Lisa Skinner provides a number of ways that you can increase the awareness of caregivers about Dementia and Alzheimer’s disease. Skinner’s original thinking and counter-intuitive solutions provide family members, spouses, children, caregivers and others with the tools they need to effectively manage the symptoms of brain disease.
As Americans age, many will require senior living and, as they age in place, many will develop a dementia-causing illness like Alzheimer’s disease. Senior care at one point does become dementia care, so it is important to understand as much as you can about dementia, related behaviors, communication difficulties and how to successfully intervene.
Truth, Lies & Alzheimer’s – Its Secret Faces by authors Lisa Skinner and Douglas W. Collins is a concise guide for caregivers navigating the heartbreaking challenges of having a loved one diagnosed with Alzheimer’s disease or other dementia. Everyone has a story about Alzheimer’s. It’s time to start the conversation about Alzheimer’s and stop treating it like it’s only “Family Business.” #starttheconversation
You will learn techniques like joining their reality, reminiscence therapy, and techniques for the stranger in the mirror, aggression, aphasia, wandering and sundowning symptoms commonly encountered with Alzheimer’s disease.
Readers of the book and workbook will develop a roadmap to return to what matters. Caregivers and family members will feel empowered to work through the difficulties of the disease and enjoy their remaining time with their loved one(s). Our Continuing Education Webinars provide great information on dementia and nutrition, depression, communication and behaviors.
TRUTH, LIES & ALZHEIMER’S – THE ONLINE WEBINAR
OVERVIEW OF THIS SIX WEEK COURSE
ALL REGISTERED ATTENDEES RECEIVE BOTH THE BOOK & THE WORKBOOK
| KEYNOTE SPEAKER | SEMINARS | ONLINE WEBINARS | ONE-ON-ONE COACHING |
Birds In the Mattress
In our first story, Birds In the Mattress, we explore how Mrs. Walker experienced delusions, hallucinations, and paranoia, which are common behaviors with dementia. Unfortunately, no amount of reasoning can talk the person experiencing the delusion out of their belief, so we must rely on alternate strategies to manage these behaviors. According to the Alzheimer’s Association, approximately one out of three Alzheimer’s disease sufferers will develop paranoia or suspiciousness. Because people with brain disease suffer from impaired reasoning, they may easily misinterpret others’ intentions, and have difficulty understanding what is communicated to them. Their ability to separate fact from fiction may also be impaired. Additionally, problems with memory and misperception can generate suspicious and paranoid thoughts, like we saw in “Birds in the Mattress” where Mrs. Walker believed people wanted to harm her. In a person living with dementia, the ability to perceive things the same way you do diminish and will affect that person’s judgment both visually and conceptually. Their level of confusion will increase over time, because he/she is losing the ability to make sense of what his/her senses take in. Consequently, this can produce several adverse reactions such as fright and combative behavior.
Auld Lange Syne
Alzheimer’s disease and other dementias gradually diminish a person’s ability to communicate. Communication with a person with Alzheimer’s requires patience, understanding and good listening skills. In Sam’s story, Auld Lange Syne, it is important to remember what caused the changes in his ability to communicate. Sam’s initial caregivers mistook his decreased social engagement for a decline in cognitive health. This caused him to spiral further into social isolation. The right treatment environment can provide a sense of purpose and belonging. A big part of the solution is identifying activities that patients enjoyed during their prime. Helping them engage in those activities does wonders for their self-esteem and provides much needed sensory stimulation. A well-coordinated program which incorporates these elements can decrease challenging behaviors, and most importantly, fulfills the patients’ need to feel like they’re living a meaningful life. A person living with a brain disease that causes dementia will slowly change over its course as the disease progresses. The person you once knew will begin to fade and will eventually disappear. Sometimes, personalities change and become different, and the control that the person once had over his or her life will erode. It’s extremely difficult for family members and caregivers to understand and accept these changes; however, knowing that these changes are inevitable, and being prepared for them, will make your journey with your loved once much easier to bear. You will eventually become the interpreter of your loved one’s signs, symptoms, and behaviors. In this story, we take a look at how helping a person living with dementia can preserve their very basic human need of purpose and dignity which can make all the difference to enhancing their quality of life.
The Stranger in the Mirror
The phenomenon of Stranger in the Mirror is an example of a hallucination, a common behavior seen with dementia. In Harold’s story, The Stranger in the Mirror, the behavior ended up being relatively harmless, and his wife, Nancy, found the situation entertaining, because Harold was clearly having fun with his new imaginary friend. However, in other cases, people can be frightened by the hallucination or even perceive it as a threat. We will emphasize the importance of being aware of the Stanger in the Mirror phenomenon so, as caregivers, you, too, will know what signs and behaviors to look for to put your loved one at ease if this situation were to arise. The brain is at the center of our thought processes and is central to our lives. It takes in information from our daily experiences and enables us to make sense of our world. Our memories are the threads that sew our lives together in sequence and continuity. When our memory begins to fail, the tie to our life unravels, as we saw with Harold in “Stranger in the Mirror” when he did not recognize his own reflection in the mirror. The first memory problems with Alzheimer’s disease typically occurs with recent, or short-term, memories. The person has difficulty recalling the events that have happened most recently; however, their long-term memories can remain intact far into the disease. A person experiencing lost memories may feel confused when the world as they knew it starts disappearing, and their past and present collide. This can elicit feelings of fear and anger, as well as unveil uncharacteristic behaviors of that person.
The Bedroom Litigator
With an overall prevalence of about 30%, agitation is the third most common neuropsychiatric symptom (NPS) in dementia, after apathy and depression. Confusion is one of the leading causes of anger and aggression in Alzheimer’s and dementia sufferers, as we will see in our current session, The Bedroom Litigator. Confusion can be triggered by lost trains of thought, mixed up memories, or a sudden change in the environment, such as a change from one caregiver to another. As we see in Tom’s story, treatments like Reminiscence therapy help patients cope with the loss of their core selves. For Alzheimer’s patients like Tom, the best we can do is keep them safe, engaged, and comfortable in the last years of their lives. This story is an example of common behaviors that can be triggered when a person’s short- term memory is so diminished that they become disoriented to time and place, and believe they are living in a different period of their life. Tom’s disease also led to personality changes such as irritability, anxiety, and an obsession with an idea that wasn’t real. Trying to change his reality would have been futile for his caregivers, and it would have only exacerbated the situation. Success in Tom’s story was about finding a creative way to “join his reality.” Your loved one may have a different preoccupation. But the lesson is that with a little insight into what’s driving that preoccupation, and a little creative troubleshooting, you can find a way to put your loved one at ease. Our memories keep us plugged into the work and play of our lives – what we do and how we do it. It also allows us to understand how we fit into the social fabric because our memories store key habits, beliefs, and values that make us unique and vital. Dementia profoundly affects a person’s ability to keep their world in order, and therefore impacts the way they live in that world and how they get along with other people in it. Most people become confused when situations go beyond the limits of their thinking ability. As the disease progresses, the mind’s ability to avoid confusion declines, because they lose the normal filters and protections they once had when their brains were healthy.
A Divided Family
During the middle stages of Alzheimer’s disease, people may experience depression, anxiety, irritability and repetitive behaviors. As the disease progresses, other changes may occur, including sleep changes, physical and verbal outbursts, and wandering. The Alzheimer’s Association estimates that as many as 60 percent of people with dementia will wander. In our story, A Divided Family, Anne getting lost while taking the dog for a walk is an example of wandering, one of the most common behaviors seen with Alzheimer’s disease and related dementias. Wandering itself isn’t a negative behavior if done in a safe environment. But as we saw in this story, wandering put Anne in danger because she was able to leave the security of her home, and then couldn’t communicate who she was or where she was supposed to be. In this story, we also take a look some of the intense emotions family members feel while dealing with the behaviors and symptoms of the disease. Anger and frustration are very common. These emotions are usually an unconscious response to not knowing how to handle a situation, and/or fears associated with losing the loved one. Family members may also deny the existence of the disease and its symptoms; again, a coping mechanism for dealing with the uncertainty of the situation. Family members may also feel guilty about surrendering control of their loved one’s care to professionals. Even though they may know it logically, it may be hard for them to accept emotionally that trained caregivers can provide the safety and stimulation that will allow their loved one to thrive.
Sundowning refers to a set of behaviors, in which the person with dementia is disoriented and confused, typically occurring at the end of the day (although the behaviors can actually occur at any time). Sundowning can cause a variety of behaviors, such as confusion, anxiety, aggression or ignoring directions, like we see in our current session, Sundowning. The person suffering from sundowning can experience dramatic changes in personality and behaviors including pacing, wandering, suspiciousness, disorientation, confusion, and agitation. Another common behavior illustrated in our sundowning story is elopement. They typically seek to exit their current environment and have a purpose or agenda to get somewhere. A person exhibiting sundowning behaviors can be relentless in their pursuit of what they are looking for. They may even believe they are being kept against their will and may become angry, anxious, and/or aggressive. The most important thing to recognize about sundowning is that the behaviors and symptoms are part of the disease and not the intentional behavior of the person. The behaviors displayed when a person is sundowning can usually be effectively managed with a learned set of skills, which we will explore. Agitation, anxiety, fear, aggression, and anger are examples of some of the common behaviors that will surface when a person with dementia is “sundowning.”
The Pill Box
As Alzheimer’s disease and other related dementias destroy brain cells, a significant symptom, known as “aphasia” — which is losing the ability to speak and to understand speech may develop. Aphasia worsens as the disease progresses. It becomes harder to remember the right words and process what others are saying, as seen in our story, The Pill Box. Harvey suffered from Aphasia, the loss of ability to communicate. There are many types of Aphasia, and it can present itself in several ways. The condition results from damage to the communication centers of the brain. It was evident in our story that Harvey was very high functioning cognitively. He understood everything that was being said to him. However, he had difficulty finding the correct words to use, as well as articulating his thoughts. A more cognitively impaired person would not be able to recognize what a pill box was, and what it was used for, as Harvey did. What connects us with others in the world, is our ability to communicate. It’s the ability to get and give information, as well as express our needs and feelings. Using language is the most common form of communication; however, there are many other forms of communication that we can use effectively, such as body language, facial expressions, and gestures. The ability to communicate is gradually lost with dementia. The first problem is typically with finding the right words that fit into what they are trying to tell you. Their brains might know what they want to say, but they lose the ability to articulate it. This decline in the ability to communicate can lead to frustration and emotional outbursts. Additionally, the ability to understand what’s being said also declines, so we will explore several ways in which we can more effectively communicate with people suffering from dementia and aphasia.
Our story, Face Value, exemplifies several behaviors that are common with dementia, including agitation and combativeness, wandering/nighttime walking, trailing, hoarding/collecting, and “painting.” It is important to understand that as Alzheimer’s disease continues to destroy memory and mental skills, it also begins to alter emotions and behaviors. Approximately 70 to 90 percent of Alzheimer’s patients eventually develop behavioral symptoms. Agitation is one of the most common behaviors seen with dementia and can be displayed in a variety of ways, including restlessness, pacing, fear, and/ or in changes in body language or facial expressions. Agitation can also easily escalate to aggression if not responded to appropriately. A behavior should be considered a problem if it has a negative impact on the person afflicted or on others around him/her. The behaviors can be triggered by one or more of several contributing factors such as environmental issues like sensory overload, too much noise, or even the temperature of a room, which we will take a close look at in this chapter. There are so many underlying reasons why a person might be reacting. The important thing is to keep in mind that the reactions, or behaviors, are the only way a person with dementia may be able to communicate that there is a problem that needs to be addressed. That said, one of the most important principles of this chapter, Face Value, is just that: You must be careful not to take the behaviors at face value or rush to judgment about what’s causing them. Through process of elimination, the underlying reason can be uncovered. Normal thinking abilities allow us to control our emotions, adjust our responses, judge the difference between a big deal and a little deal, but with dementia, that ability is gradually lost.
Yes, dogs do get dementia! Our story, Doggie Dementia, highlights the symptoms associated with dementia, regardless of whether they’re exhibited by people or our pets. Many of us consider our pets family, so it can be painful to see them decline mentally as well. Cognitive decline in dogs is like what we see in people. Canine Cognitive Dysfunction primarily affects memory, learning and comprehension. Brain function is affected by the physical and chemical changes that happen with the aging process. In dogs, there is no breed disposition. The dog’s age is the biggest predictor. Dogs affected by Canine Cognitive Dysfunction can exhibit the following symptoms and behaviors: Wandering and pacing, acting “dazed” or staring off into space, getting lost in familiar places, general confusion and disorientation, being restless for no apparent reason, not responding to commands they once knew, and becoming withdrawn or disinterested in daily activities. Is this sounding all too familiar? I’m grateful that my experience helping families facing brain disease allowed me to recognize similar symptoms in Oliver. Doggie dementia, otherwise known as Canine Cognitive Dysfunction Syndrome (CCDS), is very similar to Alzheimer’s disease in humans; therefore, we will look at many of the similarities we see between dogs and humans to discuss how to best manage the behaviors and how to avoid “kicking the dog.”
The Changing Station
Dementia – once it has been officially diagnosed – does not go away, but the symptoms can come and go and the condition can manifest itself differently depending on the person. The symptoms and signs of Alzheimer’s or dementia progress at different rates. There are different stages, but it doesn’t ever “go away”. Martha’s story, The Changing Station, is a prime example of someone whose challenging behaviors were an attempt to communicate a need. Your loved one may exhibit a different challenging behavior. For Martha, she was trying to communicate a deep-seated need to be maternal by yelling out. The need doesn’t have to make sense or be rooted in reality. The lesson we can learn from Martha is that sometimes it takes creative troubleshooting to identify an activity that fulfills a need, and thus allows the challenging behavior to subside. In this story, we will explore several ways to identify and then fulfill a need that may exist in a person who cannot tell you what that need may be. We will be discussing the 5 W’s to help us better assess the root cause of the behavior(s).
Maryanne: Fold. Tuck. Repeat.
A person with Alzheimer’s may do or say something over and over — like repeating a word, question or activity — or undo something that has just been finished. In most cases, he or she is probably looking for comfort, security and familiarity. REPETITIVE BEHAVIORS are demonstrated by people with dementia because they may be unable to remember recent events or actions (short-term memory loss). They may also repeat words or gestures as a means to soothe themselves. The behaviors may be an attempt to communicate a need or physical discomfort.
As we saw in our story, Maryanne, people with dementia can seem perfectly fine one moment, and in the next they can be anxious and detached from reality. This can be one of the most troubling behaviors for families and caregivers to deal with. The difficulty stems from not wanting to see our loved one uncomfortable, and from not knowing how to handle a problem that only exists in their mind. Losing touch with reality is a normal progression of the disease. This is due to the short-term memory diminishing throughout the course of the illness. Therefore, we will explore why “joining their reality” is the most effective approach. The essence of the approach is to acknowledge their reality, and then divert their concern. Additionally, Maryanne also exhibited repetitive behaviors. Fold, tuck, repeat! Your loved one may repeat words, activities, questions, or stories. They may also pace around a room. These types of behaviors are often a coping mechanism for dealing with stress or fear, but can be annoying for caregivers and family members. Our brains process information in different ways; through abstract thought or through concrete thought, and we rely on these thought processes every day. This ability is lost early in the disease. This means that many of the concepts we rely on to live in this world no longer have meaning for a person living with dementia, so we will discuss ways in which we, as caregivers and family members, can help our loved ones make better sense of the world they are living in.
Bringing Mom Home
As is evidenced in our COVID-19 reference materials, the number one impact that the pandemic has had on people with dementia in memory care facilities is isolation and loneliness. Studies have shown that the isolation has triggered a faster decline in cognitive health due to loneliness and not being connected with families. Dianne’s story, Bringing Mom Home, is a poignant story about the Vassar family, who was faced with the difficult decision of how their mother would live out the remaining years of her life after her Alzheimer’s disease diagnosis, and then complicated by the impact that the COVID-19 pandemic was having on care environments, and how they came to their decision. Today, many families facing brain disease must consider the impacts of Covid when making decisions about a loved one’s care options.
The entire care plan landscape is pivoting from traditional care options as a direct result of the pandemic. We will discuss the risk factors of the various options, so you, too, can make an informed decision regarding your loved one’s care options.