A Journey of Strength, Hope, and Resilience: Emily Ong’s Story
We’re thrilled to bring you an exclusive 6-part series featuring the inspiring journey of Emily Ong—a wife, mother, and relentless advocate redefining what it means to live with young-onset Alzheimer’s. Emily uses her firsthand experience to drive change as a Dementia Expert by Experience, passionately addressing issues like rehabilitation, disability rights, environmental influences on dementia, and the challenges faced by women and care partners.
Diagnosed in her 50s, Emily shares her raw and real experience navigating the challenges of this condition, from the emotional rollercoaster of the diagnosis to the powerful lessons in resilience, independence, and the importance of family support. Her voice resonates in conversations about employment and dignity for those navigating cognitive impairments, empowering others to embrace hope and action. Through her advocacy, Emily is turning personal challenges into a powerful force for global awareness and positive change.
In this series, Emily opens her heart to show the world what it truly means to live with Alzheimer’s at a young age, offering hope, practical advice, and a new perspective on caregiving, long-term planning, and emotional well-being.
Don’t miss out on Emily’s incredible story – stay tuned for each part of the series!
Navigating Behavioural Changes
When I first received the misdiagnosis of Alzheimer’s, I thought I had answers, but the truth was still elusive. After more tests and observations, I was informed that I might have frontotemporal dementia (FTD). It was a difficult pill to swallow, especially since the changes in my behaviour were so unlike the person I once was.
The Role of Family in Recognition
One of the turning points in my diagnosis came from my daughter. My daughter had mentioned to her professor that I was losing the ability to act in socially appropriate ways, and it caught her attention. Those observations from my family became an important part of figuring out what was happening to me.
Reflecting on those changes, I realise how strange and foreign they seemed. “I don’t think, in my normal self, I would have done things like this,” I said to myself many times. For example, I’d make comments that didn’t seem fitting for the situation—something inappropriate during a serious moment, like when someone was feeling sad. It felt like my emotional filters were slipping away. In public, I might speak louder than necessary, not realizing that the environment required a quieter tone.
The Impact of Behavioural Symptoms
These changes were particularly difficult because they were so stark compared to how I used to behave. I used to be good at reading a room, understanding how to act in social situations. But those skills, things I once took for granted, started to slip away. I felt like I was losing control over the very part of me that allowed me to connect with others.
Doctors closely monitored my condition over the next one to two years, as they typically do with frontotemporal dementia, to see if the symptoms would continue to worsen. Interestingly, my symptoms didn’t get worse—they simply stayed the same, at least for the time being. “It didn’t get worse,” I would say, “it just stayed around that level.”
Revisiting the Diagnosis
As my symptoms remained stable, doctors began to reconsider the original diagnosis. They revised it back to a more ambiguous “possibly young-onset dementia” diagnosis, leaving room for uncertainty. Though the label had shifted, what remained constant were the challenges I faced every day.
It was a reminder that young-onset dementia doesn’t follow a simple path. The journey can be unpredictable, and labels don’t always provide clarity, but the need for support and understanding is crucial no matter the diagnosis.
Living with Uncertainty
Living with this uncertainty has been one of the toughest aspects of the journey. The labels might change, but the challenges I face—feeling disconnected from the person I used to be and trying to navigate a world that doesn’t always understand my new reality—remain constant.
However, I’ve learned to accept where I am. “This is my diagnosis,” I’ve come to say to myself, “and I’m learning to adapt to it.”
Tips for Navigating Behavioural Changes in Young-Onset Dementia
- Listen to Your Loved Ones: Often, the people closest to you notice changes before you do. Their observations can be a crucial part of recognizing the early signs. Trust their insights and stay open to their concerns.
- Seek Medical Advice Early: Don’t wait for things to get worse before seeking help. If you notice behavioural changes, no matter how small, consult a healthcare professional who can guide you through the process.
- Be Patient with Yourself: Learning to live with dementia is a process. While the journey can be frustrating and confusing, patience with yourself and your symptoms is key. It’s okay to accept where you are, even when the future feels uncertain.
- Stay Connected with Family: Your family and friends are your support system. Share your experiences, even the ones that feel uncomfortable or confusing, with them. They can help you through the emotional and practical challenges.
- Advocate for Comprehensive Care: Ensure you’re receiving thorough and ongoing evaluations. Young-onset dementia can be elusive, and a misdiagnosis can lead to unnecessary delays. Stay persistent in seeking the right care.
Through sharing my story, I hope to raise awareness about the behavioural changes that can signal young-onset dementia. By recognizing the signs early, we can seek help sooner and adapt more effectively to the challenges that lie ahead. We don’t have to face this journey alone.
Don’t miss out on Emily’s incredible story – stay tuned for each part of the series!
For more articles on Dementia, Active Ageing and Help for Caregivers, please check our articles at Hovicare.com.
