Five reasons young-onset dementia often goes unrecognized

Approximately 57 million people worldwide suffer from dementia. While most cases of dementia are diagnosed in older adults, approximately 7% of cases occur in those under 65. This figure could be higher because young-onset dementia is underdiagnosed. As a result, many people may not receive the support they need.

Here are five reasons why young-onset dementia is underdiagnosed.

1.Dementia is generally associated with aging

When you hear the word “dementia,” do you think of someone under 65? While dementia is generally associated with older adults, it doesn’t discriminate based on age. In fact, anyone (even children) can be diagnosed with different types of dementia.

However, this misconception prevents many young people from consulting their doctor for a diagnosis, as many do not assume that dementia could be the cause of their symptoms.

Doctors also often overlook the possibility of dementia in young people. Initially, the symptoms of many people diagnosed with early-onset dementia were ignored. Some doctors showed little interest in their experience. It is also not uncommon for young people to be told that they are “too young to develop dementia.”

Unsurprisingly, these experiences can be frustrating, as patients and their families feel ignored and neglected by the healthcare system.

The misconception that dementia is a disease of older people makes it difficult to hear those with early-onset dementia.

2.Symptoms vary.

Dementia is often associated with short-term memory loss. However, cognition (which encompasses all our mental processes, from thinking to perceiving) is highly complex. As a result, dementia can cause a wide variety of symptoms, such as personality and language changes, difficulty recognizing objects, judging distances, or coordinating movements, and even hallucinations and delusions.

Compared to dementia in older adults, people with early-onset dementia are more likely to experience symptoms other than memory loss as early signs of the disease. For example, research shows that about one-third of people with early-onset Alzheimer’s disease had early symptoms, including coordination problems and vision problems.

3.Rare Causes of Dementia

Dementia is an umbrella term for a group of brain disorders that all lead to cognitive problems. In older adults, Alzheimer’s disease is the most common cause of dementia, accounting for 50 to 75% of cases. However, in people under 65, only about 40% of dementia cases can be attributed to Alzheimer’s disease.

Year-onset dementia is more likely caused by rare neurodegenerative diseases, such as frontotemporal dementia. Frontotemporal dementia affects only about one in 20 people diagnosed with dementia. These conditions affect the areas of the brain responsible for personality, behavior, language, speech, and executive functions.

For example, primary progressive aphasia is a type of frontotemporal dementia. This condition affects about three in 100,000 people. It primarily affects the ability to communicate and understand speech.

Secondary dementia is also more common in people with early-onset dementia. This is dementia resulting from another underlying condition, a disease (such as Huntington’s disease or a brain tumor), or an external factor (such as a viral infection, drug abuse, or head trauma).

Awareness of these rare forms of dementia is growing, thanks in part to the stories of celebrities such as Fiona Phillips, Pauline Quirke, and Terry Jones. However, the treatment options and symptom management of these rare forms of dementia are still much less well understood. These rare forms of dementia are also associated with atypical symptoms, which are often overlooked, lengthening the diagnostic process.

4.Overlap of symptoms with other conditions

The symptoms of early-onset dementia are very similar to those of some common mental disorders, such as bipolar disorder, psychosis, depression, and anxiety. They can also include apathy, feelings of panic, agitation, hallucinations, and delusions.

The early symptoms of early-onset dementia can be mistaken for menopause or a period of fatigue.

Of course, not everyone with these symptoms develops early-onset dementia. However, it is important to raise awareness of the overlap of symptoms to facilitate diagnosis.

5.The experience varies from person to person

The type and severity of a person’s symptoms can vary depending on multiple factors, such as physical health, social environment, and even stress levels. All of this leads to significant variations in how a person experiences dementia.

A person’s cognitive reserve (the brain’s ability to maintain good cognitive function despite brain damage or changes) also influences their perception of dementia symptoms and how they cope with them. Some people may cope more effectively with a strong support network, psychological resilience, or their own coping strategies.

All of these factors can make it difficult to recognize the symptoms of early-onset dementia, especially in its early stages.

Need for Awareness

Lack of awareness of early-onset dementia is crucial. It contributes to the lack of resources, specialized care and guidance, appropriate support, and early diagnosis for people with early-onset dementia. Although the situation is improving, there is still a need to increase awareness of dementia among younger adults, especially since research shows that the progression of cognitive decline is more pronounced in these young adults.

If you are concerned about signs of dementia in yourself or a family member, it is important to discuss it and seek help early. You can also contact local dementia support organizations, such as Alzheimer’s Society Scotland, Dementia UK, and the Alzheimer’s Society, who can provide information, resources, and advice on support options.