complexity of dementia dementia
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Transcript complexity of dementia dementia
GERRY BROPHY
Training in Care Solutions 2015
' Assessing people with dementia and their carers in line with the
guiding principles of the Care Act and the key principles of the Mental
Capacity Act
' Personhood and positive person work in the context of crisis
intervention
' Understanding challenging behaviour in the context of
communication difficulties and relationship aspects of dementia
' Risk enablement in working with people with dementia and their
carers
' Positive and negative interactions with a person with dementia in
crisis
' Empowering and involving the person with dementia and their carers
' Using the 'ABC' approach in understanding challenging behaviour
' Crisis care planning in the context of person-centered care
What do we know about Dementia
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PreDiagnoses
Diagnoses
Living
with
Dementia
End of
Life and
after
death
People with dementia are firstly
people like you and me.
Training is a block to stand on
and build from, but it cannot
stand alone.
Extra care can provide the
support that people with
dementia need without the
institutionalisation of care
homes; it can be the ideal
environment to take someone
through the varying stages of
dementia whilst remaining in
their own home and retaining
their independence for as long
as possible.
Dementia is a triad of problems: memory loss, decline
in some other aspect of cognition, and difficulties
with activities of daily living.
More formally, dementia is defined as a syndrome
(that is, a distinct pattern of symptoms and signs)
that can be caused by many brain disorders, most of
which progress gradually over several years.
Symptoms have usually been present for at least
6 months, and activities of daily living are impaired
by the decline in memory and thinking.
Will become end of life care situation.
There are currently
more than 700,000
people with dementia in
the UK.
There are currently
15,000 younger people
with dementia in the UK.
There are over 11,500
people with dementia
from black and minority
ethnic groups in the UK.
There will be over a
million people with
dementia by 2025.
One third of people over
95 have dementia.
64% of people living in
care homes have a form
of dementia.
One third of people over 95 have dementia
60,000 deaths a year are directly attributable to
dementia
One in three people over 65 will die with dementia
1 in 100 people aged 65-69 have dementia
1 in 25 people aged 70-79 have dementia
I in 6 people aged 80 and over have dementia
1 in 14 people over 65 have dementia
Only forty per cent of people with dementia
receive a formal diagnosis
Providing effective support in the community to reduce the
time a person with dementia spends on a hospital ward by
one week could save at least £80 million a year.
Up to 150,000 people with dementia in the UK are being
inappropriately prescribed antipsychotic drugs and these
are contributing to 1,800 deaths a year.
Alzheimer's
Vascular
Lewy Body
Fronto-temporal
Korsakoff’s
Creutzfeldt-Jakob disease, (prion disease)
Down’s Syndrome and Huntington's
Aids related cognitive impairment
Vascular dementia is a type of dementia caused
by problems in the supply of blood to the brain.
If the vascular system within the brain
becomes damaged and blood cannot reach the
brain cells, the cells will eventually die. This
can lead to the onset of vascular dementia.
There are a number of conditions that can
cause or increase damage to the vascular
system. These include high blood pressure,
heart problems, high cholesterol and diabetes.
problems concentrating and communicating
depression accompanying the dementia
symptoms of stroke, such as physical weakness or
paralysis
memory problems (although this may not be the
first symptom)
a 'stepped' progression, with symptoms remaining
at a constant level and then suddenly deteriorating
epileptic seizures
periods of acute confusion.
hallucinations (seeing things that do not
exist)
delusions (believing things that are not
true)
walking about and getting lost
physical or verbal aggression
restlessness
incontinence.
It is more likely to affect younger people specifically those under the age of 65 - and
it is slightly more common in men.
lack insight, and lose the ability to empathise with
others. This can make them appear selfish and unfeeling
become extrovert when they were previously
introverted, or withdrawn when they were previously
outgoing
behave inappropriately - for example, making tactless
comments, joking at the 'wrong' moments, or being rude.
lose their inhibitions - for example, exhibiting sexual
behaviour in public
become aggressive
be easily distracted
develop routines - for example, compulsive rituals.
Cortical - Disorder affecting
the cortex, the outer portion
or layers of the brain.
Alzheimer’s and CreutzfeldtJakob are two forms of
cortical dementia
Memory and language
difficulties(Aphasia) most
pronounced symptoms.
Aphasia is the inability to
recall words and understand
common language.
Sub-cortical - Dysfunction in
parts of the brain that are
beneath the cortex.
Memory loss & language
difficulties not present or
less severe than cortical.
Huntington’s disease and
AIDS dementia complex.
Changes in their personality
and attention span.
Thinking slows down.
Focus Training Anglia Ltd 2008
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The brain is made up of billions of neurons, or
nerve cells. These are the electrically
charged units that, as they communicate with
each other, organize electrical energy to
make the brain work.
Loss of Memory
Aphasia
Apraxia - (decreased
ability to perform physical
tasks such as dressing,
eating, ADL’s
Delusions
Inability to learn new
tasks
Loss of judgment and
reason
Loss of inhibitions and
belligerence
Social Withdrawal
Visual hallucinations
Easily lost and confused
Early Stage
Middle Stage
Late Stage
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forget about recent conversations or events
repeat themselves
become slower at grasping new ideas, or lose the thread
of what is being said
sometimes become confused
show poor judgement, or find it harder to make
decisions
lose interest in other people or activities
develop a readiness to blame others for taking mislaid
items
become unwilling to try out new things or adapt to
change.
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Characteristics
Poor personal hygiene
Need assistance with ADLs
Disturbed sleep
Unable to remember names
Loss of short-term recall
May display anxious,
agitated, delusional, or
obsessive behavior
May be physically or verbally
aggressive
Inability to carry on a
conversation
May use “word salad” (sentence
fragments)
Posture may be altered
Disoriented to time and place
May ask questions repeatedly
Characteristics
Loss of verbal articulation
Loss of ambulation
Bowel and bladder
incontinence
Extended sleep patterns
Unresponsive to most
stimuli
Interventions
Caring for physical
needs
Maintain integrity of the
skin
Medical interventions
Most activities are
inaccessible
Training in Care Solutions 2015
I believe that people with dementia can
make a choice, be it an oral answer, a nod or
shake of the head, or perhaps moving a part
of their body such as a finger.
The trick is to get to know how they best
communicate and go down that line.
James McKillop (Scottish Dementia
Working Group)
We need professionals to work with us, not
exclude us and realise we are often the key
to understanding the person with dementia
Uniting Carers, Dementia UK
Personhood :
A standing or a status that is bestowed upon
one human being, by others, in the context
of relationship and social being. It implies
recognition and trust.
Kitwood (1997) Dementia Reconsidered: the person comes first
Intimidation
Withholding
Outpacing
Infantilization
Labelling
Disparagement
Accusation
Treachery
Invalidation
Disempowerment
Imposition
Disruption
Objectification
Stigmatization
Ignoring
Banishment
Mockery
Warmth
Holding
Relaxed pace
Respect
Acceptance
Celebration
Acknowledgement
Genuineness
Validation
Empowerment
Facilitation
Enabling
Collaboration
Recognition
Including
Belonging
Fun
Person with
Dementia
Practitioner
Family
Members/
Friends
“Person centred care is founded on the
ethic that all human beings are of
absolute value and worthy of respect, no
matter their disability, and on a
conviction that people with dementia can
live fulfilling lives.”
Improved quality of life for the those with dementia
can be acquired when people are involved in social
activities and encouraged to become engaged in their
past pleasures. Also person centred care can help in
sustaining a good relationship between the carer and
the person affected by dementia, which in turn can
maintain the care recipient’s high level of psychological
well-being and productive behaviours and reduce
depression.
Less agitation. Studies have shown that decreased
agitation can be obtained in person centred care
programs if we respect the client’s freedom of choice
regarding daily activities scheduling. This can lead to
decreased verbal agitation levels and also care workers
feeling less rushed and more tolerant to clients’
behaviours.
Improved self-esteem. Research indicates that
when people with dementia are being provided
with the opportunity of expressing themselves and
their needs, they will maintain a positive sense of
self. This can significantly reduce their feelings of
grief, anxiety, anger and feeling like a burden to
others.
Better sleep patterns. Respecting past interests
and current capabilities can improve sleep during
the night and daytime napping, as shown in
person centred care research programs.
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Gather relevant information about the person’s past,
likes, dislikes, and incorporate these into the care
giving.
Facilitate reminiscence with appropriate stimuli.
Take into consideration and acknowledge the
importance of the individual’s own interpretation of
their subjective reality.
Be ensured that no task or aspect of care is placed
higher than the subjective experience of the
individual.
Make all routines and activities flexible for the
person with dementia, that they can be easily
adapted according to individual’s wishes
Understanding the reasons behind
challenging behaviour in the elderly and
how to better cope, manage and care for
these behaviours
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In groups come up with a definition
of challenging behaviour
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“severely challenging behaviour refers to behaviour
of such intensity, frequency or duration that the
physical safety of the person or others is likely to be
placed in serious jeopardy, or behaviour which is
likely to seriously limit or delay access to and use of
ordinary community facilities.”
or
Difficult or problematic behaviour, the frequency
and intensity of these behaviours can vary greatly
with each individual.
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Widely accepted that most challenging behaviour
in dementia is an attempt at communicating
‘unmet needs’
Kitwood (1997) – “…well being will only be
attained when we address meaningfully the needs
of those with dementia…”
Stokes (2001) – “ we must attend to the
psychological needs of people with dementia if we
want to improve their well being”
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When a person has dementia one or more
areas of the brain are damaged with the
areas of damage different for each person.
THEY ARE STILL INDIVIDUALS
The person cannot help their behaviour
resulting from this brain damage.
People with dementia do not have the ability
to manipulate or use their behaviour
purposefully due to this damage
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The Behavioural and Psychological Symptoms of Dementia (BPSD)
are defined by the International Psycho geriatric Association
(IPA) as:
Behaviour symptoms include:
1:aggression, screaming, physical
2:agitation, restlessness,
3:Purposeful Walking
4:Culturally inappropriate behaviours, sexual disinhibition,
hoarding, cursing & shadowing.
Psychological symptoms include:
Anxiety, depressed mood, hallucinations & delusions
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Defensive behaviour – reaction to a perceived threat or
invasion of personal space
INTIMATE CARE CAN BE A FRIGHTENING EXPERIENCE
Reality Confrontation – exposing a confused person to
the upsetting reality that they are unwell and in hospital can distress
them, explaining that a loved one has passed away will just make them
relive the painful memory over again
Alarm – abrupt or sudden approaches to a person who is poorly
sighted/hard of hearing as well as confused, especially if from behind
or involving unexpected physical contact.
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Goal Frustration – staff attempting to restrict or control the
wishes and choices of the person. Giving instructions to STOP IT or act
differently may provoke an aggressive response
Psychosis – aggression may be linked to delusions – fixed false
beliefs which cannot be reasoned with e.g.) that the neighbours are
trying to kill them or poison them:
However it is important to remember that
delusions may also be misperceptions of their
environment or the situation in hand…. which can
lead to an aggressive incident
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AGITATION can be further defined:
Aggressive behaviour – Physical and verbal
Physical non – aggressive behaviour – pacing,
restlessness and walking with purpose
Verbal agitated behaviour – screaming and repeated
requests for attention
(Cohen – Mansfield & Billig 1986)
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can be further categorised into:
Exit seeking behaviour – repeatedly attempting to leave
the home
Modellers – shadowing or following other patients or staff
members
Self stimulators – these patients are bored or under
stimulated and may pace or walk around the home or unit
Akathisiacs – these patients are restless as a side effect of
certain medications
(Lawlor 1995)
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The behaviour should not just be considered as
confusion or agitation
Behaviour is usually a form of communication and
often represents an unmet need
Care givers cannot change the behaviour of the
person with dementia, however, they can change their
own behaviour and the working environment
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PHYSICAL
ENVIRONMENTAL
COMMUNICATION
PSYCHOLOGICAL
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Physical
medically unwell (especially delirium)
impaired vision / hearing
medication effects
fatigue
pain
constipation
Note: due to communication difficulties
acute health issues can be difficult to
identify
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Environmental
New/change in environment
Over/under stimulating
Lack of orientation cues
Lighting - dim/glare
Too restrictive - no place to walk, restraint
Temperature - too hot/cold
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Communication difficulties
Client
is unable to communicate needs
has communication problem (e.g.; due to
CVA)
has sensory deficit (hearing, sight)
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Communication difficulties
Communication is too complicated
Communication is too confronting
Lack of communication - not explaining things
properly to the person
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7%
38%
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55%
Body Language
Tone of voice
Words
Remember, people with dementia will reflect the mood
behaviour of others.
When caring for a person with dementia who is having
difficulty communicating, remember they will pick up
on negative body language such as sighs & raised
eyebrows.
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PSYCHOLOGICAL:
We all need to feel psychologically safe.
People with dementia feel they are in a world devoid of
familiarity or reassurance = feeling unsafe, uncertain,
frightened.
FEAR and FRUSTRATION is one of the main causes of
BPSD; derived from not knowing where they are,
why they are there, not recognising faces around
them = distress and wanting to go home
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PSYCHOLOGICAL:
To be engaged in occupation and have
stimulation is fundamental to psychological
well being.
Over – stimulation - can be typical in the acute
care setting.
Under stimulation – INACTIVITY.. The usual
activity in hospital is doing nothing or sleeping, yet
when they try to do something WE STOP THEM.
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PSYCHOLOGICAL:
Social and human contact:
Social contact is crucial to well being and has a protective
effect against psychological distress, BUT isolation can be
the norm for people with dementia!
Isolation can lead to them calling out or follow others
around them
Eye contact, a smile, a hand held, sitting with the person
can often help to meet this need
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Behaviour that is misunderstood and
managed inappropriately may escalate.
Think A B C
A = Activating Event (what was the trigger)
B = Behaviour (what behaviour resulted)
C = Consequence What was the consequence
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Scenario 1
Joe is 75 and suffers from Behavioural and
Psychological Symptoms of Dementia. His
aimless wandering is perceived as
intrusiveness. When confronted he becomes
aggressive.
A= Activating event - Joe wanders into co-patients
room. Co-patient orders Joe out.
E= Escalation Joes aggression
escalates from verbal
to physical.
B= Behaviour - Joe responds with
verbal aggression.
C= Consequence Joe is removed from the room in a firm and
decisive manner. Joe becomes physically aggressive to staff.
C then leads to A. staff intervention becomes the
activating event, which escalates the aggressive
behaviour (B), leading to restraint (C). Restraint
continues
to escalate the behaviour and so on.
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Scenario 2
Joe is 75 and suffers from Behavioural and
Psychological Symptoms of Dementia. His
aimless wandering is perceived as
intrusiveness. When confronted he becomes
aggressive.
A= Activating event - Joe wanders into co-patients
room. Co-patient orders Joe out.
D= De-escalate & Debrief - Joes
aggression de-escalates & staff &
others undergo debriefing.
B= Behaviour - Joe responds with verbal
aggression.
C= Consequence - staff assess the situation and talk to Joe in a warm and
friendly manner that is respectful and maintains dignity. Staff use
communication techniques aimed at diffusing the aggressive situation.
By not confronting Joe in his anger & by
using appropriate communication
techniques, the (C) moves to (D) rather than
(A), allowing staff to distract him with an
activity rather than an (A) activating event.
The circle is broken.
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Don’t be confrontational
Don’t show fear, alarm or anxiety, as this may encourage the
agitation/aggression by demonstrating that it is not they who
are unable to cope, but you as well
Don’t try to lead the person away or initiate any other form of
physical contact, such actions can be easily misunderstood
Don’t corner them as this will heighten feelings of threat and
alarm
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Don’t attempt to approach from behind
Don’t crowd them by calling for assistance
Don’t blame tease or ridicule
Don’t attempt to use restraint unless absolutely necessary
Don’t raise your voice
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Stay calm, this will demonstrate that you are in control.
Respect their personal space – this also helps to reduce
threat and enables staff to maintain a safe distance
Stand at an angle of 45 degrees
Use tone of voice to convey reassurance
Acknowledge how they are feeling – try to identify what
the problem is
Listen to what they actually say – be accepting not rejecting
Do not disagree with what they believe to be true to them
Seek points of similarity rather then difference
Use multi – step re direction:
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1.
2.
3.
4.
Validate the apparent emotional state of the person. E.g.: “You
look worried/concerned/upset” This may help to establish a
rapport.
Next the carer should join in with the persons behaviour
where possible. e.g.: “You’re looking for something/someone?
I’m trying to find something too, lets look together”
Once this common goal is established distraction can be
easier. e.g.: “this is thirsty work, should we get a cup of tea?”
Finally redirecting the person away from their original goal
has been established. e.g.: “lets sit down and have that cup of
tea?”
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REMEMBER: BEHAVIOUR
IS COMMUNICATING
Enter their world: The key to solving confusion is to help people
with dementia feel safe and listened to, and find something
familiar for them to anchor to.
Reassure and acknowledge what they are expressing – even if
it is about their past. Help them to name what they are feeling
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Validate their feelings - when you find out what is
confusing from their point of view
Reminisce – switch them from asking about people from
their past to reminiscing about them instead.
Anchor them - direct them to something familiar: a
routine, a song, a touch, a favourite activity.
If over stimulated – simplify the situation by eliminating
distractions and slowing down the pace of the
environment.
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You know what makes me feel safe, secure, and happy? A smile.
Did you ever conside this? When you get tense and uptight it
makes me feel tense and uptight.
Instead of getting all bent out of shape when I do something that
seems perfectly normal to me, and perfectly nutty to you, why
not just smile at me? It will take the edge off the situation all
the way around.
Please try to understand and remember it is my short term
memory, my right now memory, that is gone -- don't talk so
fast, or use so many words.
You know what I am going to say if you go off into long winded
explanations on why we should do something? I am going to
say No, because I can never be certain if you are asking me to do
something I like, or drink a bottle of castor oil. So I'll just
say No to be safe.
Slow down. And don't sneak up on me and start talking. Did I tell
you I like smiles?
Make sure you have my attention before you start blabbering
away. What is going to happen if you start blabbering away and you
don't have my attention, or confuse me? I am going to say No - count on
it.
My attention span and ability to pay attention are not as good as they
once were, please make eye contact with me before you start
talking. A nicesmile always gets my attention. Did I mention that
before?
Sometimes you talk to me like I am a child or an idiot. How would
you like it if I did that to you? Go to your room and think about this.
Don't come back and tell me you are sorry, I won't know what you are
talking about. Just stop doing it and we will get along very well, and
probably better than you think.
You talk too much -- instead try taking my hand and leading the
way. I need a guide not a person to nag me all the time.
The person with dementia cannot always perceive our “reality” due to
the damaged areas of the brain
What the person remembers from the past has largely become his
present
Things from the past are familiar and comforting to discuss, remember
and do – connecting with the past is a way of reassuring safety and
familiarity in a confusing world
It is important to respect the persons memory without correcting – ie
believing a parent is still alive..correcting can re – traumatize the
person by reminding them of a past traumatic event. The correction
will probably be forgotten in a few moments and so makes it a futile
exercise for both caregiver and the person
Confusion can also result from forgetting steps in doing a task, feeling
overwhelmed by the number of things going on in the environment, or
simple inability to recognize anything as familiar.
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Characterise the behaviour precisely with special attention to the
circumstances under which it occurs. Was it gradual or sudden.
If it appears inappropriate to us, consider whether the patient has an
underlying goal or if they are misperceiving their environment or the
situation
Review the patients past psychiatric history, social history and
premorbid personality.
Review the medication list
Be vigilant of the ongoing progression of the patients dementia and the
potential change in symptoms
Examine the patient with attention to changes in mental status from
baseline. Look for signs of painful/uncomfortable physical conditions
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Assessments :
Need
Risk
Capacity
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