The ongoing challenges for people with dementia during coronavirus

August 20, 2020

Updated 1st April 2021.

The threat of coronavirus remains real and it seems unlikely that life will fully return to normal any time soon. Carers and people with dementia may still be feeling anxious and frightened, even though restrictions are gradually easing.

Families may also be in a position where a lot has changed; their relative may have deteriorated after long periods of isolation and carers could have stored up huge amounts of emotional distress in the absence of support services. This is in addition to guilt at not seeing their loved ones with dementia due to a year of restrictions.

We have put together these suggestions to help you cope with these uncertain times.

Follow government guidance on lockdown restrictions

Mother and daughter with facemasks

It is important to continue to follow government advice on helping to avoid the spread of coronavirus. Find a credible source of information such as GOV.UK, or the NHS website, so that you can keep up to date with information about restrictions in your area. 

There is guidance on Coronavirus (Covid-19) from Scotland, Wales, Northern Ireland and England. To find out more, please visit the relevant government websites as the information and guidance changes regularly: 

For Scotland, visit https://www.gov.scot/coronavirus-covid-19/ 

For Wales, visit https://gov.wales/coronavirus 

For Northern Ireland, visit https://www.nidirect.gov.uk/campaigns/coronavirus-covid-19 

For England, visit https://www.gov.uk/coronavirus 

Supporting from a distance

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.

Reuniting

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.

Sundowning

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.

Access to respite

As face to face day centres and support groups continue to be closed, it is important 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.

Keep in touch

Draw on support you might have through your friends, family and other networks. Arrange for regular phone calls, or outdoor meet-ups if they live nearby, and 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 how to stay in touch here.

You can connect with other people affected by dementia through the online community, Talking Point. Carers can also contact other carers through the Carers UK Forum. Services like the Volunteer Responders can support you with a regular friendly phone call and to help provide transport to and from medical appointments.

Support bubble

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.

Clinically extremely vulnerable people

There are many people with dementia who are in the extremely vulnerable category for the above reasons. Different rules apply to people belonging to this group depending on where they are in the UK. Most important of all is to do things which make you and your wider family safe and comfortable, whilst checking the rules which apply to your area.

You will be able to use an online service which will help you request priority access to supermarket delivery slots and inform your council that you need help.

And please remember…

…that advice to stay two metres (three steps) social distance from others still remains. Whilst the vaccine rollout is progressing rapidly, there are still new variants circulating and there is a chance you might still get or spread coronavirus even if you have had the vaccine.

Many people with dementia are over 70 and so are more likely to have long-term health conditions which could mean they are more susceptible to contracting coronavirus. Supporting them to maintain social distancing guidelines as much as they can, as well as relying on support networks if you are unable to leave the home with them, is essential.

As a customer, in all parts of the UK, 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 one due to their reduced cognitive ability and challenges around communication. Always do what is best for you and loved one with dementia.

If you or someone you live with has coronavirus symptoms, the advice given by the government is to stay at home and self-isolate to prevent the spread to others. 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.

Get help and support

While it is important to be aware of coronavirus, it is also important not to forget about other health conditions you might have. Whilst service provision varies across the country, it is still important to contact your GP, or emergency numbers, if you are concerned about your health or the health and memory of your loved one. Other needs like dental care should also be considered at this time as well.

If you are struggling with your mental health or have experienced grief or bereavement due to the coronavirus pandemic, allow yourself space to grieve and seek support from your GP if required.

You can also speak to an Admiral Nurse on Dementia UK’s Helpline by contacting 0800 888 6678 or helpline@dementiauk.org.

Admiral Nurse Dementia Helpline

Call our Dementia Helpline for free on 0800 888 6678 or send an email to helpline@dementiauk.org

Find out more

Coronavirus information and advice

Head to this page to read up on the things you can do to look after yourself, and the person with dementia, during this time.

Find out more