Coronavirus: questions and answers

Updated on 1st April 2021

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 headings below to expand the relevant section.

Questions before getting a vaccine

What is the Covid-19 vaccination programme? 

Vaccines work by training and preparing the body’s natural defences (the immune system) to recognize and fight off (by creating antibodies) the viruses or bacteria they target. If the body is exposed to those disease-causing germs later, the body is immediately ready to fight them. 

The Covid-19 vaccination programme aims to protect those who are at highest risk from serious illness or death from Covid-19. 

The national Covid-19 vaccination programme, which began on the 8th December 2020, includes the Pfizer/BioNTech and Oxford/AstraZeneca vaccines. A third vaccine, Moderna, has also been approved to use and is likely to be used in the national vaccination programme soon. All three vaccines are effective in reducing the severity and length of symptoms from the Covid-19 virus. They are given in two doses. The first dose offers some protection; the second dose is required to complete the course. The current advice is the vaccines will have an effect on new variants (types) of Covid-19. Further government advice is available here. 

Vaccines are developed and are only available on the NHS once they have been thoroughly tested and approved by the independent Medicines and Healthcare products Regulatory Agency (MHRA) to make sure they are safe and effective. 

See here for who can currently get the vaccine. 

The vaccines are for adults over the age of 18 years. The Joint Committee on Vaccination and Immunisation (JCVI) is prioritising the first doses of vaccine for as many people as possible on the priority list. This will include many people living with dementia, who are over 65 and/or will be living with other long-term health conditions. 

Click here to read the statement from the UK Chief Medical Officers on the suggested prioritisation of vaccines. Click here  for the current NHS advice about the time between doses. 

Which Covid-19 vaccines are available? 

The national Covid-19 vaccination programme will provide you with the Pfizer/BioNTech or Oxford /AstraZeneca vaccine. Further details on how the Moderna vaccine will be included in the national vaccination programme are likely to follow shortly. Whichever vaccine you have, you will require two doses of it to provide the best protection. All three vaccines have been shown to provide protection against the Covid-19 virus.

Do I need to have the vaccine? 

Receiving the vaccine is not compulsory, but it is recommended. This is especially the case for people at highest risk of catching the infection and of suffering serious complications if they catch it. This includes older adults, frontline health and social care workers, care home residents and staff, and those with certain clinical conditions. When more vaccines become available, the vaccines will be offered to other people at risk, and to the population more widely, as soon as possible. 

Information on the Covid-19 vaccination first phase priority groups can be found here.  

What if I don’t want to have the vaccine? 

Receiving the vaccine is not compulsory, but it is recommended. If you are unsure about having it, take time to discuss with your health care professional, family and friends so you can weigh up the advantages and disadvantages of it for youIt is also recommended to look at trusted sources as found here.  

Do I have to pay for the vaccine? 

The vaccine will be available across the UK and it will be free at the point of delivery, according to need. 

How are the Covid-19 vaccines being made available? 

  • Through hubs at NHS hospitals
  • Through large community hubs established across the UK
  • Through local GP practices (and in some cases, home visits via the GP team)
  • In care homes
  • In some pharmacies

Your vaccination injection is via an appointment system only, and you will be contacted to make your appointment date and time.

The Pfizer-BioNTech vaccine needs ultra-cold storage at -70C, and particular arrangements to safely transport it. The Oxford/AstraZeneca and Moderna vaccines can be stored and transported more easily.

Do I have to consent to having the vaccine? 

Consent has to be obtained from the person receiving it before any vaccine is given. You will also be given a vaccination record card, with the date and time of your second dose. Before you have your vaccine, your vaccinator will discuss with you your medical history (including any allergies), answer any of your questions and ask you to sign a consent form before you have your injection.  

Covid-19 vaccination consent forms and letter templates for adults who are able to consent can be found here. You will be given this at the time of receiving your vaccine or you may want to download and view them before.  

What happens if an adult is unable to consent to their vaccine? 

Before the vaccine is given, consent must be obtained from the person receiving it. If they are unable to consent to the vaccine, then consent must be obtained via a ‘best interest’ decision (which is compliant with the Mental Capacity Act 2005). A ‘best interest’ decision is when someone is unable to make a decision for themselves, so the decision may have to be made for them. 

If you or a family member has registered Lasting Power of Attorney (LPA) for Health and Welfare for the person with dementia, you can make health decisions on their behalf, including whether they should receive vaccinations. When making decisions about your loved one’s care, it is important to get the views of doctors or other healthcare professionals in charge of their care. All treatment options should be clearly outlined so that you as the person with the LPA knows the benefits and risks of each option. You must also take the person’s previous wishes or views into account.

If there is no LPA for Health and Welfare in place, then healthcare professionals must make a decision in the person’s ‘best interests.’ This is based upon their previous wishes and decisions as well as close consultation with friends, family members or anyone else who knows the person with dementia closely.

The government has provided a number of consent templates and guidance for vaccinators. The below are examples that they have provided. These will be given at the time of discussing and receiving the vaccine, or you may want to download and view them before. 

  • Covid-19 vaccination: consent forms and letters for care home residents can be found here(This includes the consent form if you hold Lasting Power of Attorney) 
  • Covid-19 vaccination: consent form and letter for social care staff can be found here 
  • Covid-19 vaccination: consent form and letter for healthcare workers can be found here 

For more information on consent and best interest decisions, please see the Dementia UK leaflet on Capacity, here.   

Are the Covid-19 vaccines effective and what are the side effects?  

All three vaccines are for adults over the age of 18 years and have been shown to be effective in protecting against Covid-19. Further studies are being carried out to assess their effectiveness in stopping the transmission of Covid-19 and for how long their protection lasts for. There is a chance you might still get or spread coronavirus even if you have the vaccine. This means it is important to continue to follow social distancing guidance.

A very small number of people are at risk of an allergic reaction (anaphylaxis) when having the Covid-19 vaccine. This includes people with a previous history of allergic reactions to the ingredients of the vaccine. Before receiving the vaccine, people will be asked questions about their medical history and if they have serious allergies. For more information see here and here. 

If you are a carer who is pregnant or breast feeding, you might be wondering if you should have the Covid-19 vaccine. There is more detailed information for you here and here about the risks and benefits of receiving the vaccine.  

Will family carers be offered the vaccine? 

Those who are in receipt of a carer’s allowance, or those who are the main carer of an elderly or disabled person whose welfare may be at risk if the carer falls ill, are now eligible for the vaccine. People who are aged 50 and over are now eligible for the vaccine. This will include many people affected by dementia.  

Do I need to register as a family/unpaid carer?

Unpaid carers are in Priority Group 6 in the vaccination programme, with people in this group starting to be vaccinated right now. It is therefore important to consider accessing the Carers Register at your local GP surgery. Registering on this list will mean that  GPs will be able to vaccinate you to give you good protection against Covid-19, allowing you to continue in your caring role.

After signing up to this list, your GP can also identify the effects caring can have on your health, such as depression, stress, high blood pressure or pain.

Note that carers can also register themselves on the national Covid-19 vaccine booking system. You can access the link here

Accessing the Carers Register

All GP practices now have a Carers Register; registration forms can usually be requested from your own practice reception. Alternatively, Carers UK have created a template letter, which you can complete and send to your GP: Template_letter_to_register_with_your_GP. Your GP will then be able to update your patient record and help you to start getting the support you need.

Will health and social care workers be offered the vaccine? 

Frontline health and social care workers including those working in care homes are being offered the vaccine. See here, here and here for more information.

Will people living in their own homes be offered the vaccine? 

People are being offered appointments at community and hospital NHS hubs, in some pharmacies and at home for people who are housebound. If you are caring for someone who is housebound or even bedbound, it is advisable to contact your GP to find out what is available in the circumstances.

Will hospital patients be offered the vaccine? 

The first phase priority groups include older people who might be a hospital inpatient (see here for more information). 

Will care home residents be offered the vaccine? 

In line with the recommendations of the JCVI, one of the available vaccines will be rolled out to the priority groups including care home residents and staff, people over 80 and health and care workers, then to the rest of the population in order of age and risk, including those who are clinically extremely vulnerable. The vaccination programme for care home residents and staff has now started in care homes across the UK.

What difference will vaccines make to visiting people in care homes and hospitals? 

Both vaccines have been shown to be effective in protecting against Covid-19. Further studies are being carried out to assess their effectiveness in stopping the transmission of Covid-19

Will lockdown/restrictions affect the vaccine rollout?

Vaccinations are still taking place as it remains legal to attend medical appointments and to accompany a friend or family member to them. The NHS will contact you when it is time to be vaccinated. Before this happens, it is advisable to check that your registered contact details are up-to-date and that family carers are put down as next of kin to accompany the person with dementia, where appropriate.

Questions during the vaccine

Who is administering the vaccine? 

The NHS is administering the vaccine. To help ensure that it is able to deliver a large-scale vaccination programme, without significantly impacting on other vital services, the NHS is recruiting clinically-trained Covid-19 vaccinators.  It is also working with partners to build a bank of volunteers who can support vaccine services. You can find out more here.  

How are the Pfizer/BioNTech, Oxford/AstraZeneca and Moderna vaccines given? 

All three vaccines are given via a needle into the muscle in your arm or thigh in two doses.  Click here  for the current NHS advice about the time between doses. After your first dose you will be given an immunisation record card and will be contacted for when to return for your second dose. The second dose completes the course.

Will the Pfizer/BioNTech, Oxford/AstraZeneca and Moderna vaccines work on new variants (types) of Covid-19?

Currently the advice is the vaccines will have an effect on new variants (types) of Covid-19. Further government advice is available here.

Will the Pfizer/BioNTech, Oxford/AstraZeneca and Moderna vaccines affect the medication I’m taking?

GPs, vaccinators and other healthcare professionals can advise on whether any medication you’re taking will be affected by the vaccine.

How long does it take for the vaccine to work? 

After your first dose, you can have some protection from Covid-19. The second dose completes the course. No vaccine is 100% effective, so some people may still get Covid-19 after the vaccine, but its impact should be less severe. Click here for the latest NHS information about the Covid-19 vaccines . 

Questions after the vaccine

What happens after I have had my vaccine? 

You should be able to go back to your normal activities as long as you feel well. If your arm is particularly sore, you may find heavy lifting difficult. If you feel unwell or very tired you should rest and avoid operating machinery or driving. You should avoid getting pregnant for two months after vaccination.  

If you don’t feel well enough for your second vaccine dose it is better to wait until you have recovered to have your vaccine, but you should try to have it as soon as possible. You should not attend a vaccine appointment if you are self-isolating, waiting for a Covid-19 test or unsure if you are fit and well. 

More detailed information on the Covid-19 vaccination: what to expect after vaccination can be found here. 

If I have had the vaccine, do I still need to wear a face covering and follow Covid-19 safety requirements? 

Yes. To protect yourself and your family, friends and colleagues you still need to: 

  • Socially distance 
  • Wear a face covering 
  • Wash your hands carefully and frequently 
  • Follow the national and your local guidance. Please seehere for current national guidance 

If I have had the vaccine, will I be able to be in close contact with my loved one in a care home? 

At the moment it is unclear how having the vaccine will increase the opportunities for close contact by family members, for example hugs, holding hands, helping with personal care. Discussing with your care home manager what their policy and guidance is will provide you with more information.

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. 

With restrictions easing across the four nations and shielding coming to an end in some parts of the UK, this will be the first time that many families will be getting together this year, even if outside.  

If you live nearby to your relative with dementia, you could spend some time together in a local park or one another’s garden (weather permitting). If you are meeting up with them after a long time, you may like to bring with you items which foster reminiscence, such as a photo of a trip you had spent with each other. You can also do an activity which the person with dementia is still able to do; this could include painting flowers in the garden. Activities like this can give your loved one with dementia a sense of purpose and belonging. 

However, it is understandable that families affected by dementia may still be reluctant to go outside. Remember: do what makes you and your wider family comfortable and secure whilst adhering to the government guidance. 

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. 

Even though the vaccine rollout is continuing at pace, we know that some people will still be experiencing anxiety about the virus.  It may be better to rely on family, friends, neighbours or local volunteers to get shopping for you. Check local websites such as Next DoorIn 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. 

I think I may have Covid. What do I do?

If you have symptoms of Covid-19, which includes a high temperature, a new, continuous cough, or a loss of your sense of taste or smell, then please follow all the guidance on self-isolation referenced here and here. Home test kits can now be ordered by contacting 119; this is to improve accessibility for anyone who can’t travel to one of the more than 850 test sites set up around the country.

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’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?

As a customer, it is now a requirement to wear a face covering in shops, supermarkets, and shopping centres and when travelling by public transport. 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.

Will I be able to get supermarket delivery slots now that restrictions have tightened?

People in the extremely vulnerable category will be able to use an online service which will help people to request priority access to supermarket delivery slots and to inform their council they need help. Some people with dementia are in this category given their age and likelihood of having secondary long-term conditions. However, we believe that all people with dementia should be added to this category so that they can get the support they need. 

If you need help with shopping, reach out to family, friends and neighbours to get any supplies you may need. Community groups can also be another source of support and local shops may be able to deliver to you. 

I’m a bit unsure and anxious about what lockdown easing means for me and my relative with dementia

It’s understandable to feel unsettled but focus on the activities that you and your relative enjoy, within the government guidelines. Taking part in stimulating activities can ward off deterioration in the person with dementia and help to improve your own mood. Making sure that you stay in contact with people that you trust can also be a great way to feel more secure. 

If you need any further advice on how to work through any difficult feelings during this second lockdown, then please do ring our Admiral Nurse Dementia Helpline on 0800 888 6678 or helpline@dementiauk.org. 

I don’t know how to cope with sundowning in my relative, especially with all these restrictions being in the winter, when nights are coming in earlier

Issues around sundowning  can be prevalent in people with dementia– this is a term used to describe the changes in behaviour in the evening. Establishing a routine of enjoyable activities for you and the person with dementia can help to offset this. You can also have a bedtime routine to make the transition into night easier, such as listening to some gentle music. Blackout blinds could help to get the person with dementia to sleep as well. We have more tips on our leaflet here. 

What support is available to me and my loved one with dementia to cope with loneliness/isolation?

Draw on support you might have through your friends, family and other networks. Arrange for regular phone calls, or outdoor visits if they live nearby, check in and ask them if they can bring you some essential items. If your loved one is in a care home, please see our advice on this here. 

You can connect with other people affected by dementia through the online community, Talking Point. Carers can also contact other carers through Carers UK Forum. Services like the Volunteer Responders can be a source of company through phone calls and can get you to and from medical appointments. Even though shielding has come to an end in certain parts of the country, people who are clinically extremely vulnerable can still use an online service, where the option to request priority access to supermarket delivery slots and to inform your council if you need help is there. 

Can I form a support bubble with a person with dementia?

Our Helpline is getting many calls from families who are worried about relatives living apart, one of whom has dementia. Caring can be challenging so it is natural for you to think about how you can support other family members. Support bubbles mean that family members can join up to ward off feelings of isolation and loneliness, which are common in dementia, and to more closely help with any practical tasks, such as DIY and shopping.  A single adult household may be able to form a support bubble with a vulnerable household. However, please do check the individual guidance for the different parts of the UK to check what is currently allowed in your area.

Please remember that people living with dementia are currently not classed as clinically extremely vulnerable, unless they are also living with certain cancers and conditions affecting the immune system among others. If your relative is extremely vulnerable and has dementia, this may affect your decision to enter into a support bubble with them. It is ultimately however up to you and your relative to decide what is safest and most comfortable in the circumstances.

I am worried about my loved one’s dental hygiene

We know that people living with dementia have an increased risk of tooth decay and untreated gum disease. This may be due to difficulty in remembering or performing daily activities like brushing teeth, in addition to communication challenges which could make it difficult to express discomfort or pain. Some people with dementia may require support to maintain their oral hygiene routine.

If you are concerned about a person with dementia’s oral health, please consult a dentist as soon as possible; early treatment may avoid infection or resulting complications.

Dental practices should ensure that social distancing is maintained, and you can always phone the practice in advance to see what arrangements are in place to help you prepare and feel more secure.

For further information, please see our resources on mouth care here.

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 and the vaccine in exchange for money. How can we protect a person with dementia from people like this?

The Covid-19 vaccine is only available through the NHS by an appointment system, Click here for more information. The Covid-19 test is only available from trusted sources. Click here for more information.

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

What is the government guidance about visiting a care home

Rules around care home visits have changed as lockdown eases. England, Scotland and Wales are allowing designated or named visitors to care homes, but more family members will be allowed to visit for screened and outdoor visits. Visiting in Northern Ireland is decided by the care homes in response to how the virus is impacting an area.

It is advisable to check in with care homes before visiting to establish what arrangements they have in place. 

Please also do check the individual guidance for EnglandScotlandWales and Northern Ireland. 

Do I need to have had a vaccination before I can visit?

You do not have to have been vaccinated against Covid 19, although it is strongly recommended that all visitors and residents take up the opportunity when they are contacted by the national vaccination programme. 

I haven’t seen my loved one for a long time – what might I expect?

It is important to prepare for this visit as it is likely to be quite emotional. Take time to think about expectations. You might be hoping for a big reunion and need to prepare for the possibility that your loved one may struggle to recognise you, struggle to cope with their emotions or be having a ‘bad’ day.   

Such situations are likely to be extremely upsetting unless you have a strategy in place for managing this. Being prepared with an activity, a special time to reminisce about or a favourite song to listen to together can help connect you both.  

Do also consider the likelihood of your loved one having deteriorated mentally and physically since you last saw them and how this will make both of you feel. It may help if you ask the care home manager to advise you if they think this is the case beforehand. 

What types of visits are there?

Indoor visiting (excluding exceptional circumstances) may be denied whilst there is a local outbreak in the region or home. This may be very frustrating and distressing but having regular and open conversations with the care home team is important, as well as how you can remain in touch with your loved one and receive updates about their care and wellbeing. If you are feeling distressed and need support, then the Admiral Nurse Dementia Helpline can help you work through these feelings and plan a course of action.   

The home will also confirm what gifts you can bring in, and if they have to be cleaned with sanitiser before being given.   

How can I make the most of ‘outdoor’ visits?

It is important not to under-estimate the value of being outside with each other. Taking your loved one for a walk or in the wheelchair is a very important aspect of their care. Being outside is known to improve emotional well-being and promote a sense of calm and peace. Enjoying the smells of flowers, noticing the changing seasons, listening to birdsong, and watching out for wildlife can be very therapeutic. Sharing food and drink together can increase bonding so think about taking a picnic with suitable finger foods or a flask of a favourite beverage. 

How can I stay in touch with my loved one in a care home 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 FaceTime 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 am not happy with the care that my loved one is receiving: what do I do? 

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

Care home visiting guidance from EnglandScotlandWales and Northern Ireland all identify the importance of a relative/family carer being able to visit if their loved one is dying.   

Discuss with the home their end of life visiting procedures, as well as how and when they will update you about your loved one’s condition. Speak to the home about what you think is important at this time. Perhaps there is a particular type of music your loved one would enjoy listening to, or a favourite night dress or blanket. Maybe the smell of your perfume or aftershave on the bedspread or your picture by the bed will be a comforting reminder of you when you are unable to be there.   

You may feel feelings of loss, grief and bereavement during this time. This is normal, but you might find it helpful to discuss and share with a friend or family member how you are feeling. Our Admiral Nurse Dementia Helpline is also there for you to discuss any feelings of grief you are experiencing.   

Find out more about our campaigning work during the coronavirus pandemic here.    

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.

I am worried about my loved one/relative who is in intensive care with Covid-19.

The Department of Health and Social Care announced January 2021 that patients on intensive care units will receive potentially life-saving treatments for Covid-19. A new study showed that the drugs tocilizumab and sarilumab (used to treat rheumatoid arthritis), combined with a steroid, such as dexamethasone, reduced the risk of death by 24% for critically ill patients and time spent in intensive care by up to 10 days.

This will make a significant difference for people with Covid-19 on intensive care units.

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 easing. 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.