Pressure for beds in the NHS can sometimes mean diagnosis and treatment in care of the elderly can be overly focused on laboratory values and targets. If the patient’s electrolytes are in the correct ranges, the CRP and leukocytes do not show signs of infection and appropriate social support in place, patients are deemed fit for discharge.
There is less emphasis attached to how the patient feels. This is in part due to the impracticality of keeping patients in hospital until they feel they’re back at baseline. However, this means that for many older people, long-term symptoms of fatigue or breathlessness may not be followed up.
Survival of Covid-19, particularly in older people, is seen as a binary outcome: survival or death. Like many things in medicine, there are many shades of grey in-between. Over a year into the Covid-19 pandemic, it has become apparent individuals of all ages are living with ‘Long Covid’, a debilitating post-viral syndrome that there is still very little known about.
Younger individuals are more likely to seek answers for post-viral symptoms. With younger patients typically having fewer confounding comorbidities, they are more likely to be referred to specialists, find those with similar symptoms online and persist with seeking answers. Older individuals with ‘Long Covid’ are less likely to receive this support online and may attribute their chronic symptoms to simply growing older or their other health conditions.
The vaccination programme has given many hope for a return to normality, but for those who have already survived Covid-19, there is a significant proportion still living with chronic symptoms.
Case study of Long Covid in an older patient
Due to the ongoing Covid-19 pandemic, I spent a number of weeks during my care of the elderly placement in smaller rehabilitation hospitals. I met Mrs T, a 77-year-old lady who was initially admitted to a district general hospital (DGH) four months prior following a fall secondary to postural hypotension. She had spent eight hours on the floor, unable to get up and was eventually found by her daughter after concerns her mother had not responded to any text messages.
Mrs T has a poor recollection of the incident, her medical notes stated that her daughter had found her ‘confused and disorientated’.
She had not suffered any fractures from her fall despite a past medical history of osteoporosis, but was found to have developed rhabdomyolysis due to the time spent on the floor. Prior to the incident, Mrs T was scoring a 4 on the clinical frailty scale, able to live independently but at a slower pace than she had enjoyed earlier in her life.
Her only long-term health condition was asthma which had been well-managed in recent years. Like many others of her age, Mrs T had been staying mostly at home throughout the pandemic. While not formally instructed to shield, she exercised caution and only left her house for groceries and occasional walks around the block.
Mrs T had managed to avoid catching Covid-19 until her admission, despite many of her relatives and neighbours catching the virus in the past year. Towards the end of Mrs T’s second week in the DGH, when she was nearing discharge, there was an outbreak of Covid in her bay. Due to her initially minor symptoms, Mrs T was surprised to find she had tested positive. Her breathlessness and fatigue worsened each day until she was transferred to a high-dependency ward due to her oxygen saturations dropping below 75%.
Mrs T’s family were informed she was unlikely to be a candidate for ITU given the profound bed shortages during this Covid wave. She was trialled on non-invasive ventilation and 6mg OD dexamethasone, which helped keep her stable.
Three weeks after testing positive, she was transferred to the rehabilitation hospital. Despite surviving Covid, she now suffers from severe fatigue, myalgia, ‘brain fog’ and frequent exacerbations of her asthma for the past two months since catching the virus. She now finds mobilising and engaging with physiotherapy very difficult and would be unlikely to cope with the activities of daily living without significant support.
More than a year after the World Health Organisation declared SARS-CoV-2 a pandemic, over 2.5 million people worldwide have died from the virus.1 The over 65s have been particularly affected, with eight out 10 of all Covid-19 deaths in the US being found in this age group.2 Many previously fit and well older individuals have found their ceiling of care in hospital was far lower than it would have been ordinarily due to the limited availability of ICU beds and ventilators.
Almost as soon as the first few cases of Covid-19 were discovered, many survivors of the disease were left with persistent post-viral symptoms, which some described as being as debilitating as the virus itself. This post-Covid sequelae was termed colloquially as ‘Long Covid’ which is used interchangeably for any symptoms following the acute phase of the virus.
NICE defines post-Covid-19 syndrome as any signs or symptoms that are developed following Covid-19 infection and have not resolved 12-weeks after the initial infection.3
A Covid symptom app that collected data from 4,182 Covid patients found 13.3% had symptoms lasting more than 28 days. Amongst these patients, increasing age was significantly associated with frequency and severity of Long Covid symptoms.4 It is likely that older populations are under-represented in this study due to issues using a symptom app.
Many with symptoms will not have been admitted to hospital, received any rehabilitation, or reach the threshold of 12-weeks for further investigation so may be left without support for debilitating symptoms. A conservative estimate is around half of those with Long Covid symptoms will be undiagnosed.5
The symptom app has shown dyspnoea, fatigue and headache are the most common experienced symptoms of Long Covid. The report suggests a range of systems are affected, including gastrointestinal, neurological and respiratory.4
Long Covid has many similarities with the well-described Post-intensive care syndrome (PICS). PICS encompasses the long-term effects of critical illness including both mental and physical effects. This includes generalised weakness, impaired judgement and increased incidence of mental health conditions.6
The confounding difference with Long Covid is that PICS is seen exclusively in those that have been critically ill, particularly if they have been ventilated. Long Covid has a high prevalence in groups that have had asymptomatic Covid infections as well as those that have been critically ill. One study found 32% of those with symptoms at day 61 post-infection had asymptomatic infections.7 The true prevalence of initially asymptomatic ‘long-haulers’ may be underestimated and misdiagnosed with many unaware they were ever infected.
Even predating social media the internet has been seen as a positive tool for support and education for communities suffering from different illnesses.8 Long Covid exemplifies this, with it considered to be the first illness social media has played a part in defining, through those with the same symptoms sharing experiences, support and treatments.9
Facebook has a large community of Long Covid sufferers, with two of the biggest groups having 30,000 and 40,000 members respectively. However, there is a disparity in who has access to these support groups. In the UK, only 8.5% of Facebook users are over 65.10 The over 65s account for 18.5% of the UK population.11
Many older patients may not recognise the symptoms of Long Covid without the testimonies of others online and therefore are less likely to be diagnosed or benefit from the support of these communities.
A further factor preventing diagnosis in older patients is the potential for Long Covid’s systemic symptoms to be mistaken for other conditions common in the elderly. ‘Brain fog’, difficulties with cognition and fatigue are three of the most common symptoms of Long Covid.12 These symptoms can be easily confused for an initial presentation, or worsening of, dementia, depression or delirium.
For those that are correctly diagnosed with Long Covid, there is a disparity in access to these services based on geographical location. In the UK, some patients have been seen in clinic for Long Covid symptoms within days, while others have been waiting months.13
Summary of learning points
- Long Covid is a multi-system post-viral syndrome affecting around 13% of those previously infected with all ages affected.
- For a formal diagnosis, symptoms must be present for more than 12-weeks after initial infection.
- Many Long Covid patients will have asymptomatic infections leading to misdiagnosis and underestimation of prevalence.
- In the older population, Long Covid is less likely to be diagnosed due to its shared symptoms with other common conditions.
- Social media has provided an effective support network for Long Covid patients but is less likely to be utilised by elderly patients.
- There is currently no effective treatment for Long COVID and access to specialist services is limited by area.
In the earlier stages of the pandemic, surviving the acute stage of Covid-19 was seen as an arbitrary end point for which life could resume as normal. It is now clear that people of all ages, and of all degrees of prior health, can be affected by Long Covid.
After a slow start, progress is starting to be made setting up treatment pathways and assessing the scale of the Long Covid problem. However, there are no definitive treatments and there is a disparity of access to tertiary services across the UK.
In the absence of definitive treatments, support groups on social media have created a network of advice and reassurance for ‘long haulers’. Older people are less likely to benefit from this support than younger sufferers.
The common adage taught to medical students is that clinicians always consider the most likely diagnosis. With 4.5m cases of Covid-19 in the UK throughout the pandemic,14 there needs to be a re-evaluation of diagnostic thinking to consider Long COVID as an important differential in older patients.
The overlap of Long Covid symptoms with many common conditions seen in the older populations mean that the scale of the problem is likely to be underestimated. With these confounding factors and the lack of support younger generations benefit from, there is a risk Long Covid will become a hidden epidemic amongst the older generation.
This case study was highly commended in the Woodhouse Prize in Geriatric Medicine 2020-2021
Elliot Phillips, Fourth Year Medical Student
- WHO. WHO Coronavirus (COVID-19) Dashboard 2021 [Available from: https://covid19.who.int/.
- CDC. Older Adults: At greater risk of requiring hospitalization or dying if diagnosed with COVID-19 2021 [Available from: https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/older-adults.html.
- NICE. COVID-19 rapid guideline: managing the long-term effects of COVID-19 2020 [Available from: https://www.nice.org.uk/guidance/ng188.
- Sudre CH, Murray B, Varsavsky T, Graham MS, Penfold RS, Bowyer RC, et al. Attributes and predictors of Long-COVID: analysis of COVID cases and their symptoms collected by the Covid Symptoms Study App. medRxiv. 2020:2020.10.19.20214494.
- Greenhalgh T, Knight M, A’Court C, Buxton M, Husain L. Management of post-acute covid-19 in primary care. BMJ. 2020;370:m3026.
- Rawal G, Yadav S, Kumar R. Post-intensive Care Syndrome: an Overview. Journal of translational internal medicine. 2017;5(2):90-2.
- Huang Y, Pinto MD, Borelli JL, Mehrabadi MA, Abrihim H, Dutt N, et al. COVID Symptoms, Symptom Clusters, and Predictors for Becoming a Long-Hauler: Looking for Clarity in the Haze of the Pandemic. medRxiv. 2021:2021.03.03.21252086.
- White M, Dorman SM. Receiving social support online: implications for health education. Health Education Research. 2001;16(6):693-707.
- Callard F, Perego E. How and why patients made Long Covid. Social Science & Medicine. 2021;268:113426.
- Statista. Distribution of Facebook users in the United Kingdom as of April 2021, by age group 2021 [Available from: https://www.statista.com/statistics/1030055/facebook-users-united-kingdom/.
- ONS. Overview of the UK population: January 2021 2021 [Available from: https://www.ons.gov.uk/peoplepopulationandcommunity/populationandmigration/populationestimates/articles/overviewoftheukpopulation/january2021.
- Graham EL, Clark JR, Orban ZS, Lim PH, Szymanski AL, Taylor C, et al. Persistent neurologic symptoms and cognitive dysfunction in non-hospitalized Covid-19 "long haulers". Ann Clin Transl Neurol. 2021;8(5):1073-85.
- Sample I. Some long Covid sufferers in England waiting months for treatment: Guardian; 2021 [Available from: https://www.theguardian.com/world/2021/may/30/some-long-covid-sufferers-in-england-waiting-months-for-treatment.
- GOV.UK. Coronavirus (COVID-19) in the UK 2021 [Available from: https://coronavirus.data.gov.uk/details/cases.