The two main approaches to Dementia treatment are pharmacological and non-pharmacological. Pharmacological means that the treatment is using drugs or medical intervention. You will hear terms like “amyloid plaques” and “treating the cause” and there is a new drug or therapy on the market each day, it feels like. Often these drugs are barely effective, if at all, but because there is a desperation for a cure, they are pushed through to market and people pay more than they can afford for them. The main issue in the pharmacological approach is that the medical community has not determined what specifically causes the different dementias, beyond genetics. Without knowing the root cause, it is near impossible to cure. Alternatively is the non-pharmacological approach — one that approaches addressing the disease rather than trying to cure it without knowing its cause. This approach is what this course focuses on. The numerous benefits of non-pharmacological treatments is that (1) anyone can do them and they cost nothing, (2) they allow for better interactions, (3) they play to the strength of the individual living with dementia, and (4) you can do them in addition to any medical treatment and they can only help.

Many people fall into the “Despair Narrative” and falsely believe that an individual suffering from dementia is “lost”. They are not. Dementia affects the brain’s ability to process, and similar to how sometimes you can have a word on the “tip of your tongue” but cannot find the word, an individual with dementia may not recognize a loved one, or say that a spouse or a child is not that, it does not mean that the person does not, deep down, still know the person. Actions speak louder than words. The way an individual with dementia hugs or greets or talks to a loved one, even when they cannot recognize them, is very different than when they talk to anyone else. Those with dementia require a different level of communication approach, but it is simply a different way of processing and communicating; they ARE still here.

Dementia affects the brain in making it more difficult for an individual to process complex tasks. Complex tasks are a series of simple tasks in which one usually needs to decide in what order the simple tasks are done – think getting dressed or laying the table. For individuals with dementia, simple tasks are achievable, but the necessity to come up with the simple tasks needed, and the order they need to be done, usually makes complex tasks too hard for them to accomplish. To empower an individual with dementia, it’s important to prime them to do simple tasks on their own.

Individuals with dementia have a slowed level of processing if items on their periphery — to the sides of them or from behind. They lack a good amount of situational awareness and are best approached from the front. It seems like a simple thing, but often we don’t think about it — we join someone from the side or from behind, and because they sense we are there, it is not a problem. With someone living with dementia, until they fully see you, they may not be aware of you, and so the interaction is start as if you sort of jumped out of no where and surprised them.

Tertiary Symptoms are not real symptoms of a disease but more a product of how the disease affects someone. In the case of dementia, anger and depression, are all tertiary symptoms — they are the affect of someone being told they are wrong, feeling like the things they think and feel are incorrect, and then their behavioral reactions on how to protect themselves. When you lash out in anger, no one comes to tell you you are wrong, they avoid you. When you withdraw and stop talking as much, people don’t have the opportunity to correct you because you aren’t saying anything. So realize that changing these tertiary responses are easily within your control, if you can change the way you communicate with those living with dementia to one that plays to their strengths.

“Yes, And” validates and joins in the reality that a Person Living with Dementia (PLWD) is going through; it is in contrast to a “No, But” that negates and then corrects an individual. When you are constantly told that you are wrong, how do you respond? You withdraw, you become depressed, you can become aggressive and push people away. So when approaching interactions with PLWD, use “Yes, And” – accept their reality (or validate their feelings) and then show them that you are on the same team. This does not mean that if someone is having a delusion to fully ride the delusion, but it does mean you can start at a place of agreement – “I need to pick up Jimmy” – even if Jimmy does not need picking up, the feelings of anxiety that the individual has surrounding the belief that they need to pick up Jimmy are real. You can always “Yes, And” feelings. Once you “Yes, And” a situation, you can thread it to a safe and calming place – You can validate feelings of anxiety, agree to help the person, and by going along initially (Saying “Yes”) you then have a willing teammate. You can help the person get ready to go get Jimmy, and in the process maybe comment on the beautiful jacket they have or that photo on the wall of them and you will be amazed that the PLWD’s focus can change. And instead of saying “No” and making the PLWD feel bad, you have said yes, de-escalated a tense situation, and allowed the person to feel validated fully along the way.

In improv a performer can instantly create a character perspective by choosing their status (higher, equal, or lower) compared to the person they are doing a scene with. A higher status individual will always talk down to someone and make decisions for them. Someone of equal or lower status will always respect the choice and opinion of the other person. When interacting with someone with dementia, by assuming your status to be equal to or lower than the person living with dementia, you can create an easy way to always offer them genuine choice and control rather than accidentally making decisions for them without asking permission.

Episodic memory (the ability to recall specific memories) is one of the areas most affected by dementia. Oftentimes, people think that means that a PLWD (person living with dementia) is no longer their self anymore; this is NOT true. The truth is that we must adjust the way we communicate in order to get to the personality of the individual. By focusing on opinions over specific memories, an individual living with dementia can shine. And you’ll find a complete lack of them being at a loss of words. Let’s change how we communicate

By assuming that an individual with dementia can do something, you prevent yourself from removing their genuine choice and control. Many care-partners want to help and assist but, in the process, stop someone living with dementia from being able to do things they can, and enjoy, doing. Instead of just doing for them, assume that they can do something and only assist them when they show a desire or need for assistance. Complex tasks are harder for those with dementia to do, so instead, break up complex tasks into simpler ones, and they will be easier for a person to do themself.

It is difficult for individuals with dementia to follow complex stories or conversations without a little assistance (see the technique of “Asides”). That said, one easy way to have a conversation is to ask what they think about something (or their opinion on something) and then follow their lead, asking for more information on their thoughts or their opinions, and kind of go with them for the conversation … wherever is may lead.

One of the most stressful aspects of caregiving is the lack of control a caregiver often feels. If only we could control the situation, it would play out the way we want it to. But full control is not something any of us ever have, in any walk of life. Realizing and accepting that those items out of your control only can cause you stress if you try to control them is a big step to reducing stress. Those with dementia can be as obstinate (or even more obstinate) than those without dementia. Think about how you would react if you wanted to do something, and someone else told you that you had to do something different; so why would someone with dementia act any differently? All this to say, you may have set plans but you have to always be open to them changing. Utilizing the skills of “Yes, And” and “Threading” are key to being flexible but also still keep things on track.

One of the most overlooked items for care-partners is self-care. You focus so much on caring for your loved one that you forget to care for yourself. But there is one simple truth: When you are too exhausted or too overwhelmed or sick, it is impossible to really care well for someone else. So putting yourself first, when it comes to self-care is extremely important. Find ways to de-stress; reach out to others when feeling overwhelmed; get sleep when you are exhausted; and when you feel sick, take care of yourself and heal, instead of just pushing through. You’ve got this, but you also need to be aware of your limits and to make sure you are taking care of yourself.

Understanding the Concept of Infantilization.  Caregivers can fall into the trap of trying to “help” someone with dementia by doing a task for them, but as a by-product the individual with dementia is accidentally being infantilized. Infantilization is not about “doing child-like things” but more about having the genuine choice and control to do what one wants. When you take that choice and/or control away from an adult living with dementia, that is when you creep into treating them like a child. How NOT to Infantilize Infantilization is the act of treating someone like a child. Too often, this is misinterpreted to mean an adult should not do things that are associated with children — imaginary play, read books that are for children, etc., INSTEAD of the truth, that infantilization happens most when you remove a person’s genuine choice and control — that is what we too often do to children. Believing that someone can, and NOT doing something for them when they can do it themselves is the best way to avoid infantilizing someone living with dementia