Coronavirus: questions and answers

Updated on 25th September 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 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. 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.

It is advisable to book in for a flu jab to protect you and your family members. In England, anyone who needs to shield and/or is over 50 is eligible for a free flu jab. Scotland, Wales and Northern Ireland are also running their own flu campaigns. People who are not eligible for a free flu jab can pay for one at pharmacies and supermarkets.

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’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.

You can have this conversation in person whilst social distancing, if you are comfortable and able to do so, or if the person is in your support bubble. However it is understandable if you are still feeling anxious about the current situation and choose to reduce contact with others. In this case, you can have the conversation via telephone or a video chat.

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

There are different rules throughout the UK around wearing face coverings at the minute. Do check with your country websites what the situation is like where you are. People with dementia can be exempt from wearing face coverings due to reduced cognition. Do as much as you can and remember that you are best placed to know what is most manageable and safe for you and your relative.

If you’d like to encourage your relative with dementia to wear a face covering, 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 covering is needed to protect them. The person with dementia only needs to wear a covering where necessary, and wearing one all the time could be upsetting for them.

I’m a bit unsure and anxious about what the lockdown restrictions mean for me and my relative with dementia

There are still restrictions in place throughout the UK, but people are still allowed to do more than they were at the start of the pandemic. Gradually re-introducing parts of your old routine to your lockdown routine and keeping active can provide some comfort, stability and improved mental health and wellbeing. Although your choices may be limited, try to focus on the things you enjoy. Remember that you are best placed to know what is comfortable and manageable for you and the person with dementia.

What support is available to me now that shielding has been paused?

If you have been using services set up specifically for shielding or self-isolating individuals, you should keep in touch with your local authority about what services will remain in place and what you need to take responsibility for. Some forms of support – such as priority supermarket delivery slots and some local volunteer schemes – will continue. The Government will continue to maintain the Shielded Patients List, monitor the virus continuously and if it spreads too much, people on the list may be advised to shield again.

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

This is 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. We wrote to Matt Hancock, Secretary of State for Health and Social Care, with our recommendations for safe visiting for care homes. We believe this is achievable if there is a collaborative approach between the government, local public health teams, care providers and families. Read the full letter here. Dementia UK is also part of One Dementia Voice.

We have put together some common questions and answers about care homes and coronavirus here . This includes links to the current England, Scotland , Wales, and Northern Ireland care home visiting guidance.

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.

I’m feeling a bit anxious about my visit. What if my relative doesn’t recognise me, or if they get upset during the visit?

Visiting in the current circumstances is very different to before. Discuss with the home how they can prepare and support your loved one before and after your visit. It may be difficult for your relative to recognise you if you are wearing PPE, and social distancing may stop you from being able to touch them to show your affection. Whether you are wearing a PPE or are behind a protective screen, some tips for communicating include speaking loudly, clearly and in short sentences. Use your body language to communicate affection, such as ‘miming a hug’ or ‘blowing kisses’.

It is possible that your loved one may become upset during your visit. Listen to why they are upset. If it feels right, apologise for why you have not been able to visit by reminding them that a virus is going round, and reassure them of your love, care and affection. Bring in gifts and mementos to help keep in touch, and include the family; for example, grandchildren’s drawings, photographs of friends and relatives, and cards with short written notes. You could take a photo during the visit, and ask the care home staff to display this clearly in the person’s room.

Regardless of how your visit went, make sure that you have someone to speak to afterwards, such as a friend, Admiral Nurse or member of the care home staff.

I am not happy with the care that my loved one is receiving: what do I do? 

There may be times when you are not happy with the care your loved one is receiving or how the care home is communicating with you. The coronavirus outbreak has challenged us all in extraordinary ways. It may be helpful to make a list of your concerns and consider if they are related to the coronavirus social distancing requirements or something else. Arrange to speak to the home manager, saying what you want to discuss with them and why. Ask for a plan of action from your meeting, so that you can work together to support your loved one.

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.

Who can visit and for how long varies from hospice to hospice, so we advise discussing with the individual hospice about what their visiting arrangements are. The national charity for hospices, Hospice UK has a useful link here to hospices individual visiting policies.

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

Am I allowed to visit my loved one or attend outpatient appointments in hospital?

Visiting and attending outpatient appointments in health care settings such as hospitals during the coronavirus outbreak is subject to the local discretion by trusts and other NHS bodies. All hospitals have visiting and outpatient appointment policies which will outline who can visit/attend and for how long. There will be restrictions in place as well as the requirement to wear face coverings and following infection control precautions (such as handwashing and not visiting/attending if you have symptoms of coronavirus). There is information about face covering exemptions including exemptions badges that you can download.

Check your local hospital policy to find out what their visiting/attending outpatient appointment guidance (e.g. on their website). If necessary, give the ward or the department a telephone call to check their restrictions and requirements. You may be offered a video or telephone outpatient consultation. There is also national guidance for compassionate visiting at the end of life.

How can I support my loved one  in hospital?

Agree a communication strategy with the hospital ward – Many hospitals have a procedure in place to contact agreed family members with updates about patients. Or you may need to find out the best time to make a phone call to the ward for an update, or if you can join in a video conference meeting about your loved one. Find out what the hospital can offer.

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 still using virtual technology to bring people closer together. Check with the nursing teams if video or telephone 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, frailty teams or patient liaison teams which can offer extra support and ways for you to communicate with your loved one.

Carer Passport – If you are a carer for someone with dementia, it may be worth just checking what the current policy is for carers. Many hospitals have implemented a carers passport scheme, which identifies a carer and can offer a range of support such as parking, refreshments and even extended visiting.

Living alone

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

If you are supporting someone with dementia who lives on their own, they may have difficulty understanding what has changed in terms of lockdown restrictions. It is important to keep in touch, take time to explain changes and make information available to them in a simple and accessible way. You can repeat this as appropriate. People with dementia may also lack awareness of, and be less able to, report coronavirus symptoms because of communication difficulties – you should be alert to any signs of symptoms of the virus in the person you are supporting.