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Caring for someone with dementia can be
challenging.
This booklet has been jointly developed by Home Instead Senior
Care and Alzheimer’s Australia to help people caring for those with
dementia.
• This booklet explains what dementia is and how it may affect people.
• Suggests ways a carer can provide practical support.
• Provides tips for communication and activities specific to the
condition.
• Includes information about where to find additional resources for
carers.
Alzheimer’s Australia
Alzheimer’s Australia’s mission is
to reduce the impact of dementia on the community. They offer a range of
services for people with dementia, family carers, professional caregivers and
anyone who wants to know more about memory loss, dementia, or good
brain health.
For more information visit www.fightdementia.org.au
Table of Contents
Dementia 4
What is dementia? 4
Types of dementia 4
Stages of dementia 5
How can I support a person living with dementia? 6
Communicating effectively with a person with dementia 8
Understanding behavioural symptoms of dementia 11
Understanding techniques to manage changes in behaviour 13
Stimulating activities for people living with dementia 13
Organisations and services that can assist you 15
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Dementia
A diagnosis of dementia can have an emotional effect on the person
diagnosed and their family and friends. The aim of this guide is to
give carers a better understanding about dementia and provide a
guide on how to care for people living with dementia.
What is Dementia?
In 2015, there are more than 342,800 Australians living with dementia.
Dementia is not a normal part of the ageing process and, whilst age is a risk
factor, dementia can affect adults of all ages.
However, dementia is the single largest cause of disability in people over 65 and
one in four people over the age of 85 has dementia. Each week, there are more
than 1,800 new cases of dementia diagnosed in Australia. This is equivalent to
approximately one person diagnosed with dementia every 6 minutes.
Dementia is a progressive disease that affects the brain, resulting in nerve cells
and brain tissue death. This affects a person’s memory, intellectual abilities,
social skills, and emotional reactions. It can also result in changes in personality,
and affect a person’s ability to maintain relationships.
Types of dementia
Dementia is a term that describes the symptoms of a large group of
degenerative diseases of the brain. There are over 70 different types of
dementia, however the most common forms of dementia are Alzheimer’s
disease and vascular dementia.
Source: www.fightdementia.org.au
Stages of dementia
Every person with dementia is unique, and no two people have the same
symptoms or deteriorate at the same rate and their abilities may change from
day to day, or even within the same day. What is certain though is that their
cognitive abilities will deteriorate, sometimes rapidly over a few months or in
other cases more slowly and gradually over a number of years.
The early stages of dementia are often only apparent in hindsight. At the
time it may be missed, or put down to old age, or overwork. The onset of
dementia is usually very gradual, and it is often impossible to identify the exact
time it began. In this stage, people with dementia retain some insight into
their situation, but become more confused and forgetful. They may begin to
lose language skills, have trouble handling money and paying bills, forget once
familiar tasks and may experience personality changes.
The middle stages of dementia are when the problems of memory loss or
confusion become more apparent, and have a greater impact on a person’s
ability to maintain their independence. They may forget or not recognize family
and friends, repeat themselves often, and have problems sequencing tasks like
putting on clothes or the steps required to have a shower or prepare a meal.
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The later stage of dementia is when the person has become profoundly
disabled and unable to manage their daily living activities requiring full care and
assistance with tasks such as eating, washing, dressing and toileting.
Socialisation and support are important at all stages of the dementia journey, but
they are a key intervention during the middle stage.
Structuring the day, arranging activities, and preventing isolation are important goals.
It is important to remember that not every person with dementia will
go through every stage. However these three stages provide a useful
description of the general progression of the disease.
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N o n -v e r b a l c o m m u n icati o n
Non-verbal communication is an important tool to help you listen to and
communicate more effectively with people with dementia. As much as 93% of
meaning can be derived from our body language and tone/pitch of voice.
People with dementia may lose the ability to effectively communicate their
thoughts verbally and may use their behaviour and other emotions to
communicate.
When communicating with someone with dementia it is important
to remember that all behaviour is a form of communication.
We all use non-verbal communication and body language to convey messages.
People with dementia will read and react to your body language.
Below are some tips to help you communicate more effectively with someone
with dementia:
• Be aware of your body language and attitude. For example agitated
movements or a tense facial expression may cause upset or distress, and can
make subsequent communication more difficult.
• To gain a person’s attention, limit distractions and noise, and maintain eye
contact with them. Always try to speak to them at their eye level so they can
see your expression clearly.
• Provide simple choices. Ask one question at a time – yes or no questions
work best. Visual cues and prompts are a good way to increase
understanding.
• Never argue or raise your voice. Arguing or shouting will only increase levels
of frustration and agitation.
• Listen with your ears, eyes and heart. Always strive to listen for the meaning
and feelings that underlie the words.
As dementia progresses, a person’s reality often becomes one of the past and
they may retreat back in time. Trying to reorientate a person with an altered
reality can cause distress and trigger behavioural symptoms of dementia..
Alternative communication approaches will help you to build trust and provide
support. You may already use these therapies without realising that you are or
when they can be most effective.
The key to providing quality care for someone with dementia is the relationship
between the person and their carer. When implementing communication therapies,
it is crucial to know and understand the personality and life story of the person
with dementia as this will make the communication strategies more effective.
You may encounter behaviours that are uncharacteristic or even odd, and
this can be particularly upsetting when someone is behaving in a way that
is completely out of character. Try to remember that the behaviour is not
deliberate and may be a result of changes taking place in the brain.
It is also important to remember that all behaviour is a form of communication
particularly for people with dementia as they find it difficult to verbally express
their needs, wants and feelings, and may express such things through their
behaviour.
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A change in behaviour may also be a result of changes in their
environment, health, or even a change in medication.
Simple activities, such as taking a shower may become too difficult as the ability
to recall the steps required during the showering process may be lost. As a
direct result of the changes taking place in the brain, a person with dementia
may react in a catastrophic way to some situations or present a range of
different behavioural symptoms of dementia. This behaviour could include
vocal outbursts or actions such as hallucinations, paranoia, or even violence.
Every person with dementia is unique and will experience dementia in their
own way and this may not involve any behavioural symptoms.
T h e m o r e c o m m o n C H A N G E S I N b e havi o u r p r e s e n t e d
by pe o p l e with d e m e n tia ca n i n c lu d e :
• Apathy and/or depression • Wandering
• Refusal • Aggression
• Repetition • Sexually inappropriate behaviour
• False accusations
Coping with changes in a person’s behaviour can be upsetting for family and
carers. It is important that you understand a range of techniques that you can
use to overcome the challenges that the behaviour may present. You may
even need to use several techniques at once. The key is to remember that the
behaviour is out of the person’s control and though they may not appear to be,
they are in need of reassurance and empathy.
Aggressive behaviour is usually an expression of anger, fear, or frustration.
Try not to take this personally and remain calm at all times, however hard
it becomes. If you become angry or impatient, they will sense this and their
behaviour may be exacerbated, escalating the situation.
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