Please note that all session and slide content are the views of the Speakers, not the Dementia Academy. The content of the recording is the speaker’s personal opinion at the time of recording. Due to the everchanging situation, advice given at the time of recording is subject to change.

Chair

Prof Iracema Leroi, Associate Professor in geriatric psychiatry, Trinity College Dublin

Speakers

Diana Burgui, Medical Social Worker, Memory Clinic at Mercer’s Institute for Successful Ageing, St. James’s Hospital Dublin

Dr Clara Domínguez Vivero, Atlantic Fellow, GBHI Trinity College Dublin

Dr Joseph Kane, Academic Clinical Lecturer, Queen’s University Belfast

Zena Aldridge, Admiral Nurse Research Fellow, Dementia UK

Summary

The recent webinar, ‘Supporting families and care partners of people living with dementia in a COVID-19 world’ addressed some questions that people caring for those living with dementia were asking. The webinar was held on 6th May 2020.

The webinar addressed questions across 4 themes:

  • General issues that have been raised
  • Questions from people who live together with a person that they care for who has dementia
  • Questions from people who live apart but are supporting a loved one with dementia
  • Questions from those whose loved one with dementia is a resident of a care home

General issues that have been raised

Are people living with dementia at a higher risk of developing COVID-19? (3.36)

Joe: We’re finding out more and more about COVID-19 every day, and while there is lots we don’t know, we do know that managing social distancing and ways of keeping people protected is harder for people living with dementia. We all suspect that the risk is a little bit higher, especially in care homes where there are more people both with dementia and with COVID-19, and where staff are moving between people so much more.

Zena: Lots of people are saying they’re struggling to get appointments but most memory clinics are able to offer telephone consultations. We do need to think about the context we are in, knowing that there are a lot of disruptions to our lives and our routines at the moment, so thinking about if there is anything else that needs to be resolved is important.

You need to call the memory clinic and arrange a telephone consultation and you may need to call your sister’s GP and discuss any other underlying concerns.

It is really important that we remember that the NHS is still open and that if anyone has any health concerns, they raise them straight away with their GP.

Ira: Please also remember that we know COVID-19 can manifest in confusion or delirium for some people, or even agitation and aggression, so please bear that in mind and discuss it with your GP or local memory service if you are concerned.

Diana: We need to think about this both practically and emotionally.

Practically, boredom usually comes from a change in routine, so we need to think about what the grandchildren were bringing to his life, and how his emotional contact with his grandchildren can be kept, by being creative. Ideas include:

  • Organise a video call perhaps using a smartphone, tablet or computer.
  • If the grandchildren were stimulating exercise or activity, do some of those same activities and talk about the grandchildren at the same time.
  • Help his understanding of why they can’t be there in person in a simple way, perhaps explaining it as a bad flu that is going around that both he and they need to be protecting themselves from, and reminding him that he will see them again when that flu is passed.

Emotionally, if he is tearful, let those tears flow, and gently talk about the children he is missing. Ideas include:

  • Looking at photographs, 
  • Asking him to describe the children’s appearance,
  • Talking about what they might be doing now.

Joe: We don’t have as much research and information as we would like on this topic so we don’t know if there is a specific link between COVID-19 and dementia. We do know that people with dementia have a more vulnerable brain than the general population, and that things like infection, changes in circumstance, or even something like constipation can have an effect on the brain of someone who has dementia. 

We need to think about that.because often, when someone’s dementia seems to get worse over a short period of time, it’s often an infection rather than their dementia – and as the person recovers from that infection, their memory or behaviour changes often recover to their previous level too.

If you are seeing a rapid progression in dementia symptoms, you need to think about if there might be something going on, like COVID-19 or a different infection, or a change in environment, because it might be that when that is addressed, their dementia symptoms may well return to the level they were before.

If you are seeing this in a loved one, please call your GP urgently because they may well need medical attention.Ira: We also need to remember that people are taking a long time to recover from COVID-19, and so it might be that someone with dementia who is recovering from COVID-19 continues to experience that confusion or those behaviour changes for a long time afterwards, as they slowly get better from the infection.

Zena: Unfortunately, we are seeing this for a lot of people; initially we all worked really hard to put practical things in place like how to get the shopping, how to address a changed routine…But I think that, in doing this, a lot of carers have neglected their own emotional state and their feelings about what is going on. Added to this, a lot of people’s emotional support was stripped away almost overnight. 

We need to really encourage carers to put their own needs first sometimes, to take a little bit of space if they can, and that is going to have to look really different at the moment. Recognising that your feelings are real, valid and that you deserve to have them understood and supported.

Thinking creatively about this might include:

  • Spending time using digital ways to connect with friends and family
  • Talking about your feelings with friends or family on the phone
  • Using a telephone helpline, such as through Dementia UK to talk honestly about any feelings that you don’t feel comfortable sharing with family
  • Journaling to help process your emotional state

Don’t wait for lockdown to end – if you are feeling distressed, please reach out now.

Questions from people who live together with a person that they care for who has dementia

Zena: This is about weighing up the risks and benefits of different activities, and where you live will affect how you go about this. But keeping someone locked indoors is impacting their liberty and we need to think about whether, in trying to keep them safe, we are overstepping the mark on forcing them to do something against their will.

We understand that someone with memory problems won’t be able to retain the information about why they can’t go about their normal routine, and we need to try to find a way to meet their needs to get out, have some exercise and so on without them being at risk. 

This is especially important as this lockdown continues and the sunshine makes it incredibly difficult to be confined indoors. Locking loved ones inside is likely to exacerbate verbal aggression.

Ideas include:

  • Finding some open space near home where you can walk safely
  • Going outside into the garden
  • Capacity dependent, they could still take the dog out – others will avoid contact at the moment anyway.
  • Consider when it’s quieter outside and think about going to the corner shop during this time
  • Can you go with them, having a walk as a couple

Get a sunflower lanyard, which signifies to others that the wearer has hidden disabilities and this will give others the knowledge to give a little more space

Diana: I know that COVID-19 has shaken up our world and the things we thought we had certainty over. My advice is:

  • ‘Live for today and keep anxiety at bay’
  • Plan for other eventualities

I would encourage you to think about having family conversations about advance care planning, about wishes around having a good death – children too often have these questions and don’t know how to ask them because we seem not to discuss it. Have these discussions now, whilst they can easily be had. 

Often those in a caring role can neglect their own plans and wishes – make sure your wishes and preferences about your own life and death are thought about. They are just as important as the person’s who you care for.

Beyond this, try to accept your anxieties about the unknown – they are completely normal.  If you need to talk about them, please call a friend, family member, or a helpline. You need to try to live in each day as much as possible, try not to spend too long dwelling on the past or the future.

Zena: Sleeping pills are only part of the solution – we need to think about the other elements of the problem too, which might help is to find some solutions. For example:

  • We are moving into summertime, the changes in light can disrupt sleeping patterns and will settle in time. You can try to darken your room 
  • There may be a physical reason that someone is not sleeping, such as constipation, a urinary tract infection so check for this
  • Improving sleep hygiene to encourage good sleep at night, including:
    • Limiting daytime napping
    • Keeping caffeine to a minimum later in the day
    • Establishing a bedtime routine
    • Getting outdoor exercise, whether in the garden or taking a walk

Sleeping pills may be required in time, but usually only for a short time to help ease someone into better sleep patterns.

Asking for some short term social support such as a night-time carer for a few nights could enable the partner to get some unbroken sleep. This might better equip him to help make changes that will see longer-term improvements to both his wife’s and his own sleep.

There is still social care support available, so please do ask for it. You might also possibly want to consider asking family members to come and provide overnight support; it’s about weighing up the risks about the virus versus your overall health.

Ira: If the person you are caring for has a nap, try to take a nap, or have a rest yourself, rather than rushing around to do all the jobs you couldn’t do whilst they were awake. I know it’s a tricky balance to strike, but trying to take that time for yourself could really help.

Questions from people who live apart but are supporting a loved one with dementia

Diana: I would begin by saying that moving to a nursing home should always be a last resort and to really look back and check that conversations about wishes, needs, risks and requirements have happened with your mother, with her health professionals and between yourselves.

If you and your mother are confident that a move to a nursing home is truly the best way to meet your her needs, then there are lists of nursing homes available online via charities, and they also have suggestions about what you can ask of care homes and of your mother to make sure that her emotional and practical needs will be met.

Taking her to visit the home you think would fit her best, so that you can both get a feel for the place is important, and you can compare this with the written reports about the home as well.

Extra things to ask, because of COVID-19, include:

  • Whether there has been any cases of COVID-19 in that care home
  • What measures have been put in place to protect staff and residents
  • What are their protocols for transferring residents to the local hospital

Joe: We know that COVID-19 is dangerous, particularly for older people, but the vast majority of patients do come through COVID-19, and a large number won’t even have symptoms.

If, before COVID-19, you would have taken your mother to hospital right now, then you should strongly consider doing that.

Try and work out what your mother’s wishes are. Is she someone who would prefer to get medical help as far as possible? Or would her preference be to stay home? If you are able to engage your mother in discussing this, please do that. If she is not able to discuss it, try to consider what you know about her and her wishes. You can call your GP to talk about this too.

There is always a danger when someone goes to hospital that they may deteriorate there, and I want to emphasise that, as a result of COVID-19, there has been a real focus on improving palliative and end of life care in hospitals. 

There is a lot of support, care and medications that can make someone’s experiences at the end of life a lot more appropriate and these can be provided in a hospital or at home. 

To access this, you would need to engage with your GP or local hospital. If you think that you need to be having these conversations, communicating with your mother, and your GP, is a good place to start.

Ira: There is a helpful video on advance care planning that admiral nurse Dr Karen Harrison Dening has recorded specifically looking at how we have these difficult discussions around the end of life, particularly at the moment during the coronavirus pandemic.

Questions from people whose loved one with dementia lives in a care home

Joe: This is a difficult situation facing a lot of people. Try to be kind to yourself. Not seeing the person that you care about must be very hard, but we understand that limiting visitors is a sensible step that care homes have taken to try and minimise the spread of coronavirus. 

We know that the majority of people in care homes are recovering well from COVID-19 and we know that care homes have learned a lot over the past several weeks about how to limit the spread of the virus and protect their residents from coronavirus.

Care homes are increasingly finding ways to balance keeping the risk of spreading the virus to a minimum with the distress that can be caused to residents by not seeing their loved ones. 

You could ask the nursing home to see if they can do anything to make the situation easier for both you and your wife, whether a regularly scheduled phone call or even a video call.

Zena: Whatever I say here, please know that there is no one answer – grief and bereavement are very individual, and what we’re going through right now is unprecedented. The rites of passage that are normally associated with death – funeral arrangements, legal arrangements, the funeral itself, the wake – are all very different at the moment.

There are ways we can redefine how we manage these processes, such as putting funerals online, and online wakes too, perhaps. 

Think about what resources are available to you for psychological and emotional support, whether through professional help, support from family and friends or self-support. 

Acknowledge your feelings. Also, don’t feel guilty if you aren’t feeling grief right now. There is no process that makes this right or wrong, so be kind to yourself with where you are and what you feel.

Diana: On top of this, don’t underestimate the value of practical support. Reach out for help if you need it and don’t say no if it is offered.

We have this image of what death is like, mostly from television, and that’s not true for many. We need to understand what dying looks like. Diana highlighted palliative care Kathryn Mannix’s work on dying and a radio interview she held recently on having a ‘good death’..

When we have been caring for someone, that takes up a lot of our time, and when they are gone it can leave a gap. Accepting this and slowly moving into taking this time back for yourself is important.

Joe: I think that these webinars have shown us where there are gaps in our knowledge, and we have to be honest and say ‘we don’t know’ to many questions.

It’s wonderful that research is being done, and that it is being offered to people, because the only way to gather the information we seek is through research.

Research can be viewed as something quite alien and remote, but all it is, in essence, is a group of people from different backgrounds and experiences, working together to find out answers to unknown questions which could benefit a wider group of people. 

However, as with all research, it is important to look at what will be involved. Normally, if you are invited to take part in a study, you will be given an information sheet. I would encourage you to really read it, carefully, and discuss it, and read it again. Think about the impact on the person with dementia and the caregiver, and whether you are comfortable with the requirements of the study. 

If you have questions, please use the phone number that will be provided on that information sheet, and ask the researchers for more information.

Ultimately, this is a choice, and a collaboration. You do not have to do the research if you choose not to, and the healthcare you receive and the level of your care will not be affected in any way by your choice.

Try to come to as balanced a decision as you can, and if you can participate, then thank-you, for helping us to understand more, and make the world a better place through that understanding.

Ira: Remember that you can also talk to your GP, and that ultimately it is the choice of the person who is living with dementia.

Resources

Dominguez-Vivero-slides-webinar03-COVID-support-families-May-2020

All links and resources in this document are available below

Care at home and in the community

Alzheimers Ireland Resource-Hub-Covid-19

alzheimer.ie/about-us/coronavirus-covid-19-update

IDEAL-CDI-leaflet-for-people-with-dementia_including-DUK

idealproject.org.uk/covid

SJOG_Hospital_Carers_Booklet

stjohnofgodhospital.ie/images/documents/SJOG_Hospital_Carers_Booklet.pdf

Supporting-People-with-Dementia-During-Covid-19-NHSCT

northerntrust.hscni.net/site/wpcontent/uploads/2020/04/Supporting-People-with-Dementia-During-Covid-19-NHSCT-23-April-Update.pdf

I need to zoom out

Time to make a move?

Falling sick

Bereavement and grief

irishexaminer.com/breakingnews/lifestyle/features/dying-well-dont-put-off-talking-about-death-with-loved-ones-936486.html

Death-and-grieving-in-a-care-home-support-04_20-final

publichealth.hscni.net/publications/death-and-grieving-care-home-during-covid-19-pandemic-guide-supporting-staff-residents

More COVID-19 resources

→ More webinars

  

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