Coronavirus: Frequently asked questions and useful organisations
Here are answers to some commonly-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.
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.
I am 58 and I am the main carer for my partner who has Alzheimer’s and is aged 76. He got the vaccine last week but I’ve heard nothing about when I’ll get mine. Do I just wait?
In general, it is best to wait until your local GP or vaccination centre contacts you rather than you getting in touch first. According to government guidance, anyone who is the main carer of a person with dementia will be included in group 6, which comes after people aged 65 to 70 years. So, as things currently stand, it’s unlikely that you will be offered the vaccine before mid-to-late February.
In the meantime, make sure that you are registered with your GP practice as a carer. Otherwise it’s possible that when your turn comes you may be missed. However, do please be patient when phoning the GP surgery as they are likely to be very busy at the moment.
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.
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.
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.
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.
We have detailed information about Lasting powers of attorney.
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.
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.
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. Take a look at our own suggestions for activities.
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.
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.
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.
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.
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.
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’.
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.
Provides advice and resources about life story work
Charity that helps people with dementia create a unique and personal music playlist.
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.
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]
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 health information and advice on coronavirus. Covers symptoms, hygiene, social distancing and self-isolation.
Advice from Public Health England to support your mental health while staying at home.
Advice on creating an emergency plan for family carers.
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.
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 website on coronavirus (COVID-19) and what people need to do.
Information on benefits and coronavirus.