Making a Success of Dementia

A superhero figure soars through the sky, symbolizing resilience and strength in facing dementia, with the inspiring message "Making a success of dementia."

Why I'm Writing This

I expect I'll receive some criticism for what I'm about to say - indeed, I expect it. But I have to tell things the way I see them. Others will disagree, and that's their prerogative, but I'll stick by my guns until and unless they can convince me otherwise.

It's my contention that you can make a SUCCESS out of your dementia!

When I first heard the words "you have dementia", I felt as though the world had been turned upside down. Like so many people diagnosed with young-onset dementia, I was still working, still planning a future. Dementia wasn't supposed to arrive at this stage of my life—it was supposed to be something that happened to other people, much later.

But here I am, and here we are.

I'm nearly seven years into my journey now, so I decided to spend some time in serious reflection. The result is this blog.

The result is this blog. And the reason I'm writing it is simple: dementia is not the end of success - it just means that success looks different now.

I've learned through experience that with the right mindset, support, and practical tools, it's possible to live a fulfilling, purposeful, and even joyful life. I want to share what's worked for me, not as a neat instruction manual (because dementia is never neat), but as a collection of lived strategies that others can adapt.

This blog is long—on purpose. It's meant to be a guide, a conversation, and a toolbox. If you're living with dementia, or supporting someone who is, I hope this helps you see that life is still worth shaping, and that success is not only possible but achievable.

Understanding What "Success" Means in Dementia

When I talk about "success" in dementia, what I mean is that we need to let go of the usual checklists of achievements. For me, success is not about promotions, money, or ticking off grand bucket-list items.

For me, success means:

• Living each day with meaning and dignity

• Holding onto my identity and what makes me "me"

• Maintaining independence as much as possible

• Building and sustaining connections with others

• Continuing to contribute in ways that matter

• Learning to adapt, rather than simply giving up

Success is not about avoiding decline - it's about making the most of every moment, adapting with creativity, and refusing to let dementia silence me.

The Emotional Rollercoaster

Frankly, living with dementia isn't easy. There are moments of grief, frustration, and fear. But there are also unexpected discoveries of strength and resilience.

I've gone through the same stages of the grieving process that EVERYONE who receives a diagnosis experiences: denial, anger, sadness, acceptance - but then, for me, something more. A resolve to live well.

And what helped me most was:

• Naming my feelings: it's okay to grieve, but also okay to celebrate small wins.

• Talking openly: secrecy breeds shame, and I don't want shame in my life.

• Finding "my" people: connecting with others who "get it" gave me hope.

• Reframing dementia: not just as loss, but as an opportunity to live differently.

Practical Steps for Making a Success of Dementia

Here's the heart of this blog: the practical steps. These are the strategies, tools, and habits that help me live with dementia successfully.

1. Take Control of Your Diagnosis

• Learn about your type of dementia—knowledge really is power.

• Ask your doctor questions, no matter how small.

• Use your rights under the Freedom of Information laws to obtain ALL of your diagnosis notes

• Keep your medical documents in one easy-to-find place.
  

2. Build a Supportive Circle

• Tell people you trust—don’t go through this alone.

• Surround yourself with people who lift you up, not those who pity you.

• Join support groups (in person or online).
  

3. Create Routines That Work

• Stick to regular daily patterns—it reduces stress.

• Use alarms, reminders, or smart technology to stay on track.

• Simplify choices—lay out clothes, pre-plan your meals.
  

4. Use Technology Wisely

• Calendar apps for appointments.

• Voice assistants for reminders.

• GPS trackers for safe independence.

• Smart home devices (lights, heating, doors).
  

5. Look After Your Brain and Body

• Exercise: walking, swimming, yoga, chairobics.

• Eat a balanced diet, such as a Mediterranean-style diet.

• Sleep well - set a bedtime routine. I always read before bed - that works for me.

• Stay mentally active - crosswords, music, reading aloud.
  

6. Redesign Your Environment

• Clear clutter to reduce confusion (I must confess, I'm not too good at this - I'm a natural hoarder, but it's a good feeling to "blitz" the house every now and then)

• Use labels on cupboards and drawers.

• Keep essential things (keys, wallet) in the same place - they're the things I lose the most frequently

• Good lighting - helps to reduce my disorientation.
  

7. Stay Connected Socially

• Meet friends and family regularly—even short visits matter.

• Volunteer or contribute to community projects.

• Keep using your skills—adapt them if needed.
  

8. Financial and Legal Planning

• Get Powers of Attorney in place early.

• Organise wills and important documents.

• Seek financial advice for future care planning.
  

9. Find Purpose and Joy

• Explore hobbies—painting, gardening, singing (I run comedy workshops - great fun!).

• Celebrate achievements, however small.

• See how you can continue to use the skills you acquired during your working life (I enjoy working with the Alzheimer's Society Data Team to give them a User perspective)

• Write, blog, or share your story—it gives meaning and motivation to others.
  

10. Advocate for Yourself and Others

• Speak up about what helps you.

• Challenge stigma by being visible.

• Help design and change policy locally, nationally and internationally

• Join research projects—you're shaping the future.
  

My Stories of Adaptation

For example, when I could no longer manage my calendar efficiently to organise appointments, I didn't just stop contributing. Instead, I found ways to make it work. Doodle polls, calendar sharing apps, etc.

Another story: I frequently panicked when I lost track of where I'd put my house and car keys. Now, I keep them on a hook in the kitchen. It's a small adaptation, but for me, it means freedom.

It's these minor adaptations that add up to a life that feels manageable, even successful.

Living with Hope

Hope isn't about a cure - it's about quality of life.

I hold onto hope by:

• Setting small daily goals

• Staying curious about what's going on in the world - especially the world of dementia

• Actively seeking out opportunities

• Volunteering

• Believing my voice still matters.
  

The Future - With Courage, Not Fear

The truth is, my dementia will progress. But that doesn't mean I'm powerless. Every day is still mine to shape.

By planning ahead—legally, practically, emotionally—I free myself to live more fully in the present.

When opportunity knocks, don't slam the door on it - welcome it in!

Pete's Practical Steps Checklist

Here's a consolidated checklist you can use:

 ⏹️ Learn about your dementia type

 ⏹️ Build a supportive circle

 ⏹️ Create daily routines

 ⏹️ Use reminders and tech

⏹️  Exercise and eat well

⏹️  Declutter and label your environment

⏹️  Stay socially connected

⏹️  Get your legal/financial plans sorted

⏹️  Explore hobbies and things that give you joy

 ⏹️ Advocate for yourself and others

⏹️ Seek out opportunities

⏹️ Stay curious about the world.

If you're reading this as someone living with dementia: do not give up on yourself. Success is not about avoiding dementia—it's about living well with it.

If you're reading this as a carer, friend, or professional: see the person, not just the condition. Help us hold onto our dignity and independence.

And if you're part of society at large: challenge stigma. Listen to our voices. Support dementia-friendly communities. Believe in us.

Dementia is not the end of the story.

It's the start of a new chapter—one that can still be meaningful, joyful, and successful.

My call to action is this:

Please help me redefine success in dementia. Whether you're living with it, supporting someone, or shaping policies, let's commit to a world where dementia does not silence us, but strengthens our humanity.