Post on 04-Apr-2018
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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
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S ECTIO N HEADING
6
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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MEMORY LOSS AND CONFUSION
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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MEMORY LOSS AND CONFUSION
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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MEMORY LOSS AND CONFUSION
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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CHALLENGING BEHAVIOUR
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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CHALLENGING BEHAVIOUR
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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LOSING GR IP ON TH E P RESENT
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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LOSING GR IP ON TH E P RESENT
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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LOSING GR IP ON TH E P RESENT
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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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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LOSING GR IP ON TH E P RESENT
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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COMMON QUEST IONS ABOUT CARING FOR SOMEONE WITH DEME NTIA
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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COMMON QUEST IONS ABOUT CARING FOR SOMEONE WITH DEME NTIA
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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COMMON QUEST IONS ABOUT CARING FOR SOMEONE WITH DEME NTIA
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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