Childhood Alzheimers: Understanding This Rare Condition

When you hear the term “Childhood Alzheimer’s” you probably think of a form of Alzheimer’s disease that affects children. However, that’s not actually the case.

Childhood Alzheimer’s isn’t a clinical diagnosis, but rather a name some people use to refer to a couple of different conditions that affect a child’s memory and communication ability.

The symptoms of these diseases can look a lot like Alzheimer’s, but the cause is very different. Both conditions are very rare and are genetically inherited.

What is childhood Alzheimer’s?

Childhood Alzheimer’s is a term used to refer to two different diseases that cause children to have memory loss and other symptoms commonly associated with Alzheimer’s disease.

Childhood Alzheimer’s can refer to:

• Niemann-Pick disease type C (NPC)
• Sanfilippo syndrome or mucopolysaccharidosis type III (MPS III)

Both diseases are what’s known as lysosomal storage disorders. When a child has one of these genetic diseases the lysosomes of their cells don’t function properly.

The lysosomes of cells help process sugar and cholesterol so the body can use them. When lysosomes aren’t working properly, these nutrients buildup inside cells instead.

This causes cells to malfunction and eventually die off. In the case of NPC and MPS III, this cell death affects memory and other brain functions.

This is different from classic Alzheimer’s disease. When an adult has Alzheimer’s, they have too much of a protein called beta-amyloid in their brain. The protein clumps together between cells.

Over time, this interferes with connections in the brain and leads to memory and other problems.

Are childhood Alzheimer’s and childhood dementia the same?

Childhood Alzheimer’s and childhood dementia might sound like they describe the same condition. But just like Alzheimer’s and dementia are two separate conditions in adults, childhood dementia is a separate condition from childhood Alzheimer’s.

Childhood dementia is caused by a group of conditions called neuronal ceroid lipofuscinosis (NCL). When a child has NCL, proteins, and lipids build up in their body and lead to decline.

Like childhood Alzheimer’s, NCL is fatal. Children often die when they’re between 10 and 15 years old.

What are the symptoms?

The first symptoms of childhood Alzheimer’s are brain-related. Children will have trouble with memory and communication. They might have trouble learning new information and might lose motor or other skills they’d already gained.

Symptoms will depend on the child and on whether the child has NPC or MPS III. Common childhood Alzheimer’s symptoms include:

• slurred speech
• loss of ability to speak at all
• shortness of breath
• swelling in the stomach
• yellow tinted skin called jaundice
• difficulty making eye contact
• difficulty following lights or objects with eyes
• difficulty swallowing
• loss of muscle tone and control
• loss of balance
• loss of motor skills
• seizures
• rapid blinking

Children with MPS III might also have:

• insomnia
• hyperactivity
• coarse hair
• large foreheads
• behavioral concerns
• digestive issues

Symptoms can appear at any time between a few months of age and early adulthood in both forms. In most cases, however, symptoms will start to show when a child is between 4 and 10 years old.

Since both NPC and MPS III are degenerative, symptoms will get worse with time.

What causes childhood Alzheimer’s?

Both types of childhood Alzheimer’s are caused by genetics. The diseases are recessive, so both parents need to be a carrier of the gene for a child to inherit the condition.

Children born to parents who both carry the genes that cause childhood Alzheimer’s have a 1 in 4 chance of developing the condition.

Parents pass down genes that are unable to produce the correct protein cells need to work. When the lysosomes of cells can’t work as they should, the body can’t produce the other things it needs to function properly.

Eventually, fats, cholesterol, or sugars will build up in the cells of an affected child. This will lead to a decline in brain and organ function.

How is childhood Alzheimer’s diagnosed?

It can take years to be diagnosed with one of the medical conditions associated with the term childhood Alzheimer’s. These diseases are very rare, so a child may be diagnosed with other, more common conditions first.

It’s important to take your child to regular wellness checkups so that their developmental progress can be monitored, and any delays can be identified as early as possible.

For example, since the early symptoms often affect learning and motor skills, children are sometimes incorrectly diagnosed with learning disabilities, autism, or other developmental disorders.

However, unlike more common conditions, children with NPC or MPS III will develop more symptoms over time as their conditions worsen.

Eventually, they’ll develop symptoms that can’t be explained by their previous diagnosis. This often prompts parents to seek out a new, correct diagnosis.

Children with these conditions often need genetic testing before they get a diagnosis. They might need to visit specialists before there are answers about their condition. Fortunately, testing is getting easier.

Children suspected of having NPC or MPS III used to need biopsies to confirm the condition. Recent developments have allowed for a diagnosis with a standard blood test.

How is childhood Alzheimer’s treated?

There’s no cure for either type of childhood Alzheimer’s, and there have been no proven treatments.

Since there are no treatments for this disease itself, a plan of care will likely focus on the symptoms and making sure the child has the highest possible quality of life.

For example, if a child is having trouble swallowing due to childhood Alzheimer’s, they might benefit from a special diet of food that has been chopped up or pureed for for easier swallowing.

Other professionals, such as physical and occupational therapists, can help with balance, motor skills, and muscle weakness. Speech therapists can help teach them to safely swallow foods and liquids.

Clinical trials

Some families can choose to pursue clinical trials and experimental treatments. Research is currently being done to see if gene or enzyme therapies could be treatments for child Alzheimer’s in the future.

These treatments haven’t been proven or approved by the United States Food and Drug Administration (FDA). However, for many families, the possibility that these treatments could make an impact is worth the risk.

What’s the outlook for children with childhood Alzheimer’s?

Childhood Alzheimer’s is always fatal. Most children with either type die before they’re 20 years old, although in some rare cases children will live into their 30s.

In general, children with MPS III live a little longer, with an average lifespan of between 15 and 20 years old. Children with NPC often die before the age of 10.

Children with symptoms that appear later in childhood tend to have a slower progressing form of childhood Alzheimer’s. They might decline slower than children who showed symptoms as infants or toddlers.

Unfortunately, no matter when symptoms appear, there’s no cure for childhood Alzheimer’s.

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