Early onset dementia is dementia that occurs in people under the age of 65 years. Symptoms can be difficult to recognize but may include changes in behavior, personality, language, and movement.
Dementia is an umbrella term for symptoms that occur due to atypical brain changes, such as Alzheimer’s disease. Symptoms tend to include memory loss and changes in brain function that affect everyday living.
Older age is a significant risk factor for dementia, but the condition can also develop in younger adults. Early onset dementia refers to dementia that occurs in people between ages 18 and 64 years.
This article looks at the symptoms, effects, diagnostic challenges, treatment, support, and outlook associated with early onset dementia.
According to the Alzheimer’s Society, there are several key differences between early onset dementia and dementia in older adults. These include the following:
- Rare types of dementia are more common in younger people.
- There is a broader range of conditions that can cause early onset dementia.
- It is more common to inherit early onset dementia. This form accounts for 10% of cases of early onset dementia.
- Memory loss is less likely to be one of the first symptoms of early onset dementia.
- Problems with coordination, movement, walking, and balance are more common with early onset dementia.
- In many cases of early onset dementia, people do not have any other long-term or severe health conditions.
Early onset dementia occurs in people ages 18 to 64 years. The symptoms can vary more than those in older adults and may include psychiatric, cognitive, and neurological symptoms, such as:
- changes in behavior and personality
- problems with executive function, which can affect a person’s ability to plan, organize, and make decisions
- vision changes
- movement difficulties
- language problems, such as difficulty finding a word
How early onset dementia affects daily life
Early onset dementia may affect many areas of a person’s daily life, such as:
- finding it difficult to focus or concentrate
- having difficulty remembering appointments or how to do things they would usually have no problems with
- having difficulty following conversations
- showing changes in behavior and personality
People may find that early onset dementia affects their work and finances. This may cause worry and uncertainty, as younger adults may be repaying loans or mortgages or have dependent children.
People may also find that relationships change, including those with a partner, children, friends, and family.
In addition, those with early onset dementia may need extra support from those around them. People may not fully understand their condition, as it is relatively rare.
All of these changes may affect a person’s sense of community, identity, purpose, and connection with others.
There can be delays of 3 to 5 years in diagnosing early onset dementia, which is longer than it takes to diagnose later onset dementia. This may be due to the challenges in differentiating early onset dementia from other health issues.
Some challenges in diagnosing early onset dementia include the following:
- Memory loss can be a key early symptom of dementia in older adults, but early symptoms in younger adults are more likely to be behavioral, language, personality, or vision changes.
- It can be difficult to recognize the early symptoms of early onset dementia, and people may attribute them to other causes, such as stress, relationship or work issues, or menopause.
- Early onset dementia is quite rare, so healthcare professionals may have less experience in recognizing the symptoms in younger adults.
Diagnosing early onset dementia may include a range of different tests, including memory and cognition tests, brain imaging scans, blood tests, and lumbar puncture.
Several conditions can cause early onset dementia, including:
Other causes include:
- traumatic brain injury
- alcohol or drug misuse
- motor neuron disease
- HIV
- neurosyphilis
- systemic lupus erythematosus
- autoimmune encephalitis
- heavy metal poisoning
- neurosarcoidosis
- Whipple disease
- thyroid disease
- Wilson disease
- obstructive sleep apnea
Although there is currently no cure for early onset dementia, certain treatments can help manage the condition.
Medications to help manage the symptoms of early onset dementia include:
- cholinesterase inhibitors, such as donepezil, galantamine, or rivastigmine
- memantine
- antidepressants and short-term benzodiazepines for depression and anxiety
- melatonin for sleep disturbances
Psychotherapy and counseling may help support people with the emotional effects and psychiatric symptoms of early onset dementia. In particular, cognitive stimulation therapy may lead to slight improvements in cognition in people with mild to moderate dementia.
Managing any cardiovascular risk factors and making certain healthy lifestyle changes may help slow down cognitive decline with early onset dementia.
Lifestyle changes may include:
- eating a healthy, balanced diet
- staying active
- avoiding or quitting smoking
- limiting or avoiding alcohol
Each person with early onset dementia will require care tailored to them and their specific circumstances and symptoms.
Specialized care may include:
- psychotherapy or counseling
- functional assessment to help modify the home and support daily activities and independent living
- speech therapy
- physical therapy
- home support, such as with cooking and cleaning
- financial management
- social support
- advance care planning
There are some risk factors for early onset dementia that people cannot change, such as genetics, but there are several that are within a person’s control.
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- alcohol use
- smoking
- social isolation
- vitamin D deficiency
- cardiovascular health problems
- depression and anxiety
- sleep problems
Limiting alcohol, eating a healthy diet, and staying physically and socially active may help reduce the risk of early onset dementia.
Support for people with early onset dementia and their families may include a multidisciplinary team of healthcare professionals and support groups.
Organizations such as the Alzheimer’s Association also offer a 24/7 helpline and local resources.
It is important to contact a doctor for any symptoms of early onset dementia. Although there can be many other reasons for symptoms, it is important to find out the underlying cause.
It can help to note down any symptoms a person is experiencing, when they started, and how often they occur. The Alzheimer Society of Canada also provides a symptom checklist that people can fill out and take to their first appointment.
A person can ask for a referral to a specialist in dementia care, such as a neurologist. If a family member has early onset dementia as well, a person may also visit a genetic counselor to check for genetic causes or risk factors.
In most cases, people with early onset dementia live for many years following a diagnosis, with a longer life expectancy than people with later onset dementia. High quality care and management of early onset dementia can help improve quality of life.
Some causes of early onset dementia may be reversible or treatable, including:
- early stages of Wernicke-Korsakoff syndrome
- HIV or neurocysticercosis
- obstructive sleep apnea
- autoimmune encephalopathies, which may respond to steroids
- Wilson disease
Early onset dementia affects people younger than 65 years old.
Symptoms may include changes in movement, personality, and behavior.
If a person has any symptoms of early onset dementia, it is important to consult with healthcare professionals to find out the underlying cause and begin treatment.