Caring for people with dementia is even more complicated in the time of coronavirus

Explaining isolation.
Explaining isolation.
Image: Reuters/David Ryder
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One of the most stark changes to our society is the imperative that we stop seeing loved ones over the age of about 65, helping them to preserve an isolation designed to keep them safer from infection.

That’s hard enough when they are well. Alison Gopnik, professor of psychology and affiliate professor of philosophy at the University of California at Berkeley, California, explained to Quartz how interacting with older generations is one of our most unique human characteristics. It’s no wonder the separation is a wrench. But when they’re suffering from age-related conditions like dementia, just explaining the situation can be difficult, let alone adapting to it. For many, even a phone call isn’t straightforward, and the inability to visit in person is a terrifying blow.

Care, at a distance

Libby Brittain founded Quilt, which provides support for people who care for their aging parents and grandparents, after her own mother developed early-onset Alzheimer’s disease. Brittain, who was working at Facebook in New York at the time, moved back across the country to San Francisco to manage her mother’s care at the age of 25. 

Needs vary hugely depending on the way in which a person’s condition manifests. “Dementia can mean so many things. It shows up in people so differently, and then it also changes quite a lot over time,” Brittain said. “So there are two vectors there to consider. One, how does that person’s dementia present and then, where is that person in the progression of their illness?”

Almost half Brittain’s clients live a long distance from the people they care for. And so, while the coronavirus epidemic is changing both carers’ and older people’s experience hugely, there are some lessons to learn from those who have already been caring at a distance.

Perhaps the first thing to do, Brittain advised, is to acknowledge that there are things we cannot change, and caring lengths to which we cannot go—even if we want to.

“It can sometimes be very freeing for someone who is caring for a parent or grandparent, regardless of the illness that they have, to acknowledge the limitations that they are under,” Brittain said. “Those can be financial limitations, those can be logistical limitations. But in this case we are all grappling, in every area of our life, with new limitations that come from this virus, that we didn’t have two weeks ago or three weeks ago and we are all struggling with how to adapt to those.”

Having said that, Brittain offers a useful list of practical things carers can do in this crisis to help relatives through it, while not burning themselves out.

  • Identify who is on your team. “Caregiving is a team sport,” Brittain says, and one that will likely involve a range of professionals and non-professionals. Even if at first it feels like there is no one else, it’s likely there are, or could be. Identify everyone that could potentially lend a hand, from neighbors, or paid carers, to relatives who haven’t previously contributed, and write them down. 
  • Get more comfortable with conflict and discomfort. It would be surprising to get through this time of caring for someone in later life—which is “as stressful and as complex and as interesting as adolescence is”—without conflict, Brittain suggests. And since the pandemic is an extraordinary situation, maybe now is the time to make difficult calls, like asking for help from a sibling who has previously been resistant.
  • Consider the goal of interactions. Is a daily phone call, or an in-person visit, essential to have, or nice to have? The goal here is to acknowledge limitations and make choices based on what’s really necessary to the person’s wellbeing. Many interactions have cons as well as pros: Phone calls, for example, can be both comforting and distressing. Choices in this area are highly personal. “It can be very challenging to make some of these decisions,” Brittain said, but this period of time is calling for us “to make a compromise that works for our families.”
  • Write a script before a call. Calls can escalate, especially when something as complicated as coronavirus is part of the conversation. Writing a script with the points you plan to make and how you will explain them is useful. In one very simple example, using the word “bug” can be less alarming than “virus.” Teepa Snow, who runs Positive Approach to Care, a dementia care training service, creates online videos outlining how this works, including this one focused on the pandemic.

Specific technology solutions

We live in a time when there are more technology-based solutions to caring over distance than ever before. Video calling, which barely existed ten years ago, has become available on a wide range of platforms and is often free, and Brittain notes that visual media can often be easier for people with dementia to use because they can be less confusing than the disembodied voice of a regular phone call.

But the rapid evolution of tech also brings its own problems, including the expense of buying equipment or phone contracts, and the necessity of teaching an older person how to use it.

Brittain says that when it comes to explaining a new technology, it can be useful to deliver documentation in language they can understand. This might be handwritten instructions as well as a verbal explanation, or a set of steps they can print and refer to. If a first attempt to teach a new technology doesn’t work, try again on a different day, or with a slightly different approach.

Lila MacLellan is a Quartz journalist caring for two parents with dementia, at a distance. (Her comprehensive guide for Quartz members on the subject of older care is here.) She bought an Amazon Echo Show, a smart speaker with video, and set it up at the assisted living facility where her parents now live. A range of other devices exist, including from Google and Apple.

“If you’re dealing with any dementia, Echo is the way to go,” MacLellan says.  “As far as I know, it’s the only one that has a drop-in function, so your loved one doesn’t need to know how to answer a call.” Set up takes a little thought, she explained (the device requires an Amazon account and a phone number to receive a one-time text message.) But it would be possible to set up remotely with the help of a carer.

As the main “caller” you can use the Alexa app rather than buying a second Echo Show. “And beyond calls, I often just connect with my mother and let hours go by while she reads and I am taking care of email, folding laundry, making coffee, etc,” MacLellan says. “And we can chat now and then, but I also come and go from the room doing whatever I need to do. On days when she has been unsettled, we’ve done stretching and breathing exercises together.”

There are also low-tech ways to connect. Brittain knew that her mother, who had traveled widely in earlier life, loved postcards. So a while ago she put out a call for people who knew her mother to send cards from wherever they happened to be. These brought pleasure and surprise, but didn’t involve Brittain piling her plate with extra work.

“We put a lot of pressure on ourselves as caregivers to achieve a level of delight or comfort that isn’t always achievable,” Brittain said. But “simple things can sometimes be very profound.”