Early Onset Dementia

Imagine being in your forties, balancing the demands of raising a family, managing a busy career and keeping up with an active social life. You’re making plans for the future and enjoying the prime of your life when suddenly you are given the life-altering news that you have early onset dementia. For over 70,800 people in the UK, this is their reality. That number has soared by an alarming 69% since 2014, reflecting a growing and concerning trend. Families are left navigating not only the emotional toll, but the complex challenges that come with a condition often diagnosed much later in life.

Early onset dementia (otherwise known as young onset dementia) can be particularly difficult to diagnose, as often symptoms get missed or ignored due to the age of the individual, making an actual diagnosis far more difficult to obtain.

The challenges faced by people living with young onset dementia are profound and often misunderstood, both for themselves and their loved ones. In this article, we will explore what support can be outsourced following a diagnosis of early onset dementia and what help families and loved ones can provide to make life easier.

Get Support With Early Onset Dementia

What is Early Onset Dementia?

Early onset dementia, also referred to as young onset dementia, refers to a diagnosis of dementia in a person under the age of 65. Unlike the more common late onset dementia, which typically occurs later in life, early onset can develop in people as young as their 30s-40s.

Dementia encompasses several conditions, including:

The symptoms are similar to those seen in older adults, such as memory loss and changes in behaviour, but the impact can be even more disruptive as the person may be at the peak of their career, have an active social life or still be raising children. Early diagnosis is crucial for managing symptoms and planning for the future. Still, as this is a less common form of dementia, symptoms are often missed or mistaken for other medical concerns.

Common Symptoms of Young Onset Dementia

Symptom Category	Typical Symptoms
Cognitive	Short-term memory loss - Difficulty concentrating or solving problems - Struggling with planning or organisation - Getting confused in familiar places
Language & Communication	Difficulty finding the right words - Repeating words or phrases - Trouble understanding written or spoken language
Behavioural & Emotional	Mood swings or irritability - Apathy or social withdrawal - Lack of empathy - Depression or anxiety
Physical & Sensory	Poor coordination or balance (depending on type) - Visual misinterpretation - Changes in walking or posture
Work & Daily Life	Struggling to meet work responsibilities - Difficulty managing finances or appointments - Reduced performance in daily tasks

Living with Dementia As a Young Person

A diagnosis of dementia in a young person presents a set of unique challenges that differ significantly from those faced by older adults. The diagnosis can lead to feelings of grief, isolation and frustration, particularly as the stigma is that dementia only affects the elderly. Whilst navigating daily life may indeed become increasingly difficult, measures can be put in place to ensure that individuals maintain quality of life, find new routines and stay connected with loved ones. These measures include:

Daily Coping Strategies

Create structure and routines: Establishing daily routines can help reduce confusion and increase independence.
Use reminders and tools: Make use of alarms, apps and written notes to help you manage tasks and remind you of things you need to do.

Mental Health and Wellbeing

Prioritise self-care: Engage in regular physical activity, eat a balanced diet and participate in activities that spark joy and purpose
Communicate openly: Share how you are feeling with close friends and family and let them know how they can help you feel supported.
Build a support network: You may be in the thick of raising a family or working a busy job and need to put measures in place to help you with those things. Utilise the support of loved ones and seek out professional help if required.

Practical Solutions

Stay informed: Learn as much as you can about the type of dementia you are living with to help you understand what to expect and how to manage your symptoms.
Plan for the future: Begin early planning for legal, financial and care decisions. It is best to plan for these while you are still able to participate fully. This may include exploring various care options such as day centres and in-home care.

How to Support Someone With Early Onset Dementia

If you find yourself caring for a loved one who is now living with dementia, particularly a young person, it can be challenging to know how best to support them. Because the diagnosis often comes during a person’s prime working and family years, family members may need to take on a new role or adjust daily routines.

Educate yourself:

In the same way that it is important for the individual living with young onset dementia to learn about the condition, it is also vital that loved ones do the same to understand symptoms and progression better

Be patient and flexible:

Ensure that you, the loved ones, try to adapt to changes in communication and behaviour without judgement. Confusion and frustration are common emotions regularly felt by people living with dementia, so it is essential to be patient and understanding

Communicate:

It is crucial to ensure that both you and the person living with early-onset dementia have open lines of communication. You will both go through different emotions, and talking through it together will help you find the best coping strategies

Offer practical support:

A diagnosis in a young person often means there will be tasks that they will need support with or that they may want to be relieved from entirely. If they have young children, consider how you can help or assist them in seeking out childcare. There may be considerations that need to be made about their job or other responsibilities they may have

Attend appointments together:

Offer to go with your loved ones to medical appointments for support and understanding. Dementia can be very lonely and isolating, so it is essential to offer to share the mental load when you can

Seek out external help:

Whilst your support will be invaluable, it may be necessary to look into some care options for the future as their symptoms progress

What Help is Available to Those With Early Onset Dementia?

There is a wide range of support available for people living with young onset dementia, but it may take some persistence to access the right services, as many are designed with older adults in mind. Seeking help can significantly improve quality of life and provide essential tools for managing symptoms. There are many resources tailored to meet the complex needs of younger people with dementia and their families. Available support includes:

GPs: Doctors play a key role in monitoring health, coordinating referrals and managing symptoms
Social services: Social workers can help coordinate care plans and connect individuals with services in the community
Charities: Organisations like Alzheimer's Society and Dementia UK offer information, support groups, advocacy and resources tailored specifically to younger people
Day Centres: These offer structured activities, social interaction and respite for both individuals and their carers
Financial Support: Individuals may be eligible for benefits such as Personal Independence Payment (PIP), Carer’s Allowance or other financial aid
Home care: Support workers can assist with daily tasks such as cooking, cleaning and personal care
District nurses: These nurses provide medical care at home, including medication management and monitoring overall health

Are You Looking for a Social Approach to Day Care?

Day centres can offer a vital lifeline for people living with early onset dementia, offering much-needed structure, stimulation, and social connection outside the home. With tailored activities such as music, art, gentle exercise, and baking, day centres help maintain both cognitive and physical well-being in a safe and engaging environment.

For younger people with dementia, being around others in similar situations can reduce feelings of isolation and create a renewed sense of purpose and belonging. They also provide valuable respite for families and carers, with peace of mind that their loved one is receiving compassionate, professional care.

Find Out More About Our Day Centres

The Princes Centre is an award-winning community-run day centre based in Princes Risborough and Bourne End. We provide high-quality personalised care designed to support independence, nurture individual goals, and enhance wellbeing. Whether you're looking for regular care or just a few hours of support each week, we’re here to help.

Contact us today to arrange a visit, speak with our friendly team, or learn more about how we support people with early onset dementia.

For more information give us a call.

01844 345105

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