The ongoing challenges for people with dementia during coronavirus

August 20, 2020

Updated 5th November 2020.

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, particularly as the country now faces tighter restrictions.

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 be worried about when face-to-face services and other sources of support will resume, storing up a huge amount of emotional distress for them.

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 restrictions. 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.

Routine

The new restrictions across the UK will be unsettling for many families and feel like a loss in routine, but there are still things you can do to keep yourself stimulated and secure.

If possible, set up different areas around your home so that you can move from activity to activity; watch favourite films and musicals in the living room; listen to the radio in the kitchen; do jigsaw puzzles at the table; take walks around the garden, if you can.

Ask friends and relatives to bring you films, puzzles, music, games – anything you think the person with dementia might like to do. They can leave these outside the front door for you to maintain social distancing guidelines.

Go outside, ideally into your garden to limit contact with other people. Finding things to do outside or simply sitting in whatever sunshine we get will help. Fresh air and green space will help lift the spirits and also provide some stimulation. If you can, plant up a few pots with seeds or flowers that can be placed near the windows. If you have a garden shed, there may be some projects in there you can try – like making a bird feeder.

However if your relative with dementia needs a change in scenery after long periods around the house, you could go to a local park. You are best placed to know what would be most suitable for your loved one with dementia, whilst taking the social distancing guidance into account.

Sundowning

The current restrictions throughout the UK will be challenging for families, particularly as winter may reduce the time families can spend outdoors and the nights are drawing in earlier. Issues around sundowning – a term used to describe the changes in behaviour in the evening – may be even more pronounced at this time. Establishing a routine of enjoyable activities for you and the person with dementia can help to offset this. Closing the curtains and turning lights on earlier can help with the transition into night-time.

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 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. Guidance has now been released to protect people in that category. If you are in this group, it is highly recommended to stay at home, unless exercising or if you need to go to medical appointments.

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.

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.

It is advisable to book in for a flu jab to protect you and your family members. In England, anyone who needs to shield and/or is over 50 is eligible for a free flu jab. Scotland, Wales and Northern Ireland are also running their own flu campaigns. People who are not eligible for a free flu jab can pay for one at pharmacies and supermarkets. GP surgeries and pharmacies offering the flu jabs will ensure that social distancing is maintained and you can always contact them to see what measures they have put in place to help you feel more secure.

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.

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