Signs of young-onset dementia

Young-onset dementia is, unfortunately, a difficult diagnosis to make and to date, there is no successful treatment available. Professor Peter Garrard sees many patients in his clinic who present with the tell-tale signs of a possible case of young-onset dementia. Here, he explains what these signs are, what we know about the causes of dementia and what managing the condition currently looks like.

At what age can young-onset dementia occur?

The youngest patient I have ever seen in my practice for young-onset dementia was just 29 years of age. However, in theory, it can occur in younger people, but thankfully this is very rare. In general, anyone diagnosed with dementia under the age of 70 can be considered as having young-onset dementia.

Do we know what causes young-onset dementia?

The causes of dementia are still not fully known or understood. However, it is currently thought that in patients with young-onset dementia, the younger the patient is, the more likely it is that they have a certain genetic mutation that relates to the condition.

What is the prognosis of young-onset dementia?

At present, dementia is untreatable, meaning that it cannot be cured or stopped in its progression. Eventually, frontotemporal dementia (FTD) and Alzheimer’s will render someone helpless and reliant on others. Additionally, we know that it makes individuals more susceptible to other illnesses. Currently, there is no evidence to indicate that dementia can be an official cause of death, however, it is certainly considered as a life-limiting disease.

What are the signs to be mindful of?

Memory loss

The most common complaint made by patients coming to see me for potential young-onset dementia is loss of memory. By loss of memory, this does not mean that individuals forget what has happened in recent days or hours, but more that they struggle to remember faces or words – this is an important distinction to understand.

When comparing the key signs of young-onset dementia we can see the following patterns:

• Alzheimer’s patients will often present with day-to-day memory problems.
• Frontotemporal dementia (FTD) patients often present initially with language problems (i.e. memory for words).

However, there is a commonly held dogma that FTD patients never present with day-to-day problems, but sometimes they do. Therefore, it is important during a diagnosis that FTD is not dismissed based on the presentation of such memory problems.

Personality changes

Aside from problems with memory, young-onset dementia may first present itself as changes in the personality of an individual. To illustrate this, it is helpful the think of personality in three different dimensions:

1. Energy and enthusiasm
2. Self-control and self-censorship
3. Obsessiveness and the performance rituals

Patients may experience either all or one of these dimensions of personality changes. For example, someone might become disinhibited (appearing tactless, rude or even offensive) - losing their filter in social situations, or they could become apathetic and lose their energy and motivation. Other personality changes I have seen include becoming overly obsessed with certain rituals, such as putting things in certain places, doing behaviours at the same time or eating the same foods repeatedly.

It is very uncommon for patients to notice these changes in personality themselves, so it is often family or friends who pick up on them first. Because of this, dementia can be difficult to diagnose, but also it is not uncommon for patients to visit a mental health specialist first before considering the need to see a memory specialist or neurologist. Fortunately, awareness of young-onset dementia is improving and it is becoming increasingly recognised by GPs and healthcare professionals.

What should you do if you think you or a loved one has young-onset dementia?

The first thing to do is to get an appointment with someone who has expertise in dementia and memory problems. Such an expert would be extremely sensitive to the signs of changes in memory of an individual. After seeing a specialist, the outcome may be the reassurance that their symptoms are not caused by dementia, but sometimes the following diagnostic tests may be needed:

• MRI scanning
• PET (positron emission tomography) scanning
• Assessment by a neuro-psychiatrist

What happens if the diagnosis is young-onset dementia?

Once diagnosed, management and treatment options will be discussed. Despite there being no successful treatments to date, there are lifestyle modifications that, in theory, should slow down the disease’s progression, however, this differs between individuals. Such lifestyle measures I encourage include:

• Taking B vitamins
• Taking omega-3 fish oils
• Engaging in adequate physical exercise
• Maintaining cognitive engagement

These are all considered to be neuroprotective measures and should help to slow disease progression.

Although there are no real treatments available, Alzheimer’s and FTD are very actively researched and there are treatment trials available, particularly for Alzheimer’s. This is something that can be discussed with your specialist.

Another thing I urge patients to do is to arrange lasting power of attorney. This ensures that the patient’s affairs will be kept in order and their interests looked after by a trusted individual when their disease progresses.

To make an appointment with Professor Garrard, visit his Top Doctors profile here.