Coronavirus: questions and answers

Updated on 9th April 2020

During these unprecedented and uncertain times, all of us at Dementia UK are working hard to ensure that families with dementia feel supported and listened to.

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 are asked. Our Helpline Nurses can 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.

Living at home

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 to both of your mental health. Looking out for updated guidance from the NHS and the government at certain times of the day can allow you to concentrate on providing the best care possible and help to reduce anxiety.

Set up different areas around the house to watch favourite films, listen to music, do jigsaws, and perhaps follow yoga or aerobics videos from the internet.

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, all health care workers will continue to work as per normal. While care agencies have sufficient staff to do so, they will carry on visiting the people on their roster.

The Admiral Nurse Dementia Helpline is there to support people who are feeling distressed, 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?

It’s important to stay connected to people. Set up regular video calls with friends and family so you’re staying in touch and have something to look forward to. Keep yourselves entertained and active, even if this just means a walk around the garden or even the home.

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.

We know that services are very busy, but you can try and schedule in an online grocery delivery or ask friends and family to do this for you. The supermarkets are introducing systems of prioritising vulnerable people but we know that some families with dementia have had difficulty booking slots (for further advice on this please see here). They can deliver it to your doorstep so no one needs to come inside your home.

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

Advice on maintaining good hygiene is particularly important in these circumstances. You can follow Public Health England’s guidance, which recommends regular hand washing as well as avoiding close contact with those who are unwell.

If you are worried that medication may run out, consider ordering it in advance and storing it in a safe place. This advice also applies to any medical aids, such as inhalers for people with asthma. Keep spares of these in the home wherever possible.

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?

It is understandable that people with dementia and their families will find it frustrating and challenging around these confinement measures. Not relying on usual support networks and activities, and limited access to respite, can be a very difficult situation to manage.

In these circumstances, it is important to get reassurance from the nurses on our Helpline with any instances of distressed behaviour; particularly as this could be a symptom of other underlying conditions, such as delirium.

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

Explain the current situation to the person with dementia using simple and short sentences that you can repeat on a frequent basis, rather than trying to explain things in detail. For example, you can tell them that there is a flu outbreak and people are being advised to stay home. Having this message written on notes throughout the house may also help, particularly on the front door in line of sight. 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.

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 changes to the situation and the advice issued by the government and Public Health England. Pass on to them the phone number for the Admiral Nurse Dementia Helpline: 0800 888 6678.

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. You can 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 near the person with dementia’s 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 that the person with dementia can press if they feel concerned by a caller. Family members and emergency services can be notified when this happens.

My husband is in the late stages of dementia and has multiple physical health problems which means he is totally dependent on others to meet all his needs. I have tried to get an online shopping slot but have been unable to do so. I have tried to get into the local supermarkets in the dedicated shopping hours for vulnerable people but was turned away due to my husband not being on the vulnerable people register. What can I do?

This pandemic has happened very rapidly and as such the way systems work has been changing on a daily basis. Dementia UK understands the challenges that people with dementia face in their day to day lives, and the charity is working tirelessly to ensure that people with dementia across the trajectory of the condition get the support they should be entitled to. In this particular case, we see the inclusion of people with dementia who are in the later stages of the disease process on the current list of extremely vulnerable people as a key indication that we have achieved support.

The usual way to get onto this list of vulnerable people is via your GP but these are unusual times and it may be difficult to access one who is able to add your husband to the list.

If you are living in England, the following link on the Government website will allow you to register your husband as vulnerable. Click here and in the first paragraph there is a link to the registration form, you can click this and fill in the registration form to classify your husband as an extremely vulnerable person. As he has health issues and late stage dementia he could come under the rare disease section

Once on the register you should then have the evidence you need for on-line shopping and other support. Whilst the register is updated, you can then take a copy of the completed form, in either a print format or take a picture of it on your phone, so you can produce this as evidence in case you need it.

These are extraordinary times so we acknowledge that the above should be viewed as an interim measure until such time as we can ensure that there is wider recognition of people with dementia on a vulnerable list. We understand discussions are still ongoing between the governments in Scotland, Wales and Northern Ireland and retailers to ensure more vulnerable people have access to food deliveries. We will continue to monitor this situation.

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 really worried that my relative has dementia but I am unable to go to the GP to establish this because of the orders on social distancing and isolation.

Services are stretched now more than ever. GP surgeries are the primary route to the diagnosis for dementia as they carry out the preliminary tests to rule out potentially treatable conditions that may mimic symptoms of dementia. Once these tests are completed and no obvious reasons for the symptoms are established, the GP may then refer to a memory assessment service. However, given the sensitive and complex nature of a diagnosis of dementia, it is advised to wait until either restrictions on visiting GP surgeries have lifted or the pandemic has ended before starting the process of getting a diagnosis.

People can contact the Admiral Nurse Dementia Helpline if they have any questions around the symptoms that their relative is showing. They can also contact the Helpline around ways to mitigate against the changes they observe in their relative and support them as much as possible.

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 both of these circumstances, antibiotics or other medication can be prescribed to treat the condition and alleviate the symptoms the person is experiencing. If you are currently self-isolating, you can ask a close friend or trusted neighbour to pick them up for you or arrange for a pharmacy to deliver these if they offer this service

Care homes

Should I make arrangements for family members with dementia to live with me when they are currently in a care home?

Consider that a change in environment may lead to increased confusion and agitation for your family member with dementia. You can ask your care home whether it is possible to keep in touch using video calling technology such as Skype or FaceTime.

My mother is in a care home and I usually visit at least once per week but the home is now saying they will not allow any visitors at all due to the coronavirus. I am worried that my mother will think I have abandoned her and she will get distressed.

It can be very difficult for people living with the effects of dementia to understand the seriousness of the pandemic and also what must be done to prevent its spread.

Here are some tips that Admiral Nurses recommend to families in a similar position to yourself:

  • Explain the current situation by phone using very simple and short sentences that can be repeated on a frequent basis e.g. there is a flu outbreak and for the safety of people in the home it has been decided to stop visitors temporarily
  • Ask the staff to place a note on the inside of the bedroom stating the same message “there is a flu outbreak and people are being advised to stay at home”. This should be at eye height
  • Having regular phone calls can work better than face time for people who forget how to use technology. Try and have a regular time for the call so a routine can be established e.g. at 10am to reinforce messages about why you aren’t visiting and speak about her plans for the day
  • In your call encourage your mother to engage in things she enjoys such as music, hobbies, reminiscing about past events
  • You can also consider sending through some personal items in the post to your relative in order to stimulate their memories and to help them feel connected. Posting a photo album of holidays or grandchildren for example can be a good way to do this. A simple letter can give the person with dementia something to hold and to look back on, as well as help with reconnection.

Try and be reassured that staff will be following strict guidelines on preventing the virus from spreading in the home.

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

Different care facilities will have different policies in place to allow families to communicate with each other at this time. First consult with the care home to see if they can offer any alternatives to stay in touch.

For additional advice on how to connect with a relative, you can refer to the previous answer.

Hospices

My relative with dementia is currently in a hospice setting. 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.

End of life care can be a huge practical, emotional and spiritual challenge for families with dementia, and the coronavirus outbreak can place even more stresses on family members. In these circumstances, it is important to talk to the hospice where your relative is based to find out what visiting allowances you are able to have.

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 new ways of coping.

Hospitals

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

With increased cleaning schedules, the use of personal protective equipment such as gloves, masks and aprons by hospital staff and confirmed hospital cases likely to be in isolation, the risk of contracting the virus whilst in hospital is probably lower. They are also in a very good place to get immediate, high quality care, and the specialist support they need.

Living alone

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

Speak to them as often as possible. Explain that there is a 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 to be delivered, repeat prescriptions 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.