Five reasons young-onset dementia often goes unrecognized

Around 57 million people worldwide have dementia. While most cases of dementia are diagnosed in older adults, about 7% of cases occur in people under 65. This number may be even higher as young-onset dementia continues to be under-recognised. This means many people may be missing out on the support they need.

Here are five reasons young-onset dementia remains under-recognised.

1. Dementia is typically associated with older age

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

But this common assumption means many younger people may not seek a diagnosis from their doctor, as many don’t assume dementia could be causing any of the symptoms they’re experiencing.

Doctors, too, often fail to consider the possibility of a younger person having dementia. Many people diagnosed with young-onset dementia initially had their symptoms dismissed. Some doctors even showed little concern for their experiences. It also isn’t uncommon for younger adults to be told they’re “too young” to have dementia.

It’s not surprising then that these experiences lead to frustration, with patients and their families feeling unheard and neglected by the healthcare system.

The misunderstanding that dementia is a disease of older adults leaves people with young-onset dementia fighting to be heard.

2. Symptoms are different

Dementia is most often linked to short-term memory loss. However, cognition (which encompasses all of our mental processes, from thinking to perception) is very complex. For this reason, dementia can lead to a huge variety of symptoms – such as changes in personality and language, difficulties recognising objects, judging distances or coordinating movement and even hallucinations and delusions.

Compared to dementia in older adults, people with young-onset dementia are more likely to experience symptoms other than memory loss as the earliest signs of the condition. For instance, research shows that for around one-third of people with young-onset Alzheimer’s disease, the earliest symptoms they had were problems with coordination and vision changes.

3. Rarer causes of dementia

Dementia is an umbrella term that encompasses a range of brain disorders that all cause problems with cognition. In older adults, the most common cause of dementia is Alzheimer’s disease – accounting for 50-75% of cases. But in people under 65, only around 40% of dementia cases can be attributed to Alzheimer’s disease.

Instead, young-onset dementia tends to be caused by rarer neurodegenerative conditions, such as frontotemporal dementias. Frontotemporal dementias only affect around one in 20 people diagnosed with dementia. These conditions affect parts of the brain responsible for personality, behaviour, language, speech and executive functioning.

For example, primary progressive aphasia is one type of frontotemporal dementia. This condition affects around three in every 100,000 people. Primary progressive aphasia mainly alters a person’s ability to communicate and understand speech.

Secondary dementias are also more common in people with young-onset dementia. These are dementias that are caused by another underlying medical condition, disease (such as Huntington’s disease or a brain tumour) or external factor (such as a viral infection, substance misuse or head injury).

Recognition of these rarer forms of dementia is increasing – thanks in part to celebrities such as Fiona Phillips, Pauline Quirke and Terry Jones opening up about their experiences. But there’s still much less understanding around treatment options and managing symptoms when it comes to these rarer forms of dementia. Rarer dementias are also linked to atypical symptoms, which often go missed. This prolongs the diagnostic journey.

4. Symptoms overlap with other conditions

Symptoms of young-onset dementia have considerable overlap with those common in certain mental health conditions, such as bipolar disorder, psychosis, depression and anxiety. Symptoms might also include apathy, feelings of panic, irritability, hallucinations and delusions.

Early symptoms of young-onset dementia may also be misdiagnosed as menopause in women, as well as a period of burnout.

Of course, not everyone experiencing these symptoms will have young-onset dementia. But it’s important we raise awareness about symptom overlap to make the diagnosis process easier for those who do.

5. Experiences differ between people

The type and severity of a person’s symptoms can vary due to a variety of factors – such as their physical health, their social environment and even their stress levels. This all leads to significant variability in how dementia is experienced.

A person’s cognitive reserve (the brain’s ability to maintain good cognitive function despite damage or brain changes) also affects their experience of dementia symptoms and how they cope with them. Some people may adapt more effectively, drawing on strong support networks, psychological resilience or their own personal coping strategies to overcome these challenges.

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

Need for awareness

The under-recognition of young-onset dementia is significant. It contributes to the lack of resources, specialised care and advice, appropriate support and early diagnosis for people with young-onset dementia. While this is improving, greater awareness still needs to be brought to the experience of dementia in younger adults – especially given research shows that the progression of cognitive decline is more pronounced in younger adults.

If you’re worried about yourself or a family member showing signs of dementia, it’s important to discuss symptoms and seek support early. You can also contact local dementia support organisations such as Alzheimer Scotland, Dementia UK, and Alzheimer Society, who can provide information, resources and guidance on support options.

This article is republished from The Conversation under a Creative Commons license. Read the original article.