This is the third of a series of dementia workbooks within a three stepped pathway including small bite sized learning presentations for both learners and those sharing learning with others in teaching or supervisory roles.
You can demonstrate your learning by completing the exercises within the workbook and the short quiz at the end. This will provide evidence to your manager of your learning.
Click on the section headings below to reveal the contents of each section of the workbook.
This workbook is supported by the following PowerPoint presentations:
- Behaviours that challenge us: part 1 (MS PowerPoint 1.3MB)
- Behaviours that challenge us: part 2 (MS PowerPoint 944KB)
By completing this workbook you will:
- identify behaviours that challenge (in relation to people with dementia);
- consider how a person with dementia will be affected by;
- physical needs and physical health
- psychological needs
- neurological impairment
- the environment and
- what happens during an interaction
- gain an understanding of how your communication approach will impact on behaviours that challenge;
- gain knowledge about emotional behaviour and the brain;
- consider what might cause specific behaviours and what might help the person with dementia;
- consider a range of other methods to help reduce difficult situations.
This workbook is the third within the series of dementia workbooks commissioned by the South West Dementia Partnership aimed to offer a free, easy to access, self directed learning resources on dementia. You may use and adapt the content of the workbook for non-commercial purposes providing you attribute it to the authors and publisher, in accordance with the Creative Commons Attribution-NonCommercial 3.0 Unported License.
The workbooks are not accredited but we hope the interest gained from completing these workbooks may lead you to progress to studying for qualifications in the future. This workbook builds on the information and knowledge gained in workbook 1 ‘Essential Dementia Awareness: Describing Dementia and Person Centred Approaches and workbook’ 2 ‘Further knowledge in Dementia’.
This workbook is divided into 3 sections:
- Section 1 highlights some key theoretical issues and background when considering behaviours that challenge us.
- Section 2 looks at some specific behaviours that challenge us within dementia care and offers some practical solutions based on the theories described.
- Section 3 offers some solutions and tools to help when supporting someone with dementia and minimising distressful behaviours and situations.
It is recommended that this workbook is read in conjunction with:
- Dementia Action Alliance and NHS Institute for Innovation and Improvement (2011) Call to Action – reducing the inappropriate prescribing of antipsychotics. www.institute.nhs.uk/dementiac2a
- Professor Sube Banerjee (2009) The use of antipsychotic medication for people with dementia: Time for action. A report for the Minister of State for Care Services. www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_108303
Linkage to Knowledge and Skills Framework and Qualification and skills framework
The workbook is linked to the following:
Knowledge and Skills Framework
- KSF C1 Communication a b, C2 Personal Development c d,
- C5 Quality f,
- C6 Equality/Diversity a b c d e
- HWB1: Promotion of health and well being a b,
- HWB2: Assessment and care planning to meet health & well being needs a d e,
Common Induction Standards
- 7.1.1, 7.1.2, 7.1.3, 7.2.1, 7.2.2, 7.2.3, 7.4.1, 7.4.3, 7.5.1, 7.5.3, 7.6.3,
Qualification and Credit Framework (QCF)
Please note this workbook will not lead to a qualification and is not accredited. This workbook may help support further study on an accredited course and could be used to link to the following aspects of QCF units in future study.
- DEM 301: Understand the process and experience of Dementia
- 3.2 Describe a range of different techniques that can be used to meet the fluctuating abilities and needs of the individual with dementia
- DEM 308: Understand the role of communication and interactions with individuals who have dementia
- Explain how individuals with dementia may communicate through their behaviour
- 2.1 Give examples of positive interactions with individuals who have dementia
- 3.4 Describe how the behaviour of carers or others might affect an individual with dementia
There were key subject areas which you covered in workbooks one and two. The subject areas included the different types of dementia, how the brain is affected when a person has dementia, and person-centred care.
You may wish to revisit certain areas already covered in workbook 1 and 2 prior to starting this workbook, in particular the sections relating to:
- The brain in workbook 2
- Person centred care in workbook 2.
There are links within the workbook which direct you to tasks and opportunities to explore further information about the subject areas.
You can demonstrate your learning by undertaking the tasks and completing the short quiz at the end of the workbook. You will need an exercise book to capture your answers and this will provide evidence to your manager of your learning.
The workbook can be completed in your own time and at your own pace.
Section 1 Theoretical background
As dementia progresses and more brain cells are affected, the person with dementia is often left struggling to make sense of the world around them. The ability to manage everyday life skills becomes compromised and even the tasks which previously appeared to need no effort become increasingly difficult and potentially frustrating.
Therefore supporting and caring for the person to meet both their physical and psychological needs can be challenging for care workers. For example an angry reaction by a person with dementia to some situations, and any physical affront experienced, can be hard to understand and can feel emotionally distressing for a care worker..
There are a wide variety of changed behaviours which can pose difficulties for the person trying to provide support. These behaviours include:
- Angry (aggressive) behaviour This could be verbal such as shouting angrily or non verbal behaviour such as hitting out at others in many different forms e.g. kicking, pinching, slapping others.
- Excessive walking (wandering behaviour) This is when people spend long periods of time walking either repetitively or walking long distances. It is sometimes described as agitated behaviour. This can also be described as ‘risky’ behaviour if it is considered that there is a risk of the person falling or getting lost when outside.
- Repetitive behaviours This might be repetitive movements or speech – saying words, asking questions or making sounds, rocking, rubbing parts of the body repeatedly.
- Vocally disruptive behaviours This might be shouting, swearing, screaming or grunting.
- Dis-inhibited behaviours This ranges from taking clothes off, masturbating or making sexual advances.
There are also many other behaviours such as being withdrawn and unresponsive, suspiciousness of other people, making accusations, sleep disturbance etc which staff can struggle to know how best to respond.
These range of behaviours are often described as ‘difficult’. People with dementia can sometimes be labelled according to the behaviour. For example ‘he is a wanderer’. This ‘label’ can have a negative impact on both how the individual is perceived and how the person is supported.
How we make sense of a person with dementia’s behaviour, its cause and its purpose has been and continues to be a controversial issue within dementia care. But this is a crucial area because how behaviour is interpreted will influence how we respond. For example if we consider a person’s behaviour as resulting purely from brain dysfunction we are more likely to propose drugs as a solution. However if we adopt a bio-psychosocial approach this suggests that a person’s behaviour is the result of the interactions between biological aspects, psychological and social environment. Taking this approach we are more likely to seek explanations from the interactions between the person and their environment.
This workbook takes this bio-psychosocial approach and aims to consider these behaviours as a communication by the person with dementia in an attempt to address unmet needs. For this approach to be successful it is necessary for those in caring roles to be curious about and understand all aspects of need and how they interplay with a person’s current situation – taking a ‘inquiring’ approach to discovering helpful approaches.
Initially this workbook will highlight key factors and theories which may help understand the differing needs of people with dementia and to understand factors that can result in challenging behaviours. This is followed by a focus on a few specific behaviours that workers appear to struggle with most, suggesting possible causes and what might help. Finally other general approaches are described in order to give you a range of ideas and tools to assist you when caring or working with people with dementia, and thereby minimising difficult situations.
Maslow’s (1943) hierarchy of needs is often portrayed in the shape of a pyramid, with the most fundamental level of needs at the bottom. This first layer is sometimes referred to as ‘physical’ or ‘physiological’. Air, water, and food are requirements for survival in all animals, including humans. Clothing and shelter provide necessary protection from the elements. For the most part, essential physical needs are obvious – if they are not met, the human body simply cannot continue to function.
Figure 1. Maslow’s (1943) Hierarchy of needs pyramid.
We are driven to have our essential physical needs met and there are powerful messages being generated within the brain to help regulate and meet these internal needs. These messages then cause us to adapt our behaviour to the environment.
These essential needs are for;
- Appropriate body temperature
- Access to the toilet
- Sexual needs
In Chapter 3 of Workbook 2 you were asked to always consider the following;
- Exercise: does the person have opportunities to move around?
- Good diet: is the person getting enough to eat?
- Having enough fluids: is the person getting enough to drink?
- Being free from pain and infection: is there any sign of physical illness which could be causing pain or discomfort?
When our needs are met this helps us to be calm and relaxed. When these essential physical needs are not met we react to being in discomfort in a variety of ways. A person with dementia may have difficulties in a number of ways in meeting these essential needs:
Difficulty finding the images
Powell J (2007) Difficulties in understanding.
Difficulty putting the images in order
Powell J (2007) Difficulties in understanding.
Losing parts of the image
Powell J (2007) Difficulties in understanding.
Make a note in your workbook and how you feel when your needs are not met
When a person has dementia their ability to meet these needs becomes increasingly dependent on the support of others. Maintaining a person’s essential physical needs requires a high degree of observation and imagination on the part of those providing support.
Physical pain and discomfort
There are many physical conditions that affect a person’s physical well being. For example: diabetes, osteoarthritis, anaemia. Certain conditions may result in a person living with chronic pain and discomfort.
When someone has dementia they may struggle to be able to locate the cause of their discomfort or communicate this verbally. Therefore considering what physical conditions they are living with becomes an important part of thinking about overall well being.
In Maslow’s hierarchy of needs you will have seen how safety needs are the next important level of needs which we seek to have met. To feel secure and safe within the various aspects of our lives is important so we feel able to function and can be in a relaxed state.
This can be about feeling safe within our relationships or financially, as well as more immediate safety concerns of being in danger. When feeling threatened a person will seek safety and security in whatever way is possible.
List them in your notebook
Tom Kitwood holds specific ideas relating to person-centred care and developed positive approaches to people with dementia which are discussed in his book ‘Dementia Reconsidered’. He challenged the medical model and identified a new approach to supporting people with dementia by focussing on ‘personhood’.
In recent years there has been increased recognition of how the attitudes and actions of other people, combined with their neglect, actively disempower those who have some kind of ‘difference’ and overlook their attempts at action and deny them a voice (Makin 1995). This is termed the ‘social model of disability’.
This began to be recognised to be occurring in a similar way with people with dementia. Kitwood (1990) took these ideas forward within research, making notes on episodes he observed in care settings and classifying them. The harmful and deeply damaging episodes he classified as ‘Malignant Social Psychology’.
Here are some examples of Malignant Social Psychology:
- Disempowerment A lack of recognition of a person’s abilities and opportunities are not given to allow a person to do what they can do.
- Objectification Treating a person as if they were an ‘object’ rather than as a person.
- Invalidation Not recognising the way a person might be feeling in response to what is happening.
- Infantilisation Communicating with a person as if they were a young child.
For further information on the approach: see the ‘Dementia Care Mapping’ section in chapter 16. Observation tools.
Impact of interpersonal interactions
What happens within an interaction has an enormous effect on how a person feels. Key messages are being communicated which can result in powerful feelings. For example if you feel a person is ‘talking down’ or ‘talking over’ you this can often result in feeling angry, upset, hurt, frustrated, humiliated or in many other strong feelings.
If this should happen regularly it can significantly affect a person’s mood and well being.
Social contact and stimulation
Looking at Maslow’s hierarchy of needs it is recognised that once the lower need is satisfied, a person focuses on satisfying the higher needs of love and belonging, self esteem and self actualization.
Kitwood (1997) also suggested this includes a need to be accepted as part of a wider group of people and having bonds with others. Being involved and contributing to a community whether that is family, friends, work or social situations heightens well being.
Observational studies of persons with severe cognitive impairment demonstrate that people with dementia, in common with all people, need social contact to feel they are loved and have stimulation within their life. However they often cannot recognise, express or resolve these needs independently and the environment does not always recognise or provide for these needs.
For research on need for social interactions within institutional care (Hubbard et al 2003).
Research on unmet needs, quality of life and support networks of people with dementia living at home (Miranda-Castillo et al 2010).
Living in the wider community
Many people with dementia are living in the community either with family or alone. Maintaining social and family relationships becomes increasingly difficult, and the quality of life for people with dementia is dependent on other people’s ability to understand the condition.
The education of wider society,families/carers is therefore vital in providing the necessary understanding and information about the disease in order to enable supportive approaches.
People with dementia who are living alone may have a different experience from people living with family or friends. Without people who are close enough to recognise changes and/or difficulties, the person might not receive a diagnosis until much later in the illness when risks are identified by neighbours or the wider community.
‘Living well with dementia – a National Dementia Strategy’ was published in February 2009 and was followed by Quality Outcomes for people with dementia: building on the work of the National Dementia Strategy (2010). These documents set out a vision for transforming dementia services highlighting the need to raise public awareness, amongst other key priority areas:
- Good quality early diagnosis and intervention for all.
- Improved quality of care in general hospitals.
- Living well with dementia in care homes.
- Reduced use of antipsychotic medication.
The word ‘personality’ comes from the Latin word ‘persona’, meaning ‘mask’. This suggests that personality is the impression we make on others – the ‘mask’ we present to the world.
When we talk about someone’s personality, we are talking about what makes that person different from other people. There are many theories of personality, but most share the basic belief that personality belongs to the individual. These theories suggest personality will play a part in how a person might respond to dementia.
People with dementia tend to retain the essence of their personality, however personality traits may become exaggerated. For example a mild mannered person might appear to be more reserved when affected by dementia. Some people however may show drastic changes to previously recognized personality traits, particularly those people when the dementia affects the frontal lobe.
May, Edwards and Brooker (2009), in their book ‘Enriched Care Planning for People with Dementia’ expand on this idea by advocating for the use of personality profiling for people with dementia in order to enable care to be tailored to their individual needs. For example, if you are able to identify a person who has the personality trait of shyness and is more likely to withdraw and a person who is more extrovert in their personality who is more likely to respond by confronting the situation, care plans can be constructed to work with the strengths of individuals with dementia.
Quiet, shy ………………………………………………………… Loud, extrovert
Circumstance and environment may cause you to re-consider where your ‘X’ goes at different times in your life but generally most people have their own individual response to strong emotions based on their personality traits.
For further reading in relation to the importance of personality in care planning for people with dementia the following book is helpful: May, H., Edwards, P. and Brooker, D. (2009) Enriched Care Planning for people with dementia: A Good Practice Guide for Delivering Person-centred Care. Bradford, Bradford Dementia Group Good Practice Guides. http://www.amazon.co.uk/Enriched-Care-Planning-People-Dementia/dp/1843104059
Changes to information processing and emotional responses
You may recall from Chapter 2 of workbook 2 where the different lobes of the cortex were described. (If necessary please revisit this section of workbook 2.)
Elizabeth Millwain (2010) described how important it is to have an understanding of different structures within the brain in order to develop an insight into the world of people with dementia.
Emotional responses come from the inner part of the brain which is more instinctive than the thinking (cortex) part of the brain. (The cortex of the brain was discussed in workbook 2). Primary emotions such as anger and fear are co-ordinated by a structure called the amygdala which is in this inner part of the brain and connected to the cortex.
When there is a situation that is threatening, the amygdala responds by sending messages to the body to react. This normal reaction is the body’s mechanism for survival and is sometimes referred to as the ‘fight or flight’ response.
A person with dementia can sometimes experience a misperception of what is being seen when responding to an environment that can be difficult to interpret. At these times the ‘flight or flight’ response may be activated.
Misperception of information
Powell, J. (2007) Difficulties in understanding
The amygdala is ‘kept in check’ by the cortex of the brain in particular the frontal lobe. For example, when we may feel like striking out at a person who has annoyed us, the frontal lobe helps to regulate the triggered feelings and decide on a more thought out way of responding..
The above could be represented by the following equations:
Feeling + Thinking = Behaviour
Amygdala + Frontal Lobe = Behaviour
When a person has dementia, they continue to experience life with associated feelings and emotions. Evidence for this can be seen in the range of emotional responses expressed both verbally and non-verbally even when they may not be able to communicate them clearly.
The person with dementia will experience emotions but the person may have less ability to regulate an appropriate response.
This could be represented by the following equation:
Feelings + difficulties with cognition = difficulty to self regulate behaviour
For example, when being supported during intimate care tasks the person with dementia may be unable to recognise why the help is needed or who is providing the help.
- Feelings: Extreme embarrassment / frustration / distress
- Cognitive difficulties: Difficulty to self regulate feelings
- Behaviour: shouting / hitting out at those people who are trying to be supportive
- Feeling frustrated at being unable to work out how to get dressed.
- Feeling embarrassed should a ‘stranger’ need to help you with intimate tasks.
- Feeling lonely, cold, tired, or hungry and not knowing how to get support to feel comfortable.
These feelings can be heightened when a person has dementia, and it can become increasingly difficult for them to regulate their expression.
The National Institute for Health and Clinical Excellence Clinical guideline CG103 on Delirium: diagnosis, prevention and management describes delirium as a ‘disturbance of consciousness or perception and confusion’. Delirium can have a sudden onset and symptoms can fluctuate. This can affect behaviour. The guidance also identifies that people with dementia are more at risk of developing delirium, and having delirium increases the risk of developing dementia. Some will have both conditions at the same time.
- Royal College of Psychiatrists (2010) Delirium leaflet. London, Royal College of Psychiatrists. http://www.rcpsych.ac.uk/mentalhealthinfo/problems/physicalillness/delirium.aspx
- National Institute for Health and Clinical Excellence (2010) Clinical guideline CG103. Delirium: diagnosis, prevention and management. London, NICE. http://www.nice.org.uk/nicemedia/live/13060/49909/49909.pdf
For some, in particular those people with a Lewy Body type dementia it is common to experience vivid hallucinations which are not the result of mis-perceiving the environment but are being created as a feature of internal changes to the brain.
A hallucination is an experience of any of the 5 senses that appears to the person experiencing it as real, but that reality is not shared by others. This can also lead to behaving in a different way to usual.
However it is important to ensure that the person actually is hallucinating and not just misperceiving information as this can lead to inappropriate use of medications.
A delusion is a belief that a person holds, despite evidence to the contrary, and is resistant to all reason. When people with dementia experience delusions, they may mis-understand what is going on in the present. They might believe that a carer is trying to poison their food or that a family member may be stealing money from their purse. Delusions can be frustrating and upsetting as they can affect how a person with dementia communicates with those around them.
Hallucinations and delusions are ‘very real’ to the person experiencing them.
The environment plays a key part in how someone feels. A number of factors about the environment may have a negative effect on a person with dementia including:
- The level of noise: a person may be sensitive to loud noise or may have particular preferences with types of music.
Considering the impact of the environment and noise
Powell, J. (2007) Difficulties in understanding.
- Lighting / heating: poorly lit or improperly heated areas can be disorientating or the source of discomfort.
- Lack of signs: this might disorientate a person as to which way to go to find the toilet or to determine which door is for the toilet.
- Layout: Poor layout of a room which does not allow for moving around.
- Number of people in a room: some people may become distressed when in company or when left alone for long periods.
Considering the impact of being left alone for long periods
Powell, J. (2007) Difficulties in understanding.
- Changes in routine, rushing.
- Lack of ‘comfort cues’ which are particular objects, pictures, pieces of furniture, photographs which help to link to past comfortable memories (see previous chapter).
Section 2 Practical solutions
People with dementia may spend long periods of time walking constantly either in a repetitive manner, for example up and down a corridor, or outside walking long distances. Sometimes the person may walk familiar routes or take new routes unknown to them.
This can present many significant concerns for carers regarding the safety of the person. For example where a person is walking up and down a corridor constantly, concerns can be around the risk of getting physically exhausted or falling. Where a person is walking outside, concerns can relate to risks of getting lost or risks associated with poor traffic awareness skills.
Walking is purposeful to the person though it may be difficult for the carer to find the reason. Often the walking is associated with a past lifestyle or occupation.
Consider reasons why?
Some possible triggers might include:
- The person is responding to a physical need:
- Looking to find and use the toilet
- Looking to find food/drink
- Feeling too hot or cold
- Stiff from sitting for long periods of time
- To relieve feelings of pain
- Feeling a sense of restlessness
- To relieve pressure areas (eg: elbows, sacrum)
- Exercising joints
- Life-long pattern – the person’s life history might indicate that the person has always walked (e.g. owned a dog).
- Response to past memories or previous roles – The person’s life history might reveal a work pattern that involved walking (eg postman).
- Searching for someone, security or familiarity.
- Needing to explore the environment.
- Opportunities to meet and engage with others.
‘Sundowning’ is a term that is sometimes used to describe walking or moving things in the late afternoon / evening. There are several theories which propose to explain why this occurs:
- Changes in natural daylight creating a trigger to move around.
- Feeling a need to be occupied at this time of day.
- As a response to a feeling of crisis.
Consider which psychological needs might be met through the person walking:
- Identity: Is it helping to uphold a person’s identity? A person may have always been active.
- Occupation: Is it providing meaningful or purposeful activity as a form of occupation?
- Comfort: Is it helping to comfort a person if he/she is able to relieve distress through walking?
- Attachment: Does it provide an opportunity for the person to meet up with others?
- Inclusion: Does it allow for a person to feel connected to their wider community?
What might help?
- Provide a secure environment using the least restrictive options available (e.g. monitored/alarmed doors).
- Use of assistive technology such as pressure mats etc.
- Provide for an obstruction-free environment as possible.
- Check for safe & comfortable footwear.
- Where needed provide supervision when walking.
- Discuss with family – outline risks and benefits to walking opportunities.
- Use colour, pictures and/or signs to orientate person to the environment.
- Use of identity information should the person become lost.
- Engage in reminiscence to connect with memories associated with past occupations.
- Reassurance and comfort related to past triggers.
How to respond when a person is responding to past memories
When a person is distressed and wants to go and find home – when ‘home’ is somewhere from the past, there is no ‘correct’ way to respond and communicate with the person. It is useful to think of using a ‘toolkit’ of potential approaches which might help:
- Reassurance and a gentle reminder of the current reality.
- Use of validation to identify and connect with how the person is feeling eg ‘I can see you are worried’.
- Use of reminiscence to engage with the person:
- Structured activities relating to past interests.
- Use of familiar soft toys or dolls as reassurance.
- Use of music associated with past preferences.
- Use of distraction in the form of:
- Food and/or drink.
- Aromatherapy (particularly lemon balm or lavender).
- Massage (hand or foot).
- Animal assisted therapy.
She is becoming increasingly agitated in the evenings when she insists on going home to see to the children.
When the care home staff respond in a reassuring manner explaining to her that she will be staying at the home she becomes further distressed and says ‘well that is nothing to do with me, the children are waiting so show me where it is’.
Task: In your notebook write down how would you care plan for this time of day for Mrs Street?
People with dementia may have occasions where to express their anger, frustration or distress they hit out at others either physically using their arms or legs or using implements, for example throwing cutlery. The person might also bite or pinch others. This behaviour is a way of expressing distress by the person with dementia. But it can be extremely distressing for those people supporting the person in a number of ways, both physically and emotionally.
Occasions where this happens can very often be associated with a particular time of day, or related to care tasks such as when a person is being supported with washing and dressing. At these times the emotions surrounding intimate tasks for both the person with dementia and those providing support and care can be heightened, and it is not unusual for difficulties to arise.
Consider reasons why?
- What might the person be feeling? There are many possible feelings associated with being supported with very intimate tasks: If the person is feeling:
This might be an expression of those strong feelings.
- What is the person experiencing? If the person is in an environment where it is difficult to hear what is being said or to see clearly what is happening this might be a reaction to feeling disorientated. The person might also be in pain.
- What approaches are being used? If the person is being rushed for example this could create a feeling of panic.
- Are there any cultural differences for example diet, clothing or rituals?
Complete the learning record and the quick activity.
What might help?
For situations where a person may be hitting out there are specific strategies that can be learnt to know how to position your body and move in ways which prevent as much harm as possible to yourself and the other person. Learning these techniques and practising them can build confidence in knowing how to physically respond to a situation. (This workbook is not a substitute for learning these techniques and courses for learning these techniques for example ‘Positive Behaviour Management’ are available in different forms). NB: It is important to be aware of potential triggers to enable the use of de-escalation strategies which may avoid a person physically hitting out at others.
General points to consider when responding to the person who is demonstrating angry behaviour
Become aware of your own body language:
- Be aware of body distance, posture, personal space.
- Stay calm…your non-verbal behaviour will show how you feel so try and relax your muscles.
- Check the person’s non-verbal cues. Don’t approach unless safe to do so.
Think about how you are responding:
- Show you are listening.
- When there is an opportunity, speak in a calm manner and tone.
- Try not to take things said personally: Know that person is upset – not with you, but with their understanding of what is or is not happening.
- Do not argue.
- Do not criticise.
- Do not tell the person off.
Think about the environment:
- Be aware of noise levels.
- Be aware of space.
- Be aware of other people.
- Be aware of your escape routes should you need them.
- Be aware of potential weapons. For example a walking stick.
Looking after yourself – when the incident is over:
- If needed take a break.
- De-brief: Talk about the incident confidentially with a colleague or your manager.
- Remind yourself you are doing your best for the person.
Identifying any underlying cause / triggers:
- Are there any patterns/themes to the behaviour?
- What might be being triggered from strong emotional memories or previous experiences?
- Has the person got a physical problem that needs addressing?
- How is the person’s mood – low and upset?
- Has the person had a reaction to any medication?
- Has something someone said distressed the person?
- Is the person hot, cold, hungry, thirsty etc?
- Is the person in pain?
- Is the person’s cultural or ethnic needs being met?
When a person is angry and distressed there is no ‘correct’ way to respond and communicate with the person. It is useful to think of the following as a ‘toolkit’ of potential approaches which might help;
- Calm and clear messages about what you need the person to do.
- Use of validation to identify and connect with how the person is feeling eg ‘I can see you are upset’.
Use of distraction such as finding something for the person to focus on or walking or other forms of exercise.
He has a mixed diagnosis of Alzheimer’s Disease and Korsakoff’s Syndrome. He is taking Aricept medication. His nephew who lives 50 miles away is both his financial and welfare attorney and visits him every other month. He had concerns that Mr Bevan was not eating or managing his hygiene needs from observing he is losing weight and that there is little evidence when he visits of adequate personal care. Mr Bevan denies he is having any difficulties but his nephew has made the decision in his ‘Best Interests’ to organise for carers to visit to support him with these needs. Carers are visiting Mr Bevan each morning to provide a full English breakfast which he has always had as a main meal all his life, and as was his lifelong pattern, to encourage him to bath and change his clothes once a week. Mr Bevan is accepting of the breakfast call but is known to get angry when carers approach him to provide support with personal care tasks.
Task: 1. In your notebook write down any thoughts you might have about why Mr Bevan might be behaving in this way?
2. In your notebook write down any strategies which you think might be helpful?
Task: Consider what you would do or how you would respond if you were a member of staff in this nursing home.
Write down your responses in your notebook.
When the woman suddenly dies, her medical record is reviewed. It is discovered that five years ago, her ovaries were surgically removed due to cancer. Post-mortem examination reveals widespread spread of the disease. At the time of her death she had no prescribed painkillers (analgesics).
Note any thoughts from this further information. Would you respond differently had you known this?
Comment: This is a real case that was reported to the Swedish National Board of Health and Welfare (International Psychogeriatric Association, 2007). The woman was labelled as being ‘disturbing’ by the nurses and even though systematic observations were made, the nurses did not recognize the signs of pain.
Consider reasons for vocally disruptive behaviour?
Some people with dementia may suddenly begin to swear when upset, insult family and friends for no obvious reason or start shouting and be verbally aggressive. Other difficulties can be loud noise making – this is persistent vocalising which is often unintelligible and resistant to requests for silence such as yelling, groaning, disruptive talk and calling out.
It can be difficult to tolerate, however it should not be seen as a nuisance and ignored and isolated as there is usually a cause through an unmet need.
For example verbal/vocal behaviours have been shown to increase in frequency when nursing home residents were alone and decreased when with others or staffing levels increased (Cohen-Mansfield and Werner 1995) suggesting loneliness or need for social contact may be at the root of verbal or vocal behaviours that distress others.
Possible causes may be unmet physical needs such as:
- Needing to go to the toilet, constipation, incontinence.
- Feeling too hot or too cold.
- Physical discomfort due to sitting or lying position.
- Limited freedom of movement.
For some people who experience hallucinations this can lead to them responding to the images/people that are real to them.
Calling out may be the only way that the person is able to communicate sadness, frustration or distress. Vocal disruption may indicate;
- Anxiety – the person may be seeking comfort.
- Feelings of anger, frustration, resentment, hopelessness etc.
- Feeling abandoned and calling out for someone indicates feelings of insecurity. Sometimes people with dementia cannot recognise faces and this may heighten feelings of aloneness.
Over stimulating environment – an environment that is cluttered and noisy will lead to agitation, irritability, stress and confusion not only for the person but also for carers and families. Unpleasant aromas can add to a person’s distress and agitation. Also if the person feels they are being bombarded with questions.
- Lack of stimulation or social contact – if the only contact patients have with staff is when they are providing specific and basic nursing care then people will become distressed and feel isolated and lonely. Sensory deprivation through poor sight or hearing can also lead to lack of stimulation. Shouting often occurs at night if the person is lying awake in a frightening silence.
- Not being able to see and watch what is going on around can contribute to a person’s sense of isolation, loneliness and fear.
What might help?
Look for underlying reasons of what might be causing the shouting and for any patterns with the behaviour For example, if someone always starts yelling when you sit them in a certain chair, they may do so because they are uncomfortable, don’t like the people around them, can’t see what’s going on around them, can see too much of what’s going on around them etc.
One to one social contact and communication-based activities related to the person’s past interests have been shown to reduce significantly verbal disruptive behaviours and agitation, resulting in an improved quality of life for the person with dementia.
Interventions really depend on the cause. Remember there is a reason.
Other ways to help can be:
- Distract the person by introducing other enjoyable activities.
- Increase social contact and meaningful activity based on past history and occupations. For example, if the person with dementia enjoyed housework encourage them to help fold the laundry or place a basket of towels and dusters in their room. Encourage a walk in the garden if this was an area of interest.
- Talk to the family and friends
- Use sensory techniques such as massage; provide visual cues through touch.
- Encourage light exercise.
- Encourage the family/friends to create a video of conversations and reminiscing about special events, or a memory book of photographs and special memories to help with conversation.
- Calm the environment down if over stimulation: lower lighting, turn off loud music, take to a quieter environment etc.
- If under stimulation may be the cause increase stimulation eg singing, a gentle hand massage, take to a busier place such as a lounge room.
- Communicate continually with the resident during the task at hand.
- Provide adequate meals/snacks/fluids to prevent hunger and thirst.
- Initiate an individual toileting regime and change promptly after incontinent episodes.
- Allow/encourage rest periods to prevent fatigue.
- Provide frequent positioning changes/massage for people who are immobile.
- Check environment and maximise cognitive capacity through orientation cues such as notes, signs, diagrams, calendars and personal items of significance.
- Consider language barriers
Think about different settings eg a care home, a busy hospital ward and what sounds and smells may be present. Make a note in your workbook of how you could change the environment to make it more comfortable for people with dementia.
People with dementia may repeat a sound, a word, a question or may repeat the same actions. They may also become very physically dependent and ‘clingy’ and follow the person caring for them.
The person with dementia may be disorientated or confused and the behaviour may be a way to comfort or soothe them. Sometimes they may engage in a repetitive activity with purpose such as packing and unpacking or continuously rearranging furniture. Often these repetitive behaviours are related to a former activity or occupation.
Other possible causes include:
- Short term memory loss from the dementia causes the person not to remember that they have asked the question.
- Depression, anxiety or pain.
- Some medication can cause side effects which result in repetitive movements or restlessness. Anti-psychotic medication can cause repetitive movements of mouth and tongue.
- Separation from a loved one or care giver may lead to concerns and questioning where they are.
- Anxiety from misrepresentation of sounds and sights or overwhelming stimuli (movement or noise etc).
- Getting stuck on one activity and not able to move to next step due to frontal lobe damage of the brain.
- Inability to express needs such as hunger, thirst or needing to go to the toilet.
What might help?
When someone is repeating a question over and over try to respond to the underlying emotion rather than the content of the question. ‘What am I doing today’ may mean the person is feeling lost and uncertain and a response to this feeling might help reassure them. ‘Where is my wife’ may suggest a need to be secure or need for intimacy. ‘Where are my children’ may suggest a need to be loved or needed. ‘When can I go home’ may suggest a need to feel safe.
Try to use a calm voice when responding to repeated questions and do not remind the person they have asked the question. Instead divert them to another activity.
Try writing answers to questions on a reminder pad to help the person remember.
Keep routines consistent and try not to discuss plans with the person ahead of time which may increase anxiety and repeated questions. Leave it until just before event.
Look for patterns in the behaviour (note the time of day, event or people who trigger the behaviour). Once the pattern is identified then it is easier to remove any triggers.
Sometimes certain things in the environment may trigger repeated questions. For example a coat and hat in a visible place may make the person ask repeatedly to go outside.
Repetitive movements may be reduced by giving the person something to do with their hands eg pairing socks, folding clothes, tearing up paper, sanding or dusting.
When a person becomes stuck on one task, touch or pointing may help cue the person onto the next step. Or use other positive distraction approaches such as music or pictures.
Check with the doctor to be sure that medications are not the cause of repetitive behaviours.
Provide stimulation and meaningful activities to alleviate boredom.
Ensure physical needs are met. Explore any need to go to the toilet, any pain, hunger or thirst etc.
In your notebook write down a variety of different approaches that might have helped.
- SCIE Dementia Gateway on Repetition http://www.scie.org.uk/publications/dementia/difficult/repetition.asp
- Alzheimer’s Society factsheet on unusual behaviour http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=159
Sexual interest and capacity to enjoy sex are not lost with old age however the cultural expectation is for older people to become asexual. Therefore when confused people exhibit sexual needs our response may be shadowed by our own prejudices and values.
As the brain is the ‘control centre’ for behaviour and emotion, this determines sexual feelings, good manners and inhibitions. This means that in a person with dementia, sexual feelings can change unpredictably and sometimes inhibitions related to sex can be reduced.
For example of all the people with Alzheimer’s type dementia:
- 87% will experience decreased sexual activity
- 13% will experience increased sexual activity
- A minority will exhibit a decreased sense of decency or do embarrassing things
(Derouesnee et al 1996)
Sometimes a person with dementia may appear to lose their inhibitions and make sexual advances to others or undress or touch themselves in public. Sometimes they might make sexual advances to someone who they mistake for their partner and this can be staff or other family members. Although sexual disinhibition is a relatively infrequent problem it can have a disproportionate impact on staff and carers.
Sexual expression from a person with dementia may be a straightforward expression of sexual needs and staff can give sensitive support to help people express their sexuality appropriately. But there are many other possible reasons for behaviour that seems sexual. For example:
- A person might be expressing a need for closeness and comfort.
- A person might be indicating that they feel bored or physically restless.
- A person who seems to be exposing themselves might be indicating a need to go to the toilet or that they are too hot.
Identifying needs that the person is communicating through apparently sexual behaviour is very important, because we may be able to meet many of these needs – for example by helping the restless person get some physical exercise or by providing the comfort that someone is missing.
Managing sexually inappropriate behaviour depends upon the intent of the perpetrator and the perception of the receiver. Effective management depends upon staff maintaining the resident’s dignity and responding to their behaviour calmly and objectively. Management will also depend on what ‘gains’ the person is getting from this behaviour. The impact of this behaviour on the person/people who are affected by, or the subject of this behaviour needs to be considered, and handled sensitively.
What may help?
Staff may have a key role to play in assisting people with dementia to express their sexuality and need to respond with sensitivity and empathy respecting people’s feeling and their dignity. In particular, staff should be aware that they need to compensate for difficulties that have arisen due to symptoms of the dementia. For example:
- Establish if masturbation or sexual fondling are a need for sexual gratification. Provide privacy and quietly redirect the person away from public areas. Maintain the person’s dignity. For example if a person exposes themselves or begins to masturbate in the lounge of their care home, a staff member should discreetly advise the person to go to their bedroom, and guide them there if necessary.
- If a person mistakes another member of their day centre for their spouse, staff may need to gently remind them who the person is and let them know when they will be seeing their husband or wife.
- If a person has misunderstood the situation for example when a carer is helping them with intimate personal care, and they then believe that they are having a sexual encounter, the carer needs to calmly explain the situation to the person and be aware that this person may need frequent reminders during personal care of exactly what’s happening.
- Recognise that behaviour may not be sexually directed but may be a result of infection (e.g. urinary tract infection or thrush); or pain which needs to be investigated by a doctor.
- Establish toileting routines; provide orientation cues to toilet
- Check if the person has discomfort: for example are they disrobing due to tightness of clothing or because they are too hot?
(adapted from SCIE 2011)
- International Longevity Centre, UK (2011) The last taboo – A guide to dementia, sexuality, intimacy and sexual behaviour in care homes. London, ILCUK. http://www.ilcuk.org.uk/files/pdf_pdf_184.pdf
- Social Care Institute for Excellence Responding sensitively to situations involving sexuality. http://www.scie.org.uk/publications/dementia/difficult/sexuality.asp
- Alzheimer’s Society (2010) Sex and dementiafactsheet. London, Alzheimer’s Society. http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=129
Section 3 General ways of supporting
People with dementia struggle to communicate, and this affects how others communicate with them. In approaching and supporting the person it becomes important to use the opportunity to uphold and promote a person’s well being.
Connecting with the person at any opportunity and when engaging in any care tasks
This can be achieved by making eye contact or talking with/to the person. If the person feels ignored or handled insensitively it could result in the person feeling as though they do not exist as a person but rather as a ‘task’ to be done to. This could lead to ill being.
Talking to the person in a way that is appropriate for their age and status
This can be achieved by addressing the person by the name they prefer to be called and avoiding talking to the person in the way you might talk to a child. When a person is having difficulties with everyday tasks it is important to remember that the person is not a child and language/ tone of voice need to reflect this to promote the person’s sense of identity and dignity. For example ‘You are a good boy’ when said to a 75 year old man with dementia who has washed and dressed could lead to him feeling belittled or ridiculed.
Talking calmly and with empathy when a person with dementia is having difficulties
This can be achieved by allowing for a relaxed pace with both speech and actions when communicating with the person and allowing a person to express how they are feeling which will help to validate feelings.
If a person is shouted at or blamed when struggling with tasks this will lead to ill being.
In workbook 1, chapter 5 and workbook 2, chapter 6 the importance of life history work was discussed. Finding out about a person may need exploring in an ongoing way rather than a ‘task’ to be completed in a ‘session’.
Some of the ideas as to what to include can be to use specific formats. For example the ‘Clipper Questionnaire’ by purchasing Care to Communicate: Helping the Older Person with Dementia (Powell, J. 2000) or gathering information using headers from a variety of sources for example the Alzheimer’s Society ‘This is Me’ leaflet. When trying to find out about someone’s life history it is important to consider their cultural, ethnic or spiritual background.
When thinking about having a positive environment for a person it is essential to consider a variety of factors:
- What are the person’s past wishes and preferences regarding spending time in company?
- What is the person’s present response to being with others?
- Are individual comfort cues available for the person such as favourite pieces of furniture/blankets?
- What objects are available to touch/hold that might be engaging /comforting
- What is the background noise and how is the person responding to this?
- Are there opportunities for the person to move around should they wish?
- Are there clear signs to direct the person to the toilet?
- Is there the opportunity for the person to access food and/or drinks?
There have been a number of studies which suggest the person with dementia can be helped by the use of colour in the environment. This had led to, in particular, the specific use of red and orange. The ‘red jug scheme’ is used in some hospitals and care homes to encourage the person with dementia to drink by supplying a red jug and tumbler. Other ideas include use of red toilet seats or painting the doorways of toilets red.
Evidence based research from Australia (Gohar, 2009) considered the application of colour and colour contrast in the home environment of the elderly and visually impaired individuals. The conclusion was that the use of colour and colour contrasts specifically was found to be effective, not only for improving vision and clarity of the environment, but also in promoting better orientation, memory enhancement, a sense of safety and independence.
- Gohar, N. (2009) The application of colour and colour contrast in the home environment of the elderly and visually impaired individuals. Sydney, Home Modification Information Clearinghouse. http://www.homemods.info/files/EBR_Colour_Final.pdf
- Dementia Services Development Centre, University of Stirling. Information on living spaces. http://dementia.stir.ac.uk/design_livingspace
- Dementia Care Australia ‘Colour your world … and theirs’ article. http://www.dementiacareaustralia.com/index.php/library/colour-your-worldand-theirs.html
There are various different observational tools with the most recognised being ‘Dementia Care Mapping’ and ‘SOFI’ (Short Observational Framework for Inspection). Also a new Person, Interaction, Environment (PIE) observational method is being piloted for use in general hospital wards. The South West Regional workforce network are developing an accepted tool for use across the region.
- For information on ‘PIE’ see http://www.rcpsych.ac.uk/quality/quality,accreditationaudit/nationalauditofdementia/auditstructure/observationalmodule-pie.aspx
Dementia Care Mapping
Tom Kitwood’s work is epitomised through his approach of identifying ‘well being’ and ‘ill being’ with the use of Dementia Care Mapping (DCM) http://www.brad.ac.uk/health/dementia/DementiaCareMapping/. DCM is an observational tool which provides a format for observing and recording life through the eyes of a person with dementia. It involves watching people with dementia and those people interacting with them over an extended period of time to make a judgement on the person’s mood and engagement alongside how the person is occupied.
Also, as part of the mapping any interactions which are ‘personal enhancers’ and any which are ‘personal detractors’ are recorded and reported back to staff. Personal detractors are communication interactions which lead to ‘ill being’, and Tom Kitwood describes these as examples of ’Malignant Social Psychology’.
The aim of DCM is to provide a focus for feedback to staff and offer recommendations around person-centred practice.
- Sanderson, H. et al (2010) Person centred thinking to implement dementia care mapping. Stockport, Helen Sanderson Associates. http://www.helensandersonassociates.co.uk/media/38803/usingpcttoimpelementdementiacaremapping%20(2).pdf
The approach advocated in this work provides a structured format for feeding back DCM recommendations, from a mapping exercise, to care staff.
In the 1960s Naomi Feil developed an approach which she called ‘validation therapy’. This started to focus on the emotions and feelings of the person with dementia and gave credibility to the experience of the person as being paramount. Using validation is to hold less regard for the content of a person’s speech, for example the facts of what is said, and instead to link with how a person may feel through a person’s tone of voice and their body language.
For example it is usually clear when someone is feeling angry, upset, frustrated or distressed without the person using words to express this. Once there are clues as to how a person may be feeling validation therapy looks to respond to these feelings. For example: ‘I can see you are feeling upset’ (or whatever the emotion is)
Make notes in your workbook of what you have learnt from watching this.
When a person has dementia it has an effect on all members of the person’s family and friends. Working closely with a person’s relatives and friends is therefore vital. Sometimes this is described as a ‘relational approach’.
Ways to engage positively with a person’s relatives and friends might be to:
- Provide knowledge and information about dementia
- Actively listen to concerns expressed
- Provide regular updates about any changes for the person
- Encourage participation in care planning where possible
- Involve families and friends in the development of a life story book and learn about the history and life of the person with dementia
- Provide information about any support networks for relatives of people with dementia
- Ensure people know about their rights relating to benefits , carers assessments, advocacy etc
Task: Download Chapter 7 ‘The needs of carers’ from The Nuffield Council on Bioethics (The Nuffield Council on Bioethics, 2009)
From reading this chapter write in your notebook the 4 most frequently reported problems associated with caring that carers of people with dementia, stroke and Parkinson’s disease report (see section 7.3).
In workbook 2 antipsychotic medication was discussed. There has been much focus on how and when antipsychotic medication for people with dementia is used. Several studies have highlighted concern and indicated significant risks relating to their use.
There have been many non pharmacological interventions described throughout this workbook. You will remember that anti psychotic medication should be considered only once all other non pharmacological interventions have been considered. (refer to NICE Guideline at www.nice.org.uk/guidance/TA217)
In 2009 an independent clinical review of the use of anti-psychotic drugs was published (Banerjee 2009). Several recommendations came from this report including:
Recommendation 7: There is a need to develop a curriculum for the development of appropriate skills for care home staff in the non-pharmacological treatment of behavioural disorder in dementia, including the deployment of specific therapies with positive impact.
- Professor Sube Banerjee. (2009) The use of antipsychotic medication for people with dementia: Time for action. A report for the Minister of State for Care Services. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_108303
The STAR initiative was developed by Cornwall and Isles of Scilly Primary Care Trust, Royal Cornwall Hospitals NHS Trust and Cornwall Care in 2010. It was developed in response national and local recognition of the overuse of medications prescribed to people with dementia and the impact that these drugs may have on physical health and quality of life.
It provides an educational toolkit aimed at reducing the use of inappropriate medication in people with dementia. Within this information there are practical observation tools and a ‘3 monthly’ checklist to review, monitor and reduce the prescribing of medication
- NHS Cornwall and Isles of Scilly (2011) Cornwall leads on reforming care of dementia patients (Press release). http://www.cornwallandislesofscilly.nhs.uk/CornwallAndIslesOfScillyPCT/MediaCentre/NewsArticles/050411Cornwallleadsondementiacare.aspx
Acetylcholinesterase (AchE) Medication and Memantine
These medications do not ‘cure’ dementia but in certain cases can help to slow down the rate of progression of the illness.
In March 2011 a review and re-appraisal of donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer’s disease resulted in a change in NICE guidance. Specifically:
- Donepezil, galantamine and rivastigmine are recommended as options for managing mild as well as moderate Alzheimer’s disease, and
- Memantine is recommended as an option for managing moderate Alzheimer’s disease for people who cannot take donepezil, galantamine or rivastigmine and as an option for the later stages of Alzheimer’s disease
- Alzheimer’s Society leaflet on treating and caring for people experiencing challenging behaviour and how to reduce the use of antipsychotic drugs http://alzheimers.org.uk/site/scripts/download_info.php?fileID=1133
- NICE Guidance – Donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer’s disease (technology appraisal guidance TA217) www.nice.org.uk/guidance/TA217
1. What is the structure called which co-ordinates primary emotions such as anger and fear?
2. What kind of triggers may result in strong feelings and emotions? Name 3.
3. ABC charts provide a way to chart what is happening over a period of time for a person. What does ABC stand for?
4. Some long-term memories are ‘stronger’ and easier to recall than others.
Name them and give examples:
5. Name 3 ways during an interaction with a person who has dementia that you can aim to uphold the person’s well being.
6. What are the 2 key questions to consider when interpreting behaviours that challenge us?
7. A person’s relatives should not be involved in care planning for the person’s needs as the relatives often become over involved.
8. When a person with dementia is walking for long periods select the appropriate response.
1. The person needs to be prevented from doing so due to risk of falls
2. The person needs a risk / benefit assessment
3. The person should be kept in a very restricted area
4. The person should be watched at all times
9. Name two physical and two psychological reasons a person with dementia may be restless and walking excessively.
10. Name 3 things you should not do when a person with dementia is angry?
Thank you for completing this workbook.
The dementia e-learning programme, produced by the Social Care Institute for Excellence, is suitable for care staff and family carers. SCIE’s dementia gateway provides practical tips, tools and activities that will help you with your daily work.
This workbook has been based on the Dementia Training & Education Strategy model and resources for Gloucestershire, and adapted by the South West Development Centre on behalf of the South West Dementia Partnership for wider dissemination and sharing.
Written by Tina Kukstas, Dementia Training Solutions, supported by an Advisory group:
- Diane Bardsley, South West Development Centre,
- Jan Ellis, Gloucestershire Primary Care Trust,
- Rebecca Hardwick, South West Development Centre.
This process has taken place in consultation with the Regional Dementia Workforce network with comments from:
- Paul O’Shea, Plymouth PCT
- Nick Thorne, South Gloucestershire Council
- Diane Johnson, Dorset HealthCare University NHS Foundation Trust
- Mary Dart, Devon County Council
- Sue Ives, PHNSHT
- Karen Grimshaw, Plymouth Hospitals NHS Trust
- Jane Rachael, Capita L&D
- Paul Hopkins, STAR Team Bristol
- Lindsey Pike, Cornwall Council
- Mark Humphries, Dorset PCT
- Nic White, Plymouth NHS
- Belinda Lock, Devon County Council
- Jet O’Neill, North Bristol NHS Trust
- Elizabeth Bartlett
Grateful thanks to all involved for their inspiration and enthusiasm.