Dementia Care and COVID-19: How do we move forward?

Bonnie Burman

Bonnie Burman,  Ohio Council for Cognitive Health
Jennifer Brush, Ohio Council for Cognitive Health and Brush Development

All of us have been impacted by COIVD-19 in many ways, both professionally and personally. The presence of the virus has also created some significant challenges for those living with dementia, especially for those living in long term care communities. In addition, as states work to reopen or partially reopen care communities, the common misunderstanding that individuals living with dementia cannot practice social distancing may result in their continued unnecessary and harmful isolation.

Jennifer Brush

There are two enemies out there right now: the virus and isolation.

While public health officials at the state and local levels are currently working carefully, diligently and effectively to both curb the spread of COVID-19 and ensure that emergency operation plans for pandemics are in place going forward, social distancing amongst those living with dementia has posed unique challenges.

The question we are asking is “Are misunderstandings about dementia and best practices resulting in less than optimal engagement and unnecessary social isolation during COVID-19?”

And our answer is a resounding “yes.”

Many individuals living with dementia can practice safe social distancing with the appropriate person-centered care practices and procedures in place. This is especially important now as states move to partially reopen care communities to visitors when social distancing can be practiced.

The Ohio Council for Cognitive Health is suggesting a focus on the following 4 common misunderstandings about people living with dementia that may result in unnecessary and in fact harmful isolation:

1. It’s impossible to keep people living with dementia 6 feet apart, so it’s safer to keep them in their rooms all day.
2. People with dementia will never remember to wash their hands or to keep surfaces sanitized.
3. Staff cannot effectively communicate with someone with dementia while wearing a mask.
4. It hard to keep someone with cognitive impairment engaged in something for very long.

This article focuses on these challenges by 1) shedding light on the current issues; and 2) providing examples of responses that address the unique vulnerability of those living with dementia.

Approach

The recommendations, and the reframing provided, reinforce CDC published guidelines and provide care communities with evidence based, person-centered approaches and perspectives that will prove to be cost effective over time and will help them fulfill both their priority for safety and their important mission of ensuring maximum engagement for those impacted by dementia. Practical, person-centered approaches that add purpose to the daily routine of staff and residents while keeping everyone safe will be highlighted. These approaches will ensure that well-intentioned efforts of care communities don’t put those with dementia at risk for further cognitive or physical decline. These will include approaches that include engagement but also remain responsive to those who either need to stay in their rooms or apartments or those who want to stay in their rooms. Not everyone wants to be with other people. It’s important to remember that the person receiving care should be at the center of all that we do; that we should be treating the whole person; not just a disease or a set of symptoms. Central to person-centered care are the core values of respect for the individual, the importance of knowing the elder deeply, seeking and honoring the person’s preferences over all aspects of their daily life, and creating a supportive environment that allows for continued participation in familiar and preferred activities, inside and outside.

Case example

We would like to introduce you to Michael. . .

Michael is an 86-year-old man living in a care community in Northeast, Ohio. He moved to the community because his wife could no longer provide the assistance he needs related to medication, bathing, dressing, and toileting as a result of vascular dementia, prostate cancer, and non-Hodgkin’s lymphoma. Michael worked as a technician for the telephone company for his entire career. His hobbies included woodworking, barbershop choral singing, gardening, bird watching, playing the piano, and fixing small machines and appliances. He served in the Army for a short time as a shipping clerk, raised four sons in Maine, and moved to Ohio 15 years ago to be near his oldest child’s family.

When the community was advised to close its doors to visitors and take precautions to reduce the risk of the spread of COVID-19, elders in the community were asked to stay in their room all day. The community put a two-page notice in all residents’ mailboxes about the virus, meals were brought directly to the rooms, and daily newsletters were distributed that contained trivia and word games. A treat cart with desserts or ice made its way through the halls each afternoon to spread cheer.

When staff came in Michael’s room to assist him with bathing and dressing, he repeatedly refused their help. Then the phone calls started. Michael’s wife received 8-10 phones calls a day from her husband, often starting at 6:30 AM. Repeatedly, he read what he could of the notice and newsletters to her, asking why she sent them and what they meant. The print was so small he could not make out all of the words. He asked when she was coming to visit and why his food was wrapped in plastic that he could not open. He called to let her know that he spilled his tray on his bed and that he wasn’t sure where his clothes were. His wife decided to visit by standing below his second story window. She called him on the phone and told him she was outside and to come to the window. He was unable to follow her directions to raise the window blinds and open the window. All she saw were hands moving around the edges of the blinds.

The family had a phone conference and decided to “mobilize the troops.” The sons set up a calendar schedule for calling their dad, one of the grandchildren created a personalized CD with all of Grandpa’s favorite music on it. Directions for using a simple CD player were created in large print. A card table, folding chair, nuts and bolts, tools, and sorting and sanding activities were assembled into kits. A memory book describing Michael’s life was create by his daughter in law. All were delivered to the AL along with a care package of favorite snacks. When his wife called to ask how he liked all of his gifts, Michael asked her to come and take it all away. By himself, he was unable to make sense of it all.

He needed someone to set up each time and slowly demonstrate how to use each item, relating each activity to his past and his interests. He needed opportunities to fix things, move, exercise and sing, just like he had his entire life. If someone had known his past preferences well and had been trained in dementia care best practices, staff could have opened the blinds and window, and set the table next to it. Michael could have looked outside, watched the birds and sanded a birdhouse while listening to his favorite music. The family were disappointed that this hadn’t been taken care of automatically and that they had to specifically asked the care community to staff to do this.

Finally, after 8 weeks, a life enrichment staff member, set up a virtual visit on her personal cell phone so that Michael and his wife could see each other. A sense of calm and relief set in as soon as their eyes met.

This care community had the very best intentions to keep everyone safe and to provide assistance and engagement. The problem is that person-centered care isn’t a one size fits all approach.

Key Questions

What have we learned from this story that will help us now and into the future and as strive to provide person-centered care?

Are misunderstandings about dementia and best practices resulting in less than optimal engagement during COVID-19? And, how are these misunderstandings impacting states’ efforts at reopening or partially re-opening long-term care settings?

Again, here are some common misunderstandings about people living with dementia that resulted in Michael’s isolation:

• It’s impossible to keep people living with dementia 6 feet apart, so it’s safer to keep them in their rooms all day.
  • People with dementia will never remember to wash their hands or to keep surfaces sanitized.
  • Staff cannot effectively communicate with someone with dementia while wearing a mask.
  • It hard to keep someone with cognitive impairment engaged in something for very long.

Here is another way at looking at the situation that would have enhanced Michael’s sense of well-being while keeping him safe during COVD-19.:

• People can sociably distance by engaging with different personalized activities at tables that are safe distance part, in their rooms with door open, and in small group activities in well ventilated areas. A small worktable with projects of interest would have relived boredom and decreased anxiety. A schedule during which different people walked throughout the hall at different times of the day would establish a routine of movement while reducing the number of people in the halls at one time. Michael would have enjoyed purposeful cleaning, planting and weeding of outside spaces.
• People with dementia can learn new routines and can follow written cues, gestures and demonstrations by others. In Michael’s situation, a care partner could have invited him to participate in one of the sorting activities. She could have demonstrated the process with her hands positioned so that he could see them clearly and moved at a steady, unhurried pace. This would have allowed him to understand how to complete the activity and be independent engaging with the materials himself.
• Staff who deeply know a person can communicate with their eyes, body language, gestures, and habits that meet an individual’s preferences and needs. Staff could have doffed their mask briefly before entering Michael’s room or approaching him in order to greet him before assisting with daily care.
• Since music activates parts of the brain that are relatively spared by diseases causing dementia, it brings joy and enables those with cognitive impairment to engage in life. It has been documented to facilitate movement, speech, and memory recall. When care partners use these preserved abilities to compensate for the deficits associated with dementia, attention to task increases, responsive behaviors decrease, and affect improves. In Michael’s case, once he was cued to follow the written directions to use his music player, he found great comfort in the familiar tunes.

In the absence of a cure for dementia, socialization and engagement in purposeful activities is a powerful treatment for the symptoms associated with dementia. People with dementia still have a need to feel wanted, to learn new information, have relationships with friends and family, and to contribute to the community. Social isolation as a result of COVID-19 puts elders at risk for decline in mental and physical functioning, loneliness, and depression.

The authors have addressed 4 basic needs that individuals living with dementia have (safe movement within the community, protection against COVID, connection with family, purposeful activities) and provided detailed best practices to consider during this time of COVID-19 and as we move forward. To access the full article, please click here.