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Lessons Learned for Dementia Care During COVID-19

Providing care for people living with dementia has posed some extra challenges amid the COVID-19 pandemic. Offering quality care while maintaining the 6-foot social distancing and heavy isolation guidelines can seem nearly impossible at times. It also requires creative solutions.

Since the World Health Organization declared the coronavirus crisis a pandemic in March 2020, tens of millions of people around the world have developed COVID-19. More than a million have lost their lives.

The pandemic has led healthcare professionals to develop a number of new strategies. In our webinar Dementia Care During COVID-19: Lessons Learned So Far, Teepa Snow, MS, OTR/L, FAOTA, discusses some of the important insights gained during the coronavirus disease outbreak. She also offers tips and guidance on how to provide better care for people living with dementia while keeping them safe from the disease.

Preventing the Spread of Disease

COVID-19 is an infectious illness caused by a coronavirus. The main feature of the virus is crown-like spikes on its surface. These spikes make it easier for the virus to attach itself to surfaces, including those surfaces inside the human body. Those caring for people with dementia should keep in mind the known characteristics of the virus and how that might affect this group.

In the months since COVID-19 first emerged, research has shown that:

  • Humans spread coronavirus through their respiratory tracts.
  • It can also spread into the body through saliva, mucus, and even through the surface of the eye.
  • Once inside the body, coronavirus spreads quickly.
  • Coronavirus can potentially live on hard surfaces for nine days or longer if not removed.
  • Animals cannot transmit the virus to humans.

Because people with dementia may forget to wash their hands or take other precautions to avoid illness, healthcare workers need to be diligent in taking steps to protect patients and staff. Research focusing on how COVID spreads reveals:

  • The virus is most likely spread by face-to-face transmission or hand-to-face transmission.
  • Coronavirus is vulnerable to soap and water, ethanol or alcohol, bleach, and hydrogen peroxide.
  • Coronavirus can survive on surfaces for only a limited time, but it dies faster upon exposure to common cleaning products.

Impact of COVID-19 in Long-Term Care

As of mid-November, the United States had already seen 11.3 million cases of COVID-19 and 248,000 deaths, according to Johns Hopkins University. In Snow’s September presentation, she shared estimates that 30% to 40% of deaths have been among long-term care residents.

Those living in congregate settings naturally face increased risk of being affected by respiratory pathogens. Therefore, following infection control and prevention guidelines from the Centers for Disease Control and Prevention and state and local officials is vital.

Between 3% and 5.2% of people who develop COVID-19 will die. In comparison, about 0.1% of the public dies from the flu.

Snow’s figures from September showed 231,957 confirmed cases of COVID-19 among long-term care residents. With 136,259 suspected cases, the total potential cases in long-term care were 368,216. With 55,845 confirmed COVID-19 deaths in long-term care facilities at that time, the risk of dying appears to be much higher than in the general population.

The number of long-term care residents who did not have COVID-19 but who died from dementia has risen since the start of the pandemic. Since mid-March, dementia has claimed the lives of more than 134,000 people living in long-term care facilities. This is 13,000 more deaths than a year ago.

The pandemic shined a spotlight on differences in the ways long-term care facilities report illnesses among residents. Assisted living communities do not have to report in the same way as nursing homes, for example. This means less data is available for COVID-19 rates in assisted living facilities. Reporting shows that cases of COVID-19 among staff are rising and that deaths have increased 59 percent since June.

Lessons About Patient Care

Many of the most important lessons about dementia and COVID-19 have more to do with patient care than with the virus itself. People with dementia behave differently than those without the disease, and individuals with dementia will experience the disease in varied ways.

People with dementia may use their hands differently, for example. They may hold onto the sides of tables or the front of their shirts. Routine cleaning for coronavirus might miss these surfaces, thereby putting dementia patients at higher risk for transmission.

Long-term care facilities enacted emergency plans to deal with the coronavirus disease in March. Now they must build a sustainable program that helps people with dementia and their caregivers move forward. These long-term plans can include:

  • Techniques for physical engagement that provide comfort and safety, such as visual cues.
  • Providing solitary confinement as needed to control the virus.
  • Unit confinement with the use of PPE as available.

Each facility should consider what works best for the individuals needing care and the staff’s ability to provide that care. “We also have evidence that secluded units work as well or better than single room isolation for controlling COVID spread when we have dementia units,” Snow said. Either of those arrangements might work for reducing COVID spread, she asserted.

Fine-Tuning Daily Activities

Adapting routines to allow people living with dementia to interact with others is an important goal, and extra precautions can help achieve that goal. Facilities might need to fine-tune daily activities to include:

  • Social engagement that matches the individual’s needs and wants.
  • Unit and family engagement.
  • Use of PPE for personal contact and confinement suited to the situation.
  • Consistent groupings.
  • Staff training.
  • Effective supply chains.

COVID-19 has provided a valuable lesson in striking balances. Perhaps the most significant challenge is balancing dementia best practices and COVID-19 best practices. Tips for success include:

  • Providing options and choices that are attractive, affordable, available, and as advertised.
  • Acknowledging and addressing problems.
  • Ensuring that each person feels supported and heard.
  • Creating supportive environments.
  • Creating time for staff self-care and to care for others.

In her presentation, Snow noted, “During a pandemic, isolation patterns and infection rates for staff and for residents…have really varied incredibly. There is just such a wide range of what people did, how they did it, what the infection rates are for either staff and/or residents, and how well they’re living.”

We can learn a lot by looking at how people responded to the pandemic and the consequences of those responses. These lessons can shape our long-term approaches to dealing with COVID-19 while providing outstanding care for those with dementia.


Provide High-Level Dementia Care

Dementia care can be difficult because not all patients will experience the disease in the same way. It may affect a person’s mood, thoughts, motor activity, and personality. Learn more so your team can provide the best care for people living with dementia.

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