Early-Onset Dementia

Dementia occurs when a person experiences cognitive decline that leads to loss of the ability to function independently in social or work settings. Because it's rare in younger people, it can be overlooked or misdiagnosed when it strikes in middle age or young adulthood.

The Memory Disorders Division at Massachusetts General Hospital provides diagnostic and treatment services for all types of dementia. The Frontotemporal Disorders Unit within the Memory Disorders Division specializes in young-onset and atypical dementias.

What Is Early-Onset Dementia?

Dementia can be devastating to both a patient and their spouse, family, and friends. It usually affects people over 65. When someone younger than 65 suffers from dementia, it's considered early-onset dementia, or young-onset dementia.

People affected by early-onset dementia are usually in their 40s and 50s, but early-onset dementia is increasingly being diagnosed as early as age 30. Rates of early-onset dementia and Alzheimer's diagnoses are three times as high as they were in 2013. The reasons for this increase are unclear and may be because of more frequent diagnoses rather than an actual rise in disease rates.

Early-Onset Alzheimer's vs. Dementia

Dementia describes a group of symptoms affecting cognitive function, but it isn't a specific disease or disorder. Alzheimer's disease is the most common brain disease that causes dementia, but there are many other brain diseases that cause dementia. A diagnosis of dementia does not necessarily mean the person has Alzheimer’s disease since there are many other causes.

Early-Onset Dementia Symptoms

The initial symptoms of early-onset dementia are similar to those of dementia in older adults, including:

• Problems with memory, such as forgetting important events or conversations.
• Difficulty learning new information.
• Trouble reasoning, solving problems, or understanding tasks.
• Poor judgment.
• Difficulty finding words or communicating.
• Getting lost.
• Mood or personality changes.

As the condition progresses, these symptoms worsen, and some people will experience new symptoms, such as:

• Increasing memory loss.
• Growing difficulty in thinking through the steps of routine daily activities.
• Confusion (such as mistaking a loved one for someone else from your past or not understanding where you are).
• Depression or anxiety.
• Agitation or aggression.
• Believing things that are not real or seeing things that are not present.
• Difficulty with balance or coordination.

What Causes Early-Onset Dementia?

Dementia at any age can result from many different disorders, such as:

• Alzheimer's disease
• Other neurodegenerative diseases such as frontotemporal degeneration or Lewy Body Disease
• Cerebrovascular diseases such as stroke or atherosclerosis of brain blood vessels
• Alcohol or other substance abuse
• Rare genetic disorders such as Huntington's disease or Creutzfeldt-Jakob disease

The causes of early-onset dementia are generally the same as those for dementia in older people. However, younger individuals with dementia are more likely to have conditions such as frontotemporal degeneration or Huntington’s disease compared to older individuals with dementia.

Early-Onset Dementia Risk Factors

Studies have identified many risk factors for early-onset dementia, including:

• Mutations in certain genes
• The epsilon 4 variant of the APOE gene
• Diabetes, especially in men
• Drug and alcohol abuse
• High blood pressure
• History of heart disease
• History of stroke
• Lower overall cognitive function
• Poor hearing
• Social isolation
• Vitamin D deficiency

Early-Onset Dementia Diagnosis & Treatment

When someone under 65 develops the initial symptoms of cognitive decline—especially if they're much younger than 65—doctors may not consider the possibility that a disease leading to dementia is the reason. However, getting an accurate diagnosis as soon as possible can help patients access proven or experimental treatments and make necessary plans and life adjustments to manage their condition.

How Is Early-Onset Dementia Diagnosed?

There's no single test for early-onset dementia. Instead, a doctor will make a diagnosis after assessing your symptoms, discussing your medical history, and performing a variety of dementia tests. These may include:

• Interviews with the person experiencing symptoms and someone who knows them well to discuss changes in thinking abilities, mood/behavior, personality, movement, vision, hearing, and other functions.
• Review of existing medical conditions and medications.
• Physical, neurologic, and psychiatric examination.
• Mental status tests.
• Brain scans, which usually include an MRI and sometimes various types of PET or other scans.
• Neuropsychological assessment.
• Blood, spinal fluid, or other tests to rule out other conditions.
• Specific molecular biomarker tests to diagnose Alzheimer’s disease or Lewy body disease.

Early-Onset Dementia Treatment

Treatment primarily focuses on improving symptoms and quality of life as much as possible. If the diagnosis is Alzheimer’s disease, the person may be a candidate for new disease-modifying therapies. Some treatments for dementia include:

• Drugs that adjust certain neurotransmitters in the brain to improve symptoms.
• Drugs that lower amyloid plaques in the brain if Alzheimer’s disease is the likely cause of the dementia.
• Psychological support to help manage emotional symptoms.
• Rehabilitative therapies, such as speech-language therapy, to develop strategies to compensate for symptoms.
• Education for the patient and family about symptom management.
• Strategies to promote brain-healthy behaviors, such as aerobic exercise and a healthy diet.

Outlook for Early-Onset Dementia

A diagnosis of early-onset dementia can be overwhelming, but know that you are not alone on this journey. While there is currently no known way to stop or slow the progression of early-onset dementia, preparing for the future can help make the journey easier.

The early stage of the condition, when you can still participate in discussions with a clear mind, is the best time to address the challenges that lie ahead. Speak with friends and family about how you want to manage care and how to prepare financially. You may want to create a living will to clearly dictate what medical decisions you're comfortable with, ensuring there are clear instructions for when you can no longer communicate your wishes.

Couples should discuss the transition from partner to caregiver, and parents will need to decide how to talk to their children about what to expect. All family members may benefit from appropriate psychological support as the condition develops.

At Massachusetts General Hospital, we are here to support patients and their families every step of the way. Our compassionate team provides comprehensive care and resources to help manage the challenges of dementia, offering guidance and support to navigate this journey together.

FAQs About Early-Onset Dementia