An estimated 5 million Americans suffer from dementia and more than 15 million people in the United States are providing unpaid caregiving. Dementia, as we know as clinicians is the most challenging. It's a very costly disease to treat, spending about $215 billion in 2010. Those are the most recent statistics from the Agency of Healthcare Research and Quality. Caregiving is the most costly aspect of dementia, both informal care (family and friends) and formal care from long-term care or assisted living.
Behavioral and Psychological Symptoms of Dementia
Patients who have behavioral or psychological symptoms challenge the caregivers, increase the difficulties associated with caregiving, and unfortunately, increase the cost of care. Upwards of 30% more is spent when the patient has behaviors versus when they don't. Behavioral and psychological symptoms of dementia (BPDS) is an umbrella term used by the International Psychogeriatric Association. It's defined as symptoms of disturbed perception, thought content, mood, or behavior that frequently occur in patients with dementia. Now, if we look specifically at the nursing home population, anywhere between 67 and 78%, depending on the research that you look at, of the patients have dementia. Of those having dementia, 76% of them have some sort of BPSD. We know what the symptoms look like. It could be yelling out. It's pacing. It's wandering. It's resisting care. It's overdressing. It's underdressing. It's inappropriate sexual behaviors, hitting, scratching, biting, and/or sleep disturbances. The list goes on and on and on. The issue, though, is that we label those patients don't we? We label them as agitated, as disruptive, as problematic, as refusals, or uncooperative, when in fact, the issue truly is their behaviors. I'm not telling you anything you don't know.
Distress to Caregivers
There is a lot of distress to our caregivers related to those behaviors, and particularly our family members. The distress is associated with caregiver anger, resentment toward the patient, stress, psychological health declines. Unfortunately, caregivers, paid and unpaid, may be inclined to abuse the client or turn to antipsychotic medications to treat the behavior rather than addressing the underlying cause. You might be saying, "oh gosh, that's crazy". The reality is abuse is still out there. We wouldn't be talking about it, and the Centers for Medicare & Medicaid Services (CMS), wouldn't continue to educate about it if it wasn't still a significant issue.
As we talk about the behaviors, there are four specific theoretical frameworks to explain the etiology of behavioral disorders.
The first is the biologic/genetic framework. This framework talks about the symptoms of dementia causing the behavioral disturbances. Dementia is causing changes in the brain and those changes in the brain thus cause problematic behaviors.
The behavioral framework suggests that behaviors stem from this relationship between the patient and the care environment. In that particular model, patients are believed to exhibit those behaviors in response to some stimulus in the environment. In turn, the caregiver then responds to that behavior, giving more attention to that person so that we see this cycle of problematic behavior continuing to propagate between the patient and the care partner.
Reduces Stress Threshold
This framework talks about dementia reducing an individual's ability to experience environmental stimuli, such as sounds or sights.
And then finally, the unmet needs framework, which is what we'll talk about next. Behaviors are believed to stem from unmet needs with this theoretical framework.
- Physiological. This includes the needs of hunger or thirst, bodily comforts and obviously take the highest priority.
- Safety/security. That need to feel safe and assured that you know what's gonna happen and what's happening in your environment.
- Belonging and love. This includes a need for friendship, having a family. Sexual intimacy maybe falls in there, too. When we don't have acceptance and belonging, we feel loneliness, anxiety, or depression.
- Esteem. Everyone has this need to be respected and recognized. And you know, you think about how you, yourself, fill these needs through your work or through those activities that you enjoy. How would you feel if you couldn't do these things? That's what our patients with dementia experience. They don't have all of these basic needs met, and sometimes we see behaviors related to that.
Care Models Addressing Behaviors
There are two specific care models that address behaviors. The first is the Progressively Lowered Stress Threshold Model and the second is Need-Driven Dementia-Compromised Behavior Model.
Progressively Lowered Stress Threshold Model
According to this model, adults with dementia are less able to manage their stress as the disease progresses. They have a lower threshold for stress. When we talk about stress, it's not our typical stressors like you and I would experience. It's things like fatigue, changes in routine, change in the caregiver, some alteration in their environment, demands of an activity exceeding their ability, a lot of stimuli, perception of loss, pain, discomfort, and/or medication side effects. That list can go on and on. Those are their stressors. We'll be talking about this as we go along, but there are six principles of care related to that. We can go in and modify the environment and modify the task that we want the person to do. We use anxiety as a gage. I oftentimes say that behaviors don't just pop out of nowhere. We've escalated up to that behavior. Something has gone on with this person, and we've escalated up, and now we see this behavior. So could we have recognized it earlier and looked for anxiety and looked for other behaviors? We want to provide caregiver education, support loss and enhance their safety, give them positive reinforcement, et cetera, and that can help to manage that stress in the behaviors.
Need-Driven Dementia-Compromised Behavior Model
This model talks about having two different kinds of factors. The first is background factors which are things that we're not gonna change. It includes their health status and their demographic and psychosocial variables such as their marital status, or their personality traits. Proximal factors, on the other hand, we can have a lot of impact on and a lot of control. This will gonna guide our interventions. Proximal factors include unmet physiological needs or psychological needs. For example, contact with their family or disturbing environmental factors. It could be a cold room, or there could be a lot of stimulation. It may also be an uncomfortable social surrounding. Maybe there are far too many people.
Responses to Stress
Typical stress relievers may include:
- Go for a walk
- Talk on the phone. Maybe you vent to someone when you're really upset.
- Take a bath.
- Put on comfortable clothes. I don't know about the rest of you, but when I have to go out and I'm wearing a suit, or I'm all dressed up, the second I come home, I get into my sweats or something comfortable.
- Go shopping. Maybe you do retail therapy.
- Reading a book.
Dementia Behaviors include:
- Wandering- (We go for a walk)
- Asking the same thing over and over. (We can repeat things to vent, make a point)
- Taking off clothes. (We change out of clothes for something more comfortable) They take off their clothes.
- Rummaging. (We go shopping)
- They pace (We exercise)
- Inappropriate sexual behavior. (Our typical stress relievers are having sex, potentially).
This information is also in your handout because I want you to think about these dementia behaviors. To that person with dementia, these are normal. If you look at how they kind of parallel what we do, are they that far out of the realm of what could be considered normal? I think the answer to that is no. There are oftentimes not inappropriate behaviors as much as there are inappropriate locations, time, and place for those behaviors.
The reality is disruptive behaviors are why people come to long-term care. It's why they go to institutions. Disruptive behaviors are inappropriate, repetitive or dangerous behaviors which are disruptive to the living and working environment in the nursing home. One of the most common disruptive behaviors is wandering. We see wandering in 40% to 60% of our residents. Aggression and agitation is another common disruptive behavior. Anywhere between 50% and 80% of our residents have aggression and agitation.
All behavior has meaning and is indicating something. As I said, it doesn't just pop out of nowhere. That person is communicating to us. They're trying to tell us something such as the task is too difficult, the environment is too crazy for them, or whatever it happens to be. We need to look at each and every behavior as an unmet need of that individual. Behaviors are only considered truly problematic when the safety or wellbeing of that particular patient or someone else in that environment is compromised, or we can't figure out the trigger or the cause. We talk so much in our environments about providing skilled interventions and skilled therapy. Trying to figure out what that trigger is, or what that cause of that behavior is skilled. That's something that you, as a physical therapy clinician, can bring to the table. You can try to figure out what is causing that behavior.
Common Behaviors include:
- Sleep problems
- Resistance to ADL
- Continence difficulty
- Getting lost/wandering
- Catastrophic reactions
- Repetitive actions
- Crying out
- Inappropriate social and sexual behavior
Let's think about a nursing home environment or any institutional-type environment. Is there really ever a day-night continuum? The answer to that is no. We oftentimes have lights on in the hallway and nurses having a conversation at the nurses' station. There is constant access to coffee. At nighttime in those facilities, they are stocking the linen shelves, cleaning and waxing the floors in the middle of the night. How can you possibly sleep through that? Again, I don't know about the rest of you, but when I go to bed at night, no one's in my kitchen restocking my pantry. That's not normal. Then, we wonder why residents don't have good sleep. Additionally, think about ADL and incontinence. Again, two of my favorite topics. Shower day is my favorite and I realize that you guys may not be participating in shower day or helping of an individual with shower day. Think about your own schedule. How many of you shower? How many of you take baths? How many of you do both? How many of you shower in the morning? How many in the evening? How many of you wash your hair first, your body first? We could get incredibly detailed to say, how many of you would never use a washcloth on your face that's touched your feet or your privates?
Next, think about the routine that this person now has in our communities. A lot of times they eat when they're told to eat and what they are told to eat because there aren't a lot of options. They shower twice a week maybe, sometimes more, sometimes less. I wash my hair every single day. In long-term care, sometimes they only get their hair washed once a week. Think about all of that. It's not a resistance to ADL sometimes. It's about not knowing what's coming next and not following their individual routine. The takeaway is, regardless of the activity, (transfers, gait, ADL) we need to try to tap into their routine. That's how we will minimize our behaviors.
The same thing occurs with continence. Think about that person with dementia. As they progress through those stages, they start to lose their contrast sensitivity, don't they? When you walk into most bathrooms, what do you see? You typically see a white toilet, white floor, white walls, white sink, and the trash can is something other than white. We oftentimes see someone urinating or defecating in the trash can because that's all they can see. Take that idea into any activity such as asking the individual to walk down a hallway where there's no contrast. We see poor safety or poor environmental negotiation in managing those architectural barriers. If they can't see them, how can we expect them to be successful?