Sunshine Care Training Sarah Yorwerth & Tara Hollinshead

Sunshine Care Training Sarah Yorwerth & Tara Hollinshead “Yes, I remember that day as clear as can be… But what the hell did I do this morning?”

Our Behaviour- good, bad or indifferent- is a clear expression of our feelings and needs. It is a form of communication and is demonstrated in a myriad ways. Memory, concentration and the ability to reason things out or make sense of what is happening are often impaired in people with Dementia. There are many forms of behaviour that can challenge you when caring for a person with Dementia. It makes you feel uncomfortable, unsure of how to deal with and can even upset you. Remember- do not take it personally!

Types of Dementia Alzheimer’s Disease Accounts for 60-80% of all cases. 1 in 6 people over 80 have this type. Struggling to remember names and recall recent events. Impaired judgements, disorientation, confusion, behavioural changes. Struggling to speak, swallow or walking. Build up of protein (amyloid plaque) or tangles of tau in the brain. Fronto-Temporal Dementia. Accounts for 10% of all cases. Causes difficulties with language, behave inappropriately, lose interest quickly or sympathy. Damage to front and side part of the brain.

Vascular Dementia Second most common type of Dementia. Struggle with the speed of thinking, concentration becomes difficult and communication. May suffer with depression or anxiety. Memory may still be quite good. Decrease in blood flow and the result of mini-strokes (TIA’s) which causes death of brain cells. Dementia with Lewy bodies. Causes changes in Alertness and severity of cognitive impairment fluctuates. Can cause hallucinations, muscle rigidity and tremors. Failure to see objects in 3D. Can also cause difficult with balance and movements. Deposits of protein that form inside the brain.

Have you experienced: Aggressive behaviour? May be physical/verbal Trying to leave the house unaided Refusing to allow you to help Pacing up and down- “wandering” Repetitive behaviour Rummaging Telling you to leave the house. “Where’s my mum/dad” “I ned to pick the children up” “I’m late for work” “I want to go home”

Aggression • Dementia can have a big impact on a persons behaviour. • The feeling of being anxious, lost, confused and frustrated. • These can be very scary and upsetting, for both of you. It can be distressing to see such a change in personality. • There may be times of: • Fear and Humiliation • Frustration with a situation • Depression • Not other way to express their feelings, • Loss of judgements • Loss of inhibitions and self-control. • Swearing, screaming, shouting, making threats. • Hitting, pinching, scratching, hair-pulling, biting

Aggression • People with Dementia have the same needs as everyone else, including comfort, social interaction, stimulation, emotional wellbeing and being free from pain. • But what if your Service User cannot communicate these needs? • What if they cannot understand them? • If your Service User is bored or not getting any stimulation? • They may wander, pace up and down, follow you around. • Biological Reasons: • They may be in pain, illness or infections, are they comfortable in that chair? • Side effects of medication- They may be confused and drowsy, could cause Irritability. • The environment- Is it new? Could it be too hot, too cold, noisy or too bright? • Poor Eyesight or hearing- This could lead to misunderstandings or misperceptions. • Hallucinations- Can they see things that you cannot see? Do they believe things that didn’t happen? It could cause them to be defensive. • Have they lost the inhibitions to act appropriately?

Aggression Social Reasons: • Lack of Social contact and Loneliness. • Boredom, inactivity and sensory deprivation. • Different carers coming in with a different approach or changing the routine • Not liking or trusting a particular carer. • Trying to hide their condition from others. Psychological Reasons: • May believe their rights are being infringed, or they are being ignored. • Memory difficulties-mixing up short term and long term memories • Frustration at completing tasks e.g. Making a Cup of tea. FAIL. • Personal Care, may be seen as threatening or invasion of personal space. • Carers Stereotyping- thinking they are unable to do things independently. • A strange environment, wrong place? What are you doing here. • Change of personal routine- its time to collect the children from school, if prevent them to do so, could cause challenging behaviour.

Tips Know your Service User! • Adapt- It is important to understand the reasoning or logical arguments are unlikely to result in insight and change the persons belief. • Take a deep breath, step back, and take time out. • Try to stay calm, avoid potential for confrontation. Let them talk. • Try not to show fear, alarm or anxiety- it could increase agitation. (Easier said) • Try not to shout or initiate physical contact- it could appear threatening. • Acknowledge the reason. • 9/10 its not you! It’s the situation. • Listen to them, (consider your body language) • Maintain eye contact. • Try to find out the cause. • Whatever you need to do, can this be done later, in a calmer environment. • Do not punish the person for their behaviour.

Problem Solving Is there a pattern in this behaviour? Does it happen in the same situation, time of day? Defining the problem: • Is it the behaviour of the person with Dementia causing the problem? • Is it the reactions or attitudes of others? • Is it the living situation. • What are the other factors? Pain? Boredom? Is the environment suitable? The Situation: • Look at all the circumstances that might be contributing to the problem? • When and where does the problem happen? • Does the person always act the same way in the same place? • Does it always happen with the same person or circumstance. • Who are the others involved? Visitors, family, certain uniforms?

Problem Solving Assess the person: • Unwell, in pain, uncomfortable? • Overtired, overstimulated, bored, anxious or frustrated? • Embarrassed, ignored, misunderstood, feeling patronised? • Delusional, having hallucinations or depressed? • Under-stimulated, lacking in social contact? • In a suitable environment? Use what you know about them. • An unpleasant incident or association. • Change • A memory • Provocation or personality conflict.

Problem Solving Look for behavioural signs that a person could be in pain or discomfort: • Rubbing or pulling at a particular body part. • Facial expressions- looking scared or clenching their teeth • Body language- are they huddled or rocking • A change in appetite • Restlessness • New swellings or inflammation • Temperature Causes could be: • Infections- Chest Infections or UTI’s • Existing injuries such as cuts or bruises • Constipation • Existing conditions such as arthritis • Being in an uncomfortable position • Toenails or finger nails need cutting. • Tooth ache, denture problems or ear ache.

Example: Statements such as “I don’t want to take a shower!, “I want to go home”, “I don’t want to eat that” Explanation: The most important thing to remember is, this behaviour is not intentional. Aggression is usually triggered by something- often physical, environmental factors such as an unfamiliar situation. “A lot of times, aggression is the result of fear” “People with Dementia are most apt to hit, kick or bite” is response to feeling helpless. DO: Try identifying the cause, what are they feeling? Some people don’t like being fussed over, trying to calm someone down can cause more agitation. DON’T: “The worst thing you can do is engage in an argument or force and issue that’s creating the aggression. The biggest way to stop aggressive behaviour is to remove the word ‘no’ from your vocabulary”

Example: “I want to go home”, “This isn’t my house”, “When are we leaving, why are we here” Explanation: Wanting to go home is one of the most common reactions we face. Remember that Dementia causes progressive damage the cognition. “Often people are trying to go back to a place where they had more control in their lives” DO: There are a few possible ways to respond. Simple explanations along with photos and other tangible reminders can help. Sometimes at can be better to redirect. Find another activity, go for a walk etc. “When are we leaving” Try responding with “We cant leave ‘til later because… ‘the traffic is terrible, bad weather, its too late’”. DON’T: Lengthy explanations or reasons are not the way to go. “You cant reason with someone who has Alzheimer's or Dementia” Sometimes it can trigger the response because of the questions we’re asking.

Repetitive Behaviour • People with Dementia often carry out the same activity, make the same gesture, or ask the same question repeatedly. Medical professionals sometimes call this ‘Perseveration’ • This could be due to memory loss or even boredom. • Asking the same question over and over- • As well as memory loss, this can be due to feelings of insecurity or anxiety about being able to ‘cope’. • Be tactful- try to encourage them to find the answer for themselves. • E.g. What is the time? • Place the clock next to the person, or in view. This could diffuse anxiety. • They may even be anxious about future events such as a visitor arriving, or their next care visit. • Repetitive phrases or movements- • This can be due to noisy or stressful surrounds, or boredom. Encourage activity, or go for a walk. • Could also be a sign of discomfort, too hot/cold, hungry, thirsty or constipated.

Repetitive Behaviour • Repetitive actions- • Actions such as repeatedly packing or unpacking a bag, rearranging chairs in a room. • This may relate to formed activity such as travelling or entertaining friends. • This may serve as a basis for conversation. • This can signal a sign of boredom. • Repeatedly asking to go home- • It can be a sign of anxiety, insecurity, fear or depression. • The concept of ‘home’ might evoke memories of a time or place where the person felt comfortable or safe, or family and friends in which are deceased. • Reassure the person that they are safe. • Multiple phone calls- • Some people with Dementia phone their relatives over and over again, particularly during the night. This can be very frustrating and distressing. • The person with Dementia may forget that they have already called, or may be insecure or anxious.

Restlessness • Some people with Dementia experience general restlessness. This can be a sign of hunger, thirst, constipation or pain, or the person may be ill or suffering from medication side-effects. • This could also be boredom, anger, distress or anxiety, stress due to noisy or busy surroundings. • It may also be due to the changes in the brain. • Pacing up and down- • Pacing may indicate the person wants to use the toilet. Try leading them towards it. • If they are adamant they want to pace, try to find a safe place. They may want to get some fresh air, especially if they were an active person. • Help to chose comfortable shoes, offer drinks and snacks, check feet regularly, and encourage rest where possible. • Fidgeting- • Someone with Dementia may fidget constantly. Try to distract attention and offer reassurance. Try giving something to occupy their hands, like a soft toy or worry beads, or providing a rummage box containing interesting objects.

Rummaging Box. • This can help relieve stress, curb anxiety and prevent long periods of boredom! • What to put in? • Buttons on string • Embroidered handkerchiefs. • Gloves • Sponges • Comb or brush. • An old watch • Beads • Plastic Spoon • Pennies • Ribbon • Photographs • Small ornaments • Bell • Pegs ^ Or try this.

Shouting & Screaming • The person with Dementia may call out for someone, shout the same word, scream or wail over and over again… • They could be in pain or ill. Having visual difficulties or hallucinations. • May feel lonely or distressed, is their short term memory is damaged- they may forget you are in the next room and believe they are alone. • They may be worrying about their failing memory, or stressed by noise levels. • If the person shouts at night, a nightlight may provide reassurance. • Consider how the room looks in the dark. Are there shadows or shapes that cannot be seen when the light is on, and may look frightening. • If they are calling for someone from the past, try talking to them about this period in their life and response to the feelings the person is showing. • Avoid the harsh facts that may cause distress- if the person they are asking for has died, they may not remember this fact and will feel they are hearing it for the first time.

Lack of Inhibition • The person may behave in a way that other people find embarrassing due to failing memory and general confusion. • Some people may undress in public, have forgotten when and where it is, appropriate to remove their clothes. • If this happens, take the person somewhere private, and check whether they are too hot or uncomfortable, they may need the toilet. • Showing Sexually inappropriate behaviour- this could be due to damage to the part of the brain that allows us to recognise acceptable social behaviour. • If this happens, try to discourage tactfully and distract their attention. It is important to remember that having Dementia does not mean a person no longer has physical or sexual needs. • Behaving rudely- e.g. Insulting people or swearing or spitting. • Do not attempt to correct the behaviour. Try to distract their attention and explain to other people that it is due to their condition.

Night time walking Many people with Dementia are restless at night and find it difficult to sleep. Older people often need less sleep than younger people in any case. Dementia can affect peoples body clocks, so that they may get up in the night, get dressed or even go outside. This can be worrying- and exhausting. • Make sure the person has enough exercise during the day and use the toilet before bed. • Try a walk before bedtime, a warm milky rink and soothing company before sleep. • If the person wakes up, remind them it is night-time. • During the light summer months- it can feel like daytime very late at night or early in the morning, putting a clock in the bedroom to indicate AM or PM. Or consider darker curtains or blackout blinds.

Hiding or losing things People with Dementia sometimes hide things and then forget where they are- or forget that they have hidden them at all. The wish to hide things may be due to feelings of insecurity and a desire to hold on to what little the person still has • However impatient you feel, try to be reassuring • Don’t leave important documents lying around, and keys are in a safe place. • Try and find out the person’s hiding places, so that you can find ‘missing’ items. • If the person hides food, check hiding places regularly, and discreetly dispose of any perishable items.

Suspicions Some people with Dementia can become suspicious. If they have mislaid and object they may accuse someone of stealing it, or they may imagine that a friendly neighbour is plotting against them. These ideas may be due to failing memory, an inability to recognise people and the need to make sense of what is happening around them. • If this happens, state calmly what you know to be true, and reassure and try and distract. • Try to remember that although the person’s interpretation may be wrong, the way the person feels is real. • Don’t automatically dismiss the suspicions, there could be a possibility that they may be true.

‘Sundowning’ Many people with Dementia, especially in moderate stage, experience periods of increased confusion at dusk, with their disorientation continuing through the night. This is known as ‘sun downing’ and usually diminishes as Dementia progresses. Causes could be: • Mental and physical tiredness at the end of the day • Reduced lighting and an increase In shadows • Less need to sleep, common among older adults. • An upset ‘body clock’ with the body mixing up day and night.

Try to remember that the person you are caring for is not being deliberately difficult, their sense of reality may be very different to yours but very real to them. • Ask yourself- is the behaviour really a problem? Can the task wait until later? • Try to put yourself in the persons situation. Imagine how you would feel. • Offer reassurance. • Remember that ALL behaviour is a means of communication. Try to be a detective. • Distract the person with calming activities, hand massage, stroking a pet, or playing favourite music. • Ask for advice. • Try stepping away from challenging situations- it will help you understand all areas. • Medication may be required for severe cases. • RECORD- This can help detect patterns in behaviour e.g. Time of day.

Activities The homemaker: For those who’s role was to look after the house, you might offer a cloth to dust dressers or handrails, or set the table. They might enjoy folding a basket of washcloths and towels. Giving something familiar and meaningful to do. The ‘Fix it’ Individual: Was your Service User the ‘fixer’, or the handyman? Maybe he’d like to sort through and match up nuts and bolts, or tighten screws into pieces of wood. Perhaps he’d like to connect things together. There are activity boards that can be purchased.

Sunshine Care Training Sarah Yorwerth & Tara Hollinshead