What is young-onset Alzheimer’s disease?
Young-onset Alzheimer’s disease is a type of dementia, and is also known as “early-onset Alzheimer’s disease” or “working-age Alzheimer’s disease”. This is because when people’s symptoms begin when they’re aged under 65, it’s referred to as “young-onset dementia” (or “early-onset dementia”), not due to a biological reason, but based on the fact that most people retire aged 65.
According to the Alzheimer’s Society, more than 70,800 people in the UK are living with early-onset dementia. Specifically looking at early-onset Alzheimer’s disease, the NHS estimates that around one in every 20 people under the age of 65 live with the condition.
In this article, we’ll take a deep dive into some young-onset Alzheimer’s symptoms, so you can be better prepared to know what signs to look out for in yourself and loved ones.
This article can, understandably, be a difficult read, particularly if you or your loved one suspect you have any of the symptoms of early-onset Alzheimer’s disease mentioned. It may help to know that there are lots of healthy lifestyle changes you can make right now to help improve your brain function.
Young-onset Alzheimer’s disease symptoms
Whereas older people living with Alzheimer’s disease have higher chances of experiencing memory loss as their first noticeable symptom, for younger people with the condition, this is less likely to be the case. For them, their initial symptoms tend to depend on what specific form of Alzheimer’s disease they have (younger people are much more likely to have an unusual (‘atypical’) type of the condition):
- Posterior cortical atrophy (PCA) – the early symptoms are commonly difficulties with comprehending visual information, for instance, finding reading or the judging of distances tough.
- Logopenic aphasia -the first signs are typically challenges with language and speech, for example, pausing for a long time when speaking or having trouble finding the right vocabulary.
- Behavioural / dysexecutive Alzheimer’s disease – often initially manifests itself as acting in a socially unsuitable manner or struggling to make choices and plan.
As the condition progresses, young-onset dementia is more likely to result in issues with:
- movement
- walking
- co-ordination or balance
More specifically, although everyone is different and their dementia experience will be totally unique to them, as any type of dementia progresses, changes in people with all forms of the condition are similar. The following can be early-onset dementia symptoms (and other forms of dementia):
- Increasing confusion about the time and location and having more problems with reasoning
- More serious issues with communication
- Worsening memory problems, such as forgetting names, events and faces
- Delusions (believing untrue things) and visual hallucinations (seeing things that others don’t)
- Behavioural changes, for instance agitation or repeatedly asking the same questions
- Slower, more unstable walking
- Weight loss
- Problems with eating and swallowing
It’s important to note, some of these symptoms may be signs of other diseases, so, should you be experiencing any of them, it’s vital to see your doctor as soon as possible to undergo a comprehensive clinical assessment.
Over the years, studies have found a faster rate of decline of cognitive function in early-onset Alzheimer’s disease compared to late-onset Alzheimer’s disease, including this three year, prospective, observational, multicentre study of around 1000 participants with mild to moderate Alzheimer’s disease. However, the Alzheimer’s Society suggest more evidence is needed to be certain of this.
Early-onset dementia symptoms and what they mean for life expectancy
Age Space claim the average life expectancy for a person with Alzheimer’s following diagnosis is 10 years, admitting, “dementia progresses differently in everyone, meaning people can live anywhere from 2 years to 26 years after diagnosis.” When it comes to young-onset dementia, the organisation explains that, despite often receiving a diagnosis at a young age inferring a longer life expectancy, the condition actually seems to progress quicker and those diagnosed usually live on average less than other types of dementia (~8 years).
According to the Alzheimer’s society, various factors can influence how rapidly a person’s dementia progresses, including their genes and overall health. They also note that there’s some evidence that keeping active and involved, say in community groups, can help a person retain their cognitive abilities for longer. This is why it can help to eat healthily, get plenty of sleep, and exercise regularly.
Up to a third of younger people with Alzheimer’s disease will have one of the unusual types of the condition as listed above – but what of the others?
A note on familial Alzheimer’s disease and symptoms:
A small proportion of people with young-onset Alzheimer’s disease have what’s referred to as “familial Alzheimer’s disease”, which earns its name from being the result of gene changes (mutations) – specifically the rare mutations seen in PSEN1 (presenilin 1), PSEN2 (presenilin 2) and APP (amyloid precursor protein). Fewer than one in 100 people living with Alzheimer’s disease will have the genetic variation of it.
With a 50% risk of a child inheriting the familial Alzheimer’s disease mutation from their parents, people living with the condition typically have a clear family history of it and family members affected at a similar age, including a parent.
Symptoms tend to start showing when someone who has familial Alzheimer’s disease is in their 30s, 40s or 50s.
In cases where there’s a very strong family history of dementia, a person may have the condition due to a single-gene change. Where this is the situation, genetic testing may be offered to them and their family and is available through the NHS.
Familial Alzheimer’s disease and symptoms
The AlzForum Foundation Inc states that: “Neurologists generally agree that eFAD [early-onset familial Alzheimer Disease] and late-onset AD [LOAD] are essentially the same disease, apart from the differences in genetic cause and age of onset. eFAD progresses with the same overall sequence of symptoms and increasing impairments as LOAD.”
However, the AlzForum also notes that early-onset familial Alzheimer’s disease is especially tragic as the person experiences a relentless and progressive loss of cognitive function so early in life. Understandably, this means early-onset familial Alzheimer’s disease often comes with psychiatric complications, like depression and agitation (indeed, this longitudinal study found this was the case for general young-onset Alzheimer’s disease, not just the familial type).
For the most part though, young people with familial Alzheimer’s disease are likely to experience the symptoms that characterise the Alzheimer’s disease that their older counterparts get. These can include:
Early symptoms:- Memory lapses, such as:
- being unable to recall conversations or events they’ve attended recently
- losing things
- being unable to name places or objects
- struggling to think of the correct word
- asking the same questions
- having poor judgement and finding decision-making a challenging
- becoming less open to trying new things and more rigid in their mentality
- Periods of confusion
- Mood changes, for example heightened anxiety or agitation
- Memory problems worsen, for instance an individual may find it hard to recognise family and friends
- Confusion and disorientation deepens, the person may get lost or not know what time it is, for example
- Delusions (or paranoia and suspicion of carers and/or family members)
- Trouble with language and speech
- Disturbed sleep
- Circadian rhythm disruption
- Mood changes like:
- frequent mood swings
- depression
- feeling anxious, frustrated or agitated
- Problems with spatial tasks, for example judging distances
- Hallucinations (seeing or hearing things others don’t)
- Hallucinations and delusions worsen
- Becoming violent, demanding, and suspicious of others
- Issues eating and swallowing
- Trouble changing position and moving around unaided
- Weight loss, which can sometimes be severe
- Accidental passing of urine or stools (poo)
- Slow loss of speech
- Considerable difficulty with short-and long-term memory
The importance of seeing your GP about your young-onset Alzheimer’s symptoms
Although there’s currently no cure for dementia, there are treatments which may relieve some of its symptoms. So, if you think you have early signs of a form of dementia, it’s crucial that you contact your GP, who’ll carry out assessments and investigations and, where needed, specialist referrals to help determine what’s causing your symptoms.
A specialist is more likely to be able to establish if you do, in fact, have early-onset dementia, or if you have a treatable and potentially reversible cause of dementia syndrome, (secondary dementia that isn’t the result of a primary neurodegenerative disease and isn’t caused by vascular dementia). In percentage terms, dementia syndromes are considerably more common in younger people than in older people. What’s more, the younger a person is when dementia-like symptoms start to show, the higher the proportion of treatable and potentially reversible causes of dementia syndrome.
Early-onset dementia symptoms tests may be given to those who present with some of the symptoms above to evaluate various cognitive abilities, such as language and communication skills, awareness of time and space and ability to focus.
Living well with dementia
As with most things, your mood is closely linked to your lifestyle, which includes what and when you eat, if you exercise and how you sleep. Although, these and other non-drug approaches, for instance, Cognitive Stimulation Therapy or Behavioural therapy, should always be the first port of call when managing mood and behavioural changes, medications to help with memory, thinking and mood changes are also prescribed by GPs for Alzheimer’s disease, and some other forms of dementia.
Knowing that lots of non-medical support with living dementia is available through the NHS and social care can help. For example, social support, carers, benefit advice, and treatment for depression, which is often seen with dementia. The Young Dementia Network, offering age-appropriate support, and an opportunity to meet with others in a similar situation, may also be useful.
Caring for a loved one who’s living with dementia can also be difficult. That’s why Dementia UK have produced a bank of resources for carers outlining practical and emotional advice.
For support in caring for your overall current mental and physical health and wellbeing, consider the free Evergreen Life app.Reviewed by:
Anna Keeble MA BA Head of Content and Wellbeing Expert
Dr Claire Marie Thomas MRCGP DFSRH DTMH DipNLP MBChB BMedSci Medical Expert
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