PROVIDE SUPPORT TO PEOPLE LIVING WITH DEMENTIA

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%

 

 

 

 

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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

 

 

 

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are. They simply express them differently and it is our obligation to tune into their special way of sharing their needs and feelings.15

 

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

 

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

 

 

 

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 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. 16

 

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

 

 

 

16 ndc.hiirc.org.nz/…/Dementia-EffectiveCommunication-professionals-201.

 

 

 

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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.

 

 

 

 

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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.

 

 

 

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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

 

 

 

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 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. 17

 

17http://www.fightdementia.org.au/services/hallucinations–false-ideas.aspx

 

 

 

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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.

 

 

 

 

 

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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

 

 

 

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 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.

 

 

 

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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.

 

 

 

 

 

 

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T O P I C 3 – P R O V I D E A C T I V I T I E S F O R M A I N T E N A N C E O F D I G N I T Y , S K I L L S

A N D H E A L T H

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 one- to-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.

 

 

 

 

 

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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 dementia- friendly 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

 

 

 

 

 

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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 are and 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

 

 

 

 

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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.

 

 

 

 

 

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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.

 

 

 

 

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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.

 

 

 

 

 

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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. 18

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

 

18 http://www.fightdementia.org.au/services/continence.aspx

 

 

 

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 Use the toilet properly 19

 

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.

 

19 http://www.fightdementia.org.au/services/continence.aspx

 

 

 

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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.

 

 

 

 

 

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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.

 

 

 

 

 

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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

 

 

 

 

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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

 

 

 

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 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.

 

 

 

 

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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.

 

 

 

 

 

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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.20

 

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.

 

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

 

 

 

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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.

 

 

 

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 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

 

 

 

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 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.21

 

 

 

 

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

 

 

 

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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

 

 

 

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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.