Introduction
Jennifer: Thank you. A couple of things that I want to mention before we go through the presentation. You will hear me say the term staff or caregivers. I sort of use those terms interchangeably. Sometimes, I am talking about caregivers like paid caregivers, family or friends that are serving as caregivers for dementia patients, or staff in a facility. The other terms that you will hear me use is patient, client or resident. And again, I sometimes use those terms interchangeably just depending on the setting. My primary practice is in skilled nursing facilities so a lot of times I use the term resident, while in other settings, you might use the term patient or client. I just wanted to make sure that everyone understood that before I start.
Impact of Dementia
First, I want to talk about the impact of dementia as this grounds this topic and explains why it is so important. Here are some statistics.
- An estimated 5.7 million Americans have dementia; may increase to 14 million by 2050 (Alzheimer’s Association, 2018).
- Alzheimer’s disease is the 6th leading cause of death in the U.S. (Alzheimer’s Association, 2018).
- 49% of those who care for people with dementia report declines in their own health, as compared to 35% of caregivers who care for those without dementia (Alzheimer’s Association, 2018).
- 50.4% of nursing home residents have some form of dementia (CDC, 2016).
An estimated 5.7 million Americans have dementia, and that number is expected to increase. The estimate is upwards of 14 million by 2050. Alzheimer's disease is the 6th leading cause of death in the United States. And, 49% of those who care for people with dementia report declines in their own health as compared to 35% of caregivers who care for those without dementia. This includes family members as well. It is estimated that a little over 50% of nursing home residents have some form of dementia.
- One of the most common symptoms is mood & behavior changes (agitation, lethargy, wandering, etc.).
- Cost of managing the disease in 2018 is ~ $277 billion per year, with an increase to 1.1 trillion projected by 2050 (Alzheimer’s Association, 2018).
- Typical management includes restraints, medications, behavior modification techniques.
- Lack of awareness of the role of the sensory system in dementia patients.
One of the most common symptoms of dementia are mood and behavior changes, and this can be at both ends of the spectrum. On one end, you may see agitation, aggression, and acting out, and then the other end, there may be lethargy, wandering, a flat affect, and decreased engagement. Both can be problematic, and it is estimated that it costs 277 billion per year to manage this disease. And as I said, this is expected to increase as the population increases. They estimate up to about 1.1 trillion by 2050. Some of the common ways that these behaviors are managed are with the use of restraints, medication, and behavior modification techniques. There seems to be a lack of awareness of the role of the sensory system in dementia patients. This is what I am hoping to help you to understand today so that you can address the behaviors from that angle.
Dunn's Model of Sensory Processing (1997)
Briefly, I want to mention Winnie Dunn's model of sensory processing and her book called "Living Sensationally: Understanding Your Senses." This is not a book for OTs or for healthcare professionals, but rather it is for the general public. It is written in layman's terms, and it describes the sensory types that I am going to talk about. If you need more information or if you are trying to talk to family or caregivers, this might be a great resource for you to use.
- Neurological Thresholds
- High threshold (more input necessary to notice)
- Low threshold (less input necessary to notice)
- Self-regulation
- Passive (just let input happen & reacts later)
- Active (actively try to control quantity & type of input)
- Remember that both neurological thresholds & self-regulation are on a continuum.
Whenever we think about sensory processing, there are two things that we must consider. The first is the neurological threshold and how that relates to how much sensory input you need in order to notice what is happening around you. At one end of the spectrum is a very high threshold. You would need a lot of input in order to be able to notice what is happening, and then at the other end, it is a very low threshold where you would need much less input. You would be able to notice things in the environment with little input.
The other factor that we need to consider is self-regulation. You react to that input passively or actively. If you are reacting passively, you are going to let things happen and then react later. Active self-regulation is where you try to control the quantity and type of input that you are receiving.
And, it should be noted that for both neurological thresholds and self-regulation, those operate on a continuum. Everyone can fall somewhere along that continuum. We might not always be passive or active. For example, you can have a high threshold and respond passively or actively or have a low threshold and respond passively or actively. This results in the four sensory types that she describes in that model and in the text that I recommended.
Behavioral Symptoms in Dementia
If we think about that information related to symptoms of dementia and what you might expect to see, these are generalities.
- If not enough stimulation: (higher thresholds)
- Passively managing: Could appear lethargic, fatigued, increased duration of sleep, less engagement in functional activities
- Actively managing: Repetitive behaviors, rocking, wandering, touching everything & everyone, preference for conversation, music, lots of activity
- If too much stimulation: (lower thresholds)
- Passively managing: Could appear overwhelmed, picky eaters, easily distracted, vocal about dislikes
- Actively managing: Wandering or exiting seeking (to get away from stimuli), refusals of care, stubborn, can become aggressive if overwhelmed, content to be alone
This is not what you see in every situation, but this is showing you the context within the model. If there is not enough stimulation, meaning higher thresholds, and you are passively managing that, the client could appear lethargic, fatigued, sleeping more of the time, and showing less engagement in functional activities. If they are in that higher threshold and they are actively managing, you may see things like repetitive behaviors, rocking, wandering, going into other people's rooms, and touching everything and everyone. They also usually have a preference for conversation, a lot of activity around them, music, and maybe the TV turned up very loud.
If there is too much stimulation, that would be in the lower threshold. If they are passively managing, they might appear overwhelmed, picky eaters, easily distracted, and they might be really vocal about things that they dislike because they are trying to let you know how they feel about the sensory input. For actively managing, you might see things like wandering or exit seeking. They are trying to get away from whatever is irritating them. They might refuse care, seem stubborn, and get aggressive if they become overwhelmed.
What is a Multisensory Environment (MSE)?
- Common terms:
- MSE (multi-sensory environments)
- Snoezelen: the Netherlands in the 1970s; comes from Dutch words for “sniffing” and “dozing”.
- SI
In this presentation, I use the term multisensory environment or MSE. If you are looking in the literature, you can see the term multisensory environment which really refers to a whole room of sensory items. Some people call them sensory rooms. You might also hear the term Snoezelen. That term comes from the Netherlands in the 1970s. It is the combination of Dutch words for sniffing and dozing. Lastly, you might hear sensory integration. This is more of an approach not necessarily a room, but some people still use that terminology. A multisensory environment is an all-inclusive room where there are a variety of sensory mediums. The other thing that I want to mention is that there are a number of photos throughout this presentation that is taken from a multisensory environment that I developed. Here are some definitions, some quotes that I like that really drive home the point about what this environment is.
- “Multisensory stimulation incorporates the use of tactile, visual, auditory, olfactory, and gustatory sensory pathways, along with movement, to help the individual interpret his or her environment” (Lape, 2009).
- The goal is to “stimulate the primary senses without the need for intellectual activity in an atmosphere of trust and relaxation. It is a failure free approach as there is no pressure to achieve” (Burns, Cox, & Plat, 2000, p. 120).
Multisensory stimulation incorporates the use of tactile, visual, auditory, olfactory and gustatory sensory pathways along with movement to help the individual interpret his or her environment. This comes from an article that I authored earlier on the topic (Lape, 2009). The goal is to stimulate the primary senses without the need for intellectual activity in an atmosphere of trust and relaxation. It is a failure free approach in that there is no pressure to achieve (Burns, Cox, & Plat, 2000). Think about that for a minute. This is really different than what typically we do as OT practitioners. We collaborate with the client, client's family, or caregivers to determine a plan of care and a course of action. We are one of the big driving forces of that. This approach is a lot different. This is letting the client lead by what they need or what they want. It is a different way of thinking about occupational therapy intervention.
Research and MSE
I also wanted to touch briefly on what the research says about MSE. There are a number of articles in the reference list.
- Decrease negative behaviors, anxiety, & pain
- Increase positive behaviors
- Increase spontaneity, intelligible speech, & recall
- Increase attention & concentration
- Decrease wandering, boredom, & lethargy
- Be as effective or more effective than alternatives (medication, relaxation, reminiscence, activities, etc.)
- Can improve client-caregiver relationships
**See reference list for full citations.
There was a time when there was limited research on this topic, but it has definitely increased in recent years. I suspect that this is due to the rising dementia population and initiatives related to managing behaviors. Research says that using this approach can help decrease negative behaviors. These are things like agitation, aggression, lashing out, yelling, hitting caregivers, and things like that. It can also decrease anxiety and pain. A number of those studies I included focused on dementia patients, but there are also studies with other populations. One study focused on the pain in cancer patients. Research also says that using this approach can increase positive behaviors like increased spontaneity, intelligible speech and recall, better attention and concentration, and more engagement in functional tasks. This approach has been found to decrease wandering, boredom, and lethargy.
A number of studies also compared the use of a multisensory environment to other alternatives like medication, relaxation techniques, reminiscence therapy, and activities like playing games or doing crafts. In all of those studies, the use of the multisensory environment was shown to be as effective as the alternative or even more so. And, there were no studies that I found where the use of a MSE was shown to be less effective.
Finally, there were a number of studies that showed that this can improve client and caregiver relationships. It could be family or hired caregivers. Some studies specifically looked to see if the client and the caregivers were getting along, had positive thoughts about each other, and things of that nature. There was definitely a positive impact.
Research Also Supports
Here is some other information from the research.
- Session Length 30-45 minutes 3x/week
- Staff behaviors often the cause of resident behaviors
- Impact of one-to-one sensory experiences
- Positive impact on staff; shift from task-oriented to resident-oriented care
- Positive impact on families & caregivers, other healthcare professionals, & administration
If you are taking someone into an environment like this, how long would they typically be in there? Looking at the research, there is definitely a range. The average is about 30 to 45 minutes, about three times a week.
Something else that was prevalent is that staff or caregiver behaviors can often be the cause of these clients acting out. I thought that was pretty important to mention. I work in a facility and had a client that was perseverating on when her mother was coming. "My mother does not know where I am. I'm worried." The patient was 92, and her mother had definitely passed on. I observed the nurse tell her repeatedly, "Your mother isn't coming. Your mother is dead." This caused the patient to yell louder and argue that her mother was not dead. I approached the nurse to explain that this might not be the best approach. Her response was that she did not want to lie to her. This is just one example. Sometimes the facial expressions or the attitude that you are conveying can cause a behavior.
The research also supports the impact of the one on one sensory experiences. Typically, when you are taking someone into this environment, it is done one on one with the client and caregiver. The research also indicates that it is difficult to separate these two variables. Are the positive outcomes happening simply because of the environment or the one on one connection with somebody? While these cannot be separated, the outcomes are still positive.
There is also a positive impact on staff. One study, in particular, talked about how using this approach shifted the staff from being task-oriented to more resident-oriented or client-centered to put that in OT terminology. It helped them to see these patients with dementia in a new light. Instead of thinking about the clients as "tasks" they have to do ("I have five showers to give."), it switches the focus to "I have to help five clients." Overall, it had a positive impact on the staff and their relationships.
The research also supports a positive impact on families and caregivers. They reported less stress, burnout, and a higher quality of life. It can also impact other healthcare professionals and administration. We will talk a little bit about that later in the presentation. This can impact facility quality measures, incident reports, and the Department of Health survey outcomes.
Steps for Developing a MSE
Now, we are going to talk a little bit about the steps for developing a multisensory environment.
1. Gather sensory items for MSE or mobile cart.
- Vision
- Hearing
- Taste
- Touch
- Smell
- Vestibular & Proprioceptive Systems
I first used this approach in a nine feet by nine feet room. It was an unused office area that I asked if I could use to help with residents' behaviors. So, it does not have to be a large space. I would actually advocate that it is a little bit smaller. Certainly, if you are in a setting that provides a bigger room and access to very expensive equipment, you could do that. However, while that is nice, the items that I used were very low tech and inexpensive. This was helpful if the client was going home as I could recommend something that could be obtained at a discount store for 15 or 20 dollars. Another thing that you can use if you do not have access to a room or you are traveling from location to location is a sensory bag or cart.
