COVID blog #4: A-typical Presentation of COVID-19 in People Living with Dementia

As the COVID-19 pandemic continues to dominate both the media and healthcare settings, we are starting to learn more about the challenges of identifying COVID-19 in people living with dementia. Dementia rarely travels alone; most people living with dementia also live with multiple other health conditions. Consequently, many people with dementia fall within identified ‘at risk’ groups because of their age and co-morbidities. In the UK, the current triage for COVID-19 is based on the presence of fever, cough, shortness of breath and fatigue; however, in this blog we share our experiences of how people living with dementia may have a-typical presentations of COVID-19. We highlight the importance of clinical intuition and the need for vigilance, in particular regarding subtle changes that might otherwise be overlooked in busy, overloaded care environments.

Our Experience

We work within an acute older adult inpatient unit for people with dementia and other organic presentations. The unit provides hospital-based care and assessment for those in who are unable to be supported at home or in the community effectively or safely. Many of the people that we support have significant impairments in communication, in combination with  struggles with orientation and some level of agitation or distress. Difficulties in communication can make it more difficult for staff to identify subtle changes in presentation as indicators of pain and other unmet needs. In addition to this, there are new challenges to our usual methods of communication with the people that we care for. The use of touch is a fundamental part of our work on the ward, both on a practical level in terms of assisting with personal cares but also on a relational level through offering reassurance and comfort. Similarly, we recognise the importance of non-verbal communication, and in particular facial expressions are a crucial part of communicating on the ward. The introduction of PPE, especially masks, makes the difficult task of communicating effectively with our patients  even more of a challenge.

The discussed importance and necessity for touch, along with our patients’ memory impairments, make implementing social distancing measures in this setting difficult – especially as they often feel contrary to the delivery of person centred care. However, this also increases the risk of transmitting the virus. Additionally, the regular use of pain relief such as paracetamol can potentially mask any high temperature. Therefore, the combination of these factors makes the timely diagnosis of COVID-19 particularly important in these settings.

As a ward, our current experience of COVID-19 presentation in our population has included neither a high temperature nor new, continuous cough. Whilst some people experienced physical symptoms, such as vomiting or feelings of nausea, this has not been the case with everyone. However, we have identified common themes / presentations and stages amongst our patients which are summarised below:

  1. A significant reduction in food intake just under a week prior to testing. In some instances, this has reduced to a food intake of nil.
  2. An increase in time spent either sleeping or resting in bed. This has also included time spent sleeping in public areas, which would have otherwise been very out of characte
  3. An increase in confusion and agitation, including both physical and verbal aggression. This has included periods of being restless, such as struggling to sleep and being unsettled throughout the night. This period has also shown increase in bizarre and out of character behaviours, such as taking clothes off in public areas; shouting out; and making animal noi

Set out as they are above, these may seem like stark changes. However, in a pressured environment they can be overlooked all too easily.

Such changes highlight the role of clinical judgement in the current climate – especially in circumstances where teams are very familiar with their client group. This information provides an argument for timely testing based on this judgement, which would potentially allow for more successful treatment and also minimise the spread of the virus. For those in care settings who do not already do so, it indicates that the use of simple recorded observations such as food, sleep and behaviour charts can provide data to support these judgements by documenting these changes.

Below we share three case examples (with permission) to demonstrate changes in presentation we observed in people with dementia on an acute mental health ward prior to testing positive for COVID-19.

Case examples Patient 1

Patient 1 is an 88-year-old lady. Overall, she has been in good physical health throughout her life, though she has becoming increasingly frail with age and has a long history of being a heavy smoker. Typically she is very active on the ward, often in search of family members. On the whole, she engages well with staff and is very affectionate and tactile towards others. However, as the day goes on she can become more irritable and confrontational. She was observed on the ward to have a regular sleep pattern. She also has a mostly regular food intake consisting of 3 meals a day.

In the week prior to testing positive for COVID-19, numerous changes were observed. This started with an initial significant reduction in food intake where she declined her evening meal twice, and on one day ate a small amount of lunch and on the other declined lunch entirely. The day following this, she was observed to be sleeping during the daytime which was very out of character. Staff then observed a 2-day period of a noticeable increase in agitation and confusion, with more periods of irritability and pacing the ward. This also included being very restless during the night, going in and out of her room appearing much more disorientated (such as believing she was on holiday), struggling with language comprehension and being unable to settle. In the day after this, staff reported an increase in out-of-character behaviours – removing her clothing in public areas, for instance. Finally, on the day prior to testing positive, she was observed to be sleeping for large amounts throughout the day. This included sleeping in public areas which was especially out of character.

Patient 2

Patient 2 is a 67-year-old man. He has had lifelong asthma but no other significant health history. His presentation on the ward fluctuates and appears cyclic at times – including periods of being very lucid and engaging, but also periods of unusual behaviours (such as invading the space of others and appearing catatonic at times). He spends the majority of his waking time in public areas. His sleep pattern was very consistent but with some periods of not sleeping during the night. He has a mostly regular food intake of 3 meals a day, although has declined meals on occasion.

Similarly to Patient 1, in the week prior to testing positive, numerous changes were observed. This began with a reduction in food intake where he declined his evening meal 3 times within 4 days. Following this, there was a large increase in the amount of time spent in his room during the day, which was very out of character. During the days prior to testing positive, there was a noticeable increase in restlessness and inability to settle despite spending the majority of the day in his room. This coincided with an increase in agitation – including shouting out, banging doors, throwing drinks and on one occasion banging his head against the wall. There was also an emergence of bizarre behaviours, such as barking and making other animal sounds. He also spent time sleeping in public areas which is especially out of character.

Patient 3

Patient 3 was an 85-year-old man. Throughout his working life, he had been in good physical health. However, since retirement he had been diagnosed with multiple different types of cancer – including bladder, lung and oesophagus cancers – and he also had a significant stroke in 2019. His usual presentation involved spending a large amount of time in his room; however he enjoyed engaging in conversation with staff and would sometimes sit in public areas with others. He was overall a very reserved and caring man. His sleep pattern was generally regular. His food and fluid intake were overall low, although were consistent.

As with the other examples, in the week prior to testing there were numerous observed changes. This began with a reduction in food intake to almost nil; in the 5 days prior to testing positive, he consumed only mouthfuls of fruit; and there were 2 days of no intake. There was also a large increase in the amount of time spent in his room and times sleeping throughout the day. This was followed by an increase in restlessness where he was unable to sleep during the night and appeared unsettled. There were periods of shouting out and a large increase in agitation. He was verbally hostile towards both his wife (on the telephone) and staff, and even attempted to assault staff using his walking frame. The day prior to testing positive, he slept for the majority of the day and did not leave his room. He also vomited on two occasions. All of this behaviour was very out of character.

It should be noted that none of these behaviours meet the current testing criteria for COVID- 19, as such we would like to thank our Trust for respecting our clinical intuition and allowing us to test our patients based on these observations. We would encourage others working to be vigilant and trust their instincts – the presentation of COVID-19 is clearly more complex in dementia.


Rebecca Dunning, Humber Teaching NHS Foundation Trust, and Emma Wolverson, Humber Teaching NHS Foundation Trust, University of Hull, Hull, UK