COVID-19 and Dementia — What Now?

The COVID-19 pandemic led to worldwide fear as governments, health authorities and individual citizens prepared for the unknown. Even in the earliest days, it became apparent that seniors were not only in the highest risk group when it came to contracting COVID-19, they were also more susceptible to the worst outcomes. For seniors living with dementia, the risk of transmission and poor outcomes was even higher due to a variety of factors, including potential challenges around understanding and remembering to adhere to public health measures, and limited ability in recognizing and expressing early signs and symptoms of COVID-19.

While increased safety measures throughout the pandemic helped to provide physical protection from the virus, for many — including seniors living with dementia — those measures have also come with a cost to cognitive and emotional well-being.

One of the best approaches for alleviating feelings of anxiousness and unease is the creation of routines.

– Heather Palmer & Emma Walsh

The impact of lockdown measures: Jan and Doreen’s story

The dementia journey is unique to each individual, but many who live with it have described increased difficulty in understanding and adapting to change, which in turn can lead to feelings of anxiousness and unease.

One of the best approaches for alleviating these feelings is the creation of routines. In fact, many people with dementia, as well as their caregivers, maintain that well-established routines have contributed greatly to their sense of well-being. But, as COVID-19 lockdown measures were put into place, some of these crucial routines were temporarily paused.

Jan, whose mother, Doreen, lives with dementia in a retirement home, says she will never forget when she had to explain COVID-19 lockdown measures to her mom.

“She was heartbroken,” Jan says. “Mom had worked hard to build routines that helped her maintain her independence. She used to walk in the hallways at least once a day, chatting with people as she went. When the building was locked down, she was discouraged from doing that. She started to feel like she had nothing to look forward to anymore. And at the same time, she slowly lost the ability to walk without support.”

Along with other residents in her building, Doreen was isolated in her suite for many days at a time. When the dining room closed and meals were delivered to her suite, the care team found Doreen was eating less, to the point of significant concern.

“In the dining room, Mom would follow the cues from others and eat very well, with only occasional prompting required,” Jan says. “Alone in her suite, she did not receive the cueing she required. She lacked internal motivation and initiative to eat and seemed to forget what to do when the meals were delivered.”

On top of this, Doreen couldn’t understand why her daughter was not visiting. Though both Jan and the care team regularly explained that visitation restrictions had been put in place to prevent the spread of COVID-19, Doreen was sad, lonely and often felt as though Jan had abandoned her.

“Previously, I would visit Mom many times a week. When that was no longer possible, I tried calling every day but Mom doesn’t always answer the phone. It was really challenging to stay connected.”

Finding Silver Linings

Jan and Doreen were not alone in their experience. For people living with dementia, the many lifestyle changes brought about by COVID-19 — including disruption to daily routines and decreased contact with family — were hard to adapt to.

But there were other changes that proved to be beneficial. And for Jan and Doreen, technology was one of them.

“The staff at Mom’s home could see that she was struggling,” Jan explains. “So they set up a video call with another resident during meals so she didn’t feel like she was eating alone. They also arranged regular video calls with me so I could check in on her.”

Indeed, many people living with dementia have said they’re now much more comfortable with technology, enjoying the ability to make purchases online, listen to concerts and explore galleries. Further, some have commented that they feel even more connected to family and friends, especially those who live far away where irregular phone calls were the pre-COVID norm.

Additionally, the pandemic offered a break from social pressures. It brought the opportunity to embrace the quiet and calm and spend time reflecting on what activities and other aspects of life bring joy.

“With a little support at the beginning, Mom got back into her knitting,” Jan says. “To date, she has knitted 25 scarves, which she plans to donate. There’s a new level of energy and pride around her knitting that has expanded into her expressing a desire to help with the vegetable garden where she lives.”

Moving Forward

For the majority of us, adjusting to post-COVID re-opening measures will be a welcome and exciting experience. But those living with dementia may not share the same level of enthusiasm. It may take them longer to acclimatize, as they once again forgo the new routines they have come to depend on for the past year and a half.

“Mom is hesitant when I visit now,” says Jan. “As much as I want to hug her after many months of not seeing her in person, she’s just not ready. She is tentative, seemingly unsure as to whether it is allowed or not.”

Thankfully, there are measures we can take to assist our loved ones with dementia through the transition out of the pandemic. Consider the following suggestions:

• Embrace your loved one as they are. Don’t expect them to return to who they were before the pandemic.
• Allow time to adjust. Re-engaging in activities that your loved one has not done for many months can be overwhelming. Allow them to set their own boundaries and timelines for resuming activities.
• Understand that your loved one may have found new interests over the last few months. They may have determined that they don’t enjoy certain social activities, or may have taken up new hobbies.
• Continue to explore virtual options to programs and services. Offer to help your loved one join programs or do their shopping from the comfort of their homes until they are ready to resume in-person activities.
• Be an advocate. Identify gaps in services in your community and bring them to the attention of local government representatives or business owners.

There’s no question that COVID-19 has impacted the entire world. As we move forward, it’s important to take some time to reflect on the negative and positive outcomes of the pandemic, and to think about how we can support our loved ones as we all embark on yet another new normal.