How to Establish a Daily Routine for a Caregivers

Hello, this is the Truth, Lies and Alzheimer's Show brought to you by Global Media Network LLC and Passionate World Talk Radio. Passionate World Talk Radio is a wholly owned subsidiary of Global Media Network LLC, and our motto is educate, enlighten, and entertain. Hello to all of you who have tuned in to listen to this episode of Truth, Lies Alzheimer's. I'm Lisa Skinner, your host, and I'd like to shout out a very warm welcome to all of you who have joined us today. I thank you and appreciate you so much for being here. You know, the purpose of this show is to talk about every aspect of Alzheimer's disease and dementia. That's going to include the good, the bad, and yes, the ugly. Our goal is to get to the truth, dispel the lies and myths, and unveil what I call the secret faces of Alzheimer's disease. That way you can understand what it's truly like to live with these brain diseases. My hope is to zoom outside the paradigm of it exclusively being a memory loss condition and to shift people's understanding of just how dramatically these diseases impact the lives of those who have it, as well as their caregivers, family members— well, for that matter, anybody who is involved in the life of a person living with dementia. On today's episode, I want to talk to you about why routine is so important. And also, I'm going to discuss with you what we call a catastrophic reaction, what it is and what to do about it and how to possibly avoid them. And then in our new What's News segment, I am going to give you the most updated information on diagnosis, cures, and treatments for Alzheimer's disease. So let's get started. Why do you think routine is important for people living with Alzheimer's disease and related dementia? I know that when people live in the memory care units at elder care facilities, they are put on a— in a routine and they follow that routine pretty much every day to the letter. Where routines seem to fall apart is when people with Alzheimer's disease and dementia are living with their families or alone in regular homes, and they don't always either know to put them on a routine or put them on a regular routine. So, I'm going to explain to you why routine is important. Memory loss and other changes to the brain caused by brain disease, as we all know, creates stress, anxiety, and irrational behaviors. So the importance of routine and familiarity for people living with them is profound. Daily structure can help decrease undesirable behaviors such as aggression, restlessness, agitation, which is gonna allow everyone to have more positive experiences. Daily routines help everyone involved know what to expect. Familiarity is important because dementia gradually impairs a person's ability to plan, initiate, and complete activities. So by creating an environment of familiar routines and activities, it allows them to feel comforted, secure, and calm. If they can still perform an activity, they can still retain their sense of control and independence. So establishing a familiar pattern of events can also help transfer the schedule of a daily routine into the long-term memory portion of the brain. Did you have any idea of that? Establishing a routine could be so powerful. Again, this is where knowledge of their habits from when they had a healthy brain will be important. We've talked about that on previous episodes. Being privy to their past preferences and routines, such as their bathing times, dressing habits, grooming habits, as well as eating and toileting routines, can facilitate the activities that resonate with their pre-dementia life and offer the familiarity that helps them feel secure. A routine that includes activities that are within your loved one's ability level is also key. In doing so, you will create a predictable environment that brings some comfort and understanding into their now confusing world. Offering your loved one a day without surprises is the best way to help them expend energy, relieve anxiety, and minimize undesirable behaviors. It's also important that your loved one is able to do as much as they can for themselves for as long as they can. You really want to promote independence. Then, as the disease progresses, It's still important to maintain these routines. Eventually, your loved one will need your help with most of their activities of daily living, but as long as they can still perform some tasks, even with your assistance, try doing them together. Doing everything for them may be easier, but it doesn't allow them to retain any of their valued independence. And we know that it speeds up the decline of their illness when they feel they have no purpose or meaning. So, one of the first steps to managing behaviors that show up with Alzheimer's disease and dementia is to be aware of the causes of behavioral responses. Why do difficult behaviors even occur? They occur for many reasons. I'm gonna discuss behavioral problems that can occur related to each of the 5 root causes. Number 1, it could be a physical cause. Number 2, due to emotional health. Number 3, environmental causes can trigger behaviors. Tasks, and number 5, communication. Behavioral problems can occur as a result of physical or physiological reasons, such as they have pain, they're tired, they're uncomfortable, their speech is impaired. With dementia, they have short attention spans. Maybe they have a new medical problem or an an existing medical problem, and complications from medications can trigger behavioral problems. Now, emotional problems can occur as a result of emotional or psychological reasons, such as depression, feelings of loss of control, hallucinations, which we know are common with dementia, They could be feeling scared, sad, or lonely. They have fears of something— health, death, etc. Their loss of identity, loss of family or spouse, and/or feelings of inadequacy, such as being unable to complete a task, which can be extremely frustrating. For people with dementia. So, sometimes, and the thing that's really, really important to know is these behaviors, if not handled or managed properly, can escalate to what we call catastrophic reactions. Okay, what are catastrophic reactions and why do they happen? Dementia, according to Webster's Dictionary, is defined as a condition of deteriorating mentality. A catastrophic reaction is defined as an intense response to what seems to us to be a trivial event. However, to the person living with dementia, It is not trivial to them at all. They may be related to past events, unhappy memories, past communications, or instructions that are simply too difficult for them. The dementia patient can have a sudden mood change, can cry, become verbally abusive, or even, even physically violent. Catastrophic reactions happen when a person becomes so angry, so frustrated, or so hurt that they can only explode to relieve the overwhelming emotions that triggered the exaggerated response. It is not a time of rational or normal behavior. Because dementia can distort the way a person interprets reality due to their inability to cope with real or imagined events. Keep that in mind. Due to the damage and changes to their brain, they lose the ability to apply logic and reasoning to a situation like we were able to when we have a healthy brain. Therefore, the reactions you are witnessing is based on a raw emotional response. Feelings of being overwhelmed are common for a variety of reasons. During a catastrophic reaction, you might see sudden mood changes such as crying or laughing uncontrollably, screaming, shouting, becoming verbally abusive, and sometimes even physically violent. One of the myths of Alzheimer's disease and dementia is that violence is an inevitable part of the progression of the disease, and I want to tell you and emphasize this is not true. Anger, aggression, and frustration are part of each one of us, and these emotions are responses to situations All have one thing in common, even with a healthy brain, and that is a triggering event. However, difference between someone with a normal or healthy brain and a person suffering from dementia is that the person with dementia no longer has the capability to analyze and rationalize what is happening to them. They cannot identify their own triggers or put them into perspective. They cannot even tell us what has upset them and may not even remember that they're getting angry or had gotten angry. Behavioral and psychological symptoms of dementia also include agitation, where they can easily get upset. They start repeating questions, arguing, complaining, just display anxiety. They're worried, they shadow, which is following a caregiver around. They start hoarding, pacing, inappropriate screaming out, crying out, and/or disruptive sounds, rejection of care such as bathing, dressing, grooming. They show depression, apathy or indifference, repetitive questioning, psychosis, which are delusions or distressing beliefs and hallucinations, aggression, which could be physical or verbal. Maybe they'll have sleep problems or nighttime behaviors such as waking and getting up at night, wandering, or rummaging. Have motor disturbances, again, repetitive activities without purpose, like we heard in our story, Mary Ann, remember? Her repetitive behavior was to fold, tuck, and repeat those little tissues, as well as a variety of inappropriate behaviors such as disinhibition, which are socially inappropriate behaviors or sexually inappropriate behaviors. These behaviors are all commonly related to having a disturbed perception, thought content, mood, or behavior. And it is not uncommon for one or more of these symptoms to affect nearly all people who suffer from dementia. The complex The complexity of these symptoms means that there is no one-size-fits-all approach to care. Therefore, it is extremely important that the care strategy be tailored to each patient as well as each individual caregiver. And in the last several episodes, this is what I've been sharing with you in what we call a person-centered approach to care. The most useful technique is to simply back off while you are assessing what may have caused the catastrophic reaction. Some causes of catastrophic behaviors could include stress caused by the excessive or confusing demands of any situation. Frustration can be caused by misinterpreted messages, an underlying illness, or an unmet need. So, look first at all of the basic needs. Are they cold or hungry? Are they in pain? Do they need to use the bathroom? Can they find the bathroom? Are they feeling safe? A person with dementia also loses the ability to cope. So, keep in mind that anything can be upsetting them. The cause and effect of behavioral triggers include related disease factors, unmet needs, caregiver factors, environmental triggers, and interactions of individuals, caregivers, and environmental factors. Generally, people with dementia become agitated due to 3 potential trigger categories. It's a— look at medical situations, a physiological occurrence, or an environmental cause. I'm gonna dig a little deeper into what some of these medical triggers could be so you could pay attention and look for them. So medical triggers can include sickness, fever or pain, an undiagnosed medical condition, but it can also include issues such as side effects, interactions with, or adverse reactions to a medication, sores, open wounds, pressure areas, or bruises, earaches, toothaches, headaches, urinary tract or other infections, constipation, hearing or sight loss, where they may mistake something that they see, hear, smell, or touch for something else. People with dementia may disproportionately be affected by pain compared with those without cognitive impairment, and otherwise it can be exaggerated. Some of the physiological triggers that you want to look for are any unmet needs. Behavioral and physical and psychological symptoms of dementia are viewed as an expression of unmet needs or goals. They can be physical, psychological, emotional, or social. The loss of ability to express needs or goals verbally leads the person with dementia to communicate and express needs through various behaviors. Being surrounded by too many unfamiliar faces, including having too many caregivers present at one time, being hungry or thirsty or in need of a bathroom, having someone approach them too quickly from the side where their peripheral vision might be impaired, having someone talk too loudly or forcefully to them, misunderstanding directions or questions from a loved one, or a conversation that is occurring nearby. Perhaps they're feeling demeaned or disrespected by their friends, family, or caregivers. Low self-esteem caused by the inability to communicate and care for themselves. Look for them being too hot or too cold due to what they're wearing. Maybe they're just simply uncomfortable, like, been sitting in the chair, the same chair for too long and they need to get up and walk around or move. Maybe their clothes are too tight or their shoes are too small or even their hair is pulled back too tight. They could be feeling depressed, anxious, bored, lonely, or have feelings of isolation. So, lack of meaningful activity. A loss of in— inhibitory control can accentuate premorbid personality traits or lifelong psychiatric disorders such as major depression, anxiety, bipolar disorder, and schizophrenia. Now, factors related to the caregiver, such as a negative communication style like anger, screaming, or negative effect, coping abilities and strategies, and the mismatch between caregivers' expectations as well as the stage of the illness can also trigger or worsen symptoms. New or unfamiliar caregivers or separation, being separated from their loved ones, and they don't understand why. Excuse me. People living with dementia continue to need loving, safe relationships, and caring touch. They need constant reassurance even though it might not appear that way. So, some of the environmental triggers that can cause sudden change in behavior include an environment that is overwhelming to their senses. So maybe it's a place that they're in that's too loud or too crowded, like too much clutter, too much stimuli, since they're experiencing sensory overload, or a lack of stimuli, which could mean that there's just no activity and they're bored. People with dementia have progressive difficulty processing and responding to environmental stimuli, such as changes in their surroundings. A move can be upsetting, or even rearranging objects in a room can cause agitation. Therefore, their behaviors will vary based on the stage of the disease as well as the environmental stimuli. The stress threshold of a person with dementia becomes less tolerable and the potential for higher levels of frustration increases. They can become frustrated and display behaviors based on demands that exceed their functional abilities. Again, another change in the environment could be going to visit a place they haven't been before or making a change to their living environment. Being confused about their location and how they got there, even if they're in a once familiar place. When a personal space is invaded, whether it be by a friend, a family member, or stranger, stranger when you have them out in a public place. Being startled by a loud noise or loud voices. When an environment is too hot or too cold for them to become comfortable in. Lighting that might be too bright, not bright enough, or that creates shadows. White noise, such as a lawnmower outside. Or an appliance. A TV or radio that is left on all the time can also cause confusion. The room temperature being too hot or too cold. A change in their routine. That's why I emphasize how important routine is to them. A lack of routine or no agenda to help orient them to their— surroundings. Lack of orientation cues, such as the way to find the bathroom or the bedroom. This is a really interesting one that probably most people would never think of— shiny floors, because what looks nice as we go about our day-to-day activities can actually agitate a person with Dementia. What looks nice and clean to you can actually look like ice or standing water to a person with dementia. Who would have thought of that? Mirrors. When a person with dementia looks into a mirror, they often do not recognize themselves or they can get lost in the depth of that mirror. Color contrast. Colors can make a difference. Too much or too little color contrast can be disorienting because it can make it difficult— it can make it difficult to see the difference between the toilet seat and a wall or the floor and a two-toned carpet. Checkerboard tile or black doormats can look like holes in the floors. A person with dementia may also have a difficult time distinguishing food on a plate if the plate is the same color as the table. So, the key to— I'm sorry. And although some of the most common challenging behaviors and personality changes that dementia brings do include aggression, anger, apathy or disinterest, changes in personality, communication problems, following another person around the house all day, that's called shadowing, mood swings, nighttime waking, pacing, physical acting out or hitting, restlessness, and verbal abuse. In our upcoming episodes, I will begin to share with you the best practices for reacting to these behavioral changes that you may see that are triggered by all of the 5 causes that we just discussed. So, What's news today? I'm going to share with you the most up-to-date information, and this is as of February 16, 2023, as far as diagnosis, cures and treatments, where we are with those with Alzheimer's disease. Right now, as I speak, there still currently is no cure for dementia, but recognizing the early signs and symptoms is still extremely important. Many of us will read headlines like, "Oh, there's a simple test to diagnose dementia," or "New blood test to improve diagnosis of dementia" appear in the media every single day. A new miracle pill has just been developed to cure dementia, or a leprechaun has been discovered that can wipe away a dementia brain. I'm just being funny, but treatments that can stop diseases like Alzheimer's disease from progressing are not available yet. There's nothing available yet as of February 2023. However, with clinical trials now showing positive results, an early and accurate diagnosis will be important to find those that are eligible for disease-modifying treatments when they become available. Lisa Skinner: It is also very important to remember that there are lots of ways we can support people to live well with dementia, even in the absence of drugs to slow the progression. Sadly, the tests used to diagnose people today are not always accurate, and it can take months or even years to get the right diagnosis. So, again, as of February 2023, so just a few short months ago, recent research from the USA has improved the accuracy of blood tests for Alzheimer's disease. Researchers at the University of Pittsburgh developed a blood test that does detect a specific form of tau which is a protein that only comes from the brain. This test can detect Alzheimer's disease with an accuracy of 86 to 99%. Another group at the University of Washington, USA, has developed a way of detecting a toxic form of amyloid in the blood, which can detect Alzheimer's disease with 98% accuracy. A diagnosis opens the door to emotional, practical, legal, and financial advice and support. It also gives a person access to treatment to manage their symptoms and care. A diagnosis can give people affected by dementia the opportunity to plan for the future and make practical arrangements. Importantly, a diagnosis helps a person with dementia understand what is happening to them and how to manage and live well with their condition. You may have heard that a number of trials testing new treatments for Alzheimer's disease have failed, and we believe this might be because we are treating people once the condition has progressed too far. The people that I have interviewed to date have told me that that has been the barrier to finding cures and treatments is they have not been able to discover anything to date that can be used in the beginning or earlier stages of the disease. And one of the reasons I've discussed before is because it's so difficult to differentiate between it actually being a brain disease or just part of the normal aging process. Research funded by Alzheimer's— by the Alzheimer's Society shows that changes in the brain associated with dementia may actually begin up to 15 years before the symptoms begin. If we can detect people who will go on to develop dementia and enter them into trials testing new treatments at the very earliest stages, treatments might be more effective. In fact, recent trials tested drugs in people with early Alzheimer's disease are having positive results. There is a second reason early diagnosis is important in bringing new treatments to the people who need them most. Today, we still don't fully understand what may trigger the changes in the brain that ultimately cause dementia. If we could identify people who will go on to develop dementia At this very early stage, we may be able to understand more about what triggers these changes, but as of this episode, there is no information that will help us in that realm. Ultimately, this could help us develop new treatments and prevent these changes from happening. According to the article that I read, that I am quoting from at the www.alzheimers.org.uk, there are right now 3 novel ways to diagnose dementia in the early stages. And while they have made considerable progress towards earlier diagnosis, We know right now that there is still so much more to do. The Alzheimer's Society is supporting research across the UK to find a way to identify people with dementia as early as possible using a number of innovative techniques. Professor Jeff Parker at UCL is leading work to develop a faster way of carrying out accurate MRI scans to diagnose Alzheimer's disease, so they are more cost-effective than CAT scans, which are currently cheaper but unfortunately less detailed. Number 2, Dr. Dennis Chan and his team at the University of Cambridge are exploring how we could use virtual reality technology alongside other clinical tests to assess the memory and behavior of people at risk of Alzheimer's disease. And then in another project, Dr. Timothy Ritman is looking to see if a brain scanning technique that measures the connections between different brain areas can be used to detect rarer types of dementia. So this is the progress that we have to date made in diagnos— in dementia diagnosis. The Alzheimer Society has been funding research to improve diagnosis for over 30 years. Their researchers at University College London have used MRI, or magnetic resonance imaging, to show how the The brain shrinks with dementia. This is now recommended in NICE clinical guidelines for the diagnosis of dementia. Other work at Newcastle University has shown imaging techniques can help differentiate between Alzheimer's disease and Lewy body dementia, which is important to guide management of the disease. Since the start of this work in 2012, the national recorded diagnosis rate rose from 33% in 2012 to 66% in 2017. However, this has now dropped to 62.5% in December of 2022 after a drop during the COVID-19 pandemic. They are working hard to encourage the government to address this issue. We must find a way to improve diagnosis and support the development of new treatments in parallel so we can maximize the chances that these new treatments will slow down or even stop the progression of dementia. I was told by the Alzheimer's Association that they recently that there are currently over 300 clinical trials going on testing new treatments, drugs for Alzheimer's disease, but they're in clinical trials. To date, we still do not have the answer. So, that is going to conclude the episode for today. And, you know, we just really need to talk about all of this because it does take very specialized knowledge and training to know how to effectively respond to the situations that will arise with a damaged brain. We've got to avoid any situation from escalating into the extreme one, the catastrophic reaction. And as we've talked about on almost every episode, no amount of reasoning can talk the person who is experiencing many of these symptoms out of their belief. So, we must rely on alternative strategies to manage them. Again, 90% of people with dementia will display the behavioral impulses that typically accompany brain disease. Isn't that reason enough to be prepared? I really want to thank you again for listening today. We have so much more to cover in the upcoming episodes, and I really want to provide you with information that you will find helpful You are so cool and valuable throughout this journey. Remember, dementia awareness is every day, and kindness is the ability to speak with love, listen with compassion, and act with patience. And these are all very necessary attributes to have in order to outlast Alzheimer's disease. This program can be found on our website at passionateworldtalkradio.com under the shows tab and on YouTube at PWTR. You can also search for us on YouTube. You can find me on Facebook by searching for Lisa Skinner Author, and you can find my books on Amazon. Also, If you're listening to this on YouTube or if you got here through our social media page, please leave your comments or questions and I'll do my best to address them. Or feel free to send me your comments, questions, or suggestions on what type of topics you'd like me to cover on this weekly show. Send them to dementiawhisperer1@gmail.com. I will genuinely, as always, look forward to receiving your thoughts and ideas. And in the meantime, take care of you. Talk to you all next week.