Kym Ward, Dementia Project Coordinator at The Brain Charity, offers insight into how to support those living with dementia during times of uncertainty and isolation
With the media dominated by COVID-19 over the last two years, and populations across the world told to isolate and avoid contact, it has been difficult not to feel anxious.
Throughout, this has been 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, we ought to bear in mind the effects of the pandemic on those of us living with dementia and those of us providing care.
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 spot 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 to have notes on their history of medical conditions (frequent urinary tract infections, for example) and then describe any suspicious changes.
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:
• 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 a face scale.
Tips for explaining isolation and lockdowns to someone with dementia
Dementia can cause confusion and loneliness at the best of times, and drastic shifts in routine caused by sudden isolation, or reduced care home visitations, may exacerbate these feelings.
If someone living with dementia is required to isolate, if possible, try to keep a structure to your day, with stable mealtimes 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 a day care centre. While each person will experience self-isolating differently, it is distressing for everyone to be stuck indoors if they would like to go outside.
Try to remain calm and pleasant, even if you have repeated the same information multiple times. The way that the information is delivered also 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. You can also 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 tips collated through interviews with The Brain Charity’s service users, and with Linda Lawson of the Alzheimer’s Society:
“My husband doesn’t understand COVID-19, 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.
If someone with dementia is isolating, 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 when she’s isolating?”
Put a sign on the front door stating, ‘danger, do not go out,’ and add some information about COVID-19.
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. You can also 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 a conversation. Furthermore, try to engage the person with activities if possible. You could even sign up for The Brain Charity’s online Music Makes Us! Programme.
We 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.
Find out more about The Brain Charity’s Music Makes Us! Programme here.