Number of people with dementia in minority ethnic groups could rise seven fold by 2051 and yet awareness and support is lacking
Estimated numbers of people with dementia in Black, Asian and Minority Ethnic (BAME) groups in England and Wales are far higher than previously thought yet their needs are often being overlooked.
This is according to a new report published today (Tuesday 2 July 2013). The All-Party Parliamentary Group on dementia’s inquiry ‘Dementia does not discriminate’ reports that there are nearly 25,000 people with dementia from BAME communities.
This number is set to increase seven-fold to over 170,000 by 2051. This is a significantly bigger leap than the two-fold increase expected amongst the rest of the population, as people who moved here between the 1950s and 1970s are reaching their 70s and 80s. Despite this increase, awareness of the condition in minority ethnic groups is low and current provision of appropriate support is lacking.
The APPG is now calling for Public Health England to raise awareness of dementia amongst minority ethnic groups by funding a pilot awareness campaign to inform communities about the condition whilst challenging existing stigma. ‘Dementia does not discriminate’ also urges commissioners to ensure appropriate dementia support services are provided in minority ethnic communities.
The APPG commissioned Ethnos – specialist in minority ethnic research – to interview carers, people with dementia and service providers to create new evidence which explores the experiences of people with dementia from BAME communities. ‘Dementia does not discriminate’ found that many did not receive a diagnosis of dementia, preventing them from having access to support and treatments that could help them live well with the condition. In addition to this, stigma surrounding the condition meant people with dementia and their families face social isolation, feeling unable to reach out for support. Amongst those who did seek help, there is generally felt to be a lack of culturally-sensitive dementia services. One Indian carer talked about their negative experience of visiting a local support service, feeling like they couldn’t relate to the activities and were unable to talk to people because of language barriers.
Gloria Bailey who runs the Make a Difference African Caribbean support group in Streatham said:
‘Having cared for my own husband when he had dementia, I understand the need to support both the person with dementia as well as the carer. In my group, I show tenderness and sensitivity towards people in my community affected by the condition, it can often be difficult to talk about dementia, but I encourage people to brave, I hope that other people will take the plunge and get help with the condition so as to improve their standard of living.’
In order to raise awareness and improve existing services for people from minority ethnic groups, the report also recommends:
- Commissioners ensure local services meet the needs of people with dementia from minority ethnic groups, ensuring that specially designed services are provided locally to suit people from a diverse range of backgrounds
- Public Health England should lead preventative work to protect people from BAME communities who are at greater risk from developing dementia
- It’s important for ethnic community groups and specialist dementia services to share knowledge and expertise to improve the quality of services
The APPG on Dementia sought evidence from a range of people, including those with dementia and their carers, health and social care providers and practitioners, and experts in dealing with challenges that can arise for people living in minority groups. Commissioners and providers of dementia support services gave examples of services that have been tailored for people in minority groups.
Baroness Sally Greengross Chair of the APPG on Dementia, said:
‘Ageing populations in BAME groups in the UK mean dementia is a growing challenge. It’s frightening to think that dementia is set to affect thousands more people from ethnic minorities and yet society isn’t geared up to deal with this.
‘Our focus now should be on ensuring high quality dementia support is available to all once they’ve received a formal diagnosis. Making sure more services are tailored to meet the needs of people with dementia from ethnic minorities is the key to helping them achieve the best possible quality of life.’
Actress and comedienne Meera Syal, who recently became an Alzheimer’s Society ambassador, is supporting the report. She said:
‘It was a shock when I found out a loved one had dementia, but what really made that time difficult was finding such a lack of appropriate care and support that caters for the needs of people from Asian communities. It’s vital that services are tailored to be meaningful and effective for people from all walks of life. Everyone wants the person that they love to have access to support that works for them.’
For more information about the inquiry and to read the findings in full, visit here alzheimers.org.uk/appginquiry