In this post Betsy Jones (UCL Research Department of Primary Care and Population Health) writes about her experience of attending the Alzheimer’s Association International Conference and why we do the work we do. 

I have been assured that asking oneself “Why am I doing this?!” is not an experience unique to any one stage of a research career. The key is having a good answer.

At the height of the British summer heat wave, I travelled to Chicago, to give an oral presentation to the Alzheimer’s Association International Conference (AAIC) on a project I’ve joined, funded by the Dunhill Medical Trust, addressing inequality in primary care of people with dementia among UK ethnic groups.

The first phase of the project has already been published in Clinical Epidemiology and found that dementia diagnosis incidence was significantly higher in Black men and women compared to White men and women, respectively, and was significantly lower in Asian women compared to White women. Tra recently wrote a blog on this below. I presented these results along with new results showing inequality by ethnicity in prescribing of certain drugs among patients with dementia.

The presentation itself went smoothly, and I breathed a sigh of relief as I walked off stage. With the nerves and the bright lights out of the way, I was excited to find that a queue of people were keen to talk with me about the project.

Multiple researchers expressed how grateful they were that someone was looking into this area, highlighting that while the demographics of many developed nations are changing, the research has not often kept up. Others wanted to share personal experiences, speaking of the reluctance of family members to seek a diagnosis or medication even as their condition progressed, especially when cultural factors around memory problems and fear of stigma were at play. These conversations made clear that the need to identify inequalities and break down barriers to good quality care was not a problem unique to the UK, but everyone I spoke with reinforced how important it was to see that we’re working on it.

In the midst of Stata code, funding applications, and reviewer comments, we can lose sight of the goal. As researchers, we have the privilege of generating work that can improve peoples’ lives. We can be reminded of that by our Patient & Public Involvement advisors, our colleagues, or a review of the “Impact” section of our own funding application (and hopefully by this blog post). My conversations with a variety of people after my presentation was a wonderful reminder of the goal and impact of this project. I hope you can take a moment today to remember the goal of your work too, because you’re doing this for a good reason!

In this post Tra Pham (UCL Research Department of Primary Care and Population Health) discusses her recent work with colleagues from the department, Division of Psychiatry and King’s College London on new diagnoses of dementia and the differences among ethnic groups.

Around 46.8 million people worldwide have dementia; this is expected to rise to 131.5 million by 2050. Recent studies have reported stable or declining rates of new dementia cases overtime.

In 2010, members of our department (Rait et al, 2010, BMJ) conducted a primary care database study to investigate survival of people with a diagnosis of dementia, and reported a stable rate of new dementia diagnoses in UK primary care between 1990 and 2007. We know little about the differences in the likelihood of receiving a dementia diagnosis among different ethnic groups. Some evidence has indicated that people from Black and Minor Ethnic (BME) groups present at services (i.e. GP) later in their illness. Therefore, compared with the White British ethnic group, BME dementia patients may have less access to timely diagnosis. This can prevent them from benefiting from early intervention and treatment which may help slow the progression of the disease.

Our recent study reported the overall rate of new dementia diagnoses in UK primary care between 2007 and 2015. In addition, we reported, for the first time, the rate by White, Asian, and Black ethnic groups. Pulling together current best evidence of new dementia cases in the community and the 2015 UK census data, we estimated the proportion of White and Black people developing dementia who received a diagnosis in 2015. Our hypothesis was that there would be a smaller proportion of Black people with dementia who were diagnosed compared with people from the White ethnic group.

We analysed data of 2.5 million older people from The Health Improvement Network (THIN) database. 66,083 new cases of dementia were identified, which corresponded to an increased rate of new dementia diagnoses between 2007 and 2015 (Figure 1).

Compared with White women, the dementia diagnosis rate was 18% lower among Asian women and 25% higher among Black women. This rate was 28% higher among Black men and 12% lower in Asian men, relative to White men. Based on diagnosis rates in THIN data and projections of new dementia cases from community cohort studies, we estimated that 42% of Black men developing dementia in 2015 were diagnosed, compared with 53% of White men.

The results thus suggest that the rates of people receiving a diagnosis may be lower than the actual rates of developing dementia in certain groups, particularly among Black men. There are several possible explanations for this. It could indicate that Black men experience barriers to accessing health services or receiving a diagnosis. GPs may be more reluctant to diagnose dementia in BME groups especially if culturally competent tests are unavailable. GPs and families might also be reluctant to name dementia in communities where more stigma is associated with a diagnosis.

Our study emphasises the need for service improvement targeting BME groups who might be facing barriers to accessing health care services and getting a dementia diagnosis. GPs should be equipped with culturally appropriate assessment tools in order to make a timely diagnosis of dementia for BME patients.

Our findings also highlight the importance of raising awareness of the benefits of getting a timely diagnosis of dementia, particularly in people from minority ethnic groups who may be more at risk of dementia. Timely diagnosis of dementia can lead to more targeted support and enable GPs to provide appropriate patient care management. These benefits can be explained to the patients by family and friends, as well as professionals such as nurses and social workers. They can also help the patients to overcome the fears of talking about dementia. Faith and community groups can contribute to ensuring that local dementia services are accessible to all.

This study is conducted in collaboration with King’s College London. This work is supported by The Dunhill Medical Trust [grant number R530/1116]. Our article and relevant references can be found at:

Pham TM, Petersen I, Walters K, Raine R, Manthorpe J, Mukadam N, Cooper C (2018). Trends in dementia diagnosis rates in UK ethnic groups: analysis of UK primary care data. Clinical Epidemiology (10): 949-960. doi: 10.2147/CLEP.S152647.

This article is courtesy of the UCL Research Department of Primary Care and Population Health blog