Dementia and BME communities. Dr Mary Tilki Irish in Britain

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Nathan Rafe Pierce
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1 Dementia and BME communities Dr Mary Tilki Irish in Britain

2 Dementia and BME communities Growing issue but limited evidence Similar problems to general population BME populations ageing, some old now Some groups-high risk (early dementia) Lack knowledge about dementia Uninformed about help available Seek help much later often in crisis Reforms- opportunity to meet legal duties, address inequalities, cost-efficiency, outcomes

3 Barriers to access Personal and family level Attribution to ageing, physical ill-health, retirement, being difficult, family neglect Person/ family unaware or in denial of symptoms Old age, dementia new, no models of old age Often multiple illnesses, focus on physical Belief that if seeing doctors, problems picked up Belief that nothing could be done to help Family fear upsetting or not respecting person Sometimes internal family tension

4 Barriers to access : BME community level Lack of knowledge about dementia Lack of targeted information for BME groups Lack of information re services for BME groups Family expect /expected to care Stigma /criticism if family uses external help Some cultural /religious beliefs Fear of residential care ( abandonment ) Suspicion, past negative experiences, unwilling to engage with insensitive services

5 Barriers to access : Planning, Commissioning level Lack knowledge re BME communities View BME groups non-white, younger, low numbers Not using BME 3 rd sector to consult/ engage with Not using evidence from BME 3 rd sector Buying what is on offer not what is needed Reliance on mainstream third sector Not aware of, utilising expertise in BME 3 rd sector Unequal tendering processes for small /BME VCOs

6 Barriers to access : service level Ethnocentric services - door open to all Lack staff from relevant cultures Language, religious, dietary, needs unmet Gender differences not catered for Not recognising diversity within cultures Inappropriate activities/therapies Diagnosis complex (multi-pathology) Inappropriate diagnostic tools

7 Addressing barriers :Working with BME 3 rd sector Recognise own limits /deficits, assets available Recognise skills, expertise reach of BME 3 rd sector Outreach to community via BME 3 rd sector Consult early, embed BME issues from the start Don t expect free service (volunteers have costs!) Invest in commissioning/funding/partnerships Be prepared to work differently to suit customers Be prepared to learn and give credit where due

8 Culturally sensitive dementia care : some considerations Encourage view of dementia as a medical condition (Cost) Effectiveness of care-worker continuity (Cost) Effectiveness culture matched care-workers Transformative dementia training Transformative cultural sensitivity training Appropriate memory/reminiscence activities using community/faith groups Culturally appropriate support for family carers Support BME 3 rd sector to develop new services

9 Informed by : APPG on Dementia (2013) Dementia does not discriminate: the experiences of Black, Asian and Minority Ethnic communities. Johl et al (2014) What do we know about the attitudes, experiences and needs of Black and minority ethnic carers of people with dementia in the UK. Moriarty et al (2011) BME people with dementia and their access to support and services. London. SCIE Mukadam et al (2011) Why do ethnic elders present later to UK dementia Services. Intl Psychogeriatrics 23 ; Mukadam et al (2011) A systematic review of ethnicity and pathways to care in dementia. Intl Jnl Geriatric Psychiatry 26 ; Salway et al (2013) High quality healthcare commissioning: why race equality must be at its health. Better Health Briefing-Race Equality Foundation Truswell D, (2013)Black and Asian Minority ethnic communities and dementia where are we now? Race Equality Foundation Tilki M, Mulligan E, Pratt E, Halley E, Taylor E, (2011) Older Irish people with dementia in England. Advances in Mental Health. 9, (3),

Dementia and equality

Dementia and equality The purpose of this paper is to give an overview of equality issues and dementia. The focus is evidence of effective interventions to raise awareness of dementia among different population