Note: This article was originally posted by Dementia Researcher on 02 August 2024. All rights belong to the original author.
The UK population is ethnically, culturally and religiously diverse. However, when it comes to dementia care – there is a pressing issue – the underrepresentation and challenges faced by Black, Asian and Minority Ethnic (BAME) communities in accessing and receiving appropriate dementia care and management. Currently, 3% of all people with dementia in the UK come from BAME backgrounds, a number projected to double by 2026, particularly affecting South Asian communities.
Defining BAME Communities
When we refer to BAME communities, it’s important to acknowledge the range of cultures ethnicities and religious backgrounds included within this term. These communities are changing and evolving over time and generations, which presents new and unique challenges when it comes to dementia care provision and policy decisions.
Inclusivity and Access to Services
One of the key challenges in dementia care is ensuring inclusivity of BAME communities. Due to limited funding and resources, research efforts investigating the impact of dementia within these communities is limited. BAME communities often experience delays in getting a dementia diagnosis, and face barriers in accessing essential services. Participation in research studies through platforms like “Join Dementia Research” are disproportionately low among BAME groups, worsening the challenge of understanding and addressing these community’s specific needs.
Expanding Research and Culturally Relevant Interventions
Research is needed to explore the experiences of BAME communities and develop culturally relevant interventions and services. Collaboration among researchers, policymakers, and community stakeholders is vital in driving this research forward and addressing the existing gaps in knowledge and understanding. Efforts to include BAME groups in research needs to be proactive, such as representation in study recruitment and public involvement. Research funders must recognise the additional time and resources required for recruiting individuals from BAME communities and prioritise inclusivity in funding decisions.
Addressing Stigma and Promoting Awareness
Promoting awareness and in turn combatting stigma are key to improving dementia care within BAME communities. Historically, dementia has been highly stigmatised in many BAME communities. An important variable to consider is how dementia is communicated to BAME groups in an accessible and welcome way. Alzheimer’s Research UK has a great initiative for this in the form of multilingual ‘Quick Guides to Dementia’. These help to bridge communication gaps and improve access to information among communities where English may not be their first language. www.alzheimersresearchuk.org/supporter-orders.
Another key factor to consider is the application and use of diagnostic assessments – and how those that are available may not be suitable for all communities. The memory tests conducted in GP clinics benchmark performance against norms established within the majority white British population; the absence of BAME-specific norms on these assessments poses a significant obstacle in accurately diagnosing dementia within these communities.
Cultural differences and caregiving
Family structures may also differ from the traditional Western family model, often integrating strong intergenerational ties and collective responsibility for elder care. In many BAME groups, caregiving is viewed as a familial obligation, rather than the responsibility of turning to professional caregivers and care homes. This emphasis on informal, family support can positively impact the well-being of people with dementia, but it can also pose challenges – especially when considering how to navigate the healthcare system when it does not culturally align. Understanding and respecting these cultural differences is important for providing effective dementia care that is tailored to the specific needs of BAME individuals and their families, and also highlights the importance of serving caregivers of people living with dementia in these communities too.
As dementia care and management remains a public health priority, it is so important to recognise and address the unique challenges faced by BAME communities. By fostering understanding, collaboration, and inclusivity, we can aim for a future where dementia care is equitable and accessible for all communities.
About the Author
Hannah Hussain is a PhD Student in Health Economics at The University of Sheffield. As a proud third generation migrant and British-Asian, her career path has been linear and ever evolving, originally qualifying as a Pharmacist in Nottingham, then Health Economics in Birmingham. Her studies have opened a world into Psychology, Mental Health and other areas of health, and with that and personal influences she found her passion for dementia.
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