Alzheimer's disease & dementia – Care and support in a COVID-19 world: Sharing experiences from the frontline
- To provide a brief literature update of COVID-19 relevant information relating to the care of people with dementia from the medical literature
- To share experiences (challenges, tips) from clinicians working on the front line
- To signpost to online resources/guides relating to the care and support of people with dementia and their families
- To host a Q&A for delegates
Dementia Academy launched its first live webinar in response to the COVID-19 pandemic on 24th April, following the success of MS Academy’s webinars and the clear need for support, education and information at this challenging time. Over 120 professionals registered to attend the webinar live.
Chair Iracema Leroi opened the webinar, setting the scene for the pandemic, noting that as things calm down, we are in the information-gathering stage of addressing the less urgent, but still important, areas of care.
We want to ensure we share practical and accurate information. We are facing new clinical scenarios and we need to work this all out together.
This webinar addressed three themes:
- Clinical care in memory clinics
- Adjusting and adapting clinical practice
- Crucial questions and difficult decision-making
Clinical care in memory clinics
Is a person with dementia at a greater risk of COVID-19 than any other person? (3:53)
Rónán responded, saying that whilst biologically, there is no evidence to suggest they would be at a higher risk, this is a complex question and that ultimately, yes, they are at a higher risk.
- People with dementia often have a number of comorbidities, and we know that people with hypertension and existing cardiovascular risk factors are at a higher risk.
- The overlap of dementia with cardiovascular disease is significant.
- People with dementia are more likely to be older and we know the risk of severity increases with age.
- The social isolation and distancing measures that we have introduced are impacting on people with dementia and their families. The need to isolate in care homes, and for people with behavioural difficulties, is harder.
- People with dementia do not have as high an awareness of the social distancing measures, and this could make them more likely to come into contact with the virus.
Several front-line carers, particularly in care homes, are reporting that they struggle to manage the so-called ‘challenging behaviours’ usually manifesting as agitation or aggression and there are growing reports of a rising use of antipsychotic medications. (7:09)
Gregor shared that this hasn’t been his general experience so far. His team expected severe pressures on their inpatient units and an increased level of agitation, but there hasn’t been this to the extent anticipated.
- The brainworks that we use still apply. A thorough assessment of the behaviour, and then come up with ways to manage and support it that don’t require antipsychotic medications. Areas to consider:
- why it’s coming about for them,
- looking at their environment,
- their interactions,
- their carers.
- We know that these medications are often less helpful and can be harmful, so they should not be turned to immediately.
- There’s an emerging story that older people might not be presenting for COVID-19 with normal symptoms of a cough and breathing problems. There are suggestions that a sudden change in behaviour or increased confusion can indicate COVID-19. An early change in mental state over respiratory symptoms, initially, could be suggestive – and in these circumstances, antipsychotic medication could put additional pressure on the person’s respiratory system.
Assuming COVID-19 status is negative and an individual is physically well, please outline some of the non-pharmacological approaches that can be used to manage agitation or aggression. (11:53)
Karen concurred with much of Gregor’s comments in the previous question. Dementia UK have not seen the anticipated spike reporting the prescribing of antipsychotic drugs as expected either.
- We need to be really mindful of the things that people with dementia communicate with their behaviours.
- There is a lot of information available but we want people to have the right information at the right time, and we are trying to offer specific advice around those.
- Think about the reasons and rationales for certain behaviours.
- Think about practical things to do to help stop a person with dementia wanting to leave the home. An example is to put a notice on the door with a message saying ‘don’t go out, there’s a really bad case of flu going around’ – using language that they will understand to explain the situation to them.
There is a growing concern in the increased use of pharmacological restraints for people with dementia in different settings as an attempt to reduce ‘wandering’ or contact with other residents in confined spaces, or to stop people going out and increasing their risk of exposure to infection. (15:44)
Diana suggested that care homes or nursing homes supporting people with dementia should already have preventative mechanisms in place – prevention is the focus. However, if someone is severely agitated, she noted that they may need some medication, being clear that both methods can be necessary at different times.
- Identify a garden or areas where someone can wander safely and feel they can be in a different safe space.
- Think about them as a person – what do they want, what do they like, how can I meet their needs?
- Be proactive, checking on people regularly, initiating discussions, anticipating if they need something different, rather than managing circumstances once they have begun.
- Ira added that there are additional challenges of staffing shortages and patients picking up on the stress felt by their carers.
Are there any risks of using cholinesterase inhibitors in COVID-19? (18:39)
Rónán noted that there is no great evidence on this at present. As the overall benefits are reasonably small, and there is danger around sudden discontinuation, one should be careful when deciding to start to stop these medications. We have had to cease treating a few patients who developed bradycardia but it was unclear whether this was due to COVID-19 or not.
- Cholinesterase Inhibitors can be harmful in the setting of acute COVID-19; COVID-19 can cause cardiac problems which could cause or exaggerate the side effects of Cholinesterase Inhibitors.
- COVID-19 can present with atypical symptoms such as diarrhoea, which could appear to those recently starting a Cholinesterase Inhibitor.
- Titrating the dose down could be helpful, though there is little evidence for this. Rónán noted that personally, he would be slow to commence this treatment at present.
We have had several questions about the diagnosis and management of new symptoms of depression and apathy. What are your thoughts? (23:30)
Gregor noted that whilst depression and apathy are typically under-recognised and undertreated, we also need to be wary about potentially medicalising what may be a perfectly understandable reaction to a frightening or stressful situation.
- We need to assess the person and get a clear understanding of their situation. Is it depression or someone struggling to adapt to the changes in their environment?
- Consider if this could be delerium rather than depression and a possible atypical symptom of COVID-19 (as discussed in Q2 regarding antipsychotic medication).
- Change in circumstances or environment can also trigger upset or depression – we must not assume that a change in behaviour and increase in sadness is clinical depression.Psychological support might be useful, although more standard methods can be hard for someone with dementia to access.
- SSRIs are usually well tolerated but they do have side-effects, including GI upset or lower sodium levels which could mimic COVID-19 symptoms.
What about loneliness and social isolation? There has been a lot of discussion around this including its impact. What are some of the ways we can address this? (28:35)
Diana was keen to clarify the concept of loneliness, highlighting that emotional loneliness is very real, even if you are not alone, and that can cause a 50% increased risk of early death, equitable to 15 cigarettes per day (Holt-Lunstad: 2010). She gave some ideas of how to reduce loneliness such as:
- Creativity in thinking of ways to communicate, such as a two-way baby monitor or walkie-talkie if someone is in a hospital or hospice room.
- Cocooning is probably doing more harm than good for many people who are feeling a lack of contact and we need to make use of the digital solutions available to us.
- Diana noted that there is a significant difference in response for listening to a voice versus listening to a voice with an image. There are some really simple video calls that you can use to help people connect with families and friends.
- Communities are coming together, neighbours talking over the fences, and such, and we need to encourage this sort of behaviour.
2nd theme: Adapting dementia services and memory clinics
Despite the huge shift in clinical focus to COVID-19 related issues, usual clinical concerns continue, including people presenting with early complaints of memory impairment. With memory services closed or only offering follow-up support for existing patients, do you have any advice on how to proceed for GPs or families? (31:54)
Rónán noted that the pandemic has changed the way we manage healthcare, and different sites are adapting in different ways.
- In many places clinics were initially cancelled clinics, but there is a growing recognition that, whilst we want to discourage people coming into acute care settings, people still need to get the care they need. Those people are reluctant to come in at the moment.
- We need to adapt our model, and we’ve discussed how to manage remote memory clinics in a short video.
- Telemedicine hasn’t really been used in older people’s medicine until now and this could be an opportunity to try things out.
- Looking at best practice suggests you would offer a hybrid model of some remote calls and clinics and some face to face clinics for more detailed discussions and investigations.
The Atlantic Fellows of the Global Brain Health Institute have put together a series of papers on cognitive testing remotely.
When adopting remote dementia clinic sessions, what are some of the key principles to keep in mind? (38:53)
Karen highlighted a short video recorded alongside Rónán looking at this in more detail.
A few comments from that video include:
- When working remotely, staff have to be upskilled quickly and very different skills of non-verbal communication may be needed to interact and get the best out of the situation.
- Some nurses feel alarmed at effectively assessing things when you cannot be there; and how you can mitigate those risks when the resources you would usually call on are also not functioning in a usual way.
- Employ your listening skills, and be mindful of your interactions over a video-conference; make sure they know you are listening
- How we manage the call or interaction is important – the beginning, middle and end are important and the close is key, from tone of voice and non-verbal communications to mirroring and affirming what the patient and carer has said are essential.
Crucial questions and difficult decision-making
Care partners are feeling the brunt of the changes in services, loss of respite care and closure of day services. What advice can you give? (43:18)
- The change in routines is a real key. Routines give a person with dementia safety and certainty, and these routines have changed completely, both their own and those around them.
- A carer would not commit to 24 hour, 7 days per week. Encourage them. This will not be forever and they have already done 6 weeks. Those who are not feeling loved in their caring role need special care and encouragement.
- Emotionally it is draining, so thinking about how to get those emotions out is important. Talking services and therapies, or just offering a chat, asking what the biggest thing is for them.
- Establishing a new routine is important, with a pattern of activity for morning, afternoon and evening – with flexibility too. Try to mix up cognitive activity, physical activity and rest time. Listening to music, a bit of gardening, some exercise via a video.
Can you provide some basic advice on advance care planning for a person with dementia during the COVID-19 pandemic? (48:05)
- Advance care planning is essential for everyone to talk about at the moment, and in our current situation discussing advance care planning with people with dementia is just as important.
- A short video recording with advice and information is available, and more information is on Dementia UK’s advice, with particular information about having these conversations on the telephone.
Update on available information (49:54)
Clara gave a significant amount of information on online resources, academic articles, and other useful literature signposting. All of the information is included in her slidedeck.
- International Psychogeriatric Association COVID-19 resource page:
- Elsevier COVID-19 healthcare hub: covid-19.elsevier.health
- AMDA Update on COVID-19: paltc.org/COVID-19
- Alzheimer Scotland: alzscot.org/information-during-coronavirus
- Alzheimer’s Society: alzheimers.org.uk/get-support/coronavirus-covid-19
- Alzheimer’s Society of Ireland: https://alzheimer.ie/about-us/coronavirus-covid-19-update/
- Alzheimer Society of Ireland resource hub
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ChairProf Iracema Leroi
Associate Professor of Geriatric Psychiatry, Trinity College Dublin & Faculty, GBHI
SpeakersProf Karen Harrison Dening
Professor of Dementia Nursing, Dementia UK and Admiral Nursing Dr Clara Domínguez Vivero
Clinical Neurologist, Galician Health Service, Pontevedra, Spain, Atlantic Fellow in Equity for Brain Health, GBHI Dr Rónán O’Caoimh
Consultant Geriatrician, Mercy University Hospital Dr Gregor Russell
Director of Research and Development, Bradford District Care NHS Foundation Trust
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