A Positive Choice:choosing long-stay - Alzheimer Scotland · 2019-08-08 · into long-stay care can...

Dementia is a blanket term used to describe various disorders of thebrain, all of which result in impairment of intellect, memory andpersonality. This is usually accompanied by changes in behaviour andthe gradual loss of the skills required to cope with the activities of daily living.

This booklet is aimed at those who have been caring at home for afamily member, partner or friend who is now in the later stages ofdementia and where a decision has been made to transfer the personto a care home setting. It does not cover the process of making thedecision about or arranging long-stay care nor how you go aboutchoosing a care home. These themes are covered in anotherAlzheimer Scotland publication, A Positive Choice: choosing long-staycare for a person with dementia (2003). Instead, it looks at the impact of the move on the carer and the person with dementia.

The booklet aims to help carers establish new caring roles forthemselves through visiting and working as partners with care homestaff to help them understand the person with dementia and providethe best possible care in what is likely to be the person’s final home.

Letting Go Without Giving Up:

Continuing to Care for the Person with Dementia

This booklet was written and edited by Jenny Henderson,Palliative Care Development Worker

and

Maureen Thom,Information Manager, Alzheimer Scotland.

Thanks to everyone who read and commented on the draft, particularly the editorialgroup in Dumfriesshire who contributed so much from their own experiences:

Shirley McTeir,Care Manager, CIC Homes

Pheona Malcolm,Deputy Manager, CIC Homes

Margaret Kerr,Carer

Kathleen Balchin,Carer, who came up with the title for the booklet

Isobel Tinning,Carer Liaison Worker, Alzheimer Scotland

Margaret Stuart,Community Psychiatric Nurse

Linda McDougal,Acting Community Psychiatric Nurse

Thanks are also due to colleagues at Alzheimer Scotland: Julie Barron and Gillian Wilson who commented on earlier drafts.

Cover design & photograph by: Alan Cairns,Dumfries

Design and print by: JMK Printers,Linlithgow

Acknowledgements

Section One. Introduction 7

Section Two. Emotions 8

Section Three. The Impact of the Move on the Person with Dementia 12

Section Four. Don’t Leave It Until the Funeral 13

Section Five. Practical Ways to Stay Involved 15

Section Six. Understanding Behaviour 17

Section Seven. Visiting 19

Section Eight. Communication 23

Section Nine. End Stage Dementia 25

Section Ten. Preparing for the End of Life 26

Section Eleven. Conclusion 28

Section Twelve. Further Reading and Sources of Information 29

Contents

Section OneIntroduction

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Letting Go Without Giving Up

experiences of current and formercarers.

When a person with dementia goes intoa residential setting, he or she isentering a different stage of the illnesswhich will mean changes for both theperson with dementia and the carer.While dementia is a terminal illness, it isan unpredictable condition and there isno fixed pattern as to how the illness willprogress. However, although no-one hasthe same journey or path throughdementia, there are common features tothe journey which it may help carers tounderstand and prepare for. These areset out in later sections. Anyonewanting to know more about how theillness may progress in their relativeshould consult the person’s GP in thefirst instance.

The booklet also looks at: the emotionalimpact on the carer of making thedecision to place the person in a carehome; the effect of the move on theperson with dementia; helping carehome staff to understand the person;making visiting more pleasurable;communicating, both with the personand care home staff; coping with difficultbehaviour; and preparing for the end ofthe person’s life.

Even if the illness cannot be cured, wecan still aim to provide the best qualityof life for the person throughout this lastphase of the disease. That aim underpinsthe following sections of this booklet.

The idea for Letting Go Without GivingUp grew from concerns expressed bycarers who felt they were no longerallowed to have a role in caring for theperson they had looked after at homeafter the person entered long-stay care.This booklet is aimed at carers whowant to continue their involvement inthe lives of the people they have caredfor, even if they are no longerresponsible for their day-to-day physicalcare needs.

The booklet will also be of value to carehome staff as it explains the benefitsand ways of involving relatives andfriends in the continuing care of theperson with dementia. If you work in a long-stay care setting, you may alsowant to read Working with Dementia:a handbook for care staff (MacKinlay,2004). This short booklet, written by acarer, describes how dementia affectsthe individual with the illness and askscare staff to try to understand how thenew resident and the carer/relativemight be feeling around the time theresident is admitted. It also describesthe behavioural and communicationdifficulties that may occur and how staffcan develop strategies to deal with these issues.

Some readers will want to read LettingGo from cover-to-cover while othersmay want to refer to particular sectionsas issues arise. We have tried toinclude as many practical tips andsuggestions as possible, based on the

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Section TwoEmotions

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Deciding that someone should moveinto long-stay care can be a verydifficult decision to take. In manycases, this decision is made after aperiod of reflection and investigatingchoices of care home. You have madea choice based on balancing what isbest for everyone involved. In othercases, a crisis of some sort may leadto your relative being admitted to acare home very quickly, withoutgiving everyone time to prepareproperly. Whatever thecircumstances, you are likely to feelthat you are riding on an emotionalrollercoaster. This section explores thecommon range of emotions felt bycarers and suggests some strategies for coping.

GuiltYou may feel guilty that you have notbeen able to keep your relative athome for longer even though youknow that you have done everythingyou could and that the decision is thebest for all concerned. Feelings ofguilt may be particularly strong if youhave promised your relative, a now-deceased parent or a friend that youwould never put them in a carehome.

If the person has problems settling into the home, this will add to your owndistress and feelings of guilt. You maywonder if you have made the rightdecision? In time, the person maybecome unable to communicate withyou or respond to you, and may evenbe unable to recognise you. This can be the most distressingexperience of all.

Feeling guilty for notfeeling guiltyIt can be difficult for carers to behonest about their feelings when theirrelative enters a care home. If youbelieve you are expected to feel guiltyand to admit to anything else wouldseem wrong, then you may not bewilling to say you feel relieved. Thereare no right or wrong feelings. Somepeople feel guilty, some don’t. Some may have guilt put upon themby others.

Possible reasons for guiltand suggestions forcoping:

� You may have had unrealisticexpectations of your ability to cope or the toll that caring would have on you

� You may feel guilty because yousometimes wanted to walk awayfrom your responsibilities to theperson and now you have done so

� You might feel guilty that younever liked the person and theynow seem so helpless; maybe Icould have tried harder to likethem?

� Maybe the person who hasdementia used to criticise you inthe past or always made you feelinadequate, so even now nothingyou do can seem right

� You may have promised the personin the past that you would alwayslook after them at home. Now youhave been forced to break thatpromise.

Most carers have experienced similarthoughts and feelings and, in thecircumstances, they are quite normal.It may help you to talk them throughwith someone who understands – thiscould be a professional, member of acarers support group or a good friend.

AngerYou may find that you feel angertowards the person with dementia forleaving you to cope on your own,even if you have had to take most ofthe responsibility for the day-to-dayrunning of the home, the familyfinances, home repairs, and so on, forsome time.

“You are now responsible for everything inthe house – it’s down to you – finances,repairs, decisions. Even if you’ve beendoing all these things for years you stillrealise you’re on your own now that yourrelative is in a care home.”

The anger you feel may be directedtowards care home staff – if you canno longer care for the person, you aregoing to make sure that the homegets it right.

People need to be allowed to beangry – find someone you cansafely express that anger to; or gosomewhere where you can shoutor "throw stones in the sea".

Grief, Loss, Loneliness &BereavementYou may feel grief at yet anotherchange in your relationship withthe person. Rather than feelingthat the burden of care has beenlifted you may feel emptiness –even if your relative has changedthrough the course of the illness,you will still miss their presence inyour life.

Sense of lossA sense of loss is one of the mostpowerful feelings that carersexperience. Depending on yourrelationship with the person andyour individual circumstances youmay grieve for the loss of:

� the person you once knew� the future you had planned

together� the relationship you once

enjoyed� their companionship, support or

special understanding� your own freedom to work or to

pursue other activities� finances or a lifestyle which you

once took for granted.

LonelinessYou may also feel a strong sense ofloneliness caused by:

� going home to sit on your own � having no one to talk to � seeing other couples� missing the person � feeling on your own

It is important to acknowledgethese feelings and not to feel theonly one who may feel like it.

BereavementEven though your relative is stillalive, you may feel a sense ofbereavement at the loss of theperson they once were and the lossof your relationship with the

person, yet feel unable to mournproperly. There have probablybeen several stages during thecourse of your relative’s illnesswhen you have experiencedfeelings of loss and the periodwhen your relative enters a carehome will mark another type ofloss. This sense of loss may belessened by care home staffrecognising you as the expert inthe person’s care and involving youin the planning and delivery of careto your relative.

Assumptions aboutdifferent types of carersAfter a person with dementiaenters a care home, relativescommonly struggle to adjust tochanges in their relationship withthe person, changes in their roleand changes in the pattern of theirday. The impact of these changeswill differ from person to person.Some might assume that theimpact would be greatest onhusbands, wives or long-termpartners but adult children,particularly those who havecontinued to live with their parent,can also feel a great sense of loss.

Not all caring relationships areloving ones. You may have had adifficult relationship with yourrelative before he or she becameill; the illness and the need for youto take on the caring role mayhave meant that a lot of issueshave never been resolved. Youmay need help to work throughyour feelings through counsellingor therapy – see Section 12 forsources of further support.

When the person goes into long-term care you may grieve atanother change in yourrelationship. The relief which youmight feel initially may be replacedby feelings of loss and grief, mixedup with guilt, which can last for asurprisingly long time. You maymiss the person’s presence andmay experience feelings ofemptiness. You may feel very tired,both physically and emotionally.

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What might help

� Try to take it easy until you feelyour energy levels rise again.

� Give a structure to your daywhich may help you get throughthe difficult early months.

� Not everyone is the same, butdon’t fall into the trap of buildingyour life around visiting theperson in their new home. Youneed to build a new life foryourself which includes thesevisits.

� Talk about your feelings to anunderstanding professional, toother carers, to a trusted friend or to supportive members of your family. Don’t bottle yourfeelings up.

� Call the Dementia Helpline at anytime to speak, in confidence,about how you are feeling (0808808 3000)

� Speak to staff at your localAlzheimer Scotland service

� Try to persuade friends to dropin for a chat or to phone youregularly

On the day of the move

The move may be difficult for bothyou and the person you care for.The person is likely to feel upset atbeing left and you may find thisexperience very harrowing. Manycarers feel that they have lost theirrole in the person’s life, as thoughthey have been deprived of caring.You may feel that the person’smove leaves a huge gap in your own life.

“I was too wrapped up in concern andplanning for her to be OK to thinkabout how it would be for me. I hadno idea what it was going to do to me– it was awful to be reduced fromdaughter and primary carer to visitor.It took a few months to come to termswith it”Daughter

Get someone to go with you if youcan, to support you and for you tospend time with when you leave.

Comments from carersabout how they wereaffected

"Sending back his driving licence,throwing out his library card – it’s as ifhe’s died but he hasn’t"

"I didn’t think I would grieve – I thoughtI’d lost him years ago – but now I’mgrieving for this other person"

"Depends on what kind of relationshipyou had with the person before – if onlyI’d …."

"Emotions change from day to day orhour to hour."

"I feel deep sorrow for the person andwhat they’ve lost."

"Now my husband is in care, everyoneasks how he is not how I am."

"You need to forgive yourself"

Carers find different ways of coping.Some find carers’ support groupsparticularly helpful since it is possible tospeak to members about things youmight not want to discuss with yourchildren or other members of the family;however, where the group includes somecarers who are still looking after theirrelatives at home, it can make you feelinadequate – why couldn’t I cope if theycan?

Does it get any easier to cope? Forsome, not others.

Looking on the bright sideYou may find that there are positiveaspects to your changed circumstances.Your life will no longer be centred roundthe practical tasks or caring ororganising help. You may feel lessstress. You may feel that you now havethe freedom to do things for yourself, orto go out when you want to. You mayget more sleep. The lessening of yourresponsibilities may come as a reliefespecially if you or the person you carefor is ill, even with a minor illness. Youmay also find that your time with yourrelative can be more relaxed andenjoyable if you no longer have to deal

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with many of the practical caring tasksnow carried out by the care home staff.

Establishing a relationshipwith care home staffQuite often, carers are asked to stayaway for the first week or so to allowthe person to settle. This is generallynot held to be good practice – it isimportant for the carer to maintaincontact, the carer knows the personbest. It’s a traumatic enough timewithout feeling excluded. If the homesuggests staying away, discuss it withthem and go with what feels right.Alternatively, you could stay away butphone in regularly to check.

Some carers find that being asked tostay away for a few days sends amessage that they are no longerexpected to play a significant role intheir relative’s life.

"We’ll take over now – you have a rest"

This may be well-meaning, but canestablish a role for the relative which ishard to adjust at a later date.

Often staff-relative relationships areestablished very early on. The initialwelcome when the person withdementia moves in can make all thedifference for future relationships.Being met at the door, shown to theperson’s room, introduced to staff andother residents, and being given a cupof tea can all be important in reassuringyou that you have made the rightchoice.

You may feel all sorts of conflictingemotions, alternating between feelingreassurance that your relative willreceive appropriate care and despairthat you are no longer able to providethat care. The focus on your relativemay leave your feelings ratherneglected.

“They were lovely and that made me feelbetter. Because it is an emotionalexperience. I’ve been responsible for him forthe last six years and to suddenly let go andhand him over to somebody else. I shedquite a few tears over it.”Daughter

Other relatives may find that theirfeelings are not acknowledged.

“I think there’s a lot that someone couldhave said.‘How are you feeling about this?’‘How is it affecting you?’‘Are you comingto terms with it?’”Son

An alien environment?The difficulties experienced by relativesin making decisions about placing theperson in a care home do notnecessarily end when you find asuitable home. A care home isgenerally an unfamiliar environment forboth the person with dementia and thecarer - the people and the surroundingsare strange and no-one is quite surewhere they fit in or what the rules are.

It is important to try and make the newsetting as familiar as possible to thenew resident and relatives, at the sametime establishing new relationships withstaff and helping staff become familiarwith the needs of the person and thefamily. Taking familiar pieces offurniture for the person’s room, puttingup familiar pictures, ornaments or othermemorabilia and favourite music can allhelp make the new home lessunsettling. Ensuring the family aregiven time to help settle the person isalso important.

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Section ThreeThe Impact of the Move on the Person with Dementia

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The person with dementia may have hadlittle input into the decision to place himor her in a care home and theexperience of being moved from familiarsurroundings and familiar faces can beextremely unsettling. This can result inchallenging behaviour or a deteriorationin the person’s condition but steps canbe taken which may help the personadjust and settle more quickly.

Even if the person cannot expressfeelings and wishes verbally, he or shemay still be upset at leaving home. Tryto understand and accept those feelings.Try reassuring the person that you willbe visiting regularly, taking him or heron outings, and so on.

Talk to staff at the home – they mayhave ideas on how to help you and theperson adjust to the change. Theperson may be very low in spirits for thefirst few weeks but some people settlein very quickly. Be prepared, though,for the person to feel very unsettled.Often someone with dementia asks togo home. Sometimes, the person willsay this to relatives and care home staffalike, sometimes he/she may only saythis to the family either because he orshe doesn’t want to confide in strangersor because it seems impolite. You maywant to discuss with other familymembers and staff how you will respondif the person asks to go home – it canhelp if you are all consistent and helpyou feel more prepared for what onecarer described as ‘an emotional bodyblow’.

Ask staff how your relative seems whenyou are not there; it may be that he orshe remembers what has changed morewhen familiar people visit and is settlingin quite well the rest of the time.

On being admitted to the care home,the person with dementia mayexperience a range of difficulties,including disorientation, deteriorationand frustration.

DisorientationLeaving a familiar environment whereyou feel safe and comfortable to moveto a place where all the faces, smells,sounds and colours are unfamiliar can

be really frightening and confusing.

“We took some things in to try to make herfeel more secure in the first few days. Forexample, her unwashed pillow slip andnightie, for a familiar smell, and her oldsofa because she was used to it and sat thereall the time. Smell is especially important tomy mother because she’s blind.”Daughter

DeteriorationDeterioration of the person’s conditionmay or may not have prompted theadmission to long-stay care; however, itis not unusual for a person’s condition toget worse on admission to a care home.The unfamiliarity of the surroundingscan mean, for example, that the personcan no longer find his or her way to thetoilet, which can cause him or her tobecome incontinent. The person willalso not be receiving the one-to-onecare that he or she received at home.

FrustrationThe person may have great difficulty ingetting unfamiliar care home staff tounderstand his or her wants and needs,which can lead to anger or aggression.The person may also be used to havingmore freedom of movement than thehome may be used to providing.

The person is undergoing huge changesin his/her life and there are bound to bechanges in behaviour and evendeterioration in the condition. Often,homes will suggest that a carer staysaway for a few days to allow the personto settle in. This is no longer seen asgood practice and carers should decidewhat is in the best interests of theperson with dementia and themselves.

On the day of the move, try to makesure that when you leave, the person isoccupied with something positive, suchas a meal and thus distracted from thefact that you are leaving.

We took Mum’s favourite music with usand made sure it was on when she arrived.

Section FourDon’t Leave it Until the Funeral

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How many of us have attended a funeralservice and discovered all sorts ofinteresting things we never knew aboutthe person whose life we arecelebrating? This section stresses theimportance of letting care home staffknow about the person they are caringfor, what has made the person; holdingon to the person’s identity. As theperson’s memory and ability tocommunicate verbally get worse, familyand friends may be the only ones whocan keep alive the knowledge of theperson – their likes and dislikes, theirmemories, their history.

In the past, there was a strong traditionin professional health and social careservices to "take over" the completecare of the person going into long-staycare in hospitals and care homes, withfamily members being viewed as nolonger directly concerned with the careof the person. More recently, there hasbeen a move away from this‘paternalistic’ approach but this sort ofcultural change takes time to develop.Professionals may still be inclined totake over, even in a very well-meaningway, and relatives and friends expect tolet them, even if they are reluctant todo so. Relatives may think "They knowbest" and care home staff mayencourage that view, however subtly.

“Don’t worry, we’ll look after him now”

On the one hand, this may soundreassuring; on the other hand it may begiving relatives the message that theirservices are no longer required. Morewill be said about how such messagescan be misunderstood in Section 8 onCommunication.

Person-centred careWith the gradual shift away from thepaternalistic approach has come theconcept of person-centred care. Person-centred care stresses the importance ofletting people know about the person;what has made the person; holding onto identity/ sense of self.

In particular, it is:1. Care that is centred on :� the whole person not the diseased

brain;

� remaining abilities, emotions andcognitive abilities –not the losses;

� the person within the context offamily, marriage, culture, ethnicity,and gender.

2. Care that is centred within a wide society and its values.

How can you as a carercontribute to person-centred care?Let people know about the person youhave cared for; what has made andcontinues to make the person; how tohold on to the person’s identity. Don’tleave it until the funeral to tell peopleabout the person’s life, achievements,interests, fears and passions. By givingthe home as much information aspossible, you will help staff understandthe person and provide the best qualityof care and understanding as possible.

The Care Commission, the organisationin Scotland which registers care homesand oversees standards of care, sets outrequirements for the sorts of informationthat homes should collect about aresident; however, you cannot providetoo much detail about the person.

Some of his or her likes and dislikesmay seem insignificant but knowingabout them could make all thedifference to a staff member trying tounderstand why a resident is reacting ina particular way. This sort ofinformation, together with details of theperson’s life history and significantrelationships, personality, attitudes andvalues, personal preferences androutines can all be gathered together toform a personal profile which is uniqueto that person.

Putting together the profile– handy hints

� What was the normal pattern of theperson’s day before entering thehome or further back in their youngerdays?

� If you send in photographs, write onthe back who they are and what istheir connection with the person withdementia

� Remember to record informationabout children and pets

� A loose-leaf binder helps you to addnew sections easily

� Consider working with other familymembers and friends on drawing upthe profile – they may be able tocontribute additional information fromtheir own relationship with theperson.

Drawing up a life historyMethods for doing this varies. Somehomes might involve the person’s keyworker in working with the resident andhis or her family and friends to puttogether an actual life story book. (seeSection 7 for more on life story books).In others, the details about the person’slife and history are recorded simply aspart of the process of "care planning".

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Section FivePractical Ways to Stay Involved

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Preparing for the period after the personhas settled in is just as important aspreparing for the move. It can be anemotional time with mixed feelings suchas relief, guilt and grief at theseparation. Your daily activities suddenly change.

Many people believe that full timeresidential care will remove them fromthe caring role. The fact is you are stillcaring. You don’t stop caring justbecause you no longer do the physicaltasks of caring. Allowing others to takeresponsibility for the practical caringtasks does not lessen your role as acarer. You are the ‘expert’ when it comesto caring for your relative.

Your role now is to work with care homestaff to inform, advise, recommend,make decisions and encourage the bestpossible quality of care for your relative.You can also continue to contribute tothe physical care of your relative if youwant and to the extent that you want.

The care home should involve you incaring for your relative by:

� asking you for information about yourrelative’s family background, pastemployment, activities and hobbies,likes and dislikes, language, religion,culture, etc.

� encouraging you to make yourrelative’s room as home-like aspossible

� working with you to develop a careplan for your relative which sets outhis or her care needs, goals,strategies and actions to ensurethose needs are being met

� reviewing the care plan with youregularly

� informing and consulting you aboutmanagement of your relative’scondition

� consulting you about issues such asthe time your relative likes to get upand go to bed, bathing times, whatthey wear, what they eat, when theyhave their meals, and so on. Thesepreferences should be accommodatedas much as possible within thehome’s routines

� encouraging you to read yourrelative’s day to day notes or

communication book� greeting you on arrival and saying

goodbye� inviting you to attend relatives’

meetings where the day to dayrunning of the home is discussed,although not all homes have suchmeetings

� informing you about the person, notjust when they are ill but about goodthings such as achievements, outingsthey have been on, how they relateto other residents and staff, and so on.

If the home does not actively promoteinvolvement from relatives you shouldspeak to the manager or person incharge about how you wish to beinvolved and ways they can help you todo this.

Relatives should be seenas an assetSome relatives report that they feelresented when they try to continueaspects of day to day caring such ashelping with meals, taking the person tothe toilet or taking the person outsidefor a walk in the garden. Staff may feelthat it is an implied criticism of themwhile the relative may see it as simplycarrying on doing something they havealways done.

One argument against relatives gettinginvolved with personal care is that theymay not be covered by insurance if anyaccident took place. It might bepossible for homes to offer appropriatetraining or the home could ask therelative to sign a disclaimer againstthem sustaining an injury.

Pressure on staff may mean that sometasks like cutting finger nails, applyingmake up or sewing on buttons are hardto fit in to the daily schedule. These aretasks that relatives may be delighted tohelp with, to the benefit of allconcerned.

In other cases, staff may havedifficulties persuading the person tomaintain adequate levels of hygiene. A relative might be able to persuade theperson by helping with bathing.

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Care planningThe care plan should be a detaileddocument setting out an individual’scare needs, considering the person asa whole rather than a set of symptomsor problems. The plan should beupdated and reviewed regularly, toreflect the person’s current situation.Relatives have a significant role to playin giving information about theperson’s social, emotional, spiritual andcultural needs as well as their likes anddislikes and preferences. If you havebeen caring at home for some time,you can also contribute valuableinformation about the person’s medicaland nursing needs, although thiscontribution may lessen as time goesby and the person’s condition changes.

Monitoring PersonalExpenditureIn calculating the amount to becontributed by an individual towardstheir care home fees, the localauthority has to allow the resident toretain a Personal Expenses Allowance(PEA) of (currently) £18.80 per week.Residents should not be asked to puttheir PEA towards meeting the basiccost of their care but carers should

check with the home what services areincluded in the fee charged – will theresident be expected to pay for itemssuch as hairdressing or outings, forexample? The PEA is intended to buyitems such as personal toiletries, smallgifts and clothes but carers may wishto add to this sum to enable residents(or care home staff on their behalf) tobuy extras such as food treats.

A carer may already have beeninvolved in recording the person’spreferences for things like toiletries andfood in the personal profile which willhelp care staff to know what itemsshould be purchased on a regularbasis. But carers may want to beconsulted about larger items ofexpenditure on, for example, clothingand may want to keep track of anyaccounts set up for the resident’spersonal expenses.

One carer was very upset to learn thata sum of money had been taken fromher husband’s account to buy him anew shirt since it was in a colour thatshe would never have chosen for herhusband and which he would not havewanted to wear.

Section SixUnderstanding Behaviour

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Relatives may make the difficult decisionto place the person with dementia in acare home because their behaviour hasbecome too hard for the carer to copewith. But even where behaviour has notbeen a particular problem in the past,the move to a care home is highly likelyto cause changes in the behaviour of theperson and even deterioration. Thissection looks at some of the changesthat may occur, the importance ofunderstanding behaviours, andstrategies for coping with difficult orchallenging behaviour.

Regardless of a diagnosis of dementia,behaviour is an essential part of being ahuman being. You may have foundwhen you were caring for your relativeat home that he/she had certainbehaviours that you found difficult tounderstand or cope with; for example‘wandering’ (now more accuratelydescribed as ‘walking’), or perhapshe/she became very withdrawn anddifficult to communicate with or did notwant to get washed or dressed.

When someone moves to a care home,these behaviours will continue and,because of the unfamiliar faces andsurroundings, may be more difficult forcare home staff to deal with.Alternatively, after admission yourrelative may start to show types ofbehaviour that are a challenge either tostaff or to other residents.

It is important that you do not feelresponsible or guilty if there areproblems with your relative’s behaviour.You can, however, make an importantcontribution to helping the care homestaff to manage any challengingbehaviours by:

� understanding that behaviours forsomeone with dementia are a way ofcommunicating, when speech isdifficult and the dementia is cloudinghow the person thinks – exhibiting abehaviour is a way of being heard

� providing the home with as muchbackground information as possible –it may give the key to the behaviour

� encouraging the staff to look at thebehaviour and make an informeddecision as to whether they need to

try to change or control thebehaviour – it may not be necessary

� remembering that some behaviourscaused by the disease process maynever be understood or modified buthow the illness affects the person willeventually change and, with it, theperson’s behaviour.

Remember that care home staff gohome at the end of the day and there isa team of people involved which makesit easier for them to keep on caring,even when they are faced withchallenging behaviour.

"There’s a whole team here – you had todo it on your own."

UnderstandingUnderstanding the person with dementiaand adapting the environment or carepractice is needed to better meet theindividual’s needs rather than usingrestraint or medication to control thebehaviour.

A good balance needs to be struckbetween protecting residents and thegains in quality of life that can beachieved by taking some risks forexample in relation to walking

Factors to consider:

� environment - is it too noisy, too hot,too cold?

� physical - can he/she see and hearOK? Does he/she need to go to thetoilet?

� physical illness - is the person in painbut unable to tell you? Does he/shehave an infection?

� depression will affect behaviour,particularly if the person is grievingat the loss of his or her former homeand way of life

� medication – this usually takes theform of some kind of sedative butshould only be considered as a lastresort.

Relatives can be a valuable resource inunderstanding the behaviour of the

person with dementia. Your experienceand knowledge of the person may helpexplain why the person seems anxiousor has reacted badly to a particularsituation. People who constantly try toleave the home or get agitated atparticular times of the day may berecalling something from their earlier lifewhen they went to work at a particulartime or left home to collect the childrenfrom school.

People whose first language was notEnglish may revert to their firstlanguage as their dementia develops.Where staff are unable to communicate,relatives may be able to talk to theperson on the phone to determine whatis causing a problem. People who areresistant to eating may be persuaded toeat when helped by a relative they knowand trust.

Care home staff should consider usingthe equivalent of a "pain ladder" indetermining what steps should be takenin managing challenging behaviour andinvestigate what is the appropriateresponse and tactics to use beforetrying medication?

ANTI-PSYCHOTICSANTI-DEPRESSANTS

COMFORTENVIRONMENTAL

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Section SevenVisiting

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Visiting is the main way in which youcan maintain close contact with yourrelative, yet visiting can cause all sortsof difficulties which need to be treatedwith sensitivity. You have been livingwith or caring for the person for manyyears, in some cases for a lifetime, sothe concept of visiting is unfamiliar. Youhave to rely more on talking to theperson, whereas before you would havedone things together. You are uncertainabout what to expect in the newsurroundings of the care home. Youwant to do the right thing and not causeany upset to the staff, while at the sametime making sure that your relativereceives the standard of care he or sheneeds. This section considers how oftenyou should visit, offers suggestions foractivities during visits, including duringthe later stages of the illness, and howto manage leaving.

Making the decision to find residentialcare for the person with dementia maybe one of the most difficult decisionsyou have to make. You may feel guiltyabout not having been able to care forthem right to the end at home and feelthat you are abandoning them. However,it is important to bear in mind that whatyou are doing is in the best interests ofeveryone concerned. Although, it maybe difficult to handle at first, the personwill benefit from full time professionalcare.

You can still visit regularly and mayeven find that as time goes on, yourrelationship improves, as you are nolonger under such strain. You might findit difficult to see the person withdementia being cared for by otherpeople and feel somewhat excluded.This is why it is important to visitregularly and if possible to remainactively involved in the person’s care.You could, for example, assist at mealtimes, comb the person’s hair, give themsomething to drink and help to makethem comfortable. In this way you willbe helping the staff as well as carryingon caring for the person with dementia.

At first, you might find visiting difficultbut it generally becomes easier after awhile so try to persist. Many people findthat their relationship with the person

they have cared for improves after he orshe enters a home. With the pressureoff, you may be able to bring back theoutward signs of loving and affectionwhich may have been suppressed by thestress of day-to-day caring.

“I visited any time. I could go in andgive him his lunch and tea”Wife

Life Story Books

A life story book can combine photoswith notes about the person’s parents,brothers and sisters, children, work,places he or she has visited or lived in,favourite holidays, friends, hobbies,favourite foods, least favourite foods,colours, favourite films, music, likes anddislikes. Photos, post cards, scraps ofmaterial from old clothes or bedcoversand other memorabilia can be added tothe story book.

Handy hint

It helps to use poly pockets or plasticcovering for life story book pages – theywill get handled a lot.

Don’t feel you must do anything beyondwhat you would like to do, but if youfeel you want to, some possibilities are:� visiting the person – but don’t feel

you must visit every day or evenevery few days, if that isn’t right foryou

� keeping the person involved aboutfamily news

� helping the person reminisce,perhaps with photographs or a lifestory book of reminders of significantevents and people in his or her life

� going on outings – to shops, to teaor to visit old friends, or a run in thecar

� choosing new clothes and personalitems

� helping in the home with some of theperson’s day-to-day care or atmealtimes

� bring newspapers and magazines tolook at together

� play games that the person hasenjoyed in the past

� help decorate and tidy the person’sroom

� bring others to visit� bring pets, if allowed by the care

home� take in things that the person likes

such as chocolate, crisps, or even alittle alcohol if that does not conflictwith any medication the person isreceiving.

Handy hint

If the person likes to listen to music, tryto find a waterproof personal stereo/CDplayer in case of spillages

Think about what you would like to doand what you would rather not do anddon’t worry if your feelings about thischange over time – this is normal. Youcan become more or less involved asyou wish, secure in the knowledge thatyour relative is safe and cared for.

Difficult visitsSometimes visits can be hard to copewith emotionally if the person is, forexample, weepy or angry. If thishappens:� talk to the staff and find out how the

person is at other times� try varying the times you visit – the

person may feel better in themornings when he or she is less tired

� visit just before a meal so the personhas something to do after you leave.

Visiting in the later stagesMany people find visits difficult when theabilities of the person with dementiadecline and he or she is no longer ableto join in conversation. Where this is thecase, some ideas for making visitsenjoyable for both of you include:� looking at old photographs or

mementos together to remind theperson of his or her life

� massaging hands and perhaps feetwith scented creams or oils can berelaxing and comforting. The scent ofperfumes and flowers can also beenjoyed

� listening to some familiar musictogether

� having a cuddle or simply holdinghands; a smile, a comforting gaze ora look of affection can often providereassurance to the person withdementia

� visits from friends and relatives, eventhough they may not be recognisedor remembered, can providestimulation and comfort

� a stroll around the grounds, even ifin a wheelchair, can be enjoyable forboth of you

� keeping your visits short – 10minutes may be enough for both ofyou

� taking things to hold and touch.

Don’t get despondent when visiting -take pleasure in the small things - a smile, a laugh, a joke, a cuddle, aglimpse of recognition.

Don’t stop visiting because you thinkthere is no point because your relativedoesn’t appear to recognise you. Eachday is different and it is difficult to tellwhat the person is feeling but care staffsay people always appreciate seeingvisitors. Live for the moment - it doesnot matter that the person won’tremember your visit - you will havehopefully brought pleasure andhappiness whilst you were there.

Activities

Consider things like massage, life storybooks, photos, objects, sensory material– fabrics, smells, textures, music, goingoutside to the garden.

Personal grooming – styling hair, givinga manicure, putting on nail polish

Resource boxes: as well as individual’slife story books, some care homes mayconsider making use of resource boxeswhich can be filled with items that canbe used during visits to trigger offconversations or ease communicationbetween residents and visitors. Thiscould include books with photographs,postcards of tourist attractions, musictapes or CDs, videos of particularevents, and even things like handcreamsor other sensory material like fabrics.These can be inexpensive to puttogether and could encourage visitors toget involved.

Don’t feel you can’t try somethingdifferent or introduce your own activitiesjust because "the staff might not like it".

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Frequency of visitsThere is no correct number of times thatthe carer should visit, or amount of timethey should stay. The important thing isto make each visit as rewarding aspossible and to do whatever you canmanage and what feels right. Somepeople visit every day, particularlyhusbands and wives. But you should dowhat feels right for you – if visitingevery day is stressful for you and upsetsthe person, then don’t do it.

You might consider sharing the visitswith other relatives and friends. Don’tfeel you can’t take a holiday eitherbecause you would miss some visits orbecause you feel guilty when the personcannot do the same.

LeavingLeaving after a visit can be a difficulttime particularly if the person becomesdistressed.

You might want to try:� telling staff when you plan to leave

so they can be there to help� making your departure coincide with

an activity or a meal� keeping your goodbyes short and

leaving straight away.

If the person wants to leave with you orgets upset when you leave try differenttactics – vary the time of day you visit;vary the length of visit; maybe coincideyour visit with just before a meal orwhen the person has something else tofocus on.

Wanting to go homeA common phrase heard from peoplewith dementia in care homes is "I wantto go home" or "I don’t like it here".This can be especially hard for carerswho already feel guilty or upset aboutplacing the person in a care home.Wanting to go home may be caused byfeelings of insecurity, depression or fear.It may be that the "home" the person istalking about no longer exists. Instead,it may describe memories of a time orplace that was comfortable and securesuch as the person’s childhood.

You might want to try:

� understanding and acknowledging thefeelings behind the wish to go home

� reassuring with touching and holdingand telling the person that they willbe safe

� looking at photographs or talkingabout childhood and family

� distracting the person with food orother activities such as a walk

� not disagreeing with the person ortrying to reason with them aboutwanting to go home.

“The most awful part of the whole thing wasdealing with John saying I’m coming homeor leaving here next week”

Where to conduct the visitYou may feel more comfortable visitingthe person in his/her own room ratherthan a communal lounge. Visiting in apublic place can cause a strain,particularly where the person may behard of hearing or where other residentsare receiving visitors. You may feel veryinhibited about engaging in conversationin a residents’ lounge. On the otherhand, you might prefer to have thedistraction of other people if yourrelative does not communicate.

You may feel reluctant to suggest thatyou move your relative to a moreprivate area for your visit especially ifyou need assistance from staff to movethe person. It helps if there are seatingarrangements in the home to suitvarying needs of residents and visitors.Some visitors might want to share ameal or a snack with the person whichmay require a small table to be setaside. Visitors may wish to come alongat mealtimes – if arranged in advanceand paid for if required, this mayencourage the resident to eat more.

Home visitsShould you take the person home for avisit? There are problems with caring forthe person although organisations likeCrossroads may be able to providesupport for a short visit. However, youdo not want the person upset ordisorientated by moving them aroundtoo much.

The person may get a feeling of comfortand pleasure from experiencing home,

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the garden, and familiar smells. Even ifhe or she doesn’t remember the event,the good feeling may stay with him orher or they will at least enjoy it at thetime.

“I don’t think I could cope with my husbandcoming home – it would be cruel for both ofus, but it depends on those involved.”

Visiting policiesIf there are rules about visiting,relatives and friends need to know whatthey are. Are there certain times of daywhich must be avoided? Can you bringalong a pet or small children? It couldbe frightening for children but manyolder people get great pleasure fromseeing young children. You would haveto gauge this for yourself – if the persongets pleasure from seeing the children,and the children are happy, then thereshould be no reason why they should

not be involved.Is there somewhere where visitors canmake a cup of tea? If you have beentold to treat the home just as you wouldif it was your mother’s own home, thenget ticked off for going to the kitchen tomake a hot drink, how would you feel?

How you are received when you visit canmake a big difference. If you ring thedoorbell and it takes ages for someoneto answer, then the person answeringcan’t even exchange a few words withyou, it can make you feel like you areintruding and less inclined to visit asregularly or for as long. Being greetedby a familiar, friendly face can make allthe difference.

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Section EightCommunication

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In this section we considercommunicating with your relative andcommunication between care home staffand relatives and friends.

Communicating with theperson with dementiaOnly 7% of communication is via thespoken word. The remaining 93% isnon-verbal, so even if the person can nolonger speak, this still leaves quite a lotto work with. As the dementia worsens,the person will have increasing difficultyin understanding what is said or what isgoing on around them. They maygradually lose their speech, or repeat afew words or cry out from time to time.

Ten things to do toimprove communication

� Believe that communication with theperson is possible

� Try to focus on the nonverbal signsas well as what is said

� Avoid making assumptions: checkthings out with the person

� Make your communication a two wayprocess that engages the person withdementia

� Avoid the use of jargon orcomplicated explanation. Keep yourconversation as simple as possiblewithout being patronising or soundingchildish

� Do not ask questions which have‘why’ in them. The person withdementia may find the reasoninginvolved in giving an answer difficultand become annoyed withthemselves

� Be a good listener. Give the personyour full attention and resist thetemptation to finish their sentencesand talk at the person

� Talk at a slower pace so that theperson has an opportunity to graspwhat is being said

� Maintain a calm and unhurriedapproach

� Discover the best time of day tospend time talking with the person

Having focused on how we can improveour communication, there is also a needto acknowledge that the livingenvironment can play a part in helping

communication. A quiet area wherecarers and residents can sit togetheraway from the distraction of otherpeople and the television can be moreconducive to good communication.Visitors may prefer to go to the person’sroom rather than sit in communal areas.

Where the person can no longercommunicate verbally, consider usingother methods. One way to let theperson with dementia know that youcare and that they are not alone isthrough touch. You could simply takehold of their hand gently without sayinganything or gently put your arm aroundtheir shoulders. The physical contactmight provide reassurance. Listening tomusic together or using items inresource boxes involving scent ortexture can all give a sense oftogetherness even if no words areexchanged.

Some relatives get upset when they seethe person showing affection towardscare staff but it should be seen as theperson communicating in the best waythey can. If the person is happy with thecare staff that is a good reflection on thecare being given and the family shouldbe comforted by that thought.

Communication with staffSometimes the most innocent remarkcan be misinterpreted and causeconsiderable upset. Sometimes staffcan answer a relative’s question in away that they think will be the leastupsetting – with the opposite effect.

For example, if one of the reasons youdecided to place your family member ina care home was that you could nolonger cope with his or her challengingbehaviour, it will not necessarily helpyou to hear that he or she is "no bother"or "no trouble at all". A statement likethat is likely to make you feel guilty orthat you have somehow let the persondown. The staff may have been facingthe same problems but just do not wantto worry you.

Relatives and staff need to know whattheir respective roles are in the care ofthe person with dementia. It is not acriticism of staff that you want to carry

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on doing things for your family member– it is a way of you feeling involved andof maintaining your connection with theperson.

Sometimes relatives ask the person incharge of the home if it is all right forthem to get involved in a particular way.This agreement needs to be passed onto all the staff involved.

Some carers may live too far away tovisit regularly but can still be keptinformed by telephone or in writingabout how their relative is getting on.As well as regular news, there may bespecial situations which relatives need tobe told about such as changes in theperson’s health or changes to theirmedication. Some homes make a pointof telling relatives about medicalappointments to give them a chance toattend with the person.

Keeping relatives informed can behaphazard if there are not propermechanisms in place to do so. A keyworker or named nurse can be the mainpoint of contact for relatives but thereneeds to be a back-up mechanism foroccasions when that worker is not onshift.

Make sure you know andare told about:

� who the key worker is for the person� what the doctor said if called� any reviews of how the person is

doing� how you should approach care staff if

your relative is dissatisfied but afraidto complain.

Some care homes keep acommunication book in a resident’sroom where relatives and other visitorscan pass on information and raisequeries. Some carers may want to havea visitors book so they can see who hasbeen to visit their relative, who mightotherwise forget or be unable to explainwho has visited. Staff can also getinvolved in filling in pieces of news andinformation about what the resident hasbeen doing since the previous visit.

Some home managers say their door isalways open to relatives and othervisitors. Even if this is the case,relatives may prefer to make a setappointment to ensure that sufficienttime is set aside for the meeting.

Other sources ofinformation and supportSome homes set up meetings forrelatives where pieces of news about thehome can be passed on and to allowquestions to be asked; meetings canalso include talks from invited speakersas well as a chance for relatives to gettogether to discuss issues collectively.

Newsletters and notice boards are othercommunication methods which could beused.

“The staff at the home were always very pro-active in telling me about any problemsMum had and what they had done aboutthem. I think it’s important to shareinformation. I also tried to make sure that Itold the staff about any changes I noticed inMum or any concerns I had as soon aspossible.”Daughter

ComplaintsEach care home will have a complaintspolicy and procedure which should beexplained to relatives and residents butoften a problem can be dealt withinformally before it reaches the stage ofa formal complaint.

Frequently, the problem lies with thefirst person that the complaint goes to –the simplest thing can get blown out ofall proportion just because it washandled badly in the first instance by amember of staff reacting defensively. Asituation can be defused and therelative’s anger deflected by thewillingness of the staff member to listenand investigate.

“I wasn’t here when that happened but let’slook at what’s recorded.”

Section NineEnd Stage Dementia

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There are around 63,000 people withdementia in Scotland, of whom 28% arethought to be in the end stage of theillness.

What do we mean by endstage dementia? The length of time the person mayexperience in the end stage of theillness can still be many years; it isimpossible to determine how long.

End stage dementia is the last part ofthe long journey that somebody withdementia has to make. While eachperson’s experience is different, by thisstage of the illness the person is likelyto exhibit severe memory disturbancesand the physical side of the diseasebecomes more obvious. Particularsymptoms include:

� severe fragmented memory� limited verbal skills� orientation only to self� inability to make judgements� inability to problem solve� no independent function� a need for help with personal care

and continence management.

Later still, the person may enter a stageof total dependence and inactivity wherehe/she may have difficulty eating andwalking, may fail to recognise relatives,friends and familiar objects, havedifficulty understanding and interpretingevents, may suffer bladder and bowelincontinence, and be confined to awheelchair or bed. The latter can makethe person especially vulnerable toinfections such as pneumonia, which canbe fatal.

People with dementia differ in the speedwith which their abilities deteriorate butdeteriorate they will. While dementia isa terminal illness, death often occurs asa result of complications arising fromthe effects of the disease rather thanthe disease itself. So, an inability toswallow can increase the risk of foodand drink entering the lungs rather thanthe stomach which in turn can lead topneumonia. In addition, many olderpeople with dementia have otherconditions that tend to increase inincidence with age, such as heart

disease, diabetes and cancer. Theseconditions can also contribute to theperson’s decline and eventual death.

Towards the end of the disease,treatment focuses on relievingsymptoms rather than curing theproblem but this can be challenging forthose caring for someone who isincreasingly unable to report or describetheir pain or discomfort.

As a long-term carer, you are likely tohave spent years developing vitalknowledge and caring strategies to helpyou meet the unique needs of theperson you care for. Your awarenessand sensitivity to the, often, subtlechanges in your relative’s behaviour,facial expression and body language thatcan indicate pain or distress make youideally placed to help care home staffprovide appropriate care.

Carers also carry knowledge about theperson with dementia’s past beliefs,wishes and preferences about specifictypes of medical treatments orinterventions. More will be said on thisissue in Section 10.

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Section TenPreparing for the End of Life

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Towards the later stages of the journeythrough dementia, carers and relativesmay be faced with a number of difficultand emotionally-charged decisions. Forexample, in a medical crisis, questionsabout the use of resuscitation or varioustreatment options like artificial feedingor antibiotics can be very challenging forrelatives and medical staff to resolve.This section looks at how you can planahead for some of these difficultdecisions.

Dementia is an unpredictable illness –we can’t talk about specific timescalesbut it will shorten life.

What do you want for theperson? And what wouldthey want for themselves?Many people have very strong views andpreferences about the ways in whichthey would want to be treated in theevent of them suffering from a life-threatening illness. Your relative may inthe past have expressed wishes andpreferences about his or her future careand medical treatment which, becauseof the progression of the illness, he orshe may be unable to communicate lateron. A growing number of people aresetting down these preferences in theform of advance statements (oftencalled living wills) which state whattypes of treatment they would or wouldnot want to receive if they were unableto give or refuse consent.

As long as your relative is capable ofunderstanding what proposed medicaltreatment involves, his or her consent isnecessary. It is important to rememberthat capacity to give informed consentmust be assumed, unless there isevidence to suggest otherwise.

If a doctor believes that a treatment willbenefit a patient with dementia who isincapable of consenting, the doctorshould sign a certificate of incapacitywhich gives him or her authority to treatthe person. Before doing so, the doctorshould consult with the carer andanyone else closely involved with theperson, to get their views on theperson’s ability to give consent. Wherethere is a legally appointed proxy orsubstitute decision maker, such as a

welfare attorney or a welfare guardianwith medical decision making powers,the doctor must seek a decision fromthat person, where it is reasonable andpracticable to do so.

The doctor’s authority to treat can coverany procedure or treatment designed tosafeguard or promote the person’sphysical or mental health. Treatmentwithout consent can still be given in anemergency without the need for acertificate of incapacity, in order topreserve life or prevent seriousdeterioration.

The Adults with Incapacity (Scotland)Act 2000, however, says nothing aboutthe withdrawal and withholding oftreatment, although it would beconsidered good practice for the doctorto consult.

The Care Commission stipulates that, onadmission to a care home, the familyare asked what they want to do aboutfuneral arrangements, resuscitation, etc.This can be distressing at a time whenpeople are already feeling upset but ithelps to be forewarned.

Information about the person’s past andpresent wishes and views should berecorded in the personal profile wherepossible. Recording information aboutviews and preferences aboutresuscitation and funeral arrangementsmay seem premature but it can savedistress at a later date.

When your relative has diedAfter the person’s death, you are likelyto pass through various stages.Although death has to be expected, andyou have already experienced a lot ofgrieving and loss throughout the courseof your relative’s illness, you may wellfeel shock when the time comes andmay feel numb. Later, you may becomepreoccupied with thoughts of yourrelative and feel unable to accept whathas happened to him/her. Many peoplesay that they still expect the person toreappear.

At first you may feel relieved that theperson is dead. You may then feelashamed that you have felt this but

relief is a normal reaction. You may alsofeel angry or guilty or depressed, aloneand exhausted. These are normalfeelings under the circumstances andyou need to give yourself time to getback on your feet.

Following your initial reaction andresponse to the death of your relative,your emotions may change. You maystart to experience feelings of guilt,anger, isolation and depression and mayfeel unable to accept and come to termswith the person’s death, even if at thebeginning you seemed to be coping wellon the surface. The intensity of theseemotions can leave you emotionallydrained. It is therefore important not toignore them, but rather to acknowledgethem and let them pass. In this way,you will be able to grieve their loss andcarry on with your life, knowing that youdid your best.

Looking after yourselfTo survive the grieving process you needto look after yourself. Even when youare coping well, there may still be timeswhen you feel upset and depressed,even for months or years afterwards.Talk about your feelings to anunderstanding professional, to othercarers, to a trusted friend or tomembers of your family. Don’t bottleyour feelings up.

Try to persuade friends to drop in for achat or to phone you regularly. Youshould avoid making any importantdecisions at this time when you arelikely to be feeling shocked andvulnerable.

Accept that you will have good days andbad days, and the bad days may welloutnumber the good days. Specialdates such as anniversaries andbirthdays can be particularly hard tocope with – try to arrange somethingpositive to do on those dates.

Pay attention to your physical andmental condition. During the grievingprocess, people have a higher risk ofbecoming ill or depressed. It is thereforeimportant that you look after yourhealth and that you contact a doctorshould you feel ill or depressed.

Keep in contact with family, friends andother carers. Speaking to people whoknow and understand you will helpprevent you from churning overdepressive thoughts and doubts. Forexample, you may start to ask yourselfif you could have done more for theperson and think about times when youmight have shouted or got angry withthe person. By talking with others whounderstand, you may be able to releasesome of the tension you are feelingwhich may have built up over the yearsand start to see things more inperspective, remembering the goodtimes rather than blaming yourself.

Once some time has passed thememories of the impact of the diseasewill become less vivid and you may findthat you are able to remember the personas he or she once was before the illnessset in — even if this seems unlikelyimmediately following his or her death.

“When my mother died after ten years ofAlzheimer’s disease, she was very differentfrom her real self. In a way, I felt I started tolose her long before she actually passed on.But she still left a huge gap in my life. It’snow two years since her death, and I havemanaged to pick up the pieces of my own lifeagain. Even though I will always miss her,the worst feelings are past now and I find Ican remember her as she used to be beforeshe got ill”

Staying in touch with thecare homeWhere you have played an active role inthe care of your relative while he or shewas in the care home, you may find ithard to adjust to no longer visiting thehome. You may have developedrelationships with members of staff andother residents. It may be possible foryou to stay in touch through attending acarers’ group where you can share yourloss with other carers; or you may beable to participate by becoming avolunteer or helper or a fundraiser.

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‘You never get used to it, it does not get anybetter but stay involved at what ever levelyou feel comfortable with - you have aunique contribution to make to theremaining life and eventual death of your loved one’Carer

You have given all the direct care andsupport you’ve been able to over the years.Visiting and staying involved is part ofcontinuing that care and support. If youhave been providing care to someone withdementia for a number of years, you are theexpert in that person’s care and have a greatdeal still to contribute, especially in the earlystages of the person’s stay in the care homewhen staff need to get to know andunderstand the person.

Why is it so hard to let go?Caring for someone with dementia has beenlikened to working a 36-hour day so it standsto reason that removing that workload willleave a huge gap in a carer’s life. You willhave to contend with a range of emotionsresulting from the decision for the person tomove to a care home, particularly if it takesthe person some time to get used to his orher new surroundings. Because the caringrelationship has changed, the person youlove may start to become more of a strangerto you; as their condition worsens, you mayfeel that you now have to do all the giving,as they can no longer share their emotionsand feelings with you in a meaningful wayand it becomes difficult for them to focus onanyone apart from themselves. It is the veryessence of the illness that robs you of theperson they were but does not rob you ofyour memories nor of the desire to keepcaring for the person.

How do you cope?Each person copes in different ways and no-one should feel pressurised into acting orreacting in a particular way. You should dowhat feels comfortable and right for you.Some people want to visit every day; othersfind that they feel happy visiting less often,particularly as the person settles in. Talkingthrough your feelings with family and friendsmay help, or you may prefer to talk to othercarers who have shared similar experiences.It may help simply to remember what aspecial person he or she is and that he orshe still needs your love and support in whatmay be their final journey.

Who is there to support you?Ask family and friends for help, explaining howyou are feeling; share your feelings if possiblewith the staff in the care home or withmembers of a local carers’ support group;contact the Dementia Helpline on freephone0808 808 3000; talk to health and social careprofessionals.

What services would be useful?Some carers have spoken about the supportwhich they received from social work andhealth care staff while the person withdementia was still at home, but this supportvanished once the person entered a care home.While it may not be possible for theseprofessionals to continue to offer the samelevel of support to someone no longer providingdirect care, they may still be willing to offersupport, perhaps over the phone, or may beable to put you in touch with other sources ofsupport such as your local Alzheimer Scotlandservice. For example, in Dumfriesshire,Alzheimer Scotland has a Carer Liaison Officerwhose role is to support bereaved carers orcarers whose relative has moved to a carehome. There are similar posts in other parts ofthe country.

There may be courses in your area aimed atformer carers involving learning a new activity,social and cultural events, reviving oldinterests. Younger carers who have perhapsgiven up work to care for a parent may wish toreturn to the workplace but may need somesupport in order to be able to do so. You canfind out what services are available in yourarea by contacting Carers Scotland or thePrincess Royal Trust for Carers – see Section12.

Getting back on your feetAlthough you may feel very tired after someonedies or goes into long-term care, the time willcome when you are ready to re-establish yourown life and move forward. You may feel veryunconfident at first and find it difficult to takedecisions, make polite conversation or copewith social gatherings. But don’t give up. Yourconfidence will gradually return. Take thingsslowly and try to ensure that you have plentyof support from family and friends,professionals and other former carers.Keep interests/hobbies/friendships going if you can. You can use these to help you adjustto when you are no longer providing day-to-day care.

Section TwelveFurther Reading and Sources of Information

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Further Reading

Alzheimer Scotland.

A Positive Choice: choosing long-

stay care for a person with

dementia.

Edinburgh: Alzheimer Scotland,

2003.

ISBN 0 948897 39 2

For a copy, contact the 24-hour

Dementia Helpline on Freephone 0808

808 3000. A single copy is free to

people with dementia and carers in

Scotland; others pay £2.00 per copy

(post & packing free)

MacKinlay, M.

Working with Dementia: a handbook

for care staff.

Edinburgh: Alzheimer Scotland,

2004.

ISBN 0 948897 42 2

Single copies are free to care staff.

Contact the Dementia Helpline,

as above.

Sources of Information andSupport

Alzheimer Scotland

22 Drumsheugh Gardens,

Edinburgh EH3 7RN

office: 0131 242 1453

Website: www.alzscot.org

e-mail: [email protected]

24 hour Dementia Helpline

0808 808 3000

Alzheimer Scotland is Scotland's leading

dementia charity. We provide services

and campaign actively to help people

with dementia and their families and

carers. We aim to be the national and

local voice of and for people with

dementia and their carers in Scotland;

to improve public policies for the benefit

of people with dementia and their

carers; and to provide and to secure the

provision of high quality services for

people with dementia and their carers.

Care Commission

Headquarters,

Compass House,

11 Riverside Drive,

Dundee DD1 4NY

Tel: 01382 207100

or lo-call 0845 603 0890

Website: www.carecommission.com

The Care Commission regulates and

inspects all care services in Scotland,

including care homes, using the National

Care Standards to ensure that service

users receive the same standard of care

wherever they live in Scotland.

Carers Scotland

91 Mitchell Street,

Glasgow G1 3LN

Tel: 0141 221 9141

Website: www.carerscotland.org

e-mail: [email protected]

Carers Scotland is the Scottish national

office of Carers UK. It campaigns for a

better understanding of the issues

affecting and services needed for carers

under three themes: equality,

empowerment; and partnership.

Cruse Bereavement Care Scotland

Riverview House,

Friarton Road,

Perth PH2 8DF

Tel: 01738 444 178;

fax: 01738 444 807

E-mail: [email protected]

Offers free information and advice to

anyone who has been affected by a

death; provides support and counselling

one to one and in groups; offers

education, support, information and

publications to anyone supporting

bereaved people.

Princess Royal Trust for Carers

Campbell House,

215 West Campbell Street,

Glasgow G2 4TT

Tel: 0141 221 5066

Website: www.carers.org

email: [email protected]

The Princess Royal Trust for Carers was

formed in 1991 at the initiative of Her

Royal Highness The Princess Royal. The

Trust provides training and support for

29 Carers Centres across Scotland, as

well as raising funds for development

work.

Relatives & Residents Association

24 The Ivories,

6-18 Northampton Street,

London N1 2HY

Tel: 020 7359 8136 (Advice Line)

fax: 020 7226 6603

Website: www.relres.org.uk

The Association aims: to offer support

and information to families, friends and

residents about issues affecting care

homes or nursing homes; to further an

active partnership between relatives and

care homes; and to spread good

practice in residential and nursing care

and influence policy and standards. The

advice line is best contacted between

9.30 and 4.30, Monday-Friday.

Remember that there are differences

between Scotland and England in

legislation and regulations if you are

seeking information about legal and

financial aspects of care home provision.

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This booklet is aimed at those who have been caring for a family member, partneror friend who is now in the later stages of dementia and where a decision hasbeen made to transfer the person to a care home setting. It particularly looks at:

� The emotional impact on the carer

� The impact of the move on the person with dementia

� The role of the carer in helping staff understand the person

� Practical ways to stay involved

� Making visits more enjoyable

� Preparing for the end of the person’s life

� Coping with bereavement

June 2005£2.00 (post & packing free)

Single copies free to people with dementia and carers in Scotland.

ISBN 0 948897 45 7

www.alzscot.org

This information is available in large print on ourwebsite www.alzscot.org

or from the Dementia Helpline

Alzheimer Scotland - Action on Dementia is a company limited by guarantee. Registered in Scotland No. 149069.

The company is recognised as a charity by the Inland Revenue. Scottish charity No. SCO22315.

Alzheimer Scotland, 22 Drumsheugh Gardens, Edinburgh EH3 7RN

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