Factors contributing to inequalities in Dementia diagnosis and care

Age

Most research focuses on late onset dementia, which typically has its onset after the age of 65. While this does account for the vast majority of dementia cases, young onset dementia still comprises a significant proportion of cases but tends to be neglected.

Research on dementia prevention has mostly focused on late onset dementia, though there is some evidence that there are also potentially modifiable risk factors for young onset dementia (Cations, Withall, and Draper 2019). Focusing attention on these can help to reduce the risk of young onset dementia but this has been relatively overlooked.

Young onset dementia takes longer to diagnose than late onset dementia, meaning people living with it experience greater delays and uncertainty (Van Vliet et al. 2013).

Sex

Dementia is more common in women (Gong et al 2023) although not all studies have found this.

Women also bear more of the burden of caring for someone with dementia (Alzheimer’s Disease International report 2020). Differences by gender vary geographically and may be driven by discrimination and sociocultural inequalities as highlighted by this report.

Ethnicity

Dementia is more common in some minority ethnic groups in Europe, particularly when population based surveys are used rather than surveys relying on routinely collected data. These patterns of an increased rate of dementia in minority groups is also found in the UK (Mukadam et al 2023, Bothongo et al 2022), the Netherlands and the USA (Kornblith et al 2022). This may be because some of the risk factors for dementia are more common and have a greater impact in these groups than in the White population (Mukadam et al 2023).

People from minority ethnic groups in the UK are younger when they receive a diagnosis of dementia, indicating greater susceptibility. Their dementia is at a more advanced stage when they are diagnosed (Mukadam et al 2019) and they survive for a shorter time after diagnosis than their White counterparts (Mukadam et al 2023). People from diverse ethnic groups present later, at a younger age and with more depressive symptoms in the Netherlands. Barriers to accessing dementia care in minority ethnic groups include concerns about stigma, different explanations/views regarding symptoms, language proficiency and cultural norms in people with dementia and lack of tailoring of services (Nielsen et al 2020). A European survey of clinical dementia assessment centres found that diagnosing people from minority ethnic groups was considered challenging, often culturally validated assessment tools were not used (Franzen et al 2019) and there was a lack of culturally tailored services on offer (Nielsen et al 2011).

There are challenges to diagnosing dementia in a timely and accurate manner in people from diverse ethnic groups due to cultural, linguistic, and educational differences (Nielsen et al 2022, Tsai et al 2024). This is particularly difficult when literacy is limited (Maher, C., Calia, C. 2022)

People from diverse ethnic groups are often excluded from dementia drug and intervention trials (Franzen et al 2021)

Socio-economic status and place

People from more socioeconomically deprived areas have higher rates of dementia (Bothongo et al 2022) but have lower rates of accurate dementia diagnosis, being more likely to be diagnosed with unspecified dementia (Jitlal et al 2021).

Identification of dementia and therefore diagnosis rates (observed versus expected numbers of people with dementia) vary by region (NHS Digital dementia diagnosis rates) with rural areas underdiagnosing or diagnosing later in the illness than urban areas (Rahman et al. 2021). This paper highlights the many environmental and individual factors that contribute to these disparities.

Type of dementia

Rarer types of dementia take longer to diagnose (Leroy et al. 2021). Many people are not given a diagnosis of a specific type of dementia which means treatment and support cannot be as well tailored for these people than for others who received a more specific diagnosis.

Intellectual disability

Dementia is highly prevalent in people with Intellectual disabilities (ID) when compared to the general population, with research finding that it is almost five times higher (Strydom et al., 2013) and that people with Down’s syndrome having a 90% risk of developing dementia in their later years (McCarron et al., 2014). There are variations in how dementia presents, for example, with ID, dementia is likely to initially present with personality and behavioural changes, compared to the general population, where lapses in memory are often an initial symptom (MacDonald & Summers, 2020). The consequences of dementia for those with ID are marked in comparison to those without ID, where the development of dementia is associated with faster progression of the disease and elevated mortality rates for those with ID (Coppus et al., 2006).

In addition, there are significant complexities in diagnosing dementia for individuals with severe to profound ID due to factors such as limited baseline assessment tools. With no suitable benchmark for comparison due to ‘floor’ performance across all tests, it is difficult to establish any significant decline in functioning (McKenzie et al., 2018). Additionally, as individuals with dementia and ID may have limited verbal communication abilities, their subjective report of any changes are rarely considered (Smiley & Cooper, 2003). People with ID are often excluded from dementia research trials and rarely offered pharmacological and non-pharmacological interventions.

Other characteristics
 

There is very little research on whether the needs of LGBTQ+ people, those from different religions and those with disabilities, are being met by current services. One study found that Transgender and Non-Binary older adults reported high frequencies of subjective cognitive decline and discrimination in medical settings. Another study found no differences in same-sex and mixed-sex couples with regards to rates of cognitive impairment.