Supporting Someone with Young-Onset Dementia: A Family Guide

22 Aug

When a loved one is diagnosed with Young Onset Dementia (YOD)—meaning symptoms appear before the age of 65—it can feel like the ground shifts beneath your feet. It often comes as a shock, especially because dementia is widely (and wrongly) thought of as an older person’s condition.

At Memory Matters, we understand the unique challenges families face when dementia affects someone in the prime of life. You might be juggling work, parenting, financial commitments, and your own emotional well-being, all while supporting your loved one through an unfamiliar and difficult journey.

This guide offers practical advice, emotional support, and hope to help you navigate the path ahead.

Understanding Young-Onset Dementia

Young Onset Dementia is less common than late-onset dementia, but still affects thousands of people in the UK. The symptoms can be similar—memory loss, confusion, changes in personality—but the impact is often greater due to life stage. People may still be working, raising children, or managing mortgages when the diagnosis comes.

Common types of Young Onset Dementia include:

Alzheimer's disease
Frontotemporal dementia
Vascular dementia
Dementia with Lewy bodies

Early diagnosis is crucial for accessing the right support and planning for the future.

Emotional Impact on Families

A diagnosis of YOD doesn't just affect the person living with it—it deeply impacts family and friends too. Partners often take on a new caring role, children may struggle to understand the changes, and extended family might not know how to help.

Common feelings among family members:

Shock and grief at the diagnosis
Anger or frustration about how life has changed
Isolation, especially if peers can’t relate to your experience
Guilt about not always coping or getting it right

These feelings are all valid. It’s important to talk, seek help, and remember: you are not alone.

Tips for Supporting Your Loved One

Here are some ways you can provide meaningful support while also looking after yourself:

1. Get informed

Learn about the specific type of dementia your loved one has. Understanding the condition helps you respond with empathy and confidence.

2. Keep communication open

Use short, clear sentences and allow extra time for responses. Be patient and calm, even when things are difficult.

3. Adapt daily routines

Structure and predictability can be reassuring. Break tasks into small, manageable steps and celebrate successes, however small.

4. Encourage independence

Support your loved one to stay as independent as possible for as long as possible. Focus on what they can do rather than what they’ve lost.

5. Use support services

Reach out to local groups, dementia advisors, and charities like Memory Matters. Don’t wait for a crisis—early support makes a difference.

Caring for the Carer

Supporting someone with YOD can be emotionally and physically exhausting. It’s not selfish to take time for yourself—it’s essential.

Stay connected with friends and loved ones
Join a carers' support group
Explore respite care options
Don’t be afraid to ask for help

At Memory Matters, we believe carers are unsung heroes. You deserve support too.

Supporting Children and Young People

When dementia affects a parent, grandparent, or close relative, children may feel scared, confused, or even blame themselves. Be honest with them using age-appropriate language, and reassure them that their loved one still loves them, even if they behave differently.

Resources such as books, animations, and young carers groups can be helpful tools for opening up these conversations.

Looking Ahead with Hope

While there’s currently no cure for dementia, there is still life to be lived—and joy to be found. With the right support, people with Young Onset Dementia can continue to enjoy relationships, hobbies, and meaningful moments.

At Memory Matters, we are here to walk this journey with you. From friendly advice to a Young Onset group specifically for those living with YOD and their loved ones, we offer a wide range of support designed to meet the needs of families just like yours.