When a child starts forgetting things, has trouble learning, or loses skills they once had, it can be scary and confusing. These symptoms might point to a group of rare but serious illnesses sometimes called “childhood Alzheimer’s.”

Despite the name, childhood Alzheimer’s isn’t the same as the Alzheimer’s disease that affects older adults. Still, these conditions share some of the same symptoms, such as memory loss and changes in thinking.

In this article, we’ll explain what childhood Alzheimer’s is, what causes it, how it’s diagnosed, and what the affected children and their families can expect. We’ll also discuss resources for caregivers of children with these conditions.

What Is Childhood Alzheimer’s?

“Childhood Alzheimer’s” is an umbrella term that covers several rare genetic disorders that affect how a child’s brain works over time. These conditions damage brain cells, leading to a gradual loss of memory, thinking skills, and basic abilities. Although not the same as adult Alzheimer’s, they cause similar symptoms of dementia — a general term for decline in thinking and functioning.

Childhood-onset neurodegenerative diseases are also referred to as childhood dementia disorders or pediatric dementia syndromes. These conditions affect how brain cells grow, connect, and survive. Over time, healthy brain cells die off, and the brain shrinks or stops developing. This can lead to the loss of important skills, like walking, talking, or recognizing family members. Some children are born with symptoms, whereas others seem to develop normally and then lose those skills later, a process known as regression.

Many of these conditions are progressive, meaning symptoms get worse over time, and there’s no cure. Families often face years of caregiving, medical visits, and emotional stress, especially as children lose abilities quickly in some cases.

How Common Are These Diseases?

About 1 in every 2,900 children is born with a condition that causes childhood dementia. That adds up to around 700,000 children worldwide at any time. While this number may seem large, each specific condition is extremely rare on its own.

Because these diseases are so uncommon, many doctors are unfamiliar with them. This can lead to delays of months or years in getting the right diagnosis. Early symptoms may resemble those of more common conditions, and children may be misdiagnosed with autism spectrum disorder, attention-deficit/hyperactivity disorder (ADHD), or general developmental delays.

Raising awareness is crucial — not only to help doctors recognize symptoms sooner but also to push for more research funding and support services. An earlier diagnosis can give families more time to plan, access specialized care, and connect with support networks. Organizations such as the Childhood Dementia Initiative offer information and updates on medical advances that may benefit families navigating this difficult journey.

What Are the Symptoms of Childhood Alzheimer’s?

The first signs of childhood Alzheimer’s can be easy to miss. Symptoms vary and depend on the specific disease, but the earliest clues often include seizures, speech delays, or the loss of skills. When a child begins to forget or lose abilities they’ve mastered, rather than acquire them more slowly than expected, that can be a red flag for a neurodegenerative condition (a disease that slowly damages the brain and nervous system over time).

You might notice that your child no longer says certain words, has trouble following directions, or seems less interested in people or surroundings. Some children begin to fall behind their peers in development or learning. Others may lose interest in play, get frustrated more easily, or not be able to stay focused. Other early symptoms may include:

• Memory loss
• Language problems
• Behavioral changes
• Slower thinking or processing
• Loss of motor skills (like walking or using their hands)
• Vision or hearing problems
• Sleep problems or disrupted sleep patterns

How Is Childhood Alzheimer’s Diagnosed?

Diagnosing childhood Alzheimer’s usually begins with a visit to a specialist, such as a pediatric neurologist (a doctor who specializes in brain and nervous system conditions in children). They’ll examine your child, ask about their symptoms, and go over your family’s medical history. From there, your child may need tests such as:

• Blood or urine tests to look for signs of certain rare diseases
• Brain imaging, like an MRI or CT scan, to check for brain changes
• Electroencephalogram (EEG) to measure electrical activity in the brain

One of the most important steps is genetic testing to look for mutations (changes) in DNA that may be causing the condition. Because many of these genetic mutations are extremely rare, getting answers can take time — and sometimes more testing. Pinpointing the genetic cause can help confirm the diagnosis and may also make your child eligible for research studies or treatments in development.

What Causes Childhood Alzheimer’s?

Childhood Alzheimer’s is caused by genetic conditions that gradually damage the brain and nervous system. Researchers have identified 170 genetic disorders that lead to childhood dementia, but so far, just 25 have any type of treatment available.

About two-thirds of children with childhood dementia have a condition called an inborn error of metabolism. This means their bodies can’t properly break down or use certain fats, proteins, or sugars. As a result, harmful substances build up in the brain, leading to symptoms of dementia. These diseases fall into several major categories.

Lysosomal Storage Disorders

Lysosomes are like the recycling centers of cells — they help break down waste. When lysosomes don’t work properly, waste builds up and harms brain cells. Lysosomal storage disorders account for about 22 percent of childhood dementia cases and include 44 diseases, such as:

• Batten disease — A group of disorders that cause vision loss, seizures, and progressive loss of skills due to fat and protein buildup in brain cells
• Niemann-Pick disease types A and C — Genetic conditions that prevent the body from properly processing fats, causing them to build up in the brain and other organs
• Sanfilippo syndrome — A condition where the body can’t break down certain sugars, leading to brain damage and severe developmental decline

Mitochondrial Diseases

Mitochondria are the cells’ “powerhouses,” producing the energy cells need to function. When mitochondria are damaged, the brain and muscles, which need a lot of energy, can be severely affected. Mitochondrial diseases make up about 20 percent of childhood Alzheimer’s cases and include:

• Leigh syndrome — A disease that affects brain development and movement, often beginning in infancy
• Mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes (MELAS) — A disorder that causes muscle weakness, seizures, symptoms similar to those of a stroke

Peroxisomal Disorders

Peroxisomes help the body break down certain fatty substances. When peroxisomes don’t function correctly, harmful fatty acids can build up and affect the brain. Peroxisomal disorders are found in about 9.5 percent of children with dementia-related conditions. Examples include:

• X-linked adrenoleukodystrophy — A group of conditions that affect brain development, vision, hearing, and muscle tone
• Zellweger spectrum disorder — A disease that damages the protective covering of nerve cells in the brain and spinal cord

Other Genetic Disorders

About 27 percent of childhood dementia cases don’t fall into a single group. These other rare genetic disorders include:

• Cockayne syndrome — A condition that causes poor growth, vision and hearing loss, and early aging symptoms
• Juvenile Huntington’s disease — A form of Huntington’s disease that begins in childhood or adolescence and causes movement problems, behavior changes, and cognitive decline
• Rett syndrome — A disorder that causes severe problems with language, movement, and learning after early childhood development

Can Childhood Alzheimer’s Be Treated?

Right now, there’s no cure for childhood Alzheimer’s. Current treatments can’t stop or reverse brain damage, but some therapies can help manage symptoms and improve a child’s comfort and quality of life. Treatment usually focuses on supportive care, which may include:

• Therapies to support daily functioning — Physical and occupational therapy can help maintain movement and independence. Speech therapy may assist with communication and swallowing.
• Feeding support — Nutritional support, including feeding tubes, may be needed if a child has trouble swallowing.
• Behavioral and sleep care — Psychologists can help address behavior challenges and sleep disturbances.
• Palliative care — This care focuses on easing symptoms and improving comfort and quality of life, especially as the disease progresses.

Some families may also have the option to participate in clinical trials. These studies test new treatments and may offer early access to cutting-edge therapies. Your healthcare team can give you the latest information on clinical trials that you may be able to take part in.

What Is the Life Expectancy With Childhood Alzheimer’s?

Children who have a form of childhood dementia typically live to a median age of 9 years — meaning half will die before age 9 and half will live beyond it. Although some children live into their teens and beyond, only about 29 percent reach adulthood. About 10 percent live to age 50.

Life expectancy depends on several factors, including the specific disease, how early symptoms appear, and how quickly the condition progresses. In some children, signs start in infancy and worsen quickly. In others, symptoms begin later and move more slowly.

As the disease worsens, it damages the brain’s ability to control vital functions like swallowing, breathing, and heart rhythm. Many children eventually die from complications such as severe seizures, pneumonia, or heart or lung problems.

The statistics are heartbreaking, but there is hope. Researchers around the world are working on new treatments that may one day improve both survival and quality of life for these children.

How To Care for Someone With Childhood Alzheimer’s

Caring for a child with a dementia disorder means adapting to a constantly changing set of needs. As the disease progresses, children often lose the ability to walk, talk, eat, and interact. They may also experience seizures, sleep disturbances, or changes in behavior. Daily caregiving may involve support with feeding, mobility, hygiene, and communication.

A supportive care plan should include:

• Regular visits with a pediatric neurologist or other specialists familiar with neurodegenerative conditions
• Physical, occupational, and speech therapy to help maintain comfort and function
• Nutritional support, such as special diets or feeding tubes
• Seizure management and medications to ease symptoms such as pain and muscle stiffness

It’s just as important to take care of yourself. Supporting a loved one with childhood Alzheimer’s can be emotionally and physically overwhelming. Many people experience anxiety, grief, or caregiver burnout over time. Organizations such as the Childhood Dementia Initiative, Global Genes, and the Batten Disease Support, Research, and Advocacy Foundation offer resources, connections to care teams, and other supportive services.

Taking breaks, speaking with a counselor, or joining a support group isn’t selfish — it’s essential. When you care for your own well-being, you’re equipped to support your child with strength, love, and resilience.

Talk With Others Who Understand

On myALZteam, the social network for people living with Alzheimer’s and their loved ones, members talk about a range of personal experiences and struggles.

Are you a caregiver for a child with childhood Alzheimer’s? What resources have you found most valuable? Share your thoughts below, or post a comment on your Activities page.