F/616/4006

End of Life and Dementia Care

Unit Ref: F/616/4006

Introduction

This workbook is designed to cover the knowledge that you will need to complete in the
relevant optional units for the Health and Social Care.

Once you have completed this work book, your skills and knowledge will be assessed in
the workplace.

I hope this workbook will help you to achieve the knowledge required and wish you every
success
F/616/4006

Understand considerations for individuals with dementia at end of life

1.1 Outline the reasons why dementia can be regarded as a terminal illness
Dementia is not always recognised as a terminal illness as often there are other health problems
such as cancer or heart disease which may be the main health concern. Dementia is however a
terminal illness. Susan L Mitchell a senior scientist at the institute for Aging Research explains it
like this “As the end-of-life approaches, the pattern in which patients with advanced dementia
experience distressing symptoms is similar to patients dying of more commonly recognized
terminal conditions, such as cancer.”
As dementia progresses it causes the brain to start forgetting things which effect the everyday
functioning and thus people become dependent on others for care. Ways in which dementia can
be terminal include – Memory Loss, which is usually an early symptom can become very severe
in the later stages, with individuals forgetting their whereabouts, everyday objects and loved ones
this can result in anxiety and depression; Communication, dementia can cause difficulty in
speaking or complete loss of speech; mobility, dementia can cause shuffling or unsteadiness
which can result in falling and bumping into things; Nutrition, Dementia can cause people to lose
weight which can effect mobility, skin integrity and affect the bodies immune system making it
harder to fight infection. It can also affect the individual’s ability to swallow.

1.2 Identify the indicators that an individual with dementia is approaching the terminal phase of their
illness.
Dementia is often a slow and unpredictable progresses, experts suggest that in the final stages of
dementia individuals may be unable to move on one’s own, unable to speak or make themselves
understood, may need help with most daily activities such as eating and self-care and eating
problems such as difficulty swallowing.

1.3 Compare the differences in the end-of-life experience of an individual with dementia to that of an
individual without dementia.
People who suffer with dementia will most likely suffer from an array of symptoms, this impacts
their communication and understanding which makes it difficult for that individual to express
their wishes or needs. People who do not suffer with dementia will usually be able to make their
wishes and preferences known unless they suffer from another illness which inhibits their ability
to communicate these. Confusion about what is happening can be distressing for a dementia
sufferer as they may not understand their needs, i.e., why they are in pain, when they need the
toilet etc. a non-dementia sufferer will be able to listen and retain information and gain some
understanding to what is happening. If a person with dementia is found to lack capacity, decisions
will be made for them in their best interest a person without dementia or who has capacity can
make these decisions for themselves, these decisions can involve finances, healthcare and can be
important life decision. Overall, the experience for a dementia sufferer can be much more
limiting, distressing, and undignified, creating an end-of-life care plan as early as possible can be
a great way to ensure that the individual with dementia get the care they want.

1.4 Explain why it is important that end of life care for an individual with dementia must be person-
centred.
Person centred care is one of the most important parts of all care, it is important for promoting a
healthy well-being and providing dignified care. A person suffering with dementia at the end of
their life needs extra support to ensure an individual needs, wishes and preferences are respected
and followed. They may need extra physical support – in managing pain, controlling symptoms
F/616/4006

and making them feel comfortable; psychological support – providing emotional support and time
to listen and be sensitive to their concerns; social support – providing the individual and their
families with support about areas such as finances and legal support; spiritual support – helping
them understand and make sense of what is happening to them and identifying sources and
spiritual leaders who can provide support; food and drink planning – nutrition and hydration must
be provided to meet the needs of the individual, offering food and drink by mouth as a basic care
need but individuals who have difficulty swallowing or at risk of choking may require extra
support in this area; palliative care – individuals needs may require specialist care or advice from
a palliative care team, a prompt referral is essential when this situation arises.

It is so important to be person-centred when providing care to ensure that the individuals dignity
and respect are maintained and that they receive the same opportunities available to them as
someone who is not suffering from dementia. Promoting their well-being and providing a holistic
approach to end-of-life care will help them to be as comfortable as possible. It is important to
focus on the quality of the individual’s life and death rather than the length of life, making
everyday as enjoyable and meaningful as possible.

1.5 Explain why individuals with dementia need to be supported to make advance care plans as early
as possible
Although a decision will always be made in someone’s best interest, next of kin may not always
know what the individual really wanted from their care. Decisions about ongoing medical
procedures, wishes to have religious practices or having a DNAR in place are all difficult
decisions for anyone to make, let alone someone suffering with dementia. An individual should
be supported to make an advance care plan as early as possible as dementia is a progressive illness
the gets worse over time and can progress rapidly. By creating an advance care plan in the early
stages of dementia, you can ensure that the individuals wishes, needs and preferences are
documented before the illness takes away too much of their communication and cognitive ability.
End of life planning should be approached with care and sensitivity, due to the nature of the task,
although someone may not be able to make all decision it does not mean they cannot make some.
It is important to remember that even making choices over meals can help a dementia sufferer to
feel more in control and comfortable and these smaller decisions can have a big impact on an
individual’s well-being.

Understand how to support individuals with dementia affected by symptoms at end

of life.

2.1 Explain the symptoms which may be experienced by individuals with dementia at the end of life
Common symptoms that people suffering from dementia may experience at the end of life are
pain and difficulties in swallowing. The symptoms experienced are like those of cancer sufferers such as
pain, pressure sores, agitation, loss of appetite, low mood, difficulties in breathing and constipations. If a
person has started having more illnesses such as UTI’s or chest infections this is often a sign that a person
is nearing the end of their life.

2.2 Explain why symptoms in individuals with dementia are often poorly recognised and undertreated.
People with dementia my show symptoms in a variety of ways but due to the nature of dementia as
it progresses a person is less able to express their symptoms. They may present with challenging
behaviour, shouting or agitation which can be mistaken as symptoms of dementia and not of
anything else. Whereas these could be a sign of pain and should be investigated further.

2.3 Describe ways to assess whether an individual with dementia is in pain or distress.
F/616/4006

Individuals with dementia should be observed closely and still be asked whether they are in any
pain, observation can really help to reveal whether someone is in pain. Signs we can look for are
Facial expressions such as frowning, looking scared, excessive blinking, and showing any
distorted facial expressions; verbalisations such as moaning or groaning calling out, asking for
help or being overly aggressive can all be indicators of pain. An individual’s body language and
emotional language can be a key indicator of pain, being rigid in posture, fidgeting, pacing, or
rocking, crying, showing distress, or becoming irritable can also indicate pain.
Understanding an individual is so important as you need to be able to recognise what is someone’s
‘normal’ behaviour and what is a concern, including family and friends can help as they can also
identify signs of pain. Sometimes all that is needed is a little one to one time to listen, engage and
observe in order to determine if the individual is in pain.

2.4 Describe ways to support individuals with dementia to manage their pain and distress
at end of life using: a) Medication and b) Non medication techniques
If a person with dementia had been assessed and identified that they are in pain, then they should
see a doctor who can determine what the next steps are. For a minor pain such as headaches it is
likely that paracetamol will be prescribed, for more persistent pains then a stronger medication
may be needed, which can give constant pain relief slowly over a period of time. At the end-of-
life morphine is used and can be administered through a syringe driver to deliver constant pain
relief.
Non-medicated approaches to alleviate pain can include physiotherapy, acupuncture, massage, or
relaxation techniques. These approaches can be difficult to deliver at the end of life as the
individual is likely to weak or reluctant to received therapies or medication. It is therefore
imperative that you explain these interventions with the individuals to make them feel more at
ease. Palliative care can ensure that effective pain strategies are in place when needed and can be
used at any stage of the illness.

Understand how to support carers of individuals with dementia at end of life

3.1 Explain why carers may experience guilt and stress at the end of life of an individual
with dementia.
End of life is never an easy situation, as a care you build up a relationship with the individuals in
your care and with their friends and family. They may have been in your care for a long time, and
you may remember them before the dementia progressed, which can cause a deep sense of grief.
Carers may feel guilt over the fact that communication is more difficult, and they may feel unable
to help them as well as they feel they should. Every task may be more difficult and more
distressing and so carers can feel stressed and guilty over feeling frustrated with the individual.

3.2 Describe ways of supporting carers to understand how the end of life process may differ for
individuals with dementia.
Through training and supervisions, we can help carers to understand end of life and pain
indicators in people suffering with dementia. It is important to remember that someone with
dementia can not express themselves in the same way as someone without and so it is important to
educate staff in this also.

3.3 Describe how others caring for individuals with dementia may experience loss and grief.
Greif is a difficult and individual process for everyone, there are many factors which can
contribute to this whether that is cultural influences, faith and spirituality, experiences of loss as
well as the relationship with the individual who has passed away. The way someone experiences
loss for someone with dementia can be very different to that of an individual without dementia.
This is because of the complexities of dementia and length of the illness. Due to the progression
F/616/4006

of dementia, some people can feel that the person they knew had passed before they physically
passed and so may have already dealt with the grief, while others choose not to see it that way.

3.4 Describe ways of supporting carers when difficult decisions need to be made for individuals with
dementia at end of life.
It is so important that any decision a carer needs to make for an individual is done in their best
interests, and so it is necessary to support carers to understand that there will be difficult decisions
in end-of-life care. They can be crossed with decisions such as adaptations to food when the
individual find it difficult or is unable to swallow, they may have to decide nil by mouth is in their
best interest to prevent the risk od aspiration. The individual may be unable to express pain and
so a care would have to observe and decide when it is suitable to administer medication if needed,
this can be especially difficult if there are also family members wanting to get involved in this
aspect as they may not notice the signs of pain, and this can cause issues. At the end of the day,
carers have a duty of care to ensure that the individual is treated with dignity and respect until the
end of their life.

3.5 Give examples of how to support carers and others to support an individual with dementia in the
final stages of their life.
The support you give during end-of-life care is very important. You must consider the support
you give to the family as well as the individual both before and after the death of the individual.
You must keep everyone informed of what is happening, especially when there is a change in the
individuals’ conditions, you must be available to answer questions about their care and condition
and you must ensure that any last wishes are respected. Be aware of any spiritual or cultural
issues that need to be observed and it is important to remember that how people die lives on in the
memory of those close to them. Carer should look at what you can do after the death has
occurred, the family will probably have questions about what happens next, ensure that they are
informed and that they have privacy for family to stay with the individual if they wish.