Baber MalikProfessor Annalena VenneriProfessor Markus Reuber

Accessible and acceptable care and support

Understanding Dementia

Age is the strongest risk factorSouth 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.

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

Context: Dementia Strategy (2009)

I have the right to a diagnosis

I have the right to access a

range of treatment, care

and support

I have the right to end of life

care that respects my

wishes

I have the right to have carers who are well

supported and educated about

dementia

I have the right to be regarded

as a unique individual and to be treated with

dignity and respect

Improving awareness and understanding

Good quality early diagnosis and intervention for all

Is there a lack of access to care and support in the South Asian community?

…If yes, why?

1. Language barriers 2. Poor self-navigation through

the health care system3. Are the health care systems

impractical and over-complicated

Clinical pathway: Dementia diagnosis

GP Consultation: Patient complains about memory related problems

Neurologist/Psychiatrist: MRI scan, possible diagnosis reached at this stage

Neuropsychologist: Extensive assessment – clinical history taking, memory, language, attention

Identify impact of demographic variables (age, gender, education, ethnicity) on test scores- facilitates more accurate interpretation

The purpose of the PhD was to identify cultural differences that may effect performance on cognitive tests and to modify assessment in order to aid a better clinical diagnosis of dementia for the Pakistani community.

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

What are standardised tests?

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

Cultural diversity and assessment of neurodegenerative disorders

What is the problem?

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 should standardised tests be preferred?

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

Why address multicultural issues?

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)

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. Semantic2. Episodic

B. Early adulthood (17-39 yrs)1. Semantic2. Episodic

C. Late adulthood (40-55 yrs)1. Semantic2. Episodic

D. Recent (last 5 yrs) 1. Semantic2. Episodic

Methodology: Autobiographical tests

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

1960 1970 1980 1990 20000

10

20

30

40

50

60

70

80

90

white British

Pakistani

Decades

To

tal e

pis

od

ic s

core

* * *

1960 1970 1980 1990 20000

5

10

15

20

25

British

Pakistani

Fre

qu

ency

of

'I'

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).

Results: Autobiographical Memory

Fewer details expressed in the Pakistani group from the 80’s onwards

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 Total Male Female Age Education

21-30 20 10 10 24.4 (1.93) 13.9 (3.16)

31-40 20 10 10 34 (1.97) 12.7 (2.96)

41-50 20 10 10 42.65 (3.73) 12.4 (2.66)

51-60 20 10 10 54.85 (1.81) 9.18 (1.94)

61-70 20 10 10 65.05 (2.42) 8.2 (3.58)

71-80 20 10 10 75.40 (2.70) 4.67 (1.97)

80+ 3 2 1 82.33 (1.53) 4 (0.00)

Mini-Mental State Examination (Folstein et al. 1975) 10. Copying ہیں سکتے کر نقل کی ڈرائنگ اس آاپ

Animals/جانور 

 

Semantic FluencyStroop Task

Confrontation Naming

Mini-Mental State Examination

Method: Materials

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.

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 cut-offs: 23.33, which is similar to the currently used British cut-off

4. Validate adjusted scores

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

Results: The Urdu MMSE

Capitani and Laiacona (1997)

Results: Cognitive Assessment

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.

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 Education, Age

 Letter Fluency Education

Digit Span Forward/Backward Age, Education

Stroop Worse Time Age, Education

Short Cognitive Evaluation Battery Age, Education

Digit Cancellation Education, Age, Acculturation

Visuoconstructive Apraxia Test Education, Age

Logical Memory Education, Age, Acculturation

Education – Strongest predictor

Followed by Age and then Acculturation

Neuropsychologist: Extensive assessment – clinical history taking, memory, language, attention

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.

Improvement in assessing dementia: Accessibility

شکریہThank You

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