A study conducted by UC Davis Health and Oregon Health & Science University in early 2024 highlighted significant disparities in dementia care.
The research revealed that individuals from minoritised racial and ethnic groups are less likely to receive an accurate and timely dementia diagnosis compared to non-Hispanic white individuals. These populations are also less likely to be prescribed anti-dementia medications or utilise hospice care. Moreover, the study found that these groups face a higher risk of hospitalisation and are more likely to receive aggressive life-sustaining treatments during end-of-life care.
In this article for Asian Voice, Hannah Hussain, an Economist at OHE since September 2024, sheds light on the disparities in dementia care. With a strong background in health economics, she brings valuable expertise to the discussion, particularly in the context of dementia.
Her career has been shaped by her experience in NHS primary care and her previous role as a research associate at the Manchester Centre for Health Economics (MCHE), where she contributed to a multinational dementia trial.
Could you share your insights on the cultural perceptions surrounding dementia within ethnic minority communities?
The stigma surrounding dementia can be influenced by several factors. Some communities are less likely to seek healthcare due to cultural norms or past experiences. This lack of trust in healthcare systems, often stemming from experiences "back home," can lead people to rely on spiritual or religious healers as their primary source of guidance. This mistrust contributes to a broader reluctance to seek medical help, affecting all health conditions, including dementia. Dementia carries a unique stigma due to its mental health component as well. While it is a physical condition impacting the brain, the mental and emotional effects are significant.
For ethnic minority populations, particularly those who migrated to the UK as pioneers, this can be especially challenging. Many in these communities have lived independent, self-reliant lives, and adjusting to the changes brought about by dementia can be profoundly difficult—not only for individuals but also for their families and caregivers. Another key factor is the cultural context of patriarchal structures within many ethnic minority and BAME communities. In such settings, older male figures are often seen as stoic and detached, taking on a more observational role in social situations. This cultural expectation can sometimes mask early signs of dementia.
Could you elaborate on the disparities in social care resources when it comes to ethnic minorities? Specifically, why and how do these disparities arise, and what factors contribute to them?
Family structures in ethnic minority communities often prioritise home caregiving for elderly members, with a cultural stigma attached to using professional care services or placing loved ones in care homes. This mindset results in a reliance on informal caregivers, typically family members, and a reduced uptake of formal social services. Consequently, the needs of these communities often go unmet as they do not seek support from formal care systems.
Furthermore, these communities are underrepresented in research, making it harder to address their specific needs. It is essential for care providers to proactively engage with these groups and ensure their voices are heard. To reduce disparities in social care, services must be culturally tailored and relevant. Engaging with local religious sites, community centres, and using culturally appropriate public health campaigns can help. Advertising in specific languages and reflecting cultural sensitivities can raise awareness of services and their importance. Effective implementation of these strategies remains a priority.
What are some early signs of dementia that we should pay attention to, and how can we encourage people to overcome this reluctance and engage with the diagnostic process?
Diagnosing dementia can be challenging due to the many overlapping subtypes, such as mixed dementia. Accurate diagnoses are often more feasible when physical changes, like those seen in vascular dementia, are present. This form of dementia is increasingly relevant for South Asian communities, given the high prevalence of conditions like diabetes and heart disease.
Screening tools, such as the Mini-Mental State Examination (MMSE), are commonly used in memory clinics and primary care. However, these tools must be adapted for cultural relevance. For example, questions involving animals may not resonate with all populations—my grandmother from Pakistan might not recognise a dolphin. It's crucial that diagnostic tools are appropriately translated and administered with cultural sensitivities to avoid misinterpretation.
Dementia’s early signs fall into three key areas: cognitive impairment, which involves memory, judgment, reasoning, and recall; behavioural and mood changes, such as confusion, withdrawal, or altered behaviour; and functional impairment, which begins with difficulties in daily activities and progresses to more basic functions. Early indicators can include social isolation or disengagement in conversations, which may signal cognitive or functional decline. A combination of symptoms—such as memory lapses, confusion, and mood changes—should prompt further evaluation.
What are some ways ethnic minorities can ensure that their elders age in a healthy manner?
Health and well-being principles, such as maintaining a healthy diet, are universal but must be framed in a way that resonates with different communities. For South Asian communities, managing cholesterol is particularly crucial, given the higher prevalence of health conditions like heart disease and diabetes, which increase the risk of vascular dementia. Encouraging lifestyle changes like quitting smoking, exercising, and overall well-being can significantly reduce these risks. Additionally, staying mentally engaged and fostering an active, healthy community life can help maintain cognitive health.
Promoting regular health screenings is essential, especially in places where elderly ethnic minority communities are already familiar, such as temples or mosques. These locations provide accessible platforms for individuals to engage with health services, increasing awareness and facilitating care. The key is not to complicate matters—what benefits the general elderly population also applies to ethnic minorities, but the promotion must be culturally relevant and easily accessible.
Lastly, it’s important to acknowledge dementia with Lewy bodies, a type of dementia associated with hallucinations, which is especially relevant for elderly individuals from ethnic minority communities who may have experienced trauma, such as the effects of partition. Recognising the intersection of trauma and dementia symptoms can help families and caregivers offer compassionate and informed care.
