More Than a Diagnosis: Why I’m Choosing to Live Well

In the dementia community, the phrase "living well" can be a bit of a lightning rod. I’ve heard the critiques, and I understand them. Some feel it’s a form of toxic positivity (a shiny coat of paint over a very difficult reality). Others believe it suggests that if you aren't doing great, you’re somehow failing at having a disease.

They assert it masks the grief, the frustration, and the very real cognitive hurdles we face every single day. I get it. There are days when "living well" feels like a remote planet I don't have the coordinates for.

Despite the pushback, I’ve chosen to plant my flag in the "living well" camp. For me, this isn't about pretending I don't have bad days (or weeks). It’s about agency.

Here is why I will continue to describe myself this way:

• It Reclaims My Identity: When I say that I am a person who happens to have dementia, not a "dementia patient" who happens to be a person, I'm making a deliberate statement. I'm choosing to prioritise my humanity over my condition, acknowledging that I have thoughts, feelings, and experiences that extend far beyond my diagnosis. This perspective allows me to focus on my strengths, passions, and values, rather than being reduced to a label or a stereotype.
  

• It Values the Present: Living with dementia has taught me to appreciate the present moment. When the future feels uncertain or limited, the "now" becomes incredibly vivid. I find joy in the simple things, like sharing a meal with loved ones or laughing at a misplaced set of keys. These moments may seem insignificant to some, but they bring me happiness and remind me that life is still worth living.
  

• It’s an Act of Defiance: Choosing to live well with dementia is, in itself, an act of defiance. It means refusing to let the disease dictate my life or define my identity. Instead, I focus on finding purpose and meaning through advocacy, hobbies, and connections with others. By doing so, I'm saying that dementia doesn't get to win today – I'm taking control of my life, and I'm determined to make the most of it.
  

• It Shifts the Narrative: The dominant narrative around dementia often focuses on the end stages and the tragedy of the condition. However, this approach can be damaging, as it robs newly diagnosed individuals of the hope and optimism they need to move forward. By sharing my story and emphasising the importance of living well, I hope to shift the narrative and offer a more balanced perspective.

I want to show that life with dementia is still a life worth living, and that there is hope and joy to be found, even in the midst of challenges.

Living well doesn’t mean living perfectly. It means living with intention, even when our brains are taking an unscheduled detour.

For me, living well with dementia involves using tools like Post-it notes and my smartphone calendar to stay organised and focused. It means being honest about what I need, seeking support when necessary, staying active in my community, and refusing to be embarrassed about my condition.

"Living well" is my foundation of hope and resilience, proving I can still love, laugh, and contribute—no diagnosis can take that possibility from me. I encourage others to do the same.

Over to you

If you are walking this path, or supporting someone who is, my message to you is this: Do not let your diagnosis write the rest of your story for you.

1. Seek Connection: Don't retreat or isolate yourself. Find your tribe, whether it's an online group, a local cafe or a social group. Connection and community are vital for emotional and mental well-being.
   

2. Focus on the "Can": Rather than mourning what you can't do anymore, focus on what you can do today. Celebrate your strengths and abilities, and find ways to build on them.
   

3. Demand Visibility: Don't hide or be ashamed of your condition. The world needs to see that life with dementia is still a life worth living. By sharing your story and being visible, you can help shift the narrative and promote greater understanding and acceptance.
   

Let’s not wait for the perfect moment—start living well today, just as you are. Reach out, share your story, and get involved in your community. Our voices matter, our presence is meaningful, and our joy is an act of strength. Join me in building a more inclusive and supportive community for people with dementia. Will you take the next step?

By embracing the concept of "living well" with dementia, we CAN reclaim our identities, value the present moment, and find purpose and meaning in our lives. We CAN shift the narrative around dementia to promote a more positive, hopeful perspective and inspire others to do the same, creating a ripple effect of resilience and hope that benefits individuals and communities around the world.