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Early Onset Dementia: What You Need to Know

Dementia is a term that describes a group of symptoms affecting memory, thinking, and behavior. It is usually associated with older adults, but did you know that it can also affect younger people? In this blog post, we will explore what early onset dementia is, what causes it, how it is diagnosed, and how it can be managed. We will also answer some frequently asked questions and provide some resources for further information and support.

What is early onset dementia?

Early onset dementia (also called young onset or younger onset dementia) is any form of dementia that affects people under the age of 65. According to the Alzheimer’s Disease International, about 1 person in every 1000 below the age of 65 develops dementia. This means that there are around 300,000 to 360,000 people with early onset dementia in the United States, and about 6.4 million people worldwide.

Early onset dementia can have a significant impact on the person’s life, as well as their family, friends, and caregivers. It can affect their work, finances, relationships, and daily activities. It can also cause emotional and psychological distress, as well as stigma and isolation.

What causes early onset dementia?

There are many different types and causes of dementia, and the same is true for early onset dementia. Some of the most common forms of early onset dementia are:

  • Alzheimer’s disease: This is the most common cause of dementia in general, and also affects about 5% to 6% of people with early onset dementia. It is caused by the buildup of abnormal protein fragments called amyloid plaques and twisted fibers called tau tangles in the brain, which damage and kill brain cells. Alzheimer’s disease usually progresses slowly and affects memory, language, and reasoning skills.
  • Vascular dementia: This is the second most common cause of dementia, and accounts for about 20% of early onset dementia cases. It is caused by problems with the blood supply to the brain, such as strokes, mini-strokes, or narrowing of the blood vessels. Vascular dementia usually progresses in a stepwise manner and affects attention, planning, and problem-solving skills.
  • Frontotemporal dementia: This is a group of rare disorders that affect the frontal and temporal lobes of the brain, which are responsible for personality, behavior, and language. Frontotemporal dementia accounts for about 10% to 15% of early onset dementia cases, and usually affects people in their 40s and 50s. It can cause changes in mood, impulsivity, social skills, and speech.
  • Lewy body dementia: This is another rare disorder that affects about 5% of people with early onset dementia. It is caused by the buildup of abnormal protein clumps called Lewy bodies in the brain, which affect movement, cognition, and perception. Lewy body dementia can cause fluctuations in alertness, hallucinations, tremors, and stiffness.
  • Genetic (familial) Alzheimer’s disease: This is a very rare form of Alzheimer’s disease that is caused by mutations in one of three genes (APP, PSEN1, or PSEN2), which can be inherited from a parent. People with genetic Alzheimer’s disease usually develop symptoms in their 30s, 40s, or 50s, and have a 50% chance of passing the mutation to their children. This form of Alzheimer’s disease accounts for less than 1% of all cases, but about 11% of early onset cases.

There are also other less common causes of early onset dementia, such as Parkinson’s disease, Huntington’s disease, Creutzfeldt-Jakob disease, and HIV-associated dementia.

How is early onset dementia diagnosed?

Diagnosing early onset dementia can be challenging, as the symptoms can be mistaken for other conditions, such as depression, stress, or menopause. It can also take a long time to get a referral to a specialist, as many health care providers may not suspect dementia in younger people.

To diagnose early onset dementia, a doctor will usually do a comprehensive assessment that includes:

  • A medical history, including family history, medications, and lifestyle factors.
  • A physical examination, including blood tests and other investigations to rule out other possible causes of the symptoms.
  • A cognitive assessment, including tests of memory, attention, language, and executive functions.
  • A neuropsychological assessment, including tests of mood, personality, and behavior.
  • A brain imaging scan, such as MRI or CT, to look for any structural or functional changes in the brain.
  • A genetic test, if there is a suspicion of genetic Alzheimer’s disease.

The diagnosis of early onset dementia can be a difficult and emotional process, both for the person and their loved ones. It is important to seek support and information from professionals, such as neurologists, psychiatrists, psychologists, social workers, and counselors, as well as from organizations, such as the [Alzheimer’s Association] or the [Alzheimer’s Foundation of America].

How is early onset dementia managed?

There is no cure for early onset dementia, but there are ways to manage the symptoms and improve the quality of life of the person and their caregivers. Some of the strategies include:

  • Medications: There are some medications that can help with some of the cognitive and behavioral symptoms of dementia, such as cholinesterase inhibitors, memantine, antidepressants, antipsychotics, and mood stabilizers. However, these medications may have side effects and interactions, and may not work for everyone. It is important to consult with a doctor before taking any medications, and to monitor their effects and dosage regularly.
  • Non-pharmacological interventions: There are also some non-drug interventions that can help with some of the symptoms and challenges of dementia, such as cognitive stimulation, physical exercise, music therapy, art therapy, reminiscence therapy, and relaxation techniques. These interventions can help to maintain or enhance cognitive, emotional, and social functioning, as well as to reduce stress and agitation.
  • Lifestyle modifications: There are also some lifestyle changes that can help to cope with dementia, such as eating a balanced diet, staying hydrated, getting enough sleep, avoiding alcohol and tobacco, and managing other health conditions, such as diabetes, hypertension, or cholesterol. These changes can help to prevent or delay the progression of dementia, as well as to improve overall health and well-being.
  • Support and education: One of the most important aspects of managing early onset dementia is to seek and receive support and education from various sources, such as family, friends, health care professionals, support groups, online forums, and advocacy organizations. These sources can provide information, advice, guidance, emotional support, practical assistance, and social interaction, which can help to cope with the challenges and changes of dementia, as well as to plan for the future.

Frequently asked questions

Here are some of the common questions that people may have about early onset dementia:

  • Q: How common is early onset dementia?
  • A: Early onset dementia is uncommon, but not rare. It affects about 1 in 1000 people under the age of 65, which means that there are around 300,000 to 360,000 people with early onset dementia in the United States, and about 6.4 million people worldwide.
  • Q: What are the signs and symptoms of early onset dementia?
  • A: The signs and symptoms of early onset dementia vary depending on the type and cause of dementia, but they generally include problems with memory, thinking, behavior, and daily functioning. Some of the common signs and symptoms are:
    • Forgetting important things, such as names, dates, or appointments
    • Repeating the same questions or stories
    • Having trouble following instructions or solving problems
    • Getting lost or confused in familiar places
    • Having difficulty finding the right words or understanding what others are saying
    • Misplacing or losing things frequently
    • Making poor or impulsive decisions
    • Showing changes in personality, mood, or behavior, such as becoming more irritable, withdrawn, or aggressive
    • Losing interest or motivation in activities that used to be enjoyable
    • Having trouble with vision, movement, or coordination
  • Q: What are the risk factors for early onset dementia?
  • A: The exact risk factors for early onset dementia are not fully understood, but some of the possible factors are:
    • Family history: Having a parent or sibling with early onset dementia, especially genetic Alzheimer’s disease, increases the risk of developing the condition.
    • Genetics: Having a mutation in one of the three genes (APP, PSEN1, or PSEN2) that cause genetic Alzheimer’s disease, or having certain variants of the APOE gene that increase the risk of Alzheimer’s disease in general, increases the risk of developing early onset dementia.
    • Other medical conditions: Having certain medical conditions, such as Down syndrome, autoimmune diseases, infections, or head injuries, may increase the risk of developing early onset dementia.
    • Lifestyle factors: Having certain lifestyle factors, such as smoking, drinking, obesity, or physical inactivity, may increase the risk of developing early onset dementia.
  • Q: How can I prevent or delay early onset dementia?
  • A: There is no sure way to prevent or delay early onset dementia, but there are some steps that may help to reduce the risk or slow down the progression of the condition, such as:
    • Getting regular check-ups and screenings for any health problems, such as diabetes, hypertension, or cholesterol, and following the doctor’s recommendations for treatment and management.
    • Taking medications as prescribed, and reporting any side effects or interactions to the doctor.
    • Eating a healthy and balanced diet, rich in fruits, vegetables, whole grains, lean proteins, and healthy fats, and low in salt, sugar, and saturated fats, and drinking plenty of water and fluids.
    • Exercising regularly, at least 150 minutes of moderate-intensity physical activity per week, or as recommended by the doctor, and including both aerobic and strength exercises.
    • Quitting smoking, or reducing the amount of cigarettes, and avoiding exposure to secondhand smoke.
    • Limiting alcohol intake, or avoiding it altogether, and seeking help for any substance abuse problems.
    • Keeping the mind active and stimulated, by engaging in mentally challenging activities, such as reading, learning, puzzles, games, or hobbies, and by staying curious and open-minded.
    • Maintaining social connections and interactions, by keeping in touch with family, friends, and community, and by joining support groups, clubs, or volunteer activities, and by seeking help for any mental health issues, such as depression, anxiety, or loneliness.
    • Planning ahead and preparing for the future, by discussing the diagnosis and the wishes of the person with early onset dementia with their loved ones and their health care team, and by making legal, financial, and care arrangements, such as advance directives, power of attorney, wills, and trusts.

Resources and support

Early onset dementia can be a challenging and overwhelming condition, both for the person and their caregivers. However, there are many resources and support available to help them cope and live well with dementia. Some of the resources and support are:

  • The [Alzheimer’s Association], which is the leading voluntary health organization in Alzheimer’s care, support, and research. It provides information, education, advocacy, and services for people with dementia and their caregivers, such as a 24/7 helpline, online tools, local chapters, support groups, care consultations, and clinical trials.
  • The [Alzheimer’s Foundation of America], which is a national nonprofit organization that provides optimal care and services to individuals living with Alzheimer’s disease and related illnesses and to their families and caregivers. It offers information, education, programs, and services, such as a national toll-free helpline, webinars, social media, newsletters, publications, and events.
  • The [Younger Onset Alzheimer’s Disease Coalition], which is a coalition of organizations that advocate for the needs and rights of people with younger onset Alzheimer’s disease and related dementias and their families. It works to raise awareness, educate, and influence policy and legislation on issues affecting this population, such as health care, disability, employment, and retirement.
  • The [Young Dementia Network], which is a network of people and organizations that share a common interest in improving the lives of people affected by young onset dementia in the United Kingdom. It aims to increase understanding, improve services, and promote research on young onset dementia. It offers information, resources, events, and opportunities for involvement.


Early onset dementia is a rare but serious condition that affects people under the age of 65. It can have various types and causes and can affect different aspects of the person’s life. However, with proper diagnosis, management, and support, people with early onset dementia and their caregivers can cope and live well with dementia. If you or someone you know is experiencing symptoms of early onset dementia, do not hesitate to seek help and advice from a health care professional. Remember, you are not alone, and there is hope. 

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