Early-onset dementia, also known as young-onset dementia, is a diagnosis given when dementia symptoms present before the age of 65.

Although this can happen from around the age of 30, early-onset dementia is most common in those over the age of 50.

It’s estimated that nearly 8% of people with dementia in the UK have young onset dementia, which is approximately 70,800 people. Of these people, around 33% have Alzheimer’s disease and 20% have vascular dementia.

The average time taken for those under 65 to receive a diagnosis is around four years, whereas it typically takes just over two years for someone aged 65+ to be diagnosed.

Signs and Symptoms of Early-Onset Dementia

The symptoms of dementia are similar, regardless of what age the condition presents.

Common symptoms include:

• Memory loss
• Difficulty with tasks
• Withdrawal from others
• Confusion
• Lack of judgement
• Speech problems
• Changes to behaviour and personality

Early-Onset Dementia Diagnosis

This type of dementia can be harder to diagnose, often due to the age of the person. This can also be attributed in part to a lack of awareness, meaning healthcare professionals are more likely to consider other conditions first.

Patients may be misdiagnosed with to a range of other issues, such as stress, depression, nutritional deficiencies and even side effects from medications.

However, once finally suspected, various tests, assessments and examinations can be used to confirm a diagnosis.

Challenges of Caring for Someone With Early-Onset Dementia

Caring for anyone with dementia can be a challenge, but early-onset dementia can pose unique difficulties.

A person diagnosed with dementia earlier in life might be raising children, be in full-time employment and have big financial commitments, such as a mortgage.

As the caregiver, this might mean having to take on extra responsibilities, such as childcare, or finding solutions to financial difficulties when the person with dementia can no longer work.

As soon as your loved one is diagnosed with early-onset dementia, it’s wise to create a Lasting Power of Attorney agreement. This document will give a named person, most likely you as the carer, the legal right to make decisions on behalf of the person with dementia.

This is also a sensible time for the person with dementia to write a will if they haven’t already done so.

Caring for a Spouse with Dementia

If your partner has been diagnosed with early-onset dementia, this can naturally be a difficult situation to come to terms with.

You’ll likely experience a range of emotions as you contemplate a different future to the one you had always imagined. It’s normal to experience loneliness and a sense of loss, even though your spouse is still with you. This is likely to escalate as your caregiving responsibilities increase.

It can be extremely valuable in the long run to have the big conversations early on. This involves communicating your feelings and fears to each other and putting a plan in place for how you’ll both adapt to the diagnosis.

Where possible, continue with the activities that you normally enjoy doing together. As time goes on, you can find new activities to do together that suit your partner’s capabilities.

Caring for a Spouse with Dementia When You Have Children

Caring for a spouse with dementia while also raising a family can be hard for you and for your children.

It's helpful to share age-appropriate information with your children about your spouse’s condition. This will help them to understand differences in behaviour and changes to regular routines.

It’s also a good idea to contact the school to let them know what’s going on at home and to find support groups or counselling sessions that your children can attend.

Additionally, finding activities that you can enjoy as a family will allow you all to continue making memories together.

Financial Considerations and Support

A person with dementia may be able to continue in their employment for a short while, but will inevitably have to leave their job as their condition progresses. As the spouse of someone with dementia, this can leave you as the sole earner, which becomes even more challenging as your care responsibilities increase.

Early retirement can be a good option for some and there are also several welfare benefits to explore.

There are a number of benefits that the person with dementia could be eligible for and different benefits for you as the carer. The Turn2us benefits calculator will show you what you’re entitled to.

As a carer, you can become an appointee in order to apply for and manage the benefits of your loved one.

Once you become an appointee for someone, their benefits will be paid directly to you, which can make managing your finances a little smoother. Dementia can cause behaviour changes, which might sometimes lead to impulsive spending. So having a greater degree of control over your shared money can help to prevent this.

What Support is Available?

The majority of support services for people with dementia are aimed at the needs of older people, such as those above the age of 65. This can make it harder to access relevant support when you’re caring for someone with young-onset dementia.

The specific services that are available to you will depend on where you live. It’s a good idea to ask your GP about this and you can also search online.

Click here for a list of organisations that you can contact for guidance.

It might be the case that your loved one with dementia needs more specialised care than you can provide. In this case, a care home might become the most appropriate solution.

Unfortunately, there are very few care homes in the UK that specialise in younger patients with dementia, so it may be complicated to find a suitable solution. The Young Dementia Network can be a helpful place for information on this.

Frequently Asked Questions about Young-Onset Dementia

Hopefully, you will have found answers to questions and concerns in this article. You’ll also find answers to additional questions in our FAQ section below!

How common is early-onset dementia?

A study conducted in 2022, found that the prevalence of early-onset dementia is 92 people per 100,000 within the general population.

Is there a test for early-onset dementia?

There isn’t a single diagnostic test that can be used to definitely diagnose any kind of dementia. A series of tests, assessments and examinations will be conducted to eventually reach an answer.

What is the life expectancy of someone with early-onset dementia?

Since diagnosis before the age of 65 is not common, there isn’t much definitive research to provide an accurate answer to this question.

A study published in 2019, found average life expectancy after the onset of symptoms to be approximately 17 years and average life expectancy after diagnosis to be ten years.

However, the study notes that this does depend on the type of dementia the patient has developed. Those with Alzheimer's disease had the shortest average lifespan after symptom onset and diagnosis.

What are the risk factors for early-onset dementia?

It is not yet fully understood what all of the risk factors are for developing dementia at a relatively young age.

Here’s what we do know:

• Having a close genetic link to someone with dementia can be a risk factor for early-onset.
• People with Down’s syndrome are much more likely to develop dementia at a young age.
• People from Black and minority ethnic communities seem to be more likely to be diagnosed with dementia under the age of 65.
• Excessive alcohol consumption is linked to an increased risk of dementia, especially young-onset.
• Repeat serious head injuries (such as those that may be experienced from boxing or playing rugby) are thought to lower the age of onset for dementia.

What are the warning signs?

Memory loss is commonly associated with dementia, but this is less likely to present as an early indicator of young-onset dementia.

Instead, changes to behaviour and personality may occur, alongside problems with speech movement, balance and vision.

How young can early-onset dementia start?

It is rare for a person under 30 to develop dementia, however, it can happen at any age. Due to the fact it’s uncommon, it’s often harder for young people to get diagnosed.