Diagnosis of dementia: the impact of COVID-19

Dementia UK’s head of research and publications, Dr Karen Harrison Dening, discusses her thoughts on diagnosing dementia and the impact of COVID-19 on this.

The number of people aged 65 and over in the UK is expected to rise to nearly 21% by 2027 (1). As the population ages, the number of people with age-related conditions, such as dementia, will also increase, and this figure is projected to rise to over 1.5 million people in the UK by 2040 (2 ).

A timely diagnosis of dementia

Getting a timely diagnosis of dementia hasn’t always been easy. The 2009 UK National Dementia Strategy identified several areas that needed urgent attention from health and social care and set 17 goals to improve the lives of families affected by dementia. One goal was to improve diagnostic dementia rates. At the time of consultation and looking for evidence to prepare the strategy, only one third of people with possible dementia had actually received a formal diagnosis. Equally concerning was the huge variation in rates between locations with a 24-fold variation in rates between the highest and lowest numbers of people diagnosed from locations across the UK. Equally troubling was when a formal diagnosis was made, which often occurred late in the condition or at the point of a crisis when opportunities to prevent harm to families and increase their quality of life had passed.

In clinical practice, before the dementia strategy was launched, it was not uncommon to see a case presented to a ‘fast track’ ongoing healthcare funding panel, i.e. an urgent application for end of life care funding. , of a person in advanced stages of undiagnosed dementia. This meant that their needs for care and support, as well as their family members, were not supported during their condition. This is not a state of affairs we would like to review. A lack of diagnosis, or a late diagnosis, denies many possibilities for families with dementia. They are unable to make informed plans for their future and lack access to the help and support a diagnosis should provide. This includes receiving information, advice and treatment (social and psychological, as well as pharmacological), which can all improve their quality of life. A timely diagnosis of dementia can lead to several benefits, including access to a path of care and a network of services. The UK’s first dementia strategy in 2009 had a significant impact in improving diagnostic rates of dementia and enabling families to have better access to much needed post-diagnostic support.

The impact of COVID-19 on the diagnosis of dementia

However, the effects of the COVID-19 pandemic had a severe and negative effect on the diagnosis of dementia, significantly impacting the activity of memory assessment services. This has led to longer waiting lists for clinic appointments. As a result, there has been a steady decline in dementia diagnosis rates in England, dropping from 67.6% in February 2020 to 63.2% in July 2020, which is below the national target of 66.7% ( 3). While this 4% may not seem like such a troubling statistic, with around 850,000 people with dementia in the UK (2), this represents over 30,000 people who would have been diagnosed. This means that many families with possible dementia are in limbo and unable to plan their future.

Clinical waiting statistics are difficult to obtain, but anecdotally, clinics can have several hundred people waiting for an evaluation, with a wait time of a year or more. Waiting too long for a memory assessment makes no sense if it is a timely diagnosis we wish to offer. It remembers too much the timing of the pre-dementia strategy. However, as the pandemic develops in a second wave and local blockages become widespread, delays in memory evaluation and diagnoses of dementia can become even more exacerbated.

Memory Assessment Services are now starting to address the situation before it gets worse. They have turned to telemedicine, such as video consultations and telephone help lines to provide remote assessments of patients with suspected dementia. These are acceptable ways to assess memory problems, often used in large rural areas, such as the Australian outback and the expanses of Canada. However, not all people have access to or are confident in using the technology. Likewise, not only video conferencing or smartphone apps, but also the humble phone, can be used for follow-up visits and support for people with dementia and caregivers, and to monitor any changes in the person. This also requires training and practice for clinicians to become fully familiar with clinical practice and remote support.

Distance counseling is likely to continue to be offered in the future as it may be preferred in some cases by people with dementia and their families, for example, families can avoid travel and hassle with hospital car parking . It also opens up the possibility for those services that have adapted to the pandemic by extending their geographic reach. Traditionally, services have prided themselves on serving local populations and local primary care physicians and connecting with social services provided locally. However, remote consultation makes it much less important where people with dementia and their families are located. There is no reason why memory assessments cannot be performed in different locations, as long as there is access to local investigations, such as scans.

The future of dementia diagnosis

In the future, memory services may not be limited by geography when performed remotely. This could even remove the backlog in memory assessments which has now increased significantly due to COVID-19. Families with dementia urgently need more clarity and faster treatment, for example, a situation where the person performing the assessment is based in Essex while the person in need is based in Warrington could be the way to achieve this.

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