KYN's Guide to Early Onset Dementia

When dementia touches someone's life before the age of 65, it brings unique difficulties that extend far beyond the condition itself. It can disrupt careers at their peak, affect family life when children may still be at home, and reshape futures that were filled with active plans and aspirations. Yet with the right understanding, support and approach, those living with early onset dementia can continue to lead meaningful, enriching lives.

At KYN, we recognise that younger people experiencing dementia require a different kind of care. This guide explores what early onset dementia truly means, how it differs from dementia in later life, the symptoms to be aware of, and the pathways to diagnosis and support.

What is Early Onset Dementia?

Early onset dementia, also known as young onset dementia, is described as 'young onset' when symptoms develop before the age of 65. It most often develops in people between the ages of 45 and 65 but can affect people of any age. The term "early onset" can sometimes be confused with dementia in its early stages, which is why many healthcare professionals prefer the term "young onset dementia". An estimated 7.5% or 70,800 of the estimated 944,000 people living with dementia in the UK are living with young onset dementia where symptoms occurred under the age of 65. These figures likely underrepresent the true numbers, as the low levels of awareness and the difficulties of diagnosing the condition at working-age mean popularly used statistics are likely to be inaccurate and do not reflect the true number of people who are affected.

How Does Early Onset Dementia Differ from Later-Life Dementia?

The experience of developing dementia at a younger age brings distinct difficulties that set it apart from dementia in later life.

The Diagnostic Journey Takes Longer

On average, a person may see between two and five different consultants before a diagnosis is made. The average time to diagnosis is 4.4 years in younger people compared to 2.2 years for people aged over 65. This prolonged journey to diagnosis can be particularly distressing. Awareness amongst GPs is still relatively low and when people are younger, symptoms are often attributed to stress, anxiety, depression or menopause.

Different Life Circumstances Create Unique Pressures

People living with early onset dementia face distinctly different life circumstances:

• Financial Responsibilities - Younger people are more likely to still be working when they are diagnosed. Many will have significant financial commitments such as a mortgage. The impact on employment and income can be devastating, particularly when financial obligations are at their peak.
• Family Dynamics - They often have children to care for and dependent parents too. This creates a complex web of caring responsibilities, where the person with dementia may simultaneously be caring for others whilst beginning to need care themselves. Active Lifestyles - Their lives tend to be more active and they have hopes, dreams and ambitions to fulfil up to and beyond their retirement. The disruption to life plans and future aspirations can be particularly challenging to accept.

Symptoms Often Present Differently

People often associate it with memory loss, but this is less likely to be an early symptom of living with young onset dementia. Instead, people with young onset dementia experience early changes in: behaviour and personality, language and communication skills, visual perception and spatial awareness, problem-solving and decision-making abilities, and physical movement and coordination.

What Symptoms Should You Look Out For?

Understanding the symptoms of living with early onset dementia is crucial for early recognition and support. The symptoms of living with dementia differ from person to person, depending on the type of dementia and which parts of the brain it affects.

Cognitive and Communication Changes

People with young onset dementia may experience changes in thinking, problem-solving, decision-making and communicating. These might include difficulty finding the right words during conversation, problems with planning or organising tasks, difficulties with technology that was previously manageable, and difficulty following conversations or storylines.

Behavioural and Personality Changes

These changes are especially common if there is damage to the frontal and temporal lobes of the brain – for example in frontotemporal dementia. You might notice someone becoming more impulsive or showing poor judgement, developing new or obsessive interests, showing less empathy or social awareness, or experiencing mood swings or personality changes that seem out of character.

Physical Changes

Over time, dementia may lead to changes in a person's movement and physical skills – particularly in Lewy body dementia and Parkinson's. Common symptoms include changes in gait, shuffling, slower walking speed, and shorter strides. These physical changes can be particularly noticeable in younger people who were previously very active.

Which Types of Dementia Affect Younger People?

About a third of people living with young onset dementia have Alzheimer's disease. However, the range of dementias affecting younger people is notably diverse. Around 20% of younger people living with dementia have a rarer form of the condition, such as posterior cortical atrophy (PCA) or primary progressive aphasia. There are also other conditions that can lead to dementia in younger people, such as Parkinson's and Huntington's disease.

People who are under 65 are more likely to be diagnosed with a genetically inherited form of dementia or a rarer dementia that can be difficult to recognise. This genetic component often prompts concerns about inheritance among family members, particularly children.

How Can KYN Support Those Living with Early Onset Dementia?

At KYN, we understand that early onset dementia presents unique difficulties requiring specialised support. Our approach honours each individual's journey, recognising that younger people living with dementia often have different needs, abilities and aspirations than those diagnosed later in life. Our care teams are specially trained to support the complex needs of those living with early onset dementia, providing personalised care that adapts as needs change over time.

We create environments that support independence whilst ensuring safety, recognising that it is important that a person with dementia is helped to maintain their work and social life, carry out everyday tasks and remain independent for as long as possible. Living with early onset dementia requires understanding, expertise and compassionate support. At KYN, we're committed to providing excellence in dementia care, helping individuals live well at every stage of their journey. To learn more about how we can support you or your loved one, please reach out to us today.