Introduction

Dementia is highly prevalent worldwide, with 57 million people recorded as having dementia in 2021 and 10 million new diagnoses reported every year [1]. In actuality, dementia prevalence is likely to be much higher. Most studies are conducted in high-income countries and data from low-and middle-income countries (LMICs) is sparse [2,3].

People experiencing impairment in one or more cognitive domains without significant implications for activities of daily living may be diagnosed with mild cognitive impairment (MCI) [4]. While not all people experiencing MCI transition to dementia, MCI is a significant risk factor [5]. Dementia is diagnosed when there is ‘marked impairment in two or more cognitive domains relative to that expected’ [6], impacting on activities of daily living [6].

MCI and dementia may be prodromal for more than a decade [1]. Early diagnosis offers individuals sufficient time to make decisions about care and treatment, enabling plans for the future [2]. Therefore, from a societal perspective, early intervention may reduce health and social care costs by preventing unnecessary hospital admissions [1]. Given the total cost of dementia care in the United Kingdom (UK) is estimated to be 42 billion per year [3], dementia is a public health priority [1,7].

Current health and social care strategies to address dementia often overlook the specific needs of minoritised ethnic groups, offering generic policy recommendations instead of engaging with different community groups to fully understand cultural acceptability [8]. Although there is no internationally accepted definition of a minoritised group in law, minoritised ethnic groups can be considered the non-dominant population in each country in relation to ethnic, linguistic or religious characteristics [9]. Umbrella terms such as minority ethnic, ethnic minority and minoritised ethnic group should be used with caution [10].

When it is contextually justified to explore ethnicity as a broad category, in the UK the term ‘minoritised ethnic group’ is considered preferrable, in recognition that individuals are ‘minoritised through social processes of power and domination’ [10], also acknowledging that every person belongs to an ethnic group and ethnic minorities in one country are majorities elsewhere [10]. We use the term ‘minoritised ethnic group’ in this review; however, it is recognised that there is no universal approach and that healthcare systems need to respond to different minoritised people in a range of situations to provide quality intercultural care and support [11].

Data from healthcare records indicates some people from minoritised ethnic groups in the UK and the United States of America (USA) are utilising dementia services less frequently than the majority groups [1]. The incidence and prevalence of dementia are higher in some minoritised ethnic groups [1] e.g., in UK Black communities [12]. South Asian and Black people with dementia in the UK die younger than other ethnic groups [1]. There are serious and urgent concerns about the exclusion of minoritised ethnic groups from dementia care and a need to overcome the barriers currently inhibiting diagnosis [2,13].

While cognitive decline is not an inevitable part of biological aging [14], in some minoritised ethnic groups cognitive decline is normalised and there is little concept of ‘healthy aging’ e.g., among some Chinese Americans [15]. Cultural beliefs and perceptions about dementia and its aetiology may mean dementia is not recognised by some minoritised families [2]. Moreover, accessing help outside the family may be taboo and stigmatising [16] with a heavy burden placed on families, particularly women and children, to provide care at home [17].

When people do seek help, screening and assessment may be susceptible to cultural biases [18]. Indeed, most neuropsychological tests have been developed for Western White populations [19]. Screening tools such as the Rowland Universal Dementia Scale (RUDAS) designed to minimise the impact of cultural and language differences may still not offer a one size fits all approach [20] and the time required to administer the tool may deter use [21]. Many clinicians lack confidence overall to respond to the needs of minoritised groups [22], and as such, there may be deficiencies in assessments with bilingual and multilingual people [19].

People from minoritised ethnic groups may be at high risk of dementia being missed and consequently may experience delayed dementia treatment and care [2,19]. There is an urgent need to collate and synthesise [23] the international literature to better understand the language and cultural considerations related to screening, assessing, and caring for people who are living with dementia and MCI from different minoritised ethnic groups.

Materials and methods

Discussion

Language and cultural considerations are highly relevant when screening, assessing, and caring for people from minoritised ethnic groups but can be overlooked as part of routine health and social care, resulting in disparities and health inequalities [28]. The mismatch between the incidence and prevalence of dementia reported in some minoritised ethnic groups in both the UK and the USA and the comparably low number of cases identifiable in clinical records represents an urgent and important concern [1].

We are currently unaware of any systematic scoping review of the international evidence related to language and cultural considerations when screening, assessing, and caring for minoritised ethnic groups living with dementia or MCI. This scoping review will address this knowledge and practice gap by systematically collating and synthesising the extant literature to examine what is known about the language and cultural considerations related to screening, assessing, and caring for people living with MCI or dementia from minoritised ethnic groups.

A potential limitation of this review is that it will involve a broad population, concept, and context requiring an extensive search, and encompassing a plethora of issues. However, this is an accepted feature of scoping reviews given their broader scope and research questions compared to, for example, systematic reviews [29]. A strength of this review is that the reviewers are from a range of disciplines including social work, psychology, nursing, medicine and psychiatry, and therefore represent ‘knowledge users’. The inclusion of knowledge users in scoping review teams has been considered to add focus, insight, and support prioritisation and the development of recommendations [30].

A further limitation of the review is that we will only be able to include publications in the English language due to resource limitations. We also had to make a pragmatic decision to exclude articles focused on the needs of caregivers. However, despite these limitations, our focus specifically on considerations impacting minoritised ethnic groups in each country of origin will enable this review to capture the breadth of understanding about the considerations, challenges raised and adaptations needed.

We will work with experts by experience to interpret our findings. We will also include articles concerning caregiver ‘knowledge’ of dementia or MCI to ensure that some aspect of the lived experience of caregiving is captured in this review. This is important because caregiver knowledge may impact the subsequent support a family member might receive.

This review is long overdue and will provide multi-agency practitioners, healthcare professionals, commissioners and policymakers with new insights related to the impact of language and culture when screening, assessing, and caring for people living with MCI or dementia from minoritised ethnic groups.

Supporting information

Acknowledgments

We would like to thank Claire Hodkinson, a university library information specialist who supported with the review’s search strategy development.