Module 3 End of life care and dementia

Introduction

This module allows the learner to understand the impact of dementia on end of life care, including how dementia affects the end of life experience compared to a person without dementia. The module will begin by looking at what dementia is and the ways in which it is a life-limiting illness, before continuing to discuss the ways in which the end of life experience of someone with dementia differs from those without. Person-centred ways of caring for someone with dementia at the end of life are explored, before suggesting ways in which pain and distress can be managed when the person at the end of their life has dementia. Family members need to be supported when their loved one is at the end of their life; ways how carers can do this, are discussed at the end of this module.

Learning outcomes

When this module is completed, the learner will:

□ Know how an individual’s dementia can affect their end of life care

□ Know how to support individuals with dementia affected by pain and distress at end of life

□ Know how to support family, significant others and friends of an individual with dementia at end of life

How an individual’s dementia can affect their end of life care

How dementia can be a life-limiting illness

Different parts of our brain are responsible for different things. In a dementia such as Alzheimer’s disease, cells across the whole brain can be destroyed. This means that an individual can face a number of difficulties doing everyday things. It is known that a dementia causes memory loss but this is just one of the symptoms.

There are many different parts to the brain. However, there are three main parts to our brain which is important to know as these help us do everything we do in life as a person, some of which include:

□ Remembering

□ Reading and writing

□ Singing and talking

□ Knowing when we are hungry or thirsty

□ Falling in love

□ Thinking

□ Understanding what we are seeing

These areas of the brain are called the:

□ Frontal lobes

□ Parietal lobes

□ Temporal lobes.

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Our brain has a left side and

a right side and these areas

exist on each side of the

brain. This picture shows a

side view of the brain.

Understanding the Temporal Lobes

This part of the brain is involved in using and storing our memories, i.e. what we have just done recently - a few minutes, hours or days ago - and also what we have done a long time ago. Damage to this area of the brain can cause the individual to have difficulty with their short-term memory. This means they cannot remember things that have happened recently. Over time, as the dementia progresses, long- term memories of long ago may also fade as the damage increases further into these deeper parts of the brain.

Understanding the Frontal Lobes

The frontal lobes are found in the front part of our brains. This part of the brain helps us to do a number of things. One of the main areas it is involved in is controlling our behaviour.

The Frontal Lobes = Our Controller

As we grow, our behaviour is shaped by others. No one likes to be the odd one out, so we learn to follow certain rules, control certain emotions or wishes, and act in certain ways so that others accept us.

However, damage to the frontal lobes can lead to an individual no longer being aware of when their actions are seen by others as being inappropriate or offensive. A person might:

□ Take their clothes off in public

□ Swear at people.

□ Masturbate in public

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There is nothing wrong with these behaviours; we all do them, but not in public. The difference is, when we don’t have a dementia, we know when and where to do them and when not to.

Understanding the Parietal Lobes

If the parietal lobes are damaged by a dementia, an individual may have trouble with some or all of these areas of life:

□ Language

□ Vision

□ Knowing what things are for

Individuals with a dementia may have trouble in a number of areas to do with language. The problems the person has with language will depend on which part of the language area of the brain is damaged.

The individual may have difficulties with:

□ Reading

□ Knowing the name for certain objects

□ Coming up with the right word to name an item, i.e. they might call a knife a spoon.

An individual may also have something called:

□ Expressive aphasia Receptive aphasia.

Expressive aphasia is when a person has trouble talking, i.e. putting words together. However, they can still understand speech and what is being said by others.

As a care worker, it is important not to assume that just because an individual cannot talk, that this means that they cannot understand what is being said to them or about them.

Receptive aphasia is when a person has trouble understanding what is being said to them. The individual will be able to talk. However, the words spoken may be mixed up. Although the words spoken by a person may not seem to make sense, it is important not to ignore these words – they still have meaning.

Vision and the Brain

For many individuals with a dementia, their brain may have trouble interpreting what they see. It is not that their eyes are damaged, but the part of the brain that interprets what is being seen that is damaged.

This may cause difficulty for some people because they misinterpret what they see in their environment.

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Knowing what things are for

For many people with a dementia, this area of the brain can be damaged and so they may have what is known as:

□ Agnosia

This is when an individual no longer understands or recognises what the purpose of an object is.

The differences between the end of life experience of an individual with dementia and an individual without dementia

Cox and Cook (2002) identified several ways in which people with dementia can die:

□ Complications of end stage dementia

□ People in the early stages of dementia can die from other conditions, identification and treatment of these conditions can be complicated by dementia, for example, the person might not be able to communicate

they are in pain and cancer might go undetected

□ People can die from a range of problems, that can be complicated by dementia

All people with dementia are at the end of their life and can experience additional problems to those highlighted in someone without Dementia, as a result of the disease. Mitchell (2009) found that people with dementia can have problems eating, are more likely to contract pneumonia or have seizures. Existing medical conditions such as asthma and diabetes can become difficult to manage as dementia progresses. Dementia symptoms can cause problems that can be key to planning care at the end of life and planning for a good death, for example:

□ Diminishing mental capacity

□ Communication problems, this can mean the person is unable to communicate hunger, thirst, pain, discomfort or existence of other medical conditions

□ Uncertainty in prognosis

Due to the nature of the condition, people with dementia will become increasingly frail and vulnerable as their illness progresses, resulting in them becoming increasingly dependent on others for all of their care needs. Life can be very distressing for the person and their family.

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Ways in which person-centred care can be used to support an individual with dementia at end of life

This section demonstrates how the five key elements of person-centred care are fundamental to all of us as human beings, whether we have a dementia or not. You will look at how the ideas in a person-centred philosophy apply to yourself as a person. Everyone at different points in their life experiences well-being and ill-being – these two experiences are a key part of understanding person-centred care. This will help you to explore what well-being and ill-being are and how to recognise the signs in people with a dementia.

We used to think that a person with a dementia was unable to experience well-being,i.e. feeling good, because their brain was so damaged that they could no longer enjoy themselves. Now that we know more about dementia, we understand that this is not true. Dementia affects specific areas of the brain concerned with memory, thinking, reasoning, insight and language. Until the dementia is well advanced, other parts of the brain remain unaffected. The five senses – sight, sound, touch, taste, and smell, for example - are not affected at all. Nor are some of the emotions, which are stored deep within the brain.

There is more to being a human-being than a body and a brain. When working with anyone who has a disability, we have to learn to see beyond the disability to the person inside. This is especially true of a person with a dementia who usually cannot tell us what their reality is like.

In order to support the person, we have to be able to accept this other reality and the emotions which go with it. It helps if we know as much as possible about their life story. If we have this information and if we also observe their behaviour carefully, we can make decisions based on evidence about their well-being or ill-being.

The five key elements of person-centred care

□ Biography and Identity

□ Autonomy and Agency

□ Communication and Interaction

□ Comfort and Attachment

□ Security and Belonging.

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These five elements essentially mean that, in order to be and feel like a whole person, these needs must be addressed. A simple way of understanding these five elements is to think of them as below:

□ Needing comfort

□ Needing to feel you belong

□ Needing to hold on to your identity

□ Needing to feel included and not isolated

□ Needing to feel useful

□ Needing to feel loved and cared for. The benefits of working with an individual in a person-centred manner

These elements are needs that are part of all of us as human-beings. However, for us, it is much easier to attempt to fulfil these needs in our life. We can largely do this for ourselves, whereas individuals at the end of their life need us to create their opportunities to have these needs met.

The ideas in person-centred care apply to carers and others

Person-centred care encourages us to see people with a dementia as unique individuals. However, the same applies to you and your colleagues. You are unique and there will never be another you. The same applies to people with a dementia.

The ideas behind this approach can be applied to everyone with or without a dementia.

Independence, freedom and being in control

Everyone needs to feel that they have independence – as a teenager, it is something many struggle for. Try and consider:

□ In what ways are you in control of your life now?

□ How it feels to be in charge of your life

Feeling that you can communicate and connect with others

This involves feeling that you are able to talk, share, listen and be involved with others. Try and consider what works best for others in getting through to you.

The importance of feeling that you belong

All of us need to have a sense of belonging, not feeling alone, being responded to.

Try and consider:

□ Where/from who/what gives you comfort in your life at the moment?

□ At the moment to who or what are you attached – what or who makes you feel at ease and comfortable?

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The need to feel useful and included

Try and consider what makes you feel busy, occupied and included – what makes it meaningful. These questions about your life are important in understanding that these feelings are not only really important to you, but also to the individuals you care for and support.

Well-being is what we all need to make life worth living. A person with dementia has lost many of the mental abilities which we all use to keep ourselves happy. They are very vulnerable to a loss of well-being. They need the help of other people to maintain their well-being. However, we now understand that, with the right kind of help, it is possible for people with a dementia to have good enough well-being to feel that life is worth living even if it is not perfect. It is useful to remember that nobody lives in a state of well-being all the time anyway.

How we can assess well-being and ill-being through careful observation

Care workers make judgments about what the people in their care are thinking and feeling all the time, without being aware of it. They often base these judgments on guesses and hunches and on what they have been told about the person by someone else.

It will be better for all concerned if care workers learn to base their judgments on careful observation of the feelings and behaviour of the person.

Two heads are better than one. You are more likely to get a true picture if two or three of you put your heads together about the person. Members of staff who see the person at different times of the day, for instance, might have different opinions about them.

How to support individuals with dementia affected by pain and distress at end of life

Ways to determine whether an individual with dementia is in pain or distress

It is important to remember that dementia is just one condition and not to assume other complaints are a symptom of dementia. People at the end of their lives are likely to have other painful conditions, such as arthritis, stomach upsets, cancer, migraines, adverse effects from medications or back pain. As it is difficult for people with dementia to verbally communicate their pain, it is important that carers are aware of all the ways they can determine whether a person in their care is in pain or discomfort.

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The signs of pain

Pain and discomfort has many causes and it can manifest itself as a physical, psychological or emotional problem.

Signs and symptoms of pain and discomfort can be many and varied, including:

□ General body tension

□ Verbalising the need for analgesia (painkillers)

□ Complaining of pain

□ Restricted movement/reluctance to move

□ Pointing to/holding the affected part

□ Swelling/deformity/inflammation

□ Crying or other signs of distress

□ Non-verbal signs, e.g. facial expressions, posture, etc.

□ Agitation/confusion/irritability/fidgeting/nervous habits

□ Sleeplessness (insomnia), disturbed sleep, restlessness

□ Depression and/or anxiety

□ Changes in behaviour – withdrawal or aggression

□ Signs of fear or reluctance to seek medical advice – verbalising worries about ill-health

□ Light-headedness, fainting, nausea or vomiting.

In addition to looking for signs of pain, it is also beneficial for carers to identify signs of ill-being and well-being in persons with dementia. Doing so will enable staff to take a holistic approach to addressing pain, rather than just physical pain.

Signs of well-being

□ Can the person communicate what they want and/or need and make a choice? There are many other ways to communicate other than speech, i.e. an example would be - can they challenge someone who is trying to make them do something they don’t want to? If the person can do this, it is a sign of well-being

□ Can the person make contact with other people? – through touch, talking, making sounds, eye contact or using gestures (language is not necessary)

□ Can the person show warmth/affection or respond to warmth/affection from other people? This applies to anyone in their life

□ Does the person show pleasure/enjoyment? Examples might be enjoying a good meal, waking up happy in the morning, looking alert and happy during an activity even if they are not joining in

□ Is the person able to respond to things around them? This could be something small like a sudden noise, or watching birds through the window or TV. You will need to observe closely to see the difference between responding in this way and vacant staring which is probably a sign of ill-being

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□ Does the person use their remaining abilities? If they can speak, do they? If they can dress themselves, do they try to? If they can walk, are they still prepared to? You will need to take into account whether the person is choosing not to use their abilities or it may just be that staff never gives them the opportunity to do so and take over too much

□ Is the person co-operative and helpful? They might volunteer to help or agree to help if asked. It doesn’t matter what the result is. What matters is the willingness to ‘have a go’

□ Is the person responding appropriately to people/situations? Are they aware of other people’s needs/feelings – moving out of the way to let someone pass, giving another person a comforting pat or showing concern for someone who is distressed?

□ Does the person express appropriate emotions? This is one of the harder ones to assess as it depends on who decides whether an emotion is appropriate or not. They may be sad when a visitor leaves – or cry when they remember their dead husband – or they may get a buzz out of having an argument or angry if they have been insulted. This shows that the persons’ own personal responses are still relatively intact

□ Does the person show a sense of humour? Jokes, dry comments or actions intended to make others laugh, which are created by people with a dementia are signs of well-being. Another person, whether they have a dementia or not, does not have to be able to understand the joke – just share the laughter

□ Does the person show that they have a sense of purpose? Does the person seem as if they feel they can make things happen? Real or pretend work (related to their past job) would be an activity of this kind – clearing cups, folding napkins, offering to wash up, etc.

□ Does the person show a sense of self-respect? This is another of those indicators which can be confusing. If an individual is trying to preserve their modesty, dignity or self-respect through refusing to join in an activity they see as childish, or not wanting help with intimate personal care, or refusing to co- operate if they are treated like a child – these are all signs of well-being, i.e. they still feel in charge.

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Signs of ill-being

Similarly, ways of observing ill-being can be used by noting whether individuals are:

Depressed or despairing

The person is frequently in a state of misery, grief or upset. They have a downcast expression, a flat tone of voice and make little eye contact. They say things that indicate feelings of hopelessness and helplessness and quickly return to this state after happier interludes. They cry a lot.

Intensely angry or aggressive

The person has outbursts of rage that go beyond expressing appropriate feelings. Examples include unprovoked attacks on other people, or howls of rage when things go wrong. Most ‘aggression’ towards staff can be seen as signs of well-being, e.g. the person is attempting to communicate or is expressing appropriate feelings in response to being treated in a particular way. Unpleasant though it is for staff, it need not be a sign of ill-being in a people with a dementia.

Shows anxiety or fear

The person appears worried, anxious, apprehensive, etc. Examples include continual nervous movements, stuttering speech, trembling, and repetitive actions. The person may say things which indicate anxiety, either directly or using metaphors, e.g. ‘When is the bus coming for us?’ The statement is not meant to be taken literally but is an expression of the way the person is feeling. They may show signs of panic, nervous trembling, rapid stuttering, crouching in a foetal body position – curled up and with the face covered.

Agitated or restless

The person shows signs of agitation such as more movement than usual and/or faster movement than usual. This also applies to speech, which is faster and more frequent than usual. Also, look out for worried frowns. Listen to what the person is actually saying. If a person is agitated, repetitive movements become faster, speech becomes more indistinct and the person is restless. It is not always possible to tell exactly what they are experiencing, except that it is not good. A person with a dementia who does a lot of walking or talking is not necessarily agitated. In their own mind, they may be busily engaged in everyday activity or imitating what members of staff are doing – even if the imitation is inaccurate. Walking is not necessarily a sign of agitation.

Withdrawn or listless

The individual does very little and is reluctant to join in when activities are provided. They do not seem alert, drift in and out of sleep and do not respond to stimulation. They are not active.

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Has physical discomfort/pain

The person shows signs of pain or discomfort, e.g. wincing, rubbing or holding the sore place. They may say that some part of their body hurts. But they may not say anything and you need to watch out for signs that the person is in pain. Walking or moving about restlessly, shifting their position in a chair or bed may be evidence of pain. We know there is a lot of undiagnosed pain in people with a dementia.

Unresolved grieving over losses

Grief over all the things that the person has lost is appropriate for someone moving into long-term care from their own home. They have lost many things – e.g. their independence, status, being with loved ones, abilities, maybe they have lost a partner through death. The things people say may give you clues. ‘Fancy a big chap like me needing help’ – ‘We’re all out to grass here’. This is not a sign of ill-being unless it is very intense and lasts for a very long time. Frequent references to losses such as the death of a baby many years before or a traumatic experience in the past, like being taken prisoner in the Second World War, are signs of unresolved grieving.

Bodily tension

The person shows a lot of bodily tension or adopts rigid positions. They are rarely relaxed.

Easily ‘walked over’ by other people

The person is put off or crushed by other people’s remarks or action. Signs of this may be that the person:

□ Creeps away if someone makes a critical remark

□ Stops doing an activity if someone else is watching

□ Does not defend themselves if someone takes something that belongs to them, tells them to move out of a chair or get out of their room

□ Does not seem to make good use of the abilities they still have

□ Lacks the resources to deal with the rough and tumble of living as part of a group.

Feels like an outsider

The person is living in a place where they are at risk of feeling like an outsider. Examples of this would be:

□ A person whose first language is not English living in a place where everyone else is an English speaker

□ The only man in a place where all the other people – residents and staff - are women

□ The only member of the group who follows a strict religious code

□ A professor in a place where there are no books

□ Someone who is seen as more ‘posh’ than everyone else.

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Ways to support an individual with dementia to manage their pain and distress at end of life

There are a number of reasons why individuals with dementia typically receive poor pain relief. The most obvious is that the individual with dementia may lose the ability to tell us they are in pain. Also, carers and care staff often do not recognise when an individual is in pain or do not know how to help. People may think that some behaviour – for example, calling out for help repeatedly – are due to 'the dementia' rather than to pain. Some believe that individuals with dementia do not experience pain or that, because their memory is so poor, they forget the experience.

One of the most common and effective medicines to relieve pain in dementia is paracetamol. Ensure medication (for example, paracetamol) is given as prescribed. This can be when it is needed – if pain is constant, give it regularly. Paracetamol can be given one hour before someone is helped to move or before dressings need to be changed. Other medications to relieve pain include antibiotics to treat infection, laxatives to relieve constipation, antacids (such as Gaviscon) to help indigestion, and peppermint water to relieve wind-type pain.

Supporting an individual to take medicine

Issues to consider:

□ What medication does the individual take (how much, when and what is it for?)

□ Does the individual suffer any side effects from the medication?

□ When was the last time their medication was checked, by whom and how frequently?

□ What support (if any) does the individual need to take their medication?

□ From the individual’s perspective, what works to maintain a good medication regime?

□ From the individual’s perspective, what does a bad medication regime look like?

□ Therefore, what support does this individual need to have the right medication prescribed and monitored?

Administering could involve fitting in with the routines of the individual or meeting the preferences of the individual – for example, do they prefer tablets or solutions; do they prefer a certain type of drink; one tablet at once or any specific ritual or sequence? Enabling techniques should be noted and adhered to; perhaps the individual prefers to be given their medicine in a certain way, time or by a specific person. The individual care plan should be referred to for individualised preferences and how much support the individual requires. Self-administration should be encouraged if viable.

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How to support family, significant others and friends of an individual with dementia at end of life

Ways to support others to understand how the end of life experience may differ for an individual with dementia

For many families who have been caring for the person with a dementia for many years, when the person moves into a care home, they may be left with a massive gap in their lives. Some families may still wish to be involved in the support of the person with a dementia and need to feel you are sharing the care with them, so they feel actively involved.

Helping families still see the person

Some families have described the experience of caring for someone with a dementia as a ‘living bereavement’. What they mean by this is that the person they once knew is no longer there – the person who they were has died, even though their body is still alive. This is not true. The person with a dementia is still a whole person with the range of feelings we all have. They may, however, seem a different person, and this is what makes it difficult to accept in someone you have loved for many years of your life.

For many families, all they want is the person with a dementia to return to the person they once knew - their husband, wife, mother, father, son or daughter.

The difficulty in working with families is helping them to see that, despite all the changes the person with a dementia has gone through, they are still there. The person has not died. We cannot change people with a dementia – you can’t ‘fix’ dementia, but you can support and help families to try to change themselves, and accept and love the person with a dementia as they are now.

Helping families learn about person-centred care

You and your colleagues need to consider how to support families and help them learn what person-centred care is. For many families, this will be too painful, because it will mean letting go of the hope that the person with a dementia will return to how they used to be. For other families, they will need you and your colleagues’ support to help them to re-learn to love the person with a dementia as they are now, rather than trying to change the person back to the way they used to be.

Identify sources of information and support for family, significant others and friends of an individual with dementia at end of life

Families may look to care workers to help them understand a dementia. Some families may already have a good understanding about what dementia is – others will need more support and information. You might be able to select some reading information that might be helpful for families, or you may think that they will benefit from additional support from other organisations. As a care worker, it is advantageous to find out what types of support are available in the area you are working in.

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Carers can find out about dementia support services in the following ways:

□ Ask the person’s GP - the GP will be able to advise about services that are available in the local area, and they will be kept informed about services and support their patients family might need

□ Ring local social services - your local social services will be able to tell you about services as well as refer families to them. Some people will already have a social services referral; in these cases, the social worker can advise on local groups that might be beneficial to the person and their family. If a social services referral is not in place, then the GP can put a referral in and advise on support services

□ Internet- You can also contact several national charities or organisations, many of these have support groups across the country and there is likely to be one near you. These organisations and their contact details can be found on the internet; some are listed below.

Alzheimer’s Society http://www.alzheimers.org.uk/site/index.php

- The leading charity and provider of support for people with dementia and their families.

Age UK http://www.ageuk.org.uk/

- Has information regarding a host of conditions, including dementia and can be contacted for advice or further information relating to dementia.

Daily Strength http://www.dailystrength.org/c/Dementia/support-group

- Provides online dementia support.

Google www.google.com

- A simple google search of ‘dementia support’ plus the name of your town, is likely to bring up some good results.

Your local council website

- Find this and then put ‘dementia support’ in the search tool - a list of your local support groups should appear in the search results.

Conclusion

This module has looked at the end of life experience when the person has dementia. The learner can now understand the ways in which dementia limits life, how the end of life experience differs when the person has dementia and the learner can identify and suggest ways to manage pain and distress. Families need to be supported, often needing help to see how dementia differs the end of life experience; the learner can now signpost family and other caregivers to appropriate sources of support.