Dementia elearning workbook

This elearning workbook provides information and resources to assist in caring for people with dementia in various settings. It covers topics such as understanding dementia, communication skills, and ethical dilemmas. The workbook is designed to meet the common core principles for supporting people with dementia. BSc Healthcare October 2019

Pre-registration Adult Nursing:
Dementia elearning workbook
BSc Healthcare October 2019
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Contents
Contents................................................................................................................................................2
Introduction...........................................................................................................................................3
References.............................................................................................................................................4
Useful resources....................................................................................................................................4
Textbooks..........................................................................................................................................4
Websites............................................................................................................................................5
Reports..............................................................................................................................................5
Learning outcomes................................................................................................................................7
Theme one: What is dementia?.........................................................................................................7
Theme two: Developing your existing communication and care skills to enable you to care for
people with dementia in hospital settings.........................................................................................8
Theme three: Understanding and respecting people with dementia................................................9
Theme four: Dementia, delirium and depression – responding to distress caused by these
underlying conditions........................................................................................................................9
Theme five: Understanding legislation, policies and national guidelines........................................11
Theme six: Integrated care and multi-agency working....................................................................13
Theme seven: Ethical dilemmas and advocacy................................................................................14
Theme eight: End of life care...........................................................................................................18
Theme nine: Evaluation of care and service improvement..............................................................21

Introduction
Caring for people with dementia and their families is central to adult nursing and this
dementia care workbook is designed to assist you to care for people with dementia skilfully,
compassionately and knowledgeably, in a variety of settings. Worldwide there are growing
numbers of people with dementia and these figures are predicted to rise considerably, due to
an increase in the number of people living longer. It is estimated that there were 46.8 million
people living with dementia in 2015 and this number will reach 131.5 million in 2050
(Alzheimer ’s disease International 2016).
There are 850 000 people with dementia in the UK, the numbers set to rise to over 1 million
by 2025. This will soar to 2 million by 2051. 225 000 will develop dementia this year in
2017, that’s one person every three minutes. 1 in 6 people over the age of 80 have
dementia. 70 per cent of people in care homes have dementia or severe memory problems.
There are 40 000 people under 65 with dementia in the UK. More than 25 000 people from
Black, Asian and Minority Ethnic Groups in the UK are affected. (Alzheimer’s Society,
2017).
One in four people in acute hospital settings have dementia (Alzheimer’s Society 2009); they
may be in hospital for a range of clinical reasons, e.g. infections, falls or strokes. In addition,
at least two-thirds of people in care homes have dementia (DH 2013) and many other people
with dementia live at home, supported by community health and social care teams.
This workbook complements your university-based teaching by supporting you in learning
about dementia care during practice learning, using reflective activities. The workbook also
directs you to a range of online and other learning resources to support your learning. The
workbook has been designed to ensure that you meet Skills for Health and Skills for Care
(2015) Common core principles for supporting people with dementia.
Instructions for use
 First, familiarise yourself with the workbook and its contents.
 Keep the workbook electronically, writing notes into the boxes provided for each
activity, which will expand as required. You can update the page numbering system
within your word document as you wish by going to ‘References’ and then click on
‘Update table’). Make sure that you keep a back-up copy.
 There are sections of the work book that are closely related to the dementia care that
you may hear about, observe or participate in whilst you are out on clinical
placement. Make sure that you refer to the learning objectives in your dementia care
work when you set your practice learning objectives with your placement mentor.
Remember that any work you produce in relation to practice-based activities must be
anonymised to ensure confidentiality of patients, families, staff and organisations.
Dementia care is a developing field and you may find additional resources which you can
use to support you in completing this workbook. If you do add a new resource to your
Dementia Care Work Book, make sure that you reference it using the University of
Bedfordshire’s Harvard Referencing System.

References
Alzheimer’s Disease International (2016) World Alzheimer Report 2016: the global economic
impact of dementia. London: Alzheimer’s Disease International.
Alzheimer’s Society (2009). Counting the cost: caring for people with dementia on acute
hospital wards. London: Alzheimer’s Society.
Alzheimer’s Society (2017) Dementia Facts for the Media. Available at:
https://www.alzheimers.org.uk/info/20027/news_and_media/541/facts_for_the_media.
Accessed: 13th March 2017.
Department of Health (2009) Living Well with Dementia – A National Dementia Strategy.
Gateway reference 11198. London: DH.
Department of Health (2010) Quality outcomes for people with dementia: building on the
work of national dementia strategy. Leeds: DH.
Department of Health (2013) Dementia care and support. London:DH
Skills for Health and Skills for Care (2015) Common core principles for supporting people
with dementia: a guide to training the social care and health workforce. Leeds: Skills for
care.
Useful resources
Resources to support and promote excellence in dementia care are growing rapidly. The
resources listed here are not a definitive list and you may find others to help you.
Textbooks
Andrews, J (2015) Dementia – The One Stop Guide: Practical advice for families,
professionals and people living with dementia and Alzheimer’s Disease. London: Profile
Books.
Brooker, D. (2007) Person centred dementia care : making services better. London : Jessica
Kingsley
Downs, M.; Bowers, B. (Eds) (2008) Excellence in dementia care: research into practice.
Maidenhead : Open University Press
Heath, H. (2010) Improving quality of care for people with dementia in general hospitals.
London Royal College of Nursing
Lipton, A.M. & Marshall, C. D. (2013) The Common Sense Guide to Dementia For Clinicians
and Caregivers. New York: Springer Verlag. (Available as an e-book from the University of
Bedfordshire Learning Resources Centre.)

Mace, N. L. & Rabins, P. V. (2011) The 36-Hour Day – A family Guide to Caring for People
Who Have Alzheimer’s Disease, Related Dementias, and Memory Loss. 5th Edition. New
York: Grand Central Life & Style.
May, H.; Edwards, P.; Brooker, D. (2009) Enriched care planning for people with dementia
[electronic resource] : a good practice guide for delivering person-centred dementia care.
London: Jessica Kingsley
Moniz-Cook, E.; Manthorpe, J. (Eds) (2008) Psychosocial interventions in early dementia :
evidence-based practice. London : Jessica Kingsley
Morris, G; Morris, J. (2010) The dementia care workbook [electronic resource] Maidenhead :
McGraw-Hill Open University Press
Steele, C. (2010) Dementia care [electronic resource] New York/ London: McGraw-Hill
Medical
Stokes, G. (2010) And still the music plays: stories of people with dementia. London :
Hawker Publications Ltd
Websites
Alzheimer’s Society: http://www.alzheimers.org.uk/
Dementia Carers UK: https://www.carersuk.org/forum/specific-disabilities-and-conditions/
dementia
Social Care Institute for Excellence - Dementia: http://www.scie.org.uk/dementia/
UK Wandering Network Web link: http://wanderingnetwork.co.uk/Welcome.htm
My Home Life: http://myhomelife.org.uk/
Reports
Alzheimer’s Disease International (2016) World Alzheimer Report 2016: the global economic
impact of dementia. London: Alzheimer’s Disease International.
Alzheimer’s Society 2009. Counting the cost: caring for people with dementia on acute
hospital wards. London: Alzheimer’s Society.
Department of Health (2009) Living Well with Dementia – A National Dementia Strategy.
Gateway reference 11198. London: DH.
Department of Health (2010) Quality outcomes for people with dementia: building on the
work of national dementia strategy. Leeds: DH.
Department of Health (2015) Prime Minister’s Challenge on Dementia 2020. London: DH.
Available at: https://www.gov.uk/government/publications/prime-ministers-challenge-
on-dementia-2020 Accessed: 13th March 2017

Department of Health (2016) Health matters: midlife approaches to reduce dementia risk.
London: DH. Available at: https://www.gov.uk/government/publications/health-matters-
midlife-approaches-to-reduce-dementia-risk/health-matters-midlife-approaches-to-reduce-
dementia-risk. Accessed: 13th March 2017
National Institute of Health and Clinical Excellence (2006) Dementia: Supporting people with
dementia and their carers in health and social care. Clinical Guideline 42. Amended 2011.
London: NICE.
Nuffield Council on Bioethics (2009) Dementia: Ethical Issues. London: Nuffield Council on
Bioethics.
Royal College of Psychiatrists (2011). Report of the National Audit of Dementia Care in
General Hospitals. Editors: Young J, Hood C, Woolley R, Gandesha A and Souza R.
London: Healthcare Quality Improvement Partnership.

Learning outcomes
By completing this workbook you will have met Learning Outcomes 2& 3 for NAD008-3: Integrated
Nursing Care for Adults with Complex needs.
2 Analyse the physical and psychosocial requirements of adults with complex health needs and
the challenges of addressing these
3
Competently and independently assess, plan, implement and evaluate the care of people with
complex health needs that may include learning disability, dementia or mental health issues,
and identify where health promotion can assist in the recovery of these adults
Theme one: What is dementia?
Activity 1
The dementia is defined as a syndrome in which deterioration of thinking and ability to do an
activity decreases. It affects older age of people by causing the damage within the brain of
people. This problem mainly occur when cells of brain does not communicate which leads to
affect the behaviour, thinking (Prince, 2013) .
Activity 2
Use the following resources to further investigate the nature of dementia and how it affects
people:
 BBC News Dementia: A family’s story at
http://news.bbc.co.uk/1/hi/health/8491946.stm
 Social Care Institute for Excellence: Dementia at
http://www.scie.org.uk/publications/dementia/index.asp *
*In particular, the section ‘About dementia’ will explain the different types of dementia
and also highlights that dementia can occur in adults at younger ages, not only in older
people.
 Alzheimer’s Society at http://www.alzheimers.org.uk/
 Young Dementia UK at https://www.youngdementiauk.org/
I have learnt from these resources is that the advance stage cause highly effect on the
people as they lost to communicate about their wishes. But the proper care is provided by
health care (Jung, 2015).

Theme two: Developing your existing communication and care skills to
enable you to care for people with dementia in hospital settings.
Activity 1
You can care for a person with dementia more effectively if you understand them as an
individual with their own likes/dislikes, personality and history. The Alzheimer’s Society has
developed a leaflet entitled ‘This is me’, “a simple and practical tool that someone going into
hospital can give to staff to help them understand the condition” (Alzheimer’s Society – see
link below).
Link to the ‘This is me’ leaflet from Alzheimer’s Society:
http://alzheimers.org.uk/thisisme
Look at the leaflet and consider what things you would include if you were filling this in for
yourself: how might this help staff care for you as an individual if you were unable to
communicate your own needs? Write these in the box below.
The things that I will consider in these are such as background of my family and culture. In
addition to this, my routine, daily activities and preferences (Brooker and Latham, 2015) .
Additional Activity: If you see ‘This is me’ being used with a patient while you are on
placement, reflect on what you thought you knew about this person and compare this with
what additional information you find in their ‘This is me’ document.
Activity 2
The Alzheimer’s Society has produced some ‘top tips’ “designed to help nurses and other
hospital staff in their delivery of good person-centred dementia care”. Go to the link below
and use these ‘top tips’ to explore ways of improving your communication skills when caring
for people with dementia.
Link to the ‘Top tips for communication and language’ from Alzheimer’s Society:
https://www.alzheimers.org.uk/info/20064/symptoms/90/communicating_and_language
For information about caring for the person with dementia who is experiencing pain, look at
this SCIE resource:
http://www.scie.org.uk/dementia/advanced-dementia-and-end-of-life-care/end-of-life-care/
pain.asp
For information about how effective pain management can influence challenging behaviour,
look at this BBC News item:
http://www.bbc.co.uk/news/health-14138884
Write notes about the key aspects you have learned from these resources in the box
below.
The drugs that are used to dementia is painkillers and antipsychotic drugs. As there are
different causes of pain occur within dementia (Lourida, 2013).

Theme three: Understanding and respecting people with dementia
Activity 1
Thinking about a person with dementia who you have met or cared for, consider what would
help the person to feel understood and respected. To assist you may wish to have a look at
the link below and then write down some key points:
Alzheimer’s Society: http://www.alzheimers.org.uk/site/scripts/documents_info.php?
documentID=84
The understanding about environment in which the person has develop, relationship of
person and the support from friends and family help the person to feel respected (Prins and
Scheltens, 2015) .
Activity 2
An important aspect of promoting dignity in care is involvement in decision-making. This can
be challenging in the care of someone with dementia, particularly where communication is
difficult.
Identify the key issues that nurses and others should take into consideration and note these
in the box provided. To assist you may wish to have a look at the link below:
Social Care Institute for Excellence [SCIE]: http://www.scie.org.uk/dementia/supporting-
people-with-dementia/decisions/
The nurses should consider the mental capacity assessment of patients so that they can take
appropriately decision for patients (Cotelli, Manenti and Zanetti, 2012).
Theme four: Dementia, delirium and depression – responding to distress
caused by these underlying conditions
Sometimes the behaviour associated with depression, delirium or dementia can appear
similar in older people.
Activity 1
Access the website below:
https://vimeo.com/37367664
Watch the video entitled: ‘Experiences of dementia, delirium and depression’ which
explores these experiences for residents at a care home. Write some reflective notes below.

While treating older patients it is necessary to consider their choices which help them in their
disease (Bennett and Thomas, 2014).
Activity 2
Access and read the following resources. The journal articles are available as electronic full
text via Learning Resources:
Arnold, E. (2005) Sorting out the 3 D’s: Delirium, dementia, depression Holistic Nursing
Practice 19[3]: 99-104
Pountney, D. (2007) Dementia, delirium or depression? Nursing Older People 19[5]: 12-14
Australian Government Initiative: Dementia Education Online
http://dementia.uow.edu.au/understandingdementiacare/module2/dementia.html
Registered Nurse Association of Toronto: Delirium, Dementia, and Depression in Older
Adults: Assessment and Care
https://rnao.ca/sites/rnao-ca/files/bpg/
RNAO_Delirium_Dementia_Depression_Older_Adults_Assessment_and_Care.pdf
1. What are the differences and similarities between dementia, delirium and depression?
List these in the box below.
The delirium is define as the symptoms that develop suddenly fluctuate in a day. The
depression occurs as change in mood as negative thoughts that remain for weeks. The
dementia is occur as slow process of decline in cognitive thoughts (Pagonabarraga and
Kulisevsky, 2012).
2. Why is it important for a nurse to understand these differences so that they can more
effectively care for the person? Write notes in the box below.
It is important to consider these so that they can provide appropriate care and services to
dementia patients (Stokes, 2017).
Activity 3
Choose an older person for whom you are currently caring and who exhibits some of the
features that you explored in activities 1 and 2. The person may have been diagnosed as
having dementia, delirium and/or depression.
1. How has the diagnosis been made? For example, have assessment tools been used?

The diagnosis must be made with the help of screening and assessment tools such as 3D
CAM, etc (Hsieh, 2013).
2. Reflect on your interactions with this individual. Which of your actions has helped the
person? Which have seemed less beneficial?
The analysing of surrounding environment action is less beneficial within the interaction with
individual (Alladi, 2013).
Theme five: Understanding legislation, policies and national guidelines
Understanding the way in which national policies are applied to local strategies for dementia
care is an important aspect of caring for people with dementia. The Registered Nurse needs
to be aware of the political, social and economic issues that affect the availability,
organisation and quality of local services for people with dementia, and their informal carers.
A range of sources address the policy aspects of dementia care and some are given here.
Activity 1
To assist your understanding of policy, here are links to webpages that discuss dementia
care policy and its application in practice:
Link for the Alzheimer’s Society’s webpage on policy, including the Society’s responses to
national guidelines, strategies and policies, and position statements on a range of issues
such as anti-psychotic medication and the Mental Capacity Act [2005]:
http://alzheimers.org.uk/site/scripts/documents.php?categoryID=200128
Link for the Department of Health’s webpage on National Strategies and Standards for
Dementia Care:
https://www.gov.uk/government/policies/dementia
Professor Alistair Burns, National Clinical Director for Dementia has a blog about the latest
developments in dementia care:
https://www.england.nhs.uk/blog/alistair-burns-9/
Lorraine Jackson - Deputy Director - Dementia Policy, Department of Health
'Keynote Address on 8th June 2016 - Prime Minister’s Challenge on Dementia 2020 –
Implementation':
https://www.youtube.com/watch?v=_lu6hd77sh4
Activity 2
1. Select one source from each of the two sub-headings below:
Government policy and related documents
Accessible summary of the Department of Health’s National Dementia Strategy, available at:

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/168221/
dh_094052.pdf
The quick reference NICE clinical guideline on supporting people with dementia and their
carers [2018], available at:
https://www.nice.org.uk/guidance/ng97
The NICE Dementia quality standard, available at:
https://www.nice.org.uk/guidance/qs1
Audits and reports on national standards of dementia care
Summary of the National Audit of Dementia care in hospitals report [2010], available at:
http://www.rcpsych.ac.uk/quality/nationalclinicalaudits/dementia/
nationalauditofdementia.aspx
The National Audit Office’s [NAO] interim report on improving dementia services in England
and other related documents [2010 publications], available at:
http://www.nao.org.uk/report/improving-dementia-services-in-england-an-interim-report/
2. Focus on the two selected sources and identify the key points in each document.
The national audit of dementia monitors the care that is provided to people with dementia.
The nice provides quality of standards to organisation so that they can provide proper care
to people (Burrell, 2016).
Now answer these questions in relation to the two selected documents:
3. According to the documents you have looked at, what are the major concerns/priorities
for the care of people with dementia, now and in the next 10-20 years?
The major priorities of both is to provide proper care and service by regular monitoring to
people with dementia (Kessing, 2012).
4. What current national policies/strategies are in place to address these
concerns/priorities? Give a brief overview of each.
The data protection act is the current policies that help in addressing the priorities (Qiu,
2013).

5. In what ways have these national policies/strategies been translated into local action, i.e.
at the local NHS Trust level? To answer this question you will probably need to:
a. access the local NHS Trust’s dementia care policy[ies], e.g. on the Trust’s
intranet;
b. approach those members of staff who possess relevant expertise, e.g. the lead
nurse for older people in the acute hospital.
The NHS also follows data protection act policies to staff members including nurses (Exalto,
2012).
6. In your view will these national policies/strategies and their local counterparts improve
the care provided for people with dementia, and their informal carers, both in the acute
hospital setting and in the community? Give your rationale for your answer.
This policy helps in improving the care and services that are provided to people with
dementia (Jessen, 2014).
Theme six: Integrated care and multi-agency working
Activity 1
For general background information, access and make notes from the SCIE resource that
discusses the importance of joint working across health and social care in order to support
people with dementia and their carers:
SCIE: http://www.scie.org.uk/publications/misc/dementia/index.asp
Key notes:-
1. The patients do not exclude any services.
2. The managers should ensure about rights of patients so that they can provide
appropriate care and services to them (Gallacher, 2012).
Activity 2
Consider a person with dementia who you have recently cared for:
1. Which professional groups/agencies were involved with this person’s care? What did
each profession contribute to the overall care package?
The GPs, care staff, nurses, psychiatrists, social workers, geriatricians and care home
managers are contribute with in this (Mioshi, 2013).

2. How did the different professionals/agencies communicate within the team and with the
person with dementia and their family? What methods of recording information were
used and how were these accessed by all concerned?
The professionals use verbal communication with person who are having dementia and his
family (Jones and Miesen, 2013).
3. Can you identify any additional professional group/agency, not involved with this
person’s care, who might have made a useful contribution? Why do you think they were
not involved?
The managers of health and social care are not involved with in this (Todd, 2013).
Activity 3
Consider the assessment and planning of care for people with dementia from a multi-agency
perspective. To do this, access the Healthtalkonline.org resource below, which includes a
selection of video and audio clips that give families’ perspectives on multi-agency working:
http://www.healthtalkonline.org/carers/Carers_of_people_with_dementia/Topic/2118/
Make notes on the following:
1. Were there any common themes that carers identified?
2. What worked well for the person with dementia and their family, and why?
3. What did not work so well and why?
Theme seven: Ethical dilemmas and advocacy
Activity 1

Reflect on people with dementia who you have cared for in different settings. Write notes on
each of the following:
1. What ethical dilemmas have you encountered? List these down below.
Be reasonable, not emotional and choosing the greater good are ethical dilemmas that are
encountered (Biessels, 2014).
2. Which dilemma have you found most difficult to respond to? Why was it difficult?
The most difficult is be reasonable as while treating patients the staff can get emotional
within the case of dementia patients (Miesen, 2016).
3. How did you and/or others respond to this situation?
The other and I respond on this situation by properly focusing on the acre and services to
people with dementia (Zhang, 2012).
4. How comfortable did you feel about how you or others dealt with the dilemma?
The way I and other deal with dilemma provides comfortable among services users from
which appropriate services can be provided to them (Williams and Spencer, 2012).
Activity 2
Ethical issues in the care of people with dementia are increasingly recognised. In this
activity, you will broaden your awareness of the range of ethical issues. In 2009, the Nuffield
Council on Bioethics produced the report: Dementia: Ethical Issues. Access this
comprehensive report via the link below and read through the Executive Summary,
particularly focusing on paragraphs 5-16.
http://nuffieldbioethics.org/wp-content/uploads/2014/07/Dementia-report-Oct-09.pdf
For further reading, we recommend that you read Chapters 2 and 3 of this report which
include many illuminative case studies as well as explorations of the issues.
Activity 4

1. You may be aware that there are concerns that anti-psychotic medication has been used
too readily and often inappropriately with people with dementia. Access and read these
two news reports to gain awareness of the issue:
http://news.bbc.co.uk/1/hi/8356423.stm
http://www.bbc.co.uk/news/health-13698487
2. There are recommendations to substantially reduce the use of anti-psychotic medication
with people with dementia. The Dementia Action Alliance is campaigning on this issue, in
partnership with the NHS Institute for Innovation and Improvement. Access the site
below and watch the video which presents the call for action:
http://www.dementiaaction.org.uk/joint_work/the_right_prescription_call_to_action
Summarise below why this ‘call to action’ has been launched.
The drugs are inappropriate prescribing to patients which develop various consequences
with in their health and other symptoms (Freud, 2014).
3. Access the following resources to explore in more detail why anti-psychotic medication
for people with dementia should be reduced:
Alzheimer’s Society: Anti-psychotic drugs:
http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=548
Department of Health (2009) Report on the prescribing of anti-psychotic drugs to people with
dementia
http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/
prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_108302.pdf
4. Have you seen anti-psychotic medication used with people with dementia? If so do you
know why it was being used and what impact did it have on the person? In the light of
the reading you have done in a),b) and c), what do you now feel about the use of anti-
psychotic medication for this person? Write notes below.
a) Pimavanserin drug is used to treat people who are having dementia.
b) This drug is used to treat Alzheimer in patients.
c) It is also used in depressive disorder (McDermott, 2013).
Activity 5
Read through the information from Alzheimer’s Society about the Mental Capacity Act
(MCA):

http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=354
Now focus on one person you have cared for who has dementia.
1. How did you and others assess the person’s ability to make decisions?
With the help of mental capacity act helps in assessing the person ability to make decision (Swinton,
2017).
2. Consider the person’s capacity to make decisions for themselves in relation to the
Mental Capacity Act. Could the person:
 understand information given to them?
 retain that information long enough to be able to make a decision?
 weigh up the information available to make a decision?
 communicate their decision by any possible means?
Summarise your responses below.
This act helps in improving the decisions that are related to health and social care
organisation (Rohrer, 2015).
3. Look at the five principles of the MCA (cited on the Alzheimer’s Society website).
Consider each of these principles in relation to the person with dementia you have
focused on in this activity. Then write brief notes on each principle.
There are five key principle are presumption of capacity of individual, support to patients so
that they can make their own decision, decision unwise, best interest according to patient,
making fewer restrictive option (Qizilbash, 2015).
Activity 6
This activity reminds you that as a student nurse and then as a registered nurse you have a
duty to advocate for those in your care and raise concerns in an appropriate and timely
manner. This duty applies to all patients you are caring for. However people with dementia
can be particularly vulnerable because of communication barriers and frailty.
1. The Nursing and Midwifery Council provide guidance about ‘Raising and escalating
concerns’ and page 6 is aimed at students. Access this document below and read the
guidance:
https://www.nmc.org.uk/standards/guidance/raising-concerns-guidance-for-nurses-and-
midwives/read-raising-concerns-online/

Note: there is also University of Bedfordshire guidance about raising concerns which you
can access on BREO from the Student Nurse Placements site.
2. There have been repeated reports about poor care of people with dementia. Here is a
link to one such example, which is a report from the Ombudsman.
https://www.ombudsman.org.uk/news-and-blog/news/vulnerable-patients-and-their-families-
suffering-harrowing-ordeals-due-poor
Read this story through and then reflect and make notes below on why such poor care was
apparently not recognised or challenged by the nurses.
The nurses does not provide proper consideration of woman who is suffering from dementia
(Jones, 2014).
3. If you observed a person with dementia who was receiving such poor care: how would
you go about raising your concerns? Use the NMC guidance to write a plan for how you
would go about raising your concerns.
With the help of NMC guideline, the different acts can be applied within the care and
services within the plan (Mahendra, 2012).
Activity 7
There are advocacy services for people with dementia. To find out more, access the
following resources and write some notes:
 Wells S (2007) Dementia Advocacy. Working with Older People: Community Care
Policy & Practice 11(1): 25-7 (available in full text via learning resources)
 Dementia Advocacy Network website
http://pailondon.org.uk/wp-content/uploads/2014/03/
FINAL_COPY_TAKING_THEIR_SIDE_MARCH_2012.pdf
How can you apply understanding about advocacy services for people with dementia to your
role as a nurse in hospital and community setting?
The advocacy services can be provided by describing the benefits to people from which their
rights can proper sustain by health and care service providers (de and Verhey, 2013).
.
Theme eight: End of life care

Dementia is often not perceived as a terminal condition, yet it is as it is not a condition from
which a person can recover. It is a condition that deteriorates with time, though the speed
and nature of that deterioration will vary with the type of dementia, the individual and the
quality of support they receive.
It is possible that this misconception arises from the view that people die from conditions that
are more obviously physical, such as cancer. This lack of appreciation of the terminal nature
of dementia can mean that it is not recognised when a person with dementia has entered the
final stage of their life. Consequently they may not receive the care they need and deserve
to ensure a ‘good’ death.
Activity 1
As a general introduction to this theme, watch the SCIE video on end of life care for people
with dementia [see link below]. Jot down the thoughts that come to your mind as you watch
the video.
Social care TV – end of life care:
http://www.scie.org.uk/socialcaretv/video-player.asp?v=dementiaendoflifecare
The nurses should provide proper care and services to dementia people at the end of life by
recognising the signs appropriately. In addition to this, the reassurance helps patients in their last
days of life (Marpillat, 2013).
Another useful resource for an overview of end of life care for people with dementia is the
NHS ‘Care towards the end of life for people with dementia’ (2010), part of the NHS National
End of Life Care Programme. It can be accessed via the link below:
NHS Care towards the end of life for people with dementia:
http://dementiapartnerships.com/end-of-life-resource-guide/
Activity 2
The failure to recognise that a person with dementia has reached the final stage of their life
can be distressing for the individual and their family. This is because it may result in an
emergency admission to hospital and the use of aggressive interventions, all done with good
intentions but with limited or no benefit to all concerned, and possibly worsening an already
distressing situation.
To assist you in undertaking this activity, explore the SCIE End of Life Care for people with
dementia online resource at the following address:
http://www.scie.org.uk/publications/dementia/understanding-dementia/end-of-life/
Now identify a person with dementia for whom you have recently cared, but who died
within a short time of the initial admission, either in hospital or in another setting, e.g.
in a care home. Answer the following questions:
1. What was the primary reason for the person’s admission to hospital?
The primary reason is pain that has occur within the symptom of dementia (Ritchie, 2016)

2. Had the person been diagnosed as having dementia before they were admitted?
No, the person has not diagnosed with it (Alagiakrishnan, 2013).
3. What do you think were the main issues of concern for the healthcare professionals at
the time of admission?
The main issues is that it was poorly recognised by health care professionals (Richardson,
2013).
4. What do you think were the main issues of concern for the person with dementia and/or
their family at the time of admission?
Yes, this is the main issue of concern at time of admission (Afzal, Bojesen and
Nordestgaard, 2014).
5. If there were differences in the main issues identified in [4] and [5] above, what do you
think were the reasons for the differences?
The health care professionals not have proper communication with patient and family
(Alves, 2014).
6. In retrospect, do you think the healthcare professionals recognised that the person had
reached the final stage of life? Did this recognition [or lack of recognition] influence the
care and healthcare interventions used for this person? If so, how? Write notes below.
The health care professional recognised that the person has occur on the last stage of life
(Kulmala, 2014).
7. Were the views and wishes of the person and their family taken into consideration by the
healthcare team? If so, how was this achieved?

No, there were not wishes of the person (Dening and Sandilyan, 2015).
Activity 3
Pain is a common experience at the end of life and this is no different for people with
dementia. However, the management of pain for people with dementia presents particular
challenges for the family and the healthcare team.
Access the SCIE website below on pain in advanced dementia at:
http://www.scie.org.uk/dementia/advanced-dementia-and-end-of-life-care/end-of-life-care/
pain.asp
Answer the following questions:
1. What are the common causes of pain in dementia?
a) pressure sores
b) skin tears
c) joints stiffening
d) rigidity of muscle
these are the main cause of pain (Samsi and Manthorpe, 2013).
2. How may the phenomenon of diagnostic over-shadowing affect the management of pain
in people with dementia?
The other ways includes use of heat pads, comfortable bed and chair affect the
management of pain (Bayles, McCullough and Tomoeda, 2018).
Activity 4
Read these two articles on assessing pain in people with dementia [access them via the
links below]:
Challenges in pain assessment: https://doi.org/10.1186/s12875-018-0853-z
The role of the nurse in pain assessment: https://doi.org/10.12968/ijpn.2015.21.8.400

Thinking of a person with dementia you have nursed and who may have been in pain,
answer the following questions:
1. What challenges did the healthcare team encounter when assessing the person for
possible pain? Why did these challenges exist?
The team encounter that the respondents were uncertain about the medications that are
used by team (Porter, Buxton and Avidan, 2015).
2. In what ways did the healthcare team try to overcome these challenges in order to
assess the person for pain and the response to analgesic medication? Who did they
involve in the assessment process?
The general practitioner provides the pain report to patients and value of using it (Aguirre,
2013).
Activity 5
A specific pain assessment tool for use with people with dementia, the Abbey Pain Scale,
has been developed and can be accessed at the site below:
Abbey Pain Scale: http://prc.coh.org/PainNOA/Abbey_Tool.pdf
1. Thinking about the person with dementia who was in pain that you encountered in
practice, was this, or a similar pain assessment tool, used?
Yes, the similar pain assessment tool is used (Lukas, 2012).
2. If it was used, how helpful was this tool in practice?
It helps in improving the management regarding patient (Ferrer, 2012).
3. If it wasn’t used, how might the tool have helped the team to effectively manage the pain
of the person with dementia?
Yes, it was used (Shinagawa, 2014)

4. Finally, if you believe this is a useful pain assessment tool and that it should be used in
the acute hospital setting, make suggestions about how you would go about
implementing it within the practice environment.
Yes, this is a useful assessment tool that can used with in difficult patients.
Theme nine: Evaluation of care and service improvement
Activity 4
1. As a future registered nurse, with leadership responsibilities what actions will you take to
ensure that people with dementia and their informal carers, receive the best possible
care that you and your team can provide?
I will take action regarding the rights of patients while providing those services and care. The
implementation of acts of dementia within care (Huang, 2012).
2. Write down five actions which you will take, with a rationale for each.
1 The communication
2 Involvement of family members
3 Providing all information to patients
4 Implementation of acts
5 Considering the needs of patients (Benbow, 2012).
REFERENCES
Books and journals
Afzal, S., Bojesen, S.E. and Nordestgaard, B.G., 2014. Reduced 25-hydroxyvitamin D and
risk of Alzheimer’s disease and vascular dementia. Alzheimer's & Dementia, 10(3),
pp.296-302.
Aguirre, E., Woods, R.T., Spector, A. and Orrell, M., 2013. Cognitive stimulation for
dementia: a systematic review of the evidence of effectiveness from randomised
controlled trials. Ageing research reviews, 12(1), pp.253-262.
Alagiakrishnan, K., and et. al., 2013. Evaluation and management of oropharyngeal
dysphagia in different types of dementia: a systematic review. Archives of
gerontology and geriatrics, 56(1), pp.1-9.
Alladi, S., and et. al., 2013. Bilingualism delays age at onset of dementia, independent of
education and immigration status. Neurology, 81(22), pp.1938-1944.

Alves, G., and et. al., 2014. CSF Aβ42 predicts early-onset dementia in Parkinson
disease. Neurology, 82(20), pp.1784-1790.
Bayles, K., McCullough, K. and Tomoeda, C.K., 2018. Cognitive-communication Disorders
of MCI and Dementia: Definition, Assessment, and Clinical Management. Plural
Publishing.
Benbow, S.M. and Jolley, D., 2012. Dementia: stigma and its effects. Neurodegenerative
Disease Management, 2(2), pp.165-172.
Bennett, S. and Thomas, A.J., 2014. Depression and dementia: cause, consequence or
coincidence?. Maturitas, 79(2), pp.184-190.
Biessels, G.J., and et. al., 2014. Dementia and cognitive decline in type 2 diabetes and
prediabetic stages: towards targeted interventions. The lancet Diabetes &
endocrinology, 2(3), pp.246-255.
Brooker, D. and Latham, I., 2015. Person-centred dementia care: Making services better with
the VIPS framework. Jessica Kingsley Publishers.
Burrell, J.R., and et. al., 2016. The frontotemporal dementia-motor neuron disease
continuum. The Lancet, 388(10047), pp.919-931.
Cotelli, M., Manenti, R. and Zanetti, O., 2012. Reminiscence therapy in dementia: A
review. Maturitas, 72(3), pp.203-205.
de Vugt, M.E. and Verhey, F.R., 2013. The impact of early dementia diagnosis and
intervention on informal caregivers. Progress in neurobiology, 110, pp.54-62.
Dening, T. and Sandilyan, M.B., 2015. Dementia: definitions and types. Nursing Standard
(2014+), 29(37), p.37.
Exalto, L.G., and et. al., 2012. An update on type 2 diabetes, vascular dementia and
Alzheimer's disease. Experimental gerontology, 47(11), pp.858-864.
Ferrer, I., 2012. Defining Alzheimer as a common age-related neurodegenerative process not
inevitably leading to dementia. Progress in neurobiology, 97(1), pp.38-51.
Freud, S., 2014. Psycho-analytic notes on an autobiographical account of a case of paranoia
(dementia paranoides). Read Books Ltd.
Gallacher, J., and et. al., 2012. Auditory threshold, phonologic demand, and incident
dementia. Neurology, 79(15), pp.1583-1590.
Hsieh, S., and et. al., 2013. Validation of the Addenbrooke's Cognitive Examination III in
frontotemporal dementia and Alzheimer's disease. Dementia and geriatric cognitive
disorders, 36(3-4), pp.242-250.
Huang, S.S., Lee, M.C., Liao, Y.C., Wang, W.F. and Lai, T.J., 2012. Caregiver burden
associated with behavioral and psychological symptoms of dementia (BPSD) in
Taiwanese elderly. Archives of gerontology and geriatrics, 55(1), pp.55-59.
Jessen, F., and et. al., 2014. AD dementia risk in late MCI, in early MCI, and in subjective
memory impairment. Alzheimer's & Dementia, 10(1), pp.76-83.

Jones, G. and Miesen, B., 2013. Care-Giving In Dementia 2. Routledge.
Jones, S.V. and O'brien, J.T., 2014. The prevalence and incidence of dementia with Lewy
bodies: a systematic review of population and clinical studies. Psychological
medicine, 44(4), pp.673-683.
Jung, C.G., 2015. Psychology of dementia praecox. Princeton University Press.
Kessing, L.V., 2012. Depression and the risk for dementia. Current opinion in
psychiatry, 25(6), pp.457-461.
Kulmala, J., and et. al., 2014. Association between frailty and dementia: a population-based
study. Gerontology, 60(1), pp.16-21.
Lourida, I., and et. al., 2013. Mediterranean diet, cognitive function, and dementia: a
systematic review. Epidemiology, pp.479-489.
Lukas, A., Schuler, M., Fischer, T.W., Gibson, S.J., Savvas, S.M., Nikolaus, T. and
Denkinger, M., 2012. Pain and dementia. Zeitschrift für Gerontologie und
Geriatrie, 45(1), pp.45-49.
Mahendra, B., 2012. Dementia: A survey of the syndrome of dementia. Springer Science &
Business Media.
Marpillat, N.L., and et. al., 2013. Antihypertensive classes, cognitive decline and incidence of
dementia: a network meta-analysis. Journal of hypertension, 31(6), pp.1073-1082.
McDermott, O., and et. al., 2013. Music therapy in dementia: a narrative synthesis systematic
review. International journal of geriatric psychiatry, 28(8), pp.781-794.
Miesen, B., 2016. Dementia in close-up. Routledge.
Mioshi, E., and et. al., 2013. The impact of dementia severity on caregiver burden in
frontotemporal dementia and Alzheimer disease. Alzheimer Disease & Associated
Disorders, 27(1), pp.68-73.
Pagonabarraga, J. and Kulisevsky, J., 2012. Cognitive impairment and dementia in
Parkinson's disease. Neurobiology of disease, 46(3), pp.590-596.
Porter, V.R., Buxton, W.G. and Avidan, A.Y., 2015. Sleep, cognition and dementia. Current
psychiatry reports, 17(12), p.97.
Prince, M., and et. al., 2013. The global prevalence of dementia: a systematic review and
metaanalysis. Alzheimer's & dementia, 9(1), pp.63-75.
Prins, N.D. and Scheltens, P., 2015. White matter hyperintensities, cognitive impairment and
dementia: an update. Nature Reviews Neurology, 11(3), p.157.
Qiu, C., von Strauss, E., Bäckman, L., Winblad, B. and Fratiglioni, L., 2013. Twenty-year
changes in dementia occurrence suggest decreasing incidence in central Stockholm,
Sweden. Neurology, 80(20), pp.1888-1894.
Qizilbash, N., and et. al., 2015. BMI and risk of dementia in two million people over two
decades: a retrospective cohort study. The lancet Diabetes & endocrinology, 3(6),
pp.431-436.

Richardson, T.J., and et. al., 2013. Caregiver health: health of caregivers of Alzheimer’s and
other dementia patients. Current psychiatry reports, 15(7), p.367.
Ritchie, C.W., and et. al., 2016. Development of interventions for the secondary prevention
of Alzheimer's dementia: the European Prevention of Alzheimer's Dementia (EPAD)
project. The Lancet Psychiatry, 3(2), pp.179-186.
Rohrer, J.D., and et. al., 2015. C9orf72 expansions in frontotemporal dementia and
amyotrophic lateral sclerosis. The Lancet Neurology, 14(3), pp.291-301.
Samsi, K. and Manthorpe, J., 2013. Everyday decision-making in dementia: findings from a
longitudinal interview study of people with dementia and family
carers. International psychogeriatrics, 25(6), pp.949-961.
Shinagawa, S., Nakajima, S., Plitman, E., Graff-Guerrero, A., Mimura, M., Nakayama, K.
and Miller, B.L., 2014. Psychosis in frontotemporal dementia. Journal of
Alzheimer's disease, 42(2), pp.485-499.
Stokes, G., 2017. Challenging behaviour in dementia: a person-centred approach. Taylor &
Francis.
Swinton, J., 2017. Dementia: Living in the memories of God. Scm Press.
Todd, S., Barr, S., Roberts, M. and Passmore, A.P., 2013. Survival in dementia and predictors
of mortality: a review. International journal of geriatric psychiatry, 28(11),
pp.1109-1124.
Williams, R.J. and Spencer, J.P., 2012. Flavonoids, cognition, and dementia: actions,
mechanisms, and potential therapeutic utility for Alzheimer disease. Free Radical
Biology and Medicine, 52(1), pp.35-45.
Zhang, Y., and et. al., 2012. Prevalence of dementia and major dementia subtypes in the
Chinese populations: a meta-analysis of dementia prevalence surveys, 1980–
2010. Journal of Clinical Neuroscience, 19(10), pp.1333-1337.