Dementia UK advice for people with dementia and their families, regarding the coronavirus

May 29, 2020
Isolated man looking out of window

We know that this is a worrying time for families looking after someone with dementia. However, there are a few things you can do to look after yourself, and someone with dementia, during this time.

Please remember that you never have to struggle on alone. If you have any concerns about caring for someone with dementia through the coronavirus (COVID-19) pandemic, please call the dementia specialist Admiral Nurses on our Helpline, on 0800 888 6678 or email helpline@dementiauk.org.

The Helpline is open seven days a week, 9am-9pm Monday to Friday, and 9am-5pm on weekends.

Here is the advice from our Admiral Nurses on looking after yourself and a person with dementia throughout this period of time.

The situation around the UK

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

However, there is still consistent general advice that can be followed to reduce the risk of contracting coronavirus in the person with dementia and the wider family.

Self-isolation or quarantine

If you or someone you live with has COVID-19 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.

Social distancing and shielding

Social distancing is defined as staying at home and away from other people as much as is possible. Although there is some relaxation around the ‘stay at home’ message, and the number of people you can be in contact with is gradually increasing, advice to stay two metres (three steps) social distance from others still remains.

This might be difficult for a person with dementia, as they may not understand and follow the guidelines, which can cause others anxiety or distress. This can be especially difficult in shops or out walking, if the person with dementia wants to go up to see or talk to people. Try to pick quiet routes for your walk and go out at quieter times, either early or late.

It may be better to rely on family, friends, neighbours or local volunteers to get shopping for you. The major supermarkets are trying to put more home delivery and Click and Collect slots onto their sites daily so do keep checking this, although we know that these services are very busy and you might not be able to find a slot. Some local shops are also providing deliveries or a collect service. Check local websites such as Next Door, In Your Area, as well as your local council for support groups and volunteer networks that are operating in your area. These groups can help you arrange deliveries and leave them at the front door for you, to maintain social distancing.

Shielding is when a person is at high risk from COVID-19, and who should have received a letter from the NHS. The advice for high risk people in this situation is to not leave the house for any reason. The full list of people who are classified as high or moderate risk is available here NHS guidance. People with dementia are classed as at moderate risk of COVID-19, which means that the person should stay at home as much as possible, and follow social distancing guidance.

Coping without support groups or day centres

As face to face day centres and support groups have 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.

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.

Missing friends and family

If you have other people you usually see or who visit you, make a point of keeping in contact. Set up a regular phone call or video conversation with them, so that you are staying connected to the world outside and still checking in on the people you care about.

Care homes

Every day there are stories in the media about the availability of testing equipment for staff and residents, and the supply of personal protective equipment (PPE) in care homes. For many carers and family members, this is still a worrying time. We are working hard, alongside other charities, to continue to raise the issues of PPE and testing for care home staff with the Government.

If you have a relative with dementia in a care home, there are a few different ways to keep in contact from a distance. Some practical ideas are:

  • Arrange frequent phone calls. Explain the situation using simple and short sentences that can be repeated on a frequent basis, for example, that there is a virus going around and for the safety of people in the home, people cannot visit, temporarily
  • Posting letters to the person and asking staff to read them out
  • Using technology to keep in contact with the person. Many homes use Facetime or similar platforms to communicate; so check with the home what they use. Remember that your loved one may need some help by care staff to use the technology
  • If the person in the care homes likes flowers, you could send a small bouquet and ask the care teams to help the person arrange them as an activity
  • Sending photographs with notes on (listing the people in the photo) so your loved one knows who they are. The staff at the care home can then start conversations with the person about the photos

Different care homes will have different policies in place. Speak with them to see if they can offer any alternatives to stay in touch. Care homes are there to support your loved one, as well as the wider family. You should discuss any issues you are having in staying in contact with the person with a member of the team.

If you care for someone with dementia that you do not live with

If you have a relative with dementia who lives with someone else, try and think about anything you can do to make this period of time easier for them. If possible, become their proxy so that you can speak to their GP on their behalf. You will need to register with the person’s GP to do this. This is clearly a busy time for GP surgeries, so you might need to wait to speak to them or do this online.

Can you take, or help arrange, deliveries of groceries, or games and films? If they are not on the internet, can you keep up to date with the latest advice from the Government, so that you can share it with them, or help them to follow it? Can you set them up on Skype or Facetime etc., so that you can check in with them every day? Keeping in regular contact not only reassures people and gives them a connection to the outside world, but it gives them something to look forward to and a structure for their day.

These are very unusual circumstances and the best way through them is for us to look out for each other as much as we can. If you have any questions about supporting someone with dementia during the coronavirus outbreak, please call the Admiral Nurse Dementia Helpline on 0800 888 6678 or email helpline@dementiauk.org.