Dementia and ethnicity – Does dementia affect people from various ethnicities differently? What about diagnosis and progression of dementia for people from different ethnicities? In essence, does ethnicity matter when it comes to dementia?
Let’s find out.
Ethnicity is such a difficult but important topic to write about. Why is it difficult? Because even experts cannot agree on a unifying definition of what ethnicity means. So, let’s start with the basics, ethnicity comes from the Greek word ethnos, and refer to people, nation, class or tribe. In essence, it is meant for defining a group of people who share territory or values together. But we can already see how difficult this definition is as a nation of course has many different classes or tribes or people with different values living together. On top of that, ethnicity is often synonymously used with other ‘more loaded’ terms such as culture or race. Basically, defining ethnicity is a complete nightmare.
So, why talk about it?
Because ethnicity has important implications for many health conditions, including dementia. It has been known for many decades that the ethnicity of someone who has a disease can make a significant difference to how likely they have a health condition, how severe the symptoms might be and how effective treatments are. For example, it is well known that Type II Diabetes is more common in people from South East Asia but the reasons why that is the case, are still not clear. Still, it means that if we want to estimate the risk of someone developing Type II Diabetes, we should clearly take their ethnicity into account. But does that not mean we are racially profiling them? And here again, we are hitting the wall with ethnicity, since indeed any of those arguments can be used for some nefarious race argument. And of course, totalitarian regimes, have used this argument to ‘treat’ or even exterminate whole ethnicities. We need to be therefore aware that talking about ethnicity and health can potentially be misused. But for most of us living in democracies, exploring the links between ethnicity and health allow us to provide the best possible health and social care for people, regardless of their ethnic background.
So, what are the main ethnic issues in dementia? Do they mainly affect diagnosis or disease management or is the disease risk and progression different across ethnicities? All of those have been shown to be affected by ethnicity – with the caveat that very little research has been actually conducted in ethnicity and dementia.
Let’s start with dementia diagnosis.
Receiving a dementia diagnosis can be a distressing, if not traumatic, experience for most people. On top of that, the stigma of being labelled as having dementia is making many people very uncomfortable. And that should be not a surprise since until a few years ago many people in our societies considered that someone who has dementia has ‘lost their marbles’ or is ‘gaga in the head’. Such offensive terminology was not uncommon until recently. Thankfully, increasing awareness and campaigns have changed this quite considerably in many countries – although there is still a lot of work to do. But for people from other ethnicities, this stigma can be still a significant hurdle to get a diagnosis. For example, in some countries or immigrant communities, dementia is still seen as part of the normal ageing process and not a disease.
Often this is the case in communities with large, multi-generational families where the grandparents live in the same house or nearby and the family cares for them with people never or only very late receiving a diagnosis of dementia. Even worse, in some languages, the word ‘dementia’ has no equivalent word and hence even talking about the condition makes it very hard. Such factors lead to many people either never or only very late receiving a diagnosis. This might have not made such a big difference until recently but for the last decade or so our understanding of dementia risk factors and how to reduce them clearly makes it important to be not only aware of dementia but also delay any diagnosis.
Finally, recent pharmaceutical developments also are critical in this regard, since they require people to get an early diagnosis to be as effective as possible. Overall, we know now that getting an early diagnosis is generally a good thing as it allows us to potentially treat the disease, make arrangements and have a high quality of life. There is, therefore, a lot more work to do by healthcare professionals to reach out to such communities to make people aware that an early diagnosis of dementia is good to allow the best treatment and quality of life when living with the disease.
The issue of being less aware that dementia is a disease makes also disease management much harder since people often do not know if this is part of normal ageing and or if they should worry. This means that often care professionals only get involved at a crisis point, when there are severe health issues, such as delirium or severe behavioural symptoms. At the same time, people from many cultures would take it for granted to care for their older parents and would never think of letting their relative being cared for in a care home or by professional care staff. Now, overall that is a very commended attitude but it can go haywire if no one asks for professional help when it is truly needed. Evidence has shown that this can be challenging, since it is often self-perceived as a ‘failure’ by the family, even though it had nothing to do with their quality of care but instead was just part of the dementia progression.
Another example is when a person with dementia is admitted to the hospital after a fall or delirium and the clinical staff recommend to the family that the person with dementia might be better cared for in a care facility. This can appear highly offensive to the family who might think that their own care is ‘not good enough’. Such misunderstanding can cause a rift between families of different ethnic backgrounds and healthcare professional staff who might not even have realised which major faux-pas they have caused. Again, there is a clear need for healthcare professionals to be better trained to realise such potential faux-pas caused by ethnic attitudes and perceptions.
We can, therefore, see that even the disease management is affected by ethnicity, or if you like socio-cultural factors. But how about the actual risk for dementia?
Even dementia risk is affected by ethnicity. How is that possible? Are most dementias not caused by the accumulation of proteins and hence it should be the same across most people. That is true, but the accumulation of proteins can be influenced by other factors (environmental, genetic, lifestyle other diseases the person might have). For example, it is known that Diabetes Type II has a strong link to increase the accumulation of amyloid and tau, two key proteins involved in the development of Alzheimer’s disease. This means if we have Diabetes Type II then we are at a higher risk of developing dementia (Type I Diabetes is not affecting our dementia risk, if well-regulated). Since we know that certain ethnic groups, such as South Asian or Hispanic/Latino ethnic groups, have often a higher incidence of Diabetes Type II, it makes sense that they also have a higher risk for dementia. The few studies which have investigated this, in these particular ethnicities, have found exactly that – an increased risk of dementia in those populations compared, likely due to other diseases these ethnicities more likely have.
Finally, genetics plays also a role in dementia risk across ethnicities. Now, we need to qualify that we mean here genetic risks that ‘only’ increase or decrease our risk for dementia. We are not talking about genes that cause dementia, which are extremely rare. Instead, we are talking about genes that increase or decrease our risk for dementia. The best-known risk gene for dementia is APOE (short for Apolipoprotein E). The APOE gene has been shown to increase our risk for dementia if we have certain types of the gene. Other types of the APOE gene do not increase our risk for dementia or even reduce our risk for dementia. But even if we have the ‘risk’ APOE gene, then our ethnicity plays a significant role as to how much it increases our risk for dementia. In white American and European populations the APOE risk genes increase our risk for dementia by up to 12-fold. By contrast, African Americans have only an increased risk of 6-fold and Hispanic/Latina Americans of 2-fold – a much lower genetic risk of dementia than the white ethnic populations. By contrast, Japanese people with the risk APOE gene have a 33-fold increased risk of dementia, nearly 3 times higher than Caucasian American and European ethnicities. These are enormous differences and it is still not clear why there are such big differences between the ethnicities for their genetic risk. But we can see now that ethnicity plays a significant role even in our genetic risk for dementia.
But as mentioned before, the relationship fo ethnicity and dementia is still quite poorly understood as there is still very little research in this area. Thankfully, this currently changing with many more research projects investigating specific questions as to how ethnicity might be linked to dementia diagnosis, management or risk. For example, one of the main US government research funders has just announced to fund a new dementia centre in the Southwest of the US to investigate specifically how dementia affects Hispanic/Latino populations, which are very common in that regions of the US. These are welcome developments as we need to develop more specific knowledge on how ethnicity and dementia interact and my article is simply meant to point out that there is such a large knowledge gap for this topic.
In summary, the relationship between dementia and ethnicity is still poorly understood. Most research to date has been conducted in WEIRD (Western Educated Industrialised Rich Democratic) societies with the majority of research participants being of Caucasian background. Much less is known of other ethnicities and how dementia is dealt with in terms of diagnosis, management and risk. There is an urgent need to rectify this. A first step for rich countries is to start understanding how ethnic minorities in their own countries might be differently affected by dementia. There are positive signs that this is changing, for example, there is now much more research occurring in people from South Asian backgrounds. Similarly, in the US there is now more research happening within African American or Hispanic/Latino populations, which will help to understand how ethnicity affects dementia diagnostic, management and risk in our rich societies. Further, there is clearly a bigger need for healthcare professionals to be better trained on how to take ethnic background into account when diagnosing or treating dementia. Only once we understand better how ethnicity affects dementia we can actually allow the person with dementia to get the best possible prevention, diagnosis or treatment for the disease.