Even during normal times, individuals who have Alzheimer's disease or a related dementia are the most vulnerable persons in our society. They depend on family members and professional caregivers for their day-to-day survival. Our current pandemic is exacerbating that vulnerability due to the morbidity and mortality from COVID-19 and the pandemic's indirect effects on the social supports upon which these individuals depend. For those who have dementia/Alzheimer's, social connection is everything. Whether you call it social distancing or physical distancing, it does not matter as it is a difficult concept for them to understand. Unfortunately, these individuals are very much disproportionately affected by distancing, isolation, and lockdown.
The Dementia Genotype and COVID-19
- Dementia genotype may increase COVID-19 vulnerability
- Might increase the risk of developing a more severe case of COVID-19
- Other risk factors:
- Living in a care home
- Less likely to follow safety procedures
The dementia genotype may increase vulnerability. A study was published in the "Journals of Gerontology," and it talked about having the genetic component of dementia and how that might increase the risk of developing a more severe case of COVID-19. This is not only developing COVID-19 but a more severe case of it. There is an association obviously between Alzheimer's dementia and cardiovascular issues. That might be one reason why they are a little more at risk. And obviously, cardiovascular issues are likely to increase the chances of somebody dying if they contract COVID. Also, somebody with dementia or Alzheimer's is probably living in a care home. We know that these facilities have been and continue to be key sites for spreading the disease. We also know that it affects cognitive function. A person who is less able to follow safety protocols may have a greater risk of exposure. These risk factors suggest that genetic conditions can contribute to dementia, increasing a person developing a more severe case of COVID. Again, this study looked very specifically at the gene related to dementia, not necessarily if someone had a diagnosis. That is an important distinction.
- Hand-washing and moisturizing
- Covering nose and mouth during a sneeze or cough
- Refraining from placing things in the mouth
- Staying in a particular area
- Taking medications appropriately
- Adopting social distancing practices and refraining from sharing items
Dementia does not increase the risk for COVID, just like it does not increase the risk for flu. However, dementia-related behaviors, increased age, and common health conditions that can go hand-in-hand with dementia may increase that risk. We know that these individuals will need a lot more reminders for hand-washing, covering their nose and mouth, staying in a particular area, and following any procedures or precautions related to physical distancing. We also know that infection control will be a challenge to implement in any sort of dedicated memory care unit where there are many residents with cognitive impairments residing together.
Infection Prevention Challenges
- Following recommended practices
- Physical distancing
- Cloth face covers
- Changes to routines can lead to fear and anxiety, resulting in depression and behavioral changes.
Residents will probably have difficulty following infection prevention practices, physical distancing, washing their hands, and avoiding touching their faces. Wearing a cloth face covering is also going to be a challenge. They may not recognize regular caregivers when wearing face coverings and have behaviors related to that. There are also significant changes to routines, disruptions in the daily schedule, and unfamiliar equipment. They may have to work with new staff if normal caregivers are out sick or quarantining. This all can lead to fear, anxiety, depression, behavioral changes, agitation, aggression, wandering, and the like.
Suggestions for Memory Care
- Maintain routines
- Dedicate personnel for the memory care unit
- Structured activities
- Safe ways to be active
- Limit the number of residents in common areas
- Frequently clean often-touched surfaces
- Ensure access to necessary medical care
A routine is going to be so important. We need to keep the environment and routine as consistent as possible. Assisting and reminding of frequent hand hygiene, social distancing, and the wearing of cloth face coverings is going to be really important. Routine can help all of us but especially individuals who have dementia.
It is important to keep the staff consistent as much as possible. It is important to limit personnel on the unit to only those who are essential for care. Structured activities can be things in residents' rooms and staggered throughout the day to maintain physical distancing. As an aside, somebody asked me not long ago what the biggest takeaway from COVID was. "What do nursing homes really need to focus on? Do we need to add more respiratory services or this or that?" And I said, "I think we all need to figure out how to infuse structure and meaningful, purposeful activity for the person who is confined to their room." This is not just relying on the activities department to do that. There needs to be an interdisciplinary team approach. This has been a real "aha" moment. We all need to do a little bit better job in this area.
We need to find safe ways for our clients to be active. It could be walking with personnel, limiting times that people can walk, or providing certain areas where they can walk. We also need to limit the number of residents in common areas. We started to do some more stuff in the common areas, but this was often shifted to the clients' rooms as cases rose.
It is important to look at what is feasible. Can we do an activity? Can we do a group? Can we be in the dining room and maintain that six-foot distance? Obviously, this is with proper cleaning of often-touched surfaces and ensuring that we have medical care there.
Infection Prevention and Control
- Consider placing reminder signs for handwashing in the bathroom and elsewhere
- Demonstrate thorough hand-washing
- Use alcohol-based hand sanitizers
Again, I am not telling you anything you do not already know, but this might be something where we as OTs step in. They are going to need extra reminders that are not verbal. We may use signage or pictures. We may need to demonstrate hand-washing techniques. This is not something that we normally do, but it is an important ADL that we can implement to assist nursing.
We can also encourage the use of hand sanitizer that is at least 60% alcohol. This does not take the place of hand-washing, but it is a great alternative.
In Cases of Suspected COVID
- Consider potential risks and benefits of moving residents out of memory care
- May reduce exposure to risk
- Moving residents with cognitive impairment may cause disorientation, anger, and agitation
- It may be safer to maintain care on the memory unit with dedicated staff
What happens when somebody has or is suspected of having COVID. As challenging as it may be to restrict residents to their rooms, facilities are now considering the risks and benefits. Do I keep that person in their room? Do I move them off the unit? There is no right or wrong answer. This is very much facility-specific. Obviously, if you move them out, it can decrease the exposure risk of other people. However, you have to also factor in that moving them when they have a cognitive impairment could cause more disorientation, anger, agitation, and maybe other risks. There are also safety considerations like wandering as maybe they are trying to get back to their own room or familiar surroundings. The other piece is that people may have already been exposed or have been infected. In some cases, facilities may think it is safer to maintain them on the memory unit with very dedicated personnel. Again, there is no easy answer to that. You have to weigh the risks and benefits.
- If residents are moved
- Provide information about the move to residents
- Be prepared to repeat information as appropriate
- Prepare personnel on the receiving unit about habits and schedules
- Move familiar objects into the space before introducing the new space to the resident
If we do move them, what are some options? We need to provide as much information about the move as possible. Will it sink in? This depends on the level of cognitive impairment for that person. We need to be prepared to repeat the information as often as needed and perhaps present it differently, like gestures, photos, etc.
We also need to preparing staff on the receiving end about the resident's habits and schedules. This is a great area where OT can shine, as this is what we do. This is providing an occupational profile. We can help to educate staff about this incoming person's routine.
Set up their space with familiar objects before the move. This could be a favorite decoration or a photo. This is anything to help them feel a little more comfortable and recognize that that is their space. This would apply to any new surroundings that that person is going into.
Guidance for Families
- Their in-person assistance might be required to communicate important health information and emergency support
- Be prepared to use PPE
- Be aware that providers may face difficulties. Assist as you can to facilitate cooperation with care, PPE, diagnostic procedures, etc.
We also need to educate the families. If someone does need to go to the hospital, what do we do? This can be a struggle for family members as they are not allowed to visit long-term care or assisted living, let alone go to the hospital. This is where we as a team can certainly help prepare and share what they need to know about the resident. The resident may or may not cooperate with care. They may or may not follow the PPE measures, et cetera. They may also refuse diagnostic procedures. The more we can prepare our families when that opportunity arises, we certainly want to do that.
This was an intro to this population. Let's now talk about specific strategies that you can implement to assist with loneliness and depression.
- Know the person!
- Complete a HIPAA-compliant personal information form
- Individual’s preferred name; cultural background; religious or spiritual practices; and past hobbies and interests
- Names of family and friends
- What upsets the person and what calms him or her down
- Sleep habits; eating and drinking patterns and abilities; typical patterns of behavior; and normal daily structure and routines
- Remaining abilities, motor skills, verbal processing and communication abilities and methods
I want to back up for a second and talk about the Alzheimer's Association. In their dementia care practice recommendations, they state that one of the most important steps in providing quality dementia care is to know the person. This sounds really basic, but it is important. You probably see it in your own teams. There is a lot of temp staff filling in, and there is quite a bit of flux. The more that we can know and share, the better off we are.
We can fill out a HIPAA-compliant personal information form. This could be kept in a folder or on the closet door. It needs to be somewhere accessible that meets the HIPAA-compliant policies of the facility. Simple information could be included, like the individual's preferred name, preferred pronouns, and cultural background. Other things to include would be their religious or spiritual practices, hobbies, and interests. It could also list the names of family members and friends that they would want to connect with. What upsets the person? What calms them down? What are their eating and drinking habits, typical behaviors, and daily routines? What are their abilities? What is their verbal ability? Communication strategies? Where are they cognitively? How do you structure a task for success? Having that information is so important for providing quality, consistent, and effective care. As the team will frequently change, regular briefings, like at change of shift, about this information are not bad. Consistency and routines are the goals.
Assist with Eating and Drinking
- Familiarize yourself with the person’s patterns and abilities
- Verbal, visual, or tactile cues may facilitate intake
- Sit and talk with the person during mealtime
- Assess swallowing difficulties
When there is a risk of contracting the virus, an individual with dementia or Alzheimer's needs to maintain their strength. Eating and drinking are critically important. We have an opportunity to educate staff or family members about this. What is the person eating and drinking? What are their patterns? What are their abilities? What kind of prompts do they need? They may not recognize hunger or thirst, which might be further impacted if they have contracted the virus. We need to figure out what kind of cues are appropriate and what kind of adaptive equipment they may need. An example would be high-contrast dinnerware. We may use a graded approach, model the behavior, or use demonstration. We are imparting information to the caregivers to ensure that this person maintains their eating and drinking ability.
Sitting and talking with the person during mealtime is another strategy. This is an easy one but often gets overlooked. We need to look at every opportunity with the resident to engage and communicate, even during ADL tasks like grooming, eating, or walking to the bathroom. We need to use every opportunity as a time to connect with that person.
Lastly, refer to a speech-language pathologist for any swallowing difficulties. We can certainly assess this area of ADL and make appropriate referrals.