Making a dementia diagnosis in areas of cultural diversity

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Elfrieda Greene
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1 Making a dementia diagnosis in areas of cultural diversity Dr. Norman Poole Consultant in Liaison Psychiatry Dept. of Psychological Medicine Royal London Hospital East London NHS Foundation Trust

2 The challenge Estimated 684, ,00 people in UK living with dementia Current estimates of 15,000 BME have dementia Windrush in 1948 Most >65 will have been born abroad By % of Black Caribbean and 21% of Asians will be over 65 y.o. C.f. 27% of WBr Population as a whole will be more diverse as BME people move from inner city to suburban and rural area Research briefing 35, SCIE, 2014

3 The challenge Higher rates of older males due to migration patterns Males typically poorer at accessing health services Population as a whole will be more diverse as BME people move from inner city to suburban and rural area?higher rates of Early Onset Dementia and Vascular Dementia in some ethnic groups BME patients present later to dementia services

4 The challenge Dementia does not discriminate, APPG, 2013

5 Tower Hamlets

6 Tower Hamlets

7 Tower Hamlets 47% population in TH BME 30% are Bangladeshi 3% Chinese 3% Black African (mainly Somali) 2% Indian, 1% Pakistani 36% are Muslim However, 2/3 of >65 are WBr

8 What is culture? Culture is an abstract concept that refers to learned, shared patterns of perceiving and adapting to the world which is reflected in the learned, shared beliefs, values, attitudes, and behaviours characteristic of a society or population. Fitzgerald, 1997 Culture provides normative standards of behaviour, regulating what a person ought and ought not do in a given situation. Cultural norms, values, and cultural frame, give meaning to and provide definitions of illnesses stemming from diseases such as Alzheimer. Dilworth-Anderson, 2002

9 Cultural barriers to diagnosis in TH Reduced awareness of problem Explanatory models emphasise memory loss in normal aging Two passages in Qur an state this Symptoms ascribed to Jinn 60% Bangladeshis in UK believe in Jinn possession Often thought to cause tiredness, forgetfulness and morbid fears Older people more likely than young second generation Bangladeshis to believe in Jinn Longstanding tension pirs vs. ulama also evident in TH Bangladeshis Dein, Transcult Psych, 2008

10 Barriers to diagnosis in BME groups Reduced awareness of problem Symptoms ascribed to stressor/ environment rather than located with the individual Lack of necessary words in S. Asian languages pagal Lack of knowledge i.e. that dementia can impact reasoning, personality and behaviour Limited perception of cognitive problems Paranoia, agitation, loss of independence much more commonly reported Stigma Cultural meaning of symptoms implies shame and so kept concealed from others Implies bad blood and limits marriage prospects

11 Barriers to diagnosis in BME groups Access to services Linguistic barriers Referral to DMC by GP (reported in Culture and Care in Dementia, Seabrooke & Milne, 2004) Structure of carer support (e.g. males responsible for decision making, females for hands-on provision of care.) 21% Ethnicity of > 65s 4% 1% 7% 1% 0% 65% White Asian or Asian British - Bangladeshi Asian (other than Bangladeshi) Black 2007/08 proportion of case load by ethnicity 4% 2% 18% 4% 7% 4% 62%

12 Barriers to diagnosis in BME groups Assessment Language issues Capacity & consent History Deference to family in reporting symptoms Doctor attributes Assessment seems tangential to needs Lack of familiarity with concept of cognitive functions Functional level poorly correlated with ability given up many ADLs Collateral history often not available from actual carer Physical examination often complicated by cultural/ language problems Prioritisation of blood tests and neuroimaging Neuropsychology

13 Barriers to diagnosis in BME groups Neuropsychological assessment Appropriateness of test content E.g. naming tasks, semantic fluency, memory items

14 Barriers to diagnosis in BME groups Neuropsychological assessment Appropriateness of test content E.g. naming tasks, semantic fluency, memory items Appropriateness of test construct E.g. Trails A & B Similarities

Barriers to diagnosis in BME groups Neuropsychological assessment Appropriateness of test content E.g. naming tasks, semantic fluency, memory items Appropriateness of test construct E.

15 Barriers to diagnosis in BME groups Neuropsychological assessment Appropriateness of test content E.g. naming tasks, semantic fluency, memory items Appropriateness of test construct E.g. Trails A & B Appropriateness of test norms Who is the reference group? Level of education Bilingual factors

16 Barriers to diagnosis in BME groups Difficulty employing neuropsychological assessment can be interpreted two ways: Weak view Cognitive functions are universal but tests need to be adapted to suit cultural variations Strong view Cognitive functions themselves betray cultural assumptions Mimics etic vs. emic debate in psychiatry Presupposes Kant s form & content: "Thoughts without content are empty, intuitions without concepts are blind."

17 Illustrative case history Mrs Begum, 71 y.o. Bangladeshi woman is brought to the clinic by her son. She looks to him during consent taking and prefers for him to answer questions about her condition. She agrees that memory and energy are lower since the death of her husband 12 months ago, which she attributes to Jinn, though the son does not. Son provides limited collateral information as he works long hours, his wife provides the bulk of the care. Patient dependent on her d-i-l for cooking, cleaning, shopping.

18 Illustrative case history They live 5 in a 2 b/r house and she asks if they can have an extra bedroom She refuses physical examination from the male doctor and seems unsure during neuropsychological testing, explaining that she hasn t been to school so doesn t know the answers to tests. Multiple vascular risk factors and CT head shows moderate burden of s.v.d.

19 Illustrative case history They live 5 in a 2 b/r house and she asks if they can have an extra bedroom She refuses physical examination from the male doctor and seems unsure during neuropsychological testing, explaining that she hasn t been to school so doesn t know the answers to tests. Multiple vascular risk factors and CT head shows moderate burden of s.v.d. Does she have dementia?

20 Illustrative case history There are 5 in a 2 b/r house and she asks if they can have an extra bedroom She refuses physical examination from the male doctor and seems unsure during neuropsychological testing, explaining that she hasn t been to school so doesn t know the answers to tests. Multiple vascular risk factors and CT head shows moderate burden of s.v.d. Does she have dementia? What type? And should she receive treatment?

21 The TH experience BME Steering group for dementia Meets every 2/12 Representatives from Bangladeshi, Chinese and Somali communities Alliance with Faith in Health Training afternoons in E. London Mosque of local imams Discussion on causes and meaning of symptoms

22 The TH experience Schools project Target children as means of educating mothers Appearances on BBC s Asian Network and local TV/ Radio Dementia café in local mosque meets every 2/52

23 The TH experience Qualitative interpretation rather than quantitative Use of culturally fair cognitive tests e.g. widely available non-verbal tests (Brixton test; Colour trails)

24 The TH experience Qualitative interpretation rather than quantitative Use of culturally fair cognitive tests e.g. widely available non-verbal tests (Brixton test; Colour trails) Adapt tests for application locally E.g. Sylheti test set Matthew Jones, UEL

25 Cultural competence Individual s and organisation s cultural competence ranges from cultural destructiveness to cultural proficiency Most organisations operate between cultural blindness cultural pre-competence (Cross, 2007) Apply concepts of health universally, measure outcomes against mores and values of dominant culture, etc., etc.

26 Cultural competence Individual s and organisation s cultural competence ranges from cultural destructiveness to cultural proficiency Most organisations operate between cultural blindness cultural pre-competence (Cross, 2007) Apply concepts of health universally, measure outcomes against mores and values of dominant culture, etc., etc. How does the APPG on Dementia fare? What is the effect of replacing traditional beliefs with biomedical explanations?

Conclusions Dementia in BME population will rise rapidly and every area will need to meet the need Difficulties with each step of process to diagnosis Identification of

27 Conclusions Dementia in BME population will rise rapidly and every area will need to meet the need Difficulties with each step of process to diagnosis Identification of problem Clinical history Neuropsychological evaluation Neuroimaging Difficulties can be tackled DMCs, like all services/ organisations, should improve cultural competence

THE FUTURE AGEING OF THE ETHNIC MINORITY POPULATION: ETHNICITY AND DEMENTIA: Jo Moriarty

THE FUTURE AGEING OF THE ETHNIC MINORITY POPULATION: ETHNICITY AND DEMENTIA: Jo Moriarty SUMMARY Why is this an important issue? Effect of changes in UK population Issues affecting people from minority