Abstract
ObjectivesWe aimed to identify and explore the barriers to help-seeking for memory problems, specifically within UK Black African and Caribbean communities.MethodWe purposively recruited participants from community groups and subsequent snowball sampling, to achieve a maximum variation sample and employed thematic analysis. Our qualitative semi-structured interviews used a vignette portraying a person with symptoms of dementia, and we asked what they or their family should do. We stopped recruiting when no new themes were arising.Results and significanceWe recruited 50 people from a range of age groups, country of origin, time in the UK, religion and socio-economic background. Some of the barriers to presentation with dementia have been reported before, but others were specific to this group and newly identified. Many people recognised forgetfulness but neither that it could be indicative of dementia, nor the concept of dementia as applying to them. Dementia was viewed as a white person’s illness. Participants felt there was little point in consulting a doctor for forgetfulness. Many thought that seeing a GP was only for severe problems. Some said that their culture was secretive and highly valued privacy of personal affairs and therefore did not want to discuss what they regarded as a private and stigmatising problem with a GP. Participants did not appreciate their GP could refer to memory services who have more time and expertise. They were concerned about harm from medication and compulsory institutionalisation. Care should be from the family. Any intervention should emphasise the legitimacy of seeing a doctor early for memory concerns, that dementia is a physical illness which also occurs in the Black community, that help and time are available from memory services whose role is to prolong independence and support families in caring.
Highlights
We aimed to identify and explore the barriers to help-seeking for memory problems, within UK Black African and Caribbean communities
Black African and Caribbean elders (BACE) have a higher prevalence and earlier onset of dementia compared with the indigenous White UK population [1, 2]
We found that higher number of Africans reported a lack of knowledge of dementia and greater reliance on community, family and friends for support, advice and care
Summary
Black African and Caribbean elders (BACE) have a higher prevalence and earlier onset of dementia compared with the indigenous White UK population [1, 2]. People with dementia and their carers usually begin help-seeking from close family and follow this up by consulting primary care physicians.” [7] People from BME populations as a whole have been reported to present later for a number of reasons. These include normalisation of memory problems, concerns about stigma related to dementia, belief that families rather than services are the appropriate resource, previous negative experiences of health services, concern about the threat of receiving a diagnosis, language barriers and lack of knowledge[7,8,9,10,11]. One small study compared eighteen carers of patients with dementia from Black
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