Most people think of dementia as something that happens with old age. But some types of Alzheimer’s disease and dementia can affect younger people as early as their 30s.

If you think you or someone you love might be showing signs of an early-onset form of dementia, here’s what you should know.

Causes of Early-Onset Dementia

When dementia appears before age 65, it’s called early-onset dementia or young-onset dementia. Diagnoses in this age group are increasing, but researchers don’t know why. It may be that healthcare professionals are simply getting better at recognizing the symptoms of these types of dementia.

Possible causes of early-onset dementia include:

• Neurodegenerative diseases — These include Lewy body dementia and frontotemporal degeneration, which leads to frontotemporal dementia (FTD).
• Very rare genetic disorders — Rare conditions such as Creutzfeldt-Jakob disease and Huntington’s disease can cause early-onset dementia.
• Vascular problems — Stroke and other conditions that reduce blood flow to the brain can lead to vascular dementia.
• Alcohol and/or substance use — Long-term use may lead to substance-induced cognitive impairment, which can be reversible in some cases.

• Alzheimer’s disease — This is the most common cause of both early-onset dementia and late-onset dementia.

Most cases of early-onset Alzheimer’s disease happen without a clear cause. However, it’s sometimes connected to very specific genetic changes found in a few hundred families around the world. This is called familial Alzheimer’s disease (FAD). FAD is linked to mutations in one of three genes: APP, PSEN1, or PSEN. Symptoms can begin in a person’s 30s or 40s.

If dementia runs in your family, you may already know about it. If so, it’s important to talk with your doctor and a genetic counselor to decide if you want to have genetic testing. The same is true for other rare inherited conditions mentioned above.

Symptoms of Early-Onset Dementia

Early-onset dementia symptoms usually appear in middle age, often in a person’s 40s and 50s. But symptoms can start as early as the 30s. The symptoms are the same as what you would expect in an older person with dementia. Symptoms affect the way people feel and manage their emotions, how well they communicate, and how their brains process information. Certain symptoms of dementia are more common in certain types of dementia.

Early symptoms of early-onset dementia may include:

• Problems learning new material or skills
• Poor judgment
• Getting lost in familiar places
• Forgetting events, conversations, or important information
• Issues with problem solving, understanding, or reasoning
• Trouble finding the right words or expressing themselves
• Changes in personality or mood

Over time, early-onset dementia will progress and different symptoms may appear, such as:

• More aggression or agitation than usual
• New depression or anxiety
• Confusion about time, place, or people
• Trouble completing daily activities with multiple steps
• Seeing things that aren’t there or believing things that aren’t true
• Worsening memory loss
• Difficulty with coordination or balance

Over time, people with early-onset dementia will need more support. They may eventually require help with all daily activities and will not be able to be left alone.

Diagnosing Early-Onset Dementia

Getting an accurate diagnosis of early-onset dementia can be difficult. This is partly because dementia is less common in younger people, so their symptoms are often mistaken for other conditions rather than cognitive decline. Another possible reason is that younger people can be more likely to show unusual symptoms first, rather than memory loss.

Because of this, early-onset dementia may be misdiagnosed as stress, depression, or even a mid-life crisis. For an accurate diagnosis, a referral to a specialist — such as a behavioral neurologist or a geriatric psychiatrist — is very important.

Getting an accurate diagnosis as early as possible is key to getting the right support. You may need to advocate for yourself or your loved one to make sure the right assessments are done.

Most diagnoses start with a primary care doctor. They will listen to your symptoms and may do quick tests to see how well your mind is working. If they suspect dementia, they’ll likely refer you to a specialist.

Specialists can do a more in-depth investigation, which may include:

• Talking to you and your loved ones about cognitive changes
• Memory and thinking tests
• Brain imaging scans, such as MRI or PET scans
• A physical exam
• A neurological exam to check motor skills, balance, and reflexes
• A psychiatric exam
• Lab tests, including blood work, to rule out other conditions
• Genetic tests for rare, inherited conditions
• A review of your medical history and current medications

After these tests, a specialist can diagnose early-onset dementia and may be able to identify the specific cause.

Treatment for Early-Onset Dementia

There are a variety of treatment options for early-onset dementia. These depend on what’s causing the dementia. While there’s no cure for dementia, there are treatments that can help you manage symptoms and maintain quality of life after your diagnosis. Dementia does progress, but the expected course will vary based on your diagnosis.

Treatment options may include:

• Medications that address the specific cause of early-onset dementia
• Therapies that help you make up for skills you’ve lost, such as speech therapy or occupational therapy
• Healthy lifestyle changes such as regular exercise, a balanced diet, limiting alcohol, and avoiding smoking
• Therapy or counseling to support emotional health
• Cognitive stimulation therapy (CST) to improve memory and communication
• Life story work, which helps you tell your story to preserve personal memories and identity for when you don’t remember it all anymore

Support for family members and close friends of those with early-onset dementia is also important. Education about the condition can help loved ones prepare for what’s ahead and make plans for future care.

Getting Support for Early-Onset Dementia

An early-onset dementia diagnosis can be difficult for both the person diagnosed and their loved ones. It can also be hard to find support tailored to younger people.

Your doctor may be able to connect you with support groups for people living with early-onset dementia or related conditions. These groups give you the chance to share experiences with others who understand.

If you or your loved one is in the early stages of early-onset dementia, it can be helpful to work with a lawyer and a financial planner to plan for the future. Planning early allows the person with early-onset dementia to take part in important decisions about finances, care, and future wishes while they’re still able to.

Family counseling can also provide valuable psychological support. It can help spouses adjust to becoming caregivers and guide parents in explaining the condition to children.

Your healthcare provider should be able to connect you with resources and services that can support both you and your loved ones.

Join the Conversation

On myALZteam, people share their experiences with Alzheimer’s disease, get advice, and find support from others who understand.

What has your experience been like with early-onset forms of dementia? Let others know in the comments below.