Learn about Dementia

A beginner's guide for people living

with dementia and their loved ones
 Table of Contents

1 Dementia: the basics 3-7

What is dementia? 3
How many people have dementia? 3
What are the early signs of dementia? 3-4
How is dementia diagnosed? 5
How can I encourage my loved one to see a doctor? 6
How do I tell someone they have been diagnosed with dementia? 7

2 Different types of dementia 9-10

Alzheimer’s disease 9
Vascular dementia 9
Lewy body disease 9
Frontotemporal dementia 10
Mixed dementia 10
Younger onset dementia 10

3 Treatment options for managing dementia 12-14

Overview 12
Using drugs to relieve dementia symptoms 13
Questions to ask your doctor about dementia drugs 14

4 Common dementia symptoms and how to offer support 15-21

Wandering 16
Hallucinations and Paranoia 17
Depression 18
Sundowning 18
Aggressive behaviour 19
Anxiety 19
Losing inhibitions 20
Dementia and Pain 21
Dementia and Communication 22

Resources 23
 Dementia: the basics

What is dementia?

Dementia is a general term that describes a decline in memory, rationality, social skills and
functioning. It is not one specific disease, but refers to a collection of symptoms that are
caused by different diseases of the brain. It significantly and progressively impacts a person’s
thinking, behaviour, memory and ability to perform everyday tasks and maintain relationships.
Dementia can happen to anybody. Although it is more common after the age of 65, not all
older people get dementia. It is not just a normal part of ageing.

How many people have dementia?

It is estimated that 459,000 Australians are living with dementia1. Around 250 people are
being added to that number each day, with the number of new cases of dementia expected
to increase to an estimated 318 people per day by 20252.
On a global scale, an estimated 50 million people have dementia. It is one of the major
causes of disability and dependency among older people worldwide3.

What are the early signs of dementia?

Early signs of dementia are subtle, and may not be immediately obvious to yourself or those
around you. They can also vary depending on the specific disease a person has, although
many people tend to first notice a problem with their memory.
Here are some early warning signs of dementia, if you think some of these signs apply to
yourself or a loved one, it’s important to see your doctor sooner rather than later.

1
Dementia Australia (2018) Dementia Prevalence Data 2018-2058

3
2
NATSEM (2016) Economic Cost of Dementia in Australia 2016-2056
3
World Health Organisation
 Signs of Dementia
Memory loss that impacts everyday life
It’s normal to forget an appointment or someone’s name, but remember them
later on. One common sign of dementia is forgetting information frequently, or
asking the same question over and over again.

Difficulty with abstract thinking

Tasks like keeping track of bills, planning the family schedule or following a
familiar recipe can become difficult for people living with dementia. They may
find it hard to concentrate, or find tasks take much longer than usual.

Problems completing familiar tasks

Things that are usually easy to do – for example, driving to the local shops,
serving dinner, making a cup of coffee, doing a simple job at work – can start
to become difficult to complete.

Being confused about time and place

We all sometimes forget what day of the week it is. People living with
dementia can find it hard to understand the passing of time, especially
events that aren’t happening immediately. They may also forget where they
are or how they got there.

Difficulty making sense of visual information

This includes being less sensitive to differences in contrasting colours,
? problems locating people or objects even if they are in front of you, finding
it hard to judge distances while driving and difficulties reaching for things
(e.g. a door handle or cup on the table).

Problems with language that you haven’t experienced before

A person living with dementia may have trouble engaging in a conversation
(when previously they have been able to), stop in the middle of talking with no
idea how to continue their sentence, repeat themselves, or struggle with
vocabulary that is usually familiar to them.

Misplacing and losing things

It’s normal to forget where you put your keys from time to time. Someone with
dementia may frequently lose their things, or place things in unusual places
(for example, put their phone in the fridge).

Decreased decision-making ability

An early sign of dementia is experiencing a change in a person’s
decision-making ability, such as paying too much for something, paying less
attention to cleanliness, dressing for the wrong weather, or struggling to
understand what is fair and reasonable.

Withdrawing from social circles

A person with dementia may experience a change in their desire to socialise
with others. They may become withdrawn, stop talking to their friends, or stop
doing hobbies and activities they previously enjoyed.

Change in personality and mood

Personality changes are common with people living with dementia, such as
becoming more irritable, fearful, apathetic or anxious. They may also get
upset more easily, or act inappropriately in social settings.

4
 How is dementia diagnosed?

It’s important not to assume you – or your loved one – has dementia if you notice some of
the symptoms above. Many treatable conditions can cause memory loss, change in mood or
confusion.
The best thing to do is to book an appointment with your GP to talk about your concerns.
They will be able to assess you and either confirm or rule out a diagnosis of dementia. While
this may seem frightening, getting an early diagnosis will help you in the long run, allowing you
to access advice, support and treatments that can prepare you for the future and slow down
the progress of the disease.
Currently there is no single test to determine if someone has dementia. An assessment usually
involves discussing your medical history, including changes in your memory and thinking. The
doctor will also most likely give you a physical examination, blood tests and urine tests to check if
other conditions may be causing your symptoms (e.g. vitamin deficiency, infection or a metabolic
disorder).
You will also most likely be given cognitive tests to evaluate thinking functions such as
memory, concentration and problem solving. Cognitive tests are also used to differentiate
between different types of dementia. Some cognitive tests commonly used include:

• Mini-Mental State Examination (MMSE)

• Alzheimer’s Disease Assessment Scale (ADAS)
• Neuropsychological testing done by a specialist
• Radiological tests (these involve an X-ray)
• Brain imaging techniques (these involve a CAT scan or MRI)

Your GP may perform these assessments and/or they may refer you to a specialist such as a
geriatrician, neurologist or psychiatrist.

Tips

• If you can, take someone with you

to your appointment, such as a close
family member or friend. They can
provide moral support, and help give the
doctor any further information about
changes they have noticed.

• Before your first appointment, write

down a list of all the cognitive issues that
you have noticed, including when you
first noticed them and how frequent they
are. Also bring a list of all the medica-
tions you are taking.

• If English is not your native language,

special arrangements can be made for
your cognitive tests. Ask your GP for
more information.

• Don’t be afraid to ask questions about

any tests used in your diagnosis, such as
when the tests will be conducted, how
you can prepare, how long the tests will
take, if any cost is involved and how you
will receive the test results.

5
 ? I suspect my loved one may have dementia.
How can I encourage them to see a doctor?

Some people may be unwilling to see a doctor about their symptoms. This may be
because they are fearful of being diagnosed with dementia, or because they don’t think there
is anything wrong with them – perhaps due to a diminished ability to recognise they are
struggling.

If you suspect your loved one may be showing signs of dementia, it’s important to gently
encourage them to talk to a doctor. Set aside a time when you both won’t be rushed, and
plan to have a conversation in a non-threatening place where they can hear and you can
speak freely (i.e. in their home rather than a public space).

You could start the conversation by asking them how they’ve been feeling – if they are
struggling with anything or feel different from usual. Gently share what you’ve noticed, and
suggest some other common reasons that might be the cause, such as lack of sleep or
stress. Then you may want to suggest they see a doctor to find out what’s happening.
Above all, offer your support. Let them know that you are raising your concerns because you
care about them.

If the person is still resistant to seeing a doctor, Dementia Australia suggests finding a
different reason to see the GP, such as getting a symptom that the person is willing to
acknowledge checked.

If you want to talk to someone about how to approach the situation, you could also book an
appointment with a doctor yourself and ask for advice, or call the National Dementia Helpline
on 1800 100 500 for help.

6
 ? How do I tell someone they have been
diagnosed with dementia?

Telling someone they have a diagnosis of dementia can come from several people: their
GP, a specialist, or members of the family. It’s best to plan ahead so you can ensure the
information is shared with sensitivity, empathy and dignity.
Although every conversation is different, prepare to share why their symptoms are happening,
what form of dementia they have (in a way that is appropriate to their level of understanding),
possible treatment for symptoms, and what services are available to support them.

Here are some things that may help the conversation:

• Speak slowly, clearly and directly to the person
• Choose a place that is quiet with no noise or distractions
• Consider having a loved one there to provide support
• Give them time to absorb the information and ask questions
• It can be helpful to provide a written guide about dementia to take away, so they can
read it when they are ready to learn more about their diagnosis. Ask your GP or specialist
if they haven’t provided this information already.

While it is recommended that someone with dementia be informed of their diagnosis, keep
in mind that a person has a right not to know their diagnosis, if that is their clear and informed
preference.
Also, don’t forget to look after yourself. A diagnosis of dementia can be upsetting for everyone.
Dementia Australia offers confidential counselling and support for families, carers and people
with dementia. You can access these services by calling 1800 100 500 between 8am-8pm on
Mondays to Fridays (excluding public holidays).

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Different types of dementia
Different types of dementia

Dementia is not one specific disease, but an ‘umbrella’ term that covers a collection of
different neurological disorders. The major symptom common to all of these diseases is a
decline in brain function which affects your ability to carry out everyday tasks.
There are over 100 types of diseases that can cause dementia. Here are some of the more
common ones that you might come across.

Alzheimer’s Disease

Alzheimer’s Disease is one of the most common types of dementia, accounting for up to
70% of cases. It occurs when abnormal protein deposits form ‘plaques’ and ‘tangles’ in the
brain. This causes the connection between nerve cells to be lost and the cells to die, which
impairs a person’s memory and cognitive function.
The outer part of the brain is usually the first area affected by Alzheimer’s disease, resulting
in short term memory loss.
Other symptoms include changes in personality, vagueness in conversation, lapses in
judgement, being disorientated about time and place, loss of enthusiasm for previously
enjoyed activities and difficulty with performing usual tasks.

Vascular dementia

Vascular dementia occurs when there is damage to the blood vessels in the brain. In order
to function, our brains need a constant supply of oxygen from the bloodstream. If this flow is
interrupted for long enough, brain cells can die.
Any condition that disrupts normal blood flow to the brain can cause Vascular dementia,
such as a stroke, several mini-strokes over a period of time (leading to Multi-infarct dementia)
or Vascular disease. Symptoms vary, depending on which part of the brain is affected; it may
impact just one or a few cognitive functions. Anyone can be impacted by Vascular dementia,
but factors such as high blood pressure, smoking, diabetes and high cholesterol can increase
the risk.

Lewy body disease

Lewy body disease is a common type of dementia that is similar to Alzheimer’s disease. It
occurs when abnormal structures called ‘Lewy bodies’ develop inside the nerve cells of the
brain’s cortex, which is responsible for thinking, perception and language processing.
There are three cardinal symptoms associated with Lewy body disease, two of which must
be present to make a diagnosis. These are visual hallucinations, ‘Parkinsonism’ (movement
problems similar to those seen in Parkinson’s disease, such as tremors, slow movement and
stiffness) and fluctuations in a person’s mental state which causes them to be thinking clearly
at one time, then confused or disorientated in a matter of minutes or hours.

9
Different types of dementia

Frontotemporal dementia

Frontotemporal dementia refers to a group of diseases where one or both of the frontal and
temporal lobes are damaged. Symptoms often begin gradually, then slowly progress over a
period of years.
The frontal and temporal part of the brain controls emotional expression, behaviour,
personality, problem solving and language. Because of where the damage is, people who
have this form of dementia often have problems maintaining socially appropriate behaviour.
Other symptoms include loss of empathy, inability to adapt to new situations, loss of normal
inhibition, impulsiveness and decline in self-care. Unlike Alzheimer’s disease, memory is often
unaffected in frontotemporal dementia, especially in the early stages of the disease.

Mixed dementia

Mixed dementia is when a number of neurological conditions may contribute to dementia

in a person. A common combination is Alzheimer’s disease and Vascular dementia, or
Alzheimer’s disease and Lewy’s body disease.

Younger onset dementia

Younger onset dementia is any form of dementia that occurs in someone who is under the
age of 65. Dementia has been diagnosed in people in their 50s, 40s and even in their 30s,
although it is less common. Because of this, it can often go unnoticed in people who are
working-aged. It also comes with unique challenges, as the person who has been diagnosed
is more likely to be working full time, physically strong and healthy, raising kids or financially
supporting a family.

10
Treating dementia symptoms
Treating dementia symptoms

Non-drug treatments

Although plenty of progress has been made in dementia research, there is currently no cure
for most forms of the disease. However, there are things you can do to manage the condition,
slow the disease’s progress and maintain a positive outlook on life.

These include practical steps like:

• Moving your body – regular exercise maintains blood flow to the brain and improves your
overall health and wellbeing.
• Enjoying a healthy diet – enjoying a range of nutritious food can be difficult if you are living
with dementia, as you may forget to eat, struggle with preparing meals, or find using cutlery
difficult. Eating well is a key factor in staying healthy and avoiding health problems, so it’s
worth getting support to help you enjoy a balanced diet.
• Doing your favourite hobbies – Engage in stimulating activities that you enjoy on a regular basis.
Talk to your loved ones to develop a plan for how you can keep doing the things you love.
• Considering your environment – Changing your home lay out to suit your needs and reducing
triggering situations may be helpful for quality of life (e.g. removing trip hazards and installing
night lights in the hallways).
• Caring for your mental health – Talk therapy such as sessions with a counsellor or a support
group can help you cope with receiving your diagnosis. Cognitive Behaviour Therapy can also
help with anxiety and depression.
• Memory and orientation exercises – taking part in Cognitive Stimulation Therapy sessions
can help you continue to learn and stay socially engaged.
• Music therapy – research shows music can help people with dementia tap into long-term
memory and improve their mood.
• Telling your story – Recording your life story can improve your wellbeing and give you a
sense of purpose. Chat to your loved one about how they can help you record your stories
and create a meaningful memento for years to come.
• Art therapy – expressing yourself creatively can help boost your confidence, improve your
mood and help you stay social engaged.
• Contact with animals – interacting with dogs, for example, can have significant social benefits
for people with dementia, and provide an opportunity for exercise.

If you have been diagnosed with dementia, getting support for both you and your family is vital.
The earlier you get help, the better you can plan ahead and get all the information you need.
Your local GP is a good place to start, or you can contact the National Dementia Helpline on
1800 100 500.

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Treating dementia symptoms

Using drugs to relieve dementia symptoms

There are some drugs that can help reduce some of the symptoms experienced by people
with dementia. Medication must be prescribed by a doctor; different drugs have side-effects
and may counteract with other medications you are taking. Your doctor can advise you on
what you can expect if you take a certain drug, and ensure you are taking the right dose.

Drugs currently available in Australia can help manage the following symptoms:

Cognitive problems

Cholinergic treatments using cholinesterase inhibitors can help some people with Alzheimer’s
disease for a limited amount of time. This drug effectively blocks an enzyme that destroys an
important neurotransmitter needed for memory.
Memantine is another drug approved for use for people with Alzhiemer’s disease. It blocks the
action of glutamate (another brain chemical) and prevents too much calcium moving into the
brain cells. This can help improve cognition in some people.

Depression and anxiety

In some cases, depression (and symptoms of anxiety that are caused by underlying depression)
can be effectively treated by prescribing anti-depressants. Like all drugs, anti-depressants come
with side-effects, so care must be taken to make sure this risk is minimised.

Problems with sleep

In some cases, medication to help people who experience sleep disturbances can be
prescribed. People can become dependent on these drugs, though, so caution is required.

Behaviour

In some cases, major tranquilisers (also called neuroleptics or anti-psychotics such as

Risperidone) can be used to control behavioural disturbances such as hallucinations,
aggression and agitation.
This is considered a second line of treatment after non-drug approaches have been
exhausted. The Cochrane review on antipsychotics concluded that “neither risperidone nor
olanzapine (another antipsychotic) should be used routinely to treat dementia patients with
aggression or psychosis unless there is severe distress or risk of physical harm to those living
and working with the patient”4.

4
Atypical antipsychotics benefit people with dementia but the risks of
adverse events may outweigh the benefits, particularly with long term
treatment, 2006

13
 ? Questions to ask your doctor about
prescriptions for dementia

Getting detailed information is key to making a good decision about treatment for yourself
or your loved one. Here are some questions you can ask your doctor before being prescribed
a drug for dementia-related symptoms.

• How will this drug benefit me?

• What symptoms are being targeted by this drug?
• What research or clinical trials back the effectiveness of this drug?
• How long until I can expect to see results?
• How will you monitor the effectiveness of this drug?
• What are the known side-effects of this drug?
• What should I do if I miss a dose?
• What medicines, including alternative therapies and herbs, might interact with the
drug? It’s important to tell your doctor what medication you are already taking, in case it
interferes with the drug.
• What things should I look out for and report immediately once I start taking the drug?
• How often and for how long will I take the drug?
• At what stage of the disease do you think it is appropriate to stop taking this drug?

14
Common dementia symptoms
and how to offer support
Common dementia symptoms and how to offer support

If you have dementia or are caring for a loved one with dementia, it can be helpful to
understand some of the symptoms so you can address them in an effective way. Below are
some of the more common behaviours associated with dementia, and some suggestions
on how to address them.

Wandering

It is common for people with dementia to have a tendency to wander away from familiar
surroundings. This can be stressful for family and carers, as there is a risk of the person
getting lost or compromising their safety.
Some of the reasons people may wander include setting off for a familiar destination then
forgetting where they were going, being disoriented in a new environment, needing to stay
occupied, continuing a habit (they may be used to walking long distances) or needing to deal
with feelings of agitation.

What you can try:

• Consider if there are any emotional reasons why the person is wandering. Are they
anxious, agitated or frightened? Are they bored and in need of stimulation?
• Get a check-up to see whether pain or illness is causing periods of wandering. It may
also be worth discussing potential side-effects of any medication the person is taking.
• Make sure the person carries identification that includes their current address and a
phone number.
• Provide opportunities to go for walks to occupy their time.
• Make sure the person can see a clock and a calendar to remind them of the time and
date
• Consider removing objects from sight that may encourage wandering (e.g. coats, hats,
handbags) and disguising doors.
• Consider buying an alarm which will let you know when a door or window has been
opened.
• If your loved one goes missing, stay calm so you can think clearly. Thoroughly search
the house, make a note of what the person was wearing, tell your neighbours, search
around the block and any immediate area the person may regularly visit. You should also
contact your local police for help. They will require details and a description of the person
(having a photo can be useful too).

16
Common dementia symptoms and how to offer support

Hallucinations and paranoia

When a person has dementia, their brain may distort their senses and ‘play tricks’ on
them. This can lead to hallucinations, which is experiencing something that isn’t actually
there (e.g. hearing voices that no one else can hear, seeing people that no one else sees).
People with dementia can also experience paranoia: a false perception which causes
them to be suspicious of other people. They may accuse a carer of trying to take their
possessions, or believe their partner has been unfaithful. This makes sense if you have
problems with memory and things ‘disappear’ or explanations don’t make sense
because conversations have been forgotten.

Things you can try:

• It is important to see a doctor if you or your loved one is experiencing hallucinations or

paranoia. This can help rule out other causes, such as side-effects of medication.
• If a person is hallucinating, try to gently explain what is happening. If this is not possible,
don’t argue, as this isn’t helpful and can be distressing for everyone.
One helpful tip is to respond by saying, “I know you hear something, but I don’t hear it”
as you are acknowledging the person’s experience, but responding honestly without
starting an argument.
• Distract the person, if possible, with music, an enjoyable activity or exercise.
• Acknowledge the person may be frightened by what they are seeing or hearing, and
offer reassurance.
• If possible, maintain consistent and familiar care givers in your loved one’s routine.
• Make note in a diary of whether their behaviour occurs at particular times or with particular
people.
• Check your environment for things that might be misinterpreted. Do you need to turn
on lights to reduce shadows that can be mistaken for other things? Are there objects you
may need to remove?

17
Common dementia symptoms and how to offer support

Depression

While we all feel sad from time to time, people who experience depression can feel this way
more intensely, for long periods of time. It is a serious condition that has a significant impact
on a person’s physical and mental health.
It is estimated that around 20% to 30% of people with dementia may also have depression at
any given time.Changes to a person’s independence and decreased self-esteem can contribute
to the condition, but it can often go unnoticed as it is hard to distinguish the symptoms of depres-
sion with those of dementia.

What you can do:

• Take the person to see a doctor. They can accurately diagnose depression with a thorough
evaluation, especially in the presence of dementia which has similar symptoms. They can
also provide options for treatment and determine the most appropriate approach. This can
make a huge difference in the person’s quality of life.
• Encourage the person to eat healthy meals and take part in regular exercise.
• Help your loved one do something enjoyable every day.
• Make sure they have regular social contact with familiar people.
• Keep to a predictable routine and minimise stress and anxiety in their lives.

Sundowning

Sundowning is when people with dementia become particularly irritable, aggressive,

agitated or confused in the late afternoon or early evening. It is quite common, although
researchers aren’t quite sure what causes it. One suggestion is that changes in the brain
affects our biological clock, which confuses our sleep-wake cycles.
When a person experiences sundowning, they may start wandering or pacing, have
hallucinations, yell or have trouble falling asleep. It is worth checking if they are hungry or
uncomfortable (and unable to express this), or if they are experiencing pain.

Things you can try:

• Listen to the person’s frustrations and reassure them everything is okay.

• Increase the person’s exposure to natural light by encouraging them to spend some
time outside and opening the curtains.
• Stick to familiar activities in the early evening that are part of the person’s routine.
• Offer support and suggest activities they find relaxing and comforting, such as hearing
a favourite tune, spending time with a pet or enjoying a familiar hobby.
• Let the person walk around, if that helps.
• Consider if tiredness is making sundowning worse. If so, an early afternoon rest might
be helpful.

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Common dementia symptoms and how to offer support

Aggressive behaviour

Aggressive behaviour includes things like hitting out, damaging property, physical violence,
verbal abuse or making threats towards another person. Sometimes this is caused by
changes in the brain. Other times, there may be other triggers that cause the person to react
in an aggressive way.
Some of the common causes of aggressive behaviour in someone with dementia are
fatigue, hallucinations, a defensive reaction to feeling like their independence is being taken
away, misunderstanding, fear, over-stimulation from loud noises, or frustration from being
unable to understand what someone is trying to say. What you can try:

• Talk to their person’s doctor, who can check if there is a physical reason for aggression.
• Make sure you communicate in a way that matches your loved one’s ability to comprehend
what you are saying.
• Address possible causes of stress.
• Keep to a consistent routine and try not to rush the person.
• Stay calm and address the underlying feeling, if possible.
• Avoid confrontation by using distraction or suggesting an alternative activity.
• If you feel unsafe, stay out of reach.
• Aggressive behaviour can be distressing for family members and carers. Remember
that the person with dementia is not doing it deliberately. Make sure you take care of
yourself by talking to someone (a counsellor, friend or doctor) and take time out for
respite.

Anxiety

Anxiety in people with dementia can be caused by changes in the brain, not understanding
what is happening, pressure from coping with everyday demands, or attempting a task and
feeling like a failure when it is done incorrectly. Anxiety can also be a symptom of depression.
People who are in the early stages of dementia may express anxiety because they are
worried about their memory loss and what will happen in the future. Someone in more
advanced stages of dementia may not be able to tell you that they are feeling worried. They
may be restless, pace back and forth, fidget or follow you around and get upset if you
attempt to leave the room. What you can try:

• Provide reassurance and support by speaking gently and encouraging the person to
talk about what’s worrying them.
• Consider whether there are too many demands made on the person, and try to reduce
these.
• Make sure the person is eating healthily and getting enough exercise.
• Swap caffeinated drinks for non-caffeinated options.
• Talk to a doctor. If you suspect that depression is an issue, a doctor can help provide
the right course of treatment.

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Common dementia symptoms and how to offer support

Losing inhibitions

Disinhibited behaviour is when people don’t follow social rules about what to do or say in
public. It can be upsetting for friends and family members, especially if someone who has
previously been considerate starts to act in a seemingly offensive way.
Disinhibited actions include making rude remarks, saying things that aren’t appropriate, not
having social manners, inappropriately flirting with someone, taking clothes off at inappropriate
moments and sexual disinhibition (e.g. publicly fondling themselves in front of others).

What you can try:

• Remember that your loved one isn’t behaving this way on purpose; they cannot help it
because of their disease. React with patience, even if you may feel embarrassed.
• Consider why the person with dementia is behaving in this way. While it could be
because of changes in their brain, other causes of disinhibited behaviour are confusion,
feeling uncomfortable (e.g. removing clothes because they are too tight), boredom,
forgetting skills like how to use a toilet or feeling disorientated.
• Check with a doctor to see if there is an underlying health reasons for the behaviour,
such as pain or discomfort.
• Give the person appropriate physical reassurance, such as hugging and stroking
(though make sure they are willing to accept this).
• If inappropriate sexual behaviour is the issue, gently remind the person that the
behaviour is not appropriate and try to distract them by giving them something else to do.
• It may be helpful to explain to others why your loved one is behaving in this way, so they
can understand the situation.
• Take care of yourself and make sure you take breaks when you need to.

Repetitive behaviour

People living with dementia may make the same statement, ask the same question, or carry
out the same activity over and over again. This can be frustrating, but keep in mind that the
person isn’t doing it on purpose. They may be unable to remember what has been said, or
are looking for reassurance.

What you can do:

• Speak to them kindly and answer the question like you are being asked it for the first
time. Try to find out why they are asking a question. Are they hungry? Are they lost? Are
they feeling an emotion that needs to be acknowledged?
• If they aren’t happy with your explanation, try a distracting activity, such as a walk or
listening to music.
• To help with repetitive movements, try giving the person something to do with their
hands, such as a squeeze ball or a puzzle.

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Common dementia symptoms and how to offer support

Dementia and Pain

Although pain is not a specific symptom of dementia, it is worth mentioning because people
with dementia are often less able to tell others when they are experiencing pain.
Dementia leads to the gradual deterioration of a person’s ability to communicate with others
and understand what is happening. In the early stages, they may be able to recognise and
report instances of pain, but as the disease progresses, this may change. They may be
unable to say where the pain is, how severe it is, when it occurs or remember to take
medication for relief.
It is possible to assess if someone is in pain by looking for non-verbal signs. These signs
may be an indication that someone with dementia is experiencing pain, but they could also
be just a change in the person’s behaviour. Signs include:

• Grimacing and expressions that show pain on a person’s face

• Hand gestures that indicate distress
• Moaning when the person moves
• Guarding a body part
• Being reluctant to move
• Restlessness
• Crying
• Increased or decreased vocalisations
• Being withdrawn
• Irritability
• Decreased appetite

Health professionals often use a pain assessment scale to investigate potential pain in
someone with dementia, such as the Abbey Pain Scale and the Brief Pain Inventory. Once it
has been identified that someone with dementia is in pain, they should be seen by a doctor
who can determine the best form of treatment.

21
 Communicating with someone
who has dementia

Although someone who has dementia may change their behaviour, they are still the same
person inside. It is important to remember that they still retain their feelings, even though they
may not always understand what is being said.
Maintaining the person’s dignity and self-worth is crucial. When you talk to them, don’t be
condescending, argumentative or order them around. Instead, remain calm, keep sentences
short and simple, use orienting names and labels (for example, your brother Dave) and give
them plenty of time to respond.
Here are some top tips on how to effectively communicate with someone who has dementia:

Never Instead

Argue Agree
Reason Divert
Shame Distract
Lecture Reassure
Say ‘Remember…’ Reminisce
Say ‘I told you…’ Repeat
Say ‘You can’t’ Say what they can do
Demand Ask
Condescend Encourage
Force Reinforce

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 Resources

Receiving a diagnosis of dementia can be a difficult journey, but you don’t have to do it
alone. Alongside your GP and your own network of friends and family, here are some places
you can turn to for support.

National Dementia Helpline: 1800 100 500

This is a free confidential phone support service. It operates from 9am to 5pm Monday to
Friday.

Dementia Australia website: www.dementia.org.au

Dementia Behaviour Management Advisory Service: 1800 699 799

This is a support service for people with dementia who are experiencing changes in behaviour
that impact their care or the carer.

Alzheimer’s Association: www.alz.org

My Aged Care: 1800 200 422 or www.myagedcare.gov.au

This provides information about Australia’s care system, assessments and any support you
may be eligible for.

Carer Gateway: www.carergateway.gov.au

Carers Australia: www.carersaustralia.com.au

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