Sundown Dementia, also known as behavioural variant Frontotemporal dementia (bvFTD). It is a rare type of dementia that brings with it a unique set of symptoms that often go undiagnosed. It is estimated that upwards of 70% of individuals with FTD present with the “Sundown Syndrome”. Where affected individuals become withdrawn and less communicative as the day progresses. Unlike other FTD, the symptoms in Sundown Dementia manifest with varying degrees of severity across the lifespan.

Coping with Sundowning

Initial symptoms, may start as lapses in judgment and a few tangents. Often disappear without a trace as dementia progresses. And by the time a patient is placed in a care facility. They may be completely unaware that they have the condition.

However, the lack of awareness itself may not always be a sign of the condition itself. While patients may not be aware. That they have grown “grey matter dead” due to a single incident in their early years. Mild cognitive impairments that last for months or years have a greater likelihood of being misdiagnosed. As “old age” or “adult-onset” dementia, both of which are somewhat common in the Sundown Dementia population.

As the symptoms that individuals develop while the dementia is present lessen. It’s common for them to not be noticed by care staff or other medical professionals. This is in stark contrast to patients with other FTD. Who often present with the gradual onset of symptoms, and “grey matter wall” refusing to cooperate with the brain.

The progression and relapses of this well-studied and narrowly defined condition. Are often remarkable and can take on an almost mythical quality. As both people and researchers struggle to keep abreast of the literature.

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Sundown Dementia

One prominent area of contention. Is that early symptoms of Sundown Dementia. May not even be present until decades after initial signs and symptoms first manifest. This means that there may be Sundown individuals. Who die in their 20s or 30s and never realize they have the condition. This leads to people being misdiagnosed as having Alzheimer’s decades after their dementia has progressed and irreversibly harmed their brains.

While awareness of and access to medical care is essential for anyone with a condition like Sundown Dementia. Knowing the prevalence of the condition can also help make purposes of screening and intervention more efficient. While most studies assessing the condition. Focus on identifying the prognosis for individuals with dementia after diagnosis. Setting realistic goals for care plans and determining when to intervene. Are important for Kernan’s team, as well as patients themselves.

Relapsing and developing symptoms are recognized as early signs of dementia. And these can happen in patients with and without the Sundown variant of FTD. Additionally, people with FTD who become ‘grey matter deprived’ from lack of functioning. May require more invasive care than their peers in order to survive. Which places additional burdens on a healthcare system already lacking resources to accommodate the varying severity of the condition.

It is also referred to as cognitive variant Alzheimer’s disease (CVAD), cerebrovascular disease, or cerebral hypometabolism syndrome.

The Sundown Dementia Checklist is an indispensable tool for the early diagnosis of this disease. This checklist, based on the Cantril Self-Report Scale. Assesses cognition and emotional function, social functioning, lifestyle habits, and personal qualities that may influence the progression of the condition. Sundown dementia is a self-fulfilling prophecy of neglect and deterioration of all major life functions.

Dementia Checklist

Functional Features: Although the disease often presents with mentally unresponsive behaviours, they are not often outwardly evident or observable. Affected individuals can have difficulty remembering things, as well as failing to stop rather than pick up after themselves. Many find it difficult or impossible to complete daily activities, such as driving. Overall, they are less concerned with motor skills.

Utilization of Memory: Memory function is generally normal, with the addition of disorganization and forgetfulness. Individuals with Sundown dementia struggle with verbal recall and understanding of long-term, complex tasks.

Being Unaware of Time: Cognition cannot be accurately assessed by using best-selling forms of paper and pencil tests. Rather, tests must be conducted digitally, such as computers, video interpreters, and robotics systems. Particularly concerning for individuals with Sundown dementia are tests of maintaining a correct class schedule (EDSS) — an exam that requires an individual to maintain a strict schedule of activities, even while impaired. Without the ability to feel present in the moment, the individual may find themselves attending class and assigned homework, rather than dutifully carrying out assigned tasks.

Lack of Awareness or Concern for Self or Others: The individual may become socially isolating and unwilling to interact with friends and family, particularly family of origin. Particularly disturbing and concerning is a lack of concern for his or her own well-being, which may manifest itself as a victim-blaming mindset or as an increased ruthlessness in self-harm. Aggressive outbursts are often exclamations of frustration or anger exhibited by affected individuals.

Social Functioning: It is essential to socialize safely. This is especially difficult for individuals with Sundown dementia, as they often do not understand the necessity of remaining engaged in phone or computer-based conversations involving others, as well as the importance of maintaining any interests or hobbies.

Care Needs

Personal Characteristics: The cognitive symptoms of Sundown dementia, which is often mistaken for Alzheimer’s disease, mimic various personality traits, including delusions, hallucinations, or excessive withdrawal. It is very common for affected individuals to get lost in their work, engaging in bizarre, fascinating projects, or wander aimlessly. This can lead to personalities resembling sociopaths, with feelings of grandiosity and real-life impotence.

This makes it challenging to directly diagnose and monitor disease progression.

Thankfully, scientists and clinicians are making great strides in understanding and treating the condition which is slowly but surely pushing the field of dementia research forward. Recent findings from the Yerkes Regional Centre for Research of Alzheimer’s Disease in Atlanta, Georgia, have focused predominantly on just that; identifying and treating behaviors, like overeating and sleep disruption, that may signal the onset of bvFTD.

Much of what we think we know about the division between Alzheimer’s and dementia is based on misdiagnoses due to frequent inconsistencies in symptom presentation. In general, dementia is a progressive disorder characterized by loss of cognitive control and characteristic features, such as impaired communication, mobility, and processing of new information. In contrast, Alzheimer’s Disease is a brain dysfunction syndrome that impairs all aspects of mental functioning.

Unfortunately, many early symptoms in both conditions mimic those of other, more common conditions. For instance, both are commonly associated with tremors and functional difficulties, yet there are significant discrepancies in how these two conditions manifest. This subtle yet persistent misdiagnosis means that true bvFTD and Alzheimer’s patients may present with similar symptoms and simultaneously receive nowhere near the attention needed to help identify the more serious disease.

Alzheimer’s disease

One particular aspect of Alzheimer’s disease that is often overlooked is the loss of subnetworks of the brain that serve as the basis for memories, learning, and judgment.

Basically, anything that is not directly involved in memory can be made to fade as the condition progresses, age spots are often the first to go.

Therefore in individuals with FTD, Alzheimer’s symptoms may mimic any number of functional deficiencies, from sleep disturbances to memory lapses. Often people will experience these with great confusion and without any obvious cause.

Luckily, these infrequent but significant changes in cognition and behaviour begin to narrow as the disease progresses, usually with the development of late-onset Alzheimer’s like behaviors. This means that, as scientists continue to push more and more avenues of investigations toward identifying biomarkers and interventions, patients and families may stand to benefit from novel and unconventional treatments targeting behaviours, much like a light in the darkness.

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