Recent UK government initiatives focus on early dementia diagnosis and prioritise improving access to memory services for people from minority ethnic groups, as significant health inequalities exist. Black African and Caribbean elders (BACe) develop dementia more often and earlier than the white UK population, yet access memory services later, often responding to crisis. There is little research exploring these differences although attitudes towards dementia help-seeking vary between cultures. CLAHRC NT designed an evidence-based intervention aiming to address these issues.
Qualitative interviews were completed with 50 BACe (http://dx.doi.org/10.1371/journal.pone.0151878). Social and cultural barriers specific to this group were: forgetfulness is not seen as indicative of dementia; Dementia is not perceived to be applicable to black ethnicities (it is viewed as a white person’s illness); GP consultations for forgetfulness are believed to be pointless (it is “part of ageing”); Seeing a GP is considered only for “severe problems”; Privacy of personal affairs is highly valued, therefore people often do not want to discuss what they regard as a stigmatising problem with a GP; little knowledge of memory services and GP’s role as referrer; Concern about harm from medication and compulsory institutionalisation; a belief that care should be from the family.
Based on these findings, and further consultations with families and people with dementia, a leaflet ‘Getting help for forgetfulness’ was designed, emphasising 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 to prolong independence and support families. CLAHRC NT researchers have piloted this and found it acceptable and thought to be helpful for BACe and have made the leaflet widely available including on websites.
The leaflet is therefore now available to the public, and is disseminated across the UK through the NHS, community, voluntary, and charitable organisations.
Contribution of CLAHRC North Thames
The research assistants are funded by CLAHRC North Thames. CLAHRC have also contributed statistical expertise and advice regarding design of the intervention and training. The CLAHRC also extended invitations to research events and conferences.
With CLAHRC funding, a pilot RCT in BACe was completed via five GP surgeries. 787 invitations were sent; receiving only 65 replies despite voucher incentives. 47 participants were analysed after ineligibility exclusions and refusals. Participants reported reading and finding “Getting help for forgetfulness” useful, relevant and acceptable, and results are currently in press, ‘The IDEMCare - Improving Dementia Care in Black African and Caribbean Groups - study: a feasibility cluster randomised controlled trial’ (International Journal of Geriatric Psychiatry).
However, given the recruitment difficulties it was decided that a full trial was not feasible.
What happened next?
Given that the leaflet intervention is acceptable, inexpensive and unlikely to cause harm, CLAHRC NT judged it appropriate to disseminate without a full-scale trial.
The leaflet is therefore now available to the public, and is disseminated across the UK through the NHS, community, voluntary, and charitable organisations. Nearly 4,500 hard copies were distributed across 38 organisations (as well as to the 50 qualitative interview participants who were involved in the initial phase of the study and contributed to its development). Electronic versions were given to web-based organisations; the London Memory Clinic have agreed to add it to their website. The Alzheimer’s Society (Leicester) commented that the leaflets “are an extremely useful resource in getting the message across”.
Preliminary findings were presented at Health Services Research UK conference (winning People’s Poster Prize).
The research will be extended via a successful Doctoral Fellowship award (Alzheimer’s Society).