Blog – Understanding Inequalities in Dementia

Dementia is an umbrella term to describe a condition where a person experiences acquired cognitive decline, accompanied by functional impairment. It is caused by a number of disease processes in the brain and the symptoms can vary from person to person. Dementia can cause difficulties for the person living with dementia as well as their family and friends and it is associated with large health and social care costs.

As with any condition, it is important that dementia is diagnosed in an accurate and timely manner. Being diagnosed earlier in the illness can mean that the person with dementia and their family get the support that they need and can plan for the future. Support and care after a diagnosis are also important, and these should be tailored to the needs of the person living with dementia.

Unfortunately, there are a number of inequalities in dementia that mean that not everyone gets the same standard of diagnosis and care. Inequalities exist relating to the age and sex of the person with dementia, their ethnicity, socioeconomic status, sexuality, type of dementia, religion, and presence of disabilities. These can be inequalities in dementia prevention, diagnosis, post-diagnostic support and research participation. This blog is dedicated to highlighting inequalities, as well as some of the excellent work being done to counteract these. This site is not intended to be a source of support or advice for someone who has dementia or is supporting someone with dementia. If you need advice and support, please consider the Alzheimer’s Society website or Alzheimer’s Research UK or similar organisations in your home country.

If you know of any work that has not been highlighted here but should be, please contact Professor Naaheed Mukadam on n.mukadam@ucl.ac.uk

If you would like to support Professor Mukadam’s work on dementia inequalities at UCL, you can donate via UCL’s Give Now page: https://tinyurl.com/4stf5axv

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).

Socioeconomic 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 disabilities

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 protected 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.

Interventions to address inequalities

Dementia awareness: Moving pictures and the National Ageing Research Institute in Australia have collated numerous resources providing information on dementia in a variety of languages. The Alzheimer’s Society adapted an information programme for South Asian carers which increased understanding of dementia and support available and improved understanding of the person with dementia. The ADAPT study collated resources for South Asian people with dementia in the UK. The iSupport educational programme is also being adapted for people from South Asian backgrounds. A feasibility study of a culturally tailored dementia information programme for people from minority ethnic groups showed an improvement in knowledge and beliefs around dementia in a study from Denmark (Nielsen et al 2022). Awareness raising has been done through roadshows and music and dance initiatives to help de-stigmatise dementia in minority ethnic communities.

Help seeking: There are interventions that have shown promise in encouraging people from minority ethnic groups to seek help for dementia earlier such as The East-Dem study in the South Asian community and IDEM-Care study in the Black community.

Cognitive testing: A number of studies have been done to improve cultural sensitivity of cognitive screening tools and some more culturally sensitive cognitive screening tools are the Copenhagen cross-linguistic naming test, The Rowland Universal Dementia Assessment Scale, the brief Multicultural Cognitive Examination, The Cross-Cultural Dementia Screening (CCD), The Naming Assessment in Multicultural Europe (NAME), the five digit test, the Visual Short-Term Memory Binding Test (VSTMBT), the Visual Association Memory test and the European Cross-Cultural Neuropsychological Test Battery (CNTB). Diagnostic quality is improved if informant-based questionnaire is combined with the RUDAS as shown in one study.

Post-diagnostic support: Some organisations offer culturally tailored support after a diagnosis such as Meri Yaadein, and Sahara – a service through the Alzheimer’s Society for South Asian communities.

There has been cultural adaptation and translation of Cognitive Stimulation Therapy (CST) which is proven to improve cognition in people with dementia. The START intervention, a cost effective therapy which helps to support carers and prevents depression has been adapted for use in the South Asian and Black communities in the UK.

A culturally tailored dementia care intervention pilot study in people from minority ethnic groups in Denmark showed promising results in improving family carers’ sense of competence by helping them cope better with the challenges of the caring role (Nielsen et al 2022).

A UCL team has recently completed the adaptation and evaluation of CST, an evidence-based treatment for dementia, in people with ID and dementia (research protocol)

Overall, we can see that a number of inequalities exist in dementia diagnosis and care. Some progress has been made in identifying and addressing these but we still have a long way to go before equality can be achieved.

Professor Naaheed Mukadam

Author

Naaheed Mukadam trained as a psychiatrist and is now Professor of Dementia Studies at UCL. She researches inequalities in dementia diagnosis, treatment and care, while also working as a consultant psychiatrist. Outside work, she sings, reads, and collects more books than she probably needs.

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