Transcript Education - Nishkam Centre

Accessible and acceptable care and support
Baber Malik
Professor Annalena Venneri
Professor Markus Reuber
Understanding Dementia
What is Dementia?
Dementia is an umbrella term for progressive disorder of cognition
Dementia is characterised by a decline of information processing abilities
accompanied by changes in personality and behaviour
When translated into several different South Asian languages, it can sometimes
translate to words such as madness or crazy
Age is the strongest risk factor
South Asians are the largest BME
group and the least studied when it
comes to mental health research.
They are considered to be at an age
now where they are most at risk for
dementia.
Context: Dementia Strategy (2009)
Improving awareness and
understanding
I have the right
to a diagnosis
Good quality early diagnosis and
intervention for all
I have the right
to be regarded
as a unique
individual and to
be treated with
dignity and
respect
I have the right
to access a
range of
treatment, care
and support
Is there a lack of access to care
and support in the South Asian
community?
…If yes, why?
I have the right
to have carers
who are well
supported and
educated about
dementia
I have the right
to end of life
care that
respects my
wishes
1. Language barriers
2. Poor self-navigation through
the health care system
3. Are the health care systems
impractical and overcomplicated
Clinical pathway: Dementia diagnosis
Identify impact of demographic
GP Consultation: Patient complains
about
memory
variables
(age,
gender, education,
related problems
ethnicity) on test scores- facilitates
more accurate interpretation
Neurologist/Psychiatrist: MRI scan, possible
diagnosis reached at this stage
The purpose of the PhD was to identify cultural differences that
Neuropsychologist:
Extensive assessment –
may effect performance on cognitive tests and to modify
clinical
history
taking,
memory,
language,
attention
assessment
in order
to aid
a better clinical
diagnosis
of
dementia for the Pakistani community.
What are standardised tests?
Standardised tests are those for which normative values are available
from a representative sample of normal individuals
Ideally this sample should come from the same sociocultural background
as the patient
The availability of normative values is a problematic issue in
neuropsychology:
Most neuropsychological tests are not standardised on large cross-cultural
samples
Cultural diversity and assessment of neurodegenerative disorders
What is the problem?
Diagnosis is difficult especially given the increasing number of diverse
populations
Cross-cultural research is rapidly gaining prominence as a means of enabling
cross country comparisons and in response to increasing ethnic diversity
Great variability confronting testing as many demographic variables have a
differential impact on test scores
Validity critical to accurate assessment and diagnosis depends on use of tests
in populations on which they have been normed
Why should standardised tests be preferred?
Performance on psychometric tests is affected by several variables, e.g.
• sex
• age
• education
• sociocultural background
If the effect of these variables are not taken into account, there is a high risk of
making interpretative errors
It increases the risk of false positives (i.e. considering as pathological a
performance which is within normal limits)
Why address multicultural issues?
At least 3 reasons:
1. Ethical
Research should be representative
2. Inform Theory
Add to explanation of behaviour and function
3. Inform Clinical Practice
Lead to more valid and accurate assessment, diagnosis and treatment
Three solutions to culture free assessment
1. Novel test construction
Creation of new tests specifically designed for use with cultural groups
that take into consideration item selection and analysis, normative
studies, reliability and validity analyses
2. Modification of existing tests
Tests are translated and adapted for different linguistic and socio-cultural
groups
3. Development of norms
Taking into consideration age and education for different ethnic groups
Study 1: Autobiographical Memory (ABM)
What is Autobiographical Memory?
Personal experiences and events (includes semantic and episodic
elements) - represents who we are today based on who we were
in the past and what we want to become in the future
‘SELF’ representations: it is often termed as ‘mental time travel’,
(Tulving, 2002)
HOWEVER, ‘SELF’ representations differ:
General difference between Independent vs. Interdependent
cultures
Why is it important?
Autobiographical memory is affected early in patients with
Alzheimer’s Disease and Amnestic Mild Cognitive Impairment and
it also forms the basis to clinical interviews, person-centred care
pathways, making it a good research starting point
(Wang, 2001;Wang & Brockmeier, 2002; Markus & Kitayama, 1991)
Methodology: Autobiographical tests
There are several ABM tests used in practice, however, they are based on
western norms.
Ivanoiu et al., 2006 ABM questionnaire
A. Childhood (6-16 yrs)
1. Semantic
2. Episodic
B. Early adulthood (17-39 yrs)
1. Semantic
2. Episodic
C. Late adulthood (40-55 yrs)
1. Semantic
2. Episodic
D. Recent (last 5 yrs)
1. Semantic
2. Episodic
Methodology: Novel ABM test
Total number: 84 (42 British, 42 Pakistani; 42F,42M)
Mean
Pakistani
British
P value
Age
65.2 (3.8)
65 (5.1)
NS
Years of Education
7.07 (2.08)
14.92 (4.04)
<0.001
Results: Autobiographical Memory
Fewer details expressed in the Pakistani group from the 80’s onwards
25
90
*
Frequency of 'I'
20
15
10
Total episodic score
80
*
*
70
60
50
40
white British
British
30
Pakistani
Pakistani
20
10
5
0
1960
1970
1980
Decades
1990
2000
0
1960
1970
1980
1990
2000
Less use of ‘I’ in the Pakistani group and more use of ‘we’ when recalling their memories,
supporting other research to suggest independent vs. interdependent differences (Wang et
al., 2008).
Study 2: Cognitive Assessment
We aimed to collect normative data on various tests of language,
memory and attention in order to be able to provide a sufficient
Neuropsychological assessment for a Pakistani patient.
They were translated and modified and administered in Urdu/Punjabi.
In total we collected data on 123 healthy participants
Age Group
21-30
31-40
41-50
51-60
61-70
71-80
80+
Total
20
20
20
20
20
20
3
Male Female
10
10
10
10
10
10
10
10
10
10
10
10
2
1
Age
24.4 (1.93)
34 (1.97)
42.65 (3.73)
54.85 (1.81)
65.05 (2.42)
75.40 (2.70)
82.33 (1.53)
Education
13.9 (3.16)
12.7 (2.96)
12.4 (2.66)
9.18 (1.94)
8.2 (3.58)
4.67 (1.97)
4 (0.00)
Method: Materials
Mini-Mental State Examination
Mini-Mental State Examination (Folstein et al. 1975)
10. Copying
‫آپ اس ڈرائنگ کی نقل کر سکتے ہیں‬
Stroop Task
Confrontation Naming
Semantic Fluency
Animals/‫جانور‬
Method: Demographic variables
Age and education are reported in literature as strong predictors on
performance of cognitive assessments.
In order to see what effects of ethnicity might have, we used an
acculturation score as a measure which would show us if more
acculturated people may perform better or worse on cognitive tests.
Results: The Urdu MMSE
1. Collect normative data: based
on 123 healthy participants
2. Derive formula to adjust scores
based on significant predictors:
Age and Education influenced
performance on the Urdu MMSE
3. Calculate population based cutoffs: 23.33, which is similar to the
currently used British cut-off
Adjusted MMSE score
= [Raw score - ((age - 50.195)*(-0.27)) ((education - 9.553) *(0.370))]
75 year old Pakistani male
with 4 years of education
MMSE Raw score
= 18
= impaired
MMSE Adj score
= 27.5
= normal
4. Validate adjusted scores
Capitani and Laiacona (1997)
Results: Cognitive Assessment
Neuropsychological Test
Predictors
UMMSE
Age, Education
RMMSE
Age, Education
Confrontation Naming
Education
Rey’s Complex Figure Copy
Education, Age, Acculturation
Rey’s Complex Figure Delay
Education, Age, Acculturation
Category Fluency
Letter Fluency
Education, Age
Education
Digit Span Forward/Backward
Age, Education
Stroop Worse Time
Age, Education
Short Cognitive Evaluation Battery
Age, Education
Digit Cancellation
Visuoconstructive Apraxia Test
Logical Memory
Education, Age, Acculturation
Education, Age
Education, Age, Acculturation
Education – Strongest
predictor
Followed by Age and
then Acculturation
The Pakistani cut-off
scores are much lower
than the British cut off
scores which are currently
used as norms in the UK
for all individuals who are
screened via
Neuropsychological
assessment.
Improvement in assessing dementia: Accessibility
Clinical Interview: Autobiographical memory differences allow us to
better understand cultural differences in recall. So fewer memories
recalled do not necessarily warrant any major concerns but in fact
the over general approach to their recall at this stage will be
considered a normal approach to answering questions about their
memories.
Clinical Assessment: The lower cut off scores obtained will also be
of use when assessing the cognitive status of a Pakistani patient.
Prior to these cut off scores, many patients would be considered as
severely demented. However with closer examination and correction
of scores we are able to see that this is not the case.
Neuropsychologist: Extensive assessment – clinical history
taking, memory, language, attention
Thank You
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