What is young onset dementia?

Dementia is described as ‘young onset’ when the person’s symptoms develop before the age of 65. There are over 70,000 people in the UK estimated to be living with young onset dementia.

You may hear it referred to as ‘working age’ or ‘early onset’ dementia but we prefer to use the term ‘young onset’. Retirement age is rising, and ‘early onset’ is also used to refer to the early stages of dementia, regardless of how old the person is, and people experience the early stages of dementia at any age. Both terms can therefore create confusion whereas ‘young onset’ makes it clear that the person has developed dementia at a younger age.

Young onset dementia types and symptoms 

Dementia is an umbrella term for a range of different diseases that cause damage to the brain and lead to a progressive decline in a person’s abilities. There are many different types of dementia – Alzheimer’s disease is the most common accounting for around 30% of dementia cases in younger people, followed by vascular dementia and frontotemporal dementia. Approximately 20% of people aged under 65 have a rarer form or familial/inherited form of dementia. For more information, visit our facts and figures page.

Symptoms, and the progression of the condition, differ from one person to another depending on the type of dementia a person has and which parts of the brain it affects. For younger people, the early symptoms of dementia are often not memory related. Commonly in younger people personality, behaviour, communication skills, mobility and movement, vision and spatial awareness and mood are affected. Dementia UK’s leaflet ‘Young onset dementia: different symptoms’ gives more detailed information.

Getting a diagnosis

The early symptoms of young onset dementia may not be memory loss. Symptoms can differ from one person to another depending on the type of dementia a person has, and which parts of the brain are affected. Dementia is considered by many to be a condition that only affects older people which can lead to the early symptoms of dementia in a younger person not being recognised or misdiagnosed. They may be attributed to other causes such as menopause, anxiety, depression, stress or relationship issues which can result in delays in getting a diagnosis that last a number of years.

This period of uncertainty can delay access to treatment and support and impact negatively not just on the person with dementia’s life but on the whole family. Younger are more likely to be working at the time they receive a diagnosis and have significant financial commitments such as a mortgage. They may have dependent children and at the same time be providing care to elderly parents. Receiving a diagnosis at this stage of life can have a considerable emotional, financial and psychological impact.

If someone is concerned about changes they have noticed in themselves or in someone else, it is important to consult a GP as soon as possible to rule out other conditions that have similar symptoms, and to ensure that support can be put in place if dementia is diagnosed.

Young onset dementia information and support  

Receiving a dementia diagnosis in mid-life will inevitably mean that daily life and future plans change, but staying active and involved brings many benefits.

The Young Dementia Network does not provide support, it is an online influencing community made up of people who are passionate about creating positive change for people affected by young onset dementia. You can join for free here. The Network has a range of young onset dementia specific resources that you may find useful.

For details of organisations who offer young onset dementia-specific information, groups, services and support, please click here.