Sep 21, 2020

Banning contact with loved ones is like a prison sentence

We need to find a new way to manage the risks of COVID-19 for people living with dementia without robbing them of human contact, says renowned dementia specialist, Teepa Snow.

Depriving people of contact with loved ones is as good as a prison sentence, she told HelloCare when we caught up this week. With families unable to assist in homes under lockdown, staff are often unable to keep up with the needs of residents, and care is being missed, she believes.

It’s time to bring families back into aged care facilities, she says, and she is working with an organisation called Caregivers for Compromise to develop protocols to enable homes in lockdown to reopen safely.

Keeping in touch using video links won’t always work

This is the second time I have interviewed Ms Snow, and it’s the second time our conversation has veered into areas I hadn’t expected. Ms Snow’s depth and breadth of experience working with dementia carers gives her a unique perspective that is illuminating.

I began our conversation with Ms Snow by asking her a question that came to HelloCare through our Aged Care Workers Support Group: how can we help people living with dementia remain engaged during video calls?

It’s impossible to make blanket assumptions about caring for people living with dementia during COVID-19 because their needs vary to such a great degree, just as they do for all of us, Ms Snow said.

Some people can “be without human connection” for quite some time, using their visual and auditory skills to engage using video connections.

On the other hand, many people living with dementia will be missing being present with somebody during lockdown. 

A regular way we spend time with people is sitting at a table with them and having a cup of tea or coffee, and Ms Snow says recreating this scene can be a useful way to engage during video calls.

For these situations, carers can set up the situation so that it looks as though the person on the end of the line is sitting at the table with them, and they can create the impression both sides of the conversation are involved in a joint activity such as having a cup of tea or coffee. 

To create the effect, call while you are seated at a table and have the table visible in the lower part of the screen. Turn your body to face the person, use facial expressions, and hold familiar objects up to the person that you can talk about, for example the mug. 

Teepa Snow, image supplied.

The idea is to engage the person in a situation that is familiar and comfortable to them that they can feel engaged in.

Set up the screen so that the person can’t see themselves because that can be distracting, Ms Snow suggests.

Try to have a plain background as busy backgrounds can be distracting. As we spoke via video conference, Ms Snow drew a plain curtain around her seat which dramatically simplified the scene around her. “Now you can look at me and really focus on me,” she said. 

As you talk, you can show the person objects they might be interested in, and they can base their conversations around those objects.

“We have to treat it as though we’re in the same space, but I’ve got to really tune in to what they are noticing what they are not noticing,” she said.

Ms Snow described these kinds of conversations as an “art” and something you have to learn to do and work at.  It takes quite a lot of skill and practice, she says.

Communicating online for people living with dementia:
– Have a plain visual background
– Hide self view so the person can’t see themselves
– Focus on the person
– Use facial expressions when you communicate
– Talk about objects they can see
– Ensure there is a team of helpers on site with the person
– Ensure the helpers are people the person likes and can get on with
– Set up the screen so they can see the table in front of you, use the table for objects/activities
– Engage in activities, for example crosswords, using tiles to make words from

Video calls have limitations

But Ms Snow said families also have to accept that video calls with loved ones in residential care won’t always work. The person might get distracted or they may simply not engage over video calls.

People living with dementia “aren’t particularly skilful at impulse control. They don’t have the ability to sequence or know what comes next or when they’re done, and it’s time to move on and initiate a new task. 

“They have trouble judging whether or not it’s time to get up and go somewhere because they’ve been sitting a long time or if it’s okay to just stay here a bit longer.”

She said in the long term, care staff won’t be able to provide everything that person needs. “We can all make do in an emergency, but the emergency is over,” she said.

Social isolation like a prison sentence

Ms Snow would like to see the care sector starting to make plans that accept “that there’s a new risk in the room”: COVID-19. 

Isolation is not a long-term solution, she said. “The vast majority of us need human connection to live. It’s part of what we need to stay alive.”

People living with dementia have already lost so much, to take away contact with loved ones is  tantamount to a prison sentence, when the only crime committed is having dementia, she said.

Accepting a level of risk

“We’ve got to come up with some new ways of coping that have a longer shelf life because maintaining this level of vigilance and isolation and separateness, it’s not humanly sustainable,” Ms Snow said.

“We [have to] set new levels of risk acceptance,” Ms Snow said. Risk is a part of all our lives, and COVID-19 should be no different. Carers, families and people living with dementia need to come to an agreement about the levels of risk they are happy to accept, she said. 

“There’s no way to live without risk.”

“The risk of having no people in your life is not minimal. It’s quite high. The findings of isolation, enforced separation, that’s what we did with prisoners of war, in concentration camps. It’s not going to work,” she said.

“We’re making this virus, in some ways, more dangerous than it needs to be because we aren’t being smart.” 

“We have to build a new system.”

Becoming more knowledgeable about COVID-19

“We’re going to have to quit being scared of COVID-19 and start being really knowledgeable about it,” says Ms Snow.

Ms Snow said by limiting exposure in the outside world, wearing protective clothing and practicing really good hygiene, contact with those living with dementia in residential care should be possible.

When residents have no symptoms and to the best of our knowledge have had no exposure to a person with COVID-19, Ms Snow recommends:

  • Wearing a protective layer of clothing that can be as simple as a man’s shirt worn backwards. The shirt can be washed after use.
  • Wear cloth masks that can be washed if there are not enough disposable masks.
  • Limit exposure both to the outside world and to the person where we can.
  • Question if your face needs to be covered all the time.
  • Remove sofas, only have single chairs.
  • Place tables in the middle of the room to break up open spaces.

We can balance these safety measures with the need for human contact and for people living with dementia to feel safe, Ms Snow said.

Soap, water, alcohol

Soap, water, heat and alcohol are the “enemies” of COVID-19, Ms Snow says.

Communities need to take it upon themselves to learn how to properly sanitise, and to teach each other. They need to learn when they need to wash their hands, how to avoid droplets being dispersed in the air or onto surfaces.

Hygiene practices need to become a new, automatic pattern of behaviour.

In a home where there are no cases, we have to think about when to wear personal protective equipment, and be alert to the practicalities.

If someone falls, you’re not going to stop to put on PPE before you go to them, for example, Ms Snow suggested. We need to think about these types of situations and have a plan. It might not always be possible to be wearing PPE, but hands and clothing can always be washed, she said.

Allow families back in

COVID-19 is often coming into aged care facilities on staff, so there is really no reason to lock family out, Ms Snow said.

“I agree that we need to use caution… but let’s have limitations where we need the limitations,” she said.

She said families are often having to hire a carer during lockdown because there are simply not enough staff available to provide the care the residents need.

Caregivers for Compromise

Ms Snow, along with Caregivers for Compromise, is working hard to develop “safe and reasonable” reopenings of homes that do not have enough support.

“Prolonged physical separation and isolation” is having a negative impact on the health and well-being of residents, they believe.

“There are certain individuals living in communities that need more support than they are getting,” Ms Snow explained. “Their care is inadequate. They’re deteriorating rapidly. We’ve tried all the strategies that have been suggested, window visits, ipads, virtual hugs, and staff are overwhelmed. 

“Often in those communities, staff are reaching their limits because they’re watching the people they care about lose ground and go down and they can’t be more than they are.

“Their colleagues are not showing up for work. Sometimes when there’s a positive case, three-quarters of the staff don’t show up,” Ms Snow said.

“There is no way that one person can care for six individuals living with dementia and not have people waiting for what they need. It’s just not possible.”

Caregivers for Compromise is creating tools to help families and carers do things “wisely and smartly”. 

“We’re doing video training on how to engage people and not create a sense of lockdown,” Ms Snow said.

Dementia units under lockdowns are tantamount to prisons and will eventually have to resort to medication to manage behaviour, and that will lead to an increase in falls, difficulties with eating and swallowing, and weaker residents, Ms Snow said. 

Making it through difficult times

“These are not good times. It’s time to get through this,” she said. 

“Maybe we put the chairs further apart. Maybe you have people sit at a slightly greater distance apart, but you allow them to be with one another. We manage the risk.”

Ms Snow said we have to recognise there is risk and create a new set of protocols. It’s better than “locking everyone out and hoping for the best”. 

Image: TSO Photo, iStock.

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  1. This is such an interesting article and I really applaud thinking ‘outside the box’ as this lady has. Interesting because I also had a little bit of personal experience in a similiar situation. My own dad who experienced quite advanced dementia, I remember him going up to this glass wall, and constantly touching it and talking to it because he could see his reflection (but he thought it was his brother), dad was confused because he couldn’t understand why his brother wasn’t talking back or why he couldn’t physically touch him. So this came to mind as I was reading this article today. My dad never made it to aged care and sadly passed away a couple of weeks ago but lockdown in aged care would certainly have devastated him (and us all). Ang (Health and Aged Assist Qld).

  2. I agree with Teepa’s techniques – very solid ideas.

    I just wish the language of imprisonment and detention could be dropped from all conversations – “Dementia units under lockdowns are tantamount to prisons” – it is inflammatory and unnecessary – no provider wishes to keep residents and loved ones apart. Prison is an intentional separation from society. Covid safety is not!

  3. Be cautious when listening to an American whose country has half the people thinking covid is a hoax. Our CDC listed aerosol transmission as a source of transmission (which it is) for all of 4 days this past week, then it disappeared again, much to the dismay of American aerosol scientists. Washing hands and wearing a certain shirt, with optional masks isn’t going to work. Over 54,000 Americans have died in nursing homes. I agree we need to find ways to get visits going and as safe as possible. And the tips on video visits are excellent. But many other comments in this piece are opinionated, inflammatory, and ignorant. And just plain not helpful.


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