[1] Horizons: Understanding Dementia

Dementia Horizons | Workshop 1 | Understanding Dementia

Video Module 1 Transcript

Let's start by ensuring you clearly understand what the term Dementia means. Dementia itself is not a disease. This may be new to you. This may also be confusing: if it's not a disease, what is it?

Dementia is a common use description and acts as a comprehensive umbrella term for a set of symptoms caused by one or more underlying diseases or disorders. This is a lot to take in, so let's explore the term "umbrella" in a bit more detail.

Let's consider the umbrella term "flowers." There are numerous types of flowers. They vary in color, size, and shape; have been assigned scientific names; and each variety sets the timing for when buds turn into flowers. Examples might be roses, lilies, carnations, tulips, and many more. They're all slightly different, but still all flowers. The same holds true for Dementia, which again is an umbrella term. There are over 100 different types of disorders and conditions that may present themselves as Dementia. Each type or cause of Dementia will have its own uniqueness, its own way of expressing itself in the person.

We could also compare the term Dementia to the umbrella term "cancer." In medical circles, like Dementia, there are scientific terms for cancer. The overarching scientific term for the field is oncology, like Dementia. There are many different types or causes of cancer: lung cancer, breast cancer, melanoma, leukemia, et cetera. Each type of cancer is different. Not all cancers are related to one another, and each type of cancer has particular symptoms, treatments, and possible outcomes based on the person themselves, very similar to Dementia.

Different types of Dementia generally express a particular cluster or group of symptoms. Some symptoms are recognizable immediately, while others may be a bit more subtle, and we'd consider those as clues. Some symptoms may appear first, and others may follow later or be less severe in one cause than another.

When taken together, these cognitive symptoms are officially known as a syndrome, which is commonly called Dementia. In the medical world, the various causes of Dementia, like cancer, are labeled with a more scientifically sounding term: major neurocognitive disorder. What qualifies a condition to rise to the level of a major neurocognitive disorder, in essence, Dementia?

• One: there is evidence of substantial cognitive decline from a previous level of cognitive performance.

• Two: the symptoms are sufficient to interfere with living independently.

• Three: the symptoms do not occur exclusively due to a case of delirium.

• Four: the symptoms are not primarily attributable to mental disorders, for example, a major depressive disorder, bipolar disorder, or schizophrenia.

Because of cellular and structural changes in the brain, the disease or disorders that underlie the syndrome of Dementia can significantly impact a person's ability to perform everyday tasks and activities, making the person less independent and requiring help from others to get through the day.

If there are significant cognitive changes, you may notice the following, more obvious symptoms:

• Someone having difficulty understanding what others are saying, a difficulty that is not related to hearing loss.

• Trouble using language, writing, or difficulty retrieving the right words or names of familiar objects or people.

• Changes in short-term memory: it may be hard to hold on to new information, prompting repeated questions or statements.

• Inappropriate reasoning and poor judgment.

• Difficulty comprehending visual surroundings and mixing up colors, patterns, and shapes.

In addition, because the brain directs all aspects of our bodily functions, changes in muscle or motor ability may occur, including how one walks, controls one's bowel and bladder, and even swallows. As you now have learned, the symptoms that create the syndrome of Dementia are usually much more than memory loss. If one is aware and paying close attention, there are many clues to cognitive changes that are worth investigating with your healthcare provider, especially if they seem unusual, inappropriate, or excessive.

Some more subtle clues include withdrawing from conversations or public gatherings, inappropriate laughing or crying, swearing, disinhibition or aggression, sleep issues or vivid dreams where the person physically acts out their dreams, apathy, hallucinations, or even a slight tremor. And ask yourself, are these changes in behavior, personality, movement, and thinking persistent, or getting worse?

Unfortunately, at this time in our scientific understanding, Dementia is by definition progressive, and many of the underlying causes do not have a cure, so let's pause and recognize that some information is sensitive and challenging to hear and absorb. You are not alone. However, your journey is unique to you or the person living with Dementia. Getting educated, like you are now, and support is essential for this journey.

Okay, let's take a break. Please pause the video now to digest all you have learned so far. When you're ready to move on, restart the program.

Welcome back. Let's continue. Dementia is found in countries worldwide and has no political or wealth boundaries. Everyone who has a brain is at risk, but it is more prevalent in older adults because age is the number one risk factor. I want to stress that Dementia is not an average expectation of aging. While it is expected that age is the number one risk factor, and generally people live longer, it is never normal. Dementia can also occur in children due to over 70 rare genetic disorders, and when it starts in adults 65 years of age or younger, it is called young-onset Dementia.

Let's take a moment to talk about a condition called mild cognitive impairment, or MCI. It is not considered Dementia. MCI is a modest decline in one or more cognitive abilities noticeable to the person, family, and friends. However, these minor changes do not generally interfere with day-to-day activities and the ability to live independently. It is a stage between the expected age-related decline in memory and thinking, and the more severe decline that takes place with Dementia.

Some people living with MCI for a variety of reasons revert to their more expected baseline or their version of normal. To the casual observer, it may seem as if the person had their Dementia reversed or cured. This conclusion would be highly suspect. A far more practical explanation is that their cognitive impairments were caused by a treatable condition or that they made significant changes to their environment or lifestyle, which improved their overall brain health. That said, it's true that some people living with MCI will go on to develop Dementia.

Now let's explore the five leading causes of Dementia. The first is Alzheimer's disease, a common form of Dementia characterized by abnormal protein deposits in the brain. The disease is named for Dr. Alois Alzheimer, who, in the early 1900s, first identified the hallmark pathology of a buildup of a sticky residue of beta-amyloid plaque between neurons, along with misfolded proteins called tau, which results in destructive tangled thread-like strands inside the structure of neurons. The first patient to be diagnosed by the doctor was a woman named August Dieter. After her death at the age of 55, Dr. Alzheimer examined her brain and reported his findings.

One point to make here is that most people do not realize that scientific discoveries now point to the fact that Alzheimer's disease, as well as each of the other common forms of Dementia we're about to discuss, have subtypes. In essence, there's more than one type of Alzheimer's, for example. But that does not mean that all other causes of Dementia are related to Alzheimer's disease. That belief is medically incorrect, and all too often, people unknowingly misspeak and say Alzheimer's and related Dementias when they are referring broadly to Dementia or major neurocognitive disorders.

Using just the word Dementia, especially in the non-medical realm of everyday use, usually works best as an umbrella term and is the most inclusive way to respectfully bring together all forms of Dementia. Said another way, Alzheimer's may cause Dementia, but not all causes of Dementia are Alzheimer's.

One of the first classic clues of Alzheimer's disease is short-term memory loss. For example, a person will ask the same question over and over again, forgetting that others had answered them just minutes ago. A part of the brain, the hippocampus, responsible for recording new information and storing it in our working memory, starts to shrink. This critical structure loses volume and mass and becomes less functional, hindering the person's ability to store new information.

A second cause is vascular dementia, also called, in more medical terms, cerebrovascular disease. This occurs with reduced blood flow to the brain, often due to mini-strokes or other vascular issues. A common feature is a difficulty processing information and planning, and a step-like progression of impairment.

Lewy body Dementia is a third major cause. It is named for Dr. Frederick Lewy, who discovered microscopic malformed proteins in the brain that create abnormal deposits or bodies that affect thinking, behavior and mood. Vivid dreams, loss of motor control and hallucinations are common clues. The damaged brain proteins which contribute to the causes of Lewy body Dementia also occur in Parkinson's disease, and the two diseases are often considered two ends of the same spectrum.

Frontotemporal Dementia, FTD, also known as frontotemporal degeneration, is a fourth cause affecting the brain's front and sides. This leads to significant and unusual personality, behavior, movement, and language changes. They can be socially inappropriate, impulsive, and lack emotional connections or empathy.

The fifth significant condition is what we call mixed Dementia. This is a combination of Dementia pathologies such as Alzheimer's disease and vascular Dementia co-occurring.

Each type or cause of Dementia shows slightly different changes in brain tissue and cognitive functioning. You may notice that a person may appear fine or normal from the outside, but fundamental changes occur within their brain cells and tissues. These changes can only be detected through advanced medical testing. To diagnose the root cause or causes, doctors are now combining in-person interviews and family histories with various screening tools and, if warranted, many different types of advanced brain scans and psychiatric and neuropsychological testing, as well as blood and spinal fluid tests, and may even include genetic testing.

And yet, even after a diagnosis and despite the changes that come with Dementia, we are here to tell you that the quality of remaining life can be good and meaningful. But this takes work. It will require a willingness of family and friends to gain new knowledge and communication skills. As you engage with a person with Dementia, it's important to remember they cannot control what is happening to their brain. Their behaviors are not deliberate or manipulative. Seeing the person you love, who may look unchanged on the outside, exhibit challenging or unexpected behaviors can be emotionally difficult. However, the underlying truth is that they are undergoing profound neurological transformations and need your love and compassion.

If you notice any changes in your loved one's cognitive abilities, it's essential to consult with a healthcare professional. Timely identification and intervention of potentially reversible causes of cognitive impairment can substantially affect their well-being. While some conditions can be treatable, we also need to acknowledge a complicated truth. Most conditions underlying Dementia are unfortunately progressive and fatal. This can be a lot to absorb. Not all the information we share will be easy to hear. It will take time for the head and the heart to connect.

Now, what are the key stages of Dementia? There are three main stages of Dementia, early, middle, and late. In the early stage of Dementia, individuals may exhibit subtle but noticeable changes in cognitive function. Memory lapses and difficulty recalling names or words become apparent. Routine tasks may take longer to complete, and organizational skills may decline. While these changes may be subtle, they can impact daily life. Individuals may also experience shifts in mood or personality, such as increased irritability or anxiety.

Despite these challenges, individuals in the early stage of Dementia often maintain some level of independence, and may still engage in familiar activities. Early intervention support and understanding are crucial during this phase, to enhance the quality of life for both the individual and their caregivers. This is a necessary time to learn, identify resources, and plan for future changes and support.

In the middle stage of Dementia, cognitive decline becomes more pronounced, and individuals require increased assistance with daily activities. Memory loss intensifies, and individuals may struggle to recognize familiar faces or places. Communication becomes more challenging with difficulties in expressing thoughts and understanding language. Behavioral changes, such as restlessness or distress, may become more apparent, and individuals often need assistance with basic tasks like dressing, eating, and personal hygiene. Mobility may be affected, leading to challenges in walking and balance.

As a care partner, you must make greater adaptations to provide a safe and supportive environment. Middle-stage Dementia marks a critical period for you to expand your knowledge and seek additional support to navigate the evolving complexities of care.

In the late stage of Dementia, individuals experience a significant decline in cognitive and physical functioning. They rely on others for daily care, including eating, dressing, and toileting. Communication becomes severely limited with minimal or no verbal abilities. Mobility is often lost, leading to a reliance on a wheelchair or bed. Swallowing difficulties may arise, increasing the risk of aspiration, which means food or fluid is inhaled into the lungs. Changes in behavior and personality persist. That said, the person at their very core remains. Some will say their soul remains. It is up to the people who surround them, care for them and love them to learn how to connect in different ways, such as music and touch.

As the brain function continues to decline, individuals in the final stage of Dementia require attentive and compassionate end-of-life care. This stage emphasizes the importance of prioritizing comfort, sensory communication, and respecting the individual's final wishes, focusing on providing support and dignity during their last moments. Amidst all these changes and stages, the ability to receive love remains.

Thank you for taking the time to become more knowledgeable. A clearer understanding of Dementia is essential in creating a compassionate, informed, and loving path forward. Again, thank you for joining me on your journey.