As the media becomes dominated by Coronavirus, and we’re told to isolate and avoid contact, it can be difficult not to become anxious. This is particularly true for those of us with friends or family in high risk groups, such as 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 to express verbally. An individual with full cognitive function might describe themselves as feeling unwell if they have infection. Dementia can make it difficult for a person to articulate discomfort, or even to distinguish a change between feeling well and unwell. If we suspect that the person we’re caring for has contracted Coronavirus, we should look for the following symptoms provided as guidelines by the NHS:
- Dry cough
- Shortness of breath
- Loss of, or change in, sense of smell or taste
In addition, 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) then describe any suspicious changes from the norm to the physician.
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
In the event of any of these changes, can the person be consoled, calmed or distracted? If the behaviour is persistent, this can be a sign of infection. Newly developed challenging behaviours that can be a sign of pain include:
- Apathy and withdrawal from activities and interactions
- Becoming more high maintenance, seemingly more difficult to please
- 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 the face scale. This can be used to help you identify how someone is feeling. If possible, get the person to point or indicate one of the faces on the scale to show which best represents their feeling of pain.
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 collected by speaking to some of our service users, and by Linda Lawson of the Alzheimer’s Society:
"My husband doesn’t understand the lock down, 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.
- I wrote down one sentence at a time about the virus and mum read it back to me with some reactions actually as she read it out loud. The end result of several sentences in a bright colorful pen - I have put by her table mat where she sits for breakfast, lunch and tea so that perhaps she might read it for a few days and I can read back to her every few days.
"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?"
- I explain to mum why this by saying (as true to the fact as I can) children have to go out for exercise at least once a day so they don’t get ill, 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!! (she is sort of a neighbourhood watch at the moment!)
- Put a sign on the front door stating ‘Danger, do not go out’ and even add some information about the virus.
- Take photos of shops, pubs, cafes etc. 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?"
- We have a similar issue with my mum who has very recently gone into respite care. We have been sending cards or letters regularly explaining why we aren’t visiting. I try to include past memories about people or situations she will still remember e.g. “Do you remember how elegant grandma R was with all those amazing hats?” or “I bumped into S who worked with you in the police... he says hi.”
- If possible, organise regular facetimes or phone calls with friends and family members. 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. If you would like some tips, here are some compiled by the Baring Foundation.
- You are also welcome to join in The Brain Charity’s online activities, which will appear in our calendar here as they become available.
If you are unable to leave the house to do food shopping, please contact The Brian Charity call us free on 0800 008 6417 (Monday-Friday: 9am-4.30pm)
The Brain Charity is currently running a food delivery service for vulnerable people and carers in isolation. There are a number of activities which can engage people living with dementia: singing together, dancing (if they are able), gardening, playing simple games together.
Two music-based physiotherapy workouts which are specifically for people with dementia
Coming soon! These can be done from you living room! We are also offering a singing service – we will book a slot on the telephone, and a professional singer will call you to sing along to your favourite songs.
Finally, please be kind to yourself if you are struggling with this highly unusual circumstance. It can be tough to cope with the effects of dementia at the best of times, and extra stress does not help. The Brain Charity can assist you during this time – please reach out to us and we can offer a range of delivery or remote services, including distance social activities and counselling.
- Music-based dementia therapy workshops at The Brain Charity in Liverpool.
- Physiotherapy through dance workshops for people with dementia in Liverpool.
- Speech and Language Therapy through singing workshops for people with dementia in Liverpool.