Caring For Someone With Dementia

Aged Care
Caring for
someone
living with
dementia
bupa.com.au/aged-care
Caring for someone living with dementia
Contents
Introduction
What is dementia?
How can I tell if someone has d

ementia?
Different types of dementia
11
What should I do if I think a relative or friend has dementia?
15
17
Helping with managing finances
24
Communication
27
Eating and drinking
32
Activities
39
Dressing and personal care
43
Washing and bathing
46
Using the toilet and continence problems
48
Coping with unmet needs
51
Getting help
54
Taking care of yourself
60
Thinking about residential care
64
Visiting someone in an aged care home
69
Checklist to find the right aged care home
75
Useful contacts
86
Introduction
You are probably reading this booklet
because a relative or friend has or may
have dementia. This may be something
you suspect or perhaps they have been
diagnosed by a health professional.
Either way, this is likely to be a
worrying time for both of you.
We know that much of your

concern or fear may come from
not knowing what is likely to
happen in the future. This guide
will provide you with some
useful information and how you
can help look after your relative
or friend. We also remind you
to look after yourself because
we understand that caring for
someone living with dementia
can be challenging.
There is also a Useful Contacts
section at the back of the book
which gives details of further
sources of information and
support.
Bupa Aged Care is a leading

provider of dementia care in
Australia. This guide draws on
our wide experience of caring
for people living with dementia
and our understanding of the
sadness and stress it can cause
for relatives and friends. We
recognise that every person
living with dementia is different
and every carers situation is
different, but we hope you
will find some useful advice,
information and support in
this book.
What is
dementia?
Dementia is a term used
to describe the loss of
memory, reduced language
skills, impaired reasoning
and loss of daily living
skills that arises because of
irreversible and progressive
deterioration of brain
function. Changes to
behaviour and emotions
are also common. There
are more than 100 different
types of dementia.
The most common types are
Alzheimers disease, vascular
dementia and dementia with
Lewy bodies.
An individual may have

a combination of different
causes of dementia, in particular
Alzheimers disease and vascular
dementia. Initially, each of
these diseases tends to affect
particular areas of the brain and
will cause different changes
in a persons behaviour.
In Australia, dementia affects
approximately one person in
10 aged over 65 years, and
almost half of people over 80.
In 2010, over 257,000 people
were affected by dementia,
and by 2030 this number
is predicted to rise to
approximately 591,500 people.
You are not alone in caring for
someone living with dementia.
How can I tell

if someone
has dementia?
Although there are common
symptoms of dementia, each
individual can be affected in
different ways.
Depending on the type of
dementia and its progression,
symptoms can include:
Memory loss especially for
more recent events. In the
early stages of dementia, the
person may misplace objects
or forget what they were
planning to do
Difficulty finding their way
around, especially in new or
unfamiliar surroundings
Problems finding the correct
words or understanding what
others are saying to them
Poor concentration
Problems learning new ideas
or skills
8
accurate diagnosis made

by a specialist.
Difficulties with thinking, such

as having trouble using logic
during a discussion
Problems in perception and
judging distance, for example,
missing the edge of a chair
when attempting to sit down
Changes to physical
abilities, such as difficulties
coordinating movement
during domestic chores.
Psychological changes, for
example, becoming irritable,
saying or doing inappropriate
things or becoming suspicious
or aggressive.
However, these symptoms can
be caused by other health
issues, such as stress,
depression, diabetes, vitamin
deficiency, infection and many
other illnesses. It is therefore
always important for a person to
be examined by a doctor and an
The later stages of dementia

are associated with severe
cognitive, psychological,
communication and physical
problems, including loss of
speech, immobility, incontinence
and frailty.
Throughout the journey of
dementia psychological changes,
for example, becoming irritable,
saying or doing inappropriate
things, or becoming suspicious
or aggressive can occur. These
are not so much symptoms
but indications that the person
is struggling to cope and
understand what is happening
around them.
It can be difficult to determine
exactly when dementia starts,
as it usually begins with mild
forgetfulness or changes in
behaviour. Although the speed
of progression varies widely
between different people, it
typically takes 8-12 years from
diagnosis to severe dementia
and death. This time frame
varies for people diagnosed
depending on the type of
dementia and age.
There is no cure for dementia,

however medications can be
prescribed for people living
with mild to moderate dementia
that may slow down the rate of
decline for a number of months.
Research into finding a cure
is continuing daily with many
studies being completed around
the world.
It is often the case in dementia
that short term memory is the
first to deteriorate.
People may not remember a
recent family event or the details
of an upcoming appointment.
With dementia, what you learn
first is often what you lose last.
The information and skills that
are learnt at a young age stay
with a person the longest.
These skills and information are
described as being stored in
long term memory. A person
living with dementia may not
be able to remember what
happened a few moments ago,
yet they can recall detailed
information about their life as
a child. As the disease
progresses their long term
memory may also fade.
We give some practical tips for

coping with the symptoms of
dementia later in this book. But
it is important to remember that
even as someones memory and
skills deteriorate, the person

you care for is still the same
individual with their own views,
reactions and feelings.
Different types
of dementia
Alzheimers disease
Alzheimers disease is the most
common type of dementia. In
Australia, about 50-70 percent
of those living with dementia
have Alzheimers disease.
Alzheimers disease causes the
number of nerve cells in the
brain to gradually reduce and
the brain shrinks. The nerve
signals that are essential for
activities such as language and
physical movement become
increasingly impaired. These
nerve cells cant be replaced,
so the functioning of a person
living with Alzheimers disease
declines as more cells are
destroyed.
Alzheimers disease usually starts
with forgetfulness, problems
with working things out and
difficulty in finding the right
words. Family or friends may
also notice changes in mood.
For example, some people may
appear to be depressed.
10
As the disease progresses,

memory loss becomes worse
and people have difficulty
learning new skills and
information. Changes may
become more obvious with the
progression of the condition
where people say or do things
that are out of character.
Everyday tasks such as getting
dressed, washing, cooking,
travelling and handling money
may become difficult.
Disorientation is also common
and this can cause people with
Alzheimers disease to lose their
sense of time and place. For
example, they may get dressed
in the middle of the night
thinking that it is morning. New
surroundings and new people
may be confusing and it could
become difficult for people to
recognise previously well known
family and friends.
Some people in the early stages
of Alzheimers disease are aware
of their condition while some
11
are not. Insight and awareness

generally become more
impaired with the progression
of the disease.
During the late stages of the
disease where impairments
and changes are more severe,
people with Alzheimers disease
may become totally dependent
on others for their care.
Vascular dementia
(Multi-infarct dementia)
Vascular dementia, sometimes
called multi-infarct dementia,
accounts for more than 20
percent of all dementia cases.
The disease process begins when
small blood vessels in the brain
become blocked. These
blockages prevent oxygen from
reaching the nearby brain cells,
leading to their death. Therefore,
vascular dementia is essentially
caused by tiny strokes in the brain.
Vascular dementia can usually
be identified by a sudden
change in a persons behaviour,
speech or functioning. The
exact change will depend on
the specific area of the brain in
which the small strokes have
occurred. As more of the brain
12
is damaged by tiny strokes,

a persons memory, language
and thinking progressively
declines. Vascular dementia
can be treated with therapies
designed to reduce the risk
of further strokes in the brain,
but there is no cure for the
condition.
Dementia with Lewy bodies
accounts for approximately
10-15 percent of all cases of
dementia in older people.
Lewy bodies are tiny protein
deposits found in nerve cells.

Their presence in the brain
interrupts the action of chemical
messengers, disrupting normal
brain function. There are
similarities between this
condition and both Alzheimers
and Parkinsons disease.
causes an impairment of
memory, language and
reasoning. It progresses
at about the same rate as
Alzheimers disease. However,
unlike Alzheimers disease, the
condition is characterised by
pronounced fluctuations in
attention and lucidity. Therefore,
it is important to be aware that
the abilities of a person living
with Lewy body disease can
change frequently, almost by
the hour. A person may be able
to carry out an activity and
then suddenly be unable to do
so. Without an understanding
of the disease, this can be
misinterpreted as laziness by
other people.
Like Alzheimers and
Parkinsons disease, dementia
with Lewy bodies can affect
the areas of the brain that
control movement, balance,
vision and visual recognition
(knowing what it is that we

see). As a result, people with
Lewy body disease may have
difficulty moving, resulting in
falls, slowness, stiffness and
tremors. They may experience
problems judging distances
and when walking on uneven
or unpredictable surfaces.
They may also experience
hallucinations, which can
(understandably) cause the
person to become agitated and
distressed.
Other types of dementia
There are other types of
dementia, including those
grouped under the heading
of frontotemporal dementia.
People with these conditions
present with initial changes
in behaviour, personality
and language, more so than
forgetfulness. People who
consume extreme amounts of
alcohol over a long period of
time can also develop dementia.
Some people may also
develop dementia as a result of
Creutzfeldt-Jakob disease or
AIDS/HIV, Parkinsons disease,
Huntingtons disease, Multiple
Sclerosis, motor neurone
disease and Down Syndrome.
13
What should I do if
I think a friend or
relative has dementia?
If you are concerned about a
friend, relative or even yourself,
then seeking help as soon as
possible is advisable. Your
doctor should be the first point
of call. Your doctor will want
to rule out other diseases or
conditions that may produce
similar symptoms.
An early diagnosis can:
Help the person become
involved in making decisions
about their future care no
decision about you, without
you
Help you to identify sources
of support and advice
Help you to cope with caring
for the person
Enable the person to benefit
from the current treatments
available
14
Help you to plan for the

future.
How is dementia diagnosed?
If a doctor suspects that
dementia might be present, they
will refer a person to a specialist
(a neurologist, geriatrician or
psychiatrist) or specialist service
for diagnosis. It is important
to remember that you are
entitled to ask for a referral
to a specialist or for a second
opinion.
All types of dementia have
similar symptoms and it can
sometimes be difficult to tell
which type a person has.
A diagnosis is usually made
based on a number of tests
and procedures. This includes
the assessment of a persons
cognitive abilities with tests that
measure memory, language and
concentration.
15
A thorough physical and

neurological examination may
be undertaken to rule out
other illnesses. Blood and urine
tests may be completed to
help exclude other causes of
confusion and memory loss.
Brain scans may also be
performed, using technology
such as computerised
tomography (CT) or magnetic
resonance imaging (MRI) to
investigate possible brain
changes.
The results of investigations are
considered in the context of a
persons history of symptoms
and other medical conditions.
Therefore, input from the person
and their family are integral to
the diagnosis.
Getting the most from
a consultation
If you are supporting the person
being diagnosed, or are seeking
advice because youre worried
about someone else, it may
be useful to write down the
symptoms you have observed
and the questions you want to
ask before visiting the doctor or
specialist. It can be difficult to
16
remember everything you want

to say during a consultation. You
may also want to write down
important points that the doctor
tells you. Dont be embarrassed
to ask the doctor to explain any
words or phrases that you dont
understand.
As dementia progresses, the
needs of a person will change
and they may need to be
regularly reassessed. A diagnosis
of dementia can be very
distressing for the person and
their family. However, in some
situations, understanding that
there is a cause for the changing
behaviour can be comforting or
come as a relief.
The needs of a person will
change and need to be
regularly assessed.
Caring for
someone living
with dementia
Seeing the individual not the disease
This book contains a range of advice and suggestions
on caring for someone living with dementia. But
there is one principle that runs throughout; the
person living with dementia is still the same person,
however now they have a disease. Separating the
person from the condition will help you to treat them
as an individual and with respect. We say, Person
First, dementia second.
By remembering the disease and resulting changes
are not their fault, you may find it easier to be
sympathetic and patient, even when you are frustrated,
tired or stressed.
The person living with dementia is not being difficult,
lazy, demanding or even just getting old. They are
attempting to cope with challenging and frustrating
changes to their abilities and lifestyle.
Individual likes and dislikes
We are individuals with our own unique likes, dislikes,
feelings and experiences.
17
Maintaining a sense of self and

identity can help the person
living with dementia to feel
more confident and reassured.
For some, this can mean
completing the activities they
are used to or following the
same routines. Remember that
even though a person may
not be able to complete an
activity like they used to, it is the
process and resulting feelings of
satisfaction that matter.
Wherever possible, appreciating
and following the individual
preferences of the person living
with dementia may help you
to find strategies that make
your caring role easier. As the
person living with dementia
wont necessarily be aware of,
or understand their condition,
this can lead to arguments
and upset for both of you. For
example, if someone wants
to eat lunch now or wear a
cardigan that doesnt match
with their pants, enabling them
to do so might make life calmer
and happier for both of you.
Explaining it to others
The actions of the person you
care for may raise questions
18
from other people. It is common

for family, friends, neighbours
and other people who witness
strange behaviours to show
concern.
Some children feel its their

fault, or the persons anxiety,
frustration or anger is directed
at them, so reassurance may
be needed
Try to respect the privacy and

dignity of the person you care
for when explaining the
situation. However, rest assured
the majority of people know
another person living with
dementia or have experience
caring for someone living with
dementia, so you will be met
with understanding. They may
become a great source of
advice or support.
Encourage children to
ask questions so you can
understand what theyre
concerned about
It may be more difficult to

explain the situation to young
children. They may have a
close relationship with the
person living with dementia or
be confused by their strange
behaviours.
Here is some advice that
may help:
Try to be as honest as you can
Explain that the person is ill
and might act strangely or be
forgetful
Try to focus on the things the

can still do, not just the things
they have trouble with
Encourage and support the
child to spend time with their
relative
Try to find activities that they
can still do together, like playing
cards, gardening and talking
about events from the past.
You can ask if they would
like to write a letter to their
grandparent, aunty or uncle
living with dementia, saying
how they feel
In the early stages of dementia
the person may be able to cope
relatively well on their own. This
might be improved by some
adaptations around the home
and regular visits by others. This

may continue to be the best
option for a period of time,
ranging anywhere from a few
months to a few years. However,
dementia is a progressive
condition and the persons
symptoms and abilities will worsen.
By preparing and planning early
for their inevitable increased
dependency, you will have
more time to consider the best
options for all concerned.
Many people have family
experience in caring for
someone living with
dementia and will be very
understanding. Familiar
surroundings and routines
Familiar surroundings and routines
can be reassuring for the person
living with dementia and they may
be happier living in their own
home for as long as possible.
People living with dementia
often respond well to routines,
which can help to provide a
sense of meaning and security.
Assisting the person to maintain
a routine through modelling
and demonstrating a task may
help to prompt the individual
to remember to shower or eat.
19
Friendly prompts about the times

of various activities, such as
visiting a friend or putting the bin
out may help them to structure
their day. Prompts can be
provided verbally or by leaving
a diary open in a visible place or
writing information on a notice
board. Putting associated items
together can help prompt tasks,
such as the tea and coffee next to
the kettle, or washing powder on
the washing machine. A person
living with dementia may find it
difficult to learn new things, so
moving items that have been in
the same place for years may
be confusing.
Labelling cupboards, drawers
and storage boxes with words
and pictures or photos may also
be helpful prompts.
A large clock can also be useful
in orienting a person as they can
easily see the time and match
this to their daily activities. Try
to get a clock that displays the
date and day of the week so they
can keep track of important
information.
Speak to gas, electricity
and water companies about
services they offer for
customers with disabilities.
20
Safety and security

When a person living with
dementia lives alone, family
members often have concerns
about their safety and ability
to cope. People living with
dementia can unknowingly
place themselves in danger due
to their reduced concentration
and impaired judgement.
They may forget to close doors
and windows before they go
out or go to bed. They may
lock themselves in the house if
they feel frightened or, because
they have trouble recognising
people, they may welcome
strangers into their home.
Despite these obstacles, there
are many things that can be
done to enable a person living
with dementia to stay at home
for as long as possible. It might
be a good idea for a trusted
neighbour to have a spare
set of keys and keep an eye
out for any unknown visitors.
If you know and trust local
work people, such as postmen,
gardeners or visiting nurses,
explain the situation to them so
they can keep an eye out.
21
Here are some points on safety

that may be useful:
You might need to place
a list of important numbers
in large print close to the
telephone so it can be used
by the person living with
dementia or a neighbour
in an emergency
Your local police may offer
security advice. It can be
useful to make them aware
of the persons situation,
particularly if the individual
gets lost walking outside
Speak to gas, electricity and
water companies about
services they offer for
customers with disabilities.
They may be able to install
safety devices or adapted
controls, and ensure those
who do call understand the
situation
Gas appliances can potentially
be dangerous when used
by people with memory
problems. You may want
to consider replacing gas
cookers or fires with electric
ones. If so, try to do this in the
22
early stages of dementia as

the individual is more likely
to learn how to use them
Make sure boilers and water
heaters are regularly serviced
by a professional
Install smoke and carbon
monoxide detectors
Check older fireplaces,
heaters and equipment like
irons and toasters to ensure
they are safe. For example,
check for an automatic cut-off
which prevents overheating.
Replace or repair any devices
that are unsafe, and fit guards
to heaters and fires to help
prevent accidents.
To prevent flooding, taps can
be adapted to only let out a
set volume of water. It is also
possible to have temperature
control devices installed to
reduce the risk of burns
Removing or changing locks
from bathroom doors and
bolts from external doors
may make access easier in
emergency situations.
Technology that can help a

to stay at home can be accessed
through your local Independent
Living Centre. For further ideas
about assisting someone living
with dementia to stay at home,
you can access the website
dementiatechnology.org.au.
Your local Commonwealth
Respite and Carelink Centres are
another good resource for home
adaptation and modifications.
See the Useful Contacts list at
the back of this book for further
details.
Personal alarms
Some people might find they
have an increased peace of
mind by having a home personal
alarm. This immediately links
you with a support person who
can action additional support
in the form of ambulance or
police. Information about these
types of services is available
through your local Alzheimers
Australia branch, Independent
Living Centre or personal alarm
service provider. See the Useful
Contacts list at the back of this
book for further details.
Driving
A diagnosis of dementia does
not mean that a person must
stop driving immediately.
However, it is likely that as
dementia progresses, a person
will lose their ability to drive
safely. In all states and
territories, apart from Western
Australia, drivers have an
obligation to their licensing
authority to report any medical
condition that might affect
their ability to drive. You should
discuss driving with your
doctor, who may refer you for
further specialist assessment.
Car Insurance policies will not
provide cover for an unfit driver.
Insurance companies require
that any condition likely to
affect a drivers ability be
disclosed to them. If conditions
are not disclosed, the company
has the right to turn down
a claim. More information
is available through your
local licensing authority or
Alzheimers Australia branch.
23
Help with
managing
finances
Arranging for regular bills to
be paid by direct debit may be
easier than paying them at the
post office or you could arrange
for bills to be sent to a relative
or carer.
However, if the person living
with dementia is not comfortable
with this then it is a good idea
to contact the utilities suppliers
to explain the situation so that
services are not suddenly cut
off. When supporting a person
living with dementia, in nearly
all instances an enduring power
of attorney will need to be
appointed. However, for many
people this decision is left until
it is too late and then cannot
happen because the person
living with dementia is no longer
fit to make that decision.
The impaired judgement caused
by dementia can pose a risk
to financial security, especially
if the person has the use of
24
cheque books and credit cards.

A solution may be found in a
joint account that requires two
signatures for bank withdrawals
and cheques. If possible,
encourage the person to
organise their affairs before the
dementia progresses to a stage
where they cannot be involved
in decisions.
Even gathering their important
papers together in one place
will help. This could include
bank and building society
statements, bills, wills, pension
details and insurance policies. If
they consider this to be private
or if they are suspicious of your
motives, you can reassure them
it is just in case, and you dont
need to see the details.
Enduring power of attorney
As dementia progresses, a
persons ability to make legal
and financial decisions will
decrease. People in the early

stages of dementia may be
able to appoint an enduring
power of attorney. This is a
legal arrangement for another
person or persons to look
after your financial affairs if
you become unable to do
so. Eventually the cognitive
impairments associated with
dementia mean that a person is
unable to understand important
financial matters. At this point
a person is legally considered
to be mentally incapable of
making decisions or appointing
an enduring power of attorney.
If this is the case, a legal body
will generally appoint a family
member, carer, or organisation
to assume responsibilities on a
persons behalf.
Conditions of an enduring power
of attorney vary from state to
state, so always seek advice
before granting or accepting an
enduring power
of attorney.
Benefits
You should check the person
living with dementia, and
you as a carer, are receiving
all benefits to which you are
entitled. Always check whether

a benefit affects any other
benefits you are receiving. It
could entitle you to more, but
it could also reduce a benefit
you are already receiving.
Different support avenues are
available through Centrelink.
Centrelink is a government
agency that provides support
and financial assistance for
carers of people with disabilities,
such as dementia. This includes
a Financial Information Service
that can help with financial
planning and management.
They also provide income
support through the Carer
Allowance and Carer Payment
systems. For eligible people,
assistance with day to day
expenses through the Rent
Assistance and Telephone
Allowance programs may be
available. See the Useful
Contacts at the back of this
book for Centrelinks contact
details.
The medical and care expenses
associated with dementia
can place additional burden
on carers and families. Many
medications for dementia are
listed on the Pharmaceutical
25
Benefits Scheme which provides

reliable, timely and affordable
access to a wide range of
medicines. Centrelink also
provides a Pharmaceutical
Allowance for eligible people.
Many community services, such
as those related to in-home care
and respite are funded by state or
federal governments. If there is
a fee associated with the service
it is generally quite small. The
Department of Veterans Affairs
provide support and services
for Australias veterans, their war
widows and dependents. This
includes compensation and
health care services.
26
The Companion Card is a scheme

that allows people living with
dementia and their carers to
participate in community
activities or events without
discrimination. Companion Cards
can be presented at participating
organisations where cardholders
will not be required to pay an
admission fee for their carer.
You may also be eligible for a
Pensioner Concession Card or
Seniors Card which provides
an individual with discounted
access to some services such as
public transport. See the Useful
Contacts at the back of this
book for further details.
Communication
Communication is vital for
all of us. In the early stages
of dementia the person may
struggle to find the right
words or mix up the order of
words while speaking. As their
dementia progresses they may
lose track of what they were
saying mid-sentence or forget
your name and the names of
others close to them. This can
be distressing for carers, family
and friends.
The memory loss caused by

dementia can cause frustration
for carers, for example, when
carers must answer the same
question again and again. The
vital thing to remember is
that the person is not trying
to be annoying. They have
genuinely forgotten they asked
the question and you have
answered it. Although it can be
tiring try to remember that each
time you answer the question
27
you are reassuring the person

at that moment in time. If you
do lose patience and snap at
them, they will not understand
the reason and may be angry or
frightened by your reaction.
Here are some ideas that
may help:
Take time to answer questions
slowly and clearly with eye
contact. Stop doing other
things while you speak to them
Reduce noise and distractions
such as the television and radio
Dementia makes it harder
to process information so
give the person time and
the opportunity to ask for
confirmation
Answer the question and then
encourage them to start an
activity that you know they
enjoy, engaging them with
something else
If they are asking for
something, or to do
something, try to get it or do
it there and then. Can other
things wait?
28
Sometimes the requests of

the person may interfere with
your planning and routine.
Think about whether it really
matters in which order the
events of the day are done
or if it makes the day less
stressful for you both?
Gently question a bit further
to see if there is a reason for
the question. For example, if
the person is asking whether
another relative is coming
to visit today, it might be
because they think they need
to prepare a meal for them
or remember to give them
something.
You can reassure them theres
no need for a meal, or that
you could pass the item on.
If they are asking whether
its time to go shopping they
might be telling you they are
bored. The idea is to think is
there a message behind their
spoken words?
If what the person living with
dementia is saying starts to
become incoherent, repeat
the first few words and they
may be able to pick up the
thread again. Alternatively,
if you phrase the words as

a question you might get
a reply.
Treating the person with respect
and patience may require you
to give reasoned explanations,
but they will not always be able
to understand or remember
the explanation later. In general,
try to provide answers that are
reassuring and calming.
Although it can be hard
to control your frustration,
confrontation and arguments
will simply make your day
more stressful. It may frighten
and upset the person you care
for. If you find yourself in an
argument, try to calm down
or walk away and relieve your
frustration in a different manner.
However we all have bad days
so if you do respond in a way
you are unhappy with, it is
important to forgive yourself.
Body language, tone of voice
and facial expressions can
tell us a lot about how
people are feeling.
Body language
As dementia progresses,
the person may become
increasingly confused. There
may come a time when the
person has significant difficulty
communicating through words.
However, spoken language is
only one form of communication
and other forms such as body
language, tone of voice and
facial expression can tell us a lot
about how people are feeling.
The following points may be
useful in maintaining effective
communication as the
dementia progresses:
Speak clearly using simple
and short sentences. Offering
too many choices or asking
for complicated decisions
is likely to be confusing. For
example, ask would you like
an omelette or a sandwich?
rather than what would you
like for lunch?
If the individual finds speaking
difficult then try to tune into
their facial expressions and
body language, as these can
give you signals about how
29
the person is feeling. Angry

gestures or unwillingness to
do something may be their
way of communicating.
Likewise, smiling or being
calm shows how they are
feeling
Physical contact like holding
their hand can be reassuring
where appropriate
As the individuals world
becomes increasingly
confused, their reality may
sometimes be different to
yours. If they say something
which is obviously untrue
such as I have to go and
collect the children from
school, try not to respond
with No you dont. Instead,
try something that doesnt
directly contradict them, like
you used to walk to pick
up the children from school,
didnt you?. Attempt to enter
their world and imagine what
they are thinking
Explaining the errors in what
they are thinking or saying is
unlikely to help and you may
find it frustrating if they dont
understand
30
Humour can be a great

release and help you to feel
closer. Try to laugh about
misunderstandings rather
than becoming frustrated or
angry. Always laugh with the
person living with dementia,
never at them as this can be
degrading.
Your relationship
Changes in relationships are
common when a partner
develops dementia. You may
find it difficult to cope with the
way the person responds to you.
For example, they may not
remember all the things you do
for them or that you visited that
morning. They may accuse you
of not caring or of never visiting,
which can be extremely hurtful.
Try not to take it personally.
Attempt to understand the
situation from their point
of view. Imagine living in a
world of not knowing, feeling
confused and frightened, and
not remembering that people
are supporting and caring for
you. You too might feel alone
and upset
It may be helpful to have a

board or book for people to
write down visits and outings
that have happened and when
the next one is occurring
Labelled photos of family
members and regular visitors
may be helpful. As the
dementia progresses, photos
of people at a younger age
may be easier for the person
to recognise
If you know there are topics that

the person finds easier to talk
about or remember, suggest
these to visitors. Remember
that many friends and family
members will want to visit and
chat but may not know how to
do it.
Try to provide answers that
are reassuring and calming
at that moment.
Other people
Encourage other people to
include and visit the person
living with dementia. Social
interaction and support is
important to people living with
or without dementia. You might
need to explain that the person
requires time to comprehend a
conversation and that questions
should not rely on memory or
logical reasoning. People may
ask you what the person wants,
you can set the example by
referring the question to the
and giving them time to answer.
We understand how important
it can be to you as a carer that
other people respect the person
living with dementia.
31
Eating and
drinking
In the early stages of dementia
a person may be able to cope
with eating and meal
preparation, perhaps with some
help with the shopping, a few
prompts around the kitchen
or a meal delivery service.
As dementia progresses, a
person may forget to eat or
not remember how to cook
properly. Therefore, it may be
necessary for someone to be
present for at least one meal a
day to ensure the person has a
healthy and adequate diet.
Over time, the person may not
be able to remember if they
have just eaten, or what they
like and dont like. They may not
recognise foods and request
strange combinations. Once
again, try to remember they are
not being difficult or contrary.
It can be hurtful when they
refuse a meal that you have
prepared for them, or they are
argumentative when you are
simply encouraging them to eat.
32
Although older people have a

reduced appetite, weight loss
is not inevitable, particularly in
the early stages of dementia.
A lack of food and drink can
actually worsen the symptoms
of dementia and affect the
persons general health. If they
are losing weight, you may need
to think about altering the
arrangements that are in place.
While a balanced diet is to be
encouraged, the key thing is to eat
and drink plenty and regularly.
Here are some tips for helping
to consume an adequate diet:
Leave snacks such as biscuits
or fruit around the house
perhaps next to the persons
favourite chair, on the kitchen
table or by the bed
Put pictures on the cupboard
doors or even remove the
doors completely to help the
person find the food they
want. Visual clues can act as a

prompt to eat
A bar style fridge with a
glass door may be helpful in
prompting the person about
their options
If the person has a favourite
food, its better for them to
eat it frequently than under-eat
People living with dementia
may not remember to check
the use-by dates of food, or
even realise decayed food
is unsuitable to eat. Regular

checks on their food stocks
may be necessary
Eating together
You may visit the person living
with dementia at mealtimes,
or they may eat meals in your
home. Here are some ideas to
make mealtimes easier and
more enjoyable:
Provide cues prior to
mealtimes to help the person
recognise its time to eat and
33
help stimulate their appetite.

For example, talk about the
approaching mealtime and
involve them in setting the
table and in the preparation
of food
Allow plenty of time for eating
If the person doesnt eat a
meal youve prepared, try not
to get angry. Try asking what
they didnt like, as there may
be a simple reason
Joining the person for a meal
may enable them to copy
your actions. Seeing you pick
up the knife and fork may
help them remember to use
those utensils
Buy a wipe-clean tablecloth
so you dont have to worry if
there is a mess
Serve small portions and keep
the remainder warm. You
can then ask Would you like
some more?. This is better
than serving large portions
which will become cold and
unappealing
Try to use plain plates and
bowls, and serve foods which
34
contrast with the plate. The

person may not want to eat
something if they cant see
clearly and understand what
it is
As the person gets more
confused, try using pictures to
identify what they would like.
Use recipe books, packaging
or even take photos of
favourite family meals.
Changing tastes
Taste may change as dementia
progresses. The person may
suddenly start to have sugar in
their tea or go off their favourite
food. A rational discussion about
the fact they have always liked a
particular dish is not likely to be
successful. Try to be in the present
by asking what they really fancy
for dinner or as a treat. They
could surprise you, or it may be a
dish from their past. It may seem
like extra work but can be worth
it for a stress-free mealtime.
Visitors
Social contact is important for
all people living with or without
dementia. We all have routines
when entertaining visitors and
would feel uncomfortable if we

couldnt do them. If the person
is living in their own home, it
may be important for them to
offer you a cup of coffee when
you visit, or to invite you to stay
for lunch. Dont feel as if you
need to do everything they ask,
just keep an eye out that they
are safe or offer to help. If you
have time, cooking together can
be a relaxing and familiar way of
spending time together.
Eating out
You may worry about taking
the person out to a caf or
restaurant, but people in the
early stages of dementia are
often able to cope with eating
out and will enjoy it as a treat.
Some people may find it
confusing and disruptive so it
is important to think about this
before embarking on an outing.
Drinking enough
Some people will limit the amount
they drink if they are worried
about getting to the toilet in
time (there are practical tips on
this in the section Using the
toilet and continence problems).
Drinking enough is vital to

health and dehydration can
worsen the symptoms of
dementia, so encourage the
person to drink plenty of fluids.
You could make a covered jug
of water or fruit juice easily
available by placing it next to
their favourite chair or out on
the kitchen counter. You could
suggest having a cup of coffee
or tea more often than you
otherwise would. It is a good
idea to remind people to drink
plenty while you are present so
you can help them go to the
toilet. If incontinence at night
is an issue, try to reduce their
intake of liquids in the evening.
Physical problems with eating
Physical changes as a result of
dementia can include a reduced
sense of taste and smell, loss of
coordination and difficulties in
feeding.
Other physical problems
may include:
Mouth problems the person
may have bad or few teeth,
poorly fitting false teeth,
mouth sores or ulcers. If you
suspect this might be a
35
problem try to get the person

to see a dentist as soon as
possible
eating as a family it may be

tactful to ensure everyone is
eating some finger food.
Problems with swallowing

some people living with
dementia have a delayed
or diminished swallowing
reflex. It may be necessary to
consult a speech therapist for
specialist advice
Specialist crockery and utensils,

such as adapted cutlery which is
easier to hold or plates with raised
edges may also be helpful.
These types of technology
are available from your local
Independent Living Centre.
Not recognising food the

person may not recognise food
or may try to eat non-food
items. Consuming the food
first to demonstrate that it
is safe might encourage the
person to eat appropriately.
In the later stages of dementia,

you may need to feed the
person you care for.
Helping with eating

For the person living with
dementia, losing the ability
to feed themselves may lead
to strong feelings of loss and
frustration. Therefore, try to
make sure the help they are
given at mealtimes is sensitive
and appropriate.
Finger foods that dont need
cutlery may enable the person
to continue to feed themselves,
reduce frustration, maintain their
independence and importantly
reduce work for you. If you are
36
Maintain eye contact and be

at eye level when helping the
person to eat as it helps keep
them engaged
Make sure you have plenty of
time so the meal doesnt have
to be rushed
Attract the persons attention
before placing the food in
their mouth
Serve small portions so the
food doesnt get cold
If you feel comfortable,
arrange for someone to feed
you so you can see how it
feels and how to do it well.
Dont feel you need to do

everything for them just
keep an eye out that they are
safe, or offer to help.
37
Activities
Activities can really help to improve the quality of
life for the person living with dementia. They also
provide stimulation and allow people to express
themselves.
In the early stages of dementia, encourage the
person to continue any outside activities that they
already enjoy and are still able to do. They may just
need a bit of encouragement or prompting, such as
reminders of when they are due to play bowls, go
to church or go fishing. Leaving equipment for an
activity in an obvious place, or giving them a ring
before they are due to go, may help to prompt their
memory. If someone is having trouble when starting
an activity, try demonstrating what is involved.
By helping a person to keep up the activities they
enjoy, you can help maintain a sense of self-identity
and purpose.
While respecting the persons privacy and dignity it
might be sensible to tell a friend or the organiser of
their condition, so they can provide any extra support
or help that is needed.
Find some activities that enable you to spend calm,
peaceful time together.
38
39
Calm time
You might want to find some
activities that the person finds
calming, or that will allow you to
spend a relaxing time together.
For example, you could sit
together knitting, watching TV,
painting, watching cricket or
listening to music. These calm
times can help take the pressure
off you for an hour or two.
Activities that are fun and
enjoyable help to improve the
mood of everyone involved.
Think about dancing or singing,
a game of darts or a trip to the
beauty salon. Whatever you
do, remember that its about
enjoying the activity, not the
quality of the end result. If you
end up laughing together, you
have enjoyed the activity.
Dont forget that for many
people household chores can
be satisfying activities which
provide the comfort of routine
and a feeling of contribution.
While activities like dusting,
hanging out the washing or
washing the car may require a bit
of prompting and a watchful eye,
they provide engaging activity.
40
If the person finds it easier to

talk about the past or there are
items they enjoy reminiscing
about, you could keep them
together in a box for the person
to look through or to get
out when the conversation is
flagging. Younger relatives or
old friends really enjoy doing
this with the person. Items in the
box might include old photos or
objects from the persons past,
such as trophies or antiques.
activities can be meaningful

moments, like talking about
a view, reminiscing about a
photograph or laughing while
dunking a biscuit in a cup of tea.
However, it is important to
recognise that the exact
symptoms and capabilities of
the person will depend on the
type of dementia they have
been diagnosed with and the
length of time they have had
the condition. Their functioning
may also change from day to
day or as the day progresses.
In particular, the capabilities
of a person living with Lewy
body disease can change hour
to hour. People living with
dementia often have a short
concentration span and can
easily become frustrated by an
inappropriate or ambitious task.
Give instructions and

guidance as short, clear
sentences. Pointing and
demonstration can be more
useful if spoken words are
not easily understood. But
remember, the aim is to guide,
not to do it for them
When dementia becomes

severe and remembering and
concentration are fleeting,
Keep tasks short to allow

for the persons reduced
concentration span
Use your sense of humour to

enjoy spending quality time
together.
Key points to remember:

Give plenty of encouragement
to increase their confidence
Be patient dont step in and
take over
Avoid giving too many

choices or challenges as
people living with dementia
can find it hard to process
multiple options
Break tasks down into steps
or provide staged tasks such
as sweeping or folding towels
Television and radio

Many people enjoy watching
television or listening to their
favourite radio station. However,
as they become more confused
and their short term memory
deteriorates, they may find
it confusing and distracting.
Too much music or too many
voices may sound like blaring,
confusing noise to a person
41
Try turning the television

and radio off, particularly
when the person is doing
other things. See whether
this makes them calmer or
increases their ability to focus
on other tasks
Try different stations. For
example, find old movies or
history programs on television

or tune into a golden oldies
radio station. Ask them
whether they like it and
observe whether they seem to
be enjoying it
Try a DVD, video or CDs of
programs or music from their
younger days.
Dressing and
personal care
What we wear helps to express
who we are and how we feel.
Maintaining a persons choice
and involvement in their clothes
for as long as possible can help
to promote a sense of identity
and dignity.
Here are some tips on helping
the person living with dementia
to dress themselves:
Making it fun
Try to leave enough time for
dressing so neither of you feel
rushed or stressed
42
If they get it wrong, keep it in

perspective does it matter if
their buttons are not fastened
correctly or the top doesnt
go with the shirt?
Lay the clothes out in the
order they should be put
on, i.e. start with underwear
and finish with a cardigan or
jumper. Alternatively, hand
each item to the person in the
correct order
If the person is largely able to

dress unaided, use the slow
process as time for you to
relax with guiding or helping
as required
They may need instructions

about how to dress. Keep
these simple and short, such
as Now put your socks on
your feet. Demonstrating
what to do may also be
useful. You could do this by
getting dressed together if
appropriate.
Offer simple choices such

as Would you like the red
jumper or the blue jumper?,
rather than offering too many
options like What would you
like to wear today?
The individual may have

particular things they always
like to wear, like matching
jewellery or a handkerchief in
their pocket. Try to maintain
these little touches.
43
If you need to directly help

a person to dress, reassure
them by explaining what step
you are taking in dressing
them, such as I am now going
to put your jumper over your
head.
Make it easier
Altering fastenings from
buttons and zips to Velcro or
elastic will make self dressing
easier. You may need to
demonstrate how these new
fastenings work
It may be useful to label
the drawers or cupboards
where different clothing is
kept. Pictures can be better
understood than words.
Storing whole outfits together
could also help.
Hair dressing and grooming
Appearance is important to
most of us and it affects the
way we are perceived by other
people. Being well groomed
may be important to the
person living with dementia,
and rightly or wrongly it may
help other people to treat them
with the respect they deserve.
44
It may seem superficial but if

the person you care for is well
dressed and well groomed you
may also find the situation less
frustrating and it may help you
feel you are coping.
A trip to the hairdressers or
barbers can be a familiar and
enjoyable experience. Such
trips may be something that the
person used to do routinely, and
they will recognise the place
and the people. Particularly for
women, a trip to the beauty
salon may be a real treat.
with a pair of scissorscan be

concerning for someone living
with dementia.
Involve the person living with
dementia in decisions by
offering them simple options,
such as a choice of two nail
colours
If the person is enjoying the
activity, make the experience
as pleasurable as possible,
perhaps with a scalp or hand
massage
Dont neglect toe nails. Long

or painful toe nails can make
walking difficult and reduce
mobility.
Take the opportunity to relax
while the person is being
looked after by someone else.
If they get it wrong, try to
deal with it using humour
and keep it in perspective.
For other people, especially

those whose dementia is more
progressed, it may be better to
get the hairdresser or manicurist
to come to the house.
Here are some tips that will
make the process easier and
you can share with the visiting
person:
Explain to the person living
with dementia what you are
going to do at each stage
while getting their attention
and making eye contact. You
could imagine that having
your head doused in water or
someone coming towards you
45
Washing
and bathing
Personal hygiene routines are a
common source of anxiety for
and their carers, so this needs
to be handled sensitively. The
person will have been carrying
out their own personal hygiene
activities for a long time.
Requiring help or becoming
dependent on others can be
embarrassing and awkward
for both the person and for
you as the carer. This is a key
area in which it is important to
prolong the independence of a
person living with dementia for
as long as possible and offer
unobtrusive help.
It is important to talk to the
person to find out their
preferences and feelings. Try to
establish exactly what the person
can still do for themselves, for
example, miming the action of
brushing your teeth may be
enough of a prompt to maintain
independent brushing.
Most people now shower or
bathe at least daily, however
46
this was not the case 40-50

years ago. The norm was to
have a bath about twice a week
and showers were much less
common. So be aware that
routines you are used to may
not suit the person living with
dementia. Personal hygiene can
be maintained without a shower
or bath every day.
Here are some practical tips
which you may find useful:
We all have long established
personal care routines,
especially in the mornings and
before bed. Encourage the
person to continue with their
own routines for as long as
possible
The person may require some
prompting, such as handing
them the hairbrush to brush
their own hair
Encourage involvement and
choice by asking questions
such as, Which bubble bath
would you like in your bath?
or is the temperature of the

water ok?. Simply asking do
you want a bath? could
prompt a response of no and
it may be difficult to encourage
the person to have one
Thorough drying is important
in order to prevent sores or
chafing. This can be made
easier by allowing the person
to sit for a while in a clean
towel or absorbent bathrobe
If the person spends long
periods sitting or in bed, try
to check for red areas or sores
on their skin whilst the person
is undressed. These can be
the first signs of pressure
sores (bed sores). If you have
concerns talk to your GP
If the cold temperature of
the bathroom is a barrier to
washing, consider installing a
heater. This will also assist with
drying after a shower or bath.
If a person is resistant to a bath
or shower, try encouraging
them to wash one part of their
body every day. For example, on
Monday they could wash their
legs and feet, and on Tuesday
wash their hair. For people with
continence issues, it might help
to encourage them to wash their

genitals on multiple days during
the week.
Privacy
Most of us consider the
bathroom to be a private place.
The person may be unwilling
to undress in front of you, be
undressed by you, or bathe in
front of you. You may also find
these things uncomfortable.
Allowing the person some
privacy may make bathing
easier for you both.
You could leave the room while
they undress and get into a
dressing gown, then walk with
them to the bathroom
Run the bath for them and let
them step into it wrapped in
a towel
Have a thermostatic valve
fitted to the hot water
system so they cannot scald
themselves if they run the
bath themselves
You wont necessarily need to
help them wash, at least not
every time. So long as they
are bathing regularly they will
be clean.
47
Using the toilet

and continence
problems
Having a contrasting toilet

seat can assist the person in
locating the toilet
Installing handrails will make
it easier for a person to go
to the toilet and may reduce
their fear of falling
Continence issues can be very

distressing for both the person
living with dementia and the
carer. An individual might feel
they are losing control of their
dignity and their life.
to forgetfulness (not being able

to locate the toilet), mobility
problems, depression, difficulty
arranging clothing or mistaking
other items, such as bins for
toilets.
Many people find it very hard to

accept they need help with such
an intimate area.
Helping to make toileting easier
They may try to hide their

continence problems. By
treating the issue in a matter
of fact way, or using humour,
you can help to prevent the
issue from becoming a bigger
problem than necessary.
Problems with using the toilet
and continence issues
Incontinence, or bladder control,
is a specific physical problem
and only one of the reasons why
a person may have problems
with their toileting. Continence
problems may also develop due
48
Here are some practical tips

that can make using the toilet
easier and help with the
management of continence
issues:
Remind the person where
the toilet is. A picture of a
toilet on the door may help
or arrows and signs to direct
them to it
People may be more
confused at night and not
able to find the toilet. It can
help to leave the door ajar
and lights on in the hallway
and bathroom to direct the
person to the toilet
Make sure their clothes are

easy to undo, try using Velcro
fastening instead of fiddly
buttons or zips
Make sure the bathroom is
well lit and warm as a person
living with dementia may not
tolerate discomfort well
coffee, are diuretics and will

increase trips to the toilet.
If this is an issue, try to
reduce the number of cups
of tea and coffee a person
consumes. Alternatively, you
could introduce caffeine free
tea and coffee
Giving a warm drink at
breakfast and visiting the
toilet about 20 minutes
later may help to promote
toileting and routine
Watch for signs of needing
to go, such as fidgeting or
pulling at their clothes
If the toilet is difficult to get

to, such as being upstairs,
then a commode may be
useful
Try to establish a routine of

going to the toilet before
getting dressed or going to
bed.
Getting into the habit
Getting help and advice
Regularly remind the person

to go to the toilet if they are
not doing so.
Continence issues are often

easier to manage with the
assistance of others, for
example, your GP would be a
good option to go to for help
and advice. They will also be
able to give you details of the
local support services in your
area. Your local hospital or
community nursing service may
Establishing a routine of set

time will help to train the
bladder and bowel
Drinks that are high in

caffeine, such as tea and
49
have a Continence Adviser who

can make a home visit.
Advice and guidance on all
aspects of continence is also
available from the Continence
Foundation of Australia through
the National Conference
Helpline, details of which are in
the Useful Contacts section.
Coping with
unmet needs
Understanding that the person
living with dementia may no
longer be able to communicate
or express their feelings and
their needs is important. This
includes the need for identity
and belonging, to be included
and occupied and the need to
be comforted and comfortable.
It is also important to recognise
such needs are shared by all
people and do not change just
because you have a diagnosis of
dementia. When needs are not
being recognised or met, the
person may become distressed,
anxious, agitated, frustrated or
angry. They could also become
apathetic or withdrawn.
Additionally, because of the
progression of the disease and
the brain changes the person
living with dementia may
be unable to interpret their
environment or what people
around them are saying and
doing. This inability to cope
and remember may lead to a
reduction in self control and
50
cause the inhibitions and learnt

rules of socially acceptable
behaviour to be forgotten.
Therefore, people may react
or behave in ways that can be
distressing for them and the
people around them. This may
range from repetitive questions
to hurtful comments, unwanted
touching or advances, verbal
aggression and threats, kicking,
pinching or lashing out at
people or objects.
It is important to remember that
each person will be different
in how they react to what is
happening around them and
that agitation and aggression
is not inevitable. There are
usually triggers that prompt
these episodes that could be
avoided. Equally, by recognising
and meeting the persons needs
we can support the person
effectively to express their
feelings appropriately.
It is helpful to try and discover
what is causing a concern,
51
because it is usually triggered

by an event or aspect of the
environment.
Think about whether any of
these causes apply:
Agitation as a result of
frustration. For example, does
the agitation occur as a result
of a person wanting to do a
particular activity and being
told they cant, or finding
themselves unable to do it?
Does the person get upset or
frustrated after an argument
with you?
Does the person get agitated
or upset at certain times of
day when they may be more
fatigued or when they are less
able to cope? Is the
environment noisy,
overwhelming or triggering
long held routines, for
example, wanting to go
home when it is darker?
Annoyance at not being
able to make themselves
understood, or at you for
having difficulty in
understanding what they
are saying
52
Feeling that their privacy has

been invaded, for example,
when going to the toilet or
bathing
Was the person startled by
a sudden approach, or an
approach from behind or the
side?
Does the person have a
condition that may cause pain
or discomfort? For example,
urinary tract infections are
common in older people and
cause irritability and agitation
A person might be frightened,
because they do not
understand who you are or
because you touched them
when they werent expecting it
A person might be confused
about the aspects of a
situation, for example, they
may think youve taken
something or not know where
they are.
Try to think about what they
might be thinking or
experiencing. Ask them
questions to help you
understand, think about the
circumstances in which the
outburst occurs, or try a different

approach next time. Doing this
might help you to avoid the
situation in the future, or at least
be understanding or know how
to react when it occurs.
If a person is being
argumentative or aggressive, try
not to argue or be aggressive
and loud in return. Unless they
are endangering themselves
or you, give them plenty of
space. Perhaps even leave the
room to allow both of you to
calm down. Try not to dwell on
negative feelings about it. If you
do react to the person in a way
you would not have liked, try
to forgive yourself as we are all
human and have bad days.
Perhaps the most important
thing to remember when coping
with frustration or anger is
not to take it personally. The
person wouldnt normally or
deliberately hurt your feelings
or be aggressive. Dementia
often makes it difficult for
people to understand what is
going on around them and to
control their behaviour.
with dementia. People living

with dementia can rarely
remember what they have done
and so lose the ability to learn
from experience. They may be
equally upset by what they think
is going on, the atmosphere, or
by having lost control, so try to
provide lots of reassurance by
talking, holding hands, or
cuddling if appropriate. Try to
find a healthy outlet for your
own anger, such as going for
a walk or talking with a friend.
If you are worried about
episodes of anger or aggression
and cant work out why these
are happening, it may be useful
to call the Dementia Behaviour
Management Advisory Service.
This is a free, over the phone
service that provides advice
and strategies for reducing the
possibility of unmet needs,
24 hours a day, seven days a
week. Other options include
calling your local Alzheimers
Australia office or consulting
your local GP. Further details are
in the Useful Contacts section.
After an incident or argument,

try not to take out your
frustration on the person living
53
Getting help
Dont be afraid to ask for help, or feel that you are
failing if you cannot cope. Much of the responsibility
for care, especially in the early stages, often falls
onto one relative or friend who may well be you.
This can be extremely stressful and exhausting
and others involved may not realise just how many
demands are put on you.
Caring for a person living with dementia in the late
stages of the condition can be a 24 hour a day job.
Many carers report they feel as if their health is
declining with that of the person living with dementia.
The stress associated with caring for a person living
with dementia can lead to emotional and physical
health issues. Therefore, it is important to occasionally
take a break and stay well. This can be easier said
than done but getting some help and moral support
may enable you to cope and continue to care.
Help from family and friends
It might be helpful to maintain clear and regular
communications with family and close friends. This
could be achieved through regular phone calls or by
holding a get together with family and friends so that
issues can be discussed and shared. This can assist
in sharing the burden and prevent feelings of guilt
and resentment towards the people to whom you
are close. It may be possible to agree to a roster of
visits among family and friends living nearby. People
54
55
popping in for a cup of tea might

help relieve the pressure on you
and provide a social outlet for
the person living with dementia.
Perhaps someone could have a
game of cards with the person,
or sit and watch the cricket
on television with them, which
would give you an hour to do
other things or just have a rest.
Family members may be able
to bring old photos or objects
that would prompt memories
and reminiscences. Those family
members who live further away
might be able to offer financial
assistance, or blocks of care
time which can enable the main
carers to take a break.
It is possible that the person
you are caring for may find it
distressing to spend time with
people they dont recognise.
If this is the case, family and
friends can help in other ways,
for example, doing the shopping
or cooking a meal. If they offer
say yes!
Outside help
As dementia progresses, the
person may not have insight into
56
their care needs or be resistant

to outside help. Therefore, help
might be accepted more easily
if it is introduced in the earlier
stages of dementia.
There are many different types
of help available from various
sources. These can differ from
region to region, so a good
starting point is your local
Alzheimers Australia branch or
Commonwealth Respite and
Carelink Centre. Your GP or
medical specialist can also help.
The Useful Contacts section at
the end of this book gives you a
quick reference guide to these
options.
Care needs assessment
To access many community and
aged care services, a person
living with dementia requires an
aged care assessment. This is
carried out by a local Aged Care
Assessment Team.
These teams assess the care
needs of a person living
with dementia and provide
advice and access to a range
of different community and
residential care options.
They also assess and approve
older people for Australian

Government subsidised aged
care, such as residential aged
care and Community Aged
Care Packages. An assessment
can be arranged by contacting
the team through your local
Carelink Centre. Your local GP
can also assist in organising an
assessment. The assessment is
carried out in the individuals
home or in a medical setting,
such as a hospital. The team
will also value your input and
perspective.
In home care services
In home care services can help
with the personal care of the
individual, for example getting
the person up in the morning,
washing and dressing them and
putting them to bed at night.
House work and shopping
assistance may also be provided.
The number and frequency of
visits will depend on the needs
of the individual. Local options
for in home care might be
suggested by an Aged Care
Assessment Team or you can
find out more by contacting the
Carelink Centre.
Planned activity groups and

day centres
Planned activity groups and day
centres may be available locally.
These can be a great source
of enjoyment for the person,
as they provide social contact
through activities and/or a meal.
Additionally, they provide you
with the opportunity to have a
break! Transport to and from the
centre is often provided.
To get in contact with such
centres, including those run by
charities or non-government
organisations, contact your local
Commonwealth Carer Resource
Centre. Details for these
organisations are in the Useful
Contacts section of this book.
In home equipment and
technology
There is a wide range of
specialist equipment available,
which you may find useful in
assisting with daily living. The
need for equipment will vary
as the individuals dementia
progresses but could include:
Personal alarms
57
Prompts or memory joggers,

such as notice boards,
large or talking clocks or
thermometers
movement, gas detectors,

devices to control the
temperature of hot water and
restricted-flow taps
Mobility aids, such as

wheelchairs, walking frames,
stairs, lifts or handrails
Your local Aged Care

Assessment Team can make
suggestions for in home
equipment. These options
are also available through the
Independent Living Centres
and Commonwealth Respite
and Carelink Centres
Continence aids, such as

raised toilet seats, bed pans,
commodes and incontinence
products
Washing aids, like walk-in or
sit-in showers, bath seats and
hoists
Specialist cutlery, cups or
crockery which enable the
person to feed themselves for
as long as possible
Kitchen adaptations such as
glass-fronted refrigerators
or gas and electricity safety
switches
Medication aids, such as boxes
for tablets with sections for
each day of the week and times
of the day (Webster pack)
Safety devices, such as
pressure mats that can be
placed by the doors to detect
58
Further ideas about

technology for people
living with dementia can be
accessed through the website:
dementiatechnology.org.au
Continence aids and advice
can be accessed by calling the
National Continence Helpline
.
Your doctor or other health
professional can make an
appropriate referral, for
example, to an occupational
therapist. Please see the Useful
Contacts section of this book
for further information.
Advice and information

Centres and the Aged Care and
Community Care Information
Line have telephone advice lines,
websites and free resources
covering a wide range of subjects.
Some will be aimed at older
people in general but there is also
a wealth of information available
that is specifically aimed at
people living with dementia and
those caring for them. Many of
these organisations are listed in
the Useful Contacts section.
In our experience of caring for
the relatives of people living
with dementia, as well as those
with the disease, the more they
understand dementia, the easier
they find it to cope with their
relatives behaviour and the
progress of the disease. If you
are caring for someone at home,
these sources of advice also
provide practical information
to help you cope. Alzheimers
Australia runs courses for carers
and people living with dementia,
which we highly recommend.
These courses cover all forms
of dementia.
Many organisations, such as

Alzheimers Australia, the
59
Taking care
of yourself
It is really important that you
care for yourself, whether it is
because you are also leading
your own life, wanting to
provide the best possible care
to the person you look after or
planning for the time when you
no longer care for the person
60
well, taking breaks from caring,

getting some fresh air and
exercise and having support
from others will all make it easier
to cope with the pressures and
frustrations you may face.
You dont have to cope alone.
There are many sources of
support and help available,
which might be useful even if
you feel you are coping well at
the moment.
The simple things are important.
Getting enough rest, eating
Money
You may have had to give up
work or reduce the hours you
work to become a carer. You
may also be incurring additional
costs of care, such as equipment
or aids.
Depending on your situation

you may be entitled to benefits.
Check with your local Centrelink
office to ensure you are getting
everything you are entitled to.
Health
It is important that you have
you own medical checkups.
Regularly visiting the doctor
will help you stay on top of your
own health issues. For your own
emotional health, counselling
and support services are
61
available through your local

Centre.
Support Groups
Support groups in your area
can be a great help, as they
allow you to have a break from
caring and talk to other people
in the same situation. You can
share tips and advice, as well as
your frustrations and worries,
and you are talking to an
understanding listener.
Even if you dont normally like
groups, it may be worth a try
because people often find they
all have something in common.
You can find out about your
local groups by:
Ringing Alzheimers Australia
on the National Dementia
Helpline to find out about
their Living with Memory Loss
Program, where carers and
can enjoy social interaction and
obtain information and support
Checking with your local
council, community centre
or aged care provider.
62
Please see the Useful Contacts

section of this book for further
information.
Respite
Finally, keep in contact with
your own friends and try to
make time to do the things you
enjoy, so you maintain your
identity as an individual and
not just as a carer. Often carers
are reluctant to take a break
because it involves leaving the
by themselves or with people
who may not understand their
condition.
Respite can also be used to

provide care in an emergency
or arranged for a longer period
of time in a residential care
home. To access residential
respite, the person living with
dementia must be assessed
by the Aged Care Assessment
Team to determine the level of
care provided. Advice about
local respite options is available
through the Commonwealth
Respite and Carelink Centres.
Respite services are a great

resource for taking a break and
ensuring the person living with
dementia is being cared for. It
also provides an opportunity
for people living with dementia
to enjoy themselves with new
or familiar experiences. Respite
is available in the home, which
involves a care worker providing
support for a person living
with dementia while enabling
carers to do things outside the
house. The care worker may also
accompany the person living
with dementia to an activity
they enjoy.
63
Thinking about
residential care
Carers often feel that moving the
person into an aged care home
is a betrayal. You may feel that
you have let the person down or
you should have coped for
longer. You may have previously
promised the person that you
would always look after them
at home and now feel forced to
break that promise.
When considering issues like
those mentioned above, it may
help to talk them through with
someone who understands,
and who can help you come
to terms with your decision. It
is often the case that promises
were probably made in a
completely different situation,
when you had no idea of all the
strains and stresses that lay ahead.
Caring for the person living with
dementia at home may now not
be the best thing for them, as
their needs have changed. It may
help to talk to family, other carers
at a support group or your local
Alzheimers Australia branch.
Everyones situation is different.
64
best solution when somebody

has to move on from their own
home. This might happen for a
number of reasons. For instance:
A different way of caring

The move to residential care
doesnt mean giving up on your
caring role completely, unless
this is what you want. Aged care
homes simply represent another
way of caring. Your involvement
is still very important. Some
carers feel that residential care
help them have a better
relationship with the person, as
their time together can be more
special, less stressful and more
like it used to be, without the
constant worries of practical care.
When to consider an aged care
home
The effects of dementia worsen
over time and most people
living with dementia will need to
go to special accommodation
before they reach the last
stages of dementia. A best
practice guideline is to move
people living with dementia as
infrequently as possible. An
aged care home is usually the
The person living with

dementia is becoming unsafe
on their own, for example,
leaving the stove on or
wandering onto the street
Carers are having to provide
increased physical support,
like lifting the person in
and out of bed
Caring for the person is
becoming too much for the
primary carer because of
their own health issues
which they will be safer and more

comfortable in specialist care.
They may be resistant to the idea
they are often also unaware of
the impact their care needs are
having on others. They may also
be finding life at home
increasingly difficult, confusing
and frightening. Living in a
residential care home not only
ensures that people living with
dementia receive personal care
and health care within a safe
setting, it also provides them
with opportunities for activities
and socialising. Perhaps more
importantly, such a living
situation can offer peace of
mind to all concerned.
Levels of confusion or
frustration are causing the
person to become aggressive
or upset. The person may be
acting in an increasingly
inappropriate and
unpredictable way and this
poses a barrier to providing care.
How to find the right care home
It is common to feel
uncomfortable about the idea
of residential care and you may
feel guilty for even considering
it, but most people living with
dementia will reach a point after
Residential care homes are

generally broken down into
those that provide low level
care and high level care. Low
care homes are sometimes
called hostels and provide care
To access an aged care home,

a person living with dementia
must be assessed by an Aged
Care Assessment Team, who
will then suggest an appropriate
level of care.
65
for people who are mobile and

need some care assistance.
The National Dementia

Helpline on 1800 100 500
They may require assistance

with personal care, laundry,
cooking, or supervision when
taking medication. High level
care is also known as nursing
home care and provides 24-hour
nursing care for its residents.
These care homes are more
suitable for a person in the later
stages of dementia or those
with other medical conditions.
The DPS Guide to

Aged Care online at:
agedcareguide.com.au
Different fees and charges are

associated with residential care
and it is important to consider
these when reviewing care homes.
Information can be obtained
directly from the homes and
options for financial advice
include Centrelink or a private,
qualified financial advisor. The
Department of Health and Ageing
is another good resource.
In addition to the Aged Care
Assessment Team, you can find
out about aged care homes in
your area by contacting:
The Aged and Community
Information Line on
1800 500 853
66
Local friends, family or other

carers for recommendations.
Reviewing and deciding on
a care home
Try to visit a few potential care
homes, so you can see the
differences between them and
be sure the home you ultimately
decide on will be right for the
person you care about.
Some care homes may have
dementia specific services. It is
also worth asking if the facility
has ageing in place. This refers
to some homes that have both
low and high care places, which
can make the progression of
care smoother on a person
living with dementia through
minimal environmental change.
The skills and attitude of the
staff are also very important.
Ask about specialist dementia
care training and examine how
the staff and manager interact
67
with residents and the person

you care for (if they have
accompanied you). Often the
best time to do this is during
meals and activities.
A dementia friendly care home
will treat the person as an
individual with their own
preferences and abilities, rather
than as someone who has to fit
into the rules and routines of the
home. Ask staff about how they
cater for the individual needs of
people living with dementia.
For example, do they talk about:
The persons life history
Their spiritual needs
Their cultural and language
needs
How their food preferences
will be catered for
How theyll provide the kind
of activities the person likes
How theyll ensure the person
has somewhere quiet and
calm to relax
How their room can be
personalised
68
Whether they are allowed to

stay in their own room if they
wish
Visiting someone
in an aged care home
How you could be involved in

their care if you want to be.
A residential care home can
never be quite like your home
but it should provide a safe,
reassuring and familiar place for
and for those who visit.
Your needs
Think about your own needs as
well. For example, if you want
to visit frequently and the best
care home is difficult to get to,
the second best facility that
is nearer might be the right
choice. Can you visit at times
that are convenient for you, or
are there only set visiting times?
Is there a relatives or a carer
support group you can join?
What processes are in place for
you to raise concerns about the
care of your loved one with the
care home? These are important
things to consider.
Visiting someone in care,

particularly a specialist
dementia care unit, can be
distressing to begin with.
However, once you have spent
more time there and developed
relationships with staff and
other residents, you might feel
more at ease.
Getting to know the person
Working with care staff can
help your loved one feel more at
home and gain more enjoyment
out of their time in the care
home. Try to talk to the staff
as much as you can about the
person so they understand
their needs and are aware of
particular likes, dislikes, habits
and circumstances around
unmet needs.
When the individual enters
the aged care home, the staff
will seek to find out all about
them. It is very useful if you,
or another person who knows
them well, can be there at the
admission meeting to provide

the information. However, be
careful to let the person living
with dementia express their
own views and feelings, even
if they are not what you were
expecting. Try not to contradict
the persons statements. If
necessary, share your personal
understanding with the staff
after the meeting or via a letter.
A care plan will be written for
the person, which will include
all the information about
their needs, preferences and
abilities. The care plan should be
regularly reviewed by both
staff and family as the persons
needs change over time.
Telling their life story
Although you may have known
for a long time, the care staff
have just been introduced to
them. Providing their life story
to staff can be helpful, because
you equip the staff with topics
69
to talk about, ideas to base

activities on and ways to interact
and stimulate the person. Some
individuals may become very
withdrawn when they enter a care
home. Being able to participate
in things they enjoy, like listening
to their favourite piece of music,
or eating their favourite meal
can be very reassuring.
You could help the staff and
person you care for to fill a
memory box or create a life
board with meaningful items
such as photographs, books,
items from their family or
favourite hobbies. Some care
homes may draw a life map of
information, displaying when
and where the person was born
and grew up, where they got
married, what jobs they had and
favourite foods.
Understanding the persons past
will help care staff understand
some of the ways the person
may act or react as their short
term memory deteriorates and
they increasingly rely on their
long term memory.
Factual information can be
very helpful. For example, by
knowing that someone was a
70
baker, staff can understand why

they may want to get up very
early in the morning. Difficult
subjects may need to be
included also, like the loss of a
child. You may need to help with
the exercise if the person has
difficult communicating.
In summary, by telling the
persons life story the care staff
will be able to:
Understand and separate the
person from the dementia
Offer more person-centred
and individual care options
Give prompts for conversation
topics which are more likely to
engage the individual
Identify activities and outings
which may be of particular
interest to the individual
Avoid topics or activities that
may upset the person or
trigger negative emotions and
memories
Introduce the individual to
other residents who may
have similar interests or
backgrounds
71
Joining in
Discuss with the staff whether
you are welcome to join the
person living with dementia for
meals and activities. This may
increase your enjoyment and
the quality of your visits.
Dont worry if you feel a bit self
conscious to start with!
All care homes should have
a wide range of activities for
residents. Perhaps you could
time your visit to fit in with a
specific activity you can join, like
singing or art, particularly if the
conversation is difficult. It could
turn out to be a lot of fun for
you both and give you some
quality time together. You may
be able to join them for a meal
or help them eat, if that is what
they need.
Some activities may not need a
lot of preparation but will still be
meaningful and enjoyable for
the person, such as watering some
plants, going for a walk or
reading.
organising activities or are part

of a committee. They often
report that this enables them to
remain involved in their loved
ones life, while also enjoying
social contact and feeling useful.
Working with the care team
Although you probably know
extremely well, the care staff
will be experienced in caring for
people living with dementia and
may have ideas or suggestions
that are new to you. It might
be useful to discuss these with
the staff and be willing to let
them try new things. They may
also speak to you if they see
the person acting in ways that
puzzle them, to see whether you
can help them to understand it.
For example, care staff might
be concerned about a resident
who always slumps to one side
in their chair, with their arm over
the side. Relatives can alleviate
this concern by explaining that
the person always sat like that
while stroking their dog at the
side of the chair.
Many relatives of people in

aged care homes are volunteers
at the home and assist in
72
73
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Chosing a
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What to look for when choosing
a care home
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74
This checklist is to help potential residents and

their families when theyre looking for a care
home. It will help you compare different homes
and gives suggestions on what to look for and
ask about. We want to help you think about the
particular things that are most important to you
when choosing a home. You can use the boxes
to give yes/no answers or to score each
home in the different areas.
75
Location, first impressions

and care
Location
Home 1
Home 2
Home 3
Notes
Will it be easy for friends and family to get to the home?

Is the home convenient for shops, public transport, etc?
Do the surroundings suit you?
Is there somewhere you can sit outside?
First impressions
Did you receive a warm and friendly welcome?
Were refreshments offered during your visit?
Is the atmosphere homely and welcoming?
Is the home clean and pleasantly furnished?
Does the home smell pleasant?
Do the residents seem happy and well cared for?
Care
Can the home offer care suitable for your needs?
How often will your care needs be reviewed?
Will the home be able to provide any future care needs?
Will you/your relatives be involved in making decisions about the care?
Does the home offer or arrange complementary therapies?
Which doctor can a resident see?
Are there visiting dentists and opticians?
How often does the hairdresser visit the home?
Can the home provide other services such as chiropody, physiotherapy
and occupational therapy if required?
Does the home have suitable assisted bathing facilities?
Can residents get up and go to bed when they want to?
Will relatives be advised as soon as a resident is taken ill?
76
77
Communal
areas
Communal areas
Home 1
Home 2
Home 3
Notes
Is there more than one room where residents can sit or see visitors?
Is there a quiet lounge without a television?
Are there safe gardens?
Is there a bar?
Are there arrangements for people who wish to smoke?
Is there easy access for wheelchair and walking frames?
Are there toilets within easy reach of all parts of the home?
Are there handrails in the toilets and corridors?
78
79
Bedrooms, meals
and activities
Bedrooms
Home 1
Home 2
Home 3
Notes
Did you see the room that is available?

Can residents bring their own possessions and furniture?
Was it bright and well decorated?
Are ensuite facilities available?
Do bedrooms have a television?
Do bedrooms have a telephone point?
Can residents use a telephone in privacy?
Can residents lock their room?
Is there a lockable drawer or cabinet in the room?
Does each room have a call system?
Can residents keep pets in their room and can they go in other parts of the home?
Can you change rooms if you want to?
80
81
Meals
Home 1
Home 2
Home 3
Notes
Can residents eat when they want to?

Can meals be taken in a residents bedroom?
Is there a choice of menu for each meal?
Can special diets be catered for?
Can residents make themselves a drink?
Are snacks available at all times?
Are copies of current menus available for you to look at?
Are the menus rotated?
Does the chef consult the residents on their preferences?
Can residents choose who they sit with in the dining room?
Can relatives and friends have a meal with you?
For residents who need help with eating, are staff trained to do this sensitively?
Activities
Is there a weekly plan of activities?
Did you see an example?
Are residents consulted on what hobbies/interests they have?
Are special events e.g. birthdays celebrated in the home?
What form of exercise, if any, are residents encouraged to take?
Does the home take residents on trips outside the home?
Does the home have access to transport?
Is it possible to take part in activities outside the home?
Would the care home be able to help with transport to these?
Are daily newspapers available for residents?
Does the home have access to a library facility?
Can residents be taken to places of worship?
Can residents take part in the daily activities within the home if they wish, e.g. cleaning, gardening, cooking?
Is there a residents committee?
Can relatives/friends help with activities?
Did you see any photographs of activities in the home?
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For more information

call 1300 302 350 or visit
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Useful contacts
Aged Care and Community Care Information Line
Dementia Behaviour Management Advisory Service
Telephone: 1800 500 853
Telephone: 1800 699 799 (24 hours a day)
Alzheimers Australia
Dementia Enabling Environments
National Dementia Helpline: 1800 100 500

www.fightdementia.org.au
www.enablingenvironments.com.au
Dementia technology website (Baptist Community Services)
ACT
02 6255 0722
SA
08 8372 2100
NSW 02 9805 0100
TAS 03 6228 4724
NT
08 8948 5228
VIC 03 9815 7800
QLD
07 3895 8200
WA 08 9388 2800
www.dementiatechnology.org.au
Department of Health and Ageing
Telephone: 1800 020 103
www.health.gov.au
Bupa Aged Care

Telephone: 1300 302 350
Department of Veterans Affairs

Telephone: 133 254 or for rural callers telephone: 1800 555 254
www.dva.gov.au
Centrelink
Telephone: 13 27 17
Multilingual/Other language Telephone: 13 12 02
www.humanservices.gov.au/carers
DPS guide to aged care

Telephone: (08) 8276 7999
www.agedcareguide.com.au
Carer Resource Centre
Independent Living Centres
Telephone: 1800 242 636

www.carersaustralia.com.au
Telephone: 1300 885 886

www.ilcaustralia.org
Commonwealth Respite and Carelink Centre
My Aged Care (Department of Health)
Telephone: 1800 052 222

www.commcarelink.health.gov.au
Telephone: 1800 200 422

www.myagedcare.gov.au
Companion Cards
National Continence Foundation of Australia
Companion Card Information Line: 1800 650 611

www.companioncard.org.au
National Continence Helpline: 1800 330 066

www.continence.org.au
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Contact your nearest Bupa Aged Care home

Call us 1300 302 350
Like us on Facebook
Follow us on Twitter
Bupa Care Services would like to acknowledge the valuable contribution made
by Alzheimers Australia to the production of:
Caring for someone living with dementia.
The Network is an initiative developed by Alzheimers Australia and founded

to promote collaboration between dementia care researchers, consumers and
service providers with the objective of improving the quality of dementia care.
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Internationally, Bupa has a proud record of promoting research while providing

aged care and dementia care services. Within Australia, Bupa is proud to
support the Australian National Quality Dementia Care Network.

Caring For Someone With Dementia

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Caring For Someone With Dementia

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What are some common types of dementia?

What are some common types of dementia?

What are some signs that someone may have dementia?

What are some signs that someone may have dementia?

Aged Care

Caring for someone living with dementia

How can I tell if someone has d

Different types of dementia

What should I do if I think a relative or friend has dementia?

Caring for someone living with dementia

Helping with managing finances

Eating and drinking

Dressing and personal care

Washing and bathing

Using the toilet and continence problems

Coping with unmet needs

Taking care of yourself

Thinking about residential care

Visiting someone in an aged care home

Checklist to find the right aged care home

Caring for someone living with dementia

We know that much of your

Bupa Aged Care is a leading

Caring for someone living with dementia

An individual may have

Caring for someone living with dementia

How can I tell

accurate diagnosis made

Difficulties with thinking, such

The later stages of dementia

There is no cure for dementia,

Caring for someone living with dementia

We give some practical tips for

skills deteriorate, the person

As the disease progresses,

Caring for someone living with dementia

are not. Insight and awareness

is damaged by tiny strokes,

deposits found in nerve cells.

(knowing what it is that we

Caring for someone living with dementia

Help you to plan for the

Caring for someone living with dementia

A thorough physical and

remember everything you want

Caring for someone living with dementia

Maintaining a sense of self and

from other people. It is common

Some children feel its their

Try to respect the privacy and

It may be more difficult to

Try to focus on the things the

and regular visits by others. This

Caring for someone living with dementia

Friendly prompts about the times

Safety and security

Caring for someone living with dementia

Here are some points on safety

early stages of dementia as