Accessing Dementia Services by BAME Communities The Barriers Janice Le Tellier Operations Manager

Increasing Numbers Dementia UK Report ,392 Updated estimates Runnymede 2011 – 25, , ,000

Increasing Numbers BAME population traditionally had a younger demographic than the majority white population census – growing proportion of BAME is now aged over 65 with a particular growth in 75+ age group Presents challenges for commissioners of services

Health Issues Smoking is higher amongst Black Caribbean and Bangladeshi men, and high use of chewing tobacco amongst South Asian communities People from South Asian population have the highest risk of developing coronary heart disease Prevalence of type 2 diabetes is 3-5 times higher in the black African-Caribbean population than the white European population in the UK

Barriers to accessing services Awareness and stigma Beliefs Language Barriers

Barriers to accessing services Close Knit Communities and their perspective on caring for families Lack of Appropriate Services Issues for Health Practitioners

Awareness and Stigma Early signs are just perceived as normal ageing and people may not realise it is a progressive illness There are strong associations with “getting old” or mental illness There is no term for dementia in South Asian languages Amongst the Chinese, the term to describe dementia is very derogatory

Awareness and Stigma This disease never existed in our community. Nobody would think this is a health problem. People in my community would say the person has gone mad or lost his mind” (Pakistani carer) “I often hear in my community that somebody has done something to her like cast an evil spell” (Caribbean service provider )

Beliefs There can be a belief that dementia is caused by:- Spirit possession It is a punishment It is “just in the mind” Having dementia in the family can affect marriage prospects

Beliefs There is an expression:- “Once a man twice a child” This originates in the Caribbean There is a counterpart saying in South Asia

Language Barriers Older people are less likely to speak English The ability to speak and/or learn a second language diminishes Reverting to mother tongue Problems with translating Lack of appropriate terminology

Close Knit Communities and the perspective on caring for families Fear and embarrassment Damaged pride if you have to ask for help Difficulty in talking about it in the community Concealment of symptoms which often means a late presentation

Close Knit Communities and the perspective on caring for families It is the family’s responsibility to care It is a religious duty Community traditions or expectations The result is sometimes that family members’ health suffers Families need support too!

Close Knit Communities and the perspective on caring for families The experience of dementia might be new as many people who migrated to the UK did not grow up around older people

Close Knit Communities and the perspective on caring for families Many families from all communities would like to care for elderly family members Black Caribbean and Irish communities - acceptance that this is not always possible Indian, Chinese and Pakistani communities - strong community pressure for children to look after parents

Close Knit Communities and the perspective on caring for families “I do feel the pressure. If I said to my father, ‘I want you to go into a home,’ he would be very upset and I would be made to feel guilty. And the Chinese community would think I am heartless. They would say you are neglecting your parents” (Chinese carer)

Access to services Families and individuals may not seek support Desire to care for the person themselves Community pressure No appropriate services Experience of racism and hostility

Lack of culturally sensitive services Support available does not always address needs relating to faith or culture “We just sat there on our own all day. Other people were dancing and singing. We had a cup of tea and in the evening they dropped us home. There was no one there we could talk to” (Indian carer)

Many of the challenges faced are similar to those faced by the white British population Some of the causes are different and require a different response The impact of life history - we all have our unique life history that makes us who we are today – where we are born, what we eat, the language we speak, work, our family life – supporting this in someone with dementia Life history of people with dementia from BAME groups

Everyone is Unique

Late presentations – late diagnosis Are standard diagnostic tools appropriate Lack of cultural awareness and religious beliefs Lack of understanding of health expectations Issues for Health Practitioners

Get accurate data Share information and good practice Train staff in cultural issues Get to know your community Undertake intergenerational work Some Possible Solutions

Be proactive and creative Try a different approach - “worries about getting older” Talk about associated conditions such as hypertension and link it to dementia Use other mediums – cooking, music, reminiscence Some Possible Solutions

Opportunities for providing support Large ethnic minority voluntary sector providing health and welfare support Benefits of linking ethnic minority community groups and local specialist dementia services Specialist ethnic minority dementia services Making small changes to a mainstream service to make services appropriate

Use outreach and support Recognise there are communities within communities Try taster sessions Use community venues Make some services specific – Wolverhampton cafes Engage with the Community

Opportunities for providing support My wife comes alive when she goes to the Asian day centre. They play Hindi songs from old films. She meets other women and talks to them in Punjabi and they talk about their lives in India. She is a different person there” Indian carer) “

Work with volunteers and community representatives Dementia Friends Health Champions Religious figures – AS Faith Healing Training for Imans who then delivered information in sermons Engage with the Community

BAME communities also need to take some ownership of the issues that affect them:- Get involved in consultations Challenge the hard to reach label Attend events such as this one Getting involved

Production of local DVD Delivering services in a range of locations Specific services – - Information programmes for South Asian Community - Asian Singing for the Brain What is the Alzheimer’s Society doing?

Connecting Communities Project focussing on raising awareness of dementia within BME communities across London Dementia Guide in various languages Fact sheets in various languages “Worried about your Memory” in other languages What is the Alzheimer’s Society doing?

‘I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.’ Maya Angelou 2005

‘When you’ve met one person with Alzheimer’s Disease, you’ve met one person with Alzheimer’s Disease.’ Laurenhue 2001

Knowledge is power with respect to diagnosis, giving those affected and their families an understanding of what is happening and the ability to make choices themselves (National Dementia Strategy, 2009)

Chinese proverb: “Tell me and I’ll forget; Show me and I may remember, Involve me and I’ll understand.” Inclusion