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What is Young Onset Dementia?

Dementia is a condition which is usually associated with people of retirement age, however, while numbers are much lower for people under 65, there are still thousands who are affected by it every year.

It is thought that 70,800 people, or 7.5% of people living with dementia in the UK are living with young onset dementia – which is where dementia symptoms occurred under the age of 65.

The symptoms can sometimes be mistaken for stress, anxiety, menopause and depression, which is why many cases of young onset dementia can go undiagnosed. While there is greater likelihood that symptoms of dementia in people under the age of 65 will be down to other reasons, it is always worth getting properly checked out by a health professional if and when you experience any change.

Symptoms of young onset dementia

For people over the age of 65, memory loss is one of the first symptoms of dementia, but this is unlikely to be the first symptom in people with young onset dementia.

More likely first symptoms of young onset dementia include changes in:

  • Behaviour and personality

  • Language and communication

  • Co-ordination and balance

  • Vision and spatial awareness

They could also start to experience falls and greater levels of clumsiness due to the issues with balance.

Living well with young-onset dementia

While having a dementia diagnosis is naturally going to be a worrying time, the good news is that there are ways to live positively and well with young onset dementia. These include being prepared for the future, making adaptations to the home, speaking with friends and family about future wishes and making positive changes to your lifestyle to promote health and wellbeing.

Additionally, for people with young onset dementia, it may be that they are still in employment, so, for this reason, there are steps which employers and colleagues can take to support them.

If someone has young onset dementia in your workplace, it is important to be sensitive to the fact that they are likely to be dealing with a great deal of worry and fear regarding what the future holds for them and their dependents, as well as financial concerns. Look to establish a dementia friendly workplace culture which is wholly understanding of the condition, reassuring and supportive of people living with dementia.

Some of the key things to consider when helping to make a work space more comfortable for colleagues with dementia are as follows:

  • Aim to keep anxiety and noise levels low

  • Show that you understand dementia, by learning about it and being patient and understanding

  • Offer a friendly face and a listening ear

  • Keep learning about dementia

  • Create a safe, quiet space where they can go if they feel overwhelmed

As an employer, you may wish to consider having a dementia advocate in place before a member of your team is diagnosed with dementia. A team member could undergo relevant training to ensure they are fully aware of how to spot the signs and help to support someone through their whole dementia journey.

It’s good to talk

In addition to reaching out to friends and family, once you have been diagnosed with young onset dementia, peer support and being connected to others in a similar situation via a group environment is a great way to enable you to live well with dementia.

Try to share your experiences with others and make the most of any support there is. If you would like to talk to others with similar experiences, you can sign up to our new breakfast club for people under 65 with young onset dementia, which starts on Tuesday, 23rd January and takes place every three weeks after that.

Drop into Sage House in Tangmere, your welcoming local community hub, from 8:30 am - 10 am for informal discussions, helpful information and peer support regarding young onset dementia. Our aim is to help you live well with dementia in every possible way.


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