Five Glaring Inequities in Dementia Care for People of Colour

The consequences, the care, and how we can change.

Public Health Crisis: A situation that significantly impacts a community’s health, incurs loss of life, and financial hardship. They may result from a lack of care, prevalent disease, or poor policy.

Mindset unequivocally supports #BlackLivesMatter and pledges to do more to combat racism. As we reflect on and scrutinise our own industry, Mindset finds that racism in medicine is well documented but too easily forgotten. From delays in treatment for the Windrush generation to minority healthcare workers accounting for over 70% of COVID-19 front-line deaths, racial discrepancies are loud but appear to have fallen on apathetic ears (1). Mindset has taken the time to listen and outlined a plan of action. Here are five key aspects of dementia healthcare that are lacking in equitable care, and five actions Mindset pledges to in order to better support patients of colour.

1.The Windrush generation encompasses nearly half a million elderly individuals, for many of whom the NHS should have been a place of work, care, and understanding. However, racial prejudice, ranging from the Immigration Act 1988 to insensitive treatment in A&E, has resulted in individuals of the Windrush generation being undersupported and undertreated.

“Those diagnosed [with dementia] will struggle alongside their families to come to terms with an illness they feel they don’t understand and a care system that they feel has no empathic response for their culture and history.“

- David Truswell, Dementia Alliance for Culture and Ethnicity, on caring for the Windrush generation (2).

A myriad of statistics reveal how the very community that nurtured the NHS into existence has endured racial prejudice, with instances of patients avoiding necessary treatment in fear of hostile care (3). Moreover, with decisions made by a predominantly white leadership, a lack of effective outreach has incurred poorer healthcare outcomes for black, asian and minority ethnic (BAME) patients (4). Hence, Mindset pledges to support this community by effectively delivering our technology to homes that care for the Windrush generation.

2.Certain dementia research guidelines stem from studies that are disproportionately based on white patients. For example, black patients can have differently functioning tau proteins (a marker associated with Alzheimer’s disease) to white patients, which is believed to put them at a greater risk of dementia (5). Despite knowing that this biomarker can vary according to race, the threshold continues to be based on that for white patients, failing to take into account the variation seen in black patients.

Mindset therefore pledges to only utilise up-to-date medical research that reaches scientific fact by appropriately accounting for race. More, we hope to publish our own research findings that are reflective of the entire community.

3.More and more healthcare tools rely on artificial intelligence (AI) to improve their diagnostic accuracy. Generally, a competent AI will have studied not just a lot of data, but a lot of diverse data. In medicine, this particularly means showing AI models patients of different races. However, landmark studies have shown that current AI models have significant levels of racial bias. In the US, an AI responsible for allocating healthcare systematically under-allocated healthcare to black patients, preventing over 30% of black patients from receiving the care that they needed (6).

As AI is an integral part of Mindset, we pledge to ensure that our AI is trained on a diverse dataset, ensuring that all groups are accounted for but never discriminated against.

4.An estimated 300 languages are spoken across London, yet there is little consideration given to delivering care or treatment in anything other than English. Consequently, patients without English proficiency are often reluctant to access healthcare due to the anticipated difficulty in communicating (7).

An individual’s language should not be a barrier to care. Mindset therefore pledges to increase the number of languages the app is offered in, ensuring easy access to all patients, regardless of where they are from.

5.Recent studies have evidenced that even current dementia screening techniques are biased against BAME patients, with false positive rates of up to 42%, compared to only 6% in white patients (8). Utilising a screening tool with a significantly higher false positive rate burdens patients with anxiety, financial stress, and familial hardship.

Mindset is working hard to overcome the lack of accurate dementia screening tools. Now, before we release our solution, we pledge to ensure that our diagnostic tool delivers a high-standard of care to all users.

“Not everything that is faced can be changed. But nothing can be changed until it is faced,” — James Baldwin.

1. Kmietowicz Z, Ladher N, Rao M, Salway S, Abbasi K, Adebowale V. Ethnic minority staff and patients: a health service failure. BMJ 2019 May 21;365:l2226.
2. Truswell D. Dementia and the Windrush Generation. 2018; Available at: https://www.independentage.org/ageism-plus/ageism-plus-blog/news-media/dementia-and-windrush-generation. Accessed June 12, 2020.
3. Bhagawati D. My patient avoided NHS treatment for three years because he didn’t want to become another Windrush victim. 2018; Available at :https://www.independent.co.uk/voices/nhs-health-windrush-jamaica-home-office-deportation-hostile-environment-a8783261.html.
4. McKenzie K, Bhui K. Institutional racism in mental health care. BMJ 2007;334(7595):649–650.
5. Morris JC, Schindler SE, McCue LM, Moulder KL, Benzinger TLS, Cruchaga C, et al. Assessment of Racial Disparities in Biomarkers for Alzheimer Disease. JAMA Neurol 2019;76(3):264–273.
6. Obermeyer Z, Powers B, Vogeli C, Mullainathan S. Dissecting racial bias in an algorithm used to manage the health of populations. Science 2019 Oct 25;366(6464):447–453.
7. Lee Y-. The immigration experience among elderly Korean immigrants. J Psychiatr Ment Health Nurs 2007;14(4):403–410.
8. Chin AL, Negash S, Hamilton R. Diversity and disparity in dementia: the impact of ethnoracial differences in Alzheimer disease. Alzheimer Dis Assoc Disord 2011 Jul;25(3):187–195.

Edited and written by Pranav Satish, Hugo Walford, Theo RIfkin-Zybutz, Aaron Lin, Itai Palmon, and Hamzah Selim.