Download UCLP Dementia Training January 2013

Dementia Education
for Primary Care
Paul Russell, GP Clinical Lead Older
People Waltham Forest
Buz Loveday, Specialist Dementia
Trainer
What do GPs think about dementia?
NAO Improving dementia services in England – an interim report. 2010
Dementia: Rising Up The Public Agenda (Key Milestones)
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Pre 2007 – reports by National Audit Office,
etc. highlighting the need for focused work
on dementia
February, 2009 – National Dementia
Strategy published, jointly authored by
Professor Sube Banerjee
NHS Operating Framework 2012/13 –
Dementia included as an area requiring
particular attention (10 clear action points)
26th March, 2012 – Prime Minister David
Cameron announces “Challenge on
Dementia”, to deliver major improvements
in dementia care and research by 2015
Throughout 2012-13 – Numerous
policy/implementation developments –
Government’s Mandate to NCB, Outcomes
Framework 2013/14, CCG planning,
National CQUIN for Acute Trusts, DES for
primary care, etc
11th December, 2013 – G8 dementia
summit
“So my argument today is that
we’ve got to treat this like the
national crisis it is. We need an
all-out fight-back against this
disease…
“We did it with cancer in the 70s.
With HIV in the 80s and 90s…
Now we’ve got to do the same
with dementia.”
The cost of the dementia challenge
The Case For Diagnosis
World Alzheimer’s Report 2011
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Optimising current medical management
Relief gained from better understanding of symptoms
Maximising decision-making autonomy
Access to services
Risk reduction
Planning for the future
Improving clinical outcomes
Avoiding or reducing future costs
Diagnosis as a human right
The dementia diagnosis gap
Dementia Diagnosis Gap
(% people with dementia on GP
registers, compared with expected
prevalence)
Visual from the NHS Atlas of Variation, November, 2011 (based on
2009/10 data) – best to look at Dementia Prevalence Calculator
figures
London Average
47.1%
National Average
46%
Islington
70.8%
(Best in country)
Harrow
37.1%
(Worst in
London)
Dementia Prevalence Calculator 2013
IMPROVE PRACTICE INCOME!
Number of patients added to the register Income increase
10 patients
£1,180.50
20 patients
£2,361.00
50 patients
£5,902.51
…. And don’t necessarily have to hit all the points.
PRACTICE 1 – 10,000 patients
Low prevalence, high point achievement
PRACTICE 2 – 10,000 patients
High prevalence, less point achievement
Average £ per point = £227.02
Average £ per point = £227.02
Dementia National Prevalence = 0.5%
Dementia National Prevalence = 0.5%
Practice Prevalence = 0.3%
Practice Prevalence = 0.7%
Dementia point value drops to £136.21
Dementia point value increases to £317.83
Dementia points achieved = 26 (maximum) Dementia points achieved = 20
Total income for dementia = £3,541.46
Total income for dementia = £6,356.60
Dementia
A decline of cognitive ability and behaviour
primary and progressive
due to a structural or chemical brain disease
Not secondary to sensory deficits, physical
limitations, or psychiatric symptomatology.
to the point that customary social, professional
and recreational activities of daily living become
compromised.
Clinical Symptoms of Cognitive Decline
• Memory loss is often the most commonly
reported symptom:
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Forgetfulness
Repeats self in conversation
Asks the same questions over and over
Gets lost in familiar areas
Can’t seem to learn new information (routes, tasks,
how to use a new appliance or electronics)
Clinical Symptoms cont . . .
• Presenting symptoms can also consist of changes
in one or more of these areas:
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Attention
Language
Visuospatial abilities
Executive function
Personality/judgment/behavior
Impairments in Attention
• Starting jobs but not finishing them
• Absentmindedness
• Difficulty following a conversation
• Distractibility
• Losing train of thought
Impairments in Language
• Problems expressing one’s thoughts in
conversation (can’t find the right words)
• Consistently misusing words
• Trouble spelling and/or writing
• Difficulty understanding conversation
Impairments in Visuospatial Function
• Getting lost (even in one’s own home)
• Trouble completing household chores (using
knobs or dials)
• Difficulty getting dressed
• Trouble finding items in full view
• Misperceiving visual input
Impairments in Executive Function
• Disorganisation
• Poor planning
• Decreased multi-tasking
• Perseveration
• Decreased ability to think abstractly
Changes in Personality or Behaviour
Quantitative change in behaviour:
– Increase- disinhibition, impulsivity, poor selfregulation, socially inappropriate
– Decrease- flat affect, reduced initiative, lack of
concern, lack of interest in social activities
(often initially mistaken for depression)
– Behavior not typical of premorbid personality
“Typical” Cognitive Aging
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 Encoding of new memories
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 Working memory
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Slower to learn new tasks
May need more repetitions to learn new info
 Processing speed
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Slower to respond to novel situations
Mild Cognitive Impairment
• Objectively measured deficits in memory and/or
other thinking abilities
• Subjective memory complaint
• Normal ADLs
• Prevalence rates vary widely depending on age and
community vs clinic sample
** Conversion to dementia is significantly higher
in people with MCI
MCI
12 - 15% per year
Normal controls 1 - 2% per year
(Petersen et al., 1999, 2001)
Causes that Mimic Dementia
(*but are treatable)
Toxic/metabolic
Systemic illnesses
Other
Medications, B12 deficiency,
hypothyroidism
Infections, cardiovascular
disease, pulmonary
Depression, sleep apnea,
psychosocial stressors, drugs
*Treatment may improve, but not fully
reverse, symptoms
GP Role in Diagnosing Dementia
What will you hear in clinic?
DEMENTIA DES: Facilitating Timely Diagnosis
And Support For People With Dementia
• The GP practice undertakes to make an opportunistic offer of assessment
for dementia to ‘at-risk’ patients and, where agreed with the patient, to
provide that assessment.
• For the purposes of this enhanced service, ’at-risk’ patients are:
– Patients aged 60 and over with cardiovascular disease (CVD), stroke, peripheral
vascular disease or diabetes
– Patients aged 40 and over with Down’s syndrome
– Other patients aged 50 and over with learning disabilities
– Patients with long-term neurological conditions which have a known
neurodegenerative element, for example, Parkinson’s disease.
• These assessments will be in addition to other opportunistic investigations
carried out by the GP practice (for example, anyone presenting raising a
memory concern).
General Enquiry:
“Has the person been more forgetful in the last 12 months to the extent it has
affected their daily life”
Cognitive Assessment in Primary Care
DEM003
• Helpful to have an informant present
New diagnosis of dementia
• Comprehensive clinical assessment
with record of;
essential
• FBC
• Calcuim, Glu, Renal and
• Exclude causes that mimic dementia
Liver function
– Infection, Medication,
• Thyroid function tests
Hypothyroidism, Electrolyte
• B12 and Folate levels
imbalance, Anoxia, Depression,
(Recorded between 6
months before or after
Head Injury
entering on to the register)
• Perform a cognitive test*
– GP CPOG
* Dementia DES: Where there is concern over memory
– ATMS
administer a more specific test to detect if the patient’s
– 6CIT
cognitive and mental state is symptomatic of any signs of
dementia
6 item GPCOG
Pros:
- Takes 3 minutes
- Validated For
primary care
- Linguistically and
culturally
transferrable
Cons:
- Confusing weighting
and scoring
Abbreviated Mental Test Score
Pros:
- Simple to
perform and
score
Cons:
- Limited validity
data
- Culturally specific
- Takes 5 minutes
Diagnostic Challenges
Detecting (early) dementia can be difficult!
• Altered health seeking behaviour in patient
• Is this normal ageing? Is it change?
• Clinical presentations can be similar (i.e. Depression)
• Crude cognitive tests
In difficult cases….
• Perform thorough clinical assessment; History (with
informant), Examination, Cognitive test (Aware of the
limitations)
• Dementia is progressive – Reassess in 3-6 months
HOW WOULD YOU FEEL IF…..?
• You are asleep when suddenly you are woken up by a person
you have never seen before, who starts trying to pull you out
of bed.
• You overhear two people talking about you, saying that you
don’t understand anything and you are incapable of doing
anything for yourself.
• You’re far away from home in a country you’ve never visited
before and where you don’t speak the language. You become
separated from your friends and realise that you are
completely lost.
• You are feeling really angry and upset about something, but
everybody around you just keeps telling you that everything is
fine and you should cheer up.
• You are at work when you start to get a stomach ache.
Suddenly, without realising it’s going to happen, you defecate
in your clothes.
HOW DOES HE FEEL…..?
He is asleep when suddenly he is woken up by a person he
has never seen before, who starts trying to pull him out of
bed.
Photo from ‘Openings’ – John Killick and Carl Cordonnier
Environmental
- House of poor
design for wheelchair
- Only 2 wide doors
- No ramp at front door
- No stair-lift
Physical
- Visual impairment
- Arthritis in neck
and shoulders
Social
- Partner and family can’t
cope and expect him to
‘get on with it’
- Friends fuss over him
- Public treat him like a
child
Individual
- Has always dealt well
with life’s knocks
- Good sense of humour
- Has had to give up a
job which he loved
Environmental
Social
Person
with
Dementia
Physical
Individual
Symptoms or preventable difficulties?
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Repeats self in conversation
Asks the same questions over and over
Gets lost in familiar areas
Starting jobs but not finishing them
Difficulty following a conversation
Distractibility
Problems expressing one’s thoughts in conversation
Trouble completing household chores
Trouble finding items
Misperceiving visual input
Disorganisation
Decreased multi-tasking
Disinhibition
Flat affect
Reduced initiative
Behaviour not typical of premorbid personality
time
Tom Kitwood 1993
PARTNERSHIP
time
Dementia Annual Review
1. An appropriate physical and mental health
review for the patient
2. If applicable, the carer’s needs for
information commensurate with the stage of
the illness and his or her and the patient’s
health and social care needs
3. If applicable, the impact of caring on the
care-giver
4. Communication and co-ordination
arrangements with secondary care (if
applicable).
DEM002
The percentage
of patients
diagnosed with
dementia
whose care has
been reviewed
in a face-to-face
review in the
preceding 12
months
“…(Our) behaviour is often referred to as
‘challenging’, but is usually the only means left
for us to express our anxiety and emotion, and
the distress we are experiencing due to our
care environment”
Christine Bryden
Behaviour = Communication
Environmental
Social
Person
with
Dementia
Physical
Individual
Research has shown that
patients with dementia in
hospital were 50% less
likely to receive analgesia
than patients without
dementia
Morrison R, Siu AL. A comparison of pain and its
treatment in advanced dementia and cognitively
impaired patients with hip fracture.
J Pain Sympt Management 2000; 19:240-8
A recent study has shown that
‘pain was strongly and
consistently associated with
behavioural and psychological
symptoms of dementia,
particularly aggression and
anxiety’
UCL Behaviour and Pain in the Acute Hospital Project 2013
“Don’t push us into something, because we
can’t think or speak fast enough to let you know
whether we agree. Try to give us time to
respond – to let you know whether we really
want to do it. Being forced into things makes us
upset or aggressive, even fearful.”
Christine Bryden
Research has shown that
the average amount of
time that people with
dementia in care homes
spend interacting with
staff or other residents
(excluding care tasks) is 2
minutes in every 6 hours.
Alzheimer’s Society ‘Home from Home’ report 2007
Communication is essential…
• Life story work
• Music and dance
• Contact with animals
• Massage
• Empathic listening
“I want my mum”
“I have to go to work
now”
“I can’t stay here – I
have to collect my
children from school”
“I want to go home”
THE PROBLEMS WITH
TRUTH AND LIES
TELLING THE TRUTH
(when it’s not needed)
eg: “Your mum’s dead”
“I want my
mum”
LYING
eg: “Your mum’s just
popped out”
POSSIBLE RESULTS:
POSSIBLE RESULTS:
•Unnecessary distress
•False expectations
leading to distress and
further confusion
•Unmet needs
•Conflict between
person with dementia
and carers
•Mistrust
•Unmet needs
“I need
“I want my mum”
comfort”
“I need
“I have to go to work
something
now”
to do”
“I can’t stay here – I
have to collect my
children from school”
“I need to
“I want to go home”
feel safe”
“I need to
be needed”
UNDERSTANDING AND MEETING NEEDS
“I want my
mum”
Examples:
“What would your mum do if she was here?”
“You look upset, how can I help?”
“It sounds as if you’re having a difficult time…”
“I’m so sorry your mum’s not here – is there
something I can do for you?”
Possible results:
• The person feels cared about and understood
• The person feels supported in expressing their feelings and needs
• The person gains a sense of relief because their very real emotions have been
validated
• Carers gain important information about the person’s emotional and/or
practical needs and can then work towards meeting these needs
“Dementia robs the
person of their
identity”
George, who had always been a very smart man,
often took off his clothes and exposed himself, even
when there were visitors at his house. His wife was
very concerned and embarrassed, and felt that
George had completely lost his self respect.
Barry often shouted at people as they walked
down the corridor in his care home. No-one
could understand why. He often appeared
anxious and upset.
“Ask not what disease the person has, but rather
what person the disease has.”
William Osler