Tools to Optimize Quality Alzheimer’s and Dementia Care: Tackling Loneliness and Social Isolation

Introduction

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:
  • Cardiovascular
  • 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.

Reminders Regarding

• 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
• Handwashing
• 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.

As OTs, the other thing that is intuitive to us is setting 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.

Person-Centered Care

• 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, we need to assess for any swallow difficulties. Depending upon the facility, a speech-language pathologist may do that. We can certainly assess this area of ADL and make appropriate referrals.

Walking and Unsafe Wandering

• Provide safe spaces to walk about
• Secure the perimeter of areas, if possible
• Ensure that persons with dementia get regular exercise
• Provide structured activities throughout the day
• Spending time outdoors in a safe environment

Walking is a very purposeful motor activity. It promotes mobility and strength. A person who has COVID is isolated. They may be in bed and are weakening over time. They can become debilitated the longer that they are in bed. Anytime we can get people up and moving is critically important.

We also want to make sure that we are not encouraging unsafe wandering. This risk increases as a person becomes upset or agitated. You may not think that a situation is overtly stressful for the resident, but it is. There has been a change, and they may not necessarily understand the why behind the change or what the change is, but it is a palpable change. We will see behaviors related to that.

We need to provide a safe space to walk by securing the perimeter. We want to make sure that they get some regular exercise. We also want to provide structured activities throughout the day. Many times people get up and wander away because they are bored and looking for something to do. They are looking for something to engage with or somebody to talk to. The more we that can provide that structure, the better off we are. We also want them to get outdoors as much as possible.

Root Causes of Behavior

• Pain
• Hunger
• Fear, depression, frustration
• Loneliness, helplessness, boredom
• Hallucinations and/or overstimulation
• Changes in environment or routine
• Difficulty understanding or misinterpreting the environment
• Difficulty expressing thoughts or feelings
• Unfamiliarity with PPE

When we look at different behaviors, they are oftentimes triggered by the individual and their interaction with their social and physical environment. We may see striking out, screaming, or what have you. Behaviors are typically somebody with dementia trying to communicate a feeling, an unmet need, or an intention.

Responding to Behaviors

• Rule out pain, thirst, hunger, or the need to use the bathroom as a source of agitation
• Speak in a calm low-pitched voice
• Try to reduce excess stimulation
• Ask others what works for them
• Validate the individual's emotions

We want to respond to these behaviors. I think a lot of us do this intuitively. We want to rule out pain, thirst, hunger, and all those bodily functions as a source of agitation. Speak to that person in a calm, low-pitched voice, and try to reduce the stimulation. Validate their emotions, and focus on their feelings. This is not necessarily what they are saying or the content of what they are saying. Sometimes, it is just the emotion that they are trying to convey to us that might be a little bit more important.

I skipped over the fourth bullet point purposefully. Ask other people what works for them. There is always one particular person on the team that a person really connects with. You can say, "What's working for you? How are you getting this person to respond to you? You have such a great rapport."

• Understand that the individual may be expressing thoughts and feelings from their own reality
• Try to determine what helps meet the person’s needs and include the information in the individualized plan of care
• Be aware of past traumas
• Never use physical force

Understand, too, that the person is expressing thoughts and feelings from their own reality. You want to offer reassurance and understanding. Do not challenge them or argue. This is dementia 101. Try to meet them where they are to determine what their needs are. Again, this is a skilled intervention that we, as OTs, can bring to the table. We can look at some of these overt behaviors to determine our approach. Is it the environment? Is that the number of steps? Is it my tone of voice? Educate others and bring that into the plan of care.

Obviously, we must be aware of past trauma. This is outside of this session's scope, but veterans and individuals who have survived abuse or large-scale disasters can really be affected by this isolation. You may need to pull in all your trauma-informed care skills to address that.

Of course, never physically force someone to do something.

Proactive Strategies

• Provide a consistent routine
• Use person-centered care approaches
• Promote sharing of person-centered information across the care team
• Treat individuals living with dementia with dignity and respect
• Put the person before the task

Here are some proactive strategies. It can be difficult to anticipate and respond to these dementia-related behaviors in a constantly changing environment, especially in emergencies. Where and when we can, we need to provide a consistent routine and use person-centered care approaches. I said this before, and I will probably say it 10 more times, everything we do is an opportunity for engagement. Share that information across the team.

Treat individuals with dignity and respect. Put the person before the task. I think inherently we do this, but we sometimes hear, "Oh, it's your shower day. You have to take your shower today." We can pause for a moment and try to connect with them and have a dialogue before doing that task. This is showing that person how important they are. The first step in caring is trying to understand those changes in behaviors and worsening symptoms. And, if we do see those, it may not be a result of a task or the environment, but it could be an exacerbation of COVID or some other disease. It is so important to recognize that as well.

Routine

• Routine can reduce the stress of isolation
• Routines help the person know what to expect
• Can improve self-esteem, dignity, and confidence
• Reminders help during the earlier stages of the disease
  • At later stages, color cues, pictures, and cues will help
• Allow the person time to do it him or herself!!  
  • Go slow and be patient
  • Focus on what he/she CAN do

Routine is one thing that has helped individuals through all of this. Whether you are in isolation and have dementia or not, maintaining some sense of routine every day has just been so helpful. A routine tends to mitigate our stress response when we are dealing with trauma. COVID is a trauma to all of us. Routine helps that person with dementia know what to expect. It helps them do things independently, which helps them with their self-esteem, dignity, and confidence. It is important to continue the routines that they have come to know their entire life as much as possible. Again, things are changing. However, if they have always bathed in the morning, let's try to make that happen. Carrying out the activities in much the same order every day helps them know what to expect. It is their routine that we need to follow, not necessarily ours, but also recognizing that there might be changes related to COVID. This is where OT may be able to step in and help with cues, reminders, or pictures. It could be a toothbrush template on the counter to know that they need to brush their teeth. Perhaps we lay out clothes or teach nursing to lay out their clothes in the order that they put them on. Whatever it happens to be, we can set up that cueing hierarchy for nursing to follow.

As OTs, we know that it is best to allow the person to do it themself. This is incredibly frustrating for family members and other caregivers when they know they could do the task so much more quickly and more efficiently. But, we have to teach others to avoid that temptation to take over, even when they struggle a little bit, as this takes away their confidence. If we take that away, it will make it much harder for them to keep trying. You can do the task together instead of doing it for them. When talking through activities, focus on what they can do versus what they cannot do. Go slow, be patient, and take breaks. Try to find that sense of humor and be encouraging. I think we do this, but this is a teaching opportunity for the nursing and activity staff. 

• Try breaking the task down into sections
• Carrying out one or two steps can give a sense of achievement
• Reminders or instructions should be simple
• Be tactful

Teach them how to break it into sections. This is task analysis. The resident may find it easier to continue dressing if we put their clothes out in order. We could pass them each garment as they are dressing. Maybe, they put it on over their head, and we help them straighten or something. Even if they cannot complete the whole task, carrying out one or two steps, particularly the final step, can give them a real sense of achievement and accomplishment. We want to focus on that.

Reminders and instructions should be simple: short sentences, gestures, body language, and those sort things provide meaning. Lastly, always be tactful. Imagine that you are the person receiving help. Speak and act in a way that you would find helpful if you were in their position. My husband just had rotator cuff surgery and requires a lot of assistance right now. I am teaching him one-hand dressing techniques. He said, "It is interesting being on this side of it. I can understand how your patients feel." Try to put yourself in their shoes.

• Do things together
• Integrate regular activities into the daily routine
• Ensure he/she does not feel supervised or criticized in any way
• With advanced dementia, try pointing, demonstrating, or guiding action rather than giving a verbal explanation

We already said this, but try to do things together. It could be folding clothes, drying the dishes, or some activity that can be done in their room or somewhere in the facility. Integrate those into the daily routine because it gives that person something to look forward to and a sense of purpose. We will talk more about that in just a second. Make sure the person does not feel supervised or criticized. Much of this relates to our body language, tone of voice, and the words we use. Remember to use cueing strategies like gestures, demonstration, and guiding versus a verbal explanation.

Loneliness and Social Isolation

• Social isolation refers to the objective absence or paucity of contacts and interactions between a person and a social network
• Loneliness refers to a subjective feeling, a state of being alone, separated, or apart from others, and has been conceptualized as an imbalance between desired social contacts and actual social contacts

Let's switch gears now and talk a little bit more about loneliness and social isolation. As we are heeding public health and government officials' advice to remain physically distanced from everyone, neighbors, friends, relatives, et cetera, we are exacerbating another epidemic, which is social isolation. There are many negative consequences related to social isolation corroborated in the literature, like heart disease, depression, and even death.

We hear social isolation and loneliness oftentimes used interchangeably, but they are very different concepts. Social isolation is the objective absence or paucity of contacts and interactions between a person and a social network. Loneliness is very much a subjective feeling. Being alone, separated, and conceptualized as an imbalance between desired social contacts and actual social contacts. Despite the difference, there is a lot of overlap between the two. Both of these concepts result in a negative self-assessment of health and wellbeing.

• Social isolation is certainly not just an American phenomenon or a COVID issue
• Before the pandemic began, studies indicated that nearly 25% of older Americans were socially isolated
• 43% of those age 60 and older report feeling lonely
• Loneliness and social isolation impact health
  • 26% increased risk of dementia
  • Increase risk of mortality by up to 29%
  • Chronic conditions – CAD, CVA, HBP

Social isolation is not just a United States or an American phenomenon, or even a COVID issue. A study done in 2017 looked at 11 different high-income countries, and it showed that anywhere between 10 and 30% of all adults 65 or older reported feeling isolated from other people. Even before the pandemic began, national studies showed that nearly 25% of older Americans 65 or older were socially isolated, meaning that they had few social relationships and infrequent social contact. Almost 33% of middle-aged, older adults experience loneliness. A large percentage of older people feel lonely. Thirty-five percent of people 45 and older and 43% of those 60 and older feel isolated and/or lonely, and again, there are many negative health conditions.

A meta-analysis in 2015 looked at how increasing loneliness increased the mortality rate by 29%, increased the risk of dementia by 26%, and increased conditions like coronary artery disease, stroke, and high blood pressure. While anyone can feel lonely and isolated, these reports show that older adults are at higher risk because they have chronic illnesses. They may have hearing loss or other sensory impairments. They may live alone. They have had many deaths of friends and family members.

We have talked a lot about the myriad health-related conditions related to having few social connections. And as you know, people are staying away to prevent exposing their loved ones to the virus. While that is protecting people, it can also exacerbate these other health risks. Without that meaningful social connection, cognitive function can decline. We also see depression. This is a perfect storm for factors related to depression, anxiety, and even suicidal thoughts in long-term care, assisted living, and independent living.

The other thing is that remaining in your home makes it harder to engage in healthy lifestyles. Without exercise, muscles are weakening. This leaves older adults more prone to falling. Inactivity may also lead to weight gain, which also exacerbates other health problems like declining heart function and lung capacity. They may have difficulty accessing healthy food, which is obviously critically important for health. While not everyone will see all these same impacts, older adults are most likely to be affected.

Stay Active and Engaged

• Plan the day
• Stay physically active
• Think of others
• Accept help from others
• Promote intergenerational connection
• Encourage older patients to keep in touch with family and friends

What can we do? First and foremost, plan the day. This is imperative for somebody living alone and in skilled nursing. While the days seem like this endless blur, daily routines like getting dressed and being engaged in small activities can help. It can be an online class, a call with family members, reading, puzzles, cooking, or whatever to provide meaning. Having a whiteboard or a calendar to see what the plan is can also be helpful.  

Helping residents to stay physically active is something where we can be involved. We can find exercises that can be done in their room. There are also a lot of virtual things and online activity programs.

It helps individuals reach out to other people who might just need to hear a friendly voice on the phone. They can also do this virtually.

Many different organizations are working so hard to keep our seniors socially connected. This might be an opportunity for us or social work to connect individuals in our community. We also want to promote intergenerational connections. I do not know a single person who does not want to hear from their grandkids or receive their artwork.

Help Stay Connected

• Scheduling telephone or video calls
• Developing a “What You Should Know” fact sheet
• Provide information about how families can receive updates
• Ensure adaptive devices are available where appropriate
• Remember that each family is unique

We want to encourage people to stay in touch. There is physical distancing, but this does not mean social distancing. People have to have those connections right now. This could be a video chat app, a chat via phone, an old-fashioned letter, or a postcard. We need to help people to stay connected.

We can develop a "what you need to know" fact sheet. This could be posted in the person's room and include a collage of pictures or information about their family members. Then, as caregivers go in and out of the room throughout the day, they can ask, "Hey, how's your brother so-and-so doing?" or, "How is your niece doing? "You told me this was going on." This creates a dialogue.

Provide information about how families can receive updates. This is really important because our families are not necessarily there. From a therapy perspective, they want to know how their loved ones are doing with their transfers, ADLs, etc. Get creative and figure out how we can do that. Ensure that adaptive devices are available, whether assistive devices for walking or transferring or something for ADLs like a hearing aid, glasses, et cetera. 

Every family is unique. For some people, their closest supporters may not be their biological family members. It could be friends or community members. We need to help them to connect. Again, I think we have an opportunity as OTs to do that. An example would be somebody who has low vision. We can assist them in making a phone call. There could be some communication issues, and we can assist with that. Social connection means everything for these individuals.

• Persons with dementia and their families are disproportionately affected by social distancing, isolation, and lockdown
• Remember that any approach is not a “one-size-fits-all”

In this time of physical distancing, this is a complicated concept for them to understand. While some may not be vulnerable on health grounds per se, individuals with dementia and their family caregivers are disproportionately affected. Research shows that people living with dementia have felt isolated long before COVID, and now it is amplified.

Before we start planning, it is important to understand that it is not a one-size-fits-all approach. We have to consider the level of cognitive and physical decline. What skills are spared? What abilities are remaining? What environmental cues are going to work? What kind of cueing hierarchy will work, and then we develop an activity program around it. When I say activity, this is a meaningful, purposeful activity in which the person can engage. While they may not complete some tasks, they still have the same tastes and preferences. How can we adapt it? Is there a way of doing something non-verbally? Is there a way to set up something that does not require a lot of setup and gives them immediate feedback? Teach people to do things together. We can shine when we can figure out what those activities are and supporting the engagement within them.

Practical Ideas

• Reminisce
• Engage the 5 senses
• “Compare and contrast”
• Reflect
• Plan together
• Purposeful activity
• Laugh
• Connect with loved ones
• Virtual experiences

This will hopefully get you started with a few ideas. The first is reminiscence. This is an easy one. You can sit with the resident and look at old photographs, books, magazines, or whatever. It is a way to engage and allows that person to tell stories. Their long-term memory is probably still there and intact.

Engaging the five senses is another. There are a ton of possibilities. You can watch a movie, explore websites, or look out the window to watch birds. For sound, you can listen to music or sing together. Dancing is great for getting some good motor activity. Touch can be stimulated with familiar objects or fabrics or even just folding laundry. You can cook or eat together to engage taste and smell. You must help them engage their senses to continue to connect with the world around them.

You can do an easy compare-and-contrast activity. As I am throwing out these ideas, I just want to back up and say that this does not have to be OT doing this. You could train nursing, activities, social work, or a volunteer to do some of these. In fact, many communities now are using students where possible to do some of this engagement. Comparing and contrasting is spotting the differences between some images and talking about that.

Simple reflections could be letting them talk about their accomplishments, family, achievements, awards, and so on. This gets that person reminiscing as well.

We already talked about planning. "Hey, tomorrow I have XYZ that we are going to be doing in the clinic. Can you help me plan that? Can you tell me what ingredients I would need?"

Purposeful activity is again where we shine. Activities have a clear purpose like cleaning out a drawer, organizing their photos, watering or deadheading plants, or whatever it happens to be. This is figuring out how to connect with their interests and hobbies and giving them a purpose.

Of course, laughing can be really valuable. We have talked about connecting with others, and we will talk about that more in just a second. Virtual experiences are wonderful. Many residents are not internet savvy. This does not necessarily matter. If you can assist them with this, online activities can engage them quite a bit. For example, they can visit museums around the world. There is a great grow-a-garden activity through the San Diego Master Gardener Program. There are also many zoo programs. Travel logs online are really popular as well. The sky is the limit. There are so many virtual things out there that you can do. As my mother would say, poo-poo the idea that the person might not want to participate simply because they have dementia or are a little older. 

Keep a Sense of Purpose

• Make a list of jobs and pleasurable activities and create a daily routine
• Make a plan for the next day
• Post the timetable
• Make a list of things to do and tick each one off when finished

Keeping a sense of purpose during this difficult time is so important. This is where we talk about planning again. Make a list of the things that the person enjoys and help them create a daily routine. Make a plan. It could be on a whiteboard or a list on the fridge. They could plan the whole next day or week. These are things that they enjoy or can look forward to doing. This is offering them a sense of purpose and a little bit of hope. They can tick those things off when they are finished. These are both things to look forward to and give them a sense of accomplishment when complete.

Stay Active

• Try to have a balance of stimulating and relaxing activities
• Adapt activities that you would normally do outdoors
• Get plenty of daylight and fresh air
• Appreciate from the window

We need to bolster their activity levels if we can. This should be a balance between stimulating and relaxing activities. There are many things online that we can find. We can also adapt things that we would normally do outdoors. We want to make sure that residents see daylight and get fresh air whenever possible. This could be sitting them right by the window or at the doorway. This helps to boost well-being. You could put out some food for the birds as an activity.

Stay Connected

• By phone
  • Make a list of people to phone and plan when to call each one
• By post
  • Write letters or cards to loved ones
• Online
  • Email, skype, virtual connections
• In your thoughts
  • Look through photo albums
• Connect more widely
  • Make contact with people you haven’t heard from for a while

One of the things that I have seen that is really helpful is helping residents to make a list of people to contact. I am sure many of us can think of people that we have not contacted in a while. We can help residents to make a list. Now is the time to reach out. You can facilitate these activities as an IADL. You can certainly do that virtually as well via Skype or Zoom. If this does not work, you can do things in an old-fashioned way. Help them to write letters and cards. You can make some photo albums or encourage them to make a book about their life with photographs and text. They can also start a diary by hand or on a computer. They can create a cheerful display in their window or the front garden. I have seen people putting a picture of a rainbow in their window as a symbol of hope. 

• Create a “Connections Plan” 
• Recognize that all forms of social connections are important to health, including “superficial” social interactions 
• Instrumental and emotional support are social connections
  • Consider using the Questionnaire for Assessing the Impact of the COVID-19 Pandemic on Older Adults 
• Community outreach programs (e.g., Well Connected)

We can also assist in making a connections plan. This is very similar to creating a safety plan, if you will, to help patients to manage their suicide risk. I already mentioned this, but I will repeat it--every form of social connection is important to health, even the superficial ones. It can be as simple as saying hello to somebody in a grocery store. "Wow, I really love your shoes," or whatever you might say. Even those superficial interactions are critical health determinants.

When we look at connectedness in general, there are essentially three important facets. The first is social connection. This is what we have been talking about. The second is something called social support, and this involves the functions that relationships provide. Information and instrumental support are part of this. Instrumental support is help with ADLs, coupled with those superficial interactions. A nurse checking on someone or giving them their meds can connect and engage. The third domain is the psychological experience of feeling isolated or connected and loneliness vs. belonging. I bring these three domains up because they are all included in this assessment tool, Questionnaire for Assessing the Impact of the COVID-19 Pandemic on Older Adults. It is a 17-item questionnaire for older adults that is available free of charge. It also includes some information from the UCLA Loneliness Scale. What is nice about this particular assessment tool is that there are open-ended questions in inclusive terms. It allows the person to conceptualize their own barriers to connectedness without adding any stigma that some other terminology or words might use.

I already mentioned community outreach programs. There is one called Well Connected. It is a program that Covia launched. Again, there are many of these types of programs out in the community. Data suggests that having someone to talk to extends your life. These programs offer buddies that can give mental and emotional support, particularly to those living alone. They may not know this person well, but they are in regular contact with them.

There are other programs where people can participate in group conversations. This is offered seven days a week on several different topics, anything from advocacy to books, health, wellness, religion, or whatever. There are also small group options. This is maybe 10 to 12 people with a facilitator. It lasts about 30 to 60 minutes. It involves people from all sorts of backgrounds. These are available in 40 to 50 states. It is interesting to see how friendships develop through that. 

Stay Positive

• Breathing or relaxation exercises
• Listen to music
• Do the things you enjoy
• Maybe try something new (with support)

Deep breathing or relaxation exercises can be taught to both the residents and other staff members to reduce anxiety and elevate moods. We also want people to do the things that they enjoy to the best of their abilities. This where we can come in with an activities profile. They can even try something new with a little bit of support.

Ensuring Safe Quarantine

• Clinical guidance is needed for the development of isolation care plans that address the personhood needs of the isolated resident 
• Care plans must incorporate safeguards to minimize any harms
• Guidance about the use of pharmacological management, seclusion, and physical restraint measures
• Need for staff and staff training to support these measures and infection control

Before I continue, I do just want to make a quick comment about compassionate and safe quarantine. Again, this has been a real problem. Individuals who have dementia rely on their healthcare providers. There is really no option for physical distancing and using PPE in some cases.

There are obviously ethical and legal issues for involuntary confinement. Additionally, there is possibly harm that goes right along with that. Unfortunately, there has not been as much guidance as we would like to see on how to isolate safely while maintaining human dignity and personhood truly. We really need to address those gaps for sure. While we recommend isolation as that is important to do, it is challenging to do that while still focusing on human dignity. We can help our community partners develop isolation care plans that still maintain personhood and minimize harm. 

We may also be able to help with guidance about pharmacological management. This is not our role as OTs, but we know that having meaningful and purposeful engagement will oftentimes decrease those behaviors and the need for medication.

There have been staffing shortages, a lack of training, and decreased resources. Can we help with education? Can we support the use of restraints and prevent falls with training? How are we preventing deconditioning? We have an opportunity to promote health and wellness for our individuals. 

When we look at loneliness in a nursing home, the prevalence is at least double of that in a community setting. We see about 10% of the community population who experience severe loneliness. We see anywhere between 22 and 42% in care homes. Interventions are always going to be with meaningful, purposeful activities. And if we isolate in place, it is not very easy to continue that meaningful, purposeful engagement. Additionally, facilities are prohibiting outside visits, and family members cannot come. Often, the family members help the person with dementia eat, complete ADL, bring in food, et cetera. There is significant upheaval in routines that we need to try to get back to.

Decreasing Loneliness

• Name tags
• Using a computer to stay connected
• Stay connected with family members via phone (or trained volunteers)
• Come to the window
• Urge families to send cards, letters, artwork

Some of the things that are on this slide are really super easy to do. They are no cost and do not require additional staff. Some people think name tags are condescending, but everybody wears name tags if you go to a Montessori type of care home. You want to make sure it has Times New Roman lettering in a large font. This can help to make a connection between the staff and the residents. You can ask family members to get a computer to help them to stay connected. Or, can they give them a phone, an iPad, or something? This can be an opportunity for us to teach them how to use that. Perhaps, one family member can call in the morning to say good morning, and another one can call in the evening to say goodnight. If there are no family members, perhaps volunteers can engage them. Again, cards, letters, and artwork are all good things.

• Online religious services
• Simulated Presence Therapy 
• Sorting items (Montessori?)
• Mobilizing Volunteers and family members

There are online religious services. For many of us, attending church is not an option. Many services are now broadcasting on YouTube. Simulated presence therapy is also wonderful. If you are not familiar with that, it is a reminiscence activity with the family members making the recording. It is unique to that person in the family member's voice, and then there is a pause for the resident to reminisce as well. Tapping into a Montessori approach again, you can have them help sort things, like towels or buttons, or set the table. This is an opportunity for them to feel needed.

• Digital Solutions
• Animal interventions
  • Animal-assisted therapy
  • Owning a pet
  • Robotic pets
• Creative and art therapy
  • Painting, drawing, music, etc.

I recently saw a company that developed a one-button computer designed to help people with no experience using smartphones or computers. These are types of things that we can talk about with our family members. Animal interventions and animal-assisted therapy are great. Perhaps the facility has a dog or cat. There was a study done in 2012 by Krause and Parello that talked about pet attachment alleviating loneliness by acting as a coping mechanism and providing social support. In fact, a randomized controlled trial by Banks and Banks found the same thing. An animal-human connection was responsible for a reduction in loneliness. If they can own a pet, great. If not, a robotic one might be a good solution. There is a lot of excellent research coming out about robotics right now. New York was actually the first state in the United States to test robotics with isolated older adults. Their studies have already shown that using pets to lower social isolation is highly successful. 70% of the pilot participants reported a decrease in isolation after a full year of using a robotic animal. We can also get creative with art therapy, such as painting and drawing. Music is another option. They can use these to continue to express themselves if they are nonverbal.

• Leisure skills
  • Productive activities (e.g., hobbies) are associated with a reduction in loneliness
  • Passive activities do not (e.g., TV, radio)

We need to tap into what is important to that resident. It may be volunteer work, holidays, sports, or art. Toepoel, in 2013, did a study looking at productive activities that were associated with a reduction in loneliness. These are hobbies or something meaningful. Passive activities, like TV, radio, or sitting in the dayroom, do not combat loneliness.

Case Example

• Activities met with Mr. Y individually to engage in reminiscence around themes of work, leisure, and friends or family to clarify what was important to him in his social relationships
  • He had difficulty remembering
• Together they created a scrapbook of family memories and a poster that visually represented important things that Mr. Y wanted others to know about him
  • This was hung in his room to cue meaningful conversations with others
• The therapist taught him deep breathing and relaxation techniques
  • Nursing cues him to complete several times each day

Mr. Y had dementia and was really struggling with isolation. He had a lot of difficulty remembering his family members, friends, and what he was supposed to do. The activity department created a scrapbook of family memories and a poster that visually represented everything important to him. When people would provide care, they could engage him in conversations about things that were on that poster. Additionally, he was very anxious. The therapist, in this case, taught him some deep breathing and relaxation techniques. Nursing was able to cue him to do these when they went in. These are straightforward interventions but very impactful.

Key Take-Aways

• Interventions that are aimed to preserve autonomy are more effective (Hemingway & Jack, 2013).
• Older people wish to be involved in decision-making and be supported in their choices (Cattan & Ingold, 2003).
• Activities were more likely to be effective if older people were involved in the planning, developing, and execution of activities (Wylie, 2012).
• Older people often find organized “activity programs” patronizing (Pettigrew & Roberts, 2008).
• Active engagement is more effective than activities that are passive (Pettigrew & Roberts, 2008).

First, interventions that preserve autonomy are always going to be the best. Allow that person to choose and to be as independent as they possibly can. Older people want to be involved. They want to be supported in their choices. In 2012, Wiley did a study that showed that activities are more effective if people are actually involved in them. In contrast, when they are organized and decided for them, they felt like they were being patronized. Active engagement is going to be much more effective than anything passive.

• Productive engagement may include solitary activities
• ‘Doing’ things accumulates more social contacts than watching or listening to things (Toepoel, 2013)
• Activities that presented a challenge are most appropriate (Howat et al., 2004)
• Promote a sense of purpose
  • Individuals with a sense of purpose are less likely to experience the effects of social isolation

Keep in mind that productive engagement does not have to be a group or fancy. It can be something that they can do by themself. Doing things creates more social contacts than watching or listening. It is productive, active, and creative. It is aimed towards some sort of goal. Give them a challenge because adults want that. We can obviously provide them that just right challenge and maybe push them just a little bit out of their comfort zone. This something we talk about in a Montessori approach quite a bit.

We want to promote that sense of purpose. Individuals who have a purpose, hobbies, and interests are inherently social in nature. We can give them purpose and meaning in their activity. In doing so, they are less likely to experience those effects of social isolation.

Question and Answer

There is a website called beremembered.com. It is a website that asks questions about their life and how they want to be remembered. For example, you can ask them to tell you about how they met their spouse. Or, where was your first date? There are all kinds of questions and themes. It is a fun way to ask things that most people or families do not always talk about. You can also upload audio or video, if appropriate and authorized, of course.

Thank you so much! That is a great opportunity for us to help a resident to navigate to this site and help them to fill this out. We can also share this with the care team. 

References

Available in the handout.