Addressing Dementia Diagnosis: A Brief Overview for Dementia Action Week

Addressing Dementia Diagnosis: A Brief Overview for Dementia Action Week

Esra Hassan

The theme of this year’s Dementia Action Week (15^th – 21^st May 2023) is diagnosis. Currently, there are 900,000 people living with dementia in the United Kingdom. Dementia Action Week attempts to encourage everyone to act, challenge dementia stigma and promote understanding and awareness of dementia. In this overview, I touch on the diagnosis rates of dementia in England and UK and some of the barriers that hinder access to dementia diagnosis. There is also a consideration for how adolescents may slot into the topic of dementia despite being an over-looked age group in this research space.

Dementia is a term that encompasses a range of progressive conditions that affect the brain and characterized by a decline in cognitive ability and memory which affect a person’s daily functioning. Dementia can have a significant impact on memory, thinking, language and behaviour. There are several subtypes of dementia with Alzheimer’s disease and vascular dementia perhaps the more well-known types by the general public but each type has its own distinct characteristics and underlying causes.

Poignantly, dementia affects a significant proportion of the population with 34.5 million people knowing someone living with dementia in the UK and perhaps strikingly, given the projected increase in incidence, one in three of us born in the UK today will go on to develop dementia in our lifetime. However, diagnosis rates for dementia are relatively low with studies indicating that only two-thirds of people with dementia in England actually receive a formal diagnosis which leaves a significant gap in being able to identify people who require support and get appropriate care. There has been particular importance placed on dementia diagnosis since the COVID-19 pandemic further exacerbated the rate of under-diagnosis, lack of adequate support for people living with dementia and late presentation of dementia to healthcare services. The pandemic also affected people with dementia and their families in other ways with dementia accounting for a quarter of all COVID deaths in the UK. The priority for the UK is getting the diagnostic rates back up to the levels we had pre-pandemic.

There are populations who are more affected by under diagnosis and have greater barriers to accessing diagnosis and treatment. These include older adults. Whilst dementia predominantly affects older individuals (though important to highlight there is young on-set dementia where individuals are diagnosed much earlier), older adults often have difficulty in recognizing and reporting their cognitive symptoms. Another group includes minority ethnic communities where research highlights disparities in dementia diagnosis rates among different ethnic groups. Minority ethic communities may face additional barriers to accessing diagnosis and treatment such as having limited culturally appropriate healthcare services. Socioeconomic factors such as low income, limited education and living in deprived areas also can contribute to under diagnosis of dementia. Individuals who are socioeconomically disadvantaged may face challenges in accessing healthcare services such as specialist clinics or dementia assessments due to financial constraints or geographical limitations. Lastly, in rural communities, there can often be limited healthcare infrastructure and resources compared to urban areas which lead to longer waiting times for appointments, limited availability of specialists and reduced accessibility to diagnostic services which lead to under diagnosis of dementia. For example, the lack of access to critical brain imaging to aid diagnosis often leads to delays which can take a diagnosis several months to make. Novel diagnostics and early detection tools are certainly a hot topic. We hope to see new diagnosis tools in the next 5-10 years disseminated into memory clinics where a more rapid diagnostic aid may help detect specific dementias such as Alzheimer’s Disease earlier and quicker.

There are several barriers that contribute to the low diagnosis rates of dementia in England. Just some of these barriers include lack of awareness about dementia and its symptoms which lead to late recognition of symptoms and timely intervention. For example, memory loss and cognitive decline are often falsely assumed to be a normal part of ageing which lead to overlooking potential signs of dementia. Another barrier includes a lack of knowledge and understanding dementia even among healthcare professionals which can lead to misdiagnosis as well as delayed diagnosis. Lastly, dementia stigma and discrimination remain a huge societal barrier that prevents an individual from seeking timely diagnosis and support. The fear of discrimination from others often leads to individuals feeling hesitant to discuss their concerns with family members and friends or pursuing a diagnosis. The World Health Organization (WHO) recognises the global impact of dementia from all these perspectives and outlined a priority area that specifically focuses on the critical role of raising dementia awareness to address this.

To address under diagnosis of dementia, there is a need to have a multifaceted approach. This includes raising public awareness about dementia symptoms, its risk factors and knowing the benefits of early diagnosis is critical. There is a need for educational campaigns that are not just ‘a one size fits all’ approach that can help various communities in the population recognize the signs of dementia and encourage timely help-seeking behaviours. This would be achieved by adapting resources and taking a more personalised approach. Moreover, there is a need to ensure equitable access to dementia diagnostic services. However, it perhaps seems to big an ask to get to this stage given the current mammoth task in trying to reduce waiting times in general and expand service capacity particularly in the NHS, with chronic under funding and redundant vacancies a continuous issue.

I would also like to draw attention to an under-researched but equally important group in the population that dementia may impact and this is young people (under the age of 18 years old). It is estimated that there are thousands of young carers in the UK who provide care and support for family members living with dementia in some capacity. These caring responsibilities include managing medications to assisting with daily activities for family members living with dementia. We should not underestimate the role of community engagement with these populations in increasing dementia awareness given that adolescents are in a good position to recognize signs of dementia and encourage family members to seek timely diagnosis. This can be a particularly useful in adolescents reaching communities where English is not a first language through knowledge transmission into their home. For example, in some cultures, the term dementia does not exist and so it can be difficult for individuals to identify the symptoms they are experiencing which would allow them to seek early diagnosis and treatment.

To conclude, raising awareness and understanding of dementia is just one catalyst for getting people to recognise their symptoms and seek early diagnosis. Adolescents already have some experience of dementia and so we should keep them in equal mind to adults given that they are the future policy makers, healthcare providers and carers and they may be useful in transmitting knowledge into the home.

Author: Esra Hassan, BSc (Hons), MSc, GMBPsS

Alzheimer’s Society UK funded [grant: 545] Year 2 PhD at Brighton and Sussex Medical School, Centre for Dementia Studies, Department of Neuroscience