Frontotemporal Dementia – How many people suffering with it in the USA – Causes and symptoms

Frontotemporal dementia (FTD) is a group of progressive brain disorders that primarily affect the frontal and temporal lobes, regions responsible for personality, behavior, language, and movement. Unlike Alzheimer’s, which typically strikes later in life, FTD often manifests in younger individuals, between the ages of 40 and 65. This early onset casts a long shadow on families and communities, leaving a devastating impact on individuals and their loved ones.

Prevalence and Impact of Frontotemporal Dementia – How Many People Are Suffering from FTD

Estimating the exact number of people living with FTD in the USA is challenging due to its diverse presentation and underdiagnosis. However, research suggests a significant presence:

• UCSF Health: estimates around 250,000 Americans living with FTD.
• Alzheimer’s Association: reports that 50,000 to 60,000 individuals may have behavioral variant FTD and primary progressive aphasia.

These figures highlight the significant burden FTD places on the healthcare system and society. The economic cost of caring for FTD patients in the USA is estimated to be over $4 billion annually, with emotional and social costs remaining incalculable.

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Causes and Symptoms

Unlike Alzheimer’s, which is primarily linked to amyloid plaques and tau tangles, the causes of FTD remain diverse and complex. Several genetic mutations, protein abnormalities like Pick bodies, and environmental factors are implicated, but the exact mechanisms remain under investigation.

As an early-onset condition, frontotemporal dementia often manifests between the ages of 45 and 65, while it can start sooner and manifest later in 20–25% of cases. It is the most prevalent dementia with an early onset.

According to the International Classification of Diseases, a sickness can cause a problem that affects a person’s mental and behavioral health. Typical social display patterns include yelling, vulgar speaking, dissociation from family, obsessive buying condition (oniomania), and an inability to manage conduct, attitude, and temperament. It is stated that several years before presenting to a neurologist, changes in behavior or language deficiencies started gradually and progressed.

The symptoms of FTD are as varied as its causes. They can be broadly categorized into three main types:

• Behavioral variant FTD: characterized by personality and behavioral changes like apathy, impulsivity, social disinhibition, and loss of empathy. Real-life experiences paint a poignant picture. As one caregiver shared, “My husband, once the life of the party, now barely recognizes me. He’s become withdrawn and rude, and his once-sharp wit has been replaced by apathy.” (Source: The New York Times, “A Younger Form of Dementia”)
• Primary progressive aphasia: affects language abilities, leading to difficulties with speaking, writing, and understanding language. Imagine a world where words become elusive, sentences crumble, and expressing oneself becomes a struggle. This is the reality for many with primary progressive aphasia. (Source: National Aphasia Association, “Living with Primary Progressive Aphasia”)
• Movement disorder FTD and later conditions: presents with symptoms similar to Parkinson’s disease or ALS, including muscle stiffness, tremors, and difficulty walking. This overlap can complicate diagnosis and delay appropriate care.

Challenges and Hope to Cope with Frontotemporal Dementia Symptoms

Currently, there is no cure for FTD, and its progression is relentless. However, supportive care, including speech therapy, occupational therapy, and behavioral management, can help individuals cope with symptoms and maintain quality of life for as long as possible.

These are not to be confused with the initial signs of more prevalent forms of dementia. For instance, daily memory issues are frequently among the early symptoms of Alzheimer’s disease. Many patients with early-stage FTD are still able to recall recent experiences.

None of the frontotemporal subtypes have a particular therapy. Certain drugs have the capacity to lessen sadness, agitation, and/or irritability. The goal of these therapies should be to enhance quality of life.

It is certain that frontotemporal dementia will worsen with time, and each person’s rate of deterioration is unique. Frontotemporal dementia patients exhibit muscular weakness and balance issues for many years, making them dependent on wheelchairs or unable to get out of bed.

difficulties with eating, chewing, moving, and managing the bladder and/or intestines can result from these muscular difficulties. The physical abnormalities associated with frontotemporal degeneration eventually result in lung, urinary tract, and/or skin infections.

Research into FTD is ongoing, with promising avenues exploring genetic therapies, biomarkers for early diagnosis, and potential treatments to slow progression. While the shadow of FTD may loom large, the dedication of researchers, caregivers, and families fighting for a brighter future offers a glimmer of hope.

Additional Characteristics

There may be overlap in the clinical characteristics in later stages of FTD. Individuals who suffer from FTD frequently experience compulsive behaviors and binge eating. Changes in dietary preferences (cravings for more carbs and sweets), consuming inedible items, and stealing food from others are frequently linked to binge eating behaviors. Eating patterns in FTD are linked to atrophy (wasting) in the right ventral insula, striatum, and orbitofrontal cortex, according to recent results from structural MRI study.

Individuals with FTD have severe deficits in working memory and executive functioning. Most lose the ability to execute tasks that need for intricate planning or sequencing. Frontal release indicators are a set of basic reflexes that are frequently triggered in addition to the typical cognitive impairment. The palmomental reflex often manifests first among these frontal release indicators, occurring very early in the course of the illness, while the palmar grip reflex and rooting reflex manifest later.

Rarely, individuals with the motor neuron illness amyotrophic lateral sclerosis (ALS) may develop frontotemporal dementia (FTD). When FTD is added to ALS, the prognosis is poorer and the survival time is reduced by around one year.

Sources:

• Alzheimer’s Association at National Center for Biotechnology Information: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6472481/
• UCSF Health: https://www.mayoclinic.org/diseases-conditions/frontotemporal-dementia/symptoms-causes/syc-20354737
• Johns Hopkins Medicine: https://www.hopkinsmedicine.org/psychiatry/specialty-areas/geriatric-neuro/frontotemporal-dementia
• The New York Times: https://www.nytimes.com/2022/01/17/well/mind/dementia-alzheimers-younger-adults.html
• National Aphasia Association: https://aphasia.org/aphasia-resources/primary-progressive-aphasia/
• Wikipedia: https://en.wikipedia.org/wiki/Frontotemporal_dementia
  • Alzheimer’s Society: https://www.alzheimers.org.uk/about-dementia/types-dementia/frontotemporal-dementia

This article provides a starting point for understanding FTD. If you suspect you or someone you know may be exhibiting symptoms, please consult a healthcare professional for proper diagnosis and personalized care. Remember, you are not alone in this journey.

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