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

Will care homes be opened up further (and when)?

The latest guidance – effective from 12 April 2021, comes as step 2 of the roadmap out of lockdown for England. The government has concluded that data shows that it is safe to allow more named visitors, including young children. This follows some loosening of restrictions on indoor visits from 8 March.

The next step of the roadmap is due on 17 May at the earliest. The government will then set out a plan for the next phase of visits for people in residential care.

Read more about when care home visits are allowed.

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

The updated guidance for England clearly says that care homes should be enabling three different types of visits. These are:

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

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

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 two 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.

Can I take the person with dementia out of their care home for a coffee or walk?

Yes. The latest government guidance in England says that residents can leave a care home with a named friend or family member, for example for a walk in the park, or to visit a pub garden, outdoor café or family garden.

In order to do this, the resident and all visitors should have taken a rapid coronavirus test just before. Everyone’s test must be negative (not infected).

The resident and family member/friend should follow national guidelines when outside the care home. They can go indoors only to use toilets and they should avoid public transport if possible.

Before 4 May 2021, any resident taking an out-of-home trip needed to self-isolate for 14 days afterwards, in case they brought coronavirus back into the home. Under the latest guidance they no longer need to isolate.

Read more about care homes and outdoor visits.

I am aged 59 with young-onset dementia but otherwise healthy. When will I get offered the coronavirus vaccine?

Because you have young-onset dementia, you will be in the priority group 6, which comes between people aged 65 to 70 (group 5) and people aged 60 to 65 (group 7).

The government has not yet set a date for vaccines to people in group 6. Their only target at present is to have completed groups 1 to 4 by mid-February. So it’s most likely you’ll be offered the vaccine sometime during late February or early March, if the vaccination programme goes as planned. 
 
People living with dementia who are younger than 65 will get the vaccine because of their dementia rather than their age. Although many people who have died from COVID-19 have had dementia, this is because many of them were already very old, unwell or living in care homes, which have been very badly affected by coronavirus. If you are otherwise relatively healthy and younger than 65, your risk of having severe COVID is much less than for older people.

Read more about coronavirus vaccines.

I work in a care home and have just had the vaccine. Does this mean I don’t need to worry about social distancing with my friends anymore?

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 immunity to 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.
  • We don’t yet know if a person who has had the vaccine can pass the virus on to others. We only know that the vaccine prevents the person who has it from getting seriously ill. So, it’s possible that a person may still have the virus in their body and pass it on to someone who doesn’t yet have immunity.
  • 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 immunity to the virus. It’s difficult to predict who these people will be.
  • Lastly, it’s really important that everyone has the same set of rules to follow. Otherwise the system becomes unfair to people who haven’t had the vaccine yet.

Having had the vaccine is not a reason for anyone to lower their guard and not follow the rules. We all need to continue to be careful on measures like not mixing households, social distancing, handwashing and wearing a face covering.

Read more about coronavirus vaccines.

Are the new coronavirus variants a cause for concern?

In short, yes – but we’re not sure how much yet.

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

Three variants are currently of concern. They were first detected in:

  • UK
  • South Africa
  • Brazil.

The UK variant (at least) is more easily transmitted between people. At the moment, this is the main type of coronavirus in the UK population and the other variants are still quite rare.

When a virus is transmitted more easily, it means that people must be extra vigilant with measures to reduce the number of new cases,  even if you’ve been vaccinated already. The measures are:

  • social distancing
  • wearing a face cover/mask
  • regular hand washing 
  • letting fresh air in
  • following guidance (for example, on meeting up) where you live.

On the issue of vaccines, the current ones were designed to work against earlier variants of coronavirus. The three vaccines approved in the UK seem to work well against the UK variant. It’s not clear yet how well the vaccines work against the other two variants. It’s possible that they will work well, although not quite as well as they do against the UK variant.

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 rules and restrictions around coronavirus. This includes the important actions we’re all taking 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 virus on it.

It has been widely publicised that many care homes have had difficulty getting enough personal protective equipment (PPE) for staff and, more recently, getting both residents and staff tested for coronavirus. Talk to the care home about any concerns you have and how you can support the person from a distance.

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 and cause problems direct, 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 those who are shielding or older 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. It’s important to know whether low levels of vitamin D increase the risk of more severe COVID-19 symptoms in people of African, African-Caribbean and south Asian background.

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 supplement.

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 rules to keep them and others safe. They don’t necessarily need to understand everything about coronavirus to make changes, particularly about handwashing, not going out 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 rules’ 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 staying at home when they see or speak to them.

People with dementia often rely on set routines; if you know what time they are most active or normally leave the house then focus your efforts around these times. Consider putting up notes or posters to remind the person not to go out.

People with dementia can lack confidence. They may feel that the reason they have to follow these rules is because they aren’t as capable as they once were. Although keeping someone safe can be stressful, try to communicate in a way where they don’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.

How can I stop someone with dementia from leaving our house?

This will require some trial and error to see what works. It may help to develop a routine of activities that you can both enjoy in the house and garden.

When you can leave the house for exercise, make this time as stimulating as possible. Talk through what you see, hear and smell when you’re out.

If the person stills wants to leave the house at other times, try to find out why – this may be due to something you’re unaware of. You might be able to find other ways of giving them what they need. For example, if they say they need fresh air, consider sitting outside for lunch or open a window if it’s safe to do so.

Explain why they shouldn’t leave the house in a variety of ways. This could be gently reinforced by friends and neighbours. Communicate in a way so that they don’t feel ‘told off’ and explain that this is something we’re all doing together.

If there’s a time that they often want to leave the house, try and distract them round about then. For example, if they normally go shopping around 10am, start activities just before then.

If the person still insists on going out, encourage handwashing before and after leaving the house. If you are able, go with them – you may be able to guide them home quicker or ensure they keep a safe distance (at least two metres or three steps) from others.

You may also wish to look into the Herbert Protocol or helpcards. These could help if the person gets lost or if they are stopped by police and can’t say why they are outside. If they refuse to stay in the house and are at serious risk – for example, if they are in a group that should be shielding, discuss your concerns with their local authority. For more details, see our information on Walking about.

Remember that these approaches may not work for everyone and you can only support them to follow the rules. As much as you want to keep everyone safe, you can only do your best.

Read more about supporting a person with dementia at home during coronavirus.

Can I still make a Lasting power of attorney during lockdown?

Yes! There are many things that we can’t do during lockdown but this is something you can do. You may find it reassuring to get a Lasting power of attorney (LPA) organised so that you know it’s sorted. Family members and others may also have more time during the lockdown period to support you with the process.

Making an LPA involves getting signatures and you may find this more difficult because of social distancing restrictions.

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?

Many supermarkets are offering special arrangements for older and vulnerable people. This includes priority booking for food delivery slots – although these are very busy. Check individual supermarkets’ websites or ask someone else to help you or do this for you. 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. You could call your local supermarket to find out more about this.

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.

Other useful organisations and information

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

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. 

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 

https://111.nhs.uk/covid-19 (England) 

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. 

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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