KYN's Guide to Early Onset Dementia

Early onset dementia, diagnosed before age 65, has distinctive implications for diagnosis, family impact, and care needs compared to dementia arising in later life. Recognising changes promptly, obtaining accurate diagnoses and creating supportive environments are key.

At KYN, our mission is to support individuals to live fully and meaningfully at every stage of life through specialised, luxurious dementia care that enables your loved one to live their life. For younger individuals developing dementia symptoms, we strive to facilitate continued purpose, joy and dignity through specialised care approaches tailored to their needs.

What Causes Early Onset Dementia?

While Alzheimer's disease is the most frequent cause of people living with young-onset dementia, several other conditions can also cause it in this age group. These include:

• Frontotemporal dementia - This type slowly affects the parts of the brain that control things like judgement, empathy and impulse control.
• Vascular dementia - This form of dementia happens when strokes or tiny blockages in blood vessels damage thinking and memory. Memory loss is extremely common when it comes to young onset dementia.
• Alcohol-related brain damage - Chronic alcohol abuse can lead to Wernicke-Korsakoff syndrome, causing memory problems and confusion.
• Lewy body dementia - This type involves fluctuating thinking, hallucinations and sometimes tremors or stiffness, similar to Parkinson's disease.
• Huntington's disease - An inherited condition where a faulty gene damages brain cells, leading to widespread difficulties with movement and thinking.
• Traumatic brain injuries - Repeated blows to the head, even seemingly minor ones, can increase the risk of dementia later in life.
• Metabolic disorders - These conditions can disrupt how the body uses energy or absorbs nutrients, sometimes affecting brain function and causing memory problems.
• HIV-related cognitive disorder - In some cases, HIV infection can lead to inflammation in the brain, affecting mental abilities like memory and focus.

Dementia specialists carefully consider various factors to understand what might be causing memory and thinking problems. They weigh up many possibilities, from blood flow issues to rare genetic conditions. This careful investigation leads to an accurate diagnosis, which is critical to creating a personalised care plan that fits each individual's needs.

Unique Effects on Younger Individuals and Families

While diagnosis is crucial for any type of dementia, it's especially important for younger people. This is because early-onset dementia can significantly impact their independence, careers, parenting roles, and social connections in ways that are less common when dementia develops later in life. However, there are coping strategies that can help manage these difficulties, such as:

Accessing Social Services Supports

Social services like counselling, adult day programmes, respite care and support groups can be lifelines. They offer emotional support, practical tips for adapting to everyday life and the chance to connect with people who share your experiences.

Addressing Workplace Needs

If your loved one is still working, talk openly with their employer about options to help them stay on the job, like flexible hours or reduced workload. You can even consider early retirement if it seems right. Seeking legal advice can also help you plan financially for the future.

Asking Family Members to Help Care for Children

Parenting with young children is a big responsibility, so a parent living with dementia may need extra support. Reach out to trusted family members who can help with childcare and share the load. Keeping routines consistent and explaining changes in simple, clear terms can help children adjust.

If managing family dynamics feels challenging, consider family therapy to navigate conversations and address conflicts openly.

Keeping Up With Hobbies

Even as your loved one’s abilities change, they can still find joy and purpose in many ways. Encourage them to do the things they love and explore new interests, whether it's painting, playing music, connecting with friends or spending time in nature.

Joining Early Onset Dementia Communities

Early-onset dementia communities offer support, resources and the chance to connect with others who understand. Explore online and in-person groups to share strategies, discover individual treatment options and trials, and learn about different care paths.

Adapting Care Approaches for Younger Individuals

Specialised care strategies tailored to younger individuals living with dementia recognise their unique physical, cognitive and emotional needs compared to older adults. Age-appropriate care pathways can incorporate:

• Exercise plans that value strength, stamina and mobility to maintain health and self-image.
• Technology aids and training on devices to enable ongoing connection and interests.
• Outings, volunteer work, clubs and social gatherings for meaningful engagement.
• Reminiscence incorporating teenage and adult milestones and memories.
• Counselling that addresses self-worth, anxiety over the future and identity shifts.
• Encouraging friendship and support between those with young-onset dementia. Peers deeply understand the experience.
• Fostering independence in tasks they can still manage rather than taking over.
• Involving the individual in care decisions through open communication.

Nurturing an accessible environment that values younger individuals' abilities with young onset dementia is crucial for meaningful living.

KYN Provides Specialised Dementia Care

At KYN, our expert interdisciplinary team aims to enhance the quality of life for all we serve. We regard supporting individuals living with dementia as a particular privilege.

Our staff training emphasises appropriate care strategies tailored to dementia needs. We facilitate engaging peer communities, promote independence and preserve dignity.

Please contact KYN if your loved one is experiencing cognitive changes. We will collaborate on personalised care in a welcoming environment. Contact us at +44 (0) 20 3535 1923 or email enquiries@kyn.co.uk to learn more.