The Brain Charity

As the media has become dominated by coronavirus, and we have been told to isolate and avoid contact over the last 12 months, it has been difficult not to become anxious. This is particularly true for those of us with friends or family in high risk groups, such as those living with dementia. As dementia is largely a disease of later life, and high-risk people over 70 have been told to isolate at home, we ought to bear in mind the effects of the pandemic on those of us living with dementia and those of us providing care.

Watching for symptoms of infection in people with dementia

When a person has dementia, it can be difficult for them to express themselves verbally. Dementia can make it difficult for a person to articulate discomfort, or even to distinguish a change between feeling well and unwell. If you suspect that the person you’re caring for has contracted COVID-19, you should look for the following symptoms provided as guidelines by the NHS:

• Fever
• Dry cough
• Shortness of breath
• Loss of, or change in, sense of smell or taste

If you spot more drastic changes in demeanour and behaviour in a person with dementia, it is important to advocate for them quickly. Explain to medical professionals what the person’s recent normal behaviour is, and how it has changed. This includes changes to mood, and cognitive functioning. It is useful have notes on history of medical conditions (frequent urinary tract infections, for example) and then describe any suspicious changes.

Signs of discomfort to be aware of

When people living with dementia get infections, signs of discomfort to look out for include:

• Not wanting to be touched
• Difficulty breathing
• Increased confusion
• Making unusual sounds – calling or crying
• Tense facial expressions and grimaces
• Unusual changes in body language – violent actions, pulling away, tight fists

The person may also seem harder to be consoled, calmed or distracted. Newly developed challenging behaviours that can be a sign of pain include:

• Cursing
• Combativeness
• Apathy and withdrawal from activities and interactions
• Becoming more high maintenance, seemingly more difficult to please
• Wandering
• Restlessness
• Repeating behaviours or words

If you are in doubt as to how the person you’re caring for is feeling, you might also wish to try a visual aid, such as a face scale. This can be used to help you identify how someone is feeling.

Tips for explaining the lockdown to someone with dementia

Dementia can cause confusion and loneliness at the best of times, and such drastic shifts in routine may exacerbate these feelings. If possible, try to keep a structure to your day, with stable meal times and food which the person enjoys.

It is undoubtedly hard to explain to the person you are with, why they can’t go outside or to the day care centre. While each person will experience this lockdown differently, it is distressing for everyone to be stuck indoors if they would like to go outside. Here are some tips on approaching the lockdown guidelines to explain them to the person living with dementia:

• Try to remain calm and pleasant, even if you have repeated the same information multiple times.
• The way that the information is delivered often has a bearing on how it is received. For many people with dementia, the words themselves are not understandable, so the way you say it will make a difference.
• If appropriate, try to use physical touch when explaining. Place a hand on their arm, or around their waist.
• Check to see if they are listening. If they are not able to process the information right at this moment, try again in a little while.
• Make sure there is no background noise and as few distractions as possible when you are trying to get their attention.
• Try to use body language to explain things. If the person is having trouble understanding words, you can point, signal, or demonstrate.

Here are some questions and tips collated through interviews with our service users, and by Linda Lawson of the Alzheimer’s Society:

“My husband doesn’t understand the lockdown, and when I explain to him, he doesn’t remember. What can I do?”

• Order newspapers to read with breakfast everyday so that he is aware of the current situation daily.
• Suggest to the person that ‘today we’ll have a stay at home day’ and plan activities accordingly. This could be repeated each day of isolation.

“My mum wants to get out and about as usual, and when she looks out of the window, she sees young mums with children. How can I help her to remember that we can’t go outside?”

• Explain by saying children have to go out for exercise at least once a day so they don’t get ill, but they can only be out for half an hour max and only once. We have even sat together to see if we can spot anyone twice!
• Put a sign on the front door stating ‘Danger, do not go out’ and add some information about coronavirus.
• Take photos of shops, pubs and cafes that are closed and are the usual places a person may visit to show them what the situation is.
• If the situation is distressing, try to distract with an ’important job’ which needs to be done – for example – drying up, weeding, etc.

“I’m worried that social isolation will cause mum’s condition to worsen, as she isn’t in contact with people on a daily basis. What can I do?”

• Send cards and letters regularly to relatives in care homes explaining why you aren’t visiting. Include past memories about people or situations.
• Organise regular FaceTime, Zoom, or Microsoft Teams video calls or phone calls with friends and family.
• Print out photos of loved ones and place them around the house as prompts to start conversation with.
• Try to engage the person with activities if possible. Here are some suggestions compiled by the Baring Foundation.
• Join in The Brain Charity’s virtual activities, which will appear in our online calendar, and sign up to our online Music Makes Us! programme.

The Brain Charity can help

Please be kind to yourself if you are struggling with these highly unusual circumstances! It can be tough to cope with the effects of dementia at the best of times, and extra stress does not help.

To find out more about our Music Makes Us! workshops for people with living with dementia, email: kym@thebraincharity.org.uk or sign up here. You can also click here to find contact details for all The Brain Charity’s services and departments.