Module One

Hello everyone. As we embark on this journey to better understand and care for those with dementia, let’s start with the very foundation of what we’re addressing.

When we talk about dementia, we’re referring to a complex constellation of symptoms, not just one single disease. It’s like an umbrella term covering a vast array of brain disorders that manifest through symptoms affecting memory, cognition, and behavior. But let’s unpack that a bit.

Memory loss is often the most recognized symptom, but it’s not just about forgetting where you left your keys; it’s the kind of forgetfulness that interferes with daily life — forgetting names of loved ones or the way back home.

Difficulties with thinking, problem-solving, or language go beyond occasional confusion with a recipe or balancing a checkbook. It means struggling to follow a conversation, repeating questions, or taking much longer to do tasks that were once familiar.

Now, mood changes can be subtle or pronounced, ranging from apathy to depression, or even uncharacteristic euphoria. Behavioral changes might include social withdrawal, agitation, or a shift in personality and judgment, like becoming unusually suspicious or disinhibited.

As support workers, we must grasp these nuances. Each symptom affects how our clients interact with the world and how we can best interact with them. Understanding dementia is about recognizing these changes not as behaviors to manage, but as communication to interpret. It’s about finding the person within the dementia and connecting with them on their terms.

Throughout today’s session, we’ll be exploring these symptoms not just as challenges, but as opportunities to connect, to support, and to care. Now, let’s dive deeper into the nature of these symptoms and how we can address them with compassion and skill.

As we delve into the behaviors commonly associated with dementia, it’s vital to approach them with an empathetic mindset. These behaviors aren’t just clinical symptoms; they’re expressions of an internal experience we need to understand.

Aggression in dementia can be verbal, like shouting or name-calling, or it can be physical, manifesting as hitting or pushing. But what’s crucial to remember is that aggression usually stems from a place of fear, frustration, or discomfort. Our role is to decode what our clients are trying to communicate through these actions. Are they in pain? Are they overwhelmed? Our response should be to calm and reassure, never to confront.

Anxiety or agitation can appear as restlessness or an inability to settle. This could be triggered by changes in environment, routine, or simply the internal struggle to make sense of a world that’s becoming increasingly unfamiliar. By maintaining a calm presence and offering a reassuring hand, we can often alleviate these feelings.

Confusion is a hallmark of dementia and can lead to disorientation with time and place. Familiar settings may suddenly seem strange, leading to distress. Grounding our clients in the moment with gentle reminders can provide comfort.

Repetition, whether it’s repeating questions or actions, can be a sign of memory loss or seeking reassurance. Patience is key here. Responding with the same calm answer each time provides stability in their shifting reality.

Suspicion arises as individuals may misplace belongings and then believe they’ve been stolen, or they may not recognize their reflections and become frightened. Reassure them with a soft tone and redirect the conversation to a happier subject.

Wandering and getting lost can be one of the most challenging behaviors. It’s often a sign of searching for something or someone, or a need to fulfill a former routine, like leaving for work. Ensuring a safe environment and using techniques like therapeutic fibbing can be helpful here. For example, saying “The office is closed today, let’s have a cup of tea instead.”

Lastly, trouble sleeping can disrupt not only the night but also the day. Establishing a routine, ensuring physical activity and reducing naps can promote better sleep.

Understanding these behaviors as forms of communication rather than random symptoms empowers us to provide more effective, compassionate care. Let’s keep this in mind as we continue our training today, and remember, you’re not just caregivers; you’re the bridge to a world that our clients are struggling to navigate.

Supporting someone with dementia requires learning clues to enhance their well-being.

Firstly, it’s crucial to figure out what’s behind a certain behavior. Think of it as being a behavior detective. Did something specific happen before the behavior started? It’s like finding out what causes an allergy — once you know, you can avoid it.

Ask yourself:

What should we steer clear of with the client? It could be as simple as a loud TV or as complex as a certain time of day.

What has helped calm the client before? Maybe it’s a favorite song, a cozy blanket, or looking through an old photo album.

Have a chat with the family. They know the person you’re caring for the best. What makes them smile? What’s guaranteed to cause a frown?

Being positive and reassuring is like a superpower. Approach every situation with a smile, your tone soft and your pace slow. It’s comforting and can help defuse tension.

And if things get challenging, think of redirection as a handy detour. If the current activity or topic seems to cause distress, gently guide them towards something more pleasant or engaging. It could be as simple as moving from a noisy room to a quieter one, or shifting from a challenging task to one they enjoy, like folding laundry or watering plants.

Remember, you’re there to be the guide by their side, to navigate the foggy moments and bring them back to a place of comfort and familiarity.

As we delve deeper into dementia care, it’s important to understand that Alzheimer’s disease, the most common cause of dementia, can come in different forms. Today, let’s focus on two specific types: early-onset and late-onset Alzheimer’s.

Early-onset Alzheimer’s is a bit of a curveball. It typically shows up between the ages of 40 and 50. It’s pretty rare, affecting only about 5% of all Alzheimer’s patients. Now, here’s something to remember: folks with Down Syndrome are at a higher risk. We’re not entirely sure why it happens, but we do know it’s a reality for some, and it requires us to adapt our care for people who are often still active in their lives and communities.

Then there’s late-onset Alzheimer’s, which is the kind you hear about most often. This type typically begins after age 65. The tricky part is, scientists are still working hard to figure out exactly why some people develop it and others don’t. But one thing’s clear: it’s the most common form we see.

So, whether we’re supporting someone in the prime of their life dealing with early-onset, or someone who’s older and facing late-onset Alzheimer’s, our care and support need to be just as personalized as the disease itself.

Remember, each person’s experience with Alzheimer’s is as unique as they are. Our role is to get to know them, understand the type of Alzheimer’s they’re dealing with, and tailor our care to fit their life and their needs.

Navigating the signs of Alzheimer’s is a bit like being a weather forecaster, looking out for the early signals that tell us there’s a change coming.

First up is memory loss that really shakes up daily life. We’re not talking about occasional forgetfulness. We’re looking at the kind of memory loss where someone might forget important dates or events, ask for the same information over and over, or rely heavily on memory aids for things they used to handle on their own.

Then, there are the challenges in planning or problem-solving. Some people may experience changes in their ability to develop and follow a plan or work with numbers. They may struggle with following a familiar recipe or keeping track of monthly bills.

Difficulty in completing familiar tasks can also signal a shift. This could mean having trouble driving to a known location, managing a budget at work, or remembering the rules of a favorite game.

Now, confusion with time or place is another sign we look out for. Losing track of dates, seasons, and the passage of time is common. Sometimes, people may forget where they are or how they got there.

Visual images pose their own challenges. This could mean trouble reading, judging distance, and determining color or contrast, which may cause issues with driving.

Noticeable problems with words in speaking or writing can arise. Someone may struggle to follow or join a conversation. They may stop in the middle of a conversation and have no idea how to continue, or they may repeat themselves.

Misplacing things and losing the ability to retrace steps is a sign that needs attention. A person with Alzheimer’s may put things in unusual places. They may lose things and be unable to go back over their steps to find them again.

Decreased or poor judgment, like using poor judgment when dealing with money or paying less attention to grooming or keeping themselves clean, can occur.

Withdrawal from work or social activities is a red flag too. A person with Alzheimer’s may start to pull back from sports, social activities, work projects, or hobbies that they previously enjoyed.

Lastly, changes in mood and personality can come into play. The mood and personalities of people with Alzheimer’s can change. They can become confused, suspicious, depressed, fearful, or anxious.

As caregivers, we need to be vigilant for these signs, not to label our clients but to better understand and support them. It’s about providing care that respects their experience and meets them where they are.

Now, let’s zoom in on the early stage of dementia. This stage is often subtle and can slip by unnoticed, as changes may be mild at first.

Imagine a battery slowly starting to drain; that’s like the energy and spontaneity levels in early-stage dementia. People may still go about their day, but the zest they once had starts to fade, and it’s usually so gradual that it might not wave any red flags right away.

Memory loss can be slight but noticeable in this stage. It’s not just misplacing the keys but forgetting important dates or repeating the same question because the answer didn’t stick the first time.

Mood swings can happen, too. Think of mood like weather—it can be sunny one moment and stormy the next. People may seem upbeat and then suddenly become sad or angry without any apparent reason.

Learning new things or reacting quickly can be challenging. It’s like the brain’s ability to process is getting a bit sluggish. Even familiar tasks might take longer, and there’s often a preference for the well-known over anything new, because new is now synonymous with complex.

Speaking of tasks, basic ones are still manageable—like dressing or making a cup of tea. However, when it comes to more complex activities, like managing finances or planning an event, that’s where a little help might be needed.

Communication changes, too. Speech and comprehension take a hit. Conversations may be punctuated with pauses as the person searches for the right word or tries to hold on to the thread of the discussion.

Getting lost in previously familiar places can happen, or financial responsibilities like bill payments get neglected.

As awareness of these changes creeps in, so can a host of emotions. It’s not uncommon for someone to feel depressed, anxious, or irritable. They’re sensing that loss of control, and it’s unsettling.

So, what does this mean for us, the caregivers? It means we need to be the gentle support, the subtle guide. It’s not about taking over but about assisting, encouraging, and sometimes just being there. We’re there to help bridge the gaps that dementia creates, always with a spirit of patience and compassion.

As we move into the middle stage of dementia, the journey becomes more challenging. This is the stage where the illness begins to have a disabling effect on daily life.

Think of the mind as a bookshelf, with the most recent memories—the books at the top—toppling down first. That’s why someone with middle stage dementia might recall their high school friends but forget what they had for breakfast. Recent events start to blur and fade, which can be frustrating and confusing.

As Alzheimer’s advances, it can cloud the understanding of where you are, or even what day it is. It’s like the internal GPS and calendar start glitching. This means that caregivers need to become the compass and the schedule, providing clear, simple directions and repeating them as needed, without showing any sign of frustration.

Communication changes significantly during this stage. The person may begin to invent new words for things they can’t remember or even use familiar words in unusual ways. It’s like they’re trying to fill in the blanks when the right words just won’t come.

And faces that used to be familiar might now seem like strangers. It’s not a reflection of their feelings toward the person but a symptom of the disease affecting their recognition.

In this stage, our role as caregivers is to be a beacon of patience and clarity. It’s about adapting our communication to their needs, whether that’s through using non-verbal cues or simplifying our language. It’s also about providing stability in a world that’s becoming increasingly unstable for them.

Most importantly, it’s about maintaining their dignity and sense of self. We’re there to support, not to judge; to assist, not to take over. It’s about ensuring safety, comfort, and as much independence as possible.

In the late stage of dementia, things change quite a bit. Our clients may not chat or respond as they used to. They start to forget the faces of friends and family, and their bodies begin to need a lot more help.

At this point, they might not be able to control when they go to the bathroom, which means we need to be there to help them stay clean and comfortable.

Eating and drinking can get tough because their bodies forget how to chew and swallow properly. We need to be very careful to make sure they’re getting enough nutrition and staying safe during meals.

Being bedridden comes with its own set of challenges. Our clients can’t move around much on their own, and this can make them more likely to get sick from things like pneumonia. We need to keep a close eye on any signs that they’re not feeling well because they may not be able to tell us.

Breathing can also get harder, especially if they can’t move around. It’s important for us to help keep them as comfortable as possible and work with doctors to take care of any respiratory issues that come up.

This stage can be tough to talk about, but it’s a natural part of the disease. Our clients may eventually slip into a coma. During this time, our job is to be there for them, making sure they are as peaceful and as comfortable as we can make them, and supporting their families too.

As caregivers, our hearts and skills are put to the test. We’re there to give care that respects who they are, right to the end, and to remind them through our actions that they’re not alone.