Thousands of patients waiting for dementia diagnoses during Covid crisis

NHS figures for England show initial assessment and monitoring have both fallen sharply since the start of the pandemic

Experts have warned of backlogs of undiagnosed dementia cases and worsening standards of care after official figures revealed a collapse in assessing and monitoring patients in England during the pandemic.

NHS data shows the number of people who were assessed for dementia has fallen to less than half the level before the pandemic – 10,535 in February 2021 compared to 23,392 in February 2020.

In that time, the number of people receiving an initial memory assessment fell by two-thirds, while the number of referrals to memory clinics – which help diagnose dementia – fell by 42%.

Partly as a result, the total number of patients aged over 65 with a dementia diagnosis fell by just over 43,000 – a drop of 10%.

The pandemic has put huge strain on NHS staff and resources, often diverting them from other healthcare activities.

“When I talk to people with dementia, their families, the absolute lack of contact and support is very apparent, and accessing things like GPs has been a challenge,” said Paul Edwards, director of clinical services at Dementia UK.

“One of the big problems for us is this diagnostic backlog. We have got thousands of people waiting for diagnosis, which is a very difficult time obviously for families and people with dementia, but what we don’t know yet is exactly how the services are going to get those people through.”

Care monitoring of dementia patients who have already been diagnosed has also fallen sharply. The number of dementia patients who had received a medication review in the previous 12 months fell 55% between February 2020 and February 2021. Meanwhile, in February 2021 just 37% of dementia patients had received a care plan or annual care plan review in the previous 12 months, compared with 73% in February 2020.

Dementia care plans set out the sort of care that patients and their carers might need, while annual reviews help keep up with any changes in the patient’s condition.

“If you don’t review what’s going on in somebody’s care, the impact could be fairly severe,” said Edwards. “You’re not going to be on top of what’s going on for a person, and you might miss something that’s been bubbling away in the background – it might be a physical health issue or something that’s changed for the person with dementia in their behaviour, or something with the carer, where the carer’s starting to get even more worn out than usual. Both of those things can lead to hospital admissions, and we are all trying to avoid unnecessary hospital admissions.”

A medic wearing PPE prepares to remove a patient from an ambulance
Problems with dementia care can lead to extra pressure on hospital A&E departments. Photograph: Hollie Adams/Getty Images

Jill Davidson cares for her husband, Paul, who has a rare form of dementia. He last saw a consultant in January 2019 – a review due a year later never happened, possibly due to backlogs at the hospital, and then Covid struck. As services slowly resume, the earliest date now available for an appointment is in late June – two and a half years since his last one.

“My husband’s condition has moved on, so now I’m up two or three times a night changing bedding,” she told the Observer. He has also developed a fainting condition, culminating in an accident in March when he required treatment at A&E. “It’s definitely moved his dementia on because he had head trauma effectively and it’s now caused all sorts of other issues.”

Davidson, a member of Dementia Carers Count, has had to fight to get hospital appointments for her husband. “It’s all to do with the usual thing of those who shout loudest get heard. And of course the biggest problem for carers of dementia sufferers is the fact that you’re exhausted.”

Gavin Terry, head of policy at the Alzheimer’s Society, said: “People with dementia have been worst hit by the pandemic and their need for support has risen steeply as a result. But reduction in healthcare services has meant fewer people are getting a dementia diagnosis, so fewer care plans are being introduced, leaving people to struggle without the information and help they so desperately need.

“Now vaccines have been delivered to those in the highest priority groups, clinical commissioning groups must ensure care plan reviews [for people with dementia] are resumed as quickly and as safely as possible.”

An NHS spokesperson said: “It is not surprising that during the pandemic some older people will have deferred seeking help for slow onset symptoms such as memory loss, but anyone with concerns should come forward.

“Extra investment for mental health services recently announced means local health groups will receive an additional £17m to boost capacity within memory assessment services and ensure more people are diagnosed.”

Contributor

Chaminda Jayanetti

The GuardianTramp

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