Black and minority ethnic groups account for 15% of the UK and 40% of the London population. African and Caribbean elders develop dementia more often and earlier than the white UK population but access services later, and usually in crisis. Diagnostic certainty allows people with dementia and their carers to plan and make choices, to play a more active role in their care, facilitates access to specialist services, reduces crises and delays care-home admission.
We are developing an intervention which will encourage earlier help-seeking for dementia in Black African and Caribbean elders. Focus groups and individual interviews with UK Black African and Caribbean adults found that people thought:
• forgetfulness is not indicative of dementia
• dementia is not an illness affecting Black communities
• memory problems are not important enough to seek medical help
• lifestyle changes would be associated with a dementia diagnosis, as well as the risk to confidentiality and privacy
An intervention comprising a leaflet that we designed to address the barriers to help-seeking specific to Black African and Caribbean elders is being trialled.
Principal investigator: Professor Gill Livingston, UCL
Other project team members: Moïse Roche and Peter McCarthy, UCL
Start date and duration: April 2014, three years
Partners and collaborators involved: UCL, Camden and Islington NHS Foundation Trust