Early-Onset Dementia

Dementia is commonly thought of as a condition that affects only older people, but there are many people under the age of 65 who also develop symptoms of dementia, which is referred to as early-onset, or young-onset, dementia. Although there is no cure for early-onset dementia, treatment includes medication, therapy, and specialist support.

What is early-onset dementia?

Dementia is a degenerative condition that affects the brain, resulting in symptoms that impact memory, thinking, and communication, as well as potentially affecting mobility, mood, and behavior ^[1].

Early-onset dementia, also known as young-onset dementia, refers to dementia that emerges before the age of 65 ^[2]. As with dementia in older adults, there are several types of early-onset dementia, including Alzheimer’s disease, vascular dementia, frontotemporal dementia, and dementia with Lewy bodies, as well as some rarer types of dementia ^[3].

Research suggests that early-onset dementia occurs in between 2-10% of people diagnosed with dementia, and the prevalence of the various types of dementia differs in younger people ^[5][6].

Alzheimer’s disease is the most common type of dementia in both older and younger people, affecting over 60% of people with dementia over the age of 65, but only around a third of people with dementia under 65 ^[3][6].

Rarer types of dementia are more common in younger people. For example, frontotemporal dementia occurs in around 2% of people with dementia over 65 but is around 6 times more likely to occur in younger people ^[4].

As such, the causes and symptoms tend to differ between older and younger people with dementia, due to the differences in the prevalence of specific dementia types. Early-onset dementia often causes more symptoms related to mood, behavior, and mobility, as well as having a potentially more severe impact on aspects such as employment, financial security, and family ^[1][7].

Symptoms of early-onset dementia

Generally, symptoms of early-onset dementia are the same as those that occur in older adults. However, due to the difference in prevalence of types of dementia, the severity or onset of these symptoms may differ ^[1][2].

Symptoms of early-onset dementia can include:

• Memory loss: Memory loss is a common symptom of many types of dementia, especially Alzheimer’s disease. However, it may not be the first symptom to be observed in early-onset dementia, even with early-onset Alzheimer’s. This is especially the case with other types of early-onset dementia, such as frontotemporal dementia, in which memory loss may occur following the onset of other symptoms, or not at all ^[6].
• Speech and language: Impairments in speech and language abilities are common with early-onset dementia, often referred to as aphasia. Symptoms of aphasia include difficulties with finding the right word, stumbling over sentences, speaking slowly, using incorrect words or grammar, and having trouble understanding simple language ^[7][8].
• Mood: Changes in mood can be a common symptom of many types of early-onset dementia, contributing to the challenges in diagnosis, as these symptoms are often mistaken for conditions such as depression or anxiety. Mood changes in early-onset dementia may include loss of interest in hobbies, depression, or agitation ^[1][3].
• Behavior: Changes in personality and behavior may occur in early-onset dementia, particularly frontotemporal dementia. This can include inappropriate behavior, difficulties with social interactions and understanding emotions, and disinhibition ^[2][6].
• Thinking: Cognitive impairments are common in various types of early-onset dementia and may include difficulties with problem-solving, planning, decision-making, and concentration ^[1][2].
• Mobility: Early-onset dementia may cause impairments in movements and mobility, including unsteadiness, muscle stiffness and weakness, and shaking or tremors ^[6][7].
• Hallucinations and delusions: Dementia with Lewy bodies can cause the occurrence of hallucinations and delusions, due to the part of the brain in which damage occurs ^[6].

Causes of early-onset dementia

The cause of early-onset dementia may differ from person to person and between the various types. There are certain factors that can increase the risk of early-onset dementia, and there is ongoing research occurring to further our understanding of these conditions.

Genetics

While most types of dementia are not genetic, the cases in which there is familial history are more likely to cause an earlier age of onset. As such, early-onset dementia is more likely to have a genetic risk factor than dementia in older adults ^[1].

For example, familial Alzheimer’s disease is caused by an altered gene that can be inherited. The onset of this type of dementia can occur as early as in someone’s 30s. However, this type of dementia is very uncommon, and most cases of Alzheimer’s are not genetic ^[4][6].

Frontotemporal dementia is more likely to occur at a younger age, usually between 45 and 60 years old. Research shows that up to 40% of people with frontotemporal dementia have a family history of dementia, indicating a strong genetic component to the development of this condition ^[2][6].

Learning disabilities

People with a learning disability are more likely to develop dementia than those without, and this often causes an early age of onset. Studies indicate that around 10% of people with a learning disability will develop early-onset dementia, with an even higher likelihood in people with Down syndrome ^[6][9].

The high risk of early-onset dementia in people with Down syndrome is linked to the extra chromosome that is present with this condition. It has been found that this can cause an overdevelopment of proteins which lead to plaques in the brain, thus contributing to the development of Alzheimer’s disease ^[9].

Alcohol

Excessive alcohol use can greatly increase the risk of dementia symptoms, as alcohol abuse can cause vitamin deficiency, nerve cell damage, and the potential for traumatic head injuries while intoxicated. Research suggests that around 10% of cases of young-onset dementia are related to alcohol abuse ^[5][6].

Alcohol-related dementia can potentially be improved by reducing or stopping alcohol consumption, healthy lifestyle choices, and seeking proper support ^[3][6].

Medical conditions

Certain medical conditions can increase the risk of early-onset dementia, such as heart disease, stroke, and diabetes, all of which may contribute to the development of dementia, particularly vascular dementia ^[2]. Similarly, certain types of infectious diseases can also increase the risk of dementia, but it may be reversed or reduced by appropriate treatment ^[3].

Diagnosing early-onset dementia

Issues with diagnosis

There are many challenges and barriers in diagnosing early-onset dementia, some of which may be due to the individual themselves, or due to the doctor making the diagnosis ^[5][7]. As such, it has been found that a diagnosis of early-onset dementia takes twice as long as a diagnosis of dementia in people over the age of 65 ^[4].

Sometimes, people do not notice their symptoms or might think that they are related to a different condition or stress, or alternatively, they may be afraid of seeking a diagnosis of dementia due to the potential stigma and impact this could have on their life ^[5].

Similarly, a doctor could also misinterpret the symptoms as being related to a different condition and provide a misdiagnosis, such as depression or menopause, or might think that the individual is too young to be experiencing symptoms of dementia due to a poor understanding of the condition ^[3][4][7].

Because of this, many people with early-onset dementia will not receive an appropriate diagnosis for around 4 years ^[4][7], thus causing a negative impact on their life and delays in receiving the right treatment and support, all while potentially experiencing worsening symptoms ^[1][2].

Examination

To make a diagnosis, a doctor will gather information about family physical and mental health history, particularly a history of dementia, as well as the individual’s physical and mental health history ^[3].

They will likely conduct a thorough physical examination, to ascertain any physical condition or brain damage that could be contributing to the individual’s symptoms, including blood tests and brain scans with an MRI or CT scan, and to rule out any other medical conditions ^[2][10].

They will ask about the symptoms the individual is experiencing and may use a medical questionnaire to quantify the severity of these symptoms, such as the Mini Mental State Examination (MMSE) or Montreal Cognitive Assessment (MoCA), which can help to specify deficits in certain cognitive aspects and changes in mental state ^[7][8].

Genetic testing

Genetic testing may also be useful in the diagnosis of early-onset dementia, as there is often a strong genetic component to these types. As such, someone with a family history of dementia can discover if they have a genetic mutation that can cause dementia, providing an awareness of their potential risk and an opportunity to discuss early treatment options and plan for their future ^[2][6].

However, there are psychological implications to seeking this information, as it can create anxieties and fear, cause a feeling of guilt, and impact families and future plans. Because of this, psychological support is often offered with genetic testing, to help mitigate this impact ^[6][8].

Treatment for early-onset dementia

There is no cure for early-onset dementia, although certain causes of dementia can be prevented or managed, such as treating alcoholism, vitamin deficiency, and infections ^[3]. Also, early diagnosis and treatment intervention can help to manage and reduce the impact of symptoms ^[5][11].

Education and support

It is likely that a doctor will make a referral to a specialist who can provide information and support after a diagnosis of young-onset dementia, as it can require specialized care and planning ^[3].

Having a better understanding of the condition and symptoms can help to reduce feelings of anxiety and provide an opportunity to put a plan in place around needs that may arise as the condition progresses ^[1][5].

It may be necessary to plan for a caregiver, occupational therapist, or other professional who will be involved in supporting the individual throughout their treatment ^[7][11]. Similarly, support may be required with financial planning, employment options, health insurance, and family care ^[2][3].

Medication

Medications can help to slow the progression of the condition or help to manage other symptoms that occur, such as ^[5][11][12]:

• Cholinesterase inhibitors: Rivastigmine, donepezil, and galantine are prescribed for mild to moderate cognitive impairment. They may be helpful in reducing symptoms related to memory, language abilities, and thinking that occur in early-onset dementia, particularly Alzheimer’s disease and Lewy body dementia, but may be less effective in managing symptoms of vascular and frontotemporal dementia.  
• Memantine: Memantine can also be helpful in managing or reducing symptoms that occur in Alzheimer’s disease but is also somewhat ineffective in treating frontotemporal dementia.
• Antidepressants: Antidepressants, particularly selective serotonin reuptake inhibitors (SSRIs) can be prescribed to treat symptoms of anxiety and depression that may occur with various types of early-onset dementia.

Therapy

Various types of therapy can be useful in the early stages of young-onset dementia, to help alleviate emotional distress experienced by the individual or their family, such as ^[1][3][5]:

• Individual therapy: A diagnosis of young-onset dementia can cause serious psychological impact, such as depression, anxiety, and fear about how the condition will impact physical and mental wellbeing as it progresses. This emotional distress can potentially be managed or reduced with therapeutic intervention and support.
• Group therapy: It may be useful to share and learn from others with a similar diagnosis, to gain a better understanding of the condition and ways in which to manage the symptoms and potential impact on life and functioning.
• Family therapy: Family members may require support with the distress of seeing a loved one experience this diagnosis, the challenges they may face as a caregiver, and how to best support their loved one.

Also, speech and language therapy may be useful for those who experience aphasia or other impairments in communication ^[3].

Self-care for early-onset dementia

Forming and maintaining healthy lifestyle choices can help to prevent or reduce symptoms of early-onset dementia, such as ^[5][11][12]:

• Physical exercise and healthy diet: Engaging in regular exercise and eating a healthy diet can reduce the risk and impact of conditions that can worsen dementia symptoms, such as high blood pressure, stroke, high cholesterol, and depression.
• Brain training and cognitive activity: Maintaining cognitive activity and stimulation can help to improve or reduce certain symptoms of early-onset dementia, such as those related to memory, language, and problem-solving.
• Managing stress: Reducing and managing stress and physical symptoms of anxiety can be beneficial for those with early-onset dementia. This might include breathing exercises, meditation, or gentle exercise such as walking.
• Reducing or avoiding alcohol consumption: Excessive alcohol consumption can contribute to and cause symptoms of dementia and may worsen cognitive abilities.