What Is 'Childhood Alzheimer's'?

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"Childhood Alzheimer’s" is a casual name that refers to two rare conditions: Niemann-Pick disease type C (NPC) and Sanfilippo syndrome. Unlike the name might infer, it’s distinct from the forms of Alzheimer’s disease, which typically affects people who are above 65 years old. NPC and Sanfilippo syndrome is sometimes referred to as "childhood Alzheimer’s" because many of their symptoms are similar to those of Alzheimer’s disease. 

NPC is a condition in children marked by progressive dementia. Early symptoms also include difficulty with coordination and speech. Sanfilippo syndrome is a metabolic disorder that can cause brain damage. Damage to the brain can cause symptoms such as difficulty walking, eating, or swallowing, similar to Alzheimer’s disease.

Both conditions belong to a group of disorders known as lysosomal storage disorders. They are rare disorders affecting between 1 in 40,000 and 1 in 60,000 people.

Symptoms of Childhood Alzheimer’s 

Niemann-Pick disease type C (NPC) and Sanfillipo syndrome share some similar symptoms. Both conditions can affect children as young as a few months old. Symptoms will be more visible and easy to detect in children four years old and older. A child with childhood Alzheimer’s will exhibit symptoms that typically affect their memory, coordination, and communication skills. Some of the most identifiable symptoms include:

  • Decline in motor skills, such as walking 
  • Difficulty concentrating 
  • Having slurred speech or being unable to speak
  • Decline in muscle tone 
  • Blinking rapidly 
  • Slow intellectual development 
  • Behavioral challenges 
  • Seizures 
  • Difficulty seeing or hearing 

With NPC, the following symptoms are unique to the condition: 

  • Undefined muscle tone 
  • Respiratory infections 
  • Odd eye movements 
  • Cognitive decline 
  • Difficulty eating 

Sanfilippo syndrome also has a set of symptoms that makes it distinguishable from other lysosomal storage disorders. They include:

  • Slightly coarse facial features 
  • Joint issues 
  • Skeletal abnormalities 
  • Slightly enlarged livers 
  • Larger heads
  • Pouching around the belly button 

Identifying Childhood Alzheimer’s 

It can be challenging to diagnose childhood Alzheimer’s in the first few years of your child’s life, even when they may already have developed the condition. Both conditions become more detectable in children 4 years old and above.

Because both conditions are so rare, your child’s doctor will likely go through and dismiss a long list of other conditions that could be responsible for your child’s symptoms. Unfortunately, this process can also lead to a delay in diagnosis and, as such, a delay in treatment. 

If your child’s doctor suspects either of these conditions, they will likely carry out genetic testing to confirm their diagnosis. Only around 1 in 70,000 babies is diagnosed with Sanfilippo syndrome.

The most effective way to get ahead of disorders such as these is to monitor your child’s development closely, especially in earlier years. It’s advisable not to dismiss any unexplainable symptoms your child might exhibit, no matter how minor they appear. 

It’s also possible for either condition to be identified and diagnosed during pregnancy. Prenatal screening tests can reveal whether your baby’s lysosomes are functioning correctly.

Causes of Childhood Alzheimer’s 

Lysosomes make up the part of your cells that helps your body to break down carbohydrates and lipids. In people with lysosomal storage disorders, their lysosomes don’t work correctly, causing a build-up of fat in parts of the body, including the brain. When this happens, it can cause organs where fat built up to malfunction and eventually die. 

It’s not entirely clear what causes lysosomal storage disorders to develop in children. The leading theory is that genetics play a key role in developing these conditions. Parents with carrier genes for either condition could pass it on to their children even though they don’t have the condition.  

Treatment for Childhood Alzheimer’s 

Unfortunately, both Niemann-Pick disease type C (NPC) and Sanfillipo syndrome are rare and often fatal diseases. Research is still ongoing to find a possible cure and effective treatment for these conditions.

Both conditions are progressive, which means a child with either condition will continue to develop worsening symptoms as they age. Treatment for this condition currently focuses on finding ways to make your child as comfortable as possible as they age.

A team of specialized and skilled healthcare providers can help manage symptoms that affect speech, cognition, and coordination.

Coping with Childhood Alzheimer’s 

It’s crucial to support your child with either NPC or Sanfillipo syndrome to improve the quality of their everyday life. Although the diseases may be fatal, there are ways to make a child with either of these conditions feel as comfortable as they can in the time they have with you. 

  • Get your child a physical therapist to help build muscle strength and cope with muscle weakness. 
  • Both conditions cause difficulty swallowing eventually. It’s crucial to stay on top of your child’s diet as this happens to prevent nutritional deficiencies.
  • A speech therapist can help with declining communication skills. 

A Word From Verywell

As a quick recap, there’s no medical condition known as "childhood Alzheimer’s." It’s also not a type of Alzheimer’s disease. It’s a moniker that refers to two conditions: NPC and Sanfillipo syndrome. Both conditions of which are rare lysosomal storage disorders. 

While the conditions that make up childhood Alzheimer’s may be fatal, the life expectancy of a child with any of these conditions is usually about 20 years. In some cases, with adequate care and management, a child with either of these conditions could live for up to 30 years.

6 Sources
Verywell Mind uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
  1. Cleveland Clinic. Lysosomal storage diseases & disorders.

  2. NORD (National Organization for Rare Disorders). Lysosomal storage disorders.

  3. Boston Children’s Hospital. Niemann-pick Disease Type C

  4. National Library of Medicine. Mucopolysaccharidosis Type III. January 1, 2020

  5. Zelei T, Csetneki K, Vokó Z, Siffel C. Epidemiology of Sanfilippo syndrome: results of a systematic literature review. Orphanet J Rare Dis. 2018;13(1):53.

  6. Effective Health Care (EHC) Program. Enzyme replacement therapy for lysosomal storage disorders

By Toketemu Ohwovoriole
Toketemu has been multimedia storyteller for the last four years. Her expertise focuses primarily on mental wellness and women’s health topics.