethirst,they may forget how to get to the kitchen or theymay confuse the order and miss out vital steps.

Damage to any of the lobes of the brain will have an impactupon the area of function that the lobe is responsible for.Damage to brain cells in any area of the brain may lead todifficulties in daily functioningand behavioural or personalitychanges that the person has no controlover, often leadingtodifficulties inperformingeven simple tasks.Thisinturn,can cause high levels of frustration and anxiety for theperson with dementia.

The brain is sp l itinto 2 hem ispheres

and contains4 key lobes.

Thebrainissplitinto2hemispheresandcontains4keylobes,the cerebellum and brain stem.Each area of the brain has adistinctfunction.Celldamagewithineachareawillcorrespondtoaspecificimpactuponapersonsabilitytofunction.

Temporal lobe: Containsboth verbal and visual memoryand enables us to learn, storeand recall new information.

Withinthedeeperstructures ofthetemporallobeaspartofthe limbic system,lies the hypothalamusresponsible forregulatingappetite,temperatureand sleep patterns.

Frontal lobe: Thisarea of the brain enables us to initiateand carry out actions.It is also responsible for organising,


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planning and the sortingof information.Thisarea of thebrainisalsoinvolvedwithempathisingwithothersandtheunderstandingof appropriatesocial behaviour.

Parietal lobe: Helps us to process, make sense of andstoresensory information.Brocas area within this lobe isresponsible for speech.

Occipital lobe: Thisarea of the brain helps us to makesense of visual information and informs our perceptionofwhere we are in relationto otherthings.

Cerebellum: Controlsbalance and co-ordinationof voluntarymovementsuch as walking and sitting.

Parietal lobe

OccipitalLobe

Frontal Lobe

Temporal Lobe

Cerebellum Brain Stem


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DiagnosisAs the symptoms of dementiacan develop slowly and arefrequently similar to otherconditionsit can be difficult tomakeapersonsdiagnosis, particularly intheearlystages.However, health professionals are able to observe thepattern of symptoms and perform a few simple tests overa period of time to measure any change. Blood pressureand chlorestorelcan be tested for changes.

MMSEOne of the memory tests commonly performed is the mini

mentalstate examination(MMSE).In the test, a doctorasksthe patient some questionsrelatingto a number of factorsincluding language recall and attention. Usually, an MMSEscore of 20 to 24 indicatemild Alzheimers.Thosescoring10 to 20 are considered to have moderateAlzheimersand ascorebelow10suggestssevereAlzheimers.

Brain scans

A doctorcan sometimesdifferentiate betweenthe diseaseswhichcause dementiaby taking aCT scan or sometimesanMRI scan of the brain. More specialistimaging techniques,suchasSPECTorPETscans areveryexpensiveandgenerallyusedbyscientiststodevelopaccuratemethodsofdiagnosingdementiaandtomeasuretheeffectsofpossibletreatments.

If you or the person with dementiais concerned with the

diagnosis, visit your GP and discuss some of the difficultiesthatarebeingexperienced.Talkingandsharingyourfeelingswillhelp to reduce some of the worries that this may bring.


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Person centred approach Ascarers, we nowunderstandwhatis happening inthe brainbut it is also aboutmaking sure that the person with dementiahas their psychological and emotional care needs metand tailoredto themas an individual. Thistype of approachcaresfortheperson,notthedisease.Therearewaysinwhichthis can be achieved and that is by viewing dementiaasa disability not an end of the road. Carerscan do much toalleviatethe difficulties by providing good emotionalandattachment care, respectingthe persons identity, promotingwellbeingandunderstandingbehaviour.

Finding out as much as possible about the persons lifeexperiences, interests and occupationwill help to form apictureof the person. (Try using the All about me tool atthe back of the booklet). Recognising and building on thepersons strengths will help to promotea sense of self,thus contributing to better confidence and self-esteem.Remember, everytimeyouhavecontactwithaperson with

dementia,yourattitude will have apositiveornegativeeffecton the person. So, time spentwith the person should be apositiveexperience for both the person and the carer. Thiswill enhance wellbeing.

Carers can domuch to alleviatethe difficulties byproviding goodemotional andattachment care.


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COPING WITH CHANGE

Caring and supporting someone close with dementiainvolves dealing with a lot of change and can be stressful.It can taketime to adaptas carers face changes aroundroles, work, finances and lifestyle. Research shows thatexperiencingalotofchange,particularlyoverashortspaceoftimecanhaveaneffectonhowpeoplethinkandfeel.

Types of change carers may experience nChangesin social activities. nFinancial changes. nWork change. nA change in roles and relationships. nA change in residence. nLevels of responsibility.

Caring andsupporting someone

close with dement iainvolves dealing w ith

a lot of change and

Dealing with significant changes in our lives can bringforward a whole host of different feelings and emotions.

Typicalfeelings and emotionsthat many people experiencewhen coping with change, particularly change that issignificant or unexpected,may include:

can be stressful .

nShocknDenialnAngernSadnessnExcitementnGuiltnFrustrationnDepressionnAnxious / worriednResentmentnFear


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Understanding the process of change and lossCopingwith significant changes can take time to adaptto.Thereis no right or wrong way of coping and reactingto change, as we are all individuals. Thereare no set timelimits either and you may feel like you are the only oneexperiencing this situation. However, theredoes appearto be a common process that many people experiencewhen dealing with change and this can be helpful inunderstandingthe associatedemotionsand feelings.

People tend not to go throughthesechanges in a steplikeway but more typically, we tend to oscillateback and forthbetweenthedifferentphases,asweadaptthroughthechange.

Typical phases within the change process Shock and disbeliefReactingwith numbness and disbelief is very common,particularly when a diagnosis is made. Shock providesemotionalprotectionfrom being overwhelmed all at once.

Therecan often be a denial of the reality of the change orloss at some level, in order to avoid the pain or fear. As theshock wears off, it can be replaced with feelings of denialand minimisationoftheactualchange orlosspresent.Lifecan feel very scary and chaoticduring this phase.

Anger and depressionIt is normal to feel anger and frustration. Typicalquestions

at this stageoften include why me/us? Theremay also bebargaining statements such as, If this can just be madeokay,Iwill.......Thisusuallyoccursfromfeelingsofdespair.Being able to release bottled up emotionssafely is importantduring this phase. Often,the realisationof the magnitudeof dealing with a conditionsuch as dementiais fully felt.

Coping with

significant changescan take time toadapt to.


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It is quite normal to experience feelings of depression anddespair. Often,therecan be a sense of wantingto isolateoneself and reflect on things you did before, focusing onmemoriesandpasttimesiscommon.Manycarersdescribeareal feeling of emptinessand loneliness. Being able to talkthroughfeelings with othersthat are trusted can be reallyhelpful and supportiveat this time.

Letting goDuring this phase, thereis more of an acceptanceat thereality and the permanence of the change. Thisacceptance

can also lead to letting go of the past and beginning toprepare for the future. Carersoften say they noticetheystart to feel more positive.

Experimentation and testingThisphase is often when carers start to test out differentwaysofworkingandnewpossibilities.Thereisoftenachangein energy and motivation and carers start trying out new

behavioursandskillsthatsupporttheminmovingforward.

Search for new meaning and integration Carershave reportedthat thereis often time spentreflectingonthechangesthatcoping with dementiahasbroughtandresponses to it.New thoughts, feelings and behavioursbecome stabilizedas part of normal functioning for theindividual. Theremay still be some adjustments required

but integrating and moving forward is key.

Therecan be a range of factors that can influence how wecope and work throughchange. Some of theseinclude: nWhatthe change is and its meaning to us. nAmountof changes experienced.


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nThe amountof supportavailable. nPersonal coping strategies. nQualityof relationships.

Self Esteeem

THE STAGES OF CHANGE7

2 6

3

51

Time4

Stage 1: Shock: Numbness,immobilisation,mismatchbetweenexpectationandreality.Stage 2: Disbelief: Denial/minimisationofthechangeorevent.Carriesonasbefore.Stage 3: Self-Doubt: Realitybites,bringinguncertainty,frustration,angeranddepression.Stage 4:Acceptance:Lettinggoofoldaddictionandbehaviours.Stage 5: Experimentation: Dealingwithnewreality.

Energyasnewattitudesandbehavioursaretested.Stage 6: Search for meaning: The new situation becomesreal. Questionningwhathas happened and why, mismatchbetweenexpectationandreality.Stage 7: Integration: Internalisationand incorporationofnewattitudesandbehavioursintoeverydaylife.


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What the change is - was it expected or unexpected?Evidence suggeststhat we can usually cope better if thechange wassomethingweanticipated.Copingwithdementiais not something we may anticipate and often for many isan unwelcome and unexpectedchange.

Amountof change - research has indicatedthe amountofchange anindividual experiences, affectsabilitytocope. Itmakes sense that if we are dealing with a lot of changes atonce then our ability to cope may be affected,particularlyif they require a large amountof emotionalinput.

It is importantto share our

concerns, feelingsand thoughts.

Amountofsupportavailable-Associalbeings,itisimportantto share our concerns, feelings and thoughts.Being able totalk throughsituations with othersoften helps, e.g. may helpidentifyresourcesandstrategies.Depending onoursituation,it may not always be easy to talk with others.For example,family may be living away, or it may be difficult to ask forhelp, particularly if we are used to dealing with situations

independently.

Personal coping styles - We all cope in different ways.Whatone person finds stressful, someone else may notand vice versa. Our personality may influence how wereact to change and this means that we can differ inour response to change and stressful situations. Whatseems to be important, is making sure carers look after

themselveswhen coping with the changes dementiacanbring. Itcan often behelpfultothink about whatisworkingwell for us and also to look at otheroptionsthat mightsupportus now or in the future.


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UNDERSTANDING BEHAVIOURSTHAT CHALLENGE

Dementiacauses degenerationof cells in different partsof the brain. Over time,this will effect a persons memory,their ability to concentrate,their understandingof thingsand their awareness of the world around them.As a result,this can strongly affect the way a person behaves; theymaybecomeconfused,frightenedandaggressive,theymaynotunderstandwhere they are and behave inappropriately. They

may feel insecure and need to follow their carer around,orthey may forgetwhere they have leftsomethingvaluableand believe it hadbeen stolen.Abehaviour which challenges,canbedefinedasanybehaviourwhichcausesdistresstoselfor othersby its level of frequency, durationor intensity. Thismeans thatanything thatishappening alot,evensomethingassimpleasaskingaquestion,canbecomedifficulttomanage.

Whilsteveryone with dementiais an individual and manypeople will not experience any major behavioural problems,thereare some common types of behaviours that can occurovertime.Theseinclude:

Dementia causesdegeneration o f cel ls

in dif ferent partsof the brain.

n Socially inappropriate/unusual:swearing, shouting,undressing in public using sexualised language.

nRepetitive,ongoingorcontinued:questioning,wandering,shadowing.

n Aggressive,agitatedor anxious: hitting out,carerefusal, self-harm.


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What causes behaviours that challenge?Isitcommonlyacknowledged thatalotofdifficultbehavioursare the result ofthe person trying to communicatesomethingtoothers,such as abasic need which isnot being met. Thebreakdown of brain cell function,means that the personmay not beabletorecognise theseneeds orcommunicatethem in the normal way, leading to some very unusual orchallenging behaviours.

Weallhavebasicphysicalandemotionalneedswhichneedtobefulfilledinorderforustofeelwellandhappy.Theseincludethe need for food, water,shelter,security,human contact,inclusionandthefreedomfromfear,painordiscomfort.

It is common lyacknowledged that

a lot of d if ficu ltbehaviours are theresult o f a person

tryingtocommunicatesomethingtoothers .

Whenanyoftheseneedsarenotmet,orthepersonisunableto communicatethis, it can cause them to feel frustrated,distressed,unhappy or unwell. All of which can lead on tobehaviours which may be challenging. All behaviour, nomatter how unusual it may seem, will have a purpose for

the person carrying it out and trying to work out whatthispurpose is will help reduce the anxiety and distress.

Individual personalityAs well as our basic physical and emotionalneeds, we allhaveourownpersonalitieswhichwillinfluence howwereactto certainsituations.The personalityof the person you carefor willinfluence whatsituations they find difficultto manage

and how they respond. Being naturally shy and preferringonesowncompany willmeanaverydifferent setofneeds tosomeonewhoisnaturallyoutgoingandenjoysbeingingroupsofpeople.Havinganoverallviewofthepersonandwhattheylikeanddislike,canreallyhelptogainanunderstandingofthesortofthingstheymayenjoyorfinddifficult.


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Proactive strategiesThekeytomanaging difficultbehaviours istotryandavoidthem in the first place. The following strategieshave beenusefulformanycarersinreducingtheanxietyanddistressthat can lead to behaviour that can be challenging.

Thinkaboutbasicneeds: Asthepersonwithdementiamaynot be able to communicatetheir needs, it can be helpfulto ensure they can access things like snacks, drinks andblankets or communicatetheseneeds in a way that isappropriateto them.Using pictures,symbols or promptscan help with this.

Use individual personality and language: Having a goodknowledgeofthepersonslikes,dislikes,hobbiesandinterests,history and language can really help to provide a sense offamiliarity and security.

Stick to a routine: Whilstnot alwayseasy, trying to maintain

a regular routine can help reduce feelings of anxiety anduncertainty. The earlier a routine can be established,theeasier it is to follow and be maintained.

Maintaininvolvement: Trytoencouragethepersontostayasinvolvedintheirdailylifeasispossibleandpracticalforthem.Thiscanhelptomaintainselfesteemandindependence.

Use the senses: Research shows that for many peoplewithdementia,creatingarelaxing,sensoryenvironmentcanbehelpfulforreducinganxiety. Gentlelighting,aromatherapyandfabricofdifferenttexturescanbeusefultoengagethesenses.


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Adaptthe environment: For some people with dementia,the cell damage within the brain can mean that commonfeaturesaroundthe house canseem confusing ordistressing.Dark mats on the floor can look like holes, reflectionsinwindows or glass can be distressing,shadows and patternsin wallpaper and carpets can look frightening. Beingaware of how a person may see things and adaptingtheenvironmentaccordingly, such as using a light colouredrug, or drawing the curtainsbefore dark, can help to alleviatesome of theseproblems.

Try assistive technology and memory aids: Memory aidsand assistivetechnologiescan be useful, especially in theearlystages,tohelpmaintainindependence.Detailsoffurthercontacts are at the end of this booklet.

Keep a record: If thereare particularbehaviours that keepoccurringandarecausingdifficulties, keepingarecordcanbe a useful way of understandingwhatmight be causing it.

Encouraging all carers to do the same can help to build upa clear picture.

The reality of someone with dementiaOneofthedefining featuresofdementia,isdifficulties withshorttermmemory.Inparticular,storingandretrievingrecentmemory. As the dementiaprogresses, this may becomemore pronounced and the person willbe lessand lessable

to retrieve recently storedinformation.

We use our memories to help us make sense of the worldaround us and to provide us with information and cluesabout how we should behave and respond. Someone withdementia,who is unable to use recentmemory, may seek


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to make sense of the world by using their long termmemory - eventsand information from the past.Thiscanbe anywhere from yesterdayto 40 years ago, dependingupon the individual and the stageof their dementia.

Thismeans that a persons reality may not be accurate.But however inaccurateit may be,it isstillveryrealand sovery important to them.Tryingto challenge or contradictwhatthe person is saying, even if it is wrong, can causea greatdeal of anxiety and distress.Tryingto empathisewith whatis being said and then distract ontosomethingelse if necessary, can help the person feel listenedto andreduce levels of anxiety. The following is an example of anapproach that many carers have found helpful.

Acceptwhatis being said and acknowledge it,eitherbyagreeing withthem,orbyempathisingoverhowitmightfeel.

Distract their attention if possible, change the subjector

offer something to look at or listen to.

Redirect towards a different activity/area or favouritehobby or conversationtopic.

A personsreality may notbe accurate.


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EFFECTS OF DEMENTIAON VERBAL COMMUNICATION

Asdementiacauses degenerationofbrain cells, thiscanaffecttheareasofthebrain thathelpustoexpresslanguage andalso to understand spoken and written language. Manypeople with dementiawill have difficulty communicatingas dementiaprogresses. It may be helpful to understandsome of the difficulties that the person may have duringtheirjourney of dementia.

During theearly stages: nDrift from topic. nDifficulty in producing relevantsentences. nFind vocabulary shrinking. nTroublefinding words. nApathetic- may fail to initiate contact. nDifficulty following humour, sarcasm. nMay try to correcterrors. nGesturesbegin to reduce. nUsing it or thing insteadof the real term.During themiddle stage: nFrequently repeatsentences. nTalksabout past and trivia. nHas few ideas. nFinding words problematic. nDifficulty naming objects. nSentencesbroken up. nLonger complex sentencesnot understood. nMay fail to greet. nPoor social skills.


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During latter stage: nContentirrelevant,bizarre. nMarked repetition words, phrases. nMay usejargon. nMarked naming difficult. nSentencesfragmented. nLittle relevantlanguage. nSome mute, some repetitive. nInsensitiveto others. nGenerallyunaware of surroundings, content.Notbeing able to make yourself understood,or strugglingto understandwhatothersare saying can be frightening,frustrating and may make the person feel alone or cutoff from others.Thiscan also affect how they feel aboutthemselves, others and how they behave. There maybe windows of realisation when communication is clearand makes sense, especially in the early stages,whencommunication can fluctuate.

A persons ability to communicatecan also be affectedby how they feel. Stress,depression and ill healthcan allimpactupon someones ability to communicate.Ill fittingdentures, an uncomfortable hearing aid or the wrongprescriptionglasses, can also hinder a persons abilityto communicate.

What can help?Tryingto make yourself understood,or trying to supporttheperson youarecaringfortogetacross whatthey need,can be difficult and at times frustrating. The nextpage hassome suggestionsthat othercarers have found helpful.

A persons ab i l ityto communicate canalso be affected byhow they feel.


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n Try to getthe persons attention first,greettheperson - good morning or whata beautiful day.

n Use their name, make eye contact or use a gentletouchon the arm or hand.

nMake sure you can be seen - are you in a shadow - isthereenough light?

n Avoid distractions; keep background distractionssuch as TV, radio to a minimum.

n Be aware of your body language. Non-verbal cluesgive awayfarmorethatthewordsweuse, sokeep bodylanguage friendly and relaxed. Be at the same level - sitdown if appropriate.

n Keep your toneof voice calm but audible. If you arefeeling stressedorangry,trytotakeabreakordosomedeep breathingbefore you start.

n Keep language simple and try not to give toomuchinformation in one go.

n Allow plenty of time to get your message across andgive the person plenty of time to takeit in and respond.

nListencarefully. nUse promptssuch as the car keys or a jar of coffee to

help convey meaning. nLimit directquestionsifpossible. Tryto keep questions

very simple or find a different way to ask. n Trynot to offer toomuch choice at once, this can be

confusing. Keep choices limited to 2 or 3 options. nUse gestureand body language as much as possible

to help supportwhatis being said.

ActivelisteningAttimes,it may be very hard to understandwhatthe personwith dementiais saying. Thiscan lead to them feelingfrustrated and cut off from othersaround them.Even if


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someone has very limited communicationability, by beingsupportive,offeringencouragementandactivelylistening,youcan help them to feel listenedto and connectedto otherpeople - even if you find it hard to understandwhattheyare trying to communicate.

Acknow ledgewhat is being said by showing the personyou are listening.Maintainingeye contact,nodding, smiling,or using gentle physical contact if appropriate,can all helpthe person feel that you are listening.

Repeat back phrases, words or noises to the person.Thishelps to let them know you are listening and tryingto understand.

Use your knowledge of the person to support theircommunication.Look for non-verbal clues; thesecan helpyou make sense of whatmight be being communicated.

What to talk about?Damagetodifferentareasofthebrain,canmakeitdifficultfor some people with dementia to engage in normalconversations. They may find it hard to initiate aconversationor discussion, they may find it difficult totalk about certainsubjectsthat they may not rememberorunderstand,orthey maystick tocertaintopicsthattheyfeel comfortablewith. As the carer, you may need to find

promptsand key themesto help the person communicate.Thiscan be done by exploring the persons life history,hobbies and interests. (All about me tool at the back ofthe booklet).

As a carer, youmay need tofind promptsand key themesto help the person

communicate.


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WHEN SHOULD MEDICATIONBE USED?

Theremaybetimeswhenmedicationisprescribedappropriatelyforthepersonwithdementia.Thiswillneedregular reviewingandmonitoring.Medicationwillbeassessedforeffectivenessand any changes in medicationwill fall within the BritishNationalFormulary guidelines and policies.

Medicationshouldbeavoidedunlessitisabsolutelynecessary

- always consider otherop

tionsfirs

t.

Medicat ionshould be

avoided un lessit is absolutely

necessary...

Theremay be times when the person with dementiaisagitated, distressed,experiencing moods, hallucinationsand possible psychosis. All these types of behaviourshave ameaning. Itcouldbethattheperson maybeinpain,constipatedor dehydrated.It may be that the person hasan infection or has had a mini-stroke/stroke.Theremay betimeswhenthepersonhasnotbeentouched/huggedortheyare in a room with toomany people. Considerthe personsdentalneeds and keep an eye on how much sleep theperson has had.

It is always a good idea to consider alternativestrategiesto medication. For example, engage in meaningful andstimulating occupations,talk about the persons life story,reduce light and noise, consider environmentlayout and

think about the number of people needed to meet thepersons needs.

Ifmedicationisprescribed,it isgenerally given asalowdoseand increased slowly, whilst being monitoredregularly foreffect and side effects.


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Some side effects of medicat ionBeing aware of some of the side effects can help youmonitor the persons behaviours. For example:

nWorsened confusion and aggression nIncontinenceand/or urinary retention nVertigoor dizziness nGastro-intestinaldisturbance nHeadaches nNausea nHeartpalpitations. nExcess sedation nFallsIf you are concerned about the persons medicationandthe amountof prescribed drugs, speak to your GP or yourlocal pharmacist.You are entitled to as many visits as youwish with your pharmacistto discuss medicationbut also,the best method of dispensing that is suitablefor you and

theperson withdementia.Therearemanyaidstohelpwithdispensing medication. Thesehelp with maintaining thepersons independence.


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CARING FOR THE CARER

As a carer, you are one of over six million people in the UKwho provides practicalandemotionalsupportforsomeoneclose to you. Looking after a loved one with dementiacanoften be very difficult as the natureof dementiais complex,unpredictableandprogressive. Theremaybemany reasonswhy you have found yourself looking after someone youcare for - because you love them,you feel you have a dutytoo,because youfeelyouhavelittlechoice.

Caring for someoneclose to dement ia

can be d istress ingand is undoubted ly

hard work .

Caringfor someone close with dementiacan be distressingandisundoubtedlyhard work. Many carers reportthat theyfeeldistressedbecausetheirlovedonedoesntappeartobethe person they once were, that the person with dementiasometimes acts strangelyor becomes agitatedeasily andthiscanbedifficulttocopewith.Itisimportanttounderstandthat thesebehaviours are part of the persons dementia

and althoughit can be very frustrating they are unable todo anything about it.

On being a carerBeing a carer, is just one part of who you are. Many carers

juggle a variety of roles such as work and looking after a

family. Being a carer often means having to balance themany different roles you play and sometimes this can feel

really difficult. In fact, many carers feel uneasy about thechanges to their role that looking after someone withdementiabrings. Commonconcerns carers have include: nChangesto the relationship. nIncreased levels of responsibility. nFeelings of not being able to cope effectively.


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nWorries about not being able to cope financially. nFeeling like you are the only one in the situation.Caring and stressCaringfor someone close with dementiacan be stressful.Thereare a lot of new tasks,changes, responsibilitiesthatcarers and their families have to face and this can causeconflicting emotionsand can feel frighteningat times.

What is stress? Everyone can experience stress at certaintimes in theirlives - often due to eventsthat are beyond their control.Experiencing stress,does not mean that a person is weak.Informing ourselves about stress and how to recognise itcan be helpful in managing it more effectively, as well ashelping source appropriatesupportwhere necessary.

Stresscan be described as a reactionto a threat. Thisisan inbuilt response that humans and animals have when

faced with stressful situations and it is called the FightorFlight response. Consideredaprimitivesurvival mechanism,fightorflightwasprobablycrucialforourancestors,frequentlyconfrontedby life threateningevents.

The human body is designed to respond to stress on aphysical level. The in-built reactionis designed to preparethe body to act quickly and a release of hormones including

adrenaline, allowing us to fight our corner or run away.Evenwhenthethreatisanemotionalone,thebodywillstillreactin the same way, causing us to experience a range ofdifferent sensations.

Experiencing

stress, doesntmean that a personis weak .


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Stressin small amountscan be helpful and is an essentialpart of life. For example, it can motivateus to get on withthings and keep us alert to danger. However, experiencingstress over a long period of time,or having lots of sourcesof minor stress,is not good for our healthand can have aneffect on our overall wellbeing.

Beingabletorecogniseour own stressors

can be helpfu l instopping small issues

build up into b iggerprob lems.

Recognising stress Caringfor someone with dementiacan be physically andemotionallydraining, particularly if you are coping a lot onyourown. Whenyouarelookingaftersomeoneelse,itisalltooeasytonotthinkaboutyourownhealthneeds.Sometimes,wemaynotbeaware thatwearefeeling stressedandputfeelings down to otherthings,such as being tired or busy.Being able to recognise our own stressorscan be helpfulinstoppingsmallissuesbuildupintobiggerproblems.

Youmayrecognisesomeofthesymptomsoutlined.Ifyouareexperiencing someofthem,it isimportant tolookathow you

canreducetheamountofstressyoumaycurrentlybefeeling.

Being able to recognise signs of stress is important, tohelp understandhow stress can affect the body and thatthereare ways to help reduce the amountexperienced.Recognising stress is the first stepin helping to manageit.Looking after basic needs, such as eatinghealthily andregularly, including abalance offoodscontainingvitamins

andnutrients, takingsomegentleexercisetohelpmobility,being able to get good quality sleep and taking some timeout - no matter how small, are fundamentalin keeping thebatteries toppedup.


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Some of the key signs of stress to look out for:

Feeling tense or on edge a lot o f the time.

Difficulty in sleeping or relaxing and feeling tired.

Not being able to make decisions or concentrate.

Being irritable, impatient or agitated.

Headaches, back pain, muscles ache, stomach pains.

Smoking or drinking more.

Eating more or not feeling hungry.

Wanting to cry.


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Tips for dealing with stressExperiencing stress can be really hard and draining andstresscan often make you feel like you are losing control.Some stressful situations may be beyond our control.However, thereare things you can do to help manage andreduce levels of stress and the effects that it can have.

Take regular breaks - a short rest period during the day orweek can help to relieve pressure and refresh your mindandabilitytocope. Breaks,littleandoften,canhelptore-chargebatteries.Tryto continueto do things you used to enjoyandgetpleasurefrom. Listentosomemusic,readamagazineor book, go for a walk, plant some flowers...

Eat healthily and exercise - it is important to eatregularmeals that provide essentialvitamins and nutrients. Gentleexercise in helping to keep joints mobile and the bodysupple, is also important in maintaininghealth.

Accep tpractical help - sometimes it is not practicalorpossible to carry on doing all the care yourself. Askingfor help is not a sign that you have side-steppedyourresponsibilitiesor that you cant cope, in fact,it is a smartmove to ensure you are equipped to continueproviding thelevels of care that you have thus far. Having some extrahelpwith tasks and activities can help the caring relationshipandgiveyouabreaktohelprechargeyourbatteries.

Challenge negative thoughts and self doubt - dont allownegativethoughts to overtakethe way you think. You canuse the following techniquesto check unhelpful thinking: n Identify the situationthattriggeredthenegativethoughts

e.g.Dadkeepsphoningtosayhiskeyshavebeenstolen.


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n Identifytheemotionsthatyoufeltinthesituatione.g.anger, frustration around repeatedcalls from father.

nWritedowntheautomat

icthoughtsthat

youexper

ienced

when you felt the emotions.E.g. I am awful to respondsharply to dad.

nIdentifytheevidence thatsupportsthesenegativeorhot thoughts.E.g.Okayitsthetwentiethtimetonightand I am really tired

n Identify the evidence that does not supportthe hotthoughts.E.g. Other days I cope really well

n Now, can you identify fair, balanced thoughtsaboutthesituation.E.g.Itslate,Imtired,butIamonlyhuman,maybeIcanthinkofawaytomakethekeysmorevisibletodad

nFinally,observeyourmoodnowandthinkaboutwhatyou are going to do. E.g. I am feeling a bit calmer and Iwill look at this tomorrow.

Breakdownproblemsintobitesizebits-theybecomeeasiertotackleandcanhelptoraiseconfidence indealingwiththem.

Worrytime-haveasetworrytime.Spotaworry.STOP.Postponeit for a set worry time per day, 15 minutes for constructiveworry with a clear start and finish.

Identifyusefulroutines-wherepossible,planningaheadcanhelptoreducestress.Introducingroutineswhereyoucan,willalsohelptorelieveanxietyforyouandyourlovedone.

Relax - learning to relax can help to manage and reducefeelings of stress and anxiety. Focusing on slowing downthe breathinghelps to calm the mind and body. ThereareCDsavailablethroughtheGPthatguideyouthroughrelaxation,or you can get them from the library.


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CARING FOR YOURSELF

It is understandable that when you are focusing on thewellbeingofsomeoneelse,it isoften easytooverlookyourown healthneeds. Your own wellbeing is just as importantas the person you are caring for. Help and supportcancome from a variety of areas, such as family and friends,professionals, organisationsand voluntary sectors.

One of the most important ways you, as a carer, can lookafteryourlovedone,istoensurethatyoulookafteryourself.

Top Tips from carers include: n Tryto continuewithyour own interestsas much as

you can - keeping up with your own interests outsideof the caring role, provides psychological respiteandhelps to maintain your social network.

nUse supportnetworks available - sharing the caringload with people you trust can help to give you some

time,as well as maintainingsocial interaction for yourloved one. Being able to talk to otherswho can supportyou is important too.Takeadvantageof the supportoffered, e.g. family, friends, neighbours, carer groups,churchgroups andclubs. Memorycafesarealsousefulin providing supportto both you and your loved one inan informal and supportiveenvironment.

nTalk- Weallknowthesaying,itsgoodtotalk.Beingabletoshareexperiencesandknowing thatyouarenotalone can be invaluable.

Who can help?The following tableidentifies some supportstrategiesandresourcesfromorganisationsthatcanofferhelpandadvice.


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Resource

Who can provide this?

Who can help?

Resources Who can

provide this?

Community ServicesOffera range of adviceand supportat home.

Assessmentof NeedsFor both your loved one andalso for you - you are entitled toyour own assessmentof needs.

Breaks and RespiteHaving a break, no matter howsmall,canreallyhelptore-charge

the batteries.

Emotional SupportBeing able to talk to someone.

Financial

Ensuring you are claiming theright benefits and are getting allyou are entitled to.

District nurse, healthvisitor,community psychiatric nurse(CPN), continenceadvisor,chiropodist,occupationaltherapist (OT), home care.

Social worker - adult careand support.

Sitters,care supportworkers,day care, respitecare (shortbreaks). SWAPS, CarersBreak,

CarersSupportService.

Carersgroups, counsellors - G.Preferralorvoluntaryorganisationscan provide support,as well asfriends and family.

Departmentfor Work andPensions, CitizensAdviceBureau.


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HELPING WELLBEINGTHROUGH OCCUPATION

What is meant by occupation?Being socially involved is a human need. We all need tobe involved in meaningful occupationor activity to makeus feel useful, which is important to our self esteem,selfworthand overall wellbeing. Occupationor being involvedin activities for a person with dementia, is important tohelp maintain communication, engagementand a sense

of fulfilment.

Occupationcan help thefollowing: nCommunication nDecrease boredom / agitation nBeing involved in daily tasks nMaintainrelationships/ shared experiences nProvide a sense of achievement nMaintainexistingskills and may develop new onesUsing occupation to Suppor t Memory ImpairmentAs you are aware, dementiahas an effect on a variety ofbrain functions - including reasoning, concentrationandshorttermmemory.Occupationcanbeusedtosupportthereductioninability,whilsthelpingtosupportmemory,pastexperiences and daily functioning.

Someoccupationmaybemore orlessappropriate,dependinguponthepersonsstageofmemoryimpairment.Usingyourknowledge of the person you are caring for is important inidentifying supportive activities that will be meaningfulandenjoyable. Someactivitiesmayworkreallywell,whilst


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othersmay not.Dont worry if you try something new andit doesnt work. It may be that it needs to be reintroducedat a different time.The important thing is that you are willingto try various occupationaltasks to find ones that work forbothofyouandareenjoyable tothepersonwithdementia.

It is important to remember, not all occupationalactivitiessuit everybody and the stage of a persons memoryimpairment will have an influence. However, what isimportant, is the process of being involved, ratherthanthe outcome. Offeringlots of supportand encouragement,even if the task isnt complete or perfect,helps to valueand recognise whatthey have been able to achieve, which inturn, will build self esteem,confidence and communicationskills.Herearesomesuggestionsthatyoumightfinduseful.

Using pastmemories / li feexperience -focusing onbuildingmaterialaround a particularinterest or hobby can help inmaintainingcommunicationwithothers.Thethemecanbea

reference point for information,used in distraction and canallow theperson tohaveexpertisearound asubjectarea.

Scaling downactivities -using apersons preferences andhobbies may be used to help provide activities on a scaleddown version. For example, if the person you care for hasbeen a keen gardener or had an allotment, scaling downmayhelptomaintaininvolvementandskills.Havingacouple

of grow bags in the conservatoryor some pots,bulbs andsoil on a small tablethat can be easily accessed regularlyallows the individual to maintain a well-loved hobby andcan be used appropriatelyto distract and redirect.

It is importan tto remember, not alloccupational activitiessuit everybody...


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Choice - it is important for all of us to be able to makechoices, decisions and to express our likes and dislikes.Providing choice inactivities orsimple routines can helptoreduce anxiety by feeling involved and listenedto. Usingpictures,symbols or objectsas promptscan help theperson in communicatingtheir preferences or need.

Providing act iv it iesthat allow a person

to fol low a taskthrough can assist

the feeling ofachievement...

Sequencing -providingactivities thatallowapersontofollowa task throughcan assist the feeling of achievement,as wellas being purposeful. Helping out with routine householdtasks for example, folding laundry, setting the table,puttingaway clothes,dustingare all daily functional skills that weall do and can provide a sense of normality.

Using the senses - activities that link into the senses arecalming andhave acore connectionto apersons emotions.Fragrance, texture, colour and sound can be built intoactivities that you can both enjoy. For example, listeningto favouritemusic, the use of poetry, hymns and natural

sounds or rhythms can help to spark memories, as canaromas. The use of positivetouchthroughhand holding orgentle hand/foot massage, can help to provide emotionalconnection.Rummaging activities providetactile experiencesas well as an aid to communication.

Using the person centredapproach that focuses on theindividuality of the person you are caring for, will help to

build a range of meaningful and engaging activities thatyou can share. Carershave found using the Personal LifeHistoryform, a good starting point in identifying useful andappropriateoccupationideas.


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Walksinthepark/countrysidetalking aboutthe colours, scenery and collectingnaturalmaterialsto make acollage/trayto help focuson the senses. Making a rummage box ofnatural materialsor household objectscanaid memory and communicationas well asproviding tactile experiences.

Tripsout to a garden centre to look at andtalk about the plants,colours, smells. Manygarden centresnow have otheritems such

as books and gifts and can be a calm placeto sit and have a coffee.

Growingseeds, flowers or small vegetableson a scaled down version can help to

keep hobbies and interests going in amanageable way.

Providing a cupboard or drawers to allow aperson to move objects around, tidy up,organise orsort,canhelpinreducing anxietyand provide a sense of purpose.

Helping to focus on an aspect of a hobby,e.g. trains,painting,knitting, building a hobbybox or book. Often,thesecan be used as part

of the accept, distract and re-direct (ADR)techniqueandprovideasenseofcalm.


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The Life story workhelps to ensure that

all care needs arebeing met.

Life story work - such as building a story book togetherofthe persons life, past and presentmay be appropriate.Atthe back of this bookletyou will find an example of apersonallifehistorytoolcalledAllaboutme.Itisareally goodidea to fill this out as soon as possible so that the personwith dementiaisable togive you as much informationthatwillhelpwithcompilingtheirlifestorybook.Itcanalsogiveimportant information to family, friends and healthprofessionals - in fact, anyone who is part of the personslife. Thishelps to ensure that all care needs are beingmet.Thisis a good tool to give to thosepeople who work in daycentres,hospitals,carehomes,volunteersandbefrienders.

Using all this information can provide a useful activity forthe carer and the person with dementiaas it can help inpromptingvaluable memories. Depending upon the stageof memory impairment,building a life story book togethercan help in gathering important information abouttheindividuals experiences, preferences, wishes and desires.

Thiscan be shared with otherswho are involved or maybecome involved in the care and can assist in gaining anunderstandingoftheuniquenessofthepersonwithdementia.

A life story book can help to:

nAid reminiscence. nHelp the person talk about eventsin their life. nDocumentthe persons wishes and dreams. nRecord eventsfrom past,presentand future. nFacilitatecommunicationand information between

the person, carer, family, friends and care staff . n Provide a tool that can help othersinvolved in care

get to know and understandthe person. nTravelwith the person to aid communication.


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Tipsfor creatinga life story book nAscrapbook,photoalbumorA4folderareeasytouse

and add too.

n Personalise the cover so it is easily recognisable tothe person.

nSortinformationintocategories-places,people,events. n Use photographs,birth certificate, celebrationcards,

postcards,leaflets,newspaperarticles,magazinepictures- anything that is of interest to the person.

n Put photographsetc in dateorder, write the placename and record names of people in the picture.

n Where appropriateinvolve the person and othersincompiling information about their past,whatthey liketo do today and wishes for the future. Thiscan all berecorded in the life story / memory book.

nLife story / memory books can be used regularly andupdatedas significant eventsoccur.

Occupationaltasks for a person with dementiamay need

adapting,depending upon the stageor progression of thedisability.Earlierstagesofdementiamayneedoccupationalactivities that involve a higher level of cognitiveability andskills. Occupationin later stagesof dementia,have moreof a focus on kinesethic skills or sensory ability - touch,smell, sound, sight.However, appropriateoccupationwilldepend on the individual. The key to any occupationaltaskis that it provides pleasure and a sense of calm for the

person involved.

Cognitive Stimulation TherapyRecentresearch has shown that using your brain can helpyou to maintain your memory. Thisdoes not mean that itcan cure memory difficulties and dementiabut it has been


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shown to slow its progress as well as increase qualityof life and wellbeing. Cognitivestimulation is all aboutactivities that use your brain.

People with dementia,should be given the opportunity toengage in a variety of cognitiveactivities. Thishelps tostimulate some areas of functioning impaired by thedementia,for example - memory, use of language andexecutive function.

An activity shou ldbe chosen by the

person with thedementia as this w i l lhave a better chance

of success.

Anactivityshouldbechosenbythepersonwiththedementiaas this will have a better chance of success. It should befunandprovokenewideasandthoughts.Cognitivestimulationtherapy always focuses on opinions and thoughts ratherthan facts.Thiswill help to maximise the persons potential,build andstrengthenrelationshipsandempower thepersonratherthande-skill. Itisbesttoofferactivities thatdontneedto be completedin an exactor correctmanner. Traditionalpuzzles like crosswords and suduko are not usually suitable

for people with dementia.

Some suggestions for cognitivestimulation: nDiscussions nStorytelling nSinging nNumber games - dominoes nBoard games nCardgames nNaming objects nRemembering landmarks nListeningto a story/poem nSound puzzles nStimatinggames


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Earlier Stages Possible Activities

Thought processes involve complexity

and the ability to focus on completionof

goals, deal with multiple stimuli, make

decisions, form opinions, and express

choice. Ability to look back and plan

aheadaswellasworkingwithothersand

havingawideviewbeyondtheself.

Thoughtprocesses become more con-

crete with a decreased ability to dealwith multiple stimuli. A sense of the

wider world is becoming decreased

with more focus on the self. Working

alongside others is more comfortable.

Symbolic activities focusing more on

long term memories, feelings and

relationshipsare key.

Games, word searches, quizzes,

reminiscence, cognitive stimulat ion

therapies of various types, pu zzles,

discussions, work type acti vity, end

produ ct work , exercise, competitive

tasks, sing ing , reading , rhymes.

Reminiscence, music, poetry, dance &

movement, art & craft, drama, hymns,seasonal linked tasks.

Later Stages Possible Activities

There is more of an emphasis on the

self and the needs of othersare less

appreciated.The ability to engage with

theworldthroughlanguage isdeclining

and tasks require simpler processes

for achievement.

In the absence of cognitive skills,

understandingbecomes more focused

on sensory and motorfunctions.One-

to-one engagement and activities

promotingphysical, sensory and motors

skills are welcomed.

One step tasks, exercise, sequencing

- stacking, folding , rummaging , pets,

dolls, wiping, polishing, soft toys,

singing, massage, positive touch,

rocking, activities with sound, tex ture,

smell, touch, talking books.


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RELAXATION FOR WELLBEING

We all need time to relax. Relaxationis important for bothyou as a carer and for the wellbeing of the person whomyou are caring for. Being able to have some time out to enjoyactivities and hobbies, can helpinmanaging stress as wellas keeping a sense of identity.

A person who experiences memory impairmentmay havedifficulty in communicatingwith otherseffectively; due to

the physical affects that dementiahas on the brain.

As dementiaprogresses, more areas of the brain becomedamaged which will have an impacton the persons ability -forexample, inholding information,responding toinformation,making decisions, or getting needs and wants across.However, a persons ability to connecton an emotionallevel prevails at all stagesthroughoutdementia.

Research ind icatesthat working with

the senses can aidemotional wellbeing.

Helping to create relaxing communicat ionThereareavarietyofwaystohelpcreateasenseofwellbeingandrelaxation.Researchindicatesthatworkingwiththesensescanaidemotionalwellbeing.Usingsound,touch,smellandsightcan help in reducing agitation and anxietyand createa sense of connection.Working with the senses can beparticularly helpful when verbal communication language

hasbecomedifficultforthepersonwithmemoryimpairments.

Focusing on the senses aids relaxationand communication,as thereis a direct link to the limbic system of the brain.The use of smell, positivetouch,music and the use of colourorsoftlighting,can help to createacalming atmosphere and


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helptoestablishlinkstoroutinesduringtheday.Forexample,this can help to prepare for sleep, or to make personal careroutines,suchascuttingnailsmorepleasurable.

Music - memory and communicationcan be sparkedbyplayingfavouritemusic orsongs fromthepersonspast.Singingoldsongs,rhymes,carolsandhymnscancontributetoa sense of wellbeing and be enjoyable. Calmingmusicthathasagentlerhythmorrelaxing soundssuchasnaturesounds, e.g. bird song or watercan promoterelaxationaswe all have certain sounds that resonatewith us, linking

to our core emotionsand memories.

Aroma -hasadirect linktotheolfactory bulb inthebrain.Favouritearomas can help spark a memory and provide asense of familiarity and comfort,e.g. flowers, perfume, after-shave or a smell associatedwith a role. Certainsmells havevery strongemotionalassociations,e.g. smell of fresh bread,freshly cut grass, bonfires and mulled wine takeus back to

ourlongertermmemoriesthatarefamiliarandcomforting.

Sight - creatinga calming atmosphere using soft lightingorhavingsoftcoloursinanareaoftheenvironmentcanhelptoprovideafeelingofsecurityandreduceanxietyandagitation.

Touch -exploring different texturesthroughthe use of arummage bag can help to provide gentlestimulation and

links to past memory throughfamiliarity of objects.Usinggentle massage on hands and feet for example, conveys asense of comfortand provides reassurance. Appropriategentle touchhas been shown to have a physical effect onthe body and mind, throughcalming the body systemsand helping us to feel relaxed and contented.


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DIET AND WELLBEING

Eating wellDementiacauses damage to brain cells, which over time,can affect the way a person eats.Theymay not recognisethat they feel hungry, or may believe they have alreadyeaten,or they may forget that they have eatenand wantmore food.

Over time,dementiacan cause chewing and swallowingproblems. A sore mouthor gum problems can make eatinguncomfortableand may affect a persons willingness toeat.Having a check up with the Dentistis a good idea tomake sure thereare no problems.

It is importantto try and help a

person with dement iato maintain a

healthy, balanceddiet...

In addition,people with dementiamay develop othereatingand drinking behaviours such as difficulties in remaining atthe tablefor the durationof a meal or disliking certaintastesortextures.Theirtastesmaychange,causingthemtodevelop

aliking forfoodsthey did not previously enjoy orthey maydevelopasweettoothorpreferspicyorsaltyflavours.

Speech and language therapists have specialistknowledgein swallowing, eatingand drinking difficulties caused bydementia.Dietitianswillprovidespecialistadviceonmaintainingadequatelevels of nutrition and hydration and enhancingappetite.If you have any concerns regarding swallowing

or nutrition, ask your GP to make the referral to your localspeech and language therapy or dietetics department.

It is important to try and help the person with dementiatomaintainahealthy,balanceddietinawaythatiscomfortablefor them.As dementiacan make people less active,many


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people find that they are not as hungry as before and maynot feel like large meals.

A personal life history, detailing preferences with regard tofoodanddrinkisinvaluableinproviding informationtoothersinvolved in the care. Thislife history should be on hand toguide all concerned in their care, e.g. day care centresorhospitalstaff.

Here are some suggestionsfor encouraging healthyeatingthat many carers havefound helpful: n Tryand encourage the person with dementiato be

involvedwith choosing theirfoods asmuch aspossible. Ifthisisntpossible, thenuseyourknowledge ofthingstheyhaveenjoyedinthepasttotryandencourageeating.

n Many people prefer several smaller, snack type meals,ratherthan one or twolarge ones. Cutportionsin half orintothirdsandserveonsmaller plates,soit doesntseemtoooverwhelming.

n Foods that can be eatenwith fingers may be moresuitableforsomepeople,tohelpthemfeelmoreincontrolof how they eat.Sandwiches, vegetable sticks, smallslices of quiche, sausage rolls, cheese and crackers orpiecesoffruitcanallbeeatenwiththefingers.Ifswallowingproblemsareanissue,thespeechandlanguagetherapistshouldbeconsultedtoascertainthesafestfingerfoodsfor thosewith swallowing difficulties.

n Some people prefer foods with a softertextureor mayhavebeenadvisedbythespeechandlanguagetherapisttotakeasofter diet as this willbesafertoswallow. Soups,stewedfruits, milk puddings and casseroles can beuseful but the speech and language therapist anddietitian will be able to provide more detailed advice.


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Some people withdementia may not

recogni se the feelingofbeingthirsty andcanbecome dehydrated.

Staying hydratedSome people with dementiamay not recognise the feelingof being thirsty and can become dehydrated.It is importantto ensure that the person has plenty to drink, as beingdehydratedcanlead todifficulties concentrating,lethargy,headachesandincrease theriskofurinarytractinfections,whichcanmakethepersonfeelveryunwellandcanleadtoa high temperature,disorientationand unusual behaviour.

Encouraging someone to takeregular sips of a drink thatyou know they enjoy can help to maintain good levels ofhydration.Theymay prefer to use a strawor a mug or cupwithahandleinsteadofaglass. Again,iftheyhaveswallowingdifficulties, the speech and language therapist should beconsultedwith regard to the safest options.

People all have different tastes and you may find that theperson you are caring for develops new tastes for things,such as very sweet drinks, sour drinks or disliking hot

drinks. You may need totry afew different things untilyoufind one that the person enjoys.

Here are some suggestions: n Plain watercan be made more palatableby adding

some fresh fruit juice, such as orange or lemon if theperson enjoys sour flavours.

n If the person only seems to enjoy very sweet drinks,try diluting them slightly or sweeteningjuices withhoney or fruit sugars.

nMilkshakesmadewithwholemilkoryogurtandfreshfruit can be hydrating as well as nutritious and may bepreferable to a large meal at times.


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Health and wellbeingA person with dementiamay not be able to communicateif something is wrong or they may not recognise feelingsof pain or discomfort.One of the most common signs ofa person feeling unwell or in pain, is througha change inbehaviour, such as increased levels of agitation.If younoticesudden changes in behaviour, the person may beexperiencing some pain or discomfort.Tryingto keep arecord of how and when the behaviour occurs, can helpyou get anunderstandingof whatmight be causing it.Thiscan be useful if a visit to the GP is needed.

Whilstmanypeoplewithdementiacandislikehavingbathsor showers, it is really important to encourage regularwashing and nail care. Some people prefer to use a bowland jug for a wash, or may prefer to use the facilities outsidethehouse,such asthedaycentre,thelocal swimmingpoolor getting hair washed at the hairdressers.

Clothing and footwearSome people can become more sensitive to how thingsfeel. Buckles, buttons, fasteningsor tight waist bands orbra straps may cause discomfort.You may find that theperson removes certainitems ofclothes,orpulls andtearsat their clothes.Some people may prefer clothesin a slightlylarger size or with velcro fastenings that may be morecomfortable,or in a different fabric.

Poor fitting or uncomfortableshoes can cause difficultieswith mobility and may contribute to falls. Weightloss, badcirculation,bunions and poor nail healthcan all contributeto foot pain. Making sure that footwearis comfortableandwell-fitting can help to enhance mobility. Keeping an eye

It is really importantto encourage regularwashingandnailcare.


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on foot care is an important part of personal care and aregular check-up with a podiatrist or nurse is important ifthereis Diabetes or otherhealthconditionspresent.

Regular checksCommunicationaids, such as dentures,glasses or hearingaids can easily become worn and ill-fitting, this can inhibitcommunication,so regular checks and maintenancecanbe helpful. Mobilityaids such as walking sticks or framescan also need regular services to ensure they are workingwell for the person who needs them.


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CAN A PERSON WITH DEMENTIASTILL DRIVE?

Carersandthepersonwithdementiaalwaysfindthisaveryhard issue to deal with as a diagnosis of dementiais notitself necessarily a reason to stopdriving. Whatmatters,frombothalegalandapracticalpointofview,iswhetherornot the person is still able to drive safely.

For experienced drivers, driving may seem to be a largelyautomaticactivity. In fact, driving is a complicated taskthatrequires split-secondcombinationof complex thoughtprocesses and manual skills.

When the person receives a diagnosis of dementiaandwants to continue to drive, they must inform the DVLA(Driver and Vehicle Licensing Agency). Once the DVLAhave been notified they will contact the consultant or GP

for more medical information.A decision will be made asto whether the person can continueto drive, based on themedicalreport.TheDVLAmayaskthepersontotakeadrivingassessment.If the person does not inform the DVLA aboutthediagnosis,itmayleadtoafineofapproximately1,000.Family members are encouraged to write to the DVLA ifthey are worried about the persons driving abilities - theycan requesta medical investigation.

If following a medical enquiry, the DVLA decides that theperson can continueto drive, they will issue a new drivinglicencethatwillbevalidforalimitedperiod.Thisisgenerallyone year but can be up to a maximum of threeyears. Thepersons conditionwill be reviewed at leastonce a year.

When the personreceives a diagnosisof dementia and

wants to cont inueto dri ve, they mustinform the DVLA .


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InsuranceOnce the DVLA have been informed, the person needs tocontact their insurance company. If they do not, theirpolicy may become invalid. It is a criminal offence to drivewithout at leastthird party cover.

Giving up drivingManypeoplewithdementiachoosetostopdrivingbecausethey begin to find it stressful or they lose confidence. Aperson should consider stoppingdriving if:

nTheyfeel less confidentor more irritatedwhen they drive.

nTheyfeel confused if thereare road works,for example, on a familiar route.

nTheyfeel worried about having an accident.Contactdetails are at the end of the booklet.


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END STAGE OF DEMENTIA

Manycarersfindit hardtothink,letalonetalkabout dying.Thiscan be difficult and distressingbut with information,you will be better informed and prepared to make the rightdecisions for the person with dementia.

End stagedementiais the last part of the journey that thepersonwillmake.Remembering thateachpersonisauniqueindividual and their experience will be different,it is likelythat the persons memory and physical side of the disabilitywill become more obvious. Particularly,theperson will needmorehelpwithpersonal care andcontinencemanagement.

Laterstill,the person may need total dependence - wherethey need help with eating,swallowing, assisting to thetoilet and dressing. As a carer, you are likely to have spentyears developing vital knowledge and caring strategiesto

help you meet the needs of the person who you care for.Your awareness and sensitivity to the subtle changes thathappen over time, can help you understandyour lovedones behaviour, facial expressions and body language.Knowing thesesigns can help you and othersprovidegood, appropriatepalliativecare.

Who can make medical decisions?

People with dementiaare presumed to have the capacityto make their own decisions until this is proven otherwise.Mentalcapacityis always impaired at the severe and endstageof the journey of dementia.It is thereforeright thatanother person will be asked to make decisions aboutmedical care on behalf of the person.

End stage dement iais the last part of thejourney the personwill make.


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The Mental CapacityAct2005The MentalCapacityActallows people to express a wishabout how they would like to be treated should they losecapacity.Thisincludes refusing certaintreatments suchas artificial nutrition and hydration.It would not allow therefusal of basic care. It also gives better legal protectionto vulnerable adultson a range of issues, including medicaltreatment.Itisnolongerpossibleforprofessionals tomakeassumptionsaboutqualityoflife-theyarelegally requiredto determine the best interests of a person who lackscapacity.Thiswouldbetofindouteverythingpossibleabouttheir wishes and feelings and to make reasonable stepstoinvolvecertainpeopleinthedecisionmaking process.

It is important

to discuss endof li fe care at an

early stage o fthe disabil ity...

It is important to discuss end of life care at an early stageof the disability, so as to enable the person with dementiato make the right decisions around their future care andtreatment.Atthisstage,thepersonwithdementiaandtheirfamily/carer can discuss some of the potential difficulties

more calmly, as thereis no immediatecrisis to deal with.Thereisalso timetoaskquestionsabout futureneeds andinvolve certainpeople interestedin the care and wellbeingofthepersonwithdementia.Manypeoplewhohavedementiastillhavedreamsandgoals thatwillbearanimportanceontheir quality of life. Thesemust be takeninto considerationwhen planning the persons care.

Different levels of careAnacutelevelofcaremeansthateverythingthatisavailablewould be used to maintain life, for example; life support(ventilator), IVantibiotics,transplants,blood transfusions,x-rays and scans. The person would usually be cared for inan acute hospital.


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Activetreatment aims to prolong life but not maintain itindefinitely, through life supporttechnology.The level ofcare would include electivesurgery, blood tests, x-rays,antibiotics and blood transfusions. The hospital doctorwould decide if treatment is appropriate.

A palliativelevel of care aims to keep the person comfortableand pain free but not to prolong life. Thisapproach aims togive the person the best quality of life possible but doesrecognise that the person will eventuallydie as a result ofthe disease they have. Throughoutall of this, the personshould be treated with the utmost respectand dignity.Thisapproach is aimed at keeping the person comfortable,ratherthan curing them.Testsand a range of medicationswould be used to help with any symptoms that the personwas experiencing. This level of care would usually bedelivered in the persons own home or in a care home. Thiswould be supportedby the persons GP and specialiststaffsuch as a district nurse.

To help you appreciate some of the dif fi cul ties thatcarers may have in making the right decisions, hereare a coup le of scenarios.

If my motherhad a strokeand couldntswallow, or she washaving difficulty swallowing due to the effects of end stagedementia,wouldshewantafeedingtubeputinherstomach?

If my father with dementiahad a heartattack, would hewant to have treatment to try and make his heartstartagain if it stopped?

... the personshould be treatedwith the utmost

respect anddignity .


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In the last few day sof the persons l i fe

it is imperative thatthe person and their

families/carersreceivehighstandards

of care.

The dying process Inthe final stagesofdementia,difficulty inswallowing, weightloss and muscle weakness, will point to the fact that thegeneral healthof the person is getting worse. The personwith dementiamay become disinterestedin food and fluidsatthistime.Thesemaybesigns that the body ispreparing fordeath.Ifthepersonwithdementiahasothermajordiseasessuchas heartand lung disease, they may die because of thesediseases before the final stagesof dementiaare reached. Atthisstage,anyinfectionsthatthepersonmayexperiencemaycontinuethroughoutthesefinalmonthsandwillbetreatedaccordingtotheagreedgoalsofcarefortheperson.Therewillcome a time when the person will no longer eator drink andmaycontinuetoliveforafewdays,sometimeslonger.

Gradually,overthefinalhoursordays,thepersonmayslipintoacomaandbeunabletorespond.Thismaybedifficultforyoutocometotermswithbutoncethepersonisinacomatheywilleventuallydiewithinashortperiodoftime.

Intheselastfewdaysofthepersonslife,itisimperativethatthepersonandtheirfamilies/carersreceivehighstandardsofcare.TheLiverpoolCarePathwayincorporatescertainstandards.

TheLiverpoolCarePathwayThe aim of the pathwayis to improve and maintainstandardsofcareinthelastfewhours/daysofapersonslife.Tobeableto

meetthesestandards,improvingknowledgeandqualityofcarerelatingto the process of dying, is imperativetowardsthepersons quality of life. Initial and ongoing assessmentsare key to quality care but also, considering care after deathisimportant.Qualitycarewillincorporatethepersonsphysical,psychological,social,emotionalandspiritualneeds.


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PRACTICAL PLANNINGFOR THE FUTUREA diagnosis of dementia invariably causes a number ofchallenging and complex emotionsfor all thoseinvolved; itcan be a difficult and upsetting time and can creategreatconcerns about the future and whatlies ahead.

Future care planning, where those involved consider theoptionsfor the future and keep a record of the wishes andpreferences of the person being cared for, can be veryreassuring and help the carer and cared for to feel moreprepared and resourced. Future care planning is a verypersonal thing - some people want to do it,othersdont.Discussion with friends, family and your healthcareprofessionals will help you to decide whatis right for you.

Thismeans that someone with dementia,does not auto-matically lack capacityto make decisions for themselves

but they may need extratime,help from people they feelclose to and additionalcommunicationsupportsuch aspictures,symbols and prompts.

Initial discussionThiscan involve friends, family and healthcareprofessionalsand anyone else who is important to the person withdementia.The initial discussion lets everyone get together

and discuss whatsort of decisions might need to be madein the future. For example, supportingthe person withdementia to think about where they would like to live ifthey cannotstayathome,who they would liketolook afterthe dogs if they need to go into hospitaland whatreligiousor spiritual beliefs are important to them.

Future care planning

canbeveryreassuringand help the carerand cared for to feelmore preparedand resourced.


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A Statement of PreferenceThisisastatementofgeneralbeliefsandaspectsoflifethata person values, such as interests, hobbies and religiousbeliefs, as well as information about the persons wisheswith regards to finances, propertyand preferences of carefor the future. Althoughnot a legal document,a Statementof Preference, that records the wishes and interests of theperson with dementia,can be used by family and medicalprofessionals to supportthe decision making process.

An AdvancedDecision to Refuse Treatment(ADRT)An ADRT is a binding refusal of certain types of medicaltreatment, for use at a time when the named person nolonger hascapacity.AnADRTcan bevery helpful,toensurethat the person feels in controland can remain in controleven after they lose the capacity to make decisionsabout particular medical treatment.

Lasting Power ofAttorney

LPA is a legally binding documentthat allows the donorto appoint someone the attorney who they trust tomake decisions about their finances and welfare forthem,if in the future, they are unable to make decisionsfor themselves.

Thereare twodifferent types of LPA: Propertyand Affairsand Finance. You can appointa different person for each

type of LPA, or the same person for both.

TheWelfareLPAallowsthedonortoappointsomeonetomakedecisionsontheirbehalfaboutwelfare,suchaslongtermcareand certainmedical treatment. The Welfare LPA can only beusedoncethedonorhadlostcapacitytomake decisions.


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RECOMENDED BOOKS

Alzheimer s disease:everythingyouneedtoknowGray-Davidson,Frena749920416

AlzheimersfromtheinsideoutTaylor,Richard

AndstillthemusicplaysStokes,Graham

ContentedDementia:24hourwrap around care for lifelongwellbeingJames, Oliver

978009190806

Dancingwithdementia:my story of living positivelywithdementiaBryden, Christine184310332X (pbk.)

Dementia:AlzheimersandotherdementiasCayton,Harry1859590756

ImstillhereZeisel, John

Isthecookerturnedoff?Woolf, Josephineand Michael095441280X

Just love me: my life turnedupsidedownbyAlzheimersLee, Jeanne1557532982

MemoryHandbookAlzheimers Society9781906647049

TellingTalesAboutDementia;ExperiencesofCaringLucy Whitman9781843109419

TheSimplicityofDementia-Aguideforfamily&carers

Hubb Bijssen9781843103219


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USEFUL CONTACTS

LocalAdultCare and Support

Cornwall CouncilHome support,assessments,

services available. 0300 1234131www.cornwall.gov.uk

Al zheimer s Society

Generaladvice & information.

local contact01209 713980

Carers Suppor t Service

(Cornwall)Supportand local groups.

01872 243531

www.cornwallrcc.co.uk

Carers Befriender ServiceHelp with respite.01752847814

Carers Break

Help with respite.

01209 612521

Cruse Bereavement Care

Counsellingsupport.

0172676100

Dementia HelplineDedicatedhelpline for information

and advice.

01872, 266388

[email protected]

Dementia Carers Support WorkerProvides information and advice.

01872 322004

Newquay ICP ProjectLocal projectdeveloping model

of care for dementia.

0172662975

Outlook South WestDementia information,training

and counselling, StressBuster

Courses.

01208871904www.outlooksw.co.uk

SEAP

Independentmental capaci

tyadvocacy .

08452799019

[email protected]

SWAPS

Shortbreak service for people

with dementia.

01209 891888

www.swaps.org.uk

Tremorvah Industries

Equipmentfor home to promote

independence.

01872 324340www.tremorvah.co.uk


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Memory cafes

Bodmin 07771 981181Camborne 01209 713980

Camelford 07867 783728Falmouth 07974 728435

NorthRestormelCMHTNewquay 01726 291212

South CarrickCMHT

Falmouth 01326 434708

NorthCarrickCMHT

Truro 01872356000

Isle of Scilly 01720424028 NorthCornwallCMHTsLaunceston 01566 774425 Bodmin 01208 251446Liskeard 01752 255399 East& WestCaradonCMHTsLostwithiel 01208871196 Liskeard 01579 335226Mullion 01326240709 offer assessment,diagnosis, infor-Penzance 07974728435 mation,supportivecounselling andPolperro 01579 344671 signpostingto otherinterventionStIves 07867783728 and service options.Truro 01872324333Wadebridge 07891840219 Royal Museum Older people

Outreach,For up to dateinformation on local

memory cafe groups visit CornwallCountywebsiteor telephone03001234100

Memory Clinics

North Kerrier CMHTRedruth 01209 881888

South Kerrier CMHT

Helston 01326435860

NorthPenwithCMHT

Redruth 01209 888260

South PenwithCMHT

Penzance 01736 575555

South RestormelCMHTStAustell 01726291212

Reminiscence sessions, training

and loan of resources.01872242784

[email protected]

www.dementiapartnerships.org.ukfind the latest news, discussionforums, newsletters,up-datesonlocal and regional implementationof the NationalDementiaStrategy.

Nat ionalAge Uk

Generaladvice and information.

0800 1698787www.ageuk.org.uk


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Al zheimer s Society

Generaladvice and information.

0845 3000336

www.alzheimers.co.uk

Benefit Enquiry LineFor people with disabilities

and their carers.

0800 882200

Dementia UK

specialistmental health nurses to

provide supportto family carers.

AdmiralNurses 020 7874 7210,

www.dementiauk.org.uk

Downs Syndrome Associat ionGeneralhelp and information.

Helpline 0845 230 0372

[email protected]

DVLA

Telephone0870 600 0301www.dvla.uk/medical.aspx

Carers UK

Nationalcarers organisation.

0808 8087777

www.carersuk.org.uk

CitizensAdviceBureauGeneralhelp and information.

0844 4994188

www.citizensadvice.org.uk

Training and in for mat ionPracticaltips, tools,videos

and a learning zone.

www.scie.org.uk/dementia

AdvancedDecisionsHelp with LastingPower

ofAttorney.

www.adrtnhs.co.uk,

Office of Public Guardian

Help and advice for planning

advanced directives,LPAs.

0845 3302900www.publicguardian.gov.uk

Preferred priorities fo r carewww.endoflifecareforadults.nhs.uk

National Dementia Strategywww.dh.gov.uk/en/.../NationalDe-mentiaStrategy/index.htm

www.e-elca.org.uk

Free e learning toolscovering key

areas of the End of Life Strategy.

www.cks.nhs.uk/dementiaUseful dementia

managementscenarios.

NHS Direct,0845 4647

www.nhsdirect.nhs.uk

Parkinsons Disease Society

Generalinformation and advice.

0808 8000303www.parkinsons.org.uk

The Princess Royal Trust

for CarersGeneraladvice and support.

0844 80043612

www.carers.org.uk


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OutlookSouth West

(Compiled and prepared by Chloe Hickson, Niki Welch and Jo

Documents

OSW Dementia Carers Handbook