Dementia misdiagnosis: identifying people at risk of being missed

GP and memory assessment services have been curtailed by COVID-19 leading to a patient backlog, but the need for further staff dementia training is recognised

• The effect of the COVID-19 pandemic on dementia diagnosis rates has been catastrophic
• Assessments have plunged, leaving a backlog that makes it hard for some to access vital support
• Despite best efforts of services, some older people who are developing dementia may be missed

The effect of the COVID-19 pandemic on dementia diagnosis rates has been catastrophic.

GP assessments of patients with early signs of dementia fell in the year to May 2021 by nearly 40% compared with the previous year says the Alzheimer’s Society.

Assessments undertaken by memory services reduced by 50% in the same period. The backlog in diagnosis means it has become difficult for some with dementia to unlock the vital support they need to live well.

Although the situation is improving, memory assessment services continue to struggle to meet demand and some have taken a long time to reopen after staff were redeployed.

‘Some memory staff were diverted because it wasn’t seen as a priority. The worry now is that there’s a cohort of people we risk losing sight of’

Rachel Thompson, consultant Admiral Nurse and Lewy body dementia specialist

The current suspension of annual health checks for people aged over 75 – as GP surgeries focus on the COVID-19 vaccine booster programme – means another opportunity to detect early signs of dementia may be lost.

When coronavirus hit, memory services ground to a halt

Even before the pandemic, memory services were showing inconsistency in the care and support they offered patients. A 2019 national audit of England’s 215 services said the variations were marked and were apparent in almost every aspect of the memory service pathway, ‘from assessment practices to the choice of investigations, to the final diagnosis and access to treatment and support’.

• RELATED: Using video consultations to support family carers of people living with dementia

Then, when coronavirus hit, like most other areas of specialist care, memory services ground to a halt.

Consultant Admiral Nurse and Lewy body dementia specialist Rachel Thompson says: ‘Some memory staff were diverted because it wasn’t seen as a priority. The worry now is that there’s a cohort of people we risk losing sight of.’

Before coronavirus, dementia was to some extent moving out of the shadows and becoming a subject of national debate.

Consultant nurse in dementia and delirium Jo James, who chairs the RCN Older People’s Forum, says: ‘We were doing so fantastically well improving dementia care across the board.’

Ms Thompson agrees, saying: ‘We had created a very welcome increase in awareness of the value of diagnosis.’

Public campaigns and investment in dementia care, supported by government, helped highlight the importance of skilling up the workforce and developing specialist services, Ms Thompson explains. ‘And primary care was getting better about referring people on.’

For some older people a reliance on technology and virtual appointments can be problematic

That said, some patients fared better than others. Those presenting with an atypical form of dementia were less likely to be passed on to specialist services compared with patients with Alzheimer’s, where disease progression may be slowed by medication.

Now, where memory assessment services have begun operating again, they and their patients have had to rely a lot more on technology and virtual appointments than was the case pre-pandemic. For some older people that can be problematic.

• RELATED: Admiral Nurses in the community: helping carers cope with the uncertainty of dementia

The Office for National Statistics says that in 2020, 99% of UK adults aged 16 to 44 were recent internet users. But for those aged over 75 the figure dropped to 54%. So despite the best efforts of memory assessment services to be innovative in the way they connect with patients, a proportion of older people who are developing dementia may be missed.

Others at particular risk include people without close family who might pick up on cognitive changes and those who have become isolated as a result of COVID-19 restrictions.

Isolation means that neighbours may no longer be in a position to identify that someone living nearby is struggling. ‘That kind of community awareness is reduced,’ says Ms Thompson.

‘Things that were really strong in hospitals like pain management and dementia, eating and drinking, all the things we’ve pushed for for years and years, fell by the wayside a little because everyone was in major incident mode’

Jo James, consultant nurse in dementia and delirium

Although a diagnosis of dementia usually brings better access to specialist care, it offers no protection against the brutal reality of coronavirus.

When someone is acutely ill and taken away from a loved one, it’s hard for them to cope

Ms James, who works at Imperial College Healthcare NHS Trust, says anyone with dementia who has needed acute hospital care during the pandemic has had a particularly challenging time.

‘Things that were really strong in hospitals – and I’ve talked to a lot of colleagues and all have said this – things like pain management and dementia, eating and drinking, all the things we’ve pushed for for years and years, fell by the wayside a little because everyone was in major incident mode.’

Personal protective equipment worn by staff had the potential to add to patients’ confusion, and carers and family were commonly barred from visiting.

‘There were real issues with people being unable to understand the context of what was happening. And when someone’s acutely ill and you take away from them a loved one, it’s so hard for them to cope.’

She adds: ‘We were lucky at Imperial in that our board came out very strongly and said this is important – individual carers and family members should be let in and be able to support their person with dementia.’

Susan Drayton, clinical lead and head of the Admiral Nurse helpline run by Dementia UK, says the net effect of all the current pressures on specialist services is that more callers to the helpline are in crisis.

A dementia diagnosis is not helpful if there is no appropriate care and support to follow

The helpline is always in demand. In 2021, calls numbered about 27,000 – more than 2,000 a month. The numbers are rising year on year and, says Ms Drayton, callers’ concerns are becoming increasingly complex as carers struggle to cope.

‘Before, yes, the calls were complex but now families are calling us needing services yesterday or saying: “I’m at absolute crisis”.’

The slowdown in assessments by specialist dementia services has led to family doctors undertaking assessments themselves, Ms Drayton says. ‘We’re finding that sometimes GPs think the waiting list is so long there’s no point in sending someone to the dementia clinic,’ she says.

But diagnosing dementia is a specialist area. ‘It needs a specialist assessment, a dedicated professional who understands all the signs, symptoms and treatments for this group of illnesses.’

And a diagnosis is not helpful if appropriate care and support do not follow. Ms Drayton offers a comparison between dementia and cancer. With cancer, there are systems in place to prepare someone for diagnosis, and afterwards follow-up and support are arranged.

The complexities of supporting people with dementia

John is aged 67 and working towards retirement. He continues to hold down an office job but his colleagues have noticed that these days he is often late for work and sometimes sends emails that include bizarre content.

His wife has also noticed changes. He misplaces things and recently got lost while driving locally. At first, she put it down to stress but is increasingly concerned.

Eventually, referred by his GP, he agrees to attend a memory service and is diagnosed with vascular dementia. He has a history of high blood pressure and heart valve issues.

The memory service refers him back to the GP, who tries to treat his physical health problems. But John won’t take his blood pressure medication because he thinks there is nothing wrong with him.

There is often a lot to unravel while trying to offer support

Meanwhile, he has been sacked from his job because he is not coping and there is no money coming in. His wife is struggling to manage John as his behaviour changes. The couple live in a remote area with few support services, which have been depleted by the pandemic. Their adult children live abroad.

Desperate, she telephones Dementia UK’s Admiral Nurse helpline. Susan Drayton, who heads the helpline, says ‘John’ is a composite typical of the cases the service hears about. But he demonstrates the complexities involved in supporting people with dementia. There’s often a lot to unravel, she adds.

Financial issues are common. For example, John’s wife may suddenly have to get to grips with family finances if to that point he has controlled them.

There may be physical frailties to consider, with John neglecting his health or hygiene but not allowing anyone in the house who may help. Relationship issues may emerge, especially if John has in the past been controlling or abusive.

‘I would want to know what John’s wife wants,’ Ms Drayton says. ‘We shouldn’t assume that just because you are a wife or partner of someone with dementia you anticipated, or want to go on, this journey.’

‘You wouldn’t expect a GP to diagnose cancer and then leave you to it, out in the cold.’ But that can happen to some people with dementia, she says.

Unpicking all the sensitive issues that can arise in a call to the helpline is skilled work and, given the challenges callers face it can be difficult to encourage optimism, Ms Drayton says.

Priority is to focus on preventing crises and to ensure sudden cognitive changes are investigated

‘We want to give some hope that, okay, this is a long-term condition but there are things we can do to support this person and these are the services that are available. But it’s getting harder and harder.’

• RELATED: Community nursing: tackling long-term effects of COVID-19 on older people living with frailty

Are there reasons to expect that things might improve when coronavirus is finally brought under control? Ms Thompson says the priority for now is to maintain a focus on preventing crises, making sure that any sudden cognitive changes are investigated.

She sees some grounds for optimism, however. For example, the awareness of dementia and the support available that was growing pre-pandemic could be rekindled.

Ms James also believes that at some point, dementia assessment and care will make up some of the ground lost in the past two years. She points to a cautious return to face-to-face training sessions on dementia at her trust.

The effects of the pandemic on people with dementia has made staff realise there is a need for more training

‘We’ve always struggled in the acute setting to fill study days, but now people desperately want to talk about dementia.’

• RELATED: COVID-19 vaccine consent and dementia: implications and advice

The effect of the pandemic on people with the condition, or with delirium or confusion, has made staff realise there is a need for such training, she suggests.

‘We’ve got a real shot at riding that wave of interest and righting things. But we need to be proactive, get dementia out there again and not give up – keep telling people it’s important. Then we’ve got a chance of turning it back round.’

How to spot the early signs of dementia

Nurses who are not specialists in dementia can still be alert to signs that a patient may be experiencing early signs of the disease.

Look for behaviour that needs prompting, for example an inpatient who needs reminding to eat their breakfast or drink their tea

Listen closely to the person’s language. They might manage pleasantries about the weather or how they’re feeling, but a longer conversation could reveal lapses. ‘You might see a pattern of repetitiveness or forgetfulness,’ says Susan Drayton, head of Dementia UK’s Admiral Nurse helpline

Low mood can indicate a degree of insight into growing problems with forgetfulness
Look for problems with coordination or spatial awareness – lifting a glass to the cheek rather than the mouth, for example

Take a history. Involve the family to help identify behaviour that is out of character. ‘Families are hugely important because if you’ve never met someone before, you don’t know initially whether this is a new problem or something that was pre-existing,’ says Dementia UK consultant Admiral Nurse Rachel Thompson

• Consider other causes. Could the patient be experiencing delirium or depression rather than dementia?
• The National Institute for Health and Care Excellence offers guidance on how to assess someone with suspected dementia

Daniel Allen is a health journalist

Find out more

• Alzheimer’s Society (2021) Dementia Diagnosis Rates Drop During Pandemic
• National Institute for Health and Care Excellence (2021) How Should I Assess a Person with Suspected Dementia?
• NHS London Clinical Networks (2020) The 2019 National Memory Service Audit