Frequently asked questions about coronavirus and useful organisations

Here are answers to some frequently asked questions (FAQs) from people affected by dementia, as well as a list of organisations that can provide information and advice during the coronavirus pandemic.

Alzheimer's Society is supporting people affected by dementia through the coronavirus pandemic.

Frequently asked questions about coronavirus and dementia

Why is my care home only offering one kind of visit?

The current guidance for England (which applies up until 18t July 2021) says that care homes should be enabling three different types of visits. These are:

  • up to five named visitors (children under two are not counted)
  • essential caregiver
  • other friends and family.

This does not necessarily mean all three types of visits must be supported for each resident. The essential caregiver is only for those with higher needs, for example.

From 19 July 2021, the government is lifting restrictions that limit each resident to five named visitors.

We will update this FAQ when we have more information.

Read more about the type of care home visits that are allowed.

What happens if my loved one’s care home has banned all visits?

Sometimes there will be good reasons - like a coronavirus outbreak - why the home cannot offer the visiting that families would like. But under the new guidance for England, a care home should not put a 'blanket' ban in place.

Care homes should make an individualised risk assessment for the resident, which should include the risks and benefits of proposed visits. This should also address the resident’s rights. The individualised assessment should be discussed and agreed with you. 

There are exceptional circumstances - at end of life and for an 'essential caregiver' - where visits should be enabled even in an outbreak.

Read more about care homes allowing visits.

How can my family challenge a decision on care home visiting?

You should try to resolve any issues by talking with the care home manager first.

If you then need to challenge a decision, you should contact the adult social services team in your local council first. The government has published guidance on this.

Alternatively, the Care Quality Commission (CQC) has regulatory powers that can be used if you have concerns over visiting. All decisions should be taken in light of general legal obligations, such as those under the Equality Act 2010 and Human Rights Act 1998, as applicable. 

You can contact the CQC online or by calling 03000 616161.

If needs be, you could also make a formal complaint to the care home using their complaints procedure - which they must tell you about. 

If that doesn’t resolve things you can complain to the local authority if they are paying for the care and then (or directly if the care is self-funded) to the  Local government and social care ombudsman.

Read more about how care homes are managing visits.

Who decides who are the named visitors (and can they change)?

The care home should ask each resident who they would like to be their named visitors. If the resident lacks the mental capacity to make this decision, the care home should discuss this situation with you. A named visitor can only be nominated by someone else if this is in the resident’s best interests, in accordance with the Mental Capacity Act 2005.

Where necessary, social workers can support these conversations between you and the care home. For example, they could help resolve any issues or concerns, and to ensure professional support and oversight where required.

Read more about the visitors allowed to care homes.

I work in a care home and have just had the vaccine. Does this mean I don’t need to worry about taking precautions?

Absolutely not – it’s really important to continue following the guidance for the following reasons:

  • It takes several weeks after having the vaccine to develop protection against coronavirus. This is different to a medicine that works straight after you take it. 
  • To get full protection a person needs to have two doses of the vaccine, which for most people will be at least 12 weeks between the first and second. We don’t yet have a complete picture of how immune a person is after only one dose of the vaccine or how long this immunity will last – although it’s likely a person will have quite a lot of protection during the period between the two doses.
  • People who have been vaccinated may still be able to pass on coronavirus to other people. 
  • Although the vaccines work extremely well, they’re not 100% effective. There will be some people who have the vaccine who do not develop a high level of protection against the virus. It’s difficult to predict who these people will be.

Having had the vaccine is not a reason for anyone to lower their guard. We all need to continue to take care to reduce the risk of COVID-19 transmission.

Read more about coronavirus vaccines.

Are the new coronavirus variants a cause for concern?

Scientists continue to research and understand how coronavirus changes and what these changes mean.

Coronaviruses change their genetic material (mutate) all the time, so there are already thousands of variants of COVID-19. Most mutations have little effect but sometimes a new variant can spread more easily, cause more severe disease, or be less protected against by vaccines.

Even if you have already had both doses of the vaccine, there are measures you can continue to take to reduce the number of new cases of the variants. The measures are:

  • reducing the number of people outside your household that you see, and for how long you see them – keeping a safe distance from them where possible
  • wearing a face-covering or mask
  • regular hand washing
  • letting fresh air in
  • following guidance (for example, on meeting up) where you live.

The vaccines approved in the UK seem to work well against all variants of concern currently circulating in the UK population, providing a person has had both jabs. 

Scientists are already working on revised versions of the current vaccines to protect against the latest variants. Over the longer term, the UK may well develop a rolling vaccine programme, a bit like for annual flu vaccinations, where people get vaccinated every year to protect themselves from the newest coronavirus variants.

Read more about coronavirus vaccines.

Are people with dementia at higher risk of catching coronavirus?

There is still so much unknown about coronavirus and we’re still learning about it. So, unfortunately, this is a question that we don’t yet have a definite answer to.

A person living with dementia who has memory problems or confusion may struggle with the guidance around coronavirus. This includes measures to reduce the risk of infection, like frequent handwashing or social distancing when outside. This may mean that, without help to stay safe, they are a bit more likely to be infected with the virus.

For a person with dementia in a care home, evidence suggests that they are at higher risk of getting coronavirus. This is partly because frailer older people have weaker immune systems that are less able to fight off infections.

Many care homes have sadly become infected because of the difficulty in keeping coronavirus out. The person may catch coronavirus from another resident, from a care worker, or from a communal surface with the virus on it.

Read more about dementia and coronavirus risk.

Can COVID-19 cause dementia?

We don’t know for sure.

Research shows that coronavirus can get into the brain, so COVID-19 is definitely not just a disease of the airways.

COVID-19, especially severe disease with a hospital stay or intensive care, is also linked to the following up to six months later:

  • anxiety 
  • depression
  • stroke
  • dementia – less often, and closely linked to delirium.

Anxiety and depression are known symptoms of ‘long COVID’. They are probably a reaction to being unwell or in hospital. Depression, in particular, might increase later dementia risk. Stroke is a common direct cause of vascular dementia.

Delirium – a common early symptom of COVID-19 in older people – is known to trigger dementia, ‘unmasking’ an underlying brain disease such as Alzheimer’s, and tipping someone over into overt symptoms.

Read more about rehabilitation and ‘long COVID’.

Does low vitamin D raise the risk of coronavirus?

Scientists don’t yet have the answer. We know vitamin D is needed for healthy bones and muscles. Whether it also fights off coronavirus is less certain. It matters because people make very different levels of vitamin D in their bodies.

We make vitamin D when we get sunlight on our skin. People who are outside less – such as people living in care homes – will not make as much. People with dark skin make vitamin D more slowly even when outside, and so have lower vitamin D levels too.

People with high melanin (pigment in their skin) are among those more likely to get severe COVID-19 disease if they catch coronavirus. 

Researchers have looked at coronavirus around the world and found low vitamin D levels in countries with more severe COVID-19. Studies of hospital patients confirm this. The studies do not prove that low vitamin D leads to more severe COVID-19.

You can increase your vitamin D levels by taking in more in your diet or taking a tablet of vitamin D (supplement). Too much vitamin D can be harmful, so talk to your doctor if you’re thinking of taking a vitamin D supplement that contains more than the NHS-recommended daily amount. The amount of vitamin D should be clearly shown on the product label.

Before coronavirus, the NHS recommended vitamin D supplements for adults who are not often outdoors, or those with dark skin. This was to make sure they were getting enough vitamin D to support healthy bones and muscles. So if you’re in a higher-risk group for vitamin D deficiency, you may already be taking extra. It’s not clear whether extra vitamin D will help fight off the virus. 

Read more about dementia and coronavirus risk.

The person I care for is in denial about coronavirus. What can I do?

Denial is a common psychological reaction. It can help someone who is trying to cope with a difficult situation that may otherwise make them feel afraid, depressed, or worried. It’s not a deliberate attempt to deny reality – it is likely that the person isn’t even aware they are in denial.

If someone doesn’t acknowledge what is happening, there is usually little point in repeating the same information in the same way. Focus on supporting them to follow the important guidance to keep them and others safe. They don’t necessarily need to understand everything about coronavirus to make changes, particularly about handwashing, being careful when outside or having visitors.

It might help to use different ways to explain the situation in a way that the person is more likely to take on board. For example, talk about the ‘new government guidance ’ or ‘what the doctors have said’.

Sometimes people can be more willing to accept advice from certain family members, friends, or professionals. Ask their full support network – friends, family members and neighbours – to gently reinforce prompts about being careful when they see or speak to them.

People with dementia often rely on set routines; they may have got used to not going out and be worried about leaving their homes.  People with dementia can lack confidence or self-esteem, and due to government restrictions, they might be out of practice with social skills.  

Think about how to gently ease them back into their old routines, or create new ones together. They might find going to the shops or public places overwhelming, so consider going out for shorter periods and at times which are less likely to be busy.  

In situations where mask-wearing is still recommended – such as in crowded places like on public transport – try to communicate the need for a mask in a way where the person won’t feel they have been ‘told off’ or told what to do. Reassure them that this is something we all face together and it’s not something specific to them. They are not alone.

Read more about staying safe from coronavirus and reducing the risk of infection.

Can I still make a Lasting power of attorney if restrictions return?

Yes – you are able to make Lasting power of attorney (LPA) even if government restrictions return.

Making an LPA involves getting signatures. You may find this more difficult as some people continue to limit the number of people they are in contact with.

The Office of the Public Guardian (OPG) is the government team that deals with LPAs. They have produced some useful guidance about how some of these difficulties can be overcome.

For more information about how to make an online or paper LPA, visit the OPG website or call them on 0300 456 0300

If you don’t have access to the internet or can’t complete the forms online, we have a free digital assistance service to help you. Our trained volunteers will fill in the LPA forms for you using the OPG online tool. They can’t offer legal advice. 

Our digital assistance service continues to operate during the pandemic. Call our support line on 0333 150 3456 for more details.

To make an LPA you will need to be able to make your own decisions (have mental capacity). This is very important. So if you want to make an LPA and are beginning to struggle with making decisions, the sooner you do so the better. 

Read more information about Lasting power of attorney (LPA).

I have dementia, so what happens if my partner gets coronavirus?

If your partner gets symptoms, you must both self-isolate (stay at home, take special precautions and not let anyone visit you). This also means neither of you should visit the shops or pharmacy. When you need something, such as food, essential provisions, or medicine, you should order them by phone, online, or ask someone else to drop them off at your home.

This NHS guidance page has a section on protecting yourself if you are considered ‘vulnerable’, for example aged over 70, and living with someone who has symptoms.

If your partner provides essential care for you, it can be useful to put a plan in place with friends and family, in case they becomes unwell. If you need help with activities (such as washing, dressing or eating and drinking) and there is no one else who can provide this, then contact your local authority.

If you are considered ‘extremely vulnerable’ due to another health condition (as well as dementia), you should have been contacted by your GP and given a number to call for help. The NHS has listed anyone who counts as ‘extremely vulnerable’ and what help is available. You can also register for help you may need including help with food, shopping deliveries and additional care.

Read about the support Alzheimer's Society can offer you during coronavirus.

Where can I find activities to keep someone with dementia from getting bored or frustrated?

Think about the activities the person has always enjoyed and look at ways to adapt these. Even when it’s not possible to go out and meet up with other people, there are ways of keeping someone active and engaged with activities they enjoy.

These include suggestions in and around the home as well as using digital technology and online activities. 

Read more about activity ideas during coronavirus for people with dementia.

I’m staying at home and now worried about getting food in. What should I do?

Check individual supermarkets’ websites or call their customer service lines to find out if they are still offering special arrangements for older and vulnerable people.  You could also ask someone else to help you or do this for you.

The major supermarkets have said they are changing their instore rules following the new guidelines but have not mentioned any changes to their online deliveries.  Many also offer a ‘click and collect’ option online, which could be an option if there is someone (family member, friend, or neighbour) who could pick up your order for you. 

Local grocers and convenience shops may also give priority to vulnerable people in their area or be able to arrange deliveries. You could try giving them a call.

See what community volunteer groups are running in your area. These could be set up by your parish council, local churches (or other faith communities), or a group of local people. They will be able to help with essentials for vulnerable people. To find schemes in your local area visit Neighbourhood Watch, COVID-19 Mutual Aid UK or contact your local authority.

If someone offers to help you, they should do this free of charge. You should not be asked for any money. You can find more information about spotting the signs of COVID-19 scams.

Read more about shopping during coronavirus for food and other essentials.

Can I travel abroad?

A traffic light system is in place for international travel. This shows which countries are on the red, green and amber lists, and what rules must be followed when travelling to or from those countries. For example, you may need to take a Covid test or book a ‘quarantine hotel package’ for when you return.  It is important to note that the status of each country can change at short notice.

You can find out more about this on the GOV.UK website.

There are many other things to take into account when wanting to travel abroad if you have a diagnosis of dementia.  This includes the type and length of holiday that might be most suitable, as well as making sure you are insured for the trip.

Read more about travelling and going on holiday

Other useful organisations and information

Select the relevant category below to see organisations that can provide more support and information.

Activity ideas

AcTo Dementia 

Independent site that provides guidance on accessible touchscreen apps for people living with dementia. An ideal resource for anyone affected by dementiato find and use apps on a tablet computer for entertainment. 

BBC Music Memories 

This website is designed to use music to help people with dementia reconnect with their most powerful memories.  

The site also has BBC Memory Radio and these are also available on BBC Sounds – just search for Memory Radio, and on Alexa devices – just say ‘Alexa, ask the BBC for Memory Radio’. 

Dementia Diaries  

The Dementia Diaries website collates and shares audio diaries that have been recorded by people living with dementia. You can listen to people’s diary entries online. People who have dementia are also encouraged to sign up to create their own diary entries. 

Life Story Network 

Provides advice and resources about life story work 

Playlist for Life 

Charity that helps people with dementia create a unique and personal music playlist.  

We are undefeatable

A movement to support people with long-term health conditions, developed by 15 leading charities. Aims to support and encourage ways to be active that work with each person’s conditions, not against them. 

Health and wellbeing

Cruse Bereavement Care 

Offer support, advice and information when someone dies. Cruse also work to enhance society’s care of bereaved people. 

tel: 0808 808 1677 

email: [email protected] 

Mind

Charity offering information and advice on all aspects of mental health. Provides a range of support services through local Mind associations. 

tel: 0300 123 3393 (helpline 9am–6pm weekdays) 
email: [email protected] 

NHS

NHS health information and advice on coronavirus. Covers symptoms, hygiene, social distancing and self-isolation. 

NHS 111 

NHS 111 online

https://www.nhsdirect.wales.nhs.uk/SelfAssessments/symptomcheckers (Wales) 

https://www.publichealth.hscni.net/news/covid-19-coronavirus (NI) 

NHS Every Mind Matters

Advice from Public Health England to support your mental health while staying at home. 

Practical support and guidance

Carers UK 

Advice on creating an emergency plan for family carers.  

Citizens Advice 

Citizens Advice provides free, independent, confidential and impartial advice to everyone on their rights and responsibilities. To find your nearest Citizens Advice, look in the phone book, ask at your local library or look on the website. Opening times vary. 

The Silver Line

A Helpline that offers information, friendship and advice. Callers can be linked to local groups and services and offer regular friendship calls. 

Tel: 0800 4 70 80 90 – open 24 hours a day, 7 days a week 

UK Government

UK Government website on coronavirus (COVID-19) and what people need to do. 

Universal Credit – Government pages 

Information on benefits and coronavirus. 

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