Decreasing Caregiver Burnout

Editor’s Note: The text is a transcript of the webinar, Decreasing Caregiver Burnout, presented by Mira Rollins, OTR/L.

Learning Outcomes

After this course, participants will be able to:

• Identify symptoms of caregiver burnout.
• Identify community resources for caregivers.
• Identify specific SLP interventions to decrease the level and frequency of caregiver burnout.

Thank you so much, everyone, for joining me. I am delighted to be here. I'm an OT and in the work that I've done over the past 20 years, many of my goals, care plans, and treatment interventions have been in collaboration with SLPs. So, I feel at home.

Holistic Caregiving Impact

Before we talk about burnout, I need to discuss the opposite end of that spectrum. What is normal or what is baseline? When we look at what baseline function is for a person, there are seven dimensions of well-being. The first one is physical, which is a balance of strength, flexibility, and endurance. It helps prevent disease and add quality of life and length of life. For example, does your back hurt? Are you having a headache? Are you able to walk up some stairs without fatigue? Physical well-being is simply the basic system of your body. How you are feeling when it comes to your bones and all those other major organ systems.

Then there's also intellectual well-being which is engaging in creative and stimulating activities that maintain and increase the function and capacity of your brain. This is the podcast you listen to or how many books you read. I just saw a friend post on social media that she read 36 books this year. I was floored, embarrassed and ashamed. I've probably read about eight, and by read, I mean audiobooks. But that is the way that I feed my intellectual well-being. Another example is playing Sudoku. I play the easy level; you may be on advanced. This is the intellectual part of us and how we stimulate that.

Next is environmental and that's the sense of safety, comfort and connection with your physical surroundings, such as your home or a particular room in your house where you feel comfort and you feel security. Maybe it’s your office space. You simply decorate it with a few pictures of your family. Maybe you have a little plant there because it makes you feel secure in your environment.

Vocational well-being is the idea of using your gifts, talents, and experience to produce income, provide a service and to impact others. This is your work as an SLP, but it also may be your volunteer work with a community or church organization. It could even be the small things you do such as help out a neighbor on a regular basis. It’s the idea of using your talents and gifts to provide a service to someone else.

Social well-being is fostering personal connections and nurturing relationships that establish social networks and support systems. This is referring to your friends, your people. This is when you go on a girls' trip or when you meet someone for dinner or you have a book club. These are the ways that you feed into your social well-being.

Then there's emotional well-being which is your overall positive state of being that encompasses satisfaction, meaning and purpose. This is simply how you're doing. Are we feeling sad? Are we feeling happy, secure? What words or adjectives come to mind when someone says, "Hey, how are you doing?" That would describe your emotional well-being.

The last dimension is spiritual. This is a connection to a set of core beliefs and values that provides you with structure, boundaries and peace. Oftentimes people immediately think of religion such as the church you belong to any ongoing rituals or practices within a community that you engage in. Those are definitely the religious aspects of spirituality, but spirituality is also that inner sense of self and connection with whatever your higher power or being is.

It's so important that we establish and understand each of those seven dimensions because if we give caregivers a simple questionnaire or have a conversation, they have, overwhelmingly, experienced some negative impacts in each one of these seven areas of well-being.  

Maybe you can relate to this. Think about a time when you had a sickness in your family or some other major life event. For some of us, we don't have to think too hard, we can just say COVID and living through a pandemic.  What has happened during those times? Put yourself back in that time period when that situation was happening with you and your family. Think about if any of those seven dimensions of well-being were impacted.  You can probably remember how you felt during that time.  Think about what your stress level was and how your sense of security moved or shifted.

Now think about our caregivers operating at that level day in and day out.  The majority of our caregivers will say that either six or seven areas of well-being have been negatively impacted since they started caregiving. Granted, some of them are going to be at different intensities.  For example, their financial well-being may not have been as significantly impacted as their emotional well-being. But on some level, they have been impacted globally in their areas of well-being.

Physical Wellness Impact

Let's talk about the dimensions a little more in-depth because once we understand them, they're going to be critical to incorporate into our intervention and our treatment plans.

The first one is physical impact. This is referring to changes in your sleep pattern. If your physical well-being is impacted, you also get sick more often. One thing that we've seen with caregivers is that many of them get their symptoms treated less often than other people, whether it is because of time or lack of resources. There's also exhaustion, changes in appetite, weight, or both. There is increased use of alcohol and/or sleep medications, as well as headaches and issues with the digestive system.  Whenever your physical wellness is impacted, these are some of the symptoms that you may see.

Intellectual Wellness Impact

This shows up as difficulty concentrating and difficulty completing tasks. There's a hesitancy in trying new or challenging things, and difficulty solving daily life situations.

Social Wellness Impact

This includes withdrawal from friends and family, a loss of interest in activities, and becoming unusually impatient, irritable, or argumentative with patients and others. Think about interactions with our clients and with our patients. When the social wellness impact is high, we have to be concerned about the health and safety of our clients and our patients. Because what we see is this increase in irritability and sometimes a volatile interaction between our clients and their caregivers can occur.

The statistics show that occurs in 75% of couples, in which there is a chronic illness, and then divorce. That is an alarming statistic showing the impact of social wellness on caregivers.

Environmental Wellness Impact

This manifests as disorganization at home and work, decreased cleanliness at home and decreased time spent at home. One of my favorite things to do is come home to a clean house.  I will be walking around the house with this sense of, "I don't know what's wrong, but I just feel really good right now."  And it takes me a minute to say, "Oh yeah, my house is clean." What we see is that our caregivers have that opposite experience because of the time that they are investing in caregiving. Their mail is stacking up, they haven't been able to organize their desk, and their house is uncharacteristically messy and unclean. They don't know why, but they just have this edge to them because they're living in an environment where they don't feel secure. Sometimes they aren't even able to put words to it, it's just this underlying brewing emotion of feeling anxious because their environmental wellness has been impacted.

We also see that they spend less time out of the home. Remember, environmental wellness is not just your home, it is other areas where you interact.

Spiritual Wellness Impact

Then there is spiritual wellness and the impact of that and how it manifests.  There's a decreased faith and a feeling of abandonment by God (i.e., "God, if you were here for me, then why are you allowing me to encounter this?") There are feelings of being disconnected to their inner self. Caregivers are investing so much time, energy, and effort into the life of their loved ones that they have a feeling of being disconnected from their own inner person and who they are.

Vocational Wellness Impact

The impact on vocational wellness can include decreased performance of work responsibilities, problems interacting with co-workers, decreased job satisfaction, and financial instability. Statistics have shown that caregivers are more likely to live in poverty. There is a correlation with the amount of out-of-pocket expenses that they have to invest in their loved one, but at the same time, they're having a decrease in their ability to make wealth and money. As a result, there is this inverse relationship between decreasing income and rising expenses.

We have also seen that our caregivers are more likely to lose wages as a result of their caregiving responsibilities. Oftentimes, they have to call in to work. They have to decrease the number of hours they work or step back from a current role to a role that allows more flexibility. But that role that allows more flexibility also requires a pay cut. Caregivers definitely report a huge impact on vocational wellness.

Emotional Wellness Impact

This is “feeling blue” or cranky or hopeless or helpless. Feelings of wanting to hurt themselves or the person they are caring for, as well as depression and anxiety.  There are varying statistics in this area.  We see that depression affects 40-70% of all caregivers depending on which population and what literature you are looking at.

Think about this.  We have a person who is the caregiver, and we see that they are currently experiencing headaches, sleep disturbances, heart disease, and anxiety.  They're having their own issues with medication management.  They have dizziness and irritability.  All of this is going on with the caregiver and we are expecting them to also care for their loved one who is experiencing headaches, sleep disturbances, heart disease, anxiety, irritability, ADL impairment, fall risk, behaviors, pain, incontinence, decreased skin integrity. How can we expect the caregiver who is experiencing these symptoms to effectively manage the same symptoms and more of their loved one?

Therefore, it is incumbent upon us as medical professionals to, as aggressively as we work with our clients, make sure that we are spending that same appropriate time, energy, and effort addressing the needs of the caregivers. Oftentimes we don't feel that we have the time or the resources or if we will be reimbursed for it.  A lot of what I am going to discuss in the remainder of the course is our role, how we can incorporate it into our plan of care, and have adequate documentation and reimbursement from it.

Defining Caregiver Burnout

Caregiver burnout is a state of physical, emotional, and mental exhaustion. I want to point out the word, exhaustion. It is one thing to be tired, but what our caregivers report is that they have hit a wall and it affects their ADLs and IADLs. The best example that I can give is this.  At the beginning of their caregiving journey, when you first met the person and did your evaluation, the caregiver was hopeful, optimistic, attentive. They were writing things down in their notebook, they came to you and had an all-put-together look. But as they continued along their caregiving journey, things changed. They were late for appointments. They were a little more irritable and not as talkative as they used to be.  They were even coming in looking a little bit disheveled and unkempt. That burnout is now beginning to affect their own ADLs and IADLs.

One very important thing to know is that caregiver burnout is not an episode, it’s not a single incident that once we help them through it, it will never cycle again. That isn't the truth. Burnout is a cycle, and it is our job as part of the health care team to interrupt that cycle as often and as efficiently as possible.  The best way to do that is to give the caregivers the knowledge and the resources to do it independently. We want to know where they are in the cycle and how they can disrupt it on their own.  It is not preventable, but it can be drastically reduced or mitigated. That's where we come in as their therapeutic team.

Speech Impact

Research suggests that speech therapy has shown to decrease behavioral symptoms. As SLPs, this is the number one way that you can disrupt the cycle of burnout. I’ll get into that a little bit more later.   Additionally, speech therapy can decrease psychological symptoms, including extreme mood changes, withdrawal and exhaustion.  It also decreases caregivers’ report of distress and anger towards clients and their behaviors. For example, a caregiver comes to you and says, "Ah! Mom knows that gets on my nerves, and she does it anyway." That statement is from a lack of understanding. But you can educate them by saying, "You know what, that's a common symptom that we see with many of our clients that have this diagnosis.” So, you provide some education and what started out as a pet peeve that they took personally, you have changed how they understand and perceive that behavior. That understanding can lower their overall stress and anger toward that behavior.

Correlates for Burnout

In regards to correlates for burnout, if there are two or more behavioral symptoms, then the likelihood of burnout increases drastically. As previously stated, when SLPs partner with these families, that is how we can strategically decrease the number of behaviors or the level of those behaviors.

The second correlate that we see is level of assistance, and this is primarily physical assist. When a client gets moderate assist or more for mobility and ADLs, this is where burnout begin to creep up.

Additionally, women typically report burnout at a higher and quicker rate compared to men.  Age is another big factor with younger caregivers having a higher propensity of burnout. Meaning, if a niece, daughter, or son is caring for their mom or dad, their likelihood of burnout is higher than what it would be for a spouse. The reason for that is because as a spouse, oftentimes, there is a similar age to their own age and the person that they're caring for has an understanding and acceptance of the season of life that they're in.  But the younger the caregiver, the harder it is for them to accept their season.  Because of that, we see that there is an increased propensity of burnout.

The relationship to the client is another correlate in that the closer the relationship, (i.e., husband and wife, or son and dad) the less likelihood of burnout.  That is compared to caring for an aunt or a cousin or a friend.  The more levels that we have in the direct connection between the clients and the caregiver, the higher the propensity for burnout.

Ethnicity is the next correlate. We've seen greater reports and a higher propensity for burnout in Caucasian caregivers. Education level is another one. These two are important because they can help you identify a caregiver who may have an increased likelihood of burnout. If you look at a caregiver and they're flagging for five of these correlates, then you might want to be on alert to watch for their interactions and watch for their conversation. They are at a higher likelihood of burnout than someone that does not flag for as many of these correlates.

Burnout Measures and Assessments

Once we begin to see some behaviors or concerns, then we want to give our caregivers some assessments. I have listed four with links that you can review to see which ones you like. 

• Caregiver Self Assessment Questionnaire https://www.healthinaging.org/tools-and-tips/caregiver-self-assessment-questionnaire
• Caregiver Burden Self Assessment https://www.agingcare.com/documents/caregiver_burden_assessment.pdf
• The Center for Epidemiologic Studies Depression Scale (CES-D) https://www.chcr.brown.edu/pcoc/cesdscale.pdf
• The Zarit Burden Short Forms https://www.oncozine.com/wp-content/uploads/2018/11/ZBI-12_Form.pdf

Some of them are basic yes/no questionnaires. Others require the caregiver to check always, never, or sometimes that has a number associated with it to indicate where they are on the burnout scale.

I don’t want to spend a lot of time going over each assessment, but I do want to point out some generalities. The first thing you want to do is make sure you have established rapport with a caregiver before issuing a questionnaire or administering a burnout assessment. The types of questions asked can make a person feel vulnerable or can create some possible shame or embarrassment. Therefore, you don't want your first encounter with your caregiver to be, “Here, take this test,” or “I'm going to ask you some questions.  Have you ever considered hurting yourself or your loved one?” There needs to be some level of established rapport. Then, you want to give them a warning. And by warning, I mean, "Hey there, I’m just noticing that you seem to be having some struggles with this behavior.” Or, “I noticed that you said that you were late to work a few times. And I overheard you say that you were feeling depressed."

When we hear that from our caregivers, we like to start giving them some resources to assist them with those issues.  So, what we do is issue a preliminary assessment that helps us know what resources may benefit them the most. We can say to them, “I'm going to give you an assessment, and it asks some questions that may cause you a little bit of embarrassment. But just know that these are common emotions and common questions that we ask all of our caregivers.” Now you have warned and prepared them for what you would like to give them in regards to the assessment.  

If you have a caregiver who may be a bit standoffish or a little on edge, then you may want to give them the opportunity to take the assessment on their own.  So, instead of you issuing the questions and increasing any anxiety and distrust, you can ask them, "Do you mind taking this assessment in the next couple of days and then just give me your number? Just tell me your score. That will help me with the intervention that I think would be appropriate for your loved one and you." Saying it that way disarms them a bit and may give them the control to do the assessment without having a sense of being judged on the spot.

Some of the questions or comments on the assessments include, “I have had trouble keeping my mind on what I'm doing,” “I have felt completely overwhelmed,” “I have less time to spend for myself,” “I'm stressed between caring for my children or my other family members and the person that I'm caring for,” “I feel symptoms of depression.”

Again, I am not going to spend a lot of time going into these different assessments because I really encourage you to check them out and see which ones you like. None of them take too long to complete and that is intentional. We don't want to overwhelm caregivers with these vulnerable questions.

Each of the assessments is pretty swift to move through. When you combine the correlates previously discussed with the assessment score, that will help you to determine where the caregiver is on the spectrum.

Correlate #1 – Number of Behaviors

For the first correlate, the number of behaviors, when the client exhibits two behaviors that the caregiver has to attend to and help problem-solve, that is when we see burnout in caregivers.  This is when we want to step in and disrupt that cycle.

We can do that with the DICE Approach. The 'D' stands for Describe, 'I' is Investigate, 'C' is Create and 'E' is Evaluate. This is where we excel as occupational therapists and SLPs. We are going to approach this almost as if we are private investigators, and we're going to dig through the behaviors of this patient a little deeper than we would on a normal basis. Let’s look at each step in more detail.

Describe.  This is where we want the caregivers to give us details, and oftentimes caregivers can go on and on.  We want them to tell us the who, the what, the when, the where, because those are critical for when we move into our investigation step. We want to know if the behavior happened at a certain time of day, if it happens with all caregivers, or only with certain ones. We want as much data collection as we can.

Don't neglect the patient perspective. This is so important to remember.  Even if your client has significant language barriers or cognitive deficits, we want to get their perspective wherever we can. It could be how we observe them when they are moving around in this environment or any information they can communicate to us.   Spend the time to attempt to get the patient perspective.

Then we want to get details of the social and physical environment. When does this happen? What's the temperature when it's happening? What time of day? Is the light on?   We want to get even the smallest detail that may not seem relevant. Finally, we obtain the level of distress or effect on the caregiver. This is a very important point. For example, let’s say a client has five behaviors, and one of them irritates the caregiver, but it's not a big deal, they deal with it. We may not choose that behavior to do a deep dive right now or maybe ever. But if they say, "This behavior drives me up a wall, I cannot tolerate it, I don't know what I'm going to do." Then that's the one that we start with.

Investigate. Next, we investigate the possible causes of the behavior.  What medications are they on? We want to know the dosage, the side effects, the interactions. Are they having pain? What are their functional limitations? Where is their ADL and IADL impairment? What sensory regulations and processing issues are occurring? Is it noise, light, touch, large groups, close contact? What is happening in that environment of this behavior? Are there psychiatric comorbidities such as bipolar disorder, any kind of depression, or other issues of that nature? What is the severity of cognitive impairment? Sleep routine is very important to document. What is their emotional state? Is there a sense of fear or is it boredom? Many times, we see that the client is rummaging through the laundry room and eating the soap, not because they're hungry, but they're bored.

We also want to investigate their social and physical environments, as well as caregiver effects, expectations, and interactions.  I want to hone in on expectations. Oftentimes because of lack of education, our caregivers are expecting more from their loved ones than what they are either physically or mentally capable of.  Part of our job is to provide caregiver education that gives them the correct insight into what their loved one's potential and current state of function are.

Create. Next, we get to create. This is where we've taken all that data from describing an investigation, and we make a plan. We collaborate with the entire medical team which includes the caregiver and the patient.  We make sure that across the entire medical team, everyone has the understanding and the buy-in of the plan we create. If you create this master plan that the caregiver looks at and says, "I ain't doing that," then your work was in vain.  So, you want to make sure that everyone understands and agrees with the plan you create.

You want to make a strategy for the interventions:

• Caregiver education and support are part of the plan that you create.
• Enhancing communication with the patient.
• Creating meaningful activities for the patient is critical. If we can identify activities that the client can participate in that are level-appropriate, then those can decrease behaviors, increase their safety, and increase their stimulation.   
• Simplifying task. Maybe we're not adding a task, maybe we are making it easier for either the caregiver or the client to accomplish. What if the caregiver says, "I just need mom to get dressed.” We see that they're still trying to dress Mom in her stockings and buttoned-down shirts and the caregiver does that because Mom loves it. That's what she used to like to wear. Well, Mom is different now. What if we try easier clothing to don? Then through that problem-solving and creation of a plan to change Mom's attire into something simple to wear, and giving the caregiver that suggestion, now, suddenly Mom is getting dressed again.
• Creating safety assessments and plans.
• Increasing or decreasing stimulation in the environment.  Looking at the sensory processing and regulation deficits of our clients, and how we can teach our caregivers to modify that as appropriate for their loved ones.

Evaluate. The last step is to evaluate to see if our interventions worked. Which ones worked, which ones did not. Then we repeat the cycle as often as we need to.

Doing a deep DICE approach has proven to lower, not only the number of behaviors but also the level. And, this gives our caregivers hope. When they see even slight progress in a particular behavior area, it gives them a second win. It gives them encouragement and the feeling that they can act on behalf of themselves and their loved ones, in a way that improves their quality of life.

Correlate #2 – Level of Assist

The next correlate is level of assist and the first thing to consider is ADL retraining and IADLs.  As an OT, this is where we live and thrive. This is what we do. SLPs also have an important role in addressing ADL impairments. Let me give you a quick example. When I work with a PT on a client who is having mobility issues, oftentimes we can work on the same manifestation of the deficit. If they're having problems with mobility and walking, the PT may document and work on specific gait patterns. They may document and address lower extremity strengthening and weakness, and pinpoint the exact muscles. So, yes, they are working on the mobility issues. But as an OT, I'm going to look at general endurance and dynamic balance during functional tasks. So, although we seem to have some overlap, there isn't truly a duplication of services.  We are identifying a functional area, but a different deficit that's causing the impairment in that functional area.

It's the same thing with OTs and SLPs as we address ADL retraining. Let's take lower extremity dressing, for example. As the OT, I may be working on the balance deficit that's impeding that functional area. I may be working on the fine or gross motor tasks that are impeding that functional area of lower extremity dressing. But as a speech therapist, you may be working on the sequencing that's impeding that functional area. It’s the same functional area but a different deficit.   Maybe for that lower extremity dressing, as the SLP, you want to work on task initiation and termination, or ability to follow verbal commands. You too, as the SLP, can have a very specific and critical role when it comes to improving the ADL and the IADL status of our clients.  That directly lowers the propensity and the rates of caregiver burnout.

Honestly, all it takes is a conversation. I know sometimes you may run across a territorial OT, and if she sees you working on putting on pants with a client, she might ask, "What are you doing?" But just have those conversations and let them know that you're addressing different components of the task. Then, make sure that as all of you are documenting, it is clear for reimbursement purposes that you are working on different elements of that task.

Medication management is also so important. We want to make sure that our clients have a consistent, timely regimen of taking their medications. Oftentimes there is an issue with behaviors and cognitive impairment. Loved one struggle with issuing medication. Using the DICE method, figure out how to make it easier for the client to take their medications. Is it a swallowing issue? Of course, that's where you, as an SLP, excel. But maybe it is the pill is too large, or they don't like the taste of it. Can you do the DICE method, figure that information out, and pinpoint something? It might be as simple as they are more alert in the morning or more agreeable in the morning.  You can see that they have to take this big, horse-sized pill so maybe suggest to the medical team, to the nurse, the doctor, to move this large pill up to the morning, because they're more coordinated, they're more alert, and they have less aggravation. That investigation and communication with the other parts of the medical team could solve that one behavior.

Other ST Intervention Areas

Another area of ST intervention is administering the stress level assessment.  You're not going to necessarily treat the stress, that's not necessarily within your scope of practice.  But you can make appropriate referrals to counselors, social workers, or psychologists.

SLPs can also provide consistent caregiver education, including a basic understanding of the nature of the disease and whether it's dementia or another issue if you're working with a pediatric population, for example. Whatever the issue is, we're going to assess the level of understanding of the disorder with the caregiver. Once we check their understanding, then we can structure our education depending on their level of understanding.

Here is a startling statistic.  Forty-seven percent of caregivers feel they have not received adequate training to perform major caregiving tasks. The facilities are ready to discharge and caregivers are looking at us and thinking, "I don't know how to do this." Even tasks like transfer training, wound care, and things of that nature. I realize that is not your area, but that is a shocking number of caregivers who feel under-prepared at discharge.  

Therefore, we must make sure that we start the education process immediately. We want to invite our caregivers to the sessions if appropriate. If we don't want them in the session, because they are disruptive or our client focuses on them or doesn't perform as well, then we want to schedule times when they come at the last 15 minutes or the first 15 minutes of a session. Throughout our intervention, we want to consistently and regularly include our caregivers in the training.

We know that some caregivers don’t come or they work late.  If that is the case, try to figure out what will work. Maybe it’s once a week or once a month. Maybe instead of coming in at 8:00 to work on feeding for breakfast, structure your schedule to come in later and work through dinner. That way, you can catch a few more caregivers and do some more caregiver education.  We want to try and be flexible whenever possible to reach as many caregivers as we can, to make sure that we're not stuffing all of this crucial important education into the last week of our therapy sessions.

We also need to look at maintenance programs which are so important. Occupational therapists do maintenance programs on upper extremity strengths or balance, and things of that nature, but what about ST maintenance programs?  It could be as simple as saying to the caregiver, “I would like for your loved one to be out in the community twice a week because we have worked so hard, and he/she has made so many gains in increasing his/her appropriate social interaction.

Going back to what we know, we see that caregivers leave the house less and less. What often happens is we've made great progress on social interactions within therapy while the caregivers are coming to groups or to the clinic, but then the caregiver goes back into this hermit-like living. Then, when they do go into the community for a doctor's appointment or errand and they try to take their mom or their son, they see these behaviors occurring again. As part of that maintenance program, we need to educate them that their loved one needs to have a consistent and regular pattern of practicing sensory regulation. We can say to them, “If you only get them out of the house once a week for 30 minutes or once a month for a doctor's appointment, then you're going to see those behaviors pick back up. As part of a maintenance program, I would like for you to plan to get out of the house twice a week. I would like for your loved one to get dressed every day. And I know you don't have appointments every day, but you did tell me that one of the main behaviors that you were having an issue with was your mom having trouble fighting you getting dressed. But now we've made great gains, and she is getting dressed with less and less aggressiveness. What we believe will happen is that if you allow your mom to walk around in her gown and her shoes for days upon days, then the one day that you need her to expeditiously get dressed, it's not going to happen. She's out of that rhythm and out of that practice. So as part of your maintenance program, I want your mom to get dressed at least five to seven days."

Then there are environmental modifications. This is, again, where OT, PT, and ST can work as a group to determine the safest and most efficient environment for our clients to operate in. This may be something structural or it could be the lighting, for example. It might be the way the bed is turned, or is the television on or off, or the volume? All of these are ways to incorporate ST interventions into our plan of care and our client and caregiver education.

Caregiver Education Continued

Caregivers have differing needs of education at different stages. For example, at the acute stage, they need to know what is 'X'? What is this term? What am I dealing with? I need specific information about the disease.

But as we move further into outpatient or the rehab stages, they need emotional support. We need to give them education on what are realistic outcomes and expectations. Help them move into areas of acceptance.

Then we need to equip them with resources. What your patient education looks like in the beginning will be different from what you're educating on in the middle, and definitely different than what we're educating on at the end of care.

We need to recognize changing support systems and support needs. What they needed in the way of support in the beginning, may be a totally different support system or support need than what they need now.

We want to assess what they know as a caregiver and then strategically fill in the gaps of education. Use less medical jargon so that they can understand and not feel talked down to. Oftentimes, they are not going to ask clarifying questions. They will say, "Yes, yes. I got it." They may even take notes just to appear that they understand. It’s not because they don't care, but they feel overwhelmed. They are regularly interfacing with people in the medical field who know more than them in this particular area. It becomes overwhelming and they don't ask clarifying questions. So, be sure to frame the conversation in simple terms that they can understand.   

Ask them to repeat and recap what they have heard you say. I don’t typically ask if they have any questions because, often, they feel intimidated and may say, “No.” Instead, I say, "I'm sure you have questions, clients always do. Why don’t you give me about two questions." So, now, I'm welcoming questions and I am letting them know that I want them to ask those questions. It completely changes the interaction. More often than not, they're going to ask you a question when you pose it in that manner.

Link Patients and Caregivers with Community Resources

The first community resource is respite. About 85% of family caregivers in the United States do not receive any respite care. That is alarming.  Whether it be an overnight, four hours, a weekend, or a week through our own investigation or partnering with a social worker, we need to figure out what programs are available for respite care for our caregivers and their family.

Veterans' services is a very important resource. For low to no cost, veterans can be admitted to the hospital for a short respite stay.

Adult day services are not utilized often because of the cost. On average, adult daycares are $70 or more per day. Depending on the financial status of a client, or if they have long-term healthcare insurance, oftentimes they can't afford it. But we can help them problem-solve, “Can you afford adult day services twice a month? Will that help you? What could you get accomplished with two full days a month?” The caregiver might not be able to take them every day, but can they structure their finances so that they could do two days?

There are also grants available through several different organizations, including the Area Agency on Aging. They often provide grants for adult day services. Give your caregivers information on that particular agency, senior centers, Alzheimer's associations and other funding options. These services fall more on our geriatric population, but there is also Medicaid or other grant programs that give assistance to clients with other physical impairments or even to pediatrics. You can collaborate with your social worker and find out what programs are available that would be most effective for your caregiver or your client.

How to Make it Billable

The big question is how to make this billable. Let’s look at the billing codes.  CPT Code 92507, treatment of speech, language, voice, communication, and/or auditory processing disorder, could be used as an attempt to increase the client's level of communication and you work with their caregiver on this particular aspect. Of course, your clients need to be present when working with the caregiver, but that is how to link what your're doing.   Link your education to the caregiver and to the specific need of your client. All the while, have your client present for that interaction.

CPT Code 97129 is used for therapeutic interventions that focus on cognitive function. Earlier I mentioned if you want to work on lower extremity dressing and you see that the caregiver is experiencing high levels of anxiety and stress getting their mom dressed.  A lot of it is not because of decreased functional capacity, it's because she's fighting her daughter when she’s getting her dressed. In that instance, we can put the caregiver training under this code because we're looking at reasoning and problem-solving.

CPT Code 97533 is for sensory integrative techniques. When we talked about looking at the environment and how can we change the room, the noise, whatever is causing the problem with sensory regulation to cause those behaviors, then that DICE approach could be built under code 97533.

CPT Codes 99366 and 99368 are for collaboration and as we collaborate with social work, for example, we need to bill and capture that time. One thing to keep in mind is there needs to be a minimum of three healthcare professionals from different specialties or disciplines who provide direct care to that same patient. So, you can't have two other STs and count that as three medical professionals. It has to be another professional involved in the care plan for that particular patient. No more than one individual from the same specialty may report the 99366 or 99368.

Also, reporting participants must be present for the entire conference. You can't report your information, leave the meeting, and then bill this code. Reporting participants shall have performed face-to-face evaluations or treatments of the patient in question, in order to bill those codes.

A few more ways to bill caregiver training is with CPT Code 98966, telephone assessments and management of service.  For example, if you need to talk with the patient, parent, guardian, or caregiver this is the code you would use to bill some of that time.

Sample Goals

Let’s look at some sample goals.

• Goal 1: Caregivers will be able to describe signs that resident has unmet physical needs (hunger, bathroom, pants too tight, etc.) with MI, using written guide as needed.

We have specific interventions with the client, we're measuring it based on what the caregiver will be able to demonstrate or say, but we're still directly working with the client. That's how this goal is appropriate.

• Goal 2: Caregivers will be able to describe at least 3 specific strategies to meet resident needs at her cognitive ability level with MI, using written guide as needed.
• Goal 3: Caregivers will use identified cues to support resident adherence to safety precautions 80% of the time with post-training and implementation of a striking visual cue.
• Goal 4: Caregivers will demonstrate ability to set up environment (bed positioned at lowest level, commonly used items in reach and visible) 100% of the time post-training to reduce pt risk of falls.

As a single site rehab manager, a strategic challenge that I had was making sure that our facility’s SLPs consistently kept a caseload. I'm sure many of you have had the same struggle where you had to float to a different building or you had fewer hours than your OT and PT counterparts. Oftentimes, it's a bit more challenging to pick up a client for speech services or to keep them on for as long.  So, these sample goals, intervention areas, and ways to make it billable can certainly help if you are struggling with that.

• Goal 5: With implementation of a striking cue, resident will orient to the bathroom with contact guard assistance, and no instances of urinating in inappropriate locations over a two-week period.

This is a goal that speaks directly to the client’s behaviors. You can take this goal and input the behavior that the caregiver is experiencing.

• Goal 6: With use of environmental modification, caregiver training, or space retrieval, resident will wash hands thoroughly using the bathroom at least 50% of the time.

This may sound like more of an OT goal, but this is appropriate as a speech goal because we're working on safe completion of ADLs, decreasing behaviors, and ultimately improving the quality of life and function of this client.

• Goal 7: Post-implementation of a visual reminder, resident will demonstrate ability to follow three fall prevention strategies related to her environment (such as clutter picked up off the floor) with supervision 80% of the time.
• Goal 8: After bathroom has been labeled and using striking recognizable visual cues, resident will distinguish bathroom from other rooms in home and urinate in the correct room 100% of the time.

You are assessing your client and saying with her level of cognitive impairment she responds well to visual cues. So, you transfer that to how this can improve her ADL performance.

• Goal 9:  Client will follow two step verbal commands when delivered by a familiar communication partner within three out of four opportunities.
• Goal 10: Client will engage in 15 minutes of familiar structured activity with no redirection prompts with 90% independence.

All of these examples are very solid, structured goals that you can use as a template to plug in your specific client needs and assessment. These can be altered to fit your client as best as you can.

Tips and Tidbits

I like to explain the concept of sinkers and swimmers to my clients. I have so many caregivers who feel that all is lost (e.g., “I don't care what you try to tell me, it’s not going to work.”) For every suggestion that I have, they have 25 and a half reasons why it won't work.  I'm sure some of you can think of someone just like that.

So, I have adapted and educate my clients on sinkers and swimmers. I tell them that as a caregiver, I have never met one that just floats. It's not easy. You can't just turn it on autopilot and go. That’s not possible when you're caregiving. But I have met hundreds of people at different extremes. So, you can either choose to sink or swim. When you sink, you will stay constantly overwhelmed. There will be no right answer, there will be no easy day. Nothing will work, nothing will ever get better. So you're right, if you don't choose to strategically intervene on your mom's or your son's behaviors, you're going to have an overwhelming feeling of always sinking, as an individual and as a family.

But you can choose to swim. Swimming takes energy, it can be tiring, and it takes effort and practice.  But as an occupational therapist (and this is me talking to my caregiver) with 20 years of experience, I have seen caregivers who, though it can be tiring, have found success in implementing certain strategies that have helped them not be overwhelmed at such consistent levels. If you will allow me, I can help you. I can’t help you with everything and I am never going to say that I can make it easy. But I can make it manageable.

That is the conversation I have with my caregivers who need it. Then I teach them to embrace that there are “no unsolvable problems.” Again, it goes back to this negative thought that nothing is going to work.  I try to get them to see that we might not be able to erase the behavior, but what if I take the frequency of this behavior down from seven days a week to three days a week? Would that help?  So, we haven't fixed it, but we have done something that has changed the quality of life and their experience of caregiving.

Then we teach caregivers to follow schedules. They don’t have to be rigid or inflexible.  But, for the benefit of our client and for the caregiver, we need to stress schedules that you have on a daily and weekly basis. Give them some sense of what needs to happen because it keeps them from feeling always behind and always exhausted. It helps them to operate in a routine. Many of our clients with any kind of cognitive impairment respond and follow better if they have a routine and a schedule.

Then, we teach caregivers about systems.  If a schedule tells you the time to do something, a system tells you how to do that thing. Here is an example. Let's say the schedule component is that Mom has a doctor's appointment at 2:00 p.m. on Wednesday the 6^th. That's a schedule. But the system says, "I never schedule mom's doctor's appointment before noon because I know she's a late sleeper. And if I agree to try to get her to an appointment at 9:00 a.m. way across town to her particular specialist, it is going to be a nightmare." So, the system that I adopted says, “I don't make her an appointment before 12:00 PM. Systems and schedules go hand in hand, and we teach our clients and caregivers to adhere and create both of them. They don't always flow flawlessly, but they do help.

We encourage responding versus reacting. We are encouraging our caregivers to be prepared, to be forward-thinking, to be more planful because that allows them to respond to issues as they come and not have knee-jerk reactions. If the caregiver is responding quickly and nervously then that's going to not only increase their feelings of burnout but also increase the behaviors and the non-compliance of their loved one, which puts them on that cycle.

Then, we encourage them to get assistance from family and friends. We want them to increase and maintain their social connectedness, not only for their own social wellbeing but for establishing and maintaining support systems. We also want to encourage support groups.

Finally, we view our caregivers as our secondary clients. Many times, they are as important to incorporate into our intervention as the client. We can do this amazing work with our clients, but if there is no carryover, how beneficial was all the work?

Self-Care is Survival

We also teach caregivers about self-care because, in the midst of caregiving, self-care is survival. By looking at the assessment that we gave them, as well as listening and observing their interactions as a caregiver, they can pinpoint where their greatest area of need is.  Where is their well-being "off" the most and how can we help them problem-solve some of that?

Physical

If they are complaining of decreased sleep, if they're not walking, if they're having problems with their nutrition, we can discuss that with them. How do we do that and make it billable? We incorporate the needs of the client. As you are working on swallowing issues and telling them the texture of the food that their loved one needs, go ahead and transition into some discussion about diet and nutrition that will help and benefit the caregiver. If we're talking about sleep patterns that are affecting our client, we're educating the caregiver on keeping schedules, and trying not to allow their loved one to take extended naps during the day because that's why it's affecting them at night.  So, as we're educating the caregiver about the client, we can also segue into some education that directly impacts the caregiver.

Emotional

This includes stress management, coping skills, therapy for themselves, journaling. We encourage all of these techniques to increase the caregiver’s emotional wellness, and we encourage them.

Social

Social self-care goes back to creating boundaries. Oftentimes those boundaries are going to be with our client. We need to tell the caregiver, "You can say "no". I know that you feel that saying “yes” all the time is decreasing behaviors. But what it is actually doing is increasing the level of a behavior if you ever give them a boundary."

A lot of times our clients can be kind of demanding and bossy. That can really stress the caregiver out. How can we, as SLPs, work on teaching the caregiver to establish appropriate boundaries with their caregiver?

Establish support systems, communication, and positive social media. Social media is a big one. Oftentimes, our caregivers kind of veg out. At the end of the day, they sit and scroll through their social media or watch television. We want to ask them, "What are you feeding your mind, especially at bedtime? If you are reading articles about the state of the country and the number of COVID cases, and then you're watching an episode of "Snapped" or "CSI" at night, that's going to affect how well you sleep."

So, we want to work with them on all these little tidbits to increase their level of self-care.

Spiritual

Spiritual self-care can be spending time alone.  We really want to stress to caregivers that they need some time to themselves. How can we structure that? Ask them, “How can I help you get some time to yourself?” How is this billable? We can say, we're going to find at least two activities that the client can sit and do with minimal to no redirection for 20 or 30 minutes. So, we've given the caregiver two blocks of time that they can go and feed their spiritual self.  Meditation, prayer, nature, and a sacred space are also important to spiritual self-care.

Intellectual

Hobbies, creativity, reading, podcasts, and establishing goals are part of intellectual self-care.

Environmental

As we work with our client on having a safe space to operate, doing structural modifications, and decreasing environmental stim, we can also incorporate our caregivers into this conversation. Caregivers also need a clean space therefore we need to encourage them to hire someone to help them with cleaning and organization.  Be intentional about enhancing the “feel” of their home and the security that they need.

Vocational

Again, creating schedules helps them so that they won't be late for work or late for appointments to therapy. We can help them with successful time management. We can have conversations with their superiors or peers. The statistics suggest that men more than women have problems with their bosses and supervisors when they need time away or some restructuring of their work schedule.   I think it's because historically we see women as being caregivers and oftentimes the workplace isn't as supportive of male caregivers. But whether male or female, we work with our caregivers on having crucial conversations with their employers. Letting them know their current state and the resources that they need, and any time that they may need a way.

We can give them resources on short-term disability, for example. Does that apply to them? We can set them up with a social worker to see what financial assistance programs are available.

Then, we also work with them on other possibilities and give them options. There may not be a perfect answer, but we can help them problem-solve. For example, can you change positions? Can you change shifts that you work? Is there a different role within the same company that you can take that will allow for greater flexibility? We help them work through that process.

We teach them that self-care is survival, and you can't pour from an empty cup. They have to fill themselves first. We encourage them to attend to their own levels of physical, emotional, all those areas of wellness in order to be better caregivers.

Advocate for ST

Finally, we have to advocate. You have to be your own advocate for services.  I'm sure you hear it all the time. "I just want Mom to walk. Mom just needs to walk." But you're looking at Mom, and she is climbing the rails of her bed. And you're saying to yourself, "You don't want your mom to walk right now, trust me." So, what you have to do - you don't say that - but you find a gentler way to say, "As an SLP, one of the things that I do is directly work with trying to find ways to decrease the behaviors of your mom (or your child). I can give you resources that will make it a little bit easier so that when your mom is able to walk, you're able to successfully go to the grocery store without having to worry about her safety or decreasing the likelihood of an outburst in public."

Advocate for yourself with the client, with the caregiver, and also with insurance companies. Be able to go back to those goals and clearly articulate your role as a speech therapist.  You can advocate for yourself through your goals and through your documentation.

Advocate for your patient, ultimately, but advocate for yourself as a necessary discipline. Oftentimes, caregivers don't prioritize ST because of the cost of services. If they have any out-of-pocket expenses, they want to put it towards PT most of the time for walking. But, if you can explain your role and the benefits of what your services would do, then you would increase your buy-in from the caregiver wanting those services.

Transportation is often an issue when our client lives in the community. What can you do to help the caregiver problem-solve when it comes to transportation needs? Remember there are city, state, or federal benefits that pay for therapy services. Make sure that you stay tapped into those channels by keeping up with those yourself or setting your client up with a social worker or another care management team that can help them with that. There are also agencies that pay for ordering and fitting of devices or other short-term ST care. So be sure to look into those as well.

Questions and Answers

How you are defining behaviors?

Behaviors can be all across the board. Behaviors are anything that are disruptive to the client's ADLs or IADLs. So whatever that falls under, it could be a verbal outburst, it could be aggression, it could be urinating in the incorrect place, or maybe social isolation in times when they should be integrated into the group. So, a behavior is anything that disrupts the ADL or IADL performance of that particular client.

Can you provide an example of successful responding versus reacting?

Let’s take the previous question about behaviors. Let’s say we know that, as a behavior, our loved one has a tendency to eat other people's food in public. If we're at a family function and our loved one reaches for someone else's food and takes it off of their plate, now the caregiver is embarrassed and they're ready to go home. If they are thinking, “I'm never leaving with Bobby again,” that's reacting. But responding is if we see Bobby getting ready to reach for someone else's plate, we have in our bag, a treat bag, and we say, "Oh no, Bobby, remember these are your snacks and whenever you're hungry, you can go in your treat bag." Now, because I am planful and forward-thinking, I've mitigated that behavior. That's an example of responding versus reacting.

It seems like it would take a lot of communication and working with the caregivers, getting them to know when to share what situations might lend themselves to these situations of, “How do I learn to respond versus react?” So, again, it's such a group effort, and therapy involves the caregivers so much more than just working with the client themselves.

For sure. It has to spill over outside of the clinic. We have to incorporate all parts of the medical team, and definitely the caregivers into that. And we never try to paint ourselves as, “We're going to solve all your problems. Bobby will never embarrass you in public again.” We don't say that, but we can say that we can help. If we decrease these outbursts from every time you're in public to maybe now they're rare, then it's worth it to attempt these strategies.

So, it's kind of like pre-planning for what might happen?

Exactly. Again, you don't have a crystal ball.  But you do know your loved one, and you know their tendencies. You know the things that typically set them off or increase their behaviors. And I'm strictly talking about behaviors. However, if it's something like you know what mom or dad’s typical bowel and bladder patterns are, then you’re not going to plan a trip to the grocery store during that time.  That's responding versus reacting. If you take Dad to the store and he has a bowel accident, then you're flustered, you're embarrassed, and you're rushing home. But if you're responding then you are saying, "Hmm, it's not the time to take him." Or, "I have something in the car, so if there was an accident, I would be ready." Those are the kinds of things that you’re trying to be forward-thinking on.

I know that anything on paper looks easy. But we all know as clinicians, a lot of what we do is trial and error, and some things work and some don't. And I think that's what we tell our caregivers too, that I'm going to give you 20 tricks, and you may only use two or three, and that's fine. But if those two or three help, then it was worth it.

What works for one person and one family does not necessarily mean it's going to work for another family. So, of course it's trial and error and it's important to share that with caregivers as well so that they know it's okay if it doesn't work the first time or at all. You have to figure out what works best for you, and it takes time.

Any tips for handling COVID right now where many people are socially isolated?

I think that depends on where you live. But for those clients, especially those who have compromised health, a lot of them are still in and at home. So, what I've been working on with my clients is not really that different in the strategy that we did before COVID. Because we're still asking, “How can you create an environment that is conducive to the health and function of your loved one?  Even before COVID, for most of our clients, we weren't encouraging being in large groups. We were trying to encourage low stim environment or going when there weren't a lot of people, so they could easily navigate the wheelchair, for example. So, a lot of those same suggestions are what we should offer to our clients now. Where can you get your loved one where the crowds are low? Is that strategically looking at the time of day when you take your loved one out, is that looking at a particular place that regularly doesn't have large crowds. Look at opportunities, places, and times to take your loved ones where the crowds are low and allow for the best amount of social distancing.

References

Hiyoshi-Taniguchi, K. & Becker, C.B. (2018). What behavioral and psychological symptoms of dementia affect caregiver burnout? Taylor and Francis Online

LMR, Otero. (2016). Burnout Syndrome in Family Caregivers. International Journal of Asian Social Science

Yildizhan, E.,  Oren, A., & Erdogan, B. (2019). The burden of care and burnout in individuals caring for pts with Alzheimers. Community Mental Health Journal

Leocadie M.C., & Roy, M.H. (2018). Barriers and enablers in the use of respite interventions by caregivers of people with dementia.  Archives of Public Health

Spann, A., Vicente, J., Allard, C., & Hawley, M. (2020). Challenges of combining work and unpaid care and solutions. Health and Social Care in the Community.

Lange, M., & Minkle, J. (2018). Seating and Wheeled Mobility: A Clinical Resource Guide. Slack Publishing.

Occupational Therapy Practice Framework: Domain and Process – 4^th Edition. 2020. American Journal of  Occupational Therapy, 74.