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This is not an Agored Cymru publication. It has been developed by colleagues from Cwm Taf University Health Board and is currently being
hosted by Agored Cymru until a more suitable site becomes available.
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To be aware of the common emotional problems
after a stroke
To have an opportunity to reflect and discuss the
personal experience of having a stroke
To understand how to identify different emotional
problems after a stroke
To be aware of the emotional problems experiences
by relatives

The changes in an individual’s life and
relationships after stroke usually follow a
known process of adjustment
(Alvarez, 1997)
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Shock
Retreat, denial or disbelief
Grief, mourning & depression
Hostility & anger
Adjustment
Group discussion
Imagine that: you wake up tomorrow and you
have had a stroke, which means that:
You cannot move your left arm and leg, and you
cannot remember day-to-day events

What would change in your life?
 What would you lose?
 How would you feel?
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Emotional
Physical
Cognitive
Behavioural
Social
Vocational
Sexual relationships
Family relationships
“Now here I was, a week later, unable to get
out of bed. I have relived this moment a
thousand times in a fruitless quest for some
explanation – the moment when my life divided
into ‘old’ and ‘new’”

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“ Literally overnight, I was changed from being
someone who could order an expensive meal in
a fashionable restaurant to being an
incontinent carcass, quite unable to make any
sense of my body… my limbs not responding.”
Quotes from patients

Patients often focus on their ‘old self’ and go
over and over things they recall from the past
and sometimes who they might have been
without the stroke

May be accompanied by lack of insight and
decreased awareness of their current abilities
and deficits

Need to re-define identity and self-image

Need to create a ‘new future’
Emotion focused:
“I feel better by drinking”

Problem solving:
“I got advice” “I can use strategies”

Wishful thinking:
“If only I could get my old life back”

Multifactorial:
 Physical/medical symptoms
 Cognitive impairment
 Emotional consequences
 Premorbid functioning
 Family and social environment/support
All factors interact in a complex pattern!!
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Prevalence of depression following stroke is
around 33%
(Hackett, 2005)
Location or severity of stroke has not been
proved significant factor
Diagnosis is a complex task
Fluctuating course over time
Negative impact of untreated depression on
recovery
“It is difficult not to be depressed when
your life has been fundamentally
changed for the worse”
Anonymous Service User

Depression is not an inevitable
consequence of stroke and much can be
done to help those who have a depressive
episode
(Kneebone and Dunmore, 2000)

Clinical guidelines indicate the need to be
alert to the possibility of depression, with
strong research evidence
(Gresham et al. 1995)

40% anxious 12 months post stroke

10% of stroke patients show post-traumatic
anxiety in response to their stroke event and
aftermath
– Generalised anxiety
– Phobias
– Panic
- Obsessive and compulsive symptoms
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Uncontrolled crying or laughing not apparently
connected to external stimuli
Changes in arousal (flat, or agitated and
unsettled)
Attributed to damage caused by stroke; or
Mood disorder; or
Adjustment reaction to having a stroke
“I cried a lot in hospital. Sometimes the
tears were slow and weepy; at others,
uncontrolled and desperate. I could cry
for any reason and none”
Stroke patient
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Traumatic event
Away from security of familiar home
environment, family, friends
Will meet many different health professionals
May be unable to remember faces, names, roles
Unfamiliar language, jargon
Unfamiliar people
Little or no privacy or peace
Exercise 2
The Experience Of Being In Hospital
How would you feel if…..

Someone approaches you in the street and starts speaking
to you in a foreign language. You tell them that you don’t
understand, but they keep on repeating themselves.
•
You are feeling really angry/frustrated about something,
but nobody around you will take your grievance seriously
and they keep telling you that everything is fine
•
You are asleep in a chair at home when suddenly you are
woken up by a person you have never seen before trying to
undress you.
•
You are trying to get dressed but it seems that someone
has stitched up the sleeves of your jumper, removed some
buttons from your jacket and hidden your shoes
Screens should be carried out early on, and
repeated if there are significant symptoms
 Typical routine assessment
E.g. HADS – Administered by nurses, medics,
OT, PT, SALT
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Alternative screening for people with aphasia –
DISCs, SADQ-(H)

Mood screening is responsibility of whole MDT
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Techniques for managing anxiety symptoms/
stress
Individual counselling/therapy/CBT
Emotional adjustment - telling your story

Stroke Adjustment Groups
Based on models of loss, grieving & coping

Psychology led, but MDT input
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Is the stress different for families coping with a
relative who has physical disabilities?

Similar – loss, family disruption, dependence
and practical problems

Studies show that carers find it more difficult
to understand and cope with non-physical
consequences, such as personality change and
mood disorders
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Feelings of confusion
Depression
Anxiety
Guilt
Isolation
In the acute - onset is recent and family
members may be feeling overwhelmed and in
crisis
“...the entire family unit are progressing through
a mourning process. Since the person with the
disability has survived as a new and different
individual, the ritual is incomplete. The people
involved are mourning abilities and qualities of a
person, while adjusting to a person who behaves
differently.”
(Leber & Jenkins, 1996)
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Extent of the disability /dependence
Cognitive/personality challenges poorer adjustment
than physical
Coping styles of family members
Quality of the pre-morbid relationship – unresolved
issues?
Network of relationships (subsystems) that exist
within the family
Family values and cultures

Need to be multi-dimensional:

Education
Family intervention
Direct psychotherapy for a family member(s)
Referral to Stroke Association – support group or other
community resources
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Just listening and trying to understand the family’s
experience!!
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It is difficult to separate cognitive, emotional,
social and functional aspects of stroke
Support for patients and carers/families with all
aspects is critical for maximising the best longterm psychosocial outcomes
Always keep in mind the non-physical ‘invisible’
impairments!!

Reading:
◦ ‘Psychological Management of Stroke’ by Lincoln,
Kneebone, Macniven and Morris, 2012
◦ ‘Psychological care after stroke: Improving stroke
service services for people with cognitive and mood
disorders’ www.improvement.nhs.uk/stroke

Development away from purely ‘medical
model’ of patients having things ‘done to
them’, patient being passive
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Means that the person becomes empowered
to make changes and impacting on recovery
and rehabilitation
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The person’s wishes and viewpoints are central
to the process of rehabilitation- their goals!
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What’s the point? We don’t have time!
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Active engagement in rehabilitation is wellestablished as one of the best predictors of positive
physical and psychological adjustment
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Good evidence base!!
Motivation to engage!
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Welsh Assembly Government
Goal planning to start at the acute stage
Acute and Rehabilitation Care Bundles
Intelligent Targets
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‘ the identification of, and agreement on, a target
which the patient, therapist or team will work towards
a specified period of time’
◦ Royal College of Physicians Clinical Guidelines for Stroke , 2005
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Collaborative and person centred practice (QR1 in
NSF for Long Term Conditions)
Increases motivation and structure for patient and
therapist
Helps communication (make it visual and concrete)
Tool for tracking and communicating change
Use to evaluate and demonstrate effectiveness of
rehabilitation
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S pecific
M easurable
A chievable
R ealistic
T ime limited

Ask the question during goal planning meeting :
◦ What are the things that are important to you? What
would you like to achieve in rehabilitation? What
would you like to be able to do when you go home?
◦ If the patient can’t be present/its not appropriate
involve family members!
Break down to simple steps:
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◦
‘Go to corner shop’
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Build up stamina in gym for 10 mins
Walk 100m down corridor/ street
Walk 200m down corridor/ street with short rest
Distinguish MDTs actions from patient’s goal! E.g.
prescribe medication, order a zimmer frame
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Keep it simple!
Better to do a couple of goals well than five half done
Record goals: visually and in simple language
Review progress
Use process and pathway in place in the service
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Its is a skill you can develop – keep practising
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1.
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5.
Pair up with your neighbour
Have a goal planning meeting What would you like to
change?
Discuss how to achieve and break it down
Set a time scale
Record the goal and the sub goals – Make it visual!
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To reach their maximum level of independence
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To maximise their quality of life and sense of control
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Provides more successful outcomes, reduces disability
and increases quality of life
Starting process at the acute stage - patients and
families become an integral part of the process
Empowerment/collaboration – increasing patient
control improves psychological well-being
Recognised as a core procedure of rehabilitation
Provides audit information
Measures change
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Empowering patients and families earlier in the
process of recovery to understand the concept of
doing things ‘for oneself’ (rehabilitation) versus
‘doing for’ (traditional medical model)
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Improves co-ordination and co-operation
between all concerned
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Paper:
◦ Wade, 1999, Goal planning in stroke rehabilitation: How?,
Topics in Stroke Rehabilitation, 6(2), 16-36