Alzheimer’s Society comment on how coronavirus is affecting dementia assessment and diagnosis

Coronavirus (COVID-19) has led to significant changes in the way that routine health and care activity is delivered.

This has had, and will continue to have, an impact on dementia diagnosis and assessment. There has been a significant decrease in dementia diagnosis rates, from 67.6 per cent in February 2020 to 63.5 per cent in June 2020.

This means that more people with dementia are living without a diagnosis, unable to access emotional, practical, legal and financial advice, as well as vital support services and pharmacological and non-pharmacological interventions. These things are even more important at a time when symptoms may be worsened by social distancing and closure of community services.

Ensuring access to a dementia diagnosis must be a central consideration of primary and secondary care as we move forwards.

A sustained and continued decrease in diagnosis rates, below the national target of two-thirds (66.7 per cent), cannot continue. 

If no action is taken to prioritise access to a diagnosis, we risk losing all the progress made over recent years in reaching and maintaining the national target of two thirds of people living with dementia receiving a diagnosis. We also risk losing the ability to improve beyond that target.

Our key concerns

Primary care 

Recent data shows a sharp drop in the number of referrals to memory services. There are usually on average 2,600 referrals from primary care to memory clinics per month, yet data from April showed only 84, May 435 and June 994.

While this is slowly starting to rise, a sustained and proactive effort must be made to support access to a timely diagnosis.

We have the following concerns:

• Access to services. People might avoid accessing services due to fear of contracting COVID-19 or being a burden on the NHS. This is compounded by the fact that people over 70, a population at higher risk of dementia, are being deterred from face-to-face assessments due to social distancing measures. This will also impact on the ability of GPs to spot the signs of dementia when patients access services for other reasons. 
• Quality of initial assessment. Remote management of patients at general practice level risks acting as a deterrent, as we know that older people generally have lower levels of digital literacy and are less likely to have access to the internet. They are also very likely to be living with both cognitive and sensory impairments that can make remote consultation more challenging. We are also concerned about the quality of initial assessment for remote consultations. This is because initial assessment may sometimes require a physical assessment and blood tests. 
• Prioritisation of patients. During the peak of the pandemic, guidance from the Royal College of General Practitioners assigned a lower level of priority to routine non-urgent primary care. This included new patient checks, NHS health checks, medication reviews, and over 75s’ annual reviews. These opportunities can be helpful to identify possible dementia, yet it is unknown to what extent services around the country have now returned to normal. We are also concerned that staff capacity at primary care level, due to sickness or shielding, will mean that patients with possible dementia are deprioritised in favour of those with more urgent health concerns. 

Memory assessment services 

Before the pandemic, there were already long waiting times for a diagnosis in some localities. Data from 2019 showed waiting times from referral to diagnosis varied from three to 34 weeks. Due to a reduction in services, there is likely to be growing waiting lists within memory services. 

We have the following concerns:

• Service availability. At the peak of the pandemic there was significant variation in whether memory assessment services were open or closed, and what service they were offering, such as virtual assessments or just existing supporting caseloads. We are still concerned about the reported variation between memory services and the knock-on impact this has on GP referrals and patient access to the right care and support. 
• Equality of access. While virtual assessments have improved access to care for some people, moving towards a virtual approach risks exacerbating inequalities and excluding cohorts of patients. We are aware of some memory services only offering virtual assessments and are extremely concerned that such a one-size-fit-all approach will prevent people from accessing a diagnosis. While the impact of delivering diagnoses remotely should not be underestimated, it is still critical that people can receive a diagnosis and access post-diagnostic support. 
• Lengthy waiting lists. There will be growing waiting lists not only because of delays in people accessing healthcare, but also because it takes longer to prepare and conduct virtual assessments. We are concerned about the lack of strategy for how memory services will handle their backlogs and the surge for imaging and other diagnostic services. There is also uncertainty regarding how people who are waiting for assessment and diagnosis will be supported, particularly given present circumstances where people may struggle to cope with their symptoms in the absence of pre-COVID levels of community care and support. 
• Complex cases and subtype diagnoses. Without a full and comprehensive assessment there may be an increase in the diagnosis of ‘unspecified dementia’. Receiving an accurate diagnosis of dementia subtype is critical to good management of symptoms and must not be deprioritised in the face of backlogs.
• Lack of post-diagnostic support for people newly diagnosed with dementia and their partners. A review of our online community, Talking Point, indicates instances of depression, denial and carer burden due to inability to access medication, as well as non-pharmacological interventions.

Our recommendations

Every person with dementia should have access to a diagnosis and post-diagnostic support.

We are calling for:

• Access to services. People should feel able to contact their GP if they are worried about their memory or other cognitive symptoms. Routine screening, such as NHS health checks and medication reviews, need to be re-prioritised to avoid missing opportunities to identify patients with dementia who may otherwise not approach health services about their symptoms.
• Proactive case finding. Memory services and primary care should work together to proactively identify people at risk of dementia. This must include working with social prescribers and the voluntary sector to ensure concerns are raised about people who might be exhibiting symptoms. 
• Ensuring clear communications. There needs to be clear local communication to primary care about what memory assessment services are open, or when memory services will be open, to enable primary care to make appropriate referrals. This should be accompanied by information about their service offering to ensure a smooth referral process. It is crucial that people can receive the right information on how they can access an assessment. 
• Delivering person-centred services. As memory services start to work through their backlog, they should take steps to ensure that patients with poorer access to technology are not excluded from accessing a diagnosis. It should be handled remotely where possible, or face to face with the correct PPE where the benefit of an assessment and diagnosis outweighs the risks of a face to face appointment. 
• Combatting growing waiting lists. There should be publication of regular, accurate data on memory service waiting times to assess demand and delays to diagnosis. In the case of lengthy waiting lists, there must be a clear offer of ongoing support to people with obvious cognitive symptoms. 
• Delivering a diagnosis. People with a provisional diagnosis of dementia should be invited to return as soon as possible for a face-to-face appointment to confirm the diagnosis and discuss their preferred treatment and support options. Strategies must be put in place to enable access to imaging and other diagnostic services to resume as quickly as possible.
• Access to post-diagnostic support. Services must ensure adequate provision of post-diagnostic support and share best practice on innovative delivery mechanisms. At the point of diagnosis, everyone should be given an emergency point of contact. 

Further reading:

• NHS Digital - Recorded Dementia Diagnoses
• NICE Guidance - Dementia: assessment, management and support for people living with dementia and their carers
• RCGP (PDF) - Guidance on workload prioritisation during COVID-19
• NHS England (PDF) - The 2019 National Memory Service Audit
• Care Quality Commission - Focus on primary care
• GOV.UK - Internet use: Ethnicity facts and figures