Dementia Workbooks

These workbooks have been mapped against the Dementia Framework Strategy (DOH,
2015) and the ‘Dementia Core Skills Education and Training Framework’ located on the
Blackboard supporting files section. Once completed you will need to present this
workbook to your home group tutor who will review the learning summaries from each
workbook.
The following topic areas will be covered across the three workbooks, some as distinct
topics; others are covered throughout the workbooks:
• Dementia awareness
• Dementia identification, assessment and diagnosis
• Dementia risk reduction and prevention
• Person-centred dementia care
• Communication, interaction and behaviour in dementia care
• Health and well-being in dementia care
• Pharmacological interventions in dementia care
• Living well with dementia and promoting independence
• Families and carers as partners in dementia care
• Equality diversity and inclusion in dementia care
• Law, ethics and safeguarding in dementia care
• End of life dementia care
• Research and evidence-based practice in dementia care
You will find embedded within your workbooks a range of activities and videos to aid your
learning, you are expected to do some independent research although some guidance will
be given to appropriate resources.

How to guide
Opening links
Some of the links require you to right click on them and select ‘open hyperlink’, alternatively
you can hold ‘Control’ and click the link to open it.
You can also copy and paste the link into a new address bar in your internet browser.
Some information is available in the ‘Supporting information’ folder on Blackboard. These
files are highlighted in bold text.

How to progress
Start by reading the text provided.
The links are not exhaustive and you may find you have read other information, which is
relevant.
Use the workbook to guide your learning about dementia, each workbook has a learning
summary at the end. Use your notes from earlier in the workbook to help you answer these,
the text boxes will expand as you type or can be made bigger if you wish to hand write your
answers. Your home group tutor will check these learning summaries have been completed.
You need to have completed all three in order to pass the course.
Be organised
This is the key to progressing through this work.
It is up to you to decide how to manage your time to complete the workbook. We advise
that you do not wait until the last minute to finish it.

1
Use reflection appropriately
Some of the activities ask you to ‘reflect’ this means we want you to think about what you
have seen or read and how this links into practice. For some of you it may be that you can
write from years of experience, others maybe not. Always remember confidentiality.
Example of a reflective piece
‘I worked with Mrs. Steele on ward 10. She was confused and wandering around the ward.
When she came to hospital, her family told us she had lost a lot of weight and had not been
looking after herself properly.
Having read that people may struggle to communicate their needs very well, I took a lot of
time to offer Mrs. Steele something to eat which she was able to manage independently.’
(Student nurse Joe Perry)

Dementia Awareness
What is meant by the term dementia?

“Dementia is not a disease in itself. Dementia is a word to describe a group of symptoms

that occur when brain cells stop working properly”.
Can you list some symptoms you may see when nursing a patient who has dementia?
(Some useful websites are: www.nhs.uk, www.alzheimers.org and www.alz.org)
Memory loss
Changes in behaviour
Thinking speed
Difficulty in communication and language
Aggression
Mental sharpness and quickness
Sight and hearing loss
Perception and hallucinations
Sleep disturbance and waking up at night
Apathy, depression and anxiety
Walking for long periods
Difficulty understanding and making judgements

Prevalence of dementia

2
Approximately how many people are living with dementia in the United Kingdom? (Useful
Resources – World Health Organisation (WHO) & Alzheimer’s Society)
The prevalence of dementia in UK is around 850,000

What does this graph below tell you?

The graph below shows that the prevalence of dementia increases with the increase in age
and Women are more at risk of dementia than men are.

What are the reasons for the growth in prevalence?

The human life span is increasing because of improved life standard over the past century.
With increased incidence of people living longer than before, there is an increased in
prevalence of dementia.

Reducing the risk

It is likely that a mixture of our age, genes and lifestyle could contribute to whether we
develop dementia. The risk of developing most dementias increase with age. That means
as we get older, we are more likely to develop the condition. Dementia is not a normal part
of getting older or an acceleration of ageing, it is caused by different diseases, most
commonly Alzheimer’s. We cannot change our age and there is currently no way we can
completely prevent dementia but there may be some simple things we can do that might
help to lower our risk.
From some of the sources you have read, can you list some preventative measures?
Dementia can be prevented by maintaining healthy life style which can be done by:
 eating a healthy, balanced diet
 maintaining a healthy weight
 exercising regularly
 keeping alcohol to a minimum
 stopping smoking
 keeping blood pressure at a healthy level

The importance of early recognition & early diagnosis

Diagnosis is a crucial step for most people with dementia and their families and is often not
a single event but a process over time. For some people the process can take years, due to

3
diagnostic uncertainty, or service limitations. Some people experience the assessment and
diagnostic process as upsetting and distressing. In some cases, the diagnosis process is not
initiated until dementia has advanced beyond the early stages.
Less than half of people living with dementia in the UK have a diagnosis. There are also
huge disparities in diagnosis rates across the country, ranging from 32% Herefordshire to
75% in Corby. There are currently 416,000 people in England who are living with Dementia
but who are not diagnosed (Alzheimer’s Society, 2014)

It is essential a timely assessment is carried out to:

Rule out other conditions that have similar symptoms and may be treatable, including
depression, chest and urinary tract infections, severe constipation and vitamin and thyroid
deficiencies.
Rule out other possible causes of confusion (e.g. poor sight or hearing), emotional changes
and upsets (e.g. moving house or bereavement) or the side effects certain drugs or
combinations of drugs.
Provide a person with dementia with an explanation for their symptoms, removing
uncertainty and allowing them to begin to adjust.
Allow a person with dementia to access treatment as well as information, advice and
support (emotional practical, legal and financial)
Allow a person with dementia to plan and make arrangements for the future.

You cannot presume a patient who is confused has dementia!

Health professionals will take a look at the individual history such as:-
Loss or lapses of recent memory
Mood changes or uncharacteristic behaviour (in later stages this become more pronounced)
Poor Concentration
Getting lost in familiar places
Making mistakes in a previously learned skill (eg. Cookery)
Problems telling the time or using money
Changes in sleep patterns and appetite
Personality changes
Visuospatial perception issues (ie, the brain not processing images as normal)

The value of early intervention is that it provides support at home and decreases the
institutionalisation (the need to go into a care home) by 22%. Case management can reduce
admission to care homes by 6%. Older peoples mental health services can help with
behavioural disturbance hallucinations and depression associated with dementia, thus
reducing the need for institutionalised care. Care support and counselling at diagnostic
stage can reduce care home placements by 28%. Early diagnosis and intervention have
positive effects on the quality of life of people living with Dementia and the life of family
and carers.
The impact on individuals, family & society

4
Dementia UK was honoured that Tommy Whitelaw joined us at our Admiral Nursing Forum
to talk about his experience of dementia and his campaigning. This is Tommy’s story…
Tommy returned to his family home in Glasgow, in 2007, at a cross-road in his life. Having
spent 20 years in the music industry travelling the world, Tommy was in need of a break for
a few months and like many children of any age, he knew he would find comfort and solace
with his Mum, Joan, and over her hearty pots of soup that she would cook. But when
Tommy returned he realised that life had changed for Joan.
It was the small changes in Joan that Tommy first noticed, but as the months passed it
became more apparent – Tommy was caring for and supporting his mother. Joan expressed
her fears to Tommy and asked him not to leave her; and he kept his word. A year after
Tommy returned home Joan was diagnosed with vascular dementia.
Joan and Tommy struggled together – with understanding the dementia, the caring, and the
isolation and loneliness as their world became smaller. In desperation and in crisis, Tommy
reached out to get more care but was told to go to the ‘back of the queue’. However, he
was grateful to one District Nurse who visited at 10am every Friday, and gave him and Joan
advice and support (especially with personal care), and this changed their world.
Tommy believes that it only takes one great nurse, care assistant or neighbour to make a
difference. In addition, no matter what their role and potential is their ability to reach out,
be respectful and show kindness has an enormous and positive impact. Touchingly, it was
Joan who taught Tommy that people are kind and amazing and to never stop seeing it…
For Tommy, to combat his loneliness, he started a blog to talk about his experiences and
speak to others who were also living with dementia to see if their struggles were the same
as his. This was the start of him raising awareness of dementia through campaigning…
Tommy started asking for and collecting life story letters from people across Scotland who
was caring for a loved one with dementia. He also organised respite care for Joan while he
walked around Scotland for one week collecting hundreds more of these letters – all citing
similar experiences to his of stress, isolation and sadness over the lack of support and
information available about dementia. However, all the letters talked about love; the love
the carer had for the person they helped.
Tommy presented these letters to then Health Secretary for Scotland, Nicola Sturgeon, who
was incredibly supportive and encouraged Tommy to collect more letters and keep
campaigning to push the Scottish Parliament, to take action.

5
Sadly, Joan passed away in September 2012. Since then Tommy has been devoted to his
Tommy on Tour campaign, which has seen him set up over 570 talks with carers and
healthcare professionals – his presentation to Dementia UK was his 497th! He is also the
Project Engagement lead of the Health and Social Care ALLIANCE’s Dementia Carer Voices
Project.
The project provides a platform upon which carers can express their views and experiences
of caring for a loved one living with dementia, with a view to raising awareness among
health and social care professionals, and wider society of its impact on families and the
importance of empowering carers in carrying out this difficult but vital role.
Dementia Carer Voices is also working on a ‘You Can Make a Difference’ campaign, where it
is asking people working in health and social care services to making a pledge by asking –
what one thing will you do to make a difference to the lives of people with dementia and
their carers? To date over 10,000 pledges have been made. Tommy’s work is making a huge
difference and he has also just started working with the Chief Nursing Office in Scotland to
amplify the needs of people living with dementia.
For Tommy, the person with dementia and their carer has the right to be asked: What
matters to you? Who matters to you? How do you want your day to look? What information
and help do you need to make this happen?
Please watch and listen to Tommy’s story
https://www.youtube.com/watch?v=36_Y_3y0yXM

Please read the ‘Dementia in the family’ document located in the supporting information
section of blackboard.
Write down what you have learned from watching Tommy’s video and the real life case
studies from the ‘Dementia in the family’ document.
The role of healthcare providers is very important when dealing with the people with
dementia and their carer. It is very difficult for the carer to see their loved one in a constant
state of deterioration starting from forgetting things to ending in being incontinent, unable
to comprehend, speak and eat food. These are the times when they need someone to pat
on their shoulder and appreciate and tell them that they are doing well. The carer need
someone to tell them that how can they do better. They need someone to provide them
with the information.

Identification, assessment and diagnosis

What are common symptoms?
Dementia is not one single condition; dementia is a collection of symptoms. Including
memory loss, behavioural changes, difficulty in performing tasks they previously could do,
mood changes, and communication problems.
In the boxes below, for each of the common symptoms of dementia state two examples of
how these could be observed by yourself / reported by others. As an example, the first one
has been done for you.
Short term Frequently misplacing items i.e. keys.
memory loss Memory lapses i.e. Forget recent events

Behavioural Sleeping disturbance and waking up at night.

changes Hiding, hoarding and losing things

6
 Mood Verbal aggression i.e. swearing, shouting, making threats
changes Physical aggression i.e. hair-pulling, biting, scratching, hitting,
pinching
Communication Forgetting the right words while communicating.
problems They may repeat words and phrases
Problems with Sight and hearing loss
functioning Perception and hallucination

Age and memory loss

Memory problems are a common (but not inevitable) part of ageing, however, this is not the
same as dementia. In the table below list some comparable examples of signs of normal
memory loss and signs of dementia. As an example one has been done for you. You may
find useful information on the Alzheimer’s association website (www.alz.org) but feel free
to use any other resources.
Normal Ageing Dementia
Forgetting the names of acquaintances Forgetting names of family and friends
Forget the days of week or why you Get lost on your own street or forget where
entered a room you are
Fatigued by obligations or irritable when a Increased suspicion, withdrawal or
routine is disrupted disinterest
Occasionally struggle to find the right word Difficulty completing sentences and
following directions
Make a questionable or debatable Unsure how to dress or giving money to
decisions at times solicitors excessively
Types of dementia
As we know dementia is not one condition, it is an umbrella term for a collection of
symptoms which include memory loss, problems with reasoning, language, emotional
control and behaviour.
In the below chart, list 6 forms of dementia. You will find some in this guide but you will also
have to do some independent research.

DEMENTIA
Alzheimer’s disease Vascular dementia Mixed dementia

DE
Lewy body dementia Frontotemporal Young-onset dementia
dementia

DEM
Common types of dementia
Alzheimer’s disease is the most common form of dementia with around 2/3 of people with
dementia having this type (Alzheimer’s Research UK, 2016). Due to its prevalence,
7

ME
ENTI
Alzheimer’s disease is often referred to synonymously with dementia by the general public
and sometimes the media however there are many other forms. Alzheimer’s disease is still
not very well understood on how it develops and why some people get this and others do
not. There are changes in the brain, which interrupt the brain’s normal communication and
cause the brain to shrink.
A useful video to understand this process is:
https://www.youtube.com/watch?v=NjgBnx1jVIU

In this picture, we see

the formation of the
plaques which are
made up of amyloid
protein. In a healthy
brain, these protein
fragments are broken
down and eliminated. In
Alzheimer's disease, the
fragments accumulate
to form hard, insoluble
plaques. The neurofibrillary tangles shown inside the nerve cells are formed from twisted
fibres, which consist of tau protein. Both of these problems interrupt the normal
communication of the brain and contribute to cells dying. In the below diagram we can see
that this abnormal rate of cells dying results in the brain shrinking. Whilst the brain does
shrink, as we get older, the rate of this shrinkage in Alzheimer’s is notably faster than would
have occurred normally.

Vascular Dementia is the second most common form of dementia. This occurs due to the
blood supply to parts of the brain being cut off or interrupted and thus causing damage. This
occurs in much the same way as a heart attack might for the heart and so the same healthy
living advice is suggested e.g. exercise healthy diet, stop smoking etc.
A helpful video to understand this is:
https://www.youtube.com/watch?v=GdkU5vCIpaU&t=8s

8
Lewy Body Dementia is less common and is named after the small deposits of protein that
form within the cell body of the neurons (Lewy Bodies), this causes the cells to work less
effectively and eventually die. Lewy Bodies is closely linked to Parkinson’s disease. This form
of dementia whilst it progresses over time as with other dementias there is known to be
fluctuations in people’s cognition (Mike, 2018) and people often experience hallucinations
which do not respond to treatment.
https://www.youtube.com/watch?v=hhE2dyeHP54&t=68s

Mixed dementia is a term used when there is more than one dementia process affecting the
person. This is most commonly Alzheimer’s disease with Vascular dementia as they are the
most common forms of dementia however it can be a combination of any number or type of
dementia.
Mild Cognitive Impairment (MCI)
MCI is not a form of dementia, whilst some people do go on to develop dementia following
being diagnosed with MCI others do not. MCI is a milder form of cognitive impairment,
which does not significantly affect people’s ability to function in daily life.
Rate of decline
Whilst the rate of decline is unique to the individual, with some people declining faster than
others, there are differences in how different dementias progress. With the information
given above and in the videos please label the below charts as either: Alzheimer’s disease,
Vascular dementia or Lewy bodies.
Cognition

Cognition

Cognition

Time Time Time

Alzheimer’s disease Vascular dementia Lewy bodies

9
Communicating with patients
Imagine you have to describe these conditions to a service user / patient. Write down below
how you would do this. Consider the language you would use and your approach.
Alzheimer’s Disease
Alzheimer’s disease is type of dementia in which some proteins in the brain get aggregated.
These aggregated proteins in normal brain are removed but in case of Alzheimer’s disease,
they cannot be removed from the environment and therefore, they lead to brain cell death

Vascular Dementia
Vascular dementia is a type of dementia which is either caused by strokes or small vascular
disease. Both of them result in reduces oxygen supply to brain cells and therefore result in
progressive brain cell death
Lewy Bodies
Lewy bodies is a type of dementia in which proteins called Lewy bodies aggregate in the
neuron cell body and compromise its function and result in dying of cell
One other type of dementia (please specify which you are describing)
Mixed dementia
In mixed dementia more than two types of dementia are present in the patient and result in
brain cell death. The most common combination is vascular dementia and Alzheimer’s
disease among others.
Depression, delirium and dementia
There are many different reasons why people can develop confusion or problems with their
memory, the most common reasons are dementia, depression and delirium. Delirium is
frequently caused by infections such as urinary tract infections (UTI) or chest infections but
can also be caused by constipation, medication to name a few. Read the article
‘Differentiating among Depression, Delirium, and Dementia in Elderly Patients’ on the
blackboard space, then fill in the below table.
Depression Delirium Dementia
Will memory Yes, by the patient Yes, Yes, by the carer
problems be
reported? By
whom?
Will mood Yes yes yes
problems be
reported?
Can this be No Yes No
cured?

Why is assessment needed?

As has been stated earlier in the workbook, a thorough and timely assessment for possible
dementia is essential, in order to:
Rule out other conditions that may have similar symptoms and may be treatable, including
depression, chest and urinary tract infections, severe constipation, and vitamin and thyroid
deficiencies.

10
Rule out other possible causes of confusion (e.g. poor sight or hearing), emotional changes
and upsets (e.g. moving house or bereavement), or the side effects of certain drugs or
combinations of drugs.
Provide a person with dementia with an explanation for their symptoms, removing
uncertainty and allowing them to begin to adjust.
Allow a person with dementia to access treatment as well as information, advice and
support (emotional, practical, legal and financial).
Allow a person with dementia to plan and make arrangements for the future.
In the past people were often formally diagnosed in the later stages if at all, some of this
was reluctance for people to get a diagnosis as we have just mentioned. However, there
was, and to a much lesser extent still exists, a reluctance for GP’s to refer people for
assessment for dementia as there was a lack of perceived benefit from getting a diagnosis.
This is often referred to as ‘therapeutic nihilism’.
Early diagnosis
There are many reasons why getting an early diagnosis may be useful for people – using
appropriate resources, you find helpful, list some reasons why it is helpful for people to get
a diagnosis and why this is better if they are assessed earlier on in their condition.
It is important to get a diagnosis earlier because
Early diagnosis helps in making the condition better
It helps in delaying the symptoms and makes the stages less worse
It provides the health care providers, the carer and the patient himself of what is going on
and what must happen next so they can make important decisions before hand
Reflecting on what you know so far about dementia, what might be patient’s reasons for not
wanting to know if they have dementia or not? Do this from the perspectives of both
someone who is not willing to be assessed and for someone who is willing to be assessed
but does not want to be told the outcome.
The patient who is willing to be assesses would like to know before hand of any bad thing
that is going to happen. While someone who does not want to be assessed fears of the
potential deterioration of brain cell death and the deteriorating conditions associated with it
How are people assessed?
NICE guidelines state that a diagnosis of dementia should be made only after a
comprehensive assessment, which should include:

History taking
Cognitive and mental state examination
Physical examination and other appropriate investigations
A review of medication in order to identify and minimise use of drugs, including over‑the‑
counter products, that may adversely affect cognitive functioning

GP role
Initially most people would go to see their GP if they or a member of their family had
concerns about their memory. There has over the last few years been a drive to routinely
screen high risk groups i.e. over 65s, often as part of other screening / annual checks.
They would undertake a screening tool for cognitive impairment, these are much shorter
than full assessments and are just used to check for possible memory problems, not to
assess for a diagnosis. There are several different tools available the below tool are available
on blackboard in the supporting information section, they are also available online.

11
6CIT

GPCog
These would then give the healthcare professional an indication as to the severity of the
cognitive impairment to help inform their decision as to whether to refer or not.
Having looked at these tests, suggest some reasons other than dementia why people may
struggle to answer these correctly:

People may struggle to answer these questions correctly because of the fear of what the
diagnosis reveals or they may have memory problem due to sleeplessness, anxiety,
depression or delirium.

NICE guidelines [CG42] (2006) recommend the GP routinely carry out a physical examination
and order a number of blood tests listed below:
Routine haematology (including full blood count, ESR)
Biochemistry tests (including electrolytes, calcium, glucose, and renal and liver function)
Thyroid function tests
Serum vitamin B12
Folate levels.
NICE Guidelines also recommend that if clinically indicated that the following tests should
also be ordered:
Mid-stream urine
Syphilis serology or HIV
Chest X-ray
Electrocardiogram (ECG)
For the below tests state what this test is for and why it is important that this is checked at
this point as part of an assessment for dementia. It is suggested that you look at the
‘Investigations for memory loss’ document on the supportive information section of
Blackboard.
Test What is this testing for? Why is this important in relation to
memory problems?
Full blood count To rule out amnesia and To confirm that memory problem is not
infection because of dementia

Glucose Hypoglycaemia and They may affect the memory

hyperglycemia

Liver function Hepatic disease To rule out memory problem due to

hepatic disease

Calcium hyperparathyroidism, Hyperparathyroidism may have a role in

other causes of memory problems
hypercalcaemia

12
 Folate levels To rule out folate Increased folate level may result in
deficiency memory problems

Mid-Stream Exclude bacterial infection Exclude the probability of memory loss

Urine due to bacterial infection

Memory clinics
Most people would be referred to a memory clinic for further assessment of their memory.
Memory clinics would only normally accept the referral when possible physical reversible
causes of confusion had been ruled out. These could include such causes as delirium, low
sodium, infections etc. The assessment in memory clinics would usually entail, cognitive
testing, mental state examination, history taking and often a brain scan.

Cognitive testing
The cognitive examination which takes place in a memory clinic would be more detailed
than the screening tools suggested earlier. Widely used assessment scales are:
Addenbrooke’s Cognitive Examination 3 (ACE3) (Hsieh et al, 2013)
Mini Addenbrookes Cognitive Examination (M-ACE) (Hsieh et al, 2015)
Montreal Cognitive Assessment (MoCA) (Julayanont, 2015)

The scales are available on the blackboard space for you.

It is evident that there are different length tests for cognitive impairment, suggest in the
space below what reasons there might be for using shorter or longer tests?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
The examination done in memory clinics may not be solely limited to these type of tests,
further specialist evaluations are also done by Occupational Therapists to assess the
person’s level of functioning and specialist psychology reports are sometimes required in
order to fully understand a person’s memory problems.
People with learning disabilities are more prone to developing dementia, however it is often
more difficult to assess as we do not know if any low scores on a memory test are due to the
learning disability or any developing dementia. They often require more specialist testing.
As well as cognitive problems, the nurses and other professionals would be looking for other
mental health problems such as depression. Read the article titled ‘Depression is linked to
dementia in older adults’ on Blackboard (Valkanova et al, 2017). In the space below, make
notes about why it is important that this happen.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Brain scans
As there is a clear biological component to dementia there are different scans, which can be
helpful to accurately diagnose dementia, the scans also rule out other causes such as a brain
tumour, subdural hematoma or stroke. These are recommended for most people who are

13
under investigation for memory problems however for some people it is not necessary or
not appropriate e.g. if memory problems are very advanced and scans would be distressing
for the person.

Below are some examples of scans to give an idea of what might be seen, often the results
are not as clear as the images

The first image (top left) shows a healthy brain.

The centre image is of marked Alzheimer’s, note the shrinkage of the brain and the
ventricles (large dark areas in the centre) have enlarged.
The image to the right shows some areas of damage as you might see in someone with
vascular dementia.
Often brain scan images are not as obvious as these shown, especially in milder severity
dementias are, a radiologist will inform the diagnosing clinician who will normally interpret
them.
There are different types of scan, which are used to diagnose dementia, in the table below
find out what each acronym stands for and state a key feature of how each type of scan
works.
Acronym Name Key feature of how this works
CT

MRI

SPECT

History taking
The history taking is vital to the diagnosis as scans and cognitive testing. The Royal College
of General Practitioners suggests the following key areas when taking a history about
memory problems.
Memory problems or forgetfulness: ask about short and long-term loss and for specific
examples.

Duration of the problem: how long is it since the problem was acknowledged/recognised?

14
Associated symptoms: mood, sleep, personality changes, self-care.
Change in functional abilities: work, driving, finances and household tasks.
Vascular risk factors.
Past medical and psychiatric history.

Suggests reasons why it is important for the duration of the problem to be ascertained.
Think about different causes of memory loss, what would it suggest if they had only had the
symptoms for a short time?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Diagnosis
A diagnosis of dementia can be made by any ‘appropriately skilled clinician’ (Burns et al,
2015) and following excluding other reversible causes of cognitive impairment. To make a
diagnosis the ICD 10 (WHO, states that a diagnosis should be made when there is evidence
of decline in both:
Memory and thinking, including orientation, comprehension, calculation, learning, capacity,
language, and judgement.

Impairment of personal activities of daily living caused by the decline in memory and
thinking.

It is recommended that there should be at least a 6-month history of decline to make a

confident diagnosis of dementia.

References
Alzheimer’s Research UK (2016) Alzheimer’s Disease. Retrieved from
http://www.alzheimersresearchuk.org/about-dementia/types-of-dementia/alzheimers-
disease/symptoms/
Bradshaw, J., Saling, M., Hopwood, M., Anderson, V., Brodtmann, A. (2004). Fluctuating
cognition in dementia with Lewy bodies and Alzheimer’s disease is qualitatively distinct.
Journal of Neurology, Neurosurgery & Psychiatry 75:382-387.
Hsieh, S., Mcgrory, S., Leslie, F., Dawson, K., Ahmed, S., Butler, C. R., Hodges, J. R. (2015).
The mini-addenbrooke's cognitive examination: A new assessment tool for dementia.
Dementia and Geriatric Cognitive Disorders, 39(1-2), 1-11. Retrieved from
http://dx.doi.org/10.1159/000366040
Hsieh, S., Schubert, S., Hoon, C., Mioshi, E., & Hodges, J. R. (2013). Validation of the
addenbrooke's cognitive examination III in frontotemporal dementia and alzheimer's
disease. Dementia and Geriatric Cognitive Disorders, 36(3-4), 242-50. Retrieved from
http://dx.doi.org/10.1159/000351671
Julayanont, P., Tangwongchai, S., Hemrungrojn, S., Tunvirachaisakul, C., Phanthumchinda,
K., Hongsawat, J. & Nasreddine, Z.S. (2015). The Montreal Cognitive Assessment—Basic: A
Screening Tool for Mild Cognitive Impairment in Illiterate and Low-Educated Elderly Adults.
Journal of the American Geriatrics Society.

15
Matias-Guiu, J. A., Cortés-Martínez, A., Valles-Salgado, M., Rognoni, T., Fernández-
Matarrubia, M., Moreno-Ramos, T., & Matías-Guiu, J. (2017). Addenbrooke's cognitive
examination III: diagnostic utility for mild cognitive impairment and dementia and
correlation with standardized neuropsychological tests. International Psychogeriatrics,
29(1), 105-113. Retrieved from http://doi.org/10.1017/S1041610216001496
National institute of clinical excellence (2006) Dementia: supporting people with dementia
and their carers in health and social care. Retrieved from
https://www.nice.org.uk/guidance/cg42
Valkanova, V., Ebmeier, K. P., & Allan, C. L. (2017). Depression is linked to dementia in older
adults. Practitioner, 261(1800), 11-15.
World Health Organisation (1992) The ICD-10 Classification of Mental and Behavioural
Disorders Clinical descriptions and diagnostic guidelines. Retrieved from
http://www.who.int/classifications/icd/en/bluebook.pdf

Person Centred Care

What is person centred care?
Person centred care means that the person is an equal partner in the planning of care and
that his or her opinions are more important and are considered respectful, not in the way
’what person says, goes’, but it does mean that we have to take into account what actually
people want and wish for when we plan and deliver their care. It is important to find out
what they have tried before, what they are willing to do now and what they can manage
over an extended period of time.
.…………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Tom Kitwood is famous for his person centred philosophy and caring for people with
dementia. Kitwood claims dementia is a form of disability, which will affect the person in a
unique way, due to the interaction of: the disease process; previous personality and life
history; and the quality of care the person receives. Therefore, as health professionals, we
cannot take away the disease but we can control the quality and care the person receives.
As discussed earlier, communication and challenging behaviour can be sometimes difficult.
It is essential that a person’s behaviour is an attempt at communication related to a need
and it is our responsibility of finding ways to meet that need. This in turn will maintain a
sense of personhood, as it implies respectful staff-resident interaction and individualised
care.
Negative interactions by others will lead to ill-being, which may accelerate the person’s
decline. Kitwood’s research identified a number of negative ways that professional carers
interact with people with dementia – this is called Malignant Social Psychology. Can you
list below at least ten?

(1) Intimidation(inducing fear through use of threats, (2) Withholding(…refusing

to meet and evident need), (3) Imposition( forcing a person to do something,
(4)Ignoring(carrying on in the presence of someone as if they were not there,
(5)Objectifying(treating a person as if they were a piece of dead matter
rather than real person they are, (6) Banishment(sending a person away

16
 physically or psychologically, (7)Invalidation(failing to acknowledge the
subjective reality of a person’s experience and feelings attached to it,
(8)Outpacing(providing information at a rate too fast for the person to
understand, (9)Stigmatisation(treating a person as if they were a diseased
object), (10)Labelling(using a disease or condition as an excuse for their
behaviour.……………………………………….………………………………………………………………
…..………………………….
…………………………………………………………………………………………………………………….…………………………
…………………………………………………………………………………………………………………………….…………………

List 10 categories of positive person work

…………Ten categories include:
(1)recognition, (2) negotiation, (3)collaboration, (4)play, (5) giving,(6) timalation,
(7)celebration, (8)relaxation, (9)validation,
(10)holding…………………………………………………….…………………………………………………..…………………
……….
……………………………………………………………………………………………………………………………………….………
…………………………………………………………………………………………………………………………………….…………

Recognising individual as unique

Person Centred Care is about personalising care and their surroundings. Offering shared
decision making in their care. Interpret behaviour from the person’s viewpoint and
prioritising the relationship to the same extent as care tasks.
Brooker (2007) expresses person-centred care in the form of an equation V+I+P+S
What does each stand for?
V Value people with dementia and those who care for them promoting their citizenship
rights regardless of age and cognitive
ability.………………………………………………………………………………………………………………….…………………
……..
I Treat people as individuals, appreciating that all people with dementia have a unique
personality, history and mental health and these effect their response to neurological
impairement.………………………………………………………………………………………………………..………………
……………………
P Look at the world from the perspective of people of dementia considering each person has
its own psychological validity and that empathy with this perspective has its own
therapeutic
problem…………………………………………………………………………………………………………..……………………s
S…Recognizing that all human life including people with dementia is grounded in
relationships and that people having dementia require a rich social environment which
compensate their impairment and foster personal growth opportunities.
…………………………………………………………………………………………………………….…………………………….

17
 Remember their personality maybe
concealed rather than lost …………………..

Watch this small video of Gladys with Dawn Brooker – provide a reflective piece of how you
see a unique and person centred approach to Gladys. What was good about this practice
and what skills interpersonal skills are needed to interact this way?
https://www.youtube.com/watch?v=CrZXz10FcVM

………This practice taught how one can be more interactive with the people dealing with
dementia by getting close to them,calm them down,make them feel that they are as
important as rest of the people by using gestures like
touching,singing,tawking.………………………………………………………………………………………………………
………………………………The interpersonal skill need to interact this way includes the gentle kind
behaviour with the patient in order to boost their morale and make them feel precious by
matching the intensity of your voice with their motions intensity,loving them like their
parents would be,having a soft gentle hand to place on their head close to their
eyes,reminiscing their old
memories………………………………………………………………..…………………………………………………….………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
…………

Think of a patient you have nursed who has dementia or use the knowledge and resources
you have so far gained from this workbook and reading materials. Can you list potential
18
care needs a patient may need who has dementia? (Think widely and holistically and
consider the family and carers needs too!)
……The potential care needs a patient maybe needing includes somebody who could tawk to
them gently about them being precious. Support oneself as a carer, help them with
everyday task, eating drinking .Provide them palliative care based in the needs and wish of
people suffering from dementia. On whole the positive gestures which could focus on
promoting their well
being.……………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
……

There are various strategies we can use to achieve person centred care, can you explain
what the following strategies involve – stating both their advantages and disadvantages.
Refer to NICE guidance for the reasons behind using such therapies.
Reminiscence therapy
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Validation Therapy
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Doll Therapy
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Reminiscence Therapy is supported by NICE (2015) and should be considered as the first line
of treatment. Such therapy shifts the focus of the disease and its symptoms and allows us
to recognise the person as an individual. Person Centred Care is about making the person
feel valued and content, preserving dignity and having a sense of belonging.
Be aware of the patient’s and client’s individual differences (personality, previous
intelligence, culture, social class etc) and interact with them in a way which reflects these.
Make sure prosthetic aids (hearing aids, spectacles, dentures) are present and properly
functioning. Try to ensure a good environment for communication – lights bright but not
too glaring, minimise extraneous noise.
Can you describe what malignant social psychology is? (Kitwood 1997)
…………MSP is a term for a range of behaviour that undermine the personhood and
wellbeing of people with dementia. It arises because people with dementia are seldom
visible or acknowledged in society which undermines the personhood of these
people……………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………………………………

19
References

Adams T & Gardiner P (2005) Communication and interaction within dementia care triads:
Developing a theory for relationship-centred care. Dementia 4(2): 185-205

Brooker D (2007) Person-centred Dementia Care: Making Services Better. London: Jessica
Kingsley Publications

Brooker D (2007) Person-centred Dementia Care: Making Services Better. London: Jessica
Kingsley Publication

Common Care Principles (2011)

Edvardsson D (2008) Person-centred care of people with severe Alzheimer's disease: current
status and ways forward. Lancet Neurol 7:362-7

Enerby, P (2002) Promoting communication skills with people who have dementia, the
essential dementia care handbook, London: Speechmark
James, I. (2011) Understanding behaviour that challenges: a practical guide to working with
people with dementia London: Jessica Kingsely
National Institute for Health and Care Excellence (2006) Dementia: supporting people with
dementia and their carers in Health and Social Care (CG42) NICE London
Nolan M, Davies S, Brown J, Keady J & Nolan, M (2004) Beyond person-centred care: a new
vision for gerontological nursing. International Journal of Older People’s Nursing 13 (3a): 45-
53

Stokes, G. (2000) Challenging behaviour in Dementia: a person centred approach. Oxford

Speechmark

Turner, S. (2005) Behavioural sysmptoms of dementia in residential settings: a selective

review of non-pharmacological
Ward, R (2005) What is dementia care? Dementia is communication Journal of Dementia
Care 10(5) 33-35

Communicating with people with dementia

People who experience dementia are able to communicate with us. It is up to us to

understand the meaning behind that communication. People with dementia can see the
world from a different perspective to us. It is our responsibility to enter that reality.
Effective communication is at the centre of providing person centred care for people with
dementia. There is always an opportunity to engage meaningfully with people with
dementia.

The basic principles of communication must be considered:-

20
An exchange can have value even if it does not make sense to us.
Nonverbal interaction is often the most important communication channel.
Always assume that the person understands at some level comments made in their
presence.
Good listening is a fundamental skill
Communication is a two way street …

Can you list what the following terms mean; these are common difficulties dementia
patients encounter:-
Expressive Dysphasia
……………………………………It is a type of aphasia characterized by partial loss of ability to
produce language although comprehension generally remains
intact.……………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………
Receptive Aphasia
…………………………………It is a type of aphasia in which individuals have difficulty in
understanding of written and spoken
language…………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
…………………………………………………………………………………………………………………………
Dysarthria
……………………It is a motor speech disorder resulting from neurological injury of the motor
component of the motor speech system and can be mild or
severe……………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………………………
Dysphonia
……………………It is a voice disorder. It causes involuntary spasms in the muscles of the voice
box or
larynx……………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………………………
What are hallucinations?
……………………………………………Hallucinations are the sensations that appear to be real but are
created by your own mind.They can affect all five of your
senses.……………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………
Agnosia?
………………It is an inability to recognize objects such as an apple or a key, persons , smells or
sounds despite normal functioning
senses.……………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
…………………………………………………………………………………………………………………………………………

21
Common language problems in people with dementia
Whilst everyone is unique there are some common language problems, which people with
dementia and their carers encounter.
Receptive dysphasia / comprehension problems
People often struggle to understand what is said to them, sometimes this is due to them
needing additional time to process what was said. When there are complex questions
and/or people’s memory is very poor they cannot think through the answer whilst recalling
the question asked. General advice when speaking with people with memory problems:
Always approach from their line of vision
Introduce yourself and use the patients preferred name
Establish eye contact
Use active listening skills to show the person you are listening to them
If acceptable to the person – use touch to reinforce your presence
Use gestures where appropriate to give cues as to what you are asking people
Speak slowly and clearly – however avoid sounding patronising
Speak at a volume they can hear – try to avoid shouting as this can sometimes sound
aggressive
Use short and simple sentences and avoid asking more than one question at a time.
Allow time for the person to process what you have said
Do not be embarrassed by emotion, allow the person to express that emotion.

Repetition
People with memory problems often cannot recall that they have asked a question or that
they have received an answer for this. This tends to result in them repetitively asking the
same question or saying the same thing. This can be very draining and frustrating for carers.
Consider a family carer for a person with dementia who, for every minute for the last 3
hours, has asked what time it is. The person with dementia is unable to recall the answer
given to them and will immediately after being told the time would ask the question again.

What response might the carer eventually give?

The carer should not get frustrated , Instead should make an eye contact with the people
and allow the person to process what you have said by changing and opting different tactics
to make them memorize anyway, they could,Change the words,they would try to mimic
how one uses the object.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

How might that make the person with dementia feel?

……That might make the person feel like they are not being mistreated, they are important
and you care for them no matter what the conditions
are.…………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Word finding
Another common problem with language are word finding difficulties. This is when the

22
person wants to say something but cannot remember what that word is. This is more easily
relatable to understand how frustrating this is as most of us have at one time or another
struggled to bring a word / name to mind. Often people with dementia will be aware that
they cannot recall the word they are trying to say which leads to an increase in frustration,
which can build as the day goes on.
Ways to help people with word finding difficulties
Give the person time to answer, don’t rush them.
If you are SURE of the word they are trying to say you can suggest it to them (don’t make
repeated guessed as this is likely to be unhelpful to them).
If they seem to be describing an object ask them something about it i.e. what do you use it
for / where would you find it?
If they are very stuck, becoming distressed and you have a general idea what they are trying
to say, you can ask them to continue with what they are telling you, sometimes the overall
message can be understood or the word comes to them.

Substitution / Confabulation
Sometimes when people cannot remember the word they want to use they will pick another
word they are able to think of. Sometimes this can be an appropriate substitution e.g.
Instead of saying they will “warm up a meal” they say they will “ratify the meal”; whilst the
choice of word is unusual the overall message can be understood.
Other times people will substitute vague words such as ‘thingy’ to describe what they are
looking for (termed circumlocution) or use inappropriate words in place of what they want.
E.g. “can I have my cabbages?” when they are asking for their slippers.
Ways to help overcome this barrier are:
If the meaning is clear but choice of word is unusual then do not question it and continue
the conversation.
If you are not certain of what they have asked, clarify this with them e.g. ‘So you’re looking
for the bathroom, is that right?’
Often when people use vague words they will unconsciously mime how you use the object,
this can give you clues to what they are talking about.
When the meaning cannot be understood or has been misunderstood – apologise that you
do not understand what they mean, ask them to explain again, what they need.

People who are unsure what is going on around them are often fearful about what is
happening, this can be especially true in unusual situations such as hospital wards. Think
about how you can use both verbal, non-verbal and environmental cues / strategies to help
manage this.
Verbal
…………..…Verbally calm down the patient by tawking to them gently, answering all their
questions one by one, matching the intensity of your voice with the patients asking
intensity, do not use large statements, use easy clear short statements,ask the patient
soothingly if you cannot get what are they exactly asking,try to change the conversation
topic by being friendly to them, thus make them feel important with your
words.……………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
…………………………………………………………………………………………………………………………………………

23
Non-verbal …………………………Use gestures and hand movements for interacting with the
patient,put your hands gently on to the patients face near the eyes,make an eye contact
with them and make them feel like you are the one whose as close to them as their parents
would had been,if
alive.………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………………
Environmental
………………………Try to make environment comfortable to them by singing songs with
them,making them focus on the objects specifying the patients personal interest,make
things appealing to
them………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………

Sensory problems
People with dementia are just as prone to the same sensory deficits as other people, given
the patient group tends to be older people problems with sensory deficits are common. For
the below problems list ways you can think of overcoming these, try to list as many as you
can think of:
Poor hearing (including deafness)
…………..…………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Poor eyesight (including blindness)
…………..…………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

For the below case studies suggest what the keys issues are and what could have been done
differently, as well as the strategies above this video maybe helpful for you:
https://www.youtube.com/watch?v=mG5CiaQByVU
Ken is an 86-year-old man with moderate dementia and is a resident in a busy, rather
traditionally run nursing home. Amy is a 22-year-old Care Assistant who has been working
at the home for less than 3 months. The nurse in charge tells Amy to get Ken dressed in
time for breakfast. She goes to his room, goes in without knocking and says, “Sister says
you must get dressed. Here, let me take your pyjama top off”. She then begins to unbutton
Ken’s pyjamas. Ken stiffens and resists, saying, “I don’t want to get dressed”. Amy replies,
“Sisters said you’ve got to”, and carries on. Ken resists further, trying to push Amy’s hands
away. Amy gets more frustrated and says sternly to Ken, “Stop behaving like a baby”. She
leans over again to try to pull Kens pyjama jacket off and Ken grabs her hair and tugs it hard.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

24
Margaret is a 72-year-old woman who mobilises in a wheelchair; she has attended a day
unit to have some investigations completed. She is watching television in the waiting room
when a Jim, a member of staff, takes the brakes off her wheelchair and starts to move her
backwards; as he does, he says, “Susan isn’t it? Just taking you for your ECG love, be back
soon enough”. He pushes her to the cardiology department and leaves her in the waiting
room there after booking her in. When he arrives back at his unit he is informed that he has
taken the wrong patient, he protests that she did not say anything when he asked her name.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Behaviours that challenge

All behaviour is a form of communication. Someone waving at someone else can
communicate that they want to get their attention; someone kicking a door suggests that
they are frustrated and want to leave.
Many leading authorities on dementia (Graham Stokes, Jiska Cohen-Mansfield, Tom
Kitwood and Dawn Brooker) endorse the belief that behaviours that challenge are as a
result of the person having needs that are unmet which they are unable to communicate in
other ways.
One way to understand this is to
imagine that skills are golf clubs and
the person, by virtue of having
dementia, has a hole in their golf
bag. As they move around the
course, they drop their golf clubs and
so have to just use whichever ones
they have left, even if they are not the right ones to use. People with dementia, as the
illness progresses, lose the abilities such as expressing that they are in pain, and ask to go to
the toilet or tell us that they are thirsty. Therefore, they try to do this in the way they are
best able, they may do this in the form of searching around for something, banging on
furniture, hitting out at carers etc.
Some of these needs we can anticipate - we know people get thirsty so we can made drinks
on a regular basis or have them readily available, other needs are more difficult to assess.
Look at the short case studies on the next past and suggest what the behaviours could be
communicating.
Some helpful resources: (those in bold are available on Blackboard)

Dementia Toolkit - Northamptonshire

Understanding and Treating Behaviour that Challenges
Handling challenging behaviour in dementia -
https://www.youtube.com/watch?v=EKiroz3IySw

25
A lady holding her left arm close to her body, she appears quite withdrawn but when
anyone tries to touch her left arm she hits them and starts crying. What might be the
problem? How could you address this?
……………..………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

A gentleman in a care home who is holding his groin area a lot, when you assist him to the
toilet you notice he is grimacing when he is passing urine. His urine also has a strong odour
and appears quite dark. What might be the cause of this? How could you help?
……………..………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

A woman with moderate dementia is in a care home, everyday in the mid afternoon she
tells you that she needs to go to get her children and gets upset that staff won’t let her
leave and has been aggressive at times in her attempts to leave the home. Her children are
adults however she believes them to be of school age. What might she be thinking/feeling?
What could you do to try to help her?
………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………………………………..
……………………………………………………………………………………………………………………………………………
A gentleman on a dementia ward comes up to you, telling you he needs his ‘doings’. He
mimes holding something in two hands and putting them towards his eyes. What might he
be looking for? Describe how you would help him.
………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………………………………..
………………………………………………………………………………………………………………………………………………

The term wandering is often used to describe people with dementia walking without an
obvious purpose. This is often a cause of concern for family members and professionals and
is often a reason for people to be admitted into 24 hour care settings. People with dementia
very often do have a purpose to why they are walking (even if this is not rooted in our
reality) such as trying to go home, pick kids up from school or just to go out and enjoy a
walk. Read the article ‘When does wandering become walking’ on Blackboard and suggest
three ways people with wandering can be supported.
…………………………………………………………………………………………………………………………………………….…
…………………………………………………………………………………………………………………………………………….…
………………………………………………………………………………………………………………………………………………

26
Life story
People present with distress in very different ways, the best way to assess this is to know
how they presented in the past so you can see how they have changed. If you have not
previously met the person before, speaking with family and carers can be helpful as can life
stories which are records of people history, what is important to them, likes, dislikes etc.
There is no ‘best’ way to gather someone’s life story, everyone’s life is unique and what
works best for one person might not work well for another. However a popular way of
recording things about people’s life is the ‘This is me’ tool produced by the Alzheimer’s
Society (available on Blackboard). Have a look at this and reflect on what strengths and
limitations this may have.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………..……………………………………………………………………………………

Other considerations
Touch
Touch is an important tool in communicating with patients with dementia. It can be very
useful in providing reassurance and calming people however sometimes people do not like
being touched and this can make them more agitated. Suggest ways you could assess how
someone might respond to being touched.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Multi lingual
People whose first language is not English can, as dementia progresses, can begin to revert
back to their first language even if they have been able to speak English very well for many
years. Also some people who you will meet may have never spoken English. Suggest ways
you could overcome this language barrier.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Family and carers

Often family and friends of people with dementia will not have the same level of training
and experience which professionals have. Describe how you might help family of people
with dementia to better interact with their loved one.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Family and friends of people with dementia can also have their own communication needs /
difficulties, state at least 3 problems which you may face when speaking to family and
friends and how you would overcome these.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

27
………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………………………………..
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Learning Summary – Level 1

In your own words what is dementia?

What are the symptoms of dementia?

State at least 4 other problems which could be misidentified as dementia?

State 3 different types of dementia and briefly describe them

What does VIPS stand for?

V
I
P
S

State three communication problems someone with dementia may have and ways you can
overcome these.

Why is having information about people’s life helpful?

What do you intend to find out more about to help you understand people with dementia
better?

28
Dementia risk reduction and prevention
Health promotion
There are a number of ways in which people can help reduce their risk of dementia (NHS,
2014; (National Institute on Aging, 2016; Smith et al, 2010)
• Ensure they get regular exercise (bearing in mind physical limitations and existing
medical conditions).
• Eat a healthy balanced diet.
• Avoid smoking, or cut down if they are not ready to stop.
• Avoid drinking excessive amounts of alcohol. (recommended no more than 14 units
a week spread out over three days)
• Ensure health conditions such as diabetes, high blood pressure and vitamin B / folate
deficiency are well managed.
• Keep mentally active e.g. volunteer work, learning new skills, reading or doing
puzzles.
• Maintain social connections.
“If it’s good for your heart, it’s good for your head”
As you will notice, a lot of this advice is also used for heart health. This health advice is
shared because the brain is just as susceptible to problems with blood flow, such as the
build-up of cholesterol and high blood pressure, as any other organ. Vascular problems are
known to affect the development of both Alzheimer’s and Vascular dementia (Snyder et al,
2015). It can be useful for people to be able to make this link. This is because most people
are already aware of the advice to some extent and it is always helpful to reinforce health
promotion messages.

Diabetes is known to be associated with the development of dementia (Mehlig et al, 2014) it
is unclear if this is due to shared risk factors (obesity, lack of physical activity) or if there is a
causal link with the damage done to the brain as a result of high blood sugars (Hamed,
2017). Vitamin B12 and folate deficiency are also linked with progression of memory
problems (Blasko, 2012)
“Use it or lose it”
Whilst it is not yet fully understood it generally thoughts that keeping mentally active and
maintaining social links is found to be helpful as people who do not use skills often tend to
decline faster than those who stay mentally active (Hall et al. 2009). The expression use it or
lose it is often used as to describe this hypothesis (Salthouse 2006).
Case studies
Below are some scenarios to look through, suggest some advice, which you feel, may be
particularly helpful for them.

John is has been recently diagnosed with MCI he currently smokes 40 cigarettes a day and
goes to the pub at least twice a week to meet with his lifelong friends. He doesn’t think he

29
drinks excessively but tells you he often drinks about 5 pints of strong lager (3 units each)
every time he goes to the pub. He is prescribed vitamin B12 by his GP however, he often
forgets to take this and doesn’t see the point in it.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Mary has been concerned about her memory for some time, she used to be a cook for a
school but since she has retired she does not regularly go out anywhere other than to the
local shops to buy food. She still enjoys baking but tends to make the same things that she
does not have to really think about, this is often cakes, which she will eat by herself. She is
insulin dependent diabetic and has been told that her blood sugars are routinely high.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Making changes
It is often not enough to simply know that making changes could be beneficial to you, many
people smoke, drink excessively and eat a poor diet knowing that this is harmful to them.
People making changes to their behaviour
Watch this video on the Health Belief model
https://www.youtube.com/watch?v=6SfTbTkEozA

Suggest three reasons why people may not be motivated to change their behaviour to
reduce their risk of developing dementia
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Suggest three ways in which people could be motivated to change their behaviour
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Challenges to change
Different social and ethnic groups have different needs when it comes to making changes to
their lifestyle. There is some evidence that people from certain ethnic communities are at
higher risk of dementia than others are. For example, South Asian people (from countries
such as India and Pakistan) seem to develop dementia - particularly vascular dementia -
more often than white Europeans. South Asians are well known to be at a higher risk of
stroke, heart disease and diabetes, and this is thought to explain the higher dementia risk.
Similarly, people of African or African-Caribbean origin seem to develop dementia more
often. They are known to be more prone to diabetes and stroke. All of these effects are

30
probably down to a mix of differences in diet, smoking, exercise and genetic factors.
(Alzheimer’s society, 2017)

Read the article ‘Health promotion interventions for ethnic minorities’ available on
Blackboard and in the space below suggest some ways in which health promotion advice
can be tailored to these groups
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Whilst stigma around dementia exists in most if not all UK culture, different ethnic groups
also have different ideas around dementia. Read the ‘Dementia does not discriminate’
paper on your Blackboard space. Below write notes about how different cultures view
dementia
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

People from low-income households or who live is socially deprived areas are known to
have a poorer experience with dementia care. This group are known to have higher
mortality rates, have less contact with healthcare services and have poorer physical and
mental health generally. Suggest ways in which health promotion advice can be tailored to
this group, the report ‘Inequalities for people with dementia’ available on your blackboard
space. You can also use any other resources you find helpful.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Signposting
For your local area find out what resources are available to help with diet, exercise, stopping
smoking, keeping mentally active and staying socially connected. These can be in any form
and don’t necessarily have to be connected with a health service – be creative! Write down
what you find below
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Communicating the message

Communicating a message cannot a lways be done in the same way, as nurses we have to
adapt our language to suit the needs of our patient. For each of the different needs /
abilities below state how you would adapt how to communicate the health promotion
messages.
A person who is sight impaired
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
A person who is hard of hearing
………………………………………………………………………………………………………………………………………………

31
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Someone with mild memory problems
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Someone who does not speak English
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
A retired nurse (who does not specialise in dementia)
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

References
Alzheimer’s society (2017) Risk factors you can’t change. Retrieved from
https://www.alzheimers.org.uk/info/20010/risk_factors_and_prevention/116/risk_factors_
you_can_t_change

Blasko, I., Hinterberger, M., Kemmler, G., Jungwirth, S., Krampla, W., Leitha, T., & Fischer, P.
(2012). Conversion from mild cognitive impairment to dementia: Influence of folic acid and
vitamin B12 use in the vita cohort. Journal of Nutrition, Health & Aging, 16(8), 687-694.
Retrieved from http://doi.org/10.1007/s12603-012-0051-y

Hall, C. B., Lipton, R. B., Sliwinski, M., Katz, M. J., Derby, C. A., & Verghese, J. (2009).
Cognitive activities delay onset of memory decline in persons who develop dementia.
Neurology, 73(5), 356–361. Retrieved from
http://doi.org/10.1212/WNL.0b013e3181b04ae3

Hamed, S. (2017). Brain injury with diabetes mellitus: evidence, mechanisms and treatment
implications. Expert Review in Clinical Pharmacology, 10(4), 409-428. Retrieved from
http://doi:10.1080/17512433.2017.1293521

Mehlig, K., Skoog, I., Waern, M., Miao-Jonasson, J., Lapidus, L., Björkelund, C., Östling, S.,
Lissner, L., (2014) Physical Activity, Weight Status, Diabetes and Dementia: A 34-Year
Follow-Up of the Population Study of Women in Gothenburg. Neuroepidemiology, 42, 252-
259

Graham, W. V., Bonito-Oliva, A., & Sakmar, T. P. (2017). Update on Alzheimer's disease
therapy and prevention strategies. Annual review of medicine, 68, 413-430.
https://doi.org/10.1146/annurev-med-042915-103753

Netto, G., Bhopal, R., Lederle, N., Khatoon, J., Jackson, A. (2010). How can health promotion
interventions be adapted for minority ethnic communities? Five principles for guiding the
development of behavioural interventions. Health Promotion International, 25(2), 248-257.
Retrieved from http://doi.org/10.1093/heapro/daq012

32
NHS (2014). Can dementia be prevented?. Retrieved from
http://www.nhs.uk/Conditions/dementia-guide/Pages/dementia-prevention.aspx

Salthouse TA. (2006). Mental exercise and mental aging: Evaluating the validity of the “use it
or lose it” hypothesis. Perspectives on Psychological Science. 1(1), 68–87

Smith, D., Smith, S., de Jager, C., Whitbread, P., Johnston, C., Agacinski, G., Oulhaj, A.,
Bradley, K., Jacoby, R., Helga, R. (2010). Homocysteine-Lowering by B Vitamins Slows the
Rate of Accelerated Brain Atrophy in Mild Cognitive Impairment: A Randomized Controlled
Trial. PLoS One 5(9): e12244. Retrieved from
http://dx.doi.org/10.1371/journal.pone.0012244

Snyder, H., Corriveau, R., Craft, S., Faber, J. E., Greenberg, S. M., Knopman, D. & Schneider, J.
A. (2015). Vascular contributions to cognitive impairment and dementia including
Alzheimer's disease. Alzheimer's & Dementia, 11(6), 710-717.
All-Party Parliamentary Group on Dementia (2013). Dementia does not discriminate.
Retrieved from:
https://www.alzheimers.org.uk/downloads/file/1857/appg_2013_bame_report

Health and Well-being in Dementia

The Future`s Ours To Keep

Eyes that sparkle, yet lost their shine,
Memories gone that once were mine,
Slowly ebbing into Abyss,
Seeping out into the midst,
Wanting, WILLING time to cease,
Praying for a mindful peace,
Dementia envelopes your soul,
Dragging it to its blackened hole,
Everyday a horrific fight,
Grasping, reaching for the light,
Then from above, comes the ray,
The ray of light to save the day,
Across the skies is written pure,
Dementia Demon “WE HAVE A CURE”
Hearts will soar, and people weep,
At last the future, is ours to keep

Norm Mac (Dementia Champion and organiser of the ‘purple angel’ dementia awareness
charity)

Mental wellbeing

https://www.nice.org.uk/guidance/cg42/chapter/1-guidance

33
Read through the above guidance from NICE
Evidence suggests that people with dementia manage better if they remain active within
their community and family life.
Provide some ways this can be encouraged?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Medication can sometimes offer some relief for some people with Alzheimer’s disease who
are suffering from anxiety and distress. However, non-pharmacological options are
recognised as the frontline treatment which nurses can use to support people with
dementia.
Read ‘Changes in behaviour’ available on Blackboard
List and describe some tools that can support people with dementia. If you have seen any of
these in action, then reflect on their use.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Exercise
The Alzheimer’s society (2017) suggests that exercise can help with dementia by:
• Improving the health of the heart and blood vessels, which can reduce the risk of
high blood pressure and heart disease
• Reducing the risk of some types of cancer (particularly breast and colon cancer),
stroke and type 2 diabetes
 Improving physical fitness - maintaining strong muscles and flexible joints can help
people maintain Independence for longer

• Improving the ability to dress, clean, cook and perform other daily activities (as these
may be performed more effectively if someone is fitter or more supple)
• Helping to keep bones strong and reducing the risk of osteoporosis (a disease that
affects the bones, making them weak and more likely to break)
• Improving cognition - recent studies have shown that exercise may improve memory
and slow down mental decline
• Improving sleep
• Providing opportunities for social interaction and reducing the feeling of isolation
• Reducing the risk of falls by improving strength and balance
• Improving confidence
• Increasing self-esteem
• Improving mood.

Give some examples of exercise activities that can be encouraged in early stage dementia?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

34
Eating well

There are lots of reasons why maintaining a healthy diet might be difficult to maintain
Such as:
• Lack of appetite
• Difficulties cooking
• Problems with communicating or recognising hunger
• Poor co-ordination
• Getting tired more easily
• Difficulties with chewing and swallowing.

Develop a daily diet sheet for a balanced diet, considering the person’s individual’s likes
dislikes/culture within a diet.
You may find the document ‘A practical guide to eating and drinking’ available on your
Blackboard space to be helpful, feel free to use other sources to help you.

Breakfast Lunch Mid-afternoon Dinner Supper

Keeping warm
Read through the documents ‘Winter wrapped up’ from Age UK and ‘Staying Healthy’,
which are available on Blackboard
Reflect on how you can help people with dementia to stay warm.
What would be the challenges to this?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Tackling constipation
Constipation causes:
Consider in what ways you can help people avoid constipation, you may find what you read
in ‘Staying healthy’ to be useful.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Urinary Tract Infections (UTI)
UTI’s cannot only cause discomfort and pain but can increase symptoms of confusion and
disorientation.
Older people are more vulnerable for many reasons:
• They can experience a weakened immune system that comes with age and certain
age-related conditions.
• Weakened muscle tone in the bladder.
• Being less active which can lead to increased urine retention
• Less regular bladder emptying and incontinence.
• Dehydration

For most people the typical Symptoms of UTIs are:

• Urine that appears cloudy or dark
• Bloody urine

35
• Strong or foul-smelling urine
• Frequent or urgent need to urinate
• Pain or burning with urination
• Pressure in the lower pelvis
• Low-grade fever
• Night sweats, shaking, or chills

However, elderly people may not exhibit any of these sign of a raised temperature because
their immune system is unable to respond to the infection. In fact, older people may not
exhibit any of the common symptoms.

UTIs in the elderly are often mistaken for the early stages of dementia or Alzheimer's,
because symptoms include:
• Confusion or delirium-like state
• Agitation
• Hallucinations
• Other behavioural changes
• Poor motor skills or dizziness
• Falling
(Rowe, & Juthani-Mehta, 2013)

Consider the above information. As a nurse, how many you support an older person to
avoid developing UTIs?
....................................................................................................................................................
....................................................................................................................................................
....................................................................................................................................................
Sleep
Some people with dementia can develop problems sleeping; there are many potential
reasons for this, including:
• Sleeping during the day or retiring too early at night.
• Generally requiring less sleep, older people who are no longer in work often find
they do need the same amount of sleep they did when they were younger.
• Sometimes people wake during throughout the night. They may feel disorientated,
or try to get dressed and walk around. If the person has previously been an early riser due to
previous work commitments, they may believe they still need to do this.
• Sleep disturbance can affect the quality of life of a person with dementia and anyone
caring for them. It can have impact on a person's wellbeing, and can lead both the person
with dementia and those caring for them to become more tired.
• Sleep problems are linked to disruption to a person's body clock.
Some people experience a phenomenon known as 'sundowning'.
Read the article ‘Sundowning and Circadian Rhythms’ on Blackboard
Write a short description of what the term ‘sundowning’ refers to and how someone caring
for a person with dementia can support them with this.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

36
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

People with dementia with Lewy bodies tend to have a particular kind of sleep problem:
‘rapid eye movement sleep behaviour disorder’. It may be one of the first signs of the
condition.

Treating sleeplessness:
It is always best to try promoting better sleep without using hypnotic/sedative medication.
A doctor should assess the person to rule out any other conditions that may be causing
disturbed sleep. For example untreated pain, low mood/anxiety or sleep apnoea.
Spend some time considering these and how they can affect someone's sleep pattern.
Some ways to help overcome sleeplessness:
• Encourage the person to limit daytime napping
• Set the alarm for the same time every morning and get up when it goes off
• Encourage them to avoid tea and coffee from lunchtime onwards as they contain
caffeine.
• Avoid alcohol at night
• Make sure the bedroom is comfortable and not too bright at night
• Limit the use of social media and television in the room.

Pharmacological approaches
If non-pharmacological approaches have not worked, medication can be given to help
someone sleep. This can reduce the risks involved in getting up at night, and the strain this
puts on carers.
Two types of drugs that can help with sleep problems are benzodiazepines and 'Z' drugs (i.e.
Zopiclone, Zolpidem, Zaleplon). Doctors usually prefer to prescribe one of the 'Z' drugs
rather than a benzodiazepine.

However, medications should be used for a short period. Sleep medication (hypnotics) does
not generally work very well in people with dementia and most drugs have significant side
effects. Often, the risks associated with taking sleep medication are greater than any
possible benefits.
Using the above information plus any additional sources, state why non-pharmacological
approaches to sleep problems might be preferred.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Hearing Loss
It appears there is a link between hearing loss and dementia. One study suggests that
dementia symptoms worsen with the severity of the hearing loss (Lin et al 2011). The
reasons for this relationship are not clear, but communication difficulties may be one
reason, as both hearing loss and dementia can make communication more difficult.
As both hearing loss and dementia can cause social isolation, it is essential to recognise and
respond sensitively to anyone experiencing hearing loss. Hearing loss may worsen any

37
communication problems, which in turn, may lead to an increase in frustration and
agitation.
Here are some basic tips from Action on Hearing Loss:
• Make sure hearing aids are checked every day to make sure they are working and
that the person is wearing them correctly.
• Learn how to use the t-switch and controls on hearing aids, how to change batteries
and how to clean hearing aids
• Make sure arrangements are in place for hearing aid re-tubing, repairs and battery
replacement. Local audiology departments should be able to help with this.
• Try to minimise the number of lost hearing aids, and ensure that lost hearing aids are
replaced as quickly as possible.
• Get to know who to consult (for example a GP or nurse) to examine ears for wax and
to arrange ear syringing, where appropriate.
Using what you know and what you have read above and in any other places, make some
notes on why you feel it is important to consider hearing loss for people with dementia:
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Eyesight
In much the same way as hearing loss can add to confusion and disorientation, so can
problems with eyesight. It can increase confusion in people with dementia by making it
harder for them to recognise people or objects, move safely around their environment and
enjoy usual activities, like watching TV or hobbies.
Optometrists are able to assess sight, even for people in the later stages of dementia, using
specially developed techniques.
Think of ways someone's eyesight maybe affected?
....................................................................................................................................................
....................................................................................................................................................
....................................................................................................................................................

Consider ways, which you can help (particularly if the person is not in their own
environment)?
....................................................................................................................................................
....................................................................................................................................................
....................................................................................................................................................

Pain
Pain management is an often overlooked area of dementia care, particularly in the later
stages. Read this webpage and fill in the below information.
Read the article ‘Pain and behavioural problems in general hospital wards’ on Blackboard
Why is pain management important for the person with dementia?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
How can you recognise that someone is in pain?

38
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
How can you address this?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Other areas
Read through all the information provided and alongside your own research make some
notes on the importance of each of the following areas and how you might help the person
to ensure these health needs are addressed:
Healthy teeth and gums
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Foot care
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Bone health
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Depression and anxiety
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Promoting good health and independence
Look up information on the following and state how these would be helpful to people to
dementia.
Check-ups
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Dementia friendly communities.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Signage
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Purple butterflies
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

39
Assistive Technology
Please review the following website, in particular the ‘Find a product’ section.
www.atdementia.org.uk
Consider the uses of these technologies and document four areas where you think they may
be useful:

You have the first one completed for you:

1. Talking Alarm Clock: Allows people to be aware of the time of day and maintain
independence when keeping appointments. Especially useful when the person can no
longer tell the time themselves.

2.……………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

3.……………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

4.………………………………………………………………………………………….…………………………………………………
………………………………………………………………………………………….……………………………………………………
………………………………………………………………………………………………………….……………………………………

Families and carers as partners in dementia care

Define what is meant by an informal carer
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Find an estimate of how much unpaid care saves the UK economy each year
………………………………………………………………………………………………………………………………………………
It is estimated that about two thirds of people with dementia live in the community (SCIE,
2015). This means that the majority of people with dementia are either live with family or
are live alone, usually supported by family and friends. Therefore it is key that we recognise
the contribution, knowledge and skill of informal carers when we plan care.

SCIE (2015) About dementia. http://www.scie.org.uk/dementia/about

Watch this video and answer the following questions
https://www.youtube.com/watch?v=bIeFH89GD9k

What impact does the informal care giver role often have on people?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Often people struggle with the change in role from being spouse / child to being the primary
care giver. What impact do you think this role change could have on people’s relationships?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

40
What particular problems do people from black and minority ethnic communities face with
regard dementia care? (The documents ‘Dementia does not discriminate’ and ‘Dementia
and ethnicity’ may be helpful)
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Watch the following videos and consider what impact dementia has on young carers:
https://www.youtube.com/watch?v=Fm9YsZs06fM
https://www.youtube.com/watch?v=eCxAK-eDp5c
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Scenarios
Scenario 1:

Jenny is a 68 year old woman with dementia living at home by herself supported by her
daughter Karen. Karen takes her mother shopping each week, she has noticed that Jenny is
no longer able to correctly manage money and has in the past just handed her purse over to
the cashier at the shops, Karen now helps her with her money. Karen has arranged for a
carer to visit daily to help his mother with washing and dressing as well as prompt her to
take her tablets. One night Karen gets a telephone call from the police to inform her that
they have found Jenny out walking in the early hours of the morning wearing only her
nightie and she had been taken to A&E. When Karen goes to meet her at hospital she finds
that Jenny is notably more confused than normal and is aggressively refusing to allow staff
to take blood tests. Karen calms her mother down and staff are able to take her blood. She
is found to have an infection and needs antibiotics, as it is still the early hours of the
morning Jenny’s GP surgery is closed for the A&E staff to contact, staff were going to start
amoxicillin however Karen informs them that Jenny had an adverse reaction to this in the
past and so they choose another medication. Jenny is successfully treated and returns
home.
Whilst Jenny lives by herself what impact would it have for Jenny if Karen was not able to
support her?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Scenario 2:
Bob and Clive have been together for the last 40 years and were one of the first couples to
have a civil partnership when this became legal. Neither have any other close family. Bob
has vascular dementia and as a result lacks capacity to make decisions about his care and
treatment. He needs prompting with washing and dressing and has problems with sleeping
at night, tending to nap during the day, this has been ongoing for some time and all
medication and non-pharmacological options have been exhausted to try to alleviate this.
Clive has ischaemic heart disease and Parkinson’s disease which is worsening over the last
few months. Clive has recently suffered a heart attack which has been partially attributed to

41
the carer burden and lack of sleep. Carers were put in place Bob does not engage with
carers in the home tending to send them away even if Clive protests to this.
Bob has always said “I would rather die than go into a care home” and it is his wish to stay
with Clive. It is agreed that Clive cannot continue to care for Bob, however, it is known that
a move into care homes tends to result in a decline in people’s cognitive abilities.
What do you feel are Bob’s needs?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
What do you feel are Clive’s needs?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
What do you think would be the best option in this scenario? What impact will this have?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Equality and Diversity

This is the statement from NICE (2006)

Principles of care for people with dementia
Diversity, equality and language

People with dementia should not be excluded from any services because of their diagnosis,
age (whether designated too young or too old) or coexisting learning disabilities.
Health and social care staff should treat people with dementia and their carers with respect
at all times.

Health and social care staff should identify the specific needs of people with dementia and
their carers arising from diversity, including gender, ethnicity, age (younger or older),
religion and personal care. Care plans should record and address these needs.

Health and social care staff should identify the specific needs of people with dementia and
their carers arising from ill health, physical disability, sensory impairment, communication
difficulties, and problems with nutrition, poor oral health and learning disabilities. Care
plans should record and address these needs.

Health and social care staff, especially in residential settings, should identify and, wherever
possible, accommodate the preferences of people with dementia and their carers, including
diet, sexuality and religion. Care plans should record and address these preferences.

People who are suspected of having dementia because of evidence of functional and
cognitive deterioration, but who do not have sufficient memory impairment to be
diagnosed with the condition, should not be denied access to support services.

42
If language or acquired language impairment is a barrier to accessing or understanding
services, treatment and care, health and social care professionals should provide the person
with dementia and/or their carer with:

Information in the preferred language and/or in an accessible format.

Independent interpreters, Psychological interventions in the preferred language.
On the following pages are scenarios to explore issues related to equality and diversity.
Read each along with any supporting articles, which should help you to answer the
questions set.
Miss Richardson is in late stage Alzheimer's disease and up until recently has lived alone.
She was born as a male but has lived and worked as a female for nearly 50 years. Her family
have always been supportive. For her own personal reasons Miss Richardson decided
against full gender reassignment surgery, however has taken hormone medication for many
years.
Miss Richardson's condition has deteriorated to the point where her family are struggling to
care for her. Following an assessment she was moved into a care home. The care home is
local to her family and has a good reputation. Unfortunately, the carers in the home are
unsure how to support Miss Richardson and have been dressing her has a man; they have
also been addressing her as ‘Bill’, which is not only confusing but also very distressing for
Miss Richardson.
How could you challenge this practice with the home?
What important points would her plan of care need to include?
The documents ‘Safe to be me’ and ‘Fair care for trans patients’ on your Blackboard space
will be helpful.
....................................................................................................................................................
....................................................................................................................................................
....................................................................................................................................................
Mrs Akhtar is a woman who lives at home. She has lots of support from her family with her
needs. She has vascular dementia following a Cerebrovascular accident (CVA, stroke).
Recently both her daughters-in-law have returned to work and the family made the decision
to bring in outside carers. Mrs. Akhtar's daughter-in-law Shanaz had taken a day off work to
take her mother-in-law to her appointment when she became aware that Mrs. Akhtar had
been given non-halal food. Mrs. Akhtar's faith has always been a very important part of her
life and Shanaz feels Mum would be really distressed had she been aware.
You are a student nurse attached to a community team and have been asked to redress a
wound on Mrs. Akhtar's shin. When you enter the home, Shanaz is clearly distressed and
does not know how to pursue this matter. What can you advise? Is there anything else you
can do to support Mrs. Akhtar and her family?
You may wish to look at ‘Cultural competence in nursing Muslim patients’ on your
Blackboard space.
....................................................................................................................................................
....................................................................................................................................................
....................................................................................................................................................
....................................................................................................................................................

Mr Davis has been admitted onto your ward following a severe fall. He fell down the stairs
of his flat, which he had shared with his very elderly mother. Mr. Davis has Parkinson's

43
disease and Lewy body dementia. You come onto the ward one day and notice that Mr.
Davis appears more disorientated, distressed and tearful. He is holding what appears to be
the information insert from a medication package. You approach Mr. Davis to enquire after
his welfare. He reports he had asked about his medication and been given the sheet and
told to, 'read this'. Mr. Davis leans over to inform you he cannot read. Later when his
mother visits, she tells you he is 'a bit slow' and attended a special school as a child.
You may wish to now look at ‘Learning disabilities and dementia’ on your Blackboard space
How can you as a student nurse help Mr. Davis to learn what he needs to know about his
medications?
....................................................................................................................................................
....................................................................................................................................................
....................................................................................................................................................
....................................................................................................................................................

Younger people with dementia

Whilst most people who have dementia are older adults it can occur in working age adults,
typically 30 – 65 years old. This group represent 5% of the total number of people diagnosed
with dementia, however because of difficulties in diagnosing and recording this could
actually be notably higher.
Use this website and any other you find to help you understand the needs of younger
people with dementia:
https://www.youngdementiauk.org/
What particular problems / issues might younger people and their family face, which older
adults may not? (consider that they may have school age children)
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Support for carers
From NICE Guidelines (2017)
The experience of the diagnosis of dementia is challenging and distressing for both people
with dementia and their family members. It is important that, once consent is obtained,
family members are included in any care decisions as regards their relative. They should also
be given the opportunity to seek education and support for themselves during this period
and beyond.
Support and interventions for the carers of people with dementia

Assessment of Carer's needs

It is important carer's receive a full assessment of their needs. Health and social care
managers should ensure that the rights of carers to receive an assessment of needs, as set
out in the Carers and Disabled Children Act 2000 and the Carers (Equal Opportunities) Act
2004,[17] are upheld.
Those carrying out carers' assessment should seek to identify any psychological distress and
the psychosocial impact on the carer. This should be an ongoing process and should include
any period after the person with dementia has entered residential care.
Care plans for carers of people with dementia should involve a range of tailored
interventions. These may consist of multiple components including:

44
individual or group psychoeducation, peer‑support groups with other carers, tailored to the
needs of individuals depending on the stage of dementia of the person being cared for and
other characteristics support and information by telephone and through the internet.
Training courses about dementia should be available, services and benefits, and
communication and problem solving in the care of people with dementia involvement of
other family members as well as the primary carer in family meetings.
Consideration should be given to involving people with dementia in psychoeducation,
support, and other meetings for carers.
Health and social care professionals should ensure that support, such as transport or
short‑break services, is provided for carers to enable them to participate in interventions.
Carers of people with dementia who experience psychological distress and negative
psychological impact should be offered psychological therapy, including cognitive
behavioural therapy, conducted by a specialist practitioner.
Practical support and services
Health and social care managers should ensure that carers of people with dementia have
access to a comprehensive range of respite/short‑break services. These should meet the
needs of both the carer (in terms of location, flexibility and timeliness) and the person with
dementia and should include, for example, day care, day‑ and night‑sitting, adult placement
and short‑term and/or overnight residential care. Transport should be offered to enable
access to these services if they are not provided in the person's own home.
Respite/short‑break care of any sort should be characterised by meaningful and therapeutic
activity tailored to the person with dementia and provided in an environment that meets
their needs. Providing this in the person's own home should be considered whenever
possible.
If you were in a position to develop a service. What do you think a good carer’s service
would include?
....................................................................................................................................................
....................................................................................................................................................
References
AT Dementia - assistive technology for people with dementia. (2017). Atdementia.org.uk.
Retrieved 26 April 2017, from https://www.atdementia.org.uk/

Bangerter, L., Griffin, J., Zarit, S., & Havyer, R. (2017). Measuring the Needs of Family
Caregivers of People With Dementia: An Assessment of Current Methodological Strategies
and Key Recommendations. Journal Of Applied Gerontology, 073346481770595.
http://dx.doi.org/10.1177/0733464817705959

Bowes, A., Dawson, A., Jepson, R., & McCabe, L. (2017). Physical activity for people with
dementia: a scoping study.
Dementia: supporting people with dementia and their carers in health and social care |
Guidance and guidelines | NICE. (2017). Nice.org.uk. Retrieved 28 April 2017, from
https://www.nice.org.uk/guidance/cg42/chapter/1-guidance

Deschenes, C., & McCurry, S. (2009). Current treatments for sleep disturbances in
individuals with dementia. Current Psychiatry Reports, 11(1), 20-26.
http://dx.doi.org/10.1007/s11920-009-0004-2

45
Evidence review shows exercise may benefit people with dementia | Alzheimer's Research
UK. (2017). Alzheimer's Research UK. Retrieved 29 March 2017, from
http://www.alzheimersresearchuk.org/evidence-review-shows-exercise-may-benefit-
people-with-dementia/

For Sleep Changes | Alzheimer's Association. (2017). Alz.org. Retrieved 24 April 2017, from
http://www.alz.org/alzheimers_disease_10429.asp

Hearing loss - Dementia and sensory loss - SCIE. (2017). Scie.org.uk. Retrieved 26 April 2017,
from http://www.scie.org.uk/dementia/living-with-dementia/sensory-loss/hearing-loss.asp

Hearing loss in dementia. (2017). actiononhearingloss. Retrieved 26 April 2017, from

https://www.actiononhearingloss.org.uk

Hersch, E. (2008). Management of the behavioral and psychological symptoms of dementia.

Clinical Interventions In Aging, Volume 2, 611-621. http://dx.doi.org/10.2147/cia.s1698

Lin, F., Metter, E., O’Brien, R., Resnick, S., Zonderman, A., & Ferrucci, L. (2011). Hearing Loss
and Incident Dementia. Archives Of Neurology, 68(2).
http://dx.doi.org/10.1001/archneurol.2010.362

McAllister, T. (2001). Sertraline in the treatment of Alzheimer’s disease-related depression.

Current Psychiatry Reports, 3(5), 353-353. http://dx.doi.org/10.1007/s11920-996-0024-0

Mockford, C., Seers, K., Murray, M., Oyebode, J., Clarke, R., & Staniszewska, S. et al. (2017).
The development of service user-led recommendations for health and social care services
on leaving hospital with memory loss or dementia - the SHARED study.
Porsteinsson, A., Keltz, M., & Smith, J. (2014). Role of citalopram in the treatment of
agitation in Alzheimer's disease. Neurodegenerative Disease Management, 4(5), 345-349.
http://dx.doi.org/10.2217/nmt.14.35

Richards, M., Jarvis, M., Thompson, N., & Wadsworth, M. (2003). Cigarette Smoking and
Cognitive Decline in Midlife: Evidence From a Prospective Birth Cohort Study. American
Journal Of Public Health, 93(6), 994-998. http://dx.doi.org/10.2105/ajph.93.6.994

Rowe, T., & Juthani-Mehta, M. (2013). Urinary tract infection in older adults. Aging Health,
9(5), 519-528. http://dx.doi.org/10.2217/ahe.13.38

Society, A. (2017). Benefits of exercise and physical activity - Exercise and physical activity -
Alzheimer's Society. Alzheimer's Society. Retrieved 29 March 2017, from
https://www.alzheimers.org.uk/info/20029/daily_living/15/exercise_and_physical_activity/
2

Learning Summary – Level 2

State at least four ways people can reduce their risk of developing dementia

46
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Suggest three strategies to help people change their current behaviour to promote their
health
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Give two specific examples of ways in which the mental wellbeing of people with dementia
can be promoted.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

State three ways in which the physical health and wellbeing of people with dementia can be
promoted, then state why these are important.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

What effects does being a care giver have on family members of people with dementia?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………………………………..
State two barriers which may prevent people from black and minority ethnic groups
accessing dementia care services.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Give at least three problems faced by younger people with dementia which would not be as
apparent in older people with dementia.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

What do you intend to find out more about to help you understand people with dementia
better?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

47
Pharmacological interventions in dementia care

When an individual is diagnosed with dementia, there are several drugs, which could help.
These may differ depending on what is most appropriate to the person's needs, the stage of
their illness and the side effect profile of the medication.
These medications are usually prescribed only by specialist consultant psychiatrists,
geriatricians and neurologists. Once treatment has been started, it must be regularly
monitored by the team working with the person for a titration period then annual checks by
their GP.
For the most part current medications have no positive therapeutic effect on anything other
than Alzheimer’s disease.
In vascular dementia, for example, drug treatment is primarily used to prevent further
worsening of the condition by treating the underlying disease such as hypertension
(elevated blood pressure), hyperlipidaemia (high cholesterol) and diabetes mellitus.
Rivastigmine is sometimes used to support people with mild to moderate dementia in
Parkinson's disease.
It’s very important to remember that medications for Alzheimer’s are only for symptom
control and they only work for a limited time. Consequently, regular monitoring is the best
way to ensure the person is not being exposed to unnecessary side effects and people do
not take medication for longer than they are receiving benefit from it.

Treatment for Alzheimer’s disease

These include the following:
Acetylcholinesterase inhibitors
AChE-I are the first line treatment for and are recommended for people with mild to
moderate Alzheimer’s disease
• Donepezil
• Galantamine
• Rivastigmine -this is also licensed for treating mild to moderate dementia in

Parkinson's disease.
NMDA receptor antagonist
Memantine is the only drug used for dementia in this group, it is a glutamate receptor
antagonist, it is licensed for treating moderate to severe Alzheimer's disease, behavioural
problems and for patients who are unable to take acetylcholinesterase inhibitors.
Name Usual dose Max Key points
Donepezil
(Aricept) 10mg once at night 10mg Increased from 5mg after one month if
necessary to maximum 10mg
Galantamine
(Reminyl, Gatalin) 8-12mg twice daily Initially 4 mg twice daily for 4 weeks
increased to 8 mg twice daily for 4 weeks
Modified release- different dose
Rivastigmine
(Exelon) 3-6mg twice daily

48
Patches:
9.5mg/24 hour 6mg twice daily
Patches:
13.3 mg/24 h Initially 1.5mg twice daily, increased in steps of 1.5mg twice daily
Transdermal application possible – doses are 4.3 mg/24h initially then 9.5mg, increase to
13.3 if needed and well tolerated.
Memantine
(Ebixa)20mg
(if for cognitive impairment) 20mg Initially 5mg once daily, increase in steps of 5mg
weekly to maximum
Moderate to severe dementia in Alzheimer’s disease

How do they work

https://www.youtube.com/watch?v=durV0mnzPo4

Watch this Video. It is worth keeping the link and watching several times
Make notes for your own information
……………………………………………………………………………………………………………………………………………….
……………………………………………………………………………………………………………………………………………….
……………………………………………………………………………………………………………………………………………….
……………………………………………………………………………………………………………………………………………….

Side Effects
For each of the medications list common side effects which people may experience.
Donepezil
Galantamine
Rivastigmine
Memantine
What is the difference between a side effect and an adverse reaction?
……………………………………………………………………………………………………………………………………………….
……………………………………………………………………………………………………………………………………………….
……………………………………………………………………………………………………………………………………………….
Why is it important that these are recorded?
……………………………………………………………………………………………………………………………………………….
……………………………………………………………………………………………………………………………………………….
……………………………………………………………………………………………………………………………………………….

Other psychotropic drugs and dementia

Antipsychotics
Antipsychotic drugs are a group of medications that are usually used to treat psychosis in
people with severe and enduring mental health problems. They can also be prescribed for
behavioural and psychological symptoms in dementia. This is because in some cases they
can eliminate or reduce the intensity of psychotic symptoms, such as delusions and
hallucinations, and can have a calming and sedative effect.
Generally, they should be avoided in people with dementia as they can increase risks of
strokes and are associated with shorter life expectancy. If they are used this should only be

49
for short term treatment and risperidone is the only anti-psychotic that is licensed for this
use (up to 6 weeks).

Benzodiazepines
This group of medications are known as major tranquillisers or anti-cholinergic medications.
They are more commonly used to treat short-term symptoms of anxiety and as muscle
relaxants. It has long been established that they are not appropriate for the long-term
treatment of behavioural problems in people with Alzheimer’s (Hersch, 2008). However,
they do have a minor role to play, under strict supervision for short-term treatment of
anxiety, agitation and distress. Their use should be carefully monitored and never given
routinely.

Antidepressants and anticonvulsants

It appears that some medications, which were originally developed to treat depression
(antidepressants), can also be an effective treatment for behavioural and psychological
symptoms in dementia. Specifically sertraline and citalopram may help reduce agitation
(McAllister, 2001) (Porsteinsson, Keltz, & Smith, 2014). Antidepressants may also support
people with low mood, poor motivation and may as act as an adjunct to support people
with psychotic symptoms.

However, this is an area where there is a need for further research in the treatment of
behavioural and psychological symptoms in dementia.

Polypharmacy
Define what is meant by polypharmacy:
……………………………………………………………………………………………………………………………………………….
……………………………………………………………………………………………………………………………………………….
……………………………………………………………………………………………………………………………………………….
Why might this be a particular risk for older adults (not necessarily for people with
dementia)?
……………………………………………………………………………………………………………………………………………….
……………………………………………………………………………………………………………………………………………….
……………………………………………………………………………………………………………………………………………….

Administration
One of the biggest challenges around medication for people with dementia is concordance
(taking medication as prescribed). This is due to the obvious problem of people forgetting to
take it. Suggest ways in which people could be helped to ensure concordance.
……………………………………………………………………………………………………………………………………………….
……………………………………………………………………………………………………………………………………………….
……………………………………………………………………………………………………………………………………………….

Let us have a quick review of your knowledge (NO PEEPING!)

1. Which is the only medication indicated for moderate to severe Alzheimer’s?
…………………………………………………………………………………………………………………………………………..
2. What is the name of the anti-psychotic licenced for short term use in dementia?
…………………………………………………………………………………………………………………………………………..

50
3. What is a common side effect of Rivastigmine?
…………………………………………………………………………………………………………………………………………..
4. Why are medications for Alzheimer’s reviewed?
…………………………………………………………………………………………………………………………………………..
5. What is the name of the group of medications usually used to treat mild to moderate
Alzheimer’s?
…………………………………………………………………………………………………………………………………………..

Law, Ethics and Safeguarding

Define what is meant by ‘Informed Consent’

……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
Define what is meant by ‘Capacity’
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………

The Mental Capacity Act (2005) has 5 principles, which are:

• We must presume people have capacity (until assessed otherwise).
• People must be supported to make a decision.
• People should not be assessed as lacking capacity because they make an unwise
decision.
• Any decision made for people must be made in their best interests.
• Decisions made should be done in the least restrictive manner.
We will explore these principles in more detail

Below are some resources which you may find helpful:

Mental Capacity Act 2005 – available on Blackboard space
Mental Capacity Act: Code of Practice - available on Blackboard space
Power of attorney
http://www.ageuk.org.uk/money-matters/legal-issues/powers-of-attorney/

Youtube series on Mental Capacity Act

https://www.youtube.com/channel/UCEU2At0NW8Y5_RIqfQdJyuQ

Presume capacity
People with dementia do not, by sole virtue of their diagnosis, lack capacity to make any
decisions about their life. Assessments of capacity should be decision specific, i.e. People
may not be able to make decisions about financial matters but may be able to make choices
around where they live. The assessment for capacity can be done by anyone and are
normally done by whoever is the lead for the decision being made e.g. decisions for

51
medication are assessed by the prescribing doctor, decisions around personal care are made
by the nurse going to provide this care.

For someone to be assessed as lacking capacity they must first have

‘an impairment of, or a disturbance in the functioning of, the mind or brain’
This can be a permanent or temporary impairment / disturbance. Suggest three reasons
why people may have a temporary impairment or disturbance of the mind or brain.
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
Secondly there is a functional test whereby a person must be able to carry out all four parts
in order to be assessed as having the capacity to make the decision, list them below:
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………

Support people to make a decision

For anyone to make a decision they should have all the facts, this is termed ‘Informed
consent’. For example to make a decision about whether you should have surgery you
should be made aware of all the risks, not just the benefits of this. Some people need
additional support in order to understand all the relevant information pertinent to that
decision. If someone has memory problems it does not automatically make them unable to
make decisions, they may just need additional support in order to have all the information
available to them at the time they make the decision; even if they do may not remember
the decision later on. Even if someone does ultimately lack the capacity to make an
informed choice they should still be involved and their opinion taken into account.

In the space below describe different ways you could support someone with dementia to
make an informed decision.
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………

Unwise decisions
One of the principles is around the person’s right to make an unwise decision. An example
of an unwise decision might be to choose to drink excessively at the weekend; this is known
to be damaging for your liver, increase cardiovascular risk factors and people may be
spending money on this which they could spend on other things, yet people often do decide
to drink excessively (even when sober). The key factor is that if they have capacity to make
the decision then they can make whichever decision they choose.

For the below scenarios state if you feel that the person is lacking capacity or if they are
making an unwise decision and elaborate on how you came to this conclusion.
Tim has a diagnosis of dementia, he also has type 2 diabetes and has been advised he needs
to limit his sugar intake or he may have to start taking medication. Tim is aware of this and
can readily tell you that he knows if his current diet continues he will have to start taking

52
tablets. Even so, he continues to have 5 sugars in his tea and regularly eats large packets of
sweets every day.
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………

Margaret lives in her own home, it is quite old and no maintenance has been done to the
house for many years. Margaret does not have any cognitive problems. Her home has
always been very cluttered and there are numerous trip hazards around her house including
rugs, frayed carpets and trailing wires. She has recently had a fall down the stairs and
sustained a fractured wrist. Her family feel that she should go into a care home so she will
be safe however she is refusing this stating she would rather die than go into a care home
and does not want to make any changes to her home or accept carers.
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………

Shazia has a diagnosis of dementia, she has been a strict vegan all her adult life. She recently
moved into a care home, when visiting one day her family found her eating a chicken leg.
When asked why she was eating it, she didn’t know what it was but she liked the taste of it.
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………

Best interests
If a person has been assessed as lacking capacity to make a particular choice this decision
can be made in the person’s best interests. Many people can be the decision maker, it is
usually the person who will carry out the action following the decision, this can range from a
carer deciding for the person what they should wear that day to a surgeon deciding if they
should perform surgery on someone.

There are a number of principles which should be taken into account when making a best
interest decision. Read chapter 5 of the Mental Capacity Act: Code of practice and write
down the main points which should be taken when making a best interest decision:
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
There are certain circumstances when a best interests decision would not made for
someone who lacks capacity. Suggest at least 3.
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………

Lasting power of attorney

State what is meant by a lasting power of attorney (LPA)

53
……………………………………………………………………………………………………………………..………………………
………………………………………………………………………………………………………………………………………………
……………………………………………….……………………………………………………………………..………………………
There are two types of LPA, states what these are and suggest some decisions which each
could make.
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………

Advanced decisions
What is an advanced decision?
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
If an advanced decision is related to life-sustaining treatment what criteria about how this is
recorded must be fulfilled in order for it to be valid?
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………

Least restrictive option

When making a best interests decision this should always be the least restrictive option in
terms of their liberty and ability to freedom to do as they choose. This option should also
fulfil the previous principle of being in the persons best interests.
For the below examples, state which of the two choices you would consider to be the least
restrictive option but that also meets the needs of the person. State your reasoning.
Joanna has moderate Alzheimer’s type dementia, she has been admitted to hospital
following being found walking around her town in the early hours of the morning. She was
found to be malnourished and it was apparent her personal hygiene. She is known to have
been struggling at home for some time, she has been living off sandwiches and other cold
meals since she set fire to her kitchen and her cooker was disabled. She has a pendant alarm
due to her frailty and risk of falls however she forgets to wear this. On looking at her house
she has out of date food in the fridge and her medication has not been taken. She has
always valued her independence and does still go out to local shops, recently neighbours
have had to help her find her way back home, they have reported that doors and windows
were unlocked. Social services have tried to put carers in place however Joanna does not let
them into her house. Whilst she lacks capacity to decide where she lives she is quite
adamant that she does not want to leave her house.
Her choices are:
• Sheltered accommodation (self contained flat with kitchen, a warden will check on
her daily and will respond if she presses the emergency buzzer, she is free to come and go
as she chooses).
• 24 hour residential care (her own room within the home, meals prepared for her,
staff present all the time, locked door but she can be allowed out by staff – escorted if
needed).

What is the best option for Joanna – state your rationale.

54
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
Reflect on this decision bearing in mind it is her wish to stay in her own home.
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………..………………………

Simon has always been a keen walker, his dementia is progressing and his family is
concerned that he might get lost, Simon also does worry that one day he will lose his way
but wants to continue walking as it is one of his great loves, his wife has attempted to stop
him walking however he became angry and went anyway. To assess this an occupational
therapist from the mental health team went on a short walk with him, he showed good road
safety and was able to find his way using local landmarks. He always has his mobile
telephone with him. He lives with his wife who has restricted mobility, she prepares his
meals and prompts him with tablets, otherwise he is independent with his daily living
activities. On one occasion when out walking he called his son stating he was lost but was
not able to tell him where he was, his family drove around until he was eventually found 3
hours later.
His choices are:
• Move into a care home with a locked door to prevent him going out walking.
• GPS tracker which Simon wears which can be activated by family members and can
signal for help if Simon presses a button on this.

What is the best option for Simon – state your rationale.

……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………..………………………

Reflect on this decision bearing in mind our duty of care and his individual rights.
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………

Deprivation of Liberty Safeguards (DoLS)

Article 5 of the Human Rights Act states that 'everyone has the right to liberty and security
of person. No one shall be deprived of his or her liberty [unless] in accordance with a
procedure prescribed in law'. The Deprivation of Liberty Safeguards is the procedure
prescribed in law when it is necessary to restrict the liberty of a resident or patient who
lacks capacity to consent to their care and treatment in order to keep them safe from harm.
A Supreme Court judgement in March 2014 made reference to the 'acid test' to see whether
a person, who is under the responsibility of the state, is being deprived of their liberty which
consisted of two questions. State below what these two questions are:
……………………………………………………………………………………………………………………..………………………

55
……………………………………………………………………………………………………………………..………………………

The Mental Capacity Act allows restrictions and restraint to be used in a person’s support,
but only if they are in the best interests of a person who lacks capacity to make the decision
themselves. Restrictions and restraint must be proportionate to the harm the care giver is
seeking to prevent. The vast majority of the time this occurs in hospitals and care homes
however people can be deprived of their liberty in their own homes.
For the below examples, all with people who lack capacity to make decisions about their
care and residence, state if you feel that there is No restriction on their liberty / a
Restriction on their liberty (i.e. proportionate and lawful under DoLS assuming an
application made) or a Deprivation of their liberty.

Keeping someone in a care home as they will be a risk to themselves of getting lost /
vulnerable to abuse and never letting them go out. Not a restriction
Restriction
Deprivation
Keeping someone in a care home as they will be a risk to themselves of getting lost /
vulnerable to abuse and only allowing them to leave the home escorted by family or staff.
Not a restriction
Restriction
Deprivation
A patient on a general ward who needs to stay whilst they are treated for an infection and is
not asking to leave. Not a restriction
Restriction
Deprivation
An informal patient staying in a locked mental health ward whilst they are treated for
behavioural problems, they are trying to leave the ward. Not a restriction
Restriction
Deprivation
A patient who lives at home who has a comprehensive care package provided by the NHS
who is sedated so that he is unable to leave his house. Not a restriction
Restriction
Deprivation
A patient attending a hospital outpatient department for a blood test. Not a restriction
Restriction
Deprivation
An informal patient on a locked mental health ward being treated for depression, not trying
to leave. Not a restriction
Restriction
Deprivation
A resident in a care home who has been told the code for the door and is allowed to come
and go as they wish Not a restriction
Restriction
Deprivation

If a patient needs to be detained in hospital under the mental health act then this
supersedes the mental capacity act, therefore DoLS only applies to informal patients. Other

56
decisions not related to their mental health condition would still fall under the mental
capacity act i.e. capacity and consent for physical health treatment.

Safeguarding
As nurses we have a duty of care to protect our clients one way we can do this is recognising
signs of abuse. Have a look at ‘Safeguarding adults types of abuse’ on Blackboard then fill in
the below questions
There are currently 10 recognised forms of abuse, list them below and list possible
indicators for each.
Form of abuse Possible indicators

To raise a concern about abuse this should be done by raising a safeguarding alert with local
adult social care. Find out for your local area how you can contact the safeguarding team
and record this below.
……………………………………………………………………………………………………………………..………………………
………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………..………………………
You can also raise concerns about care within your own organisation often this can be
resolved by talking to your manager / person concerned, however you may have to raise
these concerns further, often referred to as whistleblowing. Please see NMC guidance
around this, available at their website: www.nmc.org.uk

End of Life
Dementia is a terminal illness. Due to this NICE guidelines for dementia (2016) state
Dementia care should incorporate a palliative care approach from the time of diagnosis until
death. The aim should be to support the quality of life of people with dementia and to
enable them to die with dignity and in the place of their choosing, while also supporting
carers during their bereavement, which may both anticipate and follow death.
End of life pathways
Dementia is often under recognised as a terminal illness, due to this people with dementia
do not access the same palliative care services as other groups such as cancer patients. It is
also thought to not be recorded as prevalent as it should be due to knowledge of the
certificating doctor (Marie Curie & Alzheimer’s Society, 2014). Dementia also prevents
people from accessing care as readily for illnesses and can prove a barrier to the treatment
for other causes of death. Often people with dementia who are approaching the end of their
lives are not recognised as such and end of life agitation is mis-identified as behavioural
problems and people can be referred to mental health services to help manage this.
Review the NICE pathway for end of life care for people with life limiting conditions
available on Blackboard ‘Caring for an adult at the end of life’
One of the first points is recognising when someone may be approaching the last days of
their life. Below states signs and symptoms you might see in someone.
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
Other aspects of the pathway are around communication, shared decision making and
providing individualised care. It can be helpful to recognise when people are approaching

57
the end of their life prior to their last days. Harris (2007) suggests specific prognostic
indicators that someone with dementia may be in the last year of their life, read the
‘Palliative care for people with dementia’ article and state what these are:
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
Referring to the NICE end of life pathway what ways can we help manage people’s
symptoms when they are approaching the end of their life?
…………………………………………………………………………………………………..………………………………………..
……………………………………………………………………………………………………..……………………………………..
……………………………………………………………………………………………………..……………………………………..
The aim of managing these symptoms is not around keeping someone alive longer but
rather to make them comfortable and achieve a good death. Look up other things which
may be important to people to achieve a good death.
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
Depending on your specialism you may not be familiar with providing palliative care. For
your local area find out what local teams are available to refer onto for advice and support
for your patient.
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………

Decisions around end of life

When planning people’s end of life care, it is important that we respect their wishes as
much as possible. Hopefully people will have made advanced decisions / statements about
how they would want to die, if so these must be respected.
When this is not the case we would be making decisions as a team including family
members if at all possible. Different cultures would have different approaches to death and
dying.
From your own research, for 3 different religious groups state common practices which they
may wish to be observed.
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
Whilst we do have to be aware of people’s cultural and religious beliefs around death, their
individual preferences may vary. We, therefore, must not assume that people want care in a
particular way based on their religion or culture, but it can help us to ask pertinent
questions. What factors might you want to want to discuss with the person (or their family if
the person is unable)
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………

Do Not Attempt Resuscitation (DNAR)

58
If we are planning someone’s death this should include a decision around whether to try to
resuscitate them or not. Previously this was done using separate forms for different care
settings. Now most areas have unified forms, please see next page for an example – these
must be printed on lilac paper and should be kept at the front of people’s notes.

Pain
Pain management is a problematic issue in people with dementia at many points
throughout their illness. Pain management at the end of their life is vital to ensure someone
is able to achieve a good death. The main issue in pain management is that people are not
as able to communicate their pain effectively. Suggest ways which this could be overcome.
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………
……………………………………………………………………………………………………………………..………………………

Younger people with dementia

Not everyone with dementia is and older person, Dementia is ‘young onset’ when it affects
people of working age, usually between 30 and 65 years old. It is also referred to as ‘early
onset’ or ‘working-age’ dementia. What specific issues might someone with working age
dementia have around thinking about the end of their life.
…………………………………………………………………………………………………………………..…………………………
…………………………………………………………………………………………………………………..…………………………
…………………………………………………………………………………………………………………..…………………………

Families
The death of a loved one is always a difficult time for people and we must ensure that
people are adequately supported after the death of the person with dementia. Often
families, particularly people who have been main/sole carer, experience conflicted emotions
after the death of their loved one with dementia. Think of/ find reasons why they may feel
conflicted.
…………………………………………………………………………………………………………………..…………………………
…………………………………………………………………………………………………………………..…………………………
…………………………………………………………………………………………………………………..…………………………
Suggest ways you can help families who are recently bereaved:
…………………………………………………………………………………………………………………..…………………………
…………………………………………………………………………………………………………………..…………………………
…………………………………………………………………………………………………………………..…………………………

References
Marie Curie & Alzheimer’s Society (2014) Living and dying with dementia in England:
Barriers to care
https://www.mariecurie.org.uk/globalassets/media/documents/policy/policy-
publications/december-2014/dementia-report.pdf

NICE (2016) Dementia: supporting people with dementia and their carers in health and
social care https://www.nice.org.uk/guidance/CG42

59
NICE (2015) guidelines for end of life care for people with life limiting conditions
https://pathways.nice.org.uk/pathways/end-of-life-care-for-people-with-life-limiting-
conditions

Harris, D (2007) ‘Forget me not: palliative care for people with dementia’. Postgraduate
Medical Journal. 83:362-366. http://dx.doi.org/10.1136/pgmj.2006.052936

Research and evidence based practice

There is currently an elevated focus on dementia research since the Prime ministers
challenge on dementia (Department of Health, 2012). There is a national network for
dementia research DenDRoN run through the national institute for health research. Go to
their website and find three studies which are being run currently.
http://www.nihr.ac.uk/nihr-in-your-area/dementias-and-neurodegeneration/
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
……………………………………………..………………………………………………………………………………………………
Describe how you could help people with dementia become involved in research. The above
website may be helpful.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
……………………………………………..………………………………………………………………………………………………
Whilst conducting research is difficult and at times problematic, state some particular issues
can affect people with dementia’s participation in research? (you may want to think back to
the legal section for some ideas)
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Research is one way which we can examine and enhance nursing practice, you will likely also
come across Service Evaluations and Clinical Audits. For each of the below give a definition
in your own words highlighting how each is different from others.
Research
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
…………….…………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Service Evaluation
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Clinical Audit
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

60
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

Reference
Department and Health (2012) Prime Minister's challenge on dementia.
https://www.gov.uk/government/publications/prime-ministers-challenge-on-dementia

Learning Summary – Level 3

How do acetylcholinesterase-inhibitors work?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………..……………………………………………………………………………………………………………………
…………………………………………………………………………………………………………………………………………….

Give three common side effects of acetylcholinesterase-inhibitors.

………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………................

Why are anti-psychotic medications avoided in people with dementia?

………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

What is meant by the term capacity and how does it relate to decision making?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………………………………….
What is an advanced decision?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………………………………….
Give three types of abuse adults may suffer and what indicators might there be for them.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
Give three ways we can support people who are at the end of their lives.
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
How can you support people with dementia to become involved in research?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………

61
………………………………………………………………………………………………………………………………………………
……………………………………..……………………………………………………………………………………………………….
What do you intend to find out more about to help you understand people with dementia
better?
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
………………………………………………………………………………………………………………………………………………
……………………………….………………………………………………………………………………………………………………
…………………………………………………………………………………………………………………………………………….

Background
Maternity care has changed considerably over the years, and research demonstrates that a
natural approach to child birth and pregnancy results in more favourable outcomes for both
the mother and child (Royal College of Midwives [RCM], 2016). However, despite the call for
more natural approach to maternity care, epidemiological statistics highlight an increase in
the prevalence of pregnant women with associated co-morbidities, such as, the rise in
number of pregnant mothers with diabetes. In response, more complex and
multidisciplinary care packages are required and as a consequence, nurses from all
specialities need to ensure they have the knowledge to treat pregnant and postnatal
women (NHS England, 2016).
The Standards for competence for registered nurses highlight the requirement for all nurses
“to be able to recognise and respond to the needs of all people who come into their care,
including babies, pregnant and postnatal women” (Nursing and Midwifery Council, [NMC],
2014). Alongside this requirement, the European Union Standards for Nursing and
Midwifery also advised that training programmes for adult, child and mental health pre-
registration nurses should include some basic principles of maternity care (World Health

62
Organisation [WHO], 2009). Therefore, the satisfactory completion of this Maternity Care
Workbook not only allows nursing students to develop a basic understanding of the United
Kingdom (UK) Maternity Care Services but also meet with the requirements of regulatory
bodies for nursing and continuing professional development.
On completion of this workbook you will be able to:
Identify and recognise the need for health promotion and education pre and post
conception.

Review the factors that promote or are detrimental to pregnancy, health and
wellbeing in society

Have an awareness of and appraise strategies for health promotion in current

maternity care practice

Demonstrate an insight into the physical and mental health issues that pregnant
women may experience
In order to improve maternity outcomes and reduce maternal and infant inequalities, as
well as ensure the best start in life, Public Health England ([PHE],2015) advocate that those
involved in the delivery of care in the pre and postnatal period require the skills and
knowledge to empower mothers to make healthier choices that will subsequently, impact
on overall family health and well-being.
Therefore, this section will examine
Social and environmental factors that influence health and health choices in relation
to pregnancy and child birth

Identify those who are best placed to deliver health promotion and education during
pregnancy

Explore available preventative strategies and services

Social determinants are the factors that influence our health and well-being and can
determine the choice we make in relation to our health. Whist not all social determinants
are modifiable, such as our age, those relating to our lifestyle are.

Each woman's experience of childbirth is unique and different, however, it is often

determined by the culture with which that woman identifies and the culture in which she
gives birth. Identify the ways in which culture plays a major role in the way a woman
perceives and prepares for her pregnancy in relation to the following topics: Diet and

Nutrition, Pain in Childbirth and Postpartum Care. Ensure that you use references to support
your findings.
Diet and Nutrition

Pain in Childbirth

63
Postpartum Care.

What does literature say that the dangers to early foetal life are when alcohol, smoking and
drugs are part of a person’s lifestyle?
Alcohol

Smoking

Drugs (both prescribed and social)

Choose one of the following and demonstrate your knowledge and understanding of what
evidence says in regard to how your chosen topic influences pregnancy and the choices a
woman makes during or following her pregnancy. The topics to choose from are -
educational attainment, occupation, age. You should include at least 2 academic references
to support this discussion.

Whilst maternity service in the UK are primarily Midwife-led, often a multidisciplinary

approach to care is required. Identify the role of the following practitioners in the care of
the woman during pregnancy and of the mother and child in the postnatal period.
Midwife
Reference source:

Health Visitor
Reference source:
Physiotherapist
Reference source:

PHE’s (2016) strategic plan sets out reforms to improve the health of the nation and close
the inequality gap. For maternity services this is focussed on improving maternal health and
giving children the best start in life. These strategies are not just solely aimed at improving
the health of the woman during pregnancy but also improving health and well-being prior to
conception and beyond. This can be focussed upon a specific area/topic such as, physical
activity. Strategies are considered a means of improving health and can be in the form of a
health directive/paper, local policy or an actual service.

Give examples each of the following types of strategy and explain its role in improving
health

Government directive, framework or paper - 2 examples required

64
Preventative Strategy – this can be local or national and should be an actual service rather
than a publication, for example, Change 4 Life.

The body experiences a multitude of changes pre and post-pregnancy, it is not surprising
that for some, this can lead to challenges regarding their overall health and well-being.
Mental and physical health problems experienced during pregnancy are documented to
have long-term consequences for both mother and baby, and also impact significantly, on
the NHS budget and resources (PHE, 2017).
This section will examine
The potential physical complications relating to pregnancy and child birth

Discuss maternal mental health and well-being

Sexual health and pregnancy

The Centre for Disease Control and Prevention (2017) defines physical health complications
of pregnancy as a condition that occurs as a result of pregnancy or a pre-existing condition
that can be exacerbated as a result of pregnancy and has the potential to lead to
complications for the mother and child.

Give a brief overview of 3 physical health conditions that may arise as a result of pregnancy
or lead to complications during or after birth. See example given
Physical Condition Briefly discuss the reasons for your choice supported by evidence
Symphysis Pubis Dysfunction (SPD)
SPD is described as pregnancy associated instability and dysfunction of the
symphysis pubis joint and/or sacro-iliac joint. A more contemporary term for this condition
is Pelvic Girdle Pain (PGP).

The underlying cause of PGP is believed to be a combination of factors that include: the
pelvic girdle joints moving asymmetrically, abnormal pelvic girdle biomechanics from altered
activity in the spinal abdominal, pelvic girdle, hip and/or pelvic floor muscles. There are
several factors that increase the risk of PGP such as, heavy workload, multiparty and high
body mass index.

Treatment can vary depending on the degree of PGP and the symptoms experience,
however, in most cases physiotherapy and pain relief are the most common form of
treatment.
(Pelvic, Obstetric and Gynaecological Physiotherapy, 2015)

Choose one of the above conditions and discuss the potential impact on quality of life

65
PHE (2017) cite mental health as ‘one of the strongest predicators of wellbeing in the early
years’. Adding, that up to 20% of women experience a mental health problem during
pregnancy or within a year of giving birth. The impact of mental health extends beyond the
mother and is noted to have both physical, emotional and behavioural consequence for the
child. For example, perinatal mental illness is associated with an increased risk of
prematurity and low birth weight, irritability and sleep problems in infancy. Within PHE’s
report suicide is noted to be the leading cause of death for women during pregnancy and in
the year after giving birth. Perinatal depression, anxiety and psychosis cost society
approximately, 8.1 billion for each one-year cohort of births in the United Kingdom.

Depression and anxiety are the most common mental health problems during pregnancy,
with around 12% of women experiencing depression and 13% experiencing anxiety at some
point; many women will experience both.

Depression and anxiety also affect 15 20% of women in the first year after childbirth
(National Institute of Clinical Excellence, 2017). In 2014, the Royal College of Midwives
published a report that highlighted, 3rd year Student Midwives did not have the knowledge
to recognise post-natal depression and felt inadequately prepared for this aspect of
maternity care.

List below signs/symptoms of Post-natal depression

Reference Source:

MIND is an organisation that provides advice and support to empower anyone experiencing
a mental health problem. Please use the following link and explore the resource available
regarding postnatal mental health, please ensure you watch the video entitled - Talking
about postnatal mental health and read some of the blogs available
https://mind.org.uk/information-support/types-of-mental-health-problems/postnatal-
depression-and-perinatal-mental-health/#.WblDDKhSzD6

Why is there still stigma attached to postnatal depression?

Reference Source:

How can a mental health and its treatment affect the woman, the foetus and baby?

Reference Source:

List below as many health professionals as you can that have a remit in maternal mental
health and discuss the service they provide
Reference Source:

66
Voluntary and charitable organisations are also useful providers of support for those
suffering from mental health issues – please give at least two examples below and discuss
the service they offer

Good sexual health is an important aspect of improving outcomes and closely linked to good
overall health. Changes to the delivery and accessibility of sexual and contraceptive service
has positively impacted on rates of teenage pregnancies. However, despite the reduction in
pregnancies, the UK continues to have one of the highest rates of teenage pregnancy in
Western Europe, alongside, unplanned pregnancies leading to abortions and an increasing
prevalence of Chlamydia and Gonorrhoea (FPA, 2017, Royal College of General Practitioners,
2016)

Many factors influence relationships and safe sex, using evidence discuss how the following
facotrs influences sexual health
Peer Pressure

Self-esteem

List below 5 providers of contraceptive services or advice.

The risks associated with teenage pregnancy are well documented within health literature –
see example below. Identify and explain at least 2 further potential risks associated with
teenage pregnancy.

Mental Health - The Department of Health (2013) discusses the increase mental issues
teenagers’ experiences as a result of pregnancy, reporting a threefold increase in the rate of
postnatal depression amongst this age group in comparison to others. There is also a higher
risk of poor mental health for three years after the birth.

According to The World Health Organisation ([WHO], 2017) “Breastfeeding is the normal
way of providing young infants with the nutrients they need for healthy growth and
development. Virtually all mothers can breastfeed, provided they have accurate
information, and the support of their family, the health care system and society at large”.

Despite the benefits of breast feeding and improvements in the figures for those that
initiating breastfeeding, the figures for sustained breastfeeding and breastfeeding amongst
women in the lower-socio economic groups remains poor.

The final section will discuss

67
 The benefits of breastfeeding to both the mother and child

Breastfeeding support

How can we as a health service promote breastfeeding and encourage mothers to

breastfeed their children?

Discuss and analyse the benefits of breastfeeding and include evidence. You should note the
benefits for both mother and child where relevant. An example has been given below.
Skin to Skin
It has been found that skin-to-skin contact supports the establishment and maintenance of
breastfeeding. There is also some evidence to suggest a positive impact on the stability of
the cardio-respiratory system in infants who received skin-to-skin (Lau, 2017)

What are the most common reasons for women not to wanting to breastfeed?

There are several breastfeeding networks and organisations available to support women
and their families. Please visit the websites for the organisations listed below and following
answer the question – what support does each service offer in terms of supporting woman
to breastfeed.
Breastfeeding Network (BFN)

La Leche League GB

What is your local breast feeding network called?

68