Improving the care of Black African and Caribbean people living with dementia

Black African and Caribbean elders develop dementia more often and earlier than their white counterparts, but access dementia services later in the course of their illness and often in response to crisis. Their involvement in research and treatment uptake for dementia also seem to differ from the majority of the population.

Timely diagnosis and help-seeking for dementia is recommended globally, as it allows access to therapeutic treatments and interventions which are more effective in the early stages of the condition. Timely diagnosis of dementia also facilitates access to health and social care, prolongs independent living, and allows patients and carers to maintain good quality of life for longer while reducing crises and costs associated with delayed help-seeking behaviours.

We know that cultural factors about health and ageing influence how people respond to dementia and whether or not they access services. This project led by UCL in collaboration with Camden and Islington NHS Trust set out to understand how black families respond to memory problems, a possible sign of dementia and what prevents them from seeking help from healthcare professionals when they first notice symptoms indicative of dementia.

The project involved multiple qualitative interviews with 50 black adults with various socio-demographic characteristics and from different backgrounds to identify the barriers and facilitators to seeking help for dementia. It used people’s responses to develop an intervention specifically tailored to a black audience. The intervention was then refined by incorporating feedback and comments from dementia patients, carers, volunteers from the public, clinicians and experts in the treatment and research of dementia.

The qualitative interviews to identify the barriers and facilitators to early access to dementia care found that:

• people delayed access to dementia services because they did not consider dementia an illness of Black communities. They also disregarded forgetfulness as a possible symptom of dementia and thought seeking medical help would be wasting GP’s time.
• previous negative experiences with health professionals whom people found unhelpful, rushed or dismissive further discouraged initiating contact with healthcare services, which they did not trust to keep their personal affairs private and confidential
• people feared negatives consequences of presenting with memory problems and mental health concerns, such as stigma, embarrassment and the threat of institutionalisation.

These findings were used to inform the development of an intervention, which consisted of a letter and a ‘Getting help for forgetfulness’ leaflet. This was piloted in a randomised controlled trial with patients of Black African or Caribbean origin via 5 GP surgeries and found to be acceptable. Our findings also indicated that a larger efficacy trial would be feasible. 

The team also explored making the STrAtegies for RelaTives (START) intervention culturally acceptable to black carers and are now testing this in an implementation study.

The intervention led to the development of a letter and leaflet, encouraging timely help-seeking for dementia in Black African and Caribbean families.

The leaflet highlighted the symptoms of dementia, the importance of talking to a GP about these symptoms, the benefits of overcoming barriers to help-seeking early, and listed contact details for help and more information. Organisations can use the leaflet to encourage their members to seek help for forgetfulness.

Dementia Action Alliance is promoting this intervention as a resource on their website. 

Download the leaflet

Individuals who are worried about their memory should talk to their GP.

Find out more about the project and its impacts in the short video below:

University College London (UCL)

Camden and Islington NHS Trust

NIHR CLAHRC (now ARC) North Thames