bupa care talking toolkit

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HOW TO KEEP COMMUNICATING WITH ALOVED ONE AS DEMENTIA PROGRESSES

TALKI NG TOOLK IT

www.bupa.co.uk/understanddementia


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CONTENTS

About dementia 3

Introduction 4

Using this guide 5

Memory loss and conusion 7

Challenging behaviour 13

Losing grip on the present 19

Physical railty and dependency 27

Frequently asked questions 30

Summary 34

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ABOUT DEMENTIA

There are about 800,000 people in the UK with

dementia and this is expected to double over the

next 40 years.

Dementia is a broad term which describes a set o

symptoms that develop as a result o damage to the brain.

The symptoms typically include memory loss, diculty

communicating and changes in mood. Dementia is a

progressive condition, which means it gets worse over time.

There are many dierent orms o dementia, including

Alzheimers disease, vascular dementia, and Picks

Disease. It is more likely to aect people over 65, but can

aect younger people too. In the later stages, people

with dementia become unable to do everyday things andwill need increasing amounts o support.

Early diagnosis o dementia is important as it can help you

or a loved one to access drugs that slow down the

progression o the condition, receive counselling, advice and

support, and importantly it can give you the time to plan

and make important decisions about the uture. I youre

worried about a loved one and their memory loss, its

important to see a GP as soon as possible.

ABOUT DEMENTIA

Bupa is the UKs leading provider o dementia care.

We combine experience and expertise to care or over

8,000 residents living with dementia, providing a sae,

comortable and stimulating environment in care homes

across the UK.

Bupas expertise in dementia care includes an innovative

person frst approach. Our care revolves around each

persons own needs, not fxed rules and routines.


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INTRODUCTION

Communication is vital to our lives and to our

relationships. It is so much more than just a way to

deliver actual inormation it is the way we express

what we think and how we eel. Losing the ability to

communicate is one o the most debilitating and isolating

things that can happen to a person. Watching a loved onelose the ability to communicate can be just as distressing.

For people living with dementia, and or their carers or

those close to them, communication can be a daily struggle.

Dementia is a progressive condition, and as it progresses, it

increasingly aects a persons ability to convey their thoughts

and eelings. The inability to communicate can leave carers

eeling that there is a great emotional distance betweenthemselves and their loved ones. This booklet has been

designed as a practical guide to bridge that gap and help

carers cope.

As the changes they see in their loved ones become more

acute, carers o people living with dementia need to be

adaptable. It is one o the hardest things to accept that what

worked or Mum fve years, fve months, or fve days ago,

might now be met with a blank expression or a lack o

understanding. But to give people with dementia quality o

lie, its very important that carers can recognise when

change is needed to better support the person they care or;

this includes the way they communicate.

There is no silver bullet to cure people with dementia, but it

is a condition which can be managed and, i handled

sensitively, it is possible or people with dementia to live

well. It is vitally important that as a carer, you have a sense

o what to expect. You are then best placed to eel that you

are doing all you can.

INTRODUCTION

Proessor

Graham Stokes,

Director o

Dementia Care,

Bupa.


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USING TH IS GUIDE

This guide has been developed or the riends and relatives

o people with dementia. Whether your loved one is at

home, or in a care home, each section o this guide will

provide practical tips on how to communicate with them at

every stage o dementia, advising carers on steps they can

take to connect with their loved ones, and to help them havea good quality o lie.

For ease o use, and to help carers navigate the dementia journey,

we have divided this guide into our stages, at each stage giving

examples o how the condition changes as it progresses. Its

important to realise that the speed at which people progress

through these stages can vary considerably and that the condition

will maniest itsel in dierent ways or dierent individuals.

The our stages o dementia are:

Memory loss and conusion: In the early stages,

characterised by memory loss and conusion, the person

living with dementia is at their most anxious about whats

happening to them.

Challenging behaviour: Increasingly, their conusionwill maniest itsel in dierent or odd behaviour which

is challenging or the carer to respond to.

Losing grip on the present: As the condition progresses,

the person with dementia will begin to move away

rom their present and retreat into the saety o their

established memories.

Physical railty and dependency: As dementia reaches

its most severe stages, the person becomes rail and

increasingly dependent on their carers or physical support.

USING THIS GUIDE

Page 7

Page 13

Page 19

Page 27


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S ECTIO N HEADING

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While it is common or

you to mislay your keys,

it is more concerning i

someone begins to orgetmeaningul inormation,

such as the names o

close riends.


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MEMORY LOSS AND CONFUSION

Memory loss, and the subsequent not knowing and

conusion it causes, is usually one o the frst signs o

dementia. At this stage, orgetulness and disorientation

can oten lead to anxiety and rustration, where the

person with dementia is aware something is wrong,

causing them to begin to eel they are no longer incontrol o their own actions.

It is important to note the dierence between common

moments o orgetulness which happen to everyone, and

more concerning signs o extraordinary orgetulness,

which could be indicative o the earliest stages o

dementia. For example, while it is common or you to

mislay your keys, it is more concerning i someone begins

to orget meaningul inormation, such as the names o

close riends. Common characteristics o people who are

experiencing this early memory loss include conusing

everyday tasks, such as storing ood in the cooker instead

o in the ridge, as well as muddled language, such as

using the wrong word at the wrong time.

While you may nd that conversations still fow relatively

well in this early stage o dementia, there are some simple

things you can do to help the person with dementia eel

that they are in control and to reduce any anxiety they may

eel when they conuse words or orget simple things.

MEM ORY LOSSAND CONFUSION

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Here are some tips on communicating, which you may

nd helpul:

Keep it simple and ocused on whats important

Dementia isnt just about memory. It can also aect a

persons ability to reason, to process inormation, and to

learn. This means the person with dementia may not only

have problems recalling words, they may also take longer

to understand.

Trytospeakslowlyanddistinctly,usingclearand

simple words.

Wherepossible,keepconversationbrief,asitsvery

easy or people with dementia to lose the thread o the

discussion i you talk or too long, and this can lead torustration or both o you.

Trynottoaskopenquestions,asthiscanbeconfusingfor

someone with dementia. All questions should have a direct

yes or no answer, or lead them to the answer. For example,

instead o asking What would you like or lunch? ask

Would you like a cheese sandwich?

Speakasclearlyaspossibleanduserealnamesforpeopleand objects rather than words like it, she or them. This

will help the person with dementia to keep a hold o the

thread o conversation. For example, instead o asking Do

you like the cake? ask Do you like it?

Try not to ask open questions, as this can be

conusing or someone with dementia.

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Be patient

Trynottonishthepersonssentencesforthem.Ifyou

can sense they are struggling to fnd a word, you could ask a

question which might provide a helpul prompt. For example,

i they are saying I want to go I want to go..., you could ask

Do you want to buy something? The prompt should alwaystake into account the context. Has the person put their coat

on, or are they hovering by a door? Is it a time o day when

they usually do something?

NeversayIvetoldyouthisbefore.Itsimportantto

remember that i the person starts repeating themselves

or asking you the same question, its likely they have simply

orgotten they have asked you beore, due to the memory

issues associated with their condition.

Givethepersontimetorespond,andwhileitmaybe

hard at times, try not to get angry or rustrated i they

dont understand.

EVEN SIMPLE THINGS CAN MAKE A BIG DIFFERENCE

Try to remove distractions such as TV or radio when you

are trying to communicate.

Face the person and use their name, to ensure you have

their attention.

One-to-one conversations will be easier, but i you cant

avoid a group situation, try to ensure only one person

speaks at a time.


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I they get muddled, or begin

to say things you know to be

incorrect, try not to directlycontradict them.

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Reduce anxiety

Rememberthatasthepersonwithdementiasshort

term memory worsens, they are likely to eel anxious,

conused and sel-conscious. I they get muddled, or

begin to say things you know to be incorrect, try not to

directly contradict them this will only increase theireelings o conusion.

Insteadofcontradictingordirectlycorrectingwhatthey

say, it is more productive to accept what they say as

their idea o the truth, and move the conversation along.

Being told they are wrong is likely to conuse them urther,

and will do little to soothe their anxiety.

For example, i your mother is convinced she has passedon a message or given you a letter to post, but you know

she has defnitely not, dont make a big issue o this.

Instead, make light o it and move the conversation on:

Do you know Im so scatter brained nowadays I cant

remember. I must be doing too much. Do you know,

only yesterday...

One o my residents regularly believes he has let hiswallet at the pub. Rather than distressing him urther by

telling him he is wrong, I simply let him know Ill call in at

the pub and collect his wallet or him. This reduces his

anxiety at that moment and he soon orgets that he has

asked the question.

Annie James, home manager, St Georges Nursing Home


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Many people living with

dementia have no concept

o time. I they dont

appear to be willing to

communicate with you atthat moment, or want to do

something dierent, dont

push them.


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CHALLENGING BEHAVIOUR

As dementia progresses, the changes in the person

living with the condition become more marked.

This may maniest itsel in obvious physical signs,

such as an unkempt appearance or weight loss

(people with dementia oten orget to eat). It could

also become evident in behavioural changes, such asbecoming verbally or even physically aggressive

oten as a result o eeling rightened or rustrated.

The person with dementia may need more support

to help them manage their day-to-day living, or

example, needing reminders to eat or wash.

People living with someone with dementia may also

notice more subtle changes, such as walking about in

the middle o the night or erratic eating habits.

It can be distressing to see such changes in the behaviour

o a loved one, and eelings o rustration are not

uncommon or those caring or someone with dementia.

It can be very hard, but understanding that their

behaviour is the result o upset, insecurity or an attempt

to tell you what they want, is the key to communication.

BEHAVIOU R WH ICHCHALLENGES US

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NEW IMAGE

Seemingly straightorward

requests, such as Please

make me a cup o tea,

can cause signicant

rustration or the person

with dementia.

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Know when to walk away I someone is physically or

verbally aggressive, take a deep breath and walk away.

Remember it isnt easy to live with dementia. You can

always go back and try again another time.

Have someone to support you In all stages, as the

person with dementias condition starts to change, its

important to have someone to share your concerns with.

Having someone to share the burden o caring and give

you a break rom time to time is incredibly valuable.

Make sure you have a amily member or

riend who you can conde in. You need

to look ater yoursel.

Dont hide the dementia You may fnd it helps to keep

riends, colleagues or other amily members regularly

updated about the person with dementias condition,

so they make allowances and are more accepting o

behaviour which appears to be unusual or strange.

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During the third stage o dementia, the person living

with the condition may start to lose their grip on the

present, or even on reality as you know it. As they

become more conused in their day-to-day lives, the

person with dementia may begin to retreat into the

saety o established memories. They may also becomeconused by amiliar aces or places, mistaking their

daughter or their wie, or thinking they are in another

place or time.

This stage can eel particularly hard or carers, as the

person with dementia both becomes more dependent,

and also loses awareness o the world and people

around them, as well as any understanding o their

condition. The burden increasingly alls on the carer, andits common to eel very isolated at this stage. You may

eel you have lost your loved one, however

communication at this time remains more important

than ever.

Relatives o people living with dementia can oten eel

real distress when their loved ones ask dicult questions,

such as asking to see a mother who has passed away

or believing they need to go to work or collect children

rom school. Dealing with such issues can be dicult but

here are some techniques you can use to help deal with

such situations.

We look ater a lady with dementia who sometimes

becomes conused, thinking that our care home is her

previous house. She becomes verbally very aggressive

to other residents and staf, demanding that they leave.

We know that telling her the truth only exacerbates the

problem, so instead we divert her attention by taking heron memory walks around the home, stopping of at various

points o interest along the way. These could include

anything rom old photos to pictures o historical events,

to items o personal meaning to her.

She was actually a recorded soprano in her younger

days, so we play music to her. And very quickly, she

orgets what upset her, and can be returned to her

ellow residents with a smile and no mention o her

previous outbursts at all.

Sandra Holt, home manager,

Maes-y-wennol Residential Home


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Remember that no solution

is a permanent solution, so

while one approach might

work one day, a dierent

approach may be required

the next time.


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LOSING GR IP ON TH E P RESENT

LOSING GRIP ONTHE PRESENTDuring the third stage o dementia, the person living

with the condition may start to lose their grip on the

present, or even on reality as you know it. As they

become more conused in their day-to-day lives, the

person with dementia may begin to retreat into the

saety o established memories. They may also becomeconused by amiliar aces or places, mistaking their

daughter or their wie, or thinking they are in another

place or time.

This stage can eel particularly hard or carers as the

person with dementia becomes more dependent, and

loses awareness o the world and people around them,

as well as any understanding o their condition.

The burden increasingly alls on the carer, and its

common to eel very isolated at this stage. You may eel

you have lost your loved one, however communication

at this time remains more important than ever.

Relatives o people living with dementia can oten eel real

distress when their loved ones ask dicult questions, such

as asking to see a mother who has passed away or believing

they need to go to work or collect children rom school.

Dealing with such issues can be dicult, so here are some

techniques you can use to help deal with such situations.

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Join their world

Firstly,trynottocontradictthepersonwithdementia

as this could increase their anxiety. Remember that, at

that moment, what they are saying is what they believe

to be true.

Jointheirworld.Focusonhowyoucanputthem

at ease, thus reducing their anxiety. For example, i they

constantly ask or their mother, who you know is deceased,

rather than correcting them, you could simply respond

Tell me about your Mum, what was she like?

Donotfeelguiltythatyouarelyingtothemor

encouraging what may seem to you a antasy. I you can

make the person with dementia eel content, relaxed andat ease rather than anxious, sad or distressed, you are

simply doing the best thing or them. This is known as

collusion; not bareaced lying, but a way to give someone

what they do not possess, peace o mind.

I knew an 84 year old woman who thought her son was

seven years old. She reacted with ury when she was told

that he was much older. Instead the carer could have said,

Have you any photographs o him. Id like to see. I bet he

was a handul, or simply, Your son. You must be really

proud o him. These are eelings which are untainted by

the passage o time.

Proessor Graham Stokes

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Alwaystrytofocusontheemotion,ratherthantheactual

communication. I they say they need to go to work, why

could this be? Is it that they are remembering a time when

they elt useul?

Trytoputthemateasebylookingatsomefamiliar

photographs or talking about something you know

they love.

When you understand the meaning behind

their behaviour, youll be more able to fnd

solutions to help them cope.

I remember a resident who used to wake up

at 4 oclock in the morning and try to leave the home

through the ront door. We realised that this was because

she used to live on a small holding, and she was heading

out to collect the eggs. So we let her coat on a hook

by the door, and put some boiled eggs in a sae place

nearby. Once she picked them up, she elt like shed done

her job or the morning, and we could bring her inside

or a cup o tea.

Dawn Harbour, home manager, The Gables Specialist

Nursing Home


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Creating connections

It is a common misconception that when someone has

dementia, they lose their personality. However this condition

does not change someones personality, rather, it aects

their ability to recall memories, process and recall language,

or dierentiate between past and present. The result is that

their behavior and how they express their emotions changes,

giving the impression their personality has changed.

As a result, the most successul connections are the ones

that carry deep-seated meaning or the person with

dementia.

I you have reached a point where you eel your relationship

with your loved one is diminishing, or you eel you arestruggling to communicate or make a connection, here are

some tips that might help strengthen your relationship.

Ifyouengageinaconversationwithsomeonewithdementia,

make sure it is meaningul to them. Talk about things they like

talking about, whether this is sport, their amily or another

hobby or pastime. Flippant conversations and statements

can conuse them and increase their anxiety.

INCREASE COMFORT, REDUCE ANXIETY

As dementia progresses, so might anxiety. As the person

with dementia begins to lose grip on reality, they no

longer have the knowledge o what is happening, where

they are or who is around them. At this stage in the

journey, its vitally important to ocus on how you as a

carer can reduce that anxiety.


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S ECTIO N HEADING

I you can make the person

smile, even or a moment,

the contact will have been

worthwhile.

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LOSING GR IP ON TH E P RESENTLOSING GR IP ON TH E P RESENT

REMINISCE TOGETHER

Reminiscing can bring back happy memories or our

residents and create a sense o wellbeing. So in BupaCare Homes we encourage amily members and loved

ones to help residents put together a Memory Box flled

with meaningul items such as photographs, keepsakes

and other special objects collected over the years.

These also can help them recognise their room. This is

something simple that anyone could do at home to create

connections with their loved ones.

Usememoriestoconnectwithyourlovedone.While

recent memories can be a struggle or people with

dementia, they can oten recollect times rom their

youth and early adulthood.

Anothercommonmisconceptionaboutdementiaisthatif

the person no longer appears to respond, then there is no

point in engaging. However, i you can make the person

smile, even or a moment, the contact will have been

worthwhile. Think about what would make them come

alive. This could be playing a meaningul piece o music

that triggers happy memories, or watching an old flm rom

decades ago.

Weallhavebaddayswhenwedontfeelliketalking,oreel irritable. Do remember that this is also true or people

living with dementia, so sometimes communication may

not be a success. I this happens, try again later.

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Looking ater our residents means living with them at

that moment in time whatever that moment happens

to be or them. Recently the husband o one o our

residents passed away, and she oten asks us about him.

We understand her character, and knowing that she has

a lovely sense o humour, when she asks i her husbandis out we may say something like Hes probably

spending too much money! which makes her laugh.

Rather than upset her, we know that its sometimes kinder

to ollow on with her reality.

Dawn Harbour, home manager, The Gables Specialist

Nursing Home

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S ECTIO N HEADING

I told Georey it

was no longer about

supporting, caring,

doing, it was aboutbeing. Not even talking.

Just being close,

sitting there, sharing

a view, holding hands.

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PHYSICAL FRAILTY AND DEPENDENCY

In the most severe stages o the condition, the person

with dementia has now lost the physical capacity to care

or themselves. The person may appear to be completely

disconnected rom the world and people around them,

and may be almost totally unable to communicate.

Because o their physical railty and dependency, theperson may require more care than is possible to provide

single-handedly at home, and may, thereore, be living

in a care home.

At this stage o dependency, communication may be possible

only through physical contact; however this can make a huge

dierence to the person with dementia. This section provides

some advice on maintaining that important connection with your

loved one, without the use o language.

Firstly,rememberthatevenifthepersonwithdementiais

no longer able to communicate with you by talking, your

physical presence alone may be enough to reassure them

or put them at ease.

Likewise,eveniftheycannotrespondwithwords,showthem

how you eel. Sometimes holding hands, gently touching orhugging will get the person with dementia to respond.

Itmaybeanobviouspoint,butmaintaineyecontact

with the person you are communicating with. Its a simple,

yet eective way to show you are engaged, and trying

to connect.

PHYSICAL FRAI LTYAND DEPENDENCY

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PHYSICAL FRAILTY AND DEPENDENCY

Ifyouretryingtogetaresponsefromthepersonwith

dementia, show them what you mean rather than asking a

question repeatedly. For example, i you are asking i they

would like a sandwich, or a bowl o pasta, show them the

ood to reinorce the question.

Manyofususegesturesinourday-to-daylivestomake

communication easier. Think about how you use hand

signals in a restaurant to demonstrate that you would

like the bill, or signal that youd like someone to call you?

This is a simple way to make communication clearer and

easier or the person with dementia. For example, asking

whether they are cold or hungry could be coupled with the

appropriate actions to emphasise the question.

Ifyouarestrugglingtoengagewiththepersonwith

dementia and eel at a loss as to how to make a

connection, you could use prompts such as pictures or

old photographs.

The simple action o sharing a moment together

or reminiscing over amily photographs may

help you to maintain your relationship.

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COMMON QUEST IONS ABOUT CARING FOR SOMEONE WITH DEME NTIA

Communicating with someone with dementia can be

rustrating and tiring, and at times you may wonder

whether your eforts are worthwhile. However you are not

alone and many o the questions you may want to ask are

likely to have been asked beore.

Here are some o the common questions, encountered by

Bupa dementia care experts on a regular basis, answered by

Proessor Graham Stokes.

Q: I eel I dont know how to talk to my husband/wie/

mother anymore. How can I reconnect?

A: Its normal to eel araid that you no longer know how to

connect with your loved one, particularly i they have

reached a stage with their dementia where they no longer

appear to understand or seem incoherent. The most

important thing to remember is that they are still the same

person. Although they may seem to have little understanding

or ability to communicate, they may respond to aection

and enjoy interests that have always been a part o their lie.

Think about the things they used to enjoy, whether that was

music, sport, watching TV or gardening, and try to engage

on that subject. You could also use visual or other sensory

stimuli to engage with them, such as sitting in the garden

where smells, colours and sounds come alive. Making a

happy meaningul moment, even i it is just or a short period

o time, is hugely benefcial to the person even i minutes

later it is orgotten.

FREQ UENTLY ASKED Q UESTIO NS

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Q: My mum, who has dementia, keeps asking or my

Dad. Should we tell her that he has died?

A: This is not an uncommon question asked by people with

dementia and it can be very distressing to have to answer

again and again. I a loved one has died recently, you could

remind the person with dementia o this act a ew times tosee i they remember; however, it is important to use your

judgment to avoid causing unnecessary upset.

Consider each response you give as a way to reduce the

persons anxiety. I the person genuinely cant remember,

repeatedly having to break the news that someone has died

can be as painul as the frst time they heard it because, to

them, it is the frst time. Causing such distress and grie isnt

necessary, so instead, try to put them at ease. You can avoid

the direct question by engaging them with conversation. In

this instance you could say, or example You and Dad used

to go walking together didnt you? Where was your avourite

place? Lets see i we can fnd some photos.

Dont eel bad that you have not given the whole truth, as

you have the persons best interest at heart and are ocusing

on whats important reducing their anxiety.


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Q: I eel mysel getting angry when I have to repeat

mysel or the hundredth time and this makes me eel

guilty. What can I do?

A: Caring or someone with dementia can be rustrating and

tiring, so its no wonder people eel angry and irritable rom

time to time. No one should sacrifce themselves entirely orsomeone else, nor should you eel guilty i you want some

space or yoursel, or a day o to do something un. Its so

important to make time or you.

Having time away rom caring doesnt necessarily have to be

physical it can simply be having some time alone at home

to read, relax or even sleep. Many people fnd that sharing

the load o caring or someone with dementia is valuable.

I you dont have riends or relatives available to support you,

look or a care home near you which oers short term or day

care to support the carers o people living with dementia. I the

person with dementia is already in a care home, dont eel that

you need to visit every day. Take some time out, do something

or yoursel, and youll eel all the better or it. Its also

important that you have someone to talk to, so you can share

your thoughts and concerns.

A ew hours o now and then is the least you deserve;

eeling guilty is common, but your health and wellbeing

needs to be a priority. Visit www.carewelluk.org or more

inormation on looking ater your own health whilst caring

or someone else.


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Q: My partner wont let me hug them anymore. I eel

as though they dont love me anymore. Why have

they changed?

A: It can, understandably, be distressing to see a loved one

distance themselves physically and emotionally rom you.

However its important to remember that this is not apersonal attack on you it is the dementia aecting their

memory. It could be that they are conused about who you

are and its only natural that you wouldnt welcome

aection rom someone you dont know well. Or perhaps

they are mistaking you or another relative, who they

wouldnt usually hug?

It doesnt mean they will never want aection rom you, but

you may need to judge careully what is appropriate

depending on how they are, and the stage o their dementia.

Its also important to remember that people with dementia

have good and bad days, and sometimes they might just eel

tired, rustrated or conused.

Q: My Dad wont answer to the name Dad anymore,

why is this?

A: I your Dad doesnt recall that he is a ather, or believesyou are someone else, such as his wie or mother, it may

seem strange that you are addressing him by the name Dad.

Instead, try using his frst name, or a nickname that he is

used to others using.


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SUMMARYCaring or someone with dementia can be an emotional

rollercoaster. The distress elt by many when the person

they know and love is no longer able to communicate and

connect as they once did should not be underestimated.

But you can make a dierence by understanding more

about how dementia aects behaviour, while also holding

onto the knowledge that your loved one is still the same

person. There will be good days and bad days, and days

where you eel like giving up, but communicating remains

an important way to maintain your relationship.

I hope that this guide has provided some helpul advice

and support, wherever you are in the journey.

Proessor Graham Stokes, Director o Dementia Care, Bupa.


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For other useul sources o inormation

and support, please visit

www.bupa.co.uk/understanddementia

Bupa 2012

bupa care talking toolkit

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