Dementia does not
discriminate: the
experiences of black, Asian
and minority ethnic
communities
Alli Anthony, Alzheimer’s
Society
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alzheimers.org.uk
All party parliamentary group on
dementia
• 70 MPs and Peers, since 2007
• 2013 inquiry the experiences of people with
dementia from black, Asian and minority ethnic
groups
•Diagnosed late and underrepresented in services
•Lots of activity in dementia but is it addressing
the needs of the whole UK population?
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alzheimers.org.uk
New data on increasing numbers
• Previous estimate 11,392 (Dementia UK)
• Updated estimate for the number of people with dementia from
black, Asian and minority ethnic groups in England and Wales
(Runnymede Trust and CPA)
2011: 25,000
2026: 50,000
2051: 172,000
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alzheimers.org.uk
Barriers to accessing services
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Language and the use of interpreters
Cultural views of ageing
Lack of awareness of dementia
Dementia services not being culturally diverse or not
being seen to be so
People may not see themselves as carers
Stigma and lack of confidentiality
Extended family dynamics
Short term funding
Life history of people with dementia
from BAME groups
• Many of the challenges faced are similar to
those face 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
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alzheimers.org.uk
Recognising diversity within
ethnic groups
• Risk of blanket response and important to recognise
immense diversity
• Always important to acknowledge and respond to the
differences within ethnic groups, and at an individual
level, ensure a person centred approach is taken.
• But the term BAME does focus attention on groups
that share a similar experience
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alzheimers.org.uk
Awareness and stigma
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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
“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)
“Chinese word for dementia is really bad. It’s like “crazy” or “100% docile” or
“nutty”. The term is used in an insulting way. It’s very negative”
(Chinese service provider)
“I often hear in my community that somebody has done something to her
like cast an evil spell” (Caribbean service provider)
“A lot of people say to me this doesn’t happen in the Caribbean.
It is only since we came to this country that you hear about such
mental problems”
(Caribbean service provider)
“If someone has dementia the family will become very isolated.
Only the very close family members will know about it. They will
hide it from other family members of friends” (Chinese service
provider)
“This is a time-bomb. We need to tell our communities that
dementia is nothing to be ashamed of. We need to develop the
right services and tell people about them” (South Asian service
provider)
Impact of low levels of awareness
and myths
Delays in getting a diagnosis and accessing services are
significant risks
“People will only take action when the conditions get
worse and they are in the deep end.” (Asian service
provider)
“If someone has dementia the family will become very
isolated. Only the very close family members will know
about it. They will hide it from other family members or
friends.”
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alzheimers.org.uk
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)
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alzheimers.org.uk
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
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alzheimers.org.uk
APPG Recommendations
• Government funded awareness programme
• Undertaking preventative work
• Ensure local areas are aware of the need to support
people with dementia from BAME groups in their
communities
• Sharing good practice in commissioning and support
• Improve access to high quality support (sharing
knowledge)
• Alzheimer’s Society programmes
• Improving staff knowledge and skills
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alzheimers.org.uk
Follow up
• Seeking meetings with organisations to whom
recommendations are directed
• We will be writing to directors of public health and
CCG chairs
• Working on how to involve Alzheimer’s Society
campaigners network
• How else can we turn the report into a reality?
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alzheimers.org.uk
Dementia can affect us all –
over to you!