Coronavirus: questions and answers

Updated on 3rd July 2020

During these uncertain times, Dementia UK is working hard to support and listen to families.

We have put together a list of commonly asked questions to our Helpline, which we will update as the situation develops and as new questions arise. Our Helpline Nurses offer practical and emotional support to families and can be contacted on 0800 888 6678 or by emailing helpline@dementiauk.org. The Helpline is open seven days a week, 9am-9pm Monday to Friday, and 9am-5pm on weekends.

If you have any questions you would like to see answered or feedback please email contactus@dementiauk.org.

Click on the links below to take you to the relevant section.

Living at home – looking after yourself

What can we do at home to try and look after ourselves (mentally and physically)?

It’s important to be informed about the virus, but this may prove overwhelming to both you and the person with dementia. Reducing the amount of information you receive from the TV, radio or phone can be beneficial for your mental health. Looking out for updated guidance from the NHS and the government at certain times of the day can help to reduce anxiety.

If possible, set up different areas around your home so that you can move from activity to activity; watch favourite films and musicals in the living room; listen to the radio in the kitchen; do jigsaw puzzles at the table; take walks around the garden, if you can.

Go outside, ideally into your garden to limit contact with other people. Finding things to do outside or simply sitting in whatever sunshine we get will help. Fresh air and green space will help lift the spirits and also provide some stimulation. If you can, plant up a few pots with seeds or flowers that can be placed near the windows. If you have a garden shed, there may be some projects in there you can try – like making a bird feeder.

However if your relative with dementia needs a change in scenery after long periods around the house, you could go to a local park ensuring you take social distancing into account.

Ask friends and relatives to bring you films, puzzles, music, games – anything you think the person with dementia might like to do. They can leave these outside the front door for you to maintain social distancing guidelines.

I’m worried that the professional carers who come in to help us might not be able to come. What should I do?

Under current guidance, many health care workers will continue to work as per normal. While care agencies have sufficient staff to do so, and the relevant personal protective equipment, they will carry on visiting the people on their roster.

The Admiral Nurse Dementia Helpline is there to support people who are feeling worried, and who need specialist advice and support. Whilst we cannot predict what the future will hold, our dementia specialist nurses can give families the strategies and the perspectives to cope in these uncertain times.

I look after my husband at home who has dementia and our weekly carer’s group has now disbanded. What are we going to do?

As face to face day centres and support groups have closed, it is so important that you find other ways to give yourself some respite. This may include keeping in contact with members of the day centre or support group via social media, online forums or by phone. Some organisations have free activities, advice and support such as Singing for the Brain online, and Live Better with Dementia.

Living at home – health and behavioural concerns

I need to go outside to pick up supplies for my relative with dementia but I am worried that I might catch the virus as I care for them full-time.

It may be better to rely on family, friends, neighbours or local volunteers to get shopping for you. The major supermarkets are trying to put more home delivery and Click and Collect slots onto their sites daily so do keep checking this, although we know that these services are very busy and you might not be able to reserve a slot. Check local websites such as Next Door, In Your Area, as well as your local council for support groups and volunteer networks that are operating in your area. These groups can help you arrange deliveries and leave them at the front door for you, to maintain social distancing.

My relative has an underlying health condition alongside their dementia. How do I minimise the risk of them going to hospital?

As far as is possible try to keep as fit and healthy, as prevention is better than cure. Try to keep as active as possible, eat and drink healthily, take medication and treatment as prescribed, ensure the home is free from trip hazards to prevent falls.
Staying physically active during this time will help to keep you mentally and physically well.

Hand hygiene is important but it can be difficult to explain to a person with dementia why they should wash their hands more frequently, so you could put signs around the house saying that there is a flu outbreak, as well as visual prompts next to the basin to encourage handwashing. It can also be difficult to remind them why they should keep a safe distance from others.

This can be especially difficult in shops or out walking if the person with dementia wants to go up to see or talk to people. Try to pick quiet routes for your walk and go out either early in the morning or in the evening.

GP surgeries are still supplying repeat prescriptions and most are arranging to have the medication delivered to the person’s home either through NHS volunteers or through a pharmacy scheme.

Please do not hesitate to still visit A&E if you have a need for urgent medical care.

We advise everyone to read the NHS guidance for households with possible coronavirus infection, which includes specific information for those living with a vulnerable person, how long periods of self-isolation should last as well as the symptoms to look out for.

I am caring for my relative and their behaviour is quite unpredictable. How do I manage the situation, when we’re confined to the home?

Engaging in activities that the person enjoys and going outside for some exercise and air could help to prevent and defuse tense situations. We have some leaflets on our website that can help explain why these behaviours may occur; how to limit the risk of them occurring as well as managing them when they do occur.

Please see leaflets on Sundowning and Dealing with restlessness.

If you are finding it difficult to cope, it is important to get support and specialist advice from the Nurses on our Helpline, particularly as any sudden changes in behaviour could be a symptom of other underlying conditions, such as delirium, which can be treated.

My husband is in the late stages of dementia and has other physical health problems which means he is totally dependent on others. I can’t get an online shopping slot and have been turned away from local supermarkets in the hour for vulnerable people as we are not on the vulnerable people register. What can I do?

Discussions are still ongoing between the retailers and governments across the UK nations to help vulnerable people get access to food deliveries. In the meantime, the government has published this information for people needing support.

We are speaking with other charities about how to improve this situation, and will continue to call upon the government to clarify the process for vulnerable people. If you have any further questions on our work around this, please contact campaigns@dementiauk.org.

You can also contact the Admiral Nurse Dementia Helpline on 0800 888 6678.

I’m worried that my relative has dementia but I can’t go to the GP to get a diagnosis.

GP services are stretched now and understandably concentrating on the coronavirus or other critical conditions. As a result, it is advisable to wait until restrictions on visiting GP surgeries have lifted before starting the process of getting a diagnosis. They will carry out a range of tests to rule out any potentially treatable conditions before making a decision as to whether to refer the person to the memory assessment service.

It’s important to bear in mind that if a person’s behaviour has changed suddenly, then there is usually a reason for that. It could be the result of delirium, caused by an infection or another physical illness (unrelated to coronavirus). In this circumstance, please make an appointment with the GP, who may consult with you over the phone or by video call. They can prescribe antibiotics or other medication, if necessary. Some pharmacies are offering delivery services. Otherwise, the local volunteer groups running in your area can pick up and deliver medication.

If you have questions about particular symptoms, or changes in a person’s memory or personality, please contact the Admiral Nurse Dementia Helpline.

What if my relative lacks the capacity to make decisions about their future care?

Where a person no longer has the capacity to make these decisions, they should be made in the person’s best interests, by the clinicians involved in their care, and family carers or other appropriate individuals, where this is possible.

You can read more in our Changes in care: capacity and decision making leaflet.

I am worried that my relative with dementia may die because of coronavirus – or that I might. How do we prepare for this and ensure our wishes are respected?

An advance care plan is a document that expresses a person’s wishes and preferences for medical treatment and end-of-life care. It may also include other elements such as a funeral plan or a Do Not Attempt Resuscitation (DNAR) order.

It’s a good idea to write down your wishes in regard to future care.

If you want to discuss the preferences of someone you care for during the coronavirus pandemic, you might have to have these conversations over the phone.

Should I make sure a person with dementia wears a face mask and if so, how do I do it?

There are different rules throughout the UK around wearing face masks at the minute. Do check with your country websites what the situation is like where you are. However, if you are feeling anxious about visiting the shops or taking public transport, then a face mask is a good precaution.

If you’d like to encourage your relative with dementia to wear a facemask, you could wear one yourself to allow the person to mirror what you’re doing. You could also say that there is a virus going around and a mask is needed to protect them. The person with dementia only needs to wear a mask where necessary, and wearing one all the time could be upsetting for them.

Living at home – scams

A person I know with dementia has received calls from someone claiming they can deliver food shopping during the virus outbreak – in return for their bank card details. How can I stop them from being a victim of a scam?

Most telephone providers have a system which can protect people from scam callers. Calls from certain numbers can be blocked, including those from withheld and unrecognised numbers. Contact their telephone provider for details.

My elderly neighbour has received visits from someone selling coronavirus tests in exchange for money. How can we protect a person with dementia from people like this?

It may be helpful to put a notice on the inside of the front door to remind them not to answer the door to someone they don’t know. You may also like to consider a ‘community alarm’, in the form of a pendant, which the person with dementia can press if they feel concerned by a caller. Family members and emergency services can be notified when this happens.

Living at home – communication issues

How do I explain the situation to a person with dementia?

Use simple and short sentences that you can repeat on a frequent basis, rather than trying to explain things in detail. You could tell them that there is a serious flu outbreak and people are being advised to stay home. Having this message written on notes throughout the house may help, particularly on the front door, at eye level. However, if the person with dementia insists on leaving the house, assess the level of distress this would cause if you were to try and persuade them otherwise; sometimes it is better to go for a short walk, following social distancing advice wherever possible, and then to return home for a ‘nice cup of tea and a biscuit’ once they are ready.

What do we do for information if we’re not on the internet?

This question tends to come from relatives who do not live with the person with dementia – such as grown up children. We advise them to set up a regular time each day to call or video call with their parents or relative, to provide reassurance and also pass on any updates issued by the government and Public Health England. Pass on to them the phone number for the Admiral Nurse Dementia Helpline: 0800 888 6678 or email helpline@dementiauk.org.

Care homes

I am worried about my relative who is living in a care home

For many carers and family members this is still a worrying time if a relative with dementia is in a care home. We are working hard, alongside other charities, to ensure that the care home sector gets the support it needs as the lockdown eases. This is in addition to making sure families have access to compassionate care and more relaxed visiting restrictions to improve wellbeing throughout the entire family.

For any families who are experiencing a range of feelings from worry about a relative’s health in a care home to guilt about not being able to see them, we’d encourage you to speak to the home manager to talk through some of the challenges and anxieties you are facing. You can also use this as an opportunity to go through Advance Care Plans that you set up with a relative to ensure that their best interests are respected during this pandemic (please see our information around this here).

How can I stay in touch with my loved one in a care home during this time when I cannot visit?

There are a few different ways to keep in contact from a distance. Some practical ideas are:

  • Arrange frequent phone calls. Explain the situation using simple and short sentences that can be repeated on a frequent basis, for example, that there is a virus going around and for the safety of people in the home, people cannot visit, temporarily
  • Posting letters to the person and asking staff to read them out
  • Using technology to keep in contact with the person. Many homes use Face Time or similar platforms to communicate; so check with the home what they use. Remember that your loved one may need some help by care staff to use the technology
  • If the person in the care homes likes flowers, you could send a small bouquet and ask the care teams to help the person arrange them as an activity
  • Sending photographs with notes on (listing the people in the photo) so your loved one knows who they are. The staff at the care home can then start conversations with the person about the photos

The care home my relative is in is not allowing FaceTime/Skype calls anymore. What do I do in this situation?

Different care homes will have different policies in place. Speak with them to see if they can offer any alternatives to stay in touch. Care homes are there to support your loved one, as well as the wider family. You should discuss any issues you are having in staying in contact with the person with a member of the team.

My relative is dying in a care home. I need to be there for them but I’m not sure how I can be

Do check with the care home to find out what the arrangements in place are to say goodbye to your loved one and to see if they can make things as easy as possible for you. Some homes are arranging for the next of kin to be with a person who is near to end of life as long as they wear PPE, are free from illness and do not go anywhere else in the home. If you are unable to see your loved one during their final moments, there may be an opportunity to commemorate them by planting a tree or having a bench built in the grounds of the care home, or somewhere special to you both. The care home manager will be able to advise on alternative ways in which you can say goodbye.

Our Admiral Nurse Dementia Helpline is also there for you to work through any feelings of grief you are experiencing.

Hospices

My relative with dementia is in a hospice. Given the isolation measures which are now in place, I’m really worried that I won’t be able to spend time with them in their final moments.

You can talk to the hospice to find out what visiting allowances they have. Some hospices are arranging for the next of kin to be with a person who is near to end of life as long as they wear PPE, are free from illness and do not go anywhere else in the home.

Our Admiral Nurse Dementia Helpline is also available to acknowledge and listen to the strong feelings which families may be having at this time, and to offer families ways of coping with this.

Hospitals

How can I support my loved one  in hospital?

Agree a communication strategy – It may be helpful to find out the best time to make a phone call to the ward. Hospital wards are very busy and therefore certain times may be harder to get an update or be able to speak to the person who is admitted. It may be that the afternoon is better to ring as the doctors may have completed their rounds and therefore nurses will be able to give you more information.

Provide information about the person – It is difficult when you are unable to visit a person with dementia in hospital as you may be worried that their usual routine and preferences may not be known. There are documents that can be used to help make staff aware of the persons likes/dislikes, usual routine and life history, which may help to alleviate some of this concern. Dementia UK has created a useful template around Life Story Work which you can access here.

Comfort Items – Hospitals can be quite unsettling places for people with dementia and during coronavirus this distress may be heightened if family members are unable to visit. It may be worth providing some comfort items that may help to reduce distress, for example a blanket that is normally used at home, a photo album or a pillow. Many hospitals are currently developing ways in which people are able to drop off items so it is worth checking on the hospital website or asking the nursing teams if this is something that is happening.

Virtual technology – Many hospitals are now using virtual technology to bring people closer together at times when visitors are unable to visit. Check with the nursing teams if video calls are something that they are able to facilitate and if so, try to book a session.

Identify specialist teams who may be able to help – There are many staff in hospitals who provide support to people with dementia and their families. Check if the hospital has an Admiral Nurse who provides specialist support for people with dementia and their families. The hospitals may also have dementia nurses, carers leads or frailty teams which can offer extra support.

Carer Passport – If you are a carer for someone with dementia, it may be worth just checking what the current policy is with regards to visiting. Although the guidance is predominately that visitors are not allowed in most hospitals, there are circumstances in which they are permitted. A Carer Passport is a record which identifies a carer in some way and it can be used to facilitate this kind of access to a hospital.

I want to take my relative home from hospital as I’m scared that they have a higher chance of catching the virus there.

It is important that you follow medical advice about discharging a person from hospital. There are many things to consider around hospital discharge and premature discharge may make the situation worse. Hospitals are operating strict infection control policies where people with coronavirus will be isolated from others. If you have any questions about discharging your relative early from hospital you should get in touch with their medical team who will be able to advise you accordingly.

Living alone

I am worried about my friend who has dementia, and lives alone. What can I do for them?

You could join your household with theirs in a ‘support bubble’. This means you can visit them, or they can visit you, as often as you wish – including overnight stays. Read the Government information on support bubbles here.

If that is not possible, then try to speak to them as often as possible. Explain that there is a serious virus going around, in simple and straightforward sentences. Be reassuring and tell them that you will go and see them as soon as you are able. In the interim, try and arrange for groceries and repeat prescriptions to be delivered if possible, and for close neighbours to keep an eye out for anything unusual. You could look into becoming the person’s proxy for medical matters – so that their GP can speak to you. But you need to register with their GP to do so, and this is of course a very busy time. If you have already registered with the GP, then you can usually apply to be a proxy online.

You can also contact your local authority who will have local arrangements in place to support vulnerable people. They will also be able to offer help and advice.