COVID-19 has been a difficult period for all of us, but for those living with dementia and their loved ones, the pandemic has thrown up unique and unprecedented challenges.
At this week’s webinar titled ‘Caring for people with dementia during COVID-19 restrictions’, hosted by the Older Persons Advocacy Network, leading experts shared their advice for this difficult time.
What’s it like living with dementia during COVID-19?
Dementia Australia CEO, Maree McCabe, said those living with dementia are among the most vulnerable to COVID-19. The changes required to keep aged care residents safe during COVID-19 have left some residents feeling “afraid”, she says.
She explained what it might be like for those living with dementia in residential aged care.
Residents may be used to being visited every day, helped with their meals by a loved one, being free to move around the home, and enjoying group activities. But COVID-19 has meant that they are suddenly told to stay in their room. The people around them might be wearing masks, they may be people they don’t recognise, and they might come in and not necessarily say who they are or explain what they are doing.
“You’re loved one doesn’t come in any more. They don’t help you with your lunch. Feeding becomes a real issue and sometimes you actually don’t get to eat. You keep asking to go out for a walk but are told you have to stay in your room, and you get increasingly scared and confused about what’s going on. And you get angry because it feels like no one is listening or talking to you,” Ms McCabe said.
Ramping up the focus on engagement, stimulus and communication is really important at this time, she said.
What changes can carers make to the way they deliver care?
A consultant for Dementia Australia’ Centre for Dementia Learning, Wendy Henderson, said how we communicate with those living with dementia is more important than ever.
For those living with dementia, it may be difficult to read facial expressions, especially when others are wearing face masks. Carers should take the time to ensure the person understands what they are trying to communicate to them.
Similarly, those living with dementia may not be able to express how they feel and make themselves understood. They may not understand what is expected of them, or be able to process information about the virus. They may not understand the risks, and why they are being left in their room.
Use appropriate language. Words such as ‘pandemic’ and ‘crisis’ may trigger past memories, and cause those living with dementia to become upset.
Those living with dementia may not be able to read instructions about hand washing, so facilities should ensure signage includes words and pictures.
Speaking to a loved one through a glass door or window may not be ideal for all, it may be difficult to hear.
Slow down and explain
Carers should be mindful of their tone of voice and body language. Staff who appear stressed, rushed or fearful may cause a person living with dementia to become agitated or anxious.
Ms Henderson said the ‘key words’ are ‘slow down’ and ‘explain’.
Ms McCabe said, “The carers tone of voice can be very reassuring, but if they are rushed or stressed then it will be less reassuring. That’s where they may encounter some difficulties. The person living with dementia will be looking for cues from the carer as to the things they might do. For example, use your hands to show the direction you might want them to move in.
“It’s really important to be calm, use short simple sentences and allow time for the person to understand.
“Try to avoid background noise, that level of stimulus can be very difficult for a person living with dementia,” Ms McCabe suggested.
Feelings of isolation amplified
Ms McCabe said for those living with dementia, any feelings of isolation they experience in their ‘normal’ lives may be “amplified” during COVID-19.
“Ramping up engagement and communication at this time of restricted physical contact is really important for us all but particularly for people living with dementia,” she said.
“Balancing safety with social interaction is… tricky during the pandemic. But we really do need to maintain the physical and mental health of people living with dementia.”
Evidence dementia symptoms have progressed during lockdown
Ms McCabe said new research has shown there is already evidence of an increase in the progression of dementia symptoms during the lockdown.
“That lack of interaction, loss of routine, lack of stimulus had had a deleterious impact on people living with dementia, so their cognitive function has declined more rapidly.
“These are losses they won’t regain,” she said.
Maintain link to family
Dr Melanie Wroth, Senior Staff Specialist in Geriatric Medicine at Royal Prince Alfred Hospital, and Chief Clinical Advisor, Aged Care Quality and Safety Commission, said it was vitally important for family to remain involved with the care of their loved one living with dementia through the current crisis.
“Family, friends and loved ones are really important for all of us, but for people living with dementia these people have a long knowledge of and deep emotional attachment to the person, and long-held trust,” she explained.
Family and friends are often in the best position to deliver important messages in a way that’s best received, she said.
“During COVID-19, where normal processes and normal staffing can be quite disrupted, it very easily leads to heightened anxiety and fear among people living with dementia. Family are in the best position to help the person with what is happening and it may need to be on a frequent basis because people forget they’ve been reassured and they need to continually be reassured,” she said.
“Hearing the message from someone you trust is much more reassuring than hearing the message from a stranger.”
Protections must sit alongside human rights
OPAN’s CEO Craig Gear reminded listeners of the lessons of the first wave, when those in residential aged care were prevented from being able to connect with loved ones. He said the “protections” put in place for those living with dementia sometimes “took precedence over people’s rights”.
“It’s tricky, it’s really hard, but the two things have to sit together,” he said.
Restrictions on movement
“Moving around is something they’ve always done, and they’re going to want to continue to do it,” said Ms Henderson. It’s important to maintain the regular routine as much as possible, she said.
Carers can encourage regular opportunities to walk outside and exercise, facilitate gentle exercise and maintain access to natural light.
Other activities to encourage are accessing online music, encouraging singing and maintaining social support through smaller group activities with social distancing, for example in larger spaces or outside. Introduce new ways of connecting with loved ones, for example through video calls.
“There is no easy solution,” Ms Henderson said. “Not all of these ideas will work every time. The more you know know the person, the more we know their stage and the form of dementia, and being flexible in our approach will help in these situations.”
Dr Wroth gave the example of facilities where residents are given a hand massage with hand sanitizer if they are moving around the facility. That provides a “degree of safety,” she said.
Record keeping and care plans take on a new significance
Mr Gear said record keeping and care plans have a new significance during the COVID-19 crisis.
“We are seeing the situation in Victoria where staff are having to come in from other facilities because of staff being isolated. Really good documentation will mean that person coming in knows what works for that person.”
The plans are important to the rights of the person to be respected.
“If there’s a new carer caring for somebody who needs feeding or who needs minding to eat or drink, or only likes to drink a specific thing, then those things need to be carefully handed over and overseen.”
Monitoring is also “critically important” at this time. “When the normal service staff and systems are disrupted, things like food and water can slip under the radar.
A ‘life story poster’
Ms Henderson said a ‘life story poster’ can be useful to help staff engage with residents living with dementia.
The poster can be as simple as a sheet of paper attached to the wall with their preferred name, and around five pictures demonstrating what is important to that person.
“Given we have so many agency and casual staff backfilling at the moment, a quick glance gives them a clue about something that they can immediately engage with for that person while they’re undertaking their personal care.
“It can help them immediately initiate dialogue around the story and some laughter. If we know something about the person’s background, for example, if they were a doctor, they might not have negative reactions to PPE.”
Chemical restraint remains a last resort
Mr Gear said use of chemical restraint remains a last resort. “You have to try other behaviour mechanisms,” he said.
Ms McCabe said if carers notice a change in a person’s behaviour, if they notice they’re becoming distressed, “you need to find out why”.
“Is it pain? Is it because there’s something in the environment that’s causing them distress? Getting to the source of that is really important,” she said.
“If it’s an acute onset, so it happens rapidly, it might be delirium. Delirium is a medical and psychiatrist emergency and it can be a result of dehydration or an infection. But medication is a last resort,” she said.
Put yourself in the person’s shoes
The webinar heard the story of a resident, and the person-centered care he received.
“Kevin*, a resident in a rural aged care facility, would become very frustrated because he was locked inside. He could see out the window, but he was locked indoors because some of his carers thought it was safer for a person living with dementia.
“Eventually someone said, ‘Let him out and just watch. He can’t go far.’
“So they did. Kevin walked out to the garden, through a small gate, and over to a wire fence.
“After standing there and looking at the cows for a while he turned around and walked calmly back inside. Kevin was a farmer all his life and he wanted to check on the cows. That walk was a meaningful activity for him and something he was still able to do. The open door was better than a dose of medicine.”
Mr Gear said the story shows the importance of thinking outside the box when you are caring for someone who is living with dementia. Try to put yourself in their shoes, he said. “Think about what would be important to that person. But you’ve got to get to know them intimately – and that’s person centered care.” These words of advice are particularly pertinent during the COVID-19 crisis.
If you are concerned about your loved one during COVID-19 you can call OPAN on 1800 700 600.
* Name has been changed.
Visit the OPAN website to watch a recording of the webinar.