Reflecting on initial experiences of COVID-19 in people living with dementia in an inpatient setting

Working on an acute mental health inpatient unit for people living with dementia, we recognised that it was inevitable that COVID-19 was going to make its way onto our ward at some point either via someone joining us from a care home, from another hospital setting, or via one of our 50-strong staff team. In early April, we had our first positive case of COVID-19 on our ward and more have followed since. In this blog we reflect on our experiences of supporting people with dementia through COVID-19 in an inpatient setting and share what we have learnt about COVID-19, about dementia and, most importantly, about ourselves.

Diagnosis: The importance of knowing the person

There is growing recognition that the presentation of COVID-19 in older people and particularly older people living with dementia is a-typical. None of our patients had a persistent cough or high temperature prior to diagnosis, for instance. We are very clear that successful diagnosis of COVID-19 in dementia relies on good person-centered care - you need to know the person to spot the changes.

For patients that we know well and have been supporting for some time, we have been able to quickly recognise the signs of COVID-19. What we have observed is subtle changes in sleep, diet and behaviour – changes that we have only detected because we know the person well and we are fortunate enough to have the staffing levels to be able to spend time with people. We keep good records on sleep, food and fluid and have used this to evidence our clinical intuition. These signs could have been easily missed in busy and impersonal settings.

Diagnosis is trickier when we don’t know people and as we get new admissions. In an acute inpatient setting, it is common for people to present on admission with delirium due to unmet pain or missed infections, and the move to an unfamiliar environment only serves to increase disorientation and confusion. In addition to COVID-19 screening for new admissions, we are adapting our reception documents in an attempt to gather more information to help us identify what is ‘typical’ for someone. It is our hope that this will help us to detect the tell-tale changes that we have observed in patients with COVID-19.

Swabbing ain’t easy!

The swab needed for a positive diagnosis of COVID-19 ideally needs to be taken from the back of a person’s throat - an uncomfortable process that many people will not be familiar with. So often in dementia care we rely on non-verbal communication and mirroring to help to convey our communication; our instinct was to demonstrate opening your mouth to encourage people to open theirs, but this is impossible to do when wearing a face mask. We therefore have to demonstrate swabbing on dolls and teddies. We have tried doing swabs in front of a sink and before or after brushing teeth as this might also provide some context and cues.

What’s especially important to note is that swabbing hasn’t always worked the first time. We have had negative swabs and worried that they would have been positive had we been able to swab deeply enough, but we have got better as we have grown more confident. We have managed to swab all our patients when needed, even those with advanced dementia. At times, this has been undertaken without informed consent (as this was not possible), but in all such cases a best-interest decision was taken by the ward team following discussion with the families.

Social distancing and PPE

Even before our first positive case, we had started to implement social distancing measures – well, as much as you can on a dementia care ward! Many of our patients rely on touch to help with tasks of daily living such as washing and dressing, and we all know how vital touch is in dementia care to provide reassurance and comfort - particularly in such in uncertain times. As smiles and other facial cues have become buried behind PPE, touch has taken on even more meaning. Many of our patients have limited understanding of the global pandemic that is consuming us with fear. Indeed, many of our patients don’t even recognise being in a hospital setting. Without context, we were concerned that seeing staff in PPE would be confusing and disorientating – even frightening. However, we have been amazed with how well people have adjusted to the sight of staff in PPE.

This is reflective of our larger observation that it has been far easier for our patients to adjust to social distancing and PPE than it has been for ourselves. For us, PPE made the pandemic real; the very act of putting it on quickens the pulse and raises anxieties. We have observed how staff even moved differently in PPE at first – we suddenly became more serious, more frightened - and perhaps more frightening. It’s hot and uncomfortable (particularly for those of us who wear glasses or are hard of hearing), and does little for our interpersonal skills, but with each day that passes it’s becoming just another layer of clothing. Already we have returned to singing and dancing on the ward with patients as we always did, and as we must in good person-centered care. The only real difference is now that we’re much hotter and sweatier.

The other significant challenge from social distancing has of course has been the absence of families on the ward. Changes surrounding visiting have led to new worries about family members and how they are coping with their own loneliness and isolation. We have done our best to help people stay connected though, using video calling and e-mails to send photos and messages in addition to receiving cards sent in the post. We also have a full-time staff member dedicated to family liaison and support. It is crucial to take the time to arrange support for family members to ensure that their own needs are being met, for instance by arranging shopping and/or meal deliveries for them.

To move or not to move?

Our NHS Trust has a cohort ward to care for people with COVID-19. The rationale behind this is that the specialist COVID-19 team can be based there to offer the required support along with concentrated intervention from infection prevention and control.

However, moving people living with dementia is not a decision to be taken lightly. Moves away from familiar environments and people can be very difficult, and many of our patients have already experienced multiple moves. Moreover, the staff on our ward are highly skilled and experienced in dementia care; they are good at reading people, recognising unmet needs and offering reassurance. We know our patients and their families really well and have often worked hard to build relationships.

At times it has simply not been in someone’s best interest to move them from our ward, or we have not considered it possible to move people because of the high levels of distress this would result in for the person (and consequently for staff). On other occasions we have made the decision that it was in a person’s best interest or the best interest of other patients (where the person is unable to be isolated or their distress is impacting significantly on others) to move to the cohort ward. These decisions have been highly complicated multi-disciplinary decisions with involvement from families and have required constant reviewing as a person’s illness has progressed. These decisions have, on occasion, divided the team and provoked strong emotions.

People remaining on the ward with COVID-19 have been isolated. Again, this is not an easy decision to take in dementia care as confining a person living with dementia to their room 24/7 has serious implications for their wellbeing and cognition. We have managed this through the provision of one-to-one support, but this is far from an easy or ideal solution and not something to be undertaken lightly. As a highly restrictive intervention it raises its own challenges; it’s hard know when to back off and when to engage, and as such highly skilled staff are required. It also isolates staff members from their colleagues at a time when they may need support more than ever, and so rotating staff on one-to-one engagements has proven critical. Our occupational therapy colleagues have also worked hard to create rummage boxes, distraction packs and activities that can be taken to people. The garden has been an important way to give people freedom and space during isolation. 

Life after COVID-19

To date the majority of our patients, although tragically not all, have survived COVID-19 despite their dementia and comorbid health conditions. What we are learning about now is life after COVID-19 - such a serious illness in an advanced dementia clearly has lasting consequences. People remain very weak and tired for many weeks, but getting people to rest is not easy. Our patients have definitely been more confused and anxious after surviving COVID-19. 

Our next challenge as professionals, then, is how do we best support people living with dementia after COVID-19? What support do they and their families need? And what support do we need?