Introduction to dementia and

effective communication for
healthcare professionals with
patients living with dementia
Elisabeth Serrano
Dementia: what is it?
Elisabeth Serrano Prieto
Ten glorious seconds
Ten Glorious Seconds
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Facts About Dementia in the UK
• According to Dementia.org.uk, dementia is one of
the main causes of disability in later life, ahead of
some cancers, cardiovascular disease and stroke.
• Over 820,000 people are estimated to be
suffering from late onset dementia in the UK in
2010
• By 2025, the number is expected to rise to one
million. By 2051, it is projected to exceed 1.7
million
• One in three people over 65 will die with a form
of dementia.
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Dementia
Definition:
Dementia is a syndrome (a group of related symptoms) that is associated
with an ongoing decline of the brain and its abilities. These include:
• memory
• thinking
• language
• understanding
• judgement
People with dementia may also become apathetic, have problems controlling
their emotions or behaving appropriately in social situations. Aspects of their
personality may change or they may see or hear things that other people do
not, or have false beliefs. Most cases of dementia are caused by damage to
the structure of the brain. People with dementia usually need help from
friends or relatives, including help in making decisions.
Definition taken from NHS, available at: http://www.nhs.uk/Conditions/Dementia/Pages/Introduction.aspx

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General early symptoms
Patients should seek help without delay if their memory is not as good
as it used to be and especially if they:
• struggle to remember recent events, although they can easily recall
things that happened in the past
• find it hard to follow conversations or programmes on TV
• forget the names of friends or everyday objects
• cannot recall things theyhave heard, seen or read
• notice that they repeat themselves or lose the thread of what they
are saying
• have problems thinking and reasoning
• feel anxious, depressed or angry about memory loss
• find that other people start to comment on their memory loss
• feel confused even when in a familiar environment.
Extract from: http://www.slh.nhs.uk/media/documents/worried-about-your-memory-poster.pdf
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Differentiating normal aging and dementia

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Types of dementia
1. Alzheimer’s Disease
2. Vascular Dementia
3. Lewy Body Dementia
4. Other rarer causes of Dementia

Types of dementia:
Alzheimer’s Disease (AD)
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Alzheimer’s Disease
• Most common cause of dementia
• Symptoms: gradual decline in thinking
abilities. Nearly all brain functions (memory,
movement, language, judgement, behaviour,
and abstract thinking) are eventually affected.
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Alzheimer’s Disease (AD)
• Characteristics:
Two abnormalities in the brain:
- Amyloid plaques: unusual clumps of a beta
amyloid protein, and degenerating bits of
neurons and other cells.
- Neurofribillary tangles: bundles of twisted
filaments found within neurons made of a
protein called tau.
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Elisabeth Serrano Prieto
Alzheimer’s Disease
• As the disease progresses patients are more
limited in their daily activities. Emotions and
behaviour are also affected.
• Patients may become disorientated, suffer
delusions.
• During the later stages patients lose the
ability to control motor functions
(swallowing, bowel and bladder control)
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Alzheimer’s Disease
• On average, patients with Alzheimer's disease
live for 8 to 10 years after they are diagnosed.
However, some people live as long as 20 years.
• Patients with Alzheimer's disease often die of
aspiration pneumonia because they lose the
ability to swallow late in the course of the
disease.

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Elisabeth Serrano Prieto
Types of dementia:
Vascular Dementia (VaD)
Vascular dementia (VaD)
• VaD: second most common cause of
dementia.
• Decline in mental abilities due to brain
damage from cerebrovascular or
cardiovascular problems.
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Vascular dementia (VaD)
Characteristics:
• Unlike AD VaD patients often maintain their
personality and normal levels of emotional
responsiveness until the later stages of the
disease.
• People with VaD often wander at night, and
suffer from other problems commonly found
in stroke patients (depression and
incontinence)
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Risk factors predisposing individuals to VaD
• Hypertension
• Cardiovascular disease
• Smoking
• Excessive alcohol consumption
• Diabetes Mellitus
• Lower educational background
• Hyperlipidemis
• Old age
• History of previous strokes

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Elisabeth Serrano Prieto
Types of dementia:
Lewy Body Disease (LBD)
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Lewy Body Disease
• Lewy body dementia (LBD) is the third most
common types dementia.
• LBD usually occurs sporadically
• Abnormal structures, known as Lewy bodies,
develop inside the brain.


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Lewy Body Dementia
Characteristics
• In Lewy body dementia, cells die in the brain's
cortex (outer layer), and in a part of the mid-brain
called the substantia nigra. Many of the
remaining nerve cells in the substantia nigra
contain abnormal structures called Lewy bodies.
• Memory impairment, poor judgement,
confusion. LBD also includes visual
hallucinations, parkinsonian symptoms.
• LBD patients live an average of 7 years after
symptoms begin.

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Rarer Causes of dementia
• Creuzfeldt-Jakob Disease
• Huntington’s Disease
• Chronic Traumatic Encephalopathy (Boxer’s Syndrome)
• Dementia due to HIV
• Parkinson’s Disease

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Ethical Issues
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1. Driving
2. Competence or
capacity
3. Valid consent
1. Driving and dementia
• Driving is unsafe for people with dementia and
can also endanger others.
• Healthcare professionals need to remind a person
with a diagnosis of dementia of the patient’s legal
obligation to inform the UK Driver and Vehicle
Licensing Agency of their condition.
• If there are concerns that a patient who should
not be driving is doing so, it is a permissible
breach of confidentiality to inform the DVLA.
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2. Competence/Capacity
General criteria for competence:

A person should be able to:
• Understand information relevant to the required decision
• Use the information rationally, e.g. make a risk/benefit
comparison
• Appreciate the situation and its consequences
• Communicate choices

In legal and medical “jargon” the terms are different but mean
the same: COMPETENCE (MEDS), CAPACITY (LAWYERS).

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3. Valid consent
Health and social care professionals should always
seek valid consent from people with dementia.
This should entail informing the person of options,
and checking that he or she understands, that there
is no coercion and that he or she continues to
consent over time.
If the person lacks the capacity to make a decision,
the provisions of the Mental Capacity Act 2005
must be followed.

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Proposals currently being put forward
• Capacity Assesment
• Proxy consent: relatives
• Fluctuating capacity
• Proposals for change:
– Graduated consent for graduated risk
– Joint consent
– Risk assessment

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”The ethics of consent in delirium studies” Journal of Psycvhosomatic
Reseach 65 (2008) 283-287
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COMMUNICATION
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What would you do?
• Case scenario:

“An elderly dementia patient tries to leave the
ward as she says that she has to go home to
cook her father’s tea. She is angry when you
ask her to stay on the ward as she fears he is
expecting her home soon and she will be in
trouble”

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Methods to improve communication
• Communication vs conversation:
– Seven step guide
– Good Medical Practice Guidelines
– NICE Guidelines
– VERA Framework
– 19 tips for communicating with PLWD
– Other methods: singing for the brain



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Good Medical Practice Guidelines
Good communication
22 To communicate effectively you must:
(a) listen to patients, ask for and respect their views
about their health, and respond to their concerns
and preferences
(b) share with patients, in a way they can understand, the
information they want or need to know about their
condition, its likely progression, and the treatment
options available to them, including associated risks
and uncertainties
(c) respond to patients’ questions and keep them informed
about the progress of their care
(d) make sure that patients are informed about how
information is shared within teams and among those
who will be providing their care.
23 You must make sure, wherever practical, that
arrangements
are made to meet patients’ language and communication
needs.

Full text available at: http://www.gmc-uk.org/static/documents/content/GMP_0910.pdf

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NICE Guidelines
http://www.gmc-uk.org/guidance/index.asp
• Good Medical Practice
http://www.gmc-uk.org/static/documents/content/GMP_0910.pdf
•Consent:
http://www.gmc-uk.org/static/documents/content/Consent_0510.pdf
• Interactive Case Studies:
http://www.gmc-uk.org/guidance/index.asp
• Advice for medical students:
http://www.gmc-uk.org/education/undergraduate/professional_behaviour.asp

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NICE GUIDELINES
• Patients who show a Mild Cognitive
Impairment, should be assessed as soon as
possible, as most patients who show MCI,
have a 50% chance of later developing
dementia.

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MINI MENTAL STATE EXAM
• Case example of deterioration on the same
exam:

• Example





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VERA Framework
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VERA FRAMEWORK
• Published as an article to offer guidance for
student nurses communicating with patients with
dementia.
• The framework is based on 4 key concepts:
validation, emotion, reassurance, activity.
• Framework was developed in response to
students who said they find it useful to have
structured guidance on how to interact with
people who have dementia. The VERA framework
offers a means of interpreting communication
and responding appropriately.

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Validation
“A genuine acceptance of the client at face value and includes an empathic search for justification
of the client’s experience”. Validation therapy does not attempt to impose a current reality in
terms of dates or times; rather, the therapist explores the underlying meaning of the client’s
behaviour and speech. This approach offers helpful communication techniques and can assist
practitioners to develop an understanding of what may appear to be confused and inappropriate
behaviour. Validation therefore is the act of giving value to a person’s behaviour rather than
assuming it is merely a symptom of a degenerative brain condition. It challenges the notion that
actions with no apparent meaning or significance should be ignored or responded to
behaviourally. Acceptance of the person, regardless of behaviour, is central to the development
of a supportive and therapeutic relationship, based on “unconditional positive regard”. (Rogers
1961)
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Emotion
• This step in the vera scheme develops the idea of paying attention to the emotional content
of the communication, rather than the unintelligible verbal content. Paying attention to the
emotional content underlying an attempt to communicate ensures that meaning is extracted
from communication that is difficult to understand.

• Experienced and skilled practitioners are able to respond and make a connection with people
who are confused, even when the words the person uses to express him or herself are
unintelligible or out of context. This is achieved by listening for and acknowledging the
emotional content of the communication and finding a matching emotional response to it.

• To develop an understanding of a person’s emotional communication health carers need to be
skilled listeners and observers, and pay attention to body language, vocal tone and facial
expression all of which communicate a message about a person’s emotional state at the
moment.

• This has to be accompanied by a GENUINELY felt verbal sentiment, genuine interest in the
person and a belief in one’s ability to make a connection with the patient.

• By trying to reach an understanding of how a patient perceives the world, healthcare
professionals avoid the CONFLICT that could be caused by insisting that their view is one that
must be accepted.
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Reassurance
Reassurance is any verbal or non-verbal communication that seeks to
reduce a person’s distress by demonstrating kindness and optimism.
Reassurance can be conveyed by saying “it will be ok”, or through a
kind smile or a moment of hand holding. (Teasdale 1989).
Humanistic traits, skills and attributes, and what the patient is being
told create an experience of TRUST between the patient and the
health professional. Reassuring interactions have been coupled with
an assertion of optimism.
Reassurance implies action.
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Activity
The activity should be an attempt to engage the
person in a more structured activity that
offers a degree of occupation.
The activity that emerges may link to an
understanding of the confused behaviour or
could be designed merely to create social
interaction with other people as an act of
joining with the person as a human being.

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After Activity
• Recording positive or negative outcomes
• Discussing the effect of the interaction with
other members of the team
• Moment of reflection on the practitioner’s
responses to the four elements of the VERA
framework.
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19 tips for communicating with PLWD
1. Do not talk to the patient as if he/she is
not present.
2. You need the patient’s attention to start
communication.
3. Minimize distractions.
4. Move slowly and approach from the front,
rather than the side or behind.
5. Look eye to eye.
6. Call the patient by his/her preferred ame.
7. Make your verbal and nonverbal messages
the same.
8. Use simple, adult appropriate words.
9. Don’t patronize.
10. Slow your rate of speech.




11. Give one message at a time.
12. Listen for a response and allow time for
the patient to respond.
13. Repeat the question or request using the
same words, if necessary.
14. Be patient and keep it simple.
15. Acknowledge the patient’s concerns and
questions.
16. Use words that express respect and
understanding.
17. Give the patient your undivided
attention.
18. Use appropriate touch if the patient
enjoys it.
19. Look friendly: your attitude is contagious.


Marge Coalman. “The invisible population”. The Journal on Active
Aging. Issue September 2002

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Possible Response to Case Scenario
• Validate: “You’re trying to get home in time to get
tea, Joan?”
• Emotion: “You sounded quite upset and a bit
worried.”
• Reassure: “We will make sure you’re ok, Joan.
You are not in any trouble.”
• Activity: “Come with me – we’ll make some tea to
take your mind off it.”
The success or failure of the activity is recorded and
handed over to other members of the care team.
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Other methods: singing for the brain
Singing for the Brain

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Conclusion
• Effective communication is one of the key
points for excellent healthcare.
• Remember VERA!
• Read Good Medical Practice Guidelines
• Good luck!

Elisabeth Serrano Prieto
Thank you all for listening!

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