CHCAGE005 Provide Support To People Living With Dementia Learner Resource

UNIT INTRODUCTION

This resource covers the unit CHCAGE005 Provide support to people living with dementia.

This unit describes the skills and knowledge required to provide person-centred care and support to people living with dementia. It involves following and contributing to an established individual plan.

This unit applies to workers in a residential or community context, including family homes. Work performed requires some discretion and judgement and may be carried out under regular direct or indirect supervision.

The skills in this unit must be applied in accordance with Commonwealth and State/Territory legislation, Australian/New Zealand standards and industry codes of practice.

ABOUT THIS RESOURCE

This resource brings together information to develop your knowledge about this unit. The information is designed to reflect the requirements of the unit and uses headings to makes it easier to follow.

Read through this resource to develop your knowledge in preparation for your assessment. You will be required to complete the assessment tools that are included in your program. At the back of the resource are a list of references you may find useful to review.

As a student it is important to extend your learning and to search out text books, internet sites, talk to people at work and read newspaper articles and journals which can provide additional learning material.

Your trainer may include additional information and provide activities. Slide presentations and assessments in classNameto support your learning.

ABOUT ASSESSMENT

Throughout your training we arecommitted to your learning by providing a training and assessment framework that ensures the knowledge gained through training is translated into practical on the job improvements.

You are going to be assessed for:

Your skills and knowledge using written and observation activities that apply to your workplace.

Your ability to apply your learning.

Your ability to recognise common principles and actively use these on the job.

You will receive an overall result of Competent or Not Yet Competent for the assessment of this unit. The assessment is a competency based assessment, which has no pass or fail. You are either competent or not yet competent. Not Yet Competent means that you still are in the process of understanding and acquiring the skills and knowledge required to be marked competent. The assessment process is made up of a number of assessment methods. You are required to achieve a satisfactory result in each of these to be deemed competent overall.

All of your assessment and training is provided as a positive learning tool. Your assessor will guide your learning and provide feedback on your responses to the assessment. For valid and reliable assessment of this unit, a range of assessment methods will be used to assess practical skills and knowledge.

Your assessment may be conducted through a combination of the following methods:

Written Activity

Case Study

Observation

Questions

Third Party Report

The assessment tool for this unit should be completed within the specified time period following the delivery of the unit. If you feel you are not yet ready for assessment, discuss this with your trainer and assessor.

To be successful in this unit you will need to relate your learning to your workplace. You may be required to demonstrate your skills and be observed by your assessor in your workplace environment. Some units provide for a simulated work environment and your trainer and assessor will outline the requirements in these instances.

ELEMENTS AND PERFORMANCE CRITERIA

PERFORMANCE EVIDENCE AND KNOWLEDGE EVIDENCE

This describes the essential knowledge and skills and their level required for this unit.

PERFORMANCE EVIDENCE

The candidate must show evidence of the ability to complete tasks outlined in elements and performance criteria of this unit, manage tasks and manage contingencies in the context of the job role. There must be evidence that the candidate has:

Provided support to 2 different people living with dementia:

Using a person-centred approach to support

Using appropriate communication strategies

Assisting in implementing a range of suitable activities that meet the person’s needs

KNOWLEDGE EVIDENCE

The candidate must be able to demonstrate essential knowledge required to effectively complete tasks outlined in elements and performance criteria of this unit, manage tasks and manage contingencies in the context of the work role. This includes knowledge of:

Up to date research on dementia and the different manifestations of dementia, including:

o Alzheimer’s disease

o Vascular dementia or multi-infarct dementia o Lewy bodies

o Excessive alcohol intake or korsakov syndrome

o Fronto temporal lobar degeneration (FLTD) including pick’s disease o Huntington’s disease o Parkinson’s disease o Younger onset dementia

Dementia as a progressive neurological condition, including pathological features:

o Amyloid plaques o Neurofibrillary tangles

o Loss of connection between cells and cell death

Common indicators and symptoms of dementia

Behaviours of concern, needs driven behaviour model and de-escalation procedures

Progression of dementia and potential impact on the person with dementia, their family and significant others, including:

o Depression o Loss and grieving o Anger o Despair

o Social embarrassment a family member might feel o Isolation

o Financial burden on the family o Social devaluation

Principles of person-centred approach to support

Relevant activities which enhance self-esteem and pleasure in the person’s life, minimise boredom, and distract from or eliminate behavioural and psychological symptoms of dementia

Competency and image enhancement as a means of addressing devaluation Verbal and non-verbal communication strategies including:

o Reality orientation

o Reminders of the day, the time, relationships, occasions o Reassuring words, phrases and body language o Validation o Empathy

o Acceptance of the person’s reality o Acknowledgement

o Allowing expressions of distress o Providing verbal and physical reassurance o Frequent reminiscence to connect with person

ASSESSMENT CONDITIONS

Skills must have been demonstrated in an ageing support workplace with the addition of simulations and scenarios where the full range of contexts and situations have not been provided in the workplace. These are situations relating to emergency or unplanned procedures where assessment in these circumstances would be unsafe, impractical or threatens the dignity of the older person.

The following conditions must be met for this unit:

Use of suitable facilities, equipment and resources, including individualised plans and any relevant equipment outlined in the plan

Modelling of industry operating conditions, including scenarios that reflect a range of dementia support services involving a range of dementia symptoms and behaviours of concern

Overall, assessment must involve some real interactions with people with dementia, colleagues and families/carers.

Assessors must satisfy the Standards for Registered Training Organisations (RTOs) 2015/AQTF mandatory competency requirements for assessors.

PRE-REQUISITES

This unit must be assessed after the following pre-requisite unit:

There are no pre-requisites for this unit.

TOPIC 1 – PREPARE TO PROVIDE SUPPORT TO THOSE AFFECTED BY DEMENTIA

Dementia is a major health problem in Australia. It has profound consequences for the health and quality of life of people with the condition, as well as for their families and friends.

Because dementia is generally a progressive condition, its impact increases with the growing severity of the condition. Eventually, people with dementia become dependent on their care providers in most, if not all, areas of daily living (unless they die from another condition first).

WHAT IS DEMENTIA?

Dementia is not a disease, but rather an umbrella term for a variety of symptoms that may accompany or indicate certain diseases or conditions. Today over 60 different conditions are known to cause dementia symptoms

After a dementia diagnosis, the focus is often only on the person's symptoms and behaviour rather than on his or her needs. It can seem that there is not much that can be done, which makes it very hard to maintain a positive attitude. However, if you shift your focus and energy to the person's strengths and remaining abilities, it helps you keep a positive attitude and enables you to encourage and inspire improvement, joy, hope, and well-being in those you support.

WHAT IS THE DIFFERENCE BETWEEN DEMENTIA AND ALZHEIMER’S DISEASE?

Dementia is not a disease, but a broad term to cover a group of symptoms; the most common being memory loss. The most common cause of dementia is Alzheimer’s disease, a degenerative disease accounting for between 50 – 70% of all cases. To date, there is no medical cure or preventative for Alzheimer’s. Medical treatments available today can only prolong a stage of dementia for a certain period of time with varying success depending on the product and the individual. It is important to be aware that despite the amazing assessment tools available today, it is still not possible to truly diagnose Alzheimer’s until an autopsy has taken place. Also, in many situations there is no direct link between the person’s neurological changes and the degree of dementia symptoms he or she may experience.

Below are some examples of curable or reversible conditions:

Dehydration can cause confusion and increased memory loss – both symptoms of dementia.

Constipation

Infection. e.g. pneumonia, urinary tract infection or even the smallest infection can cause dementia symptoms.

Vitamin imbalance. Imbalance or lack of ‘brain vitamins’ such as C, E, B6, B12 and folate (folic acid) can also cause dementia symptoms. High homocysteine, levels are associated with an increased risk of cardiovascular disease, stroke and also Alzheimer's disease and other dementias. Adequate intake of vitamin B and folate can help reduce homocysteine levels.

Pain – can cause dementia symptoms.

Medication poisoning. This can occur easily in older people because their bodies are less able to excrete surplus medication, which can build up in the system and create side effects, such as bewilderment, confusion and amnesia; all symptoms of dementia.

Brain tumors – (that can be removed) benign as well as malignant.

Depression can also cause symptoms similar to dementia, such as decreased memory and concentration loss; often leading to misdiagnosis.

Once any of the above existing conditions has been cured, the dementia symptoms are likely to disappear or return to the level they were at before the condition appeared.

Medical research has not yet been able to find any treatment or preventatives for the following conditions:

Alzheimer’s disease (the most common cause of dementia) is a result of damage and changes to nerve cells within the brain. These abnormalities are referred to as amyloid plaques and neurofibrillary tangles which can ultimately destroy nerve cells.

Vascular dementia or multi-infarct dementia (the second most common cause of dementia) and more commonly known as stroke, is a result of the blood supply to the brain being cut off due to clotting or blood vessels

bursting in the brain, (aneurism) destroying surrounding tissue and triggering strokes.

Lewy Bodies dementia (the third most common cause of dementia) is a result of a build-up of Lewy bodies – accumulated bits of alpha-synuclein protein – inside the areas of the brain that control particular aspects of memory and motor control. The dementia symptoms are characterised by pronounced fluctuations in the mood with periods of confusion, followed by greater lucidity, and disturbed visual experiences.

Excessive alcohol intake or Korsakov Syndrome is associated with prolonged alcohol use characterised by personality changes and short-term memory loss.

Fronto Temporal Lobar Degeneration (FLTD) including Pick’s disease is caused by a degeneration occurring in one or both of the frontal and temporal lobes of the brain resulting in significant behaviour and personality changes.

Other less common causes of dementia include Huntingdon’s and Parkinson’s diseases .

EARLY SIGNS OF DEMENTIA

The first signs and changes in a person with dementia may be scarcely noticeable as most often they come on gradually. (Except in cases like multi-infarct dementia, which takes a more step-like decline?) The person or family may initially only notice memory lapses, such as difficulty in remembering dates or finding the right word. The person may use impaired judgement resulting in financial or ill-considered decisions. Behaviour and personality changes may occur too, such as becoming more assertive/more withdrawn, less flexible; showing a loss of interest in things that have mattered previously, becoming absent-minded or repeating the same story or question.

Each person will be affected in his or her own unique way, and also dependent on the type or cause of his or her dementia. It is important to avoid foretelling the future or embracing all the pessimistic possibilities you may hear or read of because such negative predictions may well result in a self-fulfilling prophecy.

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The fact that some brain cells die or that there has been a deterioration of brain cells resulting in the onset of dementia does not mean the path ahead has to be all downhill. Some research studies show that there is no correlation between the severity of brain damage and the extent to which a person is generally affected by the dementia process.

Research into the brain also shows that even though some brain cells may die, the brain has the capability to repair itself, creating new networks and pathways to link information stored in cells that are still functioning. There is much excitement in the scientific world about the possibility of nerve regrowth in the brains of people with dementia.

We know through experience that people with dementia have a fabulous ability to develop new strategies and behaviours to compensate for what they have lost. Positive responses to and interpretations of these changes, strategies and behaviours can be a matter of attitude, both in the person and those of their supportive partners or “carers”.

Often, after a dementia diagnosis, focus fixes only on the person’s symptoms and behaviour rather than on his or her needs. With this daunting diagnosis, it can seem that there is not much that can be done and it can be very hard to maintain a positive attitude. However, if we shift our focus and energy to the person’s strengths and remaining abilities, it will help us to keep a positive attitude and influence both the way we care and how the person we support will feel and respond to us.

The first step is to switch our thinking from – dementia as resulting from an irreversible, degenerative disease of the brain without a cure. (A very negative picture); to – dementia resulting from a disability of certain parts of the brain. We need to remember that the rest of the person is still alive, feeling, sensitive and responsive. There are many possibilities to work with to help the individual improve, blossom and grow. By focusing on all that the person can still do, we can help ensure meaningful, positive and fulfilling lives for those we support.

When we open up to possibilities instead of the forecast probabilities, a whole new dimension can develop in relationships between either you and the person who supports you or you and the person you support. ³

SYMPTOMS AND STAGES OF DEMENTIA

Dementia symptoms are often grouped in ‘stages’ – here we refer to 4 different stages. These stages should only serve as guides though, as each person responds differently to their particular symptoms, and stages can fluctuate and overlap. A person may show symptoms common to the early stage one minute and those common to the middle or late stage the next. These variations can be very much dependent on whether the person is experiencing an underlying physical condition or the lack of genuine respect and appreciation.

Though a person may appear muddled one particular day – or in the morning or afternoon – this doesn’t mean that the person is ‘locked’ at that point or has moved on to the next stage. It only means that this is where he or she is at that particular moment, and this may change, and the person may revert to being quite clear again.

The definitions we use here for the 4 stages are expressed from the point of view of social psychology; and are different from those of the medical model, which focuses mainly on the deterioration occurring in the brain. (Note: Research has shown that there is little correlation between the severity of brain damage and how it actually affects a person with dementia.)

We can all be forgetful at times. Who hasn’t gone to another room and arrived to wonder what they were doing there? Who hasn’t forgotten what day it is momentarily, especially when on holidays? Who hasn’t misplaced their car keys on occasions? The difference for the person with dementia is that he or she may find the keys but not know what to do with them.

FIRST-STAGE

In the first stage, people with dementia begin to experience that something is not right – ‘The old memory is playing up.’ They may feel embarrassed or frightened when they recognize changes in their memory or thinking. Family and friends begin to question and comment on the changes and forgetfulness. The person is likely to fight to keep up the façade of ‘normality’ and being in control.

They might do things, such as making up a little story to fill the memory gap of someone or something they can’t remember. Professionals label this gap filling as ‘confabulation’. However, this ‘story’ telling or gap filling does not mean that the person is telling a lie. It is actually a creative, self-defense mechanism that helps the person to keep up the façade. It will help supportive partners and ‘carers’ to understand if they can imagine it in this way too.

The person may express anger or annoyance to direct questions requiring memory or thinking skills. A seemingly simple question, such as: ‘Where were you born?’ may elicit a snappy, ‘That’s none of your business!’

Also, the person might blame others for his or her memory lapses.

Lydia cannot find her glasses. She asks her husband, Eric, ‘Have you seen my glasses?’ Eric recalls seeing them earlier in the bedroom, and says, ‘Have a look on the bedside table. I think you put them there.’ Lydia is not going to admit that she might have put the glasses there herself and forgotten; so she says, ‘Well, you must have put them there, because I didn’t.’

This type of response is easy to take as an accusation, but it is not. It is simply the person fighting to hold on to a small piece of control and to keep up the façade.

Sometimes the person in this first stage can drive family and friends wild wanting to check and recheck everything. Paul may ask, ‘Is it today that my son is coming?’ ‘What is the time?’ ‘Is today Monday?’ He checks again and again, until patience frays and frustration builds. It is important to remember that Paul is not doing this to annoy you; he is simply trying to reassure himself that he is in control.

People in this early stage seem to use every opportunity to exercise the control they feel they are losing.

When Mary says, ‘Mum, we aregoing out at 3 o’clock,’ and they have not left by 10 past 3, Mum may pull her up. ‘You said we were leaving at 3, and it’s 10 past 3!’

Mum is not trying to challenge Mary; she is simply trying to show that she remembers that they had a different arrangement.

In this first stage, people with dementia generally use much the same language as most people do. They might forget a word, a phrase or a memory and then create a little story to fill the memory gap. Sometimes they may also appear vague in the way they communicate.

Instead of Stan saying, ‘Please give me the cup,’ he forgets the word cup and (while pointing at it) might say, ‘Please give me that one.’

He might use vague phrases such as, ‘Something has happened’, or, ‘Something is not right.’

These are just two examples of the wonderful way people with dementia compensate for missing memories.

Or they may try to get us to create multiple-choice questions so they only have to answer one of them, and, in that way, we jog their memory too. For example you might ask Stan, ‘Where have you been?’ his response might be, ‘Oh, you know where.’

Note: It is far easier for people with dementia to recognise situations that are described to them rather than to remember something out-of-the-blue.

SECOND-STAGE

In the second stage, people with dementia are far more relaxed and inclined to give in and let go. They may start to withdraw and appear to become preoccupied with the past, thinking back to happy times, restoring old memories and sometimes living in that time and reality. Their way of communicating may change too. Sentence construction may not be as clear. They might start a sentence, and it makes perfect sense; but then it becomes muddled in the middle and ends as ‘gobbledegook’, which is hard to understand.

If they can’t remember a word, they might create one. Often the words will be familiar, only now put together in an innovative way creating a poetic new word or phrase. Here is a great personal example of how this can occur.

One day we were out driving. Suddenly, Mum pointed out of the window and said, ‘Look at that beautiful water nest.’ I looked across at the dam in the paddock and thought, ‘What is she talking about?’ Then I realised. Mum couldn’t remember the word for dam, so. Instead, she’d said, ‘water nest.’ A far more beautiful word picture than dam!

Another time, she said, ‘I can’t find my rain stick’. I did have to wonder for a moment about this rain stick? Of course, Mum meant her umbrella.

Once we work out the intended meaning, it can seem so obvious.

People who have dementia develop their own wonderful language. Each person is unique and so will develop an individual style of language that those closest to them will learn to understand. A close family member may even get to a point where he or she doesn’t even think of it as different.

In the second stage, the person may start to mix up relationships and generations, such as Emily believes her son to be her deceased husband, or Ray believing his niece is his sister.

The person may start to address you by a different name. Just because you are addressed in this way for a short time does not mean it will last forever. It may only be that the person is preoccupied, for the moment, in thinking about Mum or Dad. So, when you appear, you may temporarily become Mum or Dad.

In this stage, the person may still be able to do many things but might become sidetracked when starting on something new.

Evelyn pulls out a drawer to put something away. Once the drawer is open, she is inspired by what she sees inside and forgets what she came to do.

Instead, she begins to empty the contents.

John may begin to set the table using the correct movements; but once he spreads out the tablecloth, he forgets what he is doing. Suddenly, re-inspired, he begins to fold the cloth up again and puts it away.

Some of these actions can be frustrating, but they are easier to understand when we know that the person is not deliberately trying to frustrate or irritate; it is simply that he or she sets out to do the one thing, and then gets distracted

THIRD-STAGE

In the third stage, people with dementia start to withdraw even further into the past and become so preoccupied with their memories that they ‘live’ almost entirely in that time and reality.

They may also start to wander. When this happens, it is important to know that there is usually a valid reason. Either the person is looking for something or someone, or is trying to prevent boredom.

The person may also start expressing needs, wants and feelings increasingly through body language – using gestures and actions. For example Some may sit picking minute fluff-balls off clothing, wringing their hands, or appear to be kneading dough or mending clothes. These are ways of going back into the past and recreating a time when they felt needed, useful and special. Often these positive experiences are missing for them in this reality. These movements do have a purpose, even if they might seem strange to us.

Language, at this stage, may consist mainly of one-syllable words, such as ‘Yes’ and ‘No’, interspersed with only a keyword. This keyword might be a noun or a verb, but is always something that has a particular meaning and that we can take note of to help us understand what is being talked about.

We can maintain communication with people who have dementia in all stages. The person may become incontinent in the third stage, but, remember, this may not necessarily happen.

FOURTH-STAGE

In the fourth stage, people with dementia may completely shut out the outside world. They might sit in a chair or lie in bed staring straight into thin air, or they might have their eyes closed. They may not respond when someone walks into the room or speaks to them.

Today, we know that the person at this stage still hears and experiences through touch, and it is extremely important that we continue to talk with them and still make physical contact

APPLY PERSON-CENTRED CARE APPROACHES TO ALL INTERACTIONS WITH THE PERSON LIVING WITH DEMENTIA

WHAT IS PERSON-CENTRED PRACTICE?

Person-centred practice is treatment and care provided by health services that places the person at the centre of their own care and considers the needs of the older person's carers. It is also known as:

Person-centred care

Patient-centred care Client-centred care

Person-centred practice is treating patients as they want to be treated.

WHY IS PERSON-CENTRED PRACTICE IMPORTANT?

It makes sense that:

When you get to know the patient well, you can provide care that is more specific to their needs and, therefore, provide better care

By promoting and facilitating greater patient responsibility, patients are more likely to engage in treatment decisions, feel supported to make behavioural changes and feel empowered to self-manage

A recent literature review found that person-centred practice can make a positive difference to health outcomes and patient satisfaction and can improve health care workers' sense of professional worth

What are the principles of person-centred practice?

Getting to know the patient as a person - Health care workers need to get to know the person beyond the diagnosis and build relationships with patients and carers.

Sharing of power and responsibility - Respecting preferences and treating patients as partners in setting goals, planning care and making decisions about care, treatment or outcomes.

Accessibility and flexibility - Meeting patients' individual needs by being sensitive to values, preferences and expressed needs. Giving patients choices by providing timely, complete and accurate information they can understand, so they can make choices about their care.

Coordination and integration - Working as a team to minimise duplication and provide each patient with a key contact at the health service. Teamwork allows service providers and systems working behind the scenes, to maximise patient outcomes and provide positive experiences.

Environments - Physical and organisational or cultural environments are important, enabling staff to be person centred in the way they work.

LANGUAGE AND PERSON CENTRED CARE

Language and terminology are very important to the concept of person-centred care. Addressing people by their preferred name and avoiding pet names or generic terms like "love" or "dear" is a dignity promoting strategy. It recognises the individual and reinforces his or her sense of self-worth and personhood and conveys respect. The use of inappropriate language reduces resident choice and sense of personhood. It has been linked to an increase in restiveness to care shown by residents with dementia.

Alzheimer’s Australia has produced a preferred list of dementia friendly words and phrases. Using dementia friendly language promotes the dignity or self-esteem of people living with dementia. The term person-centred may infer a greater recognition of care recipient autonomy than client centred or patient (resident) centred care. These terms imply a focus on illness or dependency and power imbalance between care provider and care recipient.

INTERPRET INDIVIDUALISED PLAN AND FAMILIARISE SELF WITH THE SPECIFIC NEEDS AND WANTS OF THE PERSON LIVING WITH DEMENTIA AND IDENTIFY AND ADDRESS PERSON’S NEEDS FOR A STABLE AND FAMILIAR ENVIRONMENT

Key facts

Dementia is a syndrome in which there is deterioration in memory, thinking, behaviour and the ability to perform everyday activities

Although dementia mainly affects older people, it is not a normal part of ageing

Worldwide, 35.6 million people have dementia, and there are 7.7 million new cases every year

Alzheimer's disease is the most common cause of dementia and may contribute to 60–70% of cases

Dementia is one of the major causes of disability and dependency among older people worldwide

Dementia has physical, psychological, social and economic impact on caregivers, families and society

TREATMENT AND CARE

There is no treatment currently available to cure dementia or to alter its progressive course. Numerous new treatments are being investigated in various stages of clinical trials.

Much can be, however, offered to support and improve the lives of people with dementia and their caregivers and families. The principal goals for dementia care are:

Early diagnosis

Optimizing physical health, cognition, activity and well-being

Identifying and treating accompanying physical illness

Detecting and treating behavioural and psychological symptoms

Providing information and long-term support to caregivers

RISK FACTORS AND PREVENTION

Research identifying modifiable risk factors of dementia is scarce. Prevention focuses on targets suggested by available evidence, which include countering risk factors for vascular diseases, such as diabetes, midlife hypertension, midlife obesity, smoking and physical inactivity.

SOCIAL AND ECONOMIC IMPACTS

Dementia has significant social and economic implications in terms of direct medical costs, direct social costs and the costs of informal care. In 2010, the total global societal costs of dementia were estimated to be US$ 604 billion. This corresponds to 1.0% of the worldwide gross domestic product (GDP), or 0.6% if only direct costs are considered. The total cost as a proportion of GDP varied from 0.24% in low-income countries to 1.24% in high-income countries.

LIVING WITH DEMENTIA

Everyone has a relationship with their environment. Each day we move about in space and time, relating to people, objects and places of meaning. Much of how we think about ourselves is reflected in our environment. Environments of our daily lives give us resources for presenting ourselves to the world around us.

It is the same for people with dementia. Even if their perception of time and space has changed, they live in a world where relationships, objects and situations matter. People with dementia may not be able to speak about the meaning environments have, but a sense of meaning and importance remains in their lives.

WHAT IS THE EXPERIENCE OF DEMENTIA?

Dementia describes different characteristics around changes in the brain or cognitive capability. Most obvious is impairment of memory. Of many usually progressive and permanent dementias, Alzheimer’s disease is the most common.

For people with dementia, their physical and social environments become more and more difficult with changes in cognitive capability. Dementia changes very much how people interpret what they see, hear, taste, feel and smell.

Anyone trying to create a dementia-friendly environment must first ask how people living with dementia experience their world.

It impairs our memories:

We can forget where we put things

We can forget what we have been doing even recently

We can forget people’s names, even people close to us

We can forget we have done something and so repeat doing or saying things Our strongest memories may be for events from the past

It impairs our reasoning:

We can find abstract notions like money and value confusing

We can find the results of actions hard to predict

We can misunderstand the pattern on the floor

It impairs our ability to learn:

We can find new places disorienting

We can have difficulty getting used to unfamiliar objects or routines We forget where basic things like the toilet are

It raises our levels of stress:

We can find large groups difficult

We can become anxious in situations we coped well in before

Too much noise makes us confused

It makes us very sensitive to built and social environments:

We can be very sensitive to the emotional atmosphere

We benefit from calmness

We need good lighting to give us as much information as possible about our surroundings

It makes us more and more dependent on all our senses:

We may need to be able to smell, feel and see things

We can get agitated if we get too hot

We can get confused if there is not enough light

There are five major needs of people with dementia, and they shape person-centred care.

Comfort - People living with dementia may have a sense of loss, causing anxiety and insecurity. They need an environment of comfort and empowerment.

Attachment - The need for attachment is strong in each of us, more than ever when we feel like a stranger in someone else’s environment. People with dementia need to feel a sense of belonging.

Inclusion - People with dementia can find it hard to be included in situations where others do not have the same impairment. Individualised care and physical settings help people feel they are part of a group.

Occupation - Being occupied means being involved in everyday life. Carers and designers need to create conditions that support social involvement, drawing on people’s experiences, strengths and abilities.

Identity - A person with dementia is unique. A person’s life story should be built into all interactions in the care setting.

The medical model of dementia is of mental decline. This approach makes it hard to focus on maximising a person’s abilities and improving their quality of life. Putting physical problems and emotional states down to brain damage, the medical model overlooks the social world of people with dementia. Shifting from dementia as a physical condition to people’s experience of dementia gives options to create environments for actively joining in everyday life, rather than an environment of passive care.

RECOGNISE SIGNS CONSISTENT WITH FINANCIAL, PHYSICAL OR EMOTIONAL ABUSE OR NEGLECT OF THE PERSON AND REPORT TO AN APPROPRIATE PERSON

It is important to remember that someone suffering dementia can have changes in personality and behaviour, and this may impact on those that are caring for them whether they are family, a friend or paid/volunteer carers.

It is very important that those working with people who suffer from dementia should recognise witnessed signs consistent with financial, physical or emotional abuse or neglect of the client and report to an appropriate person.

Types of abuse:

Observed abuse - Staff members in accommodation services, or any other services used by clients, are most likely to observe incidents of abuse towards clients.

Reported abuse - Abuse may be reported directly to staff by the victim or by another client who has observed the incident or multiple incidents. A disability worker or any other person, may observe the abuse of a client or clients, and report it to a responsible person.

Suspected abuse - A disability worker or any other person may detect unusual behaviours or events that could be indicators of client abuse. Another carer, a family member or a guardian who knows a client well and has reason to suspect that the client is being abused should inform a responsible person among the disability workers. Any other person who is not necessarily familiar with a client but suspects that there is an abusive situation should also report any suspicion of abuse to a manager who knows or is involved in the client’s circle of support

The following definitions of abuse are taken from known sources. Abuse is not limited to the types defined below and employees are required to consider that any inappropriate behaviour towards a client may be abuse.

DOMESTIC VIOLENCE

Violence, abuse and intimidation perpetrated by one person against another in a personal, intimate relationship. It is a partnership violence that includes violence perpetrated when couples are separated or divorced. Domestic violence occurs between two people where one has power over the other causing fear, physical and/or psychological harm.

Note: This type of abuse can occur where people are living in the same house, between a client and a family member or friend, or between two clients.

NEGLECT

Neglect is a failure to provide the basic physical and emotional necessities of life. It can be willful denial of medication, dental or medical care, therapeutic devices or other physical assistance to a person who requires it because of age, health or disability. It can also be a failure to provide adequate shelter, clothing, food, protection and supervision, or to place persons at undue risk through unsafe environments or practices and thereby exposing that person to risk of physical, mental or emotional harm. Neglect includes the failure to provide the nurturance or stimulation needed for the social, intellectual and emotional growth or well-being of an adult or child.

Note: Neglect may occur when the primary carer of a client does not provide the essential elements for life described above, or when any person or organisation responsible for providing care or services to a client fails to meet this obligation.

Examples - neglect

Refusing to provide service users with food because they have not done what they were asked to do

Hurrying or rushing assistance with eating or drinking to fit in with staff timetables rather than clients’ needs

Withdrawal or denial of privileges planned outings or personal items that are not designated and planned behaviour management strategies

Depriving clients of their right to express their cultural identity, their sexuality or other desires

Failure to ensure adequate food, health care support, clothing, medical aid or culturally relevant contexts and supports

Not using a communication device to enable expression of needs or other communication

PHYSICAL ABUSE

Physical abuse is assault, non-accidental injury or physical harm to a person by any other person. It includes but is not limited to inflicting pain or any unpleasant sensation, causing harm or injuries by excessive discipline, beating or shaking, bruising, electric shock, lacerations or welts, burns, fractures or dislocation, female genital mutilation and attempted suffocation or strangulation.

Note: This type of abuse may be perpetrated by people known to clients or by strangers, and can occur at any time or place.

Examples – physical abuse

Hitting, smacking, biting, kicking, pulling limbs, hair or ears

Bending back fingers, bending an arm up behind the back

Dragging, carrying or pushing people who do not want to be moved unless

involuntary relocation is part of a behaviour management plan

Physical restraint

Threat of violence

RESTRAINTS AND RESTRICTED PRACTICES

Restraining or isolating an adult for reasons other than medical necessity or in the absence of a less restrictive alternative to prevent self-harm. This may include the use of chemical or physical means or the denial of basic human rights or choices such as religious freedom, freedom of association, access to property or resources or freedom of movement. These practices are not considered to be abuse if they are applied under a restricted practice authorisation.

Examples – restraints and restricted practices

The use of social isolation (ignoring a client) when it is not a designated behaviour management strategy

Putting a client into a room with the door locked

Locking a client in a room all night

Using other clients to provide physical control over a client

Excessive chemical restraint - use of medication without proper authorisation or consent

Forcing clients to eat food they do not want to eat

SEXUAL ASSAULT

Any sexual contact between an adult and child 16 years of age and younger, or any sexual activity with an adult who lacks the capacity to give or withhold consent, or is threatened, coerced or forced to engage in sexual behaviour. It includes non-consensual sexual contact, language or exploitative behaviour and can take the form of rape, indecent assault, sexual harassment or sexual interference in any form.

Note: This type of abuse may be instigated by any person, against any other person of any age and of either gender.

Examples – sexual assault

Anal or vaginal intercourse without consent

Fingers or object inserted into vagina or anus without consent

Cunnilingus or fellatio without consent

Masturbation of another person without consent

Non-consensual touching of breasts or genitals

Indecent exposure

Masturbation by a person in the presence of the victim

Voyeurism

Displaying pornographic photography or literature

Sexual harassment, including lewd or suggestive comments, teasing or insults with sexual connotations

EMOTIONAL ABUSE

This can include verbal assaults, threats of maltreatment, harassment, humiliation or intimidation, or failure to interact with a person or to acknowledge that person’s existence. This may also include denying cultural or religious needs and preferences.

Note: Although any person may initiate emotional abuse towards a client it is likely to come from persons who associate with clients regularly. The sources could be primary carers, family, friends, other clients or other service providers.

Examples – psychological or emotional abuse

Humiliating a client for losing control of their bladder or bowel or about other private matters

Treating clients in ways that deny them their dignity

Preventing clients from expressing themselves out of fear of retaliation

Discouraging personalisation of rooms or clothing

Limiting social freedom available to clients

Denying cultural needs, such as serving pork to Jewish or Muslim clients

Shouting orders to clients

Using humiliating names when speaking to a client

FINANCIAL ABUSE

Is the improper use of another person’s assets or the use or withholding of another person’s resources?

Note: Possible sources of financial abuse are carers, families or guardians who act formally or informally as financial managers and have access to or responsibility for clients’ finances and property.

Examples – financial abuse

Denying clients’ access to or control over their money when they have a demonstrated capacity to manage their own finances

Denying a client access to information about their personal finances

Taking a client’s money or other property without their consent (which is likely also to constitute a criminal offence)

Forced changes to wills or other legal documents

Using a client’s belongings for personal use

SYSTEMIC ABUSE

Failure to recognise, provide or attempt to provide adequate or appropriate services, including services that are appropriate to that person’s age, gender, culture, needs or preferences.

Note: Service providers and carers are the likely sources of systemic abuse.

Examples – systemic abuse

Relevant policies and procedures are not implemented

Clients are denied the option to make decisions affecting their lives Healthcare and lifestyle plans are not implemented

RECOGNISING SIGNS THAT MAY BE INDICATORS OF ABUSE

Staff and management play an important role in protecting clients from further harm by recognising the indicators of abuse and responding to them. The presence of one or more indicators does not mean that abuse has occurred but does require staff to be vigilant on the client’s behalf.

Indicators of abuse are not always obvious, and while clients or others may suspect that abuse has occurred there might not be any evidence to confirm the suspicion. Indicators are variable, and people who are familiar with clients and have a strong positive relationship with them are best placed to recognise behavioural changes that may suggest a client is being abused.

Indicators of abuse including assault and neglect

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TOPIC 2 – USE APPROPRIATE COMMUNICATION STRATEGIES

USE VERBAL AND NON-VERBAL COMMUNICATION STRATEGIES TO MAXIMISE ENGAGEMENT OF THE PERSON WITH DEMENTIA

Communicating with someone who can no longer speak in words or sentences can sometimes seem like a tough task.

THE GOOD NEWS

People with dementia still do communicate, even if they can no longer use words or sentences. Today we know that most people with dementia retain the ability to communicate, at least in one-syllable words, such as Yes or No.

The only exceptions to this rule are people in the final stage of dementia or who have suffered a stroke or similar condition that may have affected their ‘speech circuitry’.

A Yes or No answer can be given in 3 different ways by:

Saying the words out loud

Shaking or nodding the head to indicate a response

Using facial expressions e.g. looking up and making eye contact; smiling or looking down for a Yes, or: looking straight into space or giving no reaction at all for a No

Research has shown that words are not our only means of communication. We use three components when communicating a message:

Words – which make up 7%

Tone of voice – which makes up 38% and

Body language – which makes up 55%

This means that 93% of our communication is non-verbal, and it is in our tone of voice and body language that meaning is conveyed. We can say a word or sentence, but give it a completely opposite meaning through our tone of voice and the look on our face. The reality is that people with dementia who have ‘lost’ their speech (only 7% of their communication) still retain the ability to share all their emotions by communicating non-verbally in actions and sounds.

BE A GOOD LISTENER

The objective of communicating with someone who can’t put words or sentences together is to help the person make sense of what is going on inside his or her mind and to express it.

The first essential to being a good listener is to listen with your heart, to listen with feeling. Ask yourself:

What is the person attempting to communicate?

What is the need that is not fulfilled?

INTUITION

Use your intuition as a guide to help you guess what the person is attempting to communicate.

Intuition is our lightning fast ability to take in information and process it in relation to anything we have learned previously or experienced. It gives us our initial response to a question. To do this incredibly fast processing, our intuition makes use of both hemispheres of the brain.

Once we have guessed what the person is attempting to communicate, we need to acknowledge the need or feeling that is being expressed, and then check this ‘guessed’ need or feeling with the person.

Contrary to myths… people with dementia do know how they feel and what their needs are. They simply express them differently and it is our obligation to tune into their special way of sharing their needs and feelings.

THE EFFECTS OF DEMENTIA ON COMMUNICATION

People living with dementia may:

Be confused

Experience a sense of loss of purpose and identity

Feel uncomfortable exploring their diminished competences Be anxious about their condition and its possible progress

As a consequence, they may:

Have difficulty following rapid or complex speech

Attempt to convey meaning in ways that are discontinuous and lacking in logical structure, but may express underlying concerns metaphorically

Have difficulty encoding or decoding meaning

Be especially susceptible to ‘noise’, be it environmental, socio-cultural or situational

Find some behaviours unhelpful in others’ attempts to communicate – for example, a perceived patronizing tone or a too-rapid action accompanying an explanation

THE COMMUNICATIVE NEEDS OF PEOPLE LIVING WITH DEMENTIA

We believe that people with dementia can be:

Agentive, i.e. able to be in control of their own lives and circumstances as far as possible

Offered support in continuing to ‘own’ a clear idea of themselves as individuals, and of themselves in a particular socio-cultural context Helped to feel less anxious

Aided in their attempts to negotiate and maintain a sense of self and of personal and social identity

Assisted in their attempts to communicate effectively with others

Helped to retain and regain competences

Approached and treated in such a way that their dignity and freedom of choice are reinforced and supported

Dementia can profoundly affect a person’s ability to communicate effectively. People living with dementia are, nevertheless, individuals with communicative needs. Addressing these needs in a clear and principled manner, which fully acknowledges individual ‘personhood’, is a key element in any positive encounter between people.

Overall, a person-centred approach to communication between carers and those living with dementia should have the effect of initiating a virtuous circle of improving communication. With this, the recognition of a person’s individual agency by a carer both increases the individual’s sense of competence and improves the quality of social interaction for both parties

GAIN COOPERATION AND PROVIDE REASSURANCE AS APPROPRIATE BY USING REALITY ORIENTATION

It is important that to assist the client in orientating them to what is happening now and supporting them in recognition of their current surrounding and environment.

To gain their cooperation and help provide reassurance to those clients who are suffering dementia.

It is important that you ensure that you respect the client and that you use reminders such as:

Reminders of the day

Reminders of the time

Reminders of relationships

Reminders of occasions

It is always very important that you use good communication strategies when dealing with clients you should try and avoid any conflict situations, when communicating with them always use reassuring words, phrases and body language.

UNREALISTIC BELIEF IN DEMENTIA CLIENTS

People with dementia sometimes experience a range of conditions in which they do not experience things as they really are. Although hallucinations and delusions are imaginary, they seem very real to the person experiencing them and can cause extreme anxiety, and even panic.

WHAT ARE THEY?

Hallucinations are sensory experiences that cannot be verified by anyone other than the person experiencing them. Such experiences may include any of the senses, but the most common are visual and auditory hallucinations – the person sees or hears something that is not there. Voices may be heard, people may be seen who are not present, or strange and frightening noises may be heard.

Paranoia is characterised by unrealistic beliefs, usually of either persecution or grandeur. People with dementia may believe that others are out to get them, or that they have superhuman powers. People with dementia sometimes become quite suspicious, accusing others of stealing things and hoarding or hiding things because they believe someone is trying to take their possessions. One common accusation is that the person’s partner is unfaithful. Such ideas may lead the person with dementia to become fearful and resistant to attempts to care for them.

Delusions are ideas that are not based on reality, but which are thought to be true by the person with dementia. Their content can often be centred on people stealing money or other possessions, or they may have fixed ideas about people intending to harm them.

Misidentification - People with dementia can misidentify other people or themselves. Sometimes they do not recognise their partner as being the person they have known. At other times, they may think their reflection in the mirror is another person and be frightened, or think that voices on the radio or television are from people in the room with them.

VALIDATE THE PERSONS ‘S BELIEF

Having a person who is suffering from dementia and having unrealistic beliefs can be quite disconcerting and very confusing for those that are dealing with it on a day to day basis. Not knowing or being embarrassed by the client’s statement or beliefs is a common occurrence. It is very important that you validate the person’s belief, delusion, misidentification or hallucination.

It is extremely important that you do not:

Criticise

Correct

Embarrass

It is more important that you validate their beliefs.

These beliefs can worsen in darkness and especially at night. Ways to reduce this is by using a good night light, which will illuminate their environment and thereby helping to settle and reduce the hallucinations.

Some medications will also trigger a hallucination if you recognise this factor it is extremely important that you observe the client, monitor them and report it to your supervisor immediately.

Factors which may cause behaviours to change:

Sensory defects such as poor eyesight or poor hearing

Side effects of some medications

Psychiatric illness

Unfamiliar environments

Inadequate lighting making visual clues less clear

Physical conditions such as infections, fever, pain, constipation, anaemia, respiratory disease, malnutrition, dehydration

Unfamiliar caregivers

Disruption of familiar routines

Misinterpretation of environmental cues often a result of forgetting to use a hearing aid or glasses

Sensory overload because of too many things going on at once

TREATMENT

Medication will sometimes help to control delusions or hallucinations in people with dementia and occasionally will help to control misidentification syndromes. However, many of the antipsychotic medications used to treat these disorders have side effects such as stiffness, shakiness or drowsiness. Newer antipsychotic medications have fewer side effects but can still cause drowsiness. Sometimes, where delusions and hallucinations are causing a major problem, a trial of a drug treatment may be appropriate.

Strategies:

Do not argue. It is better to acknowledge that the person may be frightened by the delusions and hallucinations

Do not scold the person for losing objects or hiding things

Investigate suspicions to check their accuracy

Attempt to distract the person if possible

Try to respond to the underlying feelings which may be at the bottom of the statements which the person makes

Distractions which may help include music, exercise, activities, conversations with friends and looking at old photos

Physical contact may be reassuring, but be sure that the person is willing to accept this

Try to maintain a familiar environment. If the person has to move, take some familiar things from the previous residence

Increase lighting in the home and use night lights

Try to maintain consistent caregivers and a consistent routine

Try to learn the person’s common hiding places

Keeping a diary may help to establish whether these behaviours occur at particular times of the day or with particular people. Identifying such causes may help you to be able to make changes to overcome the difficulties

If possible, keep a spare set of things that are often mislaid such as keys, purse or glasses

Some hallucinations and false ideas can be ignored if they are harmless and do not cause the person to become agitated

Do not take the accusations personally and be aware that the person is not able to control this behaviour

SUPPORT FOR FAMILIES AND CARERS

Dealing with these behaviours day in and day out is not easy. It is essential that you seek support for yourself from an understanding family member, a friend, a professional or a support group.

USE A RANGE OF VALIDATION STRATEGIES TO RELIEVE DISTRESS AND AGITATION IN THE PERSON

WHAT IS AGITATED BEHAVIOUR?

Changes in the behaviour of people with dementia are very common. Sometimes they can become upset and display behaviours such as pacing and fiddling. Constant vocalisations such as constantly talking, repeating words and phrases, crying or cursing and screaming are also types of agitated behaviours. Repetitive questioning, such as being asked continually what day it is, or when dinner will be ready, is another type.

All of these behaviours can be distressing and a constant annoyance for families and carers. Remember they can also be a sign of some distress for the person with dementia, so it is important to be able to understand why these behaviours occur and ways to manage them.

WHAT CAUSES THESE BEHAVIOURS?

There are many reasons why behaviours change. Every person with dementia is an individual who will react to circumstances in their own way. Sometimes the behaviour may be related to changes taking place in the brain.

In other instances, there may be events or factors in the environment triggering the behaviour. In some situations a task, such as taking a bath, maybe too complex. Or the person may not be feeling well.

UNDERSTANDING THE BEHAVIOURS

It is important to try to understand why the person with dementia is behaving in a particular way. If family members and carers can determine what may be triggering the behaviour, it may be easier to figure out ways to prevent the behaviour happening again.

FREQUENT CAUSES OF AGITATED BEHAVIOURS

Health factors

Fatigue

Disruption of sleep patterns causing sleep deprivation

Physical discomforts such as pain, fever, illness or constipation

Loss of control over behaviours due to the physical changes in the brain

Adverse side effects of medication

Impaired vision or hearing causing the person to misinterpret sight and sounds

Hallucinations

Defensive behaviours - A person with dementia may feel humiliated because they are forced to accept help with intimate functions such as bathing, toileting and dressing. They may feel their independence and privacy are being threatened.

Failure - Because they are no longer able to cope with everyday demands, a person with dementia may feel pressured.

Misunderstanding - No longer understanding what is going on may lead to bewilderment or the person may become distressed by an awareness of their declining abilities.

Fear - They may become frightened because they no longer recognise certain places or people. They may be recalling an earlier life experience that is frightening or uncomfortable to remember.

Need for some attention - A person with dementia may be trying to let someone know that they are bored, distressed, have an excess of energy or feel ill.

What to try:

A medical examination will help identify any physical problems or unwanted side effects of medications

Agitation can be a symptom of depression. If you suspect that depression may be a problem for the person with dementia, discuss it with the doctor. It is important to investigate and treat depression where it is suspected

Be aware of the warning signs of agitated behaviour and try strategies to stop its development

Try to reduce the demands made on the person whilst still enabling them to make worthwhile contributions

Ensure that there is an unrushed and consistent routine

If possible, address the underlying feeling

Spend time explaining what is happening, step by step, in simple sentences.

Even if they can’t understand your words your calm tone will be reassuring

Avoid confrontation. Either distract their attention or suggest an alternative activity

Make sure the person gets enough exercise and participates in meaningful activities

Make sure they are comfortable

Preventive measures may not always work. Do not blame yourself if the person still becomes agitated. Concentrate instead on handling it as calmly and effectively as possible.

When agitated behaviours occur:

Stay calm. Speak in a calm, reassuring voice

A simple activity such as having a cup of tea or looking at a magazine together may help. Distraction and avoidance are often the most useful approaches

Use what works for you. Answering repetitive questions works for some. For others, ignoring the question helps. It can be useful to look behind the questions to see whether the person needs some reassurance about something they are unable to express verbally.

Agitated behaviours can be very difficult for families and carers. The behaviours are symptoms of dementia and are not meant to deliberately upset you. Remember to look after yourself and take regular breaks.

When dealing with the client who is distressed and showing signs of agitation, it is important that you show them empathy, acceptance of the person's reality, acknowledgment of their distress, allow them to express their distress.

It is important that you provide both verbal and/or physical reassurance to the client, and that you use reminiscences frequently to connect with clients. Memory cuing can be done by using words and visual cues past and recent memories.

This can be done with videos, reminder notes, and colour coding or numbering things in order of importance.

TOPIC 3 – PROVIDE ACTIVITIES FOR MAINTENANCE OF DIGNITY, SKILLS AND HEALTH

ORGANISE ACTIVITIES WHICH AIM TO MAINTAIN INDEPENDENCE, USING FAMILIAR ROUTINES AND EXISTING SKILLS

“Not knowing where I am doesn’t mean I don’t know what I like!”

A positive, home-like environment for people with dementia can give personal enjoyment. For comfort and pleasure, a person first has to feel at home in a familiar, personalised environment. Many people with dementia, depending on the stage of impairment and personal likes, want a more active connection with their environment, and that benefits their health. It is important that any activity focuses on the comfort and safety of the client.

Regular physical activity can:

Lift a person’s mood

Help deal with negative feelings

Improve sleep

Reduce tension levels

Reduce feelings of stress or fatigue

Increase energy

CREATING OPPORTUNITIES FOR PERSONAL ENJOYMENT

Personal enjoyment can be promoted in the smallest social contact, for example, a oneto-one chat producing a smile or effort at communication. People’s capacity for enjoyment can expand by designing activities and the spaces where they occur to extend a person’s connection with the world around them.

Personal enjoyment is improved by an active sense of belonging through joining in daily life tasks and in planned daily life activities. Past practices in residential and respite facilities have often infantilised people with dementia, through inadequate stimulation, unsuitable activities, and poor design of indoor and outdoor spaces for dementiafriendly activities.

To improve people’s involvement, think about how and when to encourage them in different relevant experiences. For example, include:

Physical and social life experiences

Experiences to build on people’s existing strengths and past histories

Experiences reflecting different areas of life

Everyday life experiences around daily routines

Planned activities needing special spaces, equipment or events.

Common problems:

Lack of knowledge of a person: their likes, dislikes and wants

Lack of a home-like setting to support independence, mobility and joining in

Restricted options for interesting daily life events

Daily experiences that do not mesh with a person’s life experiences

ORGANISE ACTIVITIES THAT ARE APPROPRIATE TO THE INDIVIDUAL, REFLECTING THEIR CULTURAL LIKES AND DISLIKES, IN ORDER TO BRING BACK PLEASURABLE MEMORIES

DAILY LIVING AND PAST SOCIAL ROLES

Learn about and accept a person’s lifetime of experience. This lifetime is a person’s social and cultural history. Understanding a person’s life story, likes and interests are vital for their personal enjoyment.

Many everyday activities are linked to social roles helping define who we areand give confidence and enjoyment. Dementia has a major impact on people’s ability to hold on to roles of meaning and purpose. Well-planned daily life experiences can tap into that past and extend existing skills.

It has been said ‘activities comprise the stuff of everyday life’. Successful activities support and build on everyday life. It is not having something to do that is important; it is having something meaningful or purposeful for the person involved. It is often thought people with dementia are no longer ‘themselves’, but their past histories continue to shape who they are and what they like.

CREATING A LIFE STORY

Life stories help staff understand a person with dementia as a person with unique needs and interests. Gathering information for a life story can help staff shape enjoyable daily experiences in line with a person’s past roles and interests. Recording a person’s life story and gaining a social understanding is basic to dementia-friendly care. A life story should have information about a person’s:

Previous jobs

Domestic interests

Recreational pastimes

Religious views

Family members

Family history

Homes and neighbourhoods

Nationality and countries of residence

Build a picture of the whole person. Talks with family members, friends and past neighbours, where possible, help give a background to how a person lived before residential or respite care. While this information should be treated as confidential, it is important to share it with staff, so it informs everyday interactions and planned daily living.

MEANINGFUL AND PURPOSEFUL DAILY LIVING

Activities should draw on past roles and experiences, and include the stuff of everyday life.

Day planning is part of healthcare design. Group and individually planned events have real benefits, but people with dementia often find it hard to keep joining in. Design daily life routines and activities around abilities of people with dementia.

A meaningful experience must have a purpose, be voluntary, feel good and give a person with dementia a fair chance of success

Purpose: For direction and ongoing interest, daily life needs to have simple aims, with practical, useful tasks rather than simply diversional ones.

Voluntary participation: People must want to join in. For example, some people have never enjoyed group activities and should not be forced to join in if they do not want to. Some may quickly take part, and others want to be formally invited to join in.

Enjoyment: To draw on deep memories and create familiarity, people’s preferences and past roles in life should inform daily life experiences.

Success: Daily living should be failure-free. People should not feel forced to act in ways they find uncomfortable or be reminded of limitations caused by their cognitive impairment.

Familiar life experiences drawing on the past are deep in long-term memory. This is the secret to designing meaningful and purposeful living.

INTIMACY AND SEXUAL ISSUES

This section discusses intimacy and sexual issues for people with dementia, their families and carers. It describes the importance of these issues in their lives and ways to deal with some of the problems that may arise.

INTIMACY AND SEXUALITY

The need for closeness is a very important and natural part of our lives. Intimacy is the giving and receiving of love and affection. It involves caring touch, empathic understanding, comfort in times of need and a feeling of safety in relationships.

Sexuality is the feeling of sexual desire, which is expressed through sexual activity. Like intimacy, sexuality is a natural expression of human need. However, for many people sexuality goes beyond the narrow concept of sexual intercourse and is bound up with many of the broader expressions of intimacy such as physical closeness, kissing and hugging.

HOW ARE INTIMACY AND SEXUALITY AFFECTED BY DEMENTIA?

People with dementia continue to need loving, safe relationships and caring touch. However, they will vary in their individual ways of giving and receiving affection, and the ways in which dementia affects that capacity. As a result of the disease, some people with dementia may become demanding and insensitive to the needs of others, and less able to provide caring support for their family and friends. They may also experience changes in the expression of their sexuality. Some people continue to desire sexual contact while others may lose interest in sexual activity. Others may display inappropriate sexual behaviours.

Partners may experience a range of feelings about continuing a sexual relationship with someone who has dementia. These may include feelings of rejection, distaste and guilt.

CHANGED SEXUAL BEHAVIOURS

It is important to remember that any strange or uncharacteristic behaviour is part of the illness and not directed in a personal way. A person with dementia may no longer know what to do with sexual desire or when or where to appropriately exercise the desire.

INCREASED SEXUAL DEMANDS

Some partners find that a person’s desire for sexual activity increases which may result in unreasonable and exhausting demands, often at odd times or in inappropriate places. Occasionally aggression may be shown if needs are not met. You may have to stay safely out of the way until there is a mood change. Some partners complain of feeling like an object. Once the person with dementia has had sex, they may forget immediately what has occurred.

DIMINISHING SEXUAL INTEREST

Many people with dementia lose interest in a physical relationship and may become very withdrawn. They may accept physical contact from others, but not initiate affection. Partners can feel hurt and bewildered by the loss of interest.

LOSS OF INHIBITIONS

People with dementia sometimes lose inhibitions and make advances to others or undress or fondle themselves in public. Sexual advances are sometimes made because the person with dementia mistakes another for their partner. Sometimes something that appears sexual, such as a woman lifting her skirt, may be an indication of something else, such as the need to go to the toilet.

MANAGING INAPPROPRIATE SEXUAL BEHAVIOURS

What to try:

Consider all the possible reasons for the inappropriate behaviours. This could include needing to go to the toilet, discomfort or boredom

Gently discourage inappropriate behaviours

Try to remain focused on the person, not the behaviour

Aim to distract the person if possible or redirect them to another activity

Find ways to include different forms of touch in the everyday routine so that the person gets some physical contact. Massage, holding hands and embracing are ways of continuing to provide loving touch.

Remember:

Like all the challenges faced by families and carers of people with dementia, discussing this with an understanding person can help. Support and affection from friends and family can help you cope with the situation. Talking about problems in a support group can help. Knowing that others have been through a similar experience may assist you to feel that you are not on your own.

INCONTINENCE

What is incontinence?

Incontinence is the loss of control of the bladder and/or bowel function. Our brains send messages to our bladder and bowel telling them when it is necessary to empty them. Being in control of these functions depends upon awareness of bodily sensations such as the feeling of having a full bladder, and the memory of how, when and where to respond. When there is a decline of intellect and memory as a result of dementia, incontinence may occur.

WHERE TO BEGIN

People with dementia, just like other adults, are susceptible to other causes of incontinence, such as infection, constipation, hormonal changes and prostate enlargement.

Many of these other conditions are treatable, so the first step is always to consult the doctor to obtain a full medical assessment and find out why the incontinence is occurring. Consulting with a continence nurse may also be helpful.

CHANGES IN A PERSON’S ABILITY

The changes in a person’s brain caused by dementia can interfere with their ability to:

Recognise the need to go to the toilet

Be able to wait until it is appropriate to go to the toilet

Find the toilet

Recognise the toilet

Use the toilet properly

DRESSING

Getting dressed can be a very complex and overwhelming task because there are so many steps involved. Helping a person with dementia to get dressed can be extremely time consuming and emotionally exhausting, especially if the person is not cooperating. Each person with dementia will react in an individual way and therefore an approach is needed which works best for both you and the person with dementia.

There are many reasons why a person with dementia might have problems dressing:

PHYSICAL OR MEDICAL CAUSES

Depression or a physical illness can cause a loss of interest in personal hygiene. Changes may have occurred in gross motor skills, creating problems with balance or walking. The changes may be with fine motor skills, causing problems fastening buttons or closing a zipper. The person with dementia may have impaired vision. The side effects of some drugs can cause dizziness or stiff joints.

What to try:

Organise for the person with dementia to have:

o A thorough medical examination to discover any possible causes or medication reactions contributing to problems with dressing

o Their vision or glasses checked

o An evaluation for depression, particularly if the person is frequently unwilling to get up or get dressed in the morning

FORGETTING HOW TO DRESS

Some people with dementia can’t remember whether they are getting dressed or undressed. In addition, they may forget to change their clothes, put them on in the wrong order or put on many layers of clothes. They may realise they have an item of clothing but have no idea which part of the body it goes on.

What to try:

Careful prompting or reminders may help the person get dressed independently

Set out the clothes in a pile with the first item to be put on at the top

Try using the task breakdown technique. This involves breaking the task into simple, manageable steps and doing them one step at a time. You may have to gently remind the person with each step, or do several of the steps yourself. Reassurance and praise for each successful step will make the task more pleasurable for both of you

PROBLEMS WITH THE ENVIRONMENT

Noise, people, bright lights and clutter in the room can be distracting for a person with dementia trying to get dressed. Some older people, and especially those with dementia, have different temperature needs. Sometimes you will feel that it is oppressively hot inside the house, while the person with dementia finds the temperature quite comfortable.

What to try:

Remove other distracting items such as out-of-season clothes

Make sure the room is warm enough for the person with dementia

Provide adequate lighting. Also make sure that the light in the wardrobe is at the same brightness as the light in the room, so that the person won’t have to get used to different light levels.

LACK OF PRIVACY

Getting dressed is a very personal and private activity for most of us. Many people have never dressed or undressed in front of another person and this can be an uncomfortable experience. When a person needs assistance it also conveys the message that they are no longer able to care for themselves. This loss of independence can be very difficult to accept.

What to try:

Close the door and pull down blinds to create a feeling of privacy

If the person is able to manage most of the tasks, it is far better to leave them to it and assist from a distance, intervening only when necessary.

PROBLEMS MAKING DECISIONS ABOUT WHAT TO WEAR

It is important to encourage a person with dementia to select their own clothing, although for many it may be difficult to make even simple decisions.

What to try:

Simplify the number of choices. For example, offer two outfits to choose between, or offer a choice between a white shirt and a blue shirt

Layout articles of clothing in sequence on the bed. They should be arranged in the order that they are meant to be put on

Try laying out lightly coloured clothing on a dark bedspread. For someone with visual problems, contrasting colours may help a person with dementia see articles of clothing from the background colour of the bedspread.

ENSURE THE SAFETY AND COMFORT OF THE PERSON BALANCED WITH AUTONOMY AND RISK TAKING

When planning activities for a person who is suffering from dementia, it is important to ensure that the activities provided are focused on ensuring the safety and comfort of the client.

Making sure that the client is safe as well as making sure the client has balance with autonomy and risk taking.

SAFETY

The goal is to find a balance between maintaining safety and ensuring resident autonomy and comfort. This will be different for each person and may evolve as the person’s needs and abilities change. The right balance of a person’s safety and autonomy must be established by means of an ongoing evaluation process that includes the person’s family and consideration of their lifelong values of personal autonomy and tolerance for risk.

Example: cleaning supplies are locked, yet residents who wish to help with tidying the unit have supervised access to the tools they need.

What the current available evidence says:

Install secure locks on all outside windows and doors, especially if the person is prone to becoming lost.

Remove the locks on bathroom doors to prevent the person from accidentally locking himself or herself in.

Use cabinet locks in the kitchen and any place where cleaning supplies or other chemicals are kept. Remember that cleaning and other toxic fluids can be mistaken for juices and other forms of beverage.

Label medications and keep them locked up. Also make sure knives, lighters and matches are secured and out of reach.

Remove scatter rugs and anything else that might contribute to a fall.

Make sure lighting is good both inside and out – especially for aging eyes

WALKING AND WANDERING

Walking is an everyday activity that most people take for granted. It is not only the main form of transportation, but it is an excellent natural exercise often recommended as it helps people stay healthy and live longer, control weight, relax and be happy, enjoy time outdoors, or feel a sense of freedom.

People with dementia should not be deprived of their liberty to walk, and every effort should be made to make walking as safe as possible and less worrying for their families and caregivers. However, walking may result in wandering, which is a common behaviour for people with dementia and may be triggered by the desire to move about, search for someone or something, remove themselves from their current surroundings, or respond to a physical need, such as hunger or the need to use the washroom. In itself, wandering is not a bad or harmful behaviour and when done in a safe environment, can be a healthy outlet and a means of exploring the environment and making connections for a person with Alzheimer's disease or other related dementias. Helping to make wandering a safe activity involves looking at all the potential triggers of the behaviour.

By determining what may be contributing to the behaviour, it may then be possible to find ways to make walking a safer and/or purposeful activity. Offering meaningful activities and providing a safe place to walk both indoors and outdoors may reduce the occurrence of wandering and yet maximize the potential for independent living within the care home.

Regarding the use of assisted technology, measures should be taken to ensure that ethical issues are always taken into consideration and that assisted technology is suited to the needs of each individual user.

Restrictive or coercive measures should not be used, and instead alternative means of ensuring safety or providing care need to be adopted.

What the current available evidence says:

Wandering

Make sure that the person carries some kind of identification or wears an identification bracelet. If the person gets lost and is unable to communicate adequately, identification will alert others to the person’s medical condition

A picture or video of the person should be kept and updated every 3 months to assist police if the person becomes lost

Ensure that all exits are secure and have alarms when exits are opened without consent

Ensure that all potentially harmful objects are stored safely, especially at night

The nearest police station should be informed of persons who have a tendency to wander

PARTICIPATING IN MEANINGFUL ACTIVITIES

Making meaningful activities and experiences possible is critical to a person-centred approach. Residents are encouraged and supported to participate in a wide range of interests and activities. It is important to consider one-on-one activities, as they can be just as meaningful to the person as group activities. It is also important to consider the person’s abilities when choosing activities.

People should feel they are involved and there is meaningful and enjoyable activity for them to do.

Boredom or lack of engaging and meaningful activities can lead to the behaviours that challenge us and cause distress to the resident.

It is important to recognize that apparent boredom may result from a lack of initiative due to the disease.

Individuals may need direction to undertake an activity, which they could not start on their own. Staff members need training to know how to appropriately engage individuals and when to draw back.

Each resident (or representative) participates in decisions about the services offered, and is enabled to exercise choice and control while not infringing on the rights of other people.

Rather than solely focusing on offering activities, consider what the activity allows the person with dementia to experience. Experiences that are meaningful to persons with dementia are those that allow them to express themselves, to connect with others, to feel a sense of freedom and purpose and to have fun.

ACTIVITIES CAN BE AN IMPORTANT WAY OF HELPING A PERSON WITH DEMENTIA TO RETAIN THEIR INDEPENDENCE.

What the current available evidence says:

Studies have found that people with Alzheimer’s disease benefit from physical activity. Physical activity improves overall physical health, mental, emotional and social wellbeing. Health care providers must follow guidelines to ensure activities are within levels of capabilities and within range of abilities.

Activities:

Keeping physically active has been found to help minimize the physical and mental decline inherent in dementia

Simple activities are more successful

Staff should provide positive reinforcement when the person is performing an activity

Some individuals may need assistance in getting started or choosing an activity. When conducting an activity, give step by step instructions and remember to praise as a step is successfully completed. Also, use prompting and cues when needed

Watch for signs of agitation or frustration with an activity. Gently help or distract the person to something else

As part of the person’s day, incorporate activities of enjoyment and try to do them at a similar time each day

Physical activities have a positive impact on cognition, well-being, mood, sleep and functional ability of people with dementia. While encouraging residents to partake in physical activities every effort should be undertaken to prevent falls and fractures.

What the current available evidence says:

Physical Activity:

There is good evidence to indicate that individualised exercise programs have an impact on functional performance

Individualised exercise programs should be tailored based on the person’s ability and capabilities

Physical activities should reflect what the person enjoys. This physical activity should be incorporated into the day

Expectations of the person’s physical ability should be considered when planning their day

When the person is partaking in physical activity, care providers should be watching for signs of strain and distress. Be aware of any discomfort or signs of overexertion. Talk to the person’s doctor if this happens

Independence is very important when doing physical activity. Allow creativity even if that means a not-so perfect outcome

Spend time outside when the weather permits

Exercise often helps everyone sleep better

There is an association between greater involvement of families and greater resident participation in activities

Provide an environment that encourages spontaneous activities and supports persons in facilitating their own activities when they choose. Being able to maintain activities one enjoyed throughout one’s life can help a person during the transition period helping the person adjust to the new home.

A change of scenery is important for some; consider involvement in activities both within the care home as well as the broader community.

It is your duty of care towards people with disabilities does not mean a duty to avoid all the risks that are, in fact, really just part of life.

ACTIVITY SELECTION

Enjoyment doesn’t require memory.

Each day there are many things that provide us with purpose and pleasure. For a person with dementia, the need for a good quality of life is not diminished. However, without some assistance from family and carers, their ability to achieve purpose and pleasure is much more difficult.

Ideally, activities should:

Compensate for lost activities

Promote self-esteem

Maintain residual skills and not involve new learning

Provide an opportunity for enjoyment, pleasure and social contact Be sensitive to the person’s cultural background

Some helpful guidelines when planning activities:

Consider all that has made the person unique - This means knowing the person’s former lifestyle, work history, hobbies, recreational and social interests, travel and significant life events.

Activities can re-establish old roles - Make use of skills that have not been forgotten, such as buttering bread, washing up or watering, sweeping and raking in the garden. These are also ways in which a person with dementia can contribute to the household and feel useful. Encourage an area of responsibility no matter how small.

Activities can give relaxation and pleasure - A person with dementia may enjoy an outing even if they do not remember where they have been. What is important is that the moment is enjoyed, even though the experience may be soon forgotten.

Simple and unhurried activities that are meaningful are best - Give the time and space necessary to allow the person to do as much as possible. Focus on one thing at a time. Break down activities into simple, manageable steps.

Communicate one instruction at a time.

Prepare a safe working area - People with dementia often have difficulty with visual perception and coordination. Ensure that surfaces are uncluttered with few distractions and noise. Good lighting, without glare, individual seat preferences and correct work heights are all important. Using plastic containers might help to avoid breakages.

Don’t allow activities to reinforce inadequacy or increase stress - Abilities can fluctuate from day to day. Activities can be adapted and tried another time if not successful or enjoyable.

Use times to suit the person’s best level of functioning - To ensure maximum success when carrying out activities it is best to consider the times of day when the person is at their best. For instance, sometimes walking is best done in the morning or the early afternoon. However for some people who are particularly restless later in the day, or who have had a particularly long or meaningless day, a late afternoon walk may be better.

Don’t over stimulate - Be selective with outings. Avoid crowds, constant movement and noise which many people with dementia find overwhelming.

Allow an emotional outlet - For many people, music or contact with babies, children or animals provide positive feelings. Excellent memories of past events are often kept and looking through old photos, memorabilia and books enables the recall of earlier times. The opportunity to relive treasured moments can be deeply satisfying. If reading skills have deteriorated make individual audiotapes. Locate picture books and magazines in the person’s areas of interest.

Include sensory experiences - Some sensory experiences that may be enjoyed are:

o Hand, neck and foot massage o Hair brushing

o Smelling fresh flowers or pot pourri o Using fragrant essential oils

o Stroking an animal or different textured materials o A visit to a herb farm or a flower show

o Provide a rummage box that contains things that the person has been interested in

A sense of movement and rhythm is often retained longer than most abilities - Hire an exercise bike or a walking machine for rainy days. Be spectators or participants at dance classes or walk the dog together. Walkers enjoy the wider world while getting much needed exercises.

Consistency is important - It can be helpful to write out an activities care plan if different people are caring for the person. This will ensure that activities are consistent and are suited to the individual needs of a person with dementia. Activities play a significant part in the dealing with changed behaviours. Knowing what helps to calm or divert a person when they are restless or distressed is very important. This can be particularly helpful for respite workers.

Don’t give up - Mistakes and failures will happen, but don’t let the person with dementia feel like a failure. Keep trying.

ACCESS INFORMATION ABOUT THE PERSON’S REMINISCENCES AND ROUTINES WITH FAMILY AND CARERS

When developing appropriate activities for your client it is relevant to use family, carers and/or significant others to assist in developing the activities by accessing information about the client, these activities help the client reminisce about old time and routines.

Family members are a critical factor in assisting you, the care worker, in planning, developing and implementing activities that are appropriate and relevant to the individual.

Family members include:

Spouse

Siblings

Sons

Daughters

Friends

It is important to remember that not all advice from these people might be appropriate; as they might be suffering or experiencing a number of emotions such as:

Anxiety

Sadness

Guilt

Grief

The physical and emotional demands of caring for someone with dementia can be high. As the amount of care that is needed increases, more time and energy is required from the carer.

Some of the questions the carers may ask are:

HOW DO I MANAGE OUR COMMUNICATION NEEDS?

You may notice changes in the way the person you care for communicates with you. For example, they may find it hard to find a word, speak fluently, understand, write, read or express emotions. They may also lose normal social conventions of conversation and may ignore what you're saying or interrupt you.

Here are a few tips for communicating with someone who has dementia:

Consider other causes of communication difficulties, for instance having their hearing and eyesight checked to make sure that they aren't a factor

Stay calm and allow time for them to understand and respond to you

Remember that they still have feelings and emotions even though they may not always understand what you're saying

Use short, simple sentences and help orientate them by describing what you're about to do, who is about to visit and their relationship with this person

Try not to argue, be condescending, order the person around, ask questions that rely on a good memory or talk about them in the presence of other people

Use positive body language and touch because this is an important part of communication

Be consistent in your approach to communication Try to avoid talking in a noisy environment.

HOW DO I MANAGE THEIR EATING AND NUTRITION NEEDS?

If someone has dementia, their eating and drinking habits should be carefully monitored no matter if they live in their own home or in an aged care home. This is because people with dementia may forget to eat and drink, and they may also find it difficult to chew and swallow. Here are a few tips to help you manage their eating and nutrition needs:

Ask their doctor to check that there isn't a treatable cause of appetite loss, such as acute illness, depression or denture pain

Offer snacks and meals regularly, perhaps trying 5-6 small meals a day

Try an alarm or phone call to remind them about mealtimes

Only serve one course at a time

Serve foods that are familiar to them

Avoid using plates with patterns

Demonstrate chewing if this seems to be the problem, and eat with the person so that they can copy you

If they're having difficulty with cutlery, perhaps serve them finger foods instead

Consider nutrition supplements, particularly in later stages of dementia when people tend to lose a lot of weight. Ask a dietitian or doctor about what supplements might be helpful

Offer drinks regularly. This is particularly important in hot weather

Encourage and find ways for them to participate in regular physical exercise.

HOW DO I MANAGE THEIR HYGIENE NEEDS?

You may find that the person you're caring for loses interest in maintaining their personal hygiene. Here are a few tips to help you manage their hygiene needs:

Be patient and encouraging about bathing, making certain there's enough warmth and light in the bathroom

Play calming music if they like this and choose the best time of day for them for personal care. For example, they may be calmer in the morning so this might be the best time to look after these needs

Offer limited options, such as the choice between a bath or a shower

Use simple step-by-step instructions

Lay out the items needed for a bath or shower in sequence

Address their fears of water, of falling and of feeling out of control if these are issues. For example, use a basin for washing or a hand-held shower.

Other hygiene needs they may require help with include toileting, shaving, cleaning ears, providing fresh clothes, and maintaining dental care and personal grooming.

HOW DO I MANAGE THEIR CONTINENCE NEEDS?

When a person has dementia, their mental functions decline and this may result in incontinence (the term used to describe the loss of control of the bladder and/or bowel). This is because being in control of these functions depends on being aware of bodily sensations such as the feeling of having a full bladder and the memory of how, when and where to respond.

There are many ways to manage incontinence including respecting the person's privacy and dignity in what can be a humiliating situation. Here are a few tips to help you manage their continence needs:

Observe patterns of when the person empties their bladder and/or bowel and use this pattern to remind them, at regular intervals, to go to the toilet

Watch for non-verbal clues such as pulling on clothes and increased agitation, and when this happens, use short, simple words to suggest they go to the toilet

Make sure the bathroom isn't too far away, the bed isn't too high to get in and out of, the toilet paper can be easily seen and the room the toilet is in is clearly marked

Consider installing nightlights in the hallways and in the toilet to help them find their way to the toilet at night

Install raised bars to help them get on and off the toilet

Use clothing with elastic and Velcro wristbands so they can easily remove clothing and put it back on again

Use continence aids and appliances such as pads if necessary

Introduce regular low-caffeine drinks, a high fibre diet and a regular exercise routine.

HOW DO I MANAGE THEIR SLEEPING HABITS?

People with dementia may be confused between night and day, making sleeping during the night difficult. Their sleeping habits may also be affected by:

Changes in their brain's biological clock

Medical conditions

Side effects of medication

Depression

Urinary tract infections causing frequent need for toileting

Arthritis

Sleep apnoea

Sleeplessness can also be caused by:

Going to bed too early

Not getting enough exercise

Drinking too much caffeine or alcohol

Feeling hungry

Feeling too cold or too hot

Poor lighting

Changes to daily routines

Ask a doctor if the cause of sleeplessness can be treated. For example, the sleeplessness might be due to depression or the side effects of medication.

HOW DO I MANAGE MEMORY LOSS?

Here are a few tips to help you manage if the person you care for has memory loss:

It's important for them to carry appropriate identification at all times including their name, address and an emergency contact number. An identity bracelet is ideal for this purpose

You may need to consider a few home modifications such as sensor lighting and installing equipment such as automatic cut-offs for hot water jugs and other appliances such as the iron

Labelling doors and cupboards with what is in them such as plates and cutlery

Place a communication book by the phone or somewhere handy to provide a list of what's happening and who has been to visit

Display emergency and commonly used telephone numbers near the phone

HOW DO I MANAGE IF THEY ARE CONFUSED?

Here are a few tips to help you manage if the person you care for is confused:

Try not to make any changes to their familiar environment unless they are absolutely necessary. An example might be installing equipment such as a ramp for their safety

Consider having someone to assist them with medications as they can be a common cause of confusion

Use a dose administration aid to assist the person to self-administer their medications

Use notice boards and reminder notes to list the things that are happening or need remembering such as medication

Install nightlights in the hallways and in the toilet to help them find their way to the bathroom at night

Easy to read clocks and large calendars can be helpful reminders of the time and date

HOW DO I MANAGE IF THEY ARE AGGRESSIVE?

Here are a few tips to help you manage if the person you care for is aggressive:

Make sure that relevant health professionals and family and friends know about any aggressive behaviour

Always look to protect yourself from aggressive outbursts in advance. Plan for safe places in the house to protect yourself or plan to leave the house if this is the safer alternative for you. Try to have locks on at least some rooms in the house

Look at what triggers the aggression to help minimise the outbursts

As much as possible, remove or hide any items in the house that could be used to hurt you — cupboards with locks, especially in the kitchen and bathroom, can help

Outbursts that occur in public can be especially difficult as many onlookers will not understand the situation. Try not to be affected by ill-informed comments and advice

Look after yourself during and after an aggressive outburst and seek support from someone you trust to talk about the incident

Ask for professional advice for ways to manage the aggression. Your doctor or other health professional can advise you about whom to contact

PROVIDE SUPPORT AND GUIDANCE TO FAMILY, CARERS AND/OR SIGNIFICANT OTHERS WHERE APPROPRIATE

CARERS OF PEOPLE WITH DEMENTIA ARE NOT ALONE

A large number of carer support groups exist throughout Australia. Many people find comfort and practical assistance by attending meetings with others who know what it is like to care for a person with dementia.

Support groups bring together families, carers and friends of people with dementia under the guidance of a group facilitator. The facilitator is usually a health professional or someone with firsthand experience of caring for a person with dementia. Contact the National Dementia Helpline for more information.

MANAGING STRESS AS CARERS

Everyone has different ways to manage stress. Managing stress improves the well-being and may help in their caring role, so it can be useful to learn some better ways to manage it. Bookstores and libraries have a range of books and tapes on different ways to manage stress.

Some suggestions for managing stress include:

A consistent schedule can make life easier when living with a person with dementia

It often helps to remember that the person with dementia is not being difficult on purpose, but that their behaviour and emotions are affected by dementia

Learn as much as possible about dementia, and encourage friends and relatives to do so as well

It is important to talk things over with family, friends and other people in a similar situation

Take care of themselves by looking after your diet, getting regular exercise and maintaining your social contacts and lifestyle

Be realistic about what they can expect of themselves and recognise that they will be a better carer if they take care of themselves

ASKING FOR HELP

As a carer, they can take care of themselves by being open about what help they need now, and planning ahead for what help they may need in the future. Seeking outside help is also important for many carers. Doctors, psychologists, social workers and counsellors all have experience helping people who are caring for others.

Some suggestions for reaching out to others include:

Aim to share the care of the person with dementia

Don’t hesitate to ask for help

Suggest specific ways that friends and relatives can help, such as bringing a meal, helping with the housework or shopping

Organise regular breaks – this is very important. Some friends and relatives may be able to care for the person with dementia on a regular basis. Local day centres can also offer suitable programs for people with dementia and respite for carers

Use the services of support organisations such as Alzheimer’s Australia and Carers Victoria

COMMUNICATING WITH FRIENDS AND RELATIVES

A carer’s job can be made more difficult by a lack of understanding from other people.

Helping friends and relatives understand what is happening may make their job easier.

Some suggestions to help with communication include:

Provide information about dementia to friends and relatives. Useful material is available from Alzheimer’s Australia and much of it is written in community languages as well as English

Explain that although a person with dementia may look or appear fine, they have an illness that is devastating, but not contagious

Accept that some friends may drift away

Ask visitors to come for short visits, do not have too many visitors at one time

Suggest that family and relatives who visit come prepared for activities, such as bringing a snack, going for a walk, bringing a simple project to do together or looking at a photo album

Prepare visitors for problems with communication and suggest ways that they might deal with these

TOPIC 4 – IMPLEMENT STRATEGIES WHICH MINIMISE THE IMPACT OF BEHAVIOURS OF CONCERN

IDENTIFY BEHAVIOURS OF CONCERN AND POTENTIAL TRIGGERS

Dementia can cause changes in the behaviour people suffering the condition. There are many reasons why a person’s behaviour may change. Dementia is a result of physical changes in the brain, and these can affect the person’s memory, mood and behaviour. Sometimes, behaviour may be related to these changes, but at other times, the behaviour may be triggered by changes in the person’s environment, health or medication. The typical behaviours of concern related to dementia include:

Sleeping problems

Hoarding

Repetitive behaviour

Wandering

•

Sundowning

SLEEPING PROBLEMS

Problems with sleeping are common for people with dementia. Some people sleep during the day and are awake and restless at night. Some are no longer able to tell the difference between night and day while others are simply not as active as they used to be, and so need less sleep.

Problems with sleeping or late evening agitation are often a stage in dementia that eventually passes. Many people with dementia sleep more during the later stages of the illness.

Sleep problems are among the most difficult dementia symptoms for carers. Families and carers must be able to get adequate sleep themselves. Plan regular periods of rest and regular breaks for yourself, as well as for the person with dementia.

HOARDING

People with dementia may often appear driven to search for something that they believe is missing and to hoard things for safe keeping.

Some causes of hoarding behaviours include:

Isolation – when a person with dementia is left alone or feels neglected, they may focus completely on themselves. The need to hoard is a common response

Memories of the past – events in the present can trigger memories of the past, such as living with brothers and sisters who took their things, or living through the depression or a war with a young family to feed

Loss – people with dementia continually lose parts of their lives. Losing friends, family, a meaningful role in life, their income and a reliable memory can increase a person’s need to hoard

Fear – a fear of being robbed is another common experience. The person may hide something precious, forget where it has been hidden and then blame someone for stealing it.

REPETITIVE BEHAVIOUR

People with dementia may say or ask things repeatedly. They may also become very clinging and shadow the person caring for them, even following them to the toilet. These behaviours can be very upsetting and irritating for families and carers.

WANDERING

Wandering is quite common among people with dementia and can be very worrying for those concerned for their safety and wellbeing. The person’s failing memory and declining ability to communicate may make it impossible for them to remember or explain the reason they wandered.

SUNDOWNING

People with dementia may become more confused, restless or insecure late in the afternoon or early evening. This is known as sundowning, and these behaviour changes can become worse after a move or a change in routine.

The person with dementia may become more demanding, restless, upset, and suspicious, disoriented and even see, hear or believe things that aren’t real, especially at night. Attention span and concentration can become even more limited. Some people may become more impulsive; responding to their own ideas of reality, and this may place them at risk.

IDENTIFY POTENTIAL TRIGGERS

Triggers for behaviours of concern are many and varied but some of these can include:

MEDICAL CAUSES OF SLEEPING PROBLEMS IN DEMENTIA

Sleeping problems may be caused by physiological or medical causes including:

Brain damage (caused by the dementia) that affects the ‘biological clock’ in the brain that directs our sleep patterns

Illness such as angina, congestive heart failure, diabetes or ulcers

Pain caused by conditions such as arthritis

Urinary tract infections that cause a frequent need to urinate

Leg cramps or ‘restless legs’, which can indicate a metabolic problem

Depression that causes early morning awakening and an inability to get back to sleep

Side effects of medication, such as antidepressants and diuretics

Snoring and sleep apnoea

Ageing that causes sleep patterns to change so that some people need more sleep and some need less

ENVIRONMENTAL CAUSES OF SLEEPING PROBLEMS IN DEMENTIA

The environment of the person with dementia can cause sleeping problems in a number of ways including:

The bedroom may be too hot or too cold

Poor lighting may cause the person to become disoriented

The person may not be able to find the bathroom

Changes in the environment, such as moving to a new home or having to be hospitalised, can cause disorientation and confusion

OTHER CAUSES OF SLEEPING PROBLEMS IN DEMENTIA

Other causes of sleeping problems may include:

Going to bed too early

Sleeping too much during the day

Overtiredness, causing tenseness and inability to fall asleep

Not enough exercise, so the person does not feel tired

Too much caffeine or alcohol

Feeling hungry

Agitation following an upsetting situation

Disturbing dreams

CAUSES OF WANDERING

Reasons that a person with dementia might wander include:

Changed environment

Loss of memory

Excess energy

Searching for the past

Expressing boredom

Confusing night with day

Continuing a long-held habit

Agitation

Discomfort or pain

Believing they have a job to perform

CONTRIBUTE TO TEAM DISCUSSIONS ON SUPPORT PLANNING AND REVIEW AND TAKE ACTION TO MINIMISE THE LIKELIHOOD OF AND REDUCE THE IMPACT OF BEHAVIOURS ON THE PERSON AND OTHERS

While you are working with people suffering dementia in a care situation, you will be required to attend care meeting in order to assist your clients with their care strategies.

This will mean contributing to discussions on care planning and reviewing a client care plan. These meetings will be regular and will provide you with the opportunity to discuss any challenging behaviours or behaviours of concern that could impact on the health and safety of your client. You will have the opportunity to discuss these issues with other professionals in order to find a way of managing the behaviours and ensuring the clients safety (especially if the behaviour is that of wandering).

Some ideas that can be offered to minimise behaviours of concern could be:

SAFETY INSIDE THE HOME FOR PEOPLE WITH DEMENTIA

The best living environment for a person with dementia is one that helps them to be as happy and independent as possible. Familiarity with environment and routines is important for a person with dementia. The home environment should help them know where they are and help them find where they want to go. Changes in the environment may add to confusion and disorientation.

Case study:

Joan is an 86-year-old lady who has recently moved in with her son and his wife. She lives in a unit attached to the house which has a bedroom, ensuite bathroom, kitchen and living area. Joan is beginning to suffer from dementia; it is in its early stages. She remains determined however that she can do her own cooking, cleaning and look after herself. The problem is Joan has a habit of turning the gas on the stove without lighting it, then walking away.

The carer has come up with a solution for the family as they are very concerned that she will one day leave the gas on for too long.

The carer has advised that the gas be turned off to her unit at the tap outside and supply Joan with a microwave to heat her food.

Joan has not been told that the gas has been turned off, just that it no longer works, and she is very happy to have the microwave instead as she has commented that the stove is not working properly in the past. This is because she turns the gas on and does not light it, so it doesn’t cook anything.

Joan has to be instructed on how to use the microwave and pictures have been placed on the wall beside the microwave so that she can operate it but she is very happy with this scenario.

The carer and the family have done what it has taken to keep both Joan and the rest of the family safe in the home.

Some tips for making the home a safe environment for the person with dementia include:

Arrange furniture simply and consistently and keep the environment uncluttered

Remove loose rugs and seal carpet edges that may be safety hazards

Install night-lights in the hallways and in the toilet that may be useful to help a person find their way to the bathroom at night

Dispose of, or safely store, all old medications and hazardous materials such as kerosene

Remove electric blankets and hot water bottles that can be a safety hazard for a person with dementia

Install safety switches, which are now recommended, in homes

Use hot water jugs and other appliances with automatic cut-off mechanisms

Replace more dangerous forms of heating, such as bar radiators, with safer heating options, such as column heaters

Check appliances like heaters and toasters to make sure they do not present any safety hazards

Replace long electrical cords on appliances with coiled or retractable cords.

Consider thermostats to control the temperature of water that comes out of the hot water taps

Check that smoke detectors are fully functional – a person with dementia may need someone else to check the battery and make sure the alarm is loud enough

SAFETY OUTSIDE THE HOME FOR PEOPLE WITH DEMENTIA

Some people with dementia may become disoriented and get lost in unfamiliar, or even previously familiar, surroundings. It is important that they carry appropriate identification at all times, including their name and address and an emergency contact number. An identity bracelet is ideal.

Some tips for making the area outside the home safe for the person with dementia include:

Keep paths well swept and clear of overhanging branches

Check catches on gates

Remove poisonous plants and dispose of hazardous substances from sheds and garages

Case study:

Joan began wandering. Not in the true sense of the word really, she knows where she is going, she is off to the shops. The trouble is she gets a few doors down and cannot go any further. She is very frail and weak and cannot travel far.

This would not be too much of a problem except that she does not know her way home. She also has no idea of her address any more.

She has been given a card that is in her pocket and also a sticker on her walking frame that has a phone number on it. This number will contact her son.

She is also supplied with an alarm that is around her neck that she can push, and it will dial her family’s phone numbers.

INDEPENDENCE AIDS FOR THE PERSON WITH DEMENTIA

Aids to independence and safety include:

Hand-held shower hoses that allow a person to direct the flow of water as desired

A shower chair or bath seat that allows a person to be seated while bathing and eliminates the need to lower oneself into the bath

Handrails near the bath, shower and toilet to provide support and balance

Easy-to-read clocks and large calendars to help orient to date and time

Heat sensors or alarms in case of emergency

A list of contact names and numbers in large print placed by the telephone allows the person to stay connected more easily

CHANGES TO THE ENVIRONMENT FOR PEOPLE WITH DEMENTIA

Solving problems involves continual assessment and planning. Principles you can use to guide any changes to the environment of a person with dementia include:

Involve the person with dementia in identifying problems and deciding on changes to their environment, where possible

Make sure that modifications suit that person

Respond to specific problems – don’t introduce standard modifications

Change as little as possible – keep the familiar

Build on strengths and maximise their independence

Try simple solutions first

Make sure that modifications are home-like and dignified

Changes should be appropriate to the person’s age and culture

Weigh up risks and try to achieve a balance between safety and independence

Make sure that family, carers and workers have a safe working environment

Her environment has been modified to the extent that she requires and each week or so, something else needs to be changed in order for her to manage on her own

All of these strategies have been implemented so that Joan remains as independent as possible without being at risk of injury.

Implementing strategies such as the ones Joan has in place can minimise behaviours that are difficult and unsafe. It can provide the client with a sense of independence and security and ensure they are safe.

EVALUATE IMPLEMENTED STRATEGIES WITH SUPPORT PLANNING TEAM TO ENSURE EFFECTIVENESS IN MINIMISING BEHAVIOURS

You will need to regularly review the implemented strategies to ensure they remain valid for your client. Changes in mental state can happen rapidly in clients with dementia, so it will be important that you review the strategies frequently and make any further changes each time.

This review and any associated changes will require corresponding notes in the care plan for your client and regular discussion and consultation with other care providers.

TOPIC 5 – COMPLETE DOCUMENTATION

COMPLY WITH THE ORGANISATION’S REPORTING REQUIREMENTS, INCLUDING REPORTING OBSERVATIONS TO SUPERVISOR

During your induction with an organisation you will be shown the correct procedures for completing reports on your clients. Whether these are completed electronically or in hard copy they must be an accurate reflection of the current health status of the client.

These reports are used to identify changes in the client that may need to be addressed by modification to the care plan. Remember, as the person responsible for delivering the service to the client you are best positioned to monitor the impact.

Make sure that you have alerted the supervisor to any concerns you may have about your clients. Do not assume that they will read every entry against the progress notes of each client. They will certainly read and act on the information if you inform them of exceptional observations or behaviours.

COMPLETE, MAINTAIN AND STORE DOCUMENTATION ACCORDING TO ORGANISATION POLICY AND PROTOCOLS

COMPLETE DOCUMENTATION

There will be a requirement of your role to document any observations or concerns about the clients you work with. These may include case notes, care plans, incident reports, family details, personal history, progress reports, financial dealings and other forms of documentation. Where reports are in hard copy handwriting must be legible.

Reports must be written in clear English, in black pen and be objective. This means you should not include personal opinion in what you write. For example, "When I arrived at his house, Bill was drunk" is a subjective statement. You have made the personal decision regarding whether Bill was actually inebriated or not. Written objectively this statement would be, "When I arrived at his house, Bill smelled strongly of alcohol." There may have been many reasons for why Bill smelled of alcohol that have nothing to do with drinking it.

Under The Freedom of Information Act1982 clients, or their legal representatives, have a right to read anything that you have written about them so be sure to use factual, respectful language at all times.

Incident/accident reports should be completed as close to the time of the incident as possible. These can be used in a court of law so make sure you are clear about the organisation's procedures for reporting an incident.

Many organisations rely on the accurate completion of documentation in order to receive government and other funding. Your induction to an organisation will include guidance on what reports need to be completed on a daily, weekly or at review time basis. Where anything exceptional happens, or you observe changes that impact on the welfare of the client, these should be documented and immediately reported to your supervisor. Always make sure your reports are signed and dated.

Where reports are completed electronically you will need to sit at the computer in a manner that aligns the spine and complies with workplace health and safety guidelines. Extended periods at the computer can cause physical problems if insufficient breaks are taken or bad posture used.

MAINTAIN DOCUMENTATION

Maintaining the security and confidentiality of client information is a key responsibility for your organisation. The Privacy Act 1988 and subsequent amendments (2012) highlight the importance of collecting and recording information about Australian citizens in a manner that upholds the law.

Your clients have the same right as you do to feel confident that personal information is respected and used only for the purpose identified.

Where documentation is completed in a setting other than an office, such as a client's home, you must ensure that the information is kept secure. Avoid leaving client files in your car or where others in the house can access them.

All documentation needs to be current, accurate and reflect how the needs of the client are met on an ongoing basis.

STORE INFORMATION

Your organisation will have clear policies and procedures for you to follow on how documentation is stored. Maintaining the privacy of the client information is required by law and all client files will be kept in a secure area with access to authorised personnel only. Generally this is on a 'need to know' basis. That is the people who need to know specific information about the client will have access.

Where the information is stored electronically, the files will be password protected. Only those who require access to the information will be given the password.

Where hard copy files are no longer required, they are usually destroyed by shredding or incineration.

If you become aware of any breaches of security of information, then you should report immediately to the person in your organisation who is responsible for maintaining documentation.

TOPIC 6 – IMPLEMENT SELF CARE STRATEGIES

MONITOR OWN STRESS LEVEL IN RELATION TO WORKING WITH PEOPLE WITH DEMENTIA

Case study:

Working with Joan is becoming very challenging. She yells and raises her fists at me when I walk in; She locks me out of her unit, and she will even throw things at me.

I don’t know what has happened? She has always liked me, and we have been great friends.

I have worked with Joan for over 12 months now and I never seen this behaviour.

I try for 3 weeks without saying anything to anyone, but she will not allow me inside, I just sit out the front crying because I am scared for her. She is just so angry now, and I don’t know what to do??

What do you think this carer should do?

This is a somewhat common symptom of dementia. Joan has become angry at the world but she does not realise it. Her carer thinks she has done something wrong. Not necessarily!

You should always ensure that you talk to people about your stress levels. Stress can become an issue when you are working with people with dementia. It is a very challenging job. They often don’t remember you, they do not want to do anything asked of you, they can become aggressive, they will abuse you for what appears to be no reason and most of all, you cannot help them to recover.

Some of the things you need to watch out for in yourself are:

Feeling overwhelmed

Sleeping too much or too little

Gaining or losing a lot of weight

Feeling tired most of the time

Loss of interest in activities you used to enjoy

Becoming easily irritated or angered

Feeling constantly worried

Often feeling sad

Frequent headaches, bodily pain, or other physical problems

Abuse of alcohol or drugs, including prescription drugs

USE APPROPRIATE SELF CARE STRATEGIES AND SEEK SUPPORT IF REQUIRED

There are some things you can do to assist you to manage your stress levels at work.

Always ensure you debrief at the end of each shift with a supervisor or person in charge

Take time for yourself, enjoy life and have a positive attitude, your point of view can influence your ability to cope with stress

Ensure you eat a healthy diet, poor diet can make you vulnerable to stress

Take time off work to rest, having time out can help reduce stress levels

Get plenty of sleep, it is very important for your emotional and physical wellbeing

Realise that it is not you that clients are angry with, it is their condition

Regular exercise, you should ensure you have plenty of regular exercise. It provide stress release and keeps your body healthy

Social support is important for general well-being and gives a buffer between you and stress

Process emotions, you should ensure you talk to people, keeping things bottles up will exacerbated stress

You can study about dementia that will help you to understand the condition and its symptoms which will help you to manage the behaviours in a different way

Talk to a supervisor, counsellor, psychologist, or other mental health professional right away if your stress leads you to physically or emotionally harm the person you are caring for

Remember, you need to care for yourself, or you cannot care for your clients. It is a difficult job, and if you are not at your best, you will not manage the daily challenges faced in your role as a carer.

SUMMARY

Now that you have completed this unit, you should have the skills and knowledge required to provide person-centred care and support to people living with dementia. It involves following and contributing to an established individual plan.

If you have any questions about this resource, please ask your trainer. They will be only too happy to assist you when required.

REFERENCES

http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Dementia_-_behaviour_changes

http://www.dementiacareaustralia.com/index.php?option=com_content&task=view&id=336&Itemid=81

http://www.health.vic.gov.au/older/toolkit/02PersonCentredPractice/

http://www.fightdementia.org.au/services/feelings.aspx

https://www.adhc.nsw.gov.au/__data/assets/file/0020/228062/Abuse_and_Neglect_Policy_Apr_2012.pdf

http://www.dementiacareaustralia.com/index.php?option=com_content&task=view&id=166&Itemid=81

http://www.fightdementia.org.au/services/hallucinations--false-ideas.aspx

http://www.alzheimer.ca/~/media/Files/national/Culture-change/culture_change_framework_e.ashx

http://www.fightdementia.org.au/services/activities-1.aspx

http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Dementia_taking_care_of_carers?open

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