Independent Living with Dementia: My Guide to Help, Hope, and Independence

Empowering Independent Living: Navigating Dementia with Hope and self-reliance.

Introduction

When I was diagnosed with dementia, one of the first questions I asked myself was:

"Will I still be able to live independently?"

It's a question many of us face — and it's not just about where we live or whether we can make a cup of tea by ourselves. For me, independence means having control over my life, making my own decisions, and staying connected to the things and people that matter.

This blog is written for three distinct groups:

• People living with dementia — because I know first-hand how important practical strategies and emotional resilience are.

• Academics — because your research shapes the policies, tools, and supports that either protect or erode our independence.

• Carers — because you hold a unique role in enabling independence without accidentally taking it away.
  

I'll share my own journey, break down what independence really means, and give actionable advice to help us keep living the lives we choose.

 I want this to be informative but also encouraging — a resource rooted in lived experience but backed up by clear, logical guidance.

Throughout this, I'll keep coming back to three words that have become my anchors: help, hope, and independence.

Part 1 – What Independence Really Means When You Have Dementia

Understanding the Concept

When most people think of independence, they imagine doing everything on their own. But that's not realistic — not for anyone, and especially not for those of us living with dementia.

For me, independence means:

1. Making my own choices — even if I need help understanding my options.

2. Carrying out everyday tasks in ways that work for me now, not just how I did them in the past.

3. Maintaining my identity — still being the person I've always been, even if some abilities change.

Key point: Independence is not the same as isolation. It's about having control over how things happen, not doing everything alone.

The Three Pillars of Independence

Over time, I've realised independence rests on three interconnected pillars:

1. Self-determination — retaining the power to make decisions about my life.

2. Practical skills — maintaining the abilities and tools needed for daily living.

3. Support networks — having the right help, from the right people, at the right time.
   

If one of these pillars weakens, my independence becomes harder to maintain. Strengthen all three, and I can continue to live the life I choose.

Common Myths

• Myth: "Once you're diagnosed, you lose your independence immediately."

• Reality: Many of us live independently for years with the right help and strategies.

• Myth: "Accepting help means giving up independence."

• Reality: The right kind of help protects independence by making tasks safer and more manageable.

• Myth: "Independence means doing things exactly as you did before."

• Reality: Independence is about choice, not sticking to outdated routines.
  

Part 2 – My Journey into Living Independently with Dementia

Early Reactions

When I was first diagnosed, I felt a mix of fear and determination. I was worried about losing control of my life, but I also felt a strong urge to plan ahead.

The best decisions I made early on were:

• Listing what I could still do confidently — it boosted my sense of capability.

• Identifying the areas I needed help with — so I could put solutions in place before things became urgent.

• Talking openly with my family — so they knew how to support without taking over.
  

Balancing Fear with Hope

Hope wasn't just a vague feeling — it became a practical tool.

 I focused on finding ways to adapt tasks rather than abandon them:

• Cooking simpler meals but still preparing my favourites.

• Using contactless payment instead of cash to reduce stress.

• Setting phone reminders for appointments and medication.
  

Every adaptation was a small win, and those wins built momentum.

The Turning Point

The fundamental shift happened when I accepted that help doesn't reduce independence — it enables it.

 For example:

• My carer (my long-suffering missus Pam) sometimes helps me choose what to wear each day.

• Online research helped me to make my kitchen safer without making it feel clinical.

• My smart speaker reminds me to take medication — but I decide when I do.
  

Part 3 – Creating a Supportive Environment

A supportive environment is the foundation of independence. It reduces the cognitive load, minimises risks, and boosts confidence.

Home Adaptations

• Clear labelling on cupboards and drawers.

• Simplified layouts — keeping frequently used items in easy reach.

• Good lighting — reducing shadows that can confuse.

• Contrasting colours — helping identify objects and edges.
  

Technology as a Partner

• Calendar and reminder apps — keeping track of appointments.

• GPS trackers — ensuring I can get help if I become disoriented.

• Voice-activated assistants — answering questions and controlling lights or appliances.
  

Community Resources

• Local dementia-friendly cafés and activity groups.

• Charities offering peer support.

• Volunteer drivers and befriending services.
  

Part 4 – Maintaining Practical Skills

Managing Finances

• Keep a simple budget — using one account for daily spending.

• Set up direct debits for regular bills.

• Use contactless cards to reduce the need to handle cash.
  

Shopping and Cooking

• Shop at dementia-friendly supermarkets with clear signage.

• Use meal planners to reduce decision fatigue.

• Prepare ingredients in advance for easier cooking.
  

Transport and Mobility

• Use familiar routes whenever possible.

• Carry an ID card with emergency contact details.

• Review driving safety regularly and plan for alternatives early.
  

Part 5 – Emotional and Psychological Side of Independence

Managing Anxiety

• Break tasks into small, manageable steps.

• Use routines to create predictability.

• Have a quiet space at home for moments of "overwhelm". This works so well for me...
  

The Role of Hope

Hope fuels motivation. Without it, independence can feel like a losing battle.

 I nurture hope by:

• Celebrating small achievements.

• Staying socially connected.

• Continuing hobbies, even in adapted forms.

• Writing blogs like this!
  

Accepting Help

Carers can support independence by:

• Offering assistance with, not for, the person.

• Respecting decisions even if they take longer to make.

• Encouraging, not overprotecting.
  

Part 6 – Collaboration Between People with Dementia, Academics, and Carers

Why Academics Need Lived Experience

Research that ignores lived experience risks producing impractical solutions.

 Including us in the process ensures:

• Tools and strategies reflect real-life challenges.

• Interventions support, not limit, independence.
  

How Carers Protect Independence

Carers can:

• Provide just enough help.

• Focus on abilities, not deficits.

• Support risk-taking within safe limits.
  

Part 7 – Planning for the Future

Adapting Over Time

• Review support needs regularly.

• Stay informed about new assistive technologies.

• Make changes before a crisis forces them.
  

Staying Social

• Maintain friendships.

• Join community activities.

• Use video calls to stay connected when travel is hard.
  

Recognising When to Accept More Help

Signs it may be time to adjust support:

• Increased anxiety about specific tasks.

• More frequent accidents or missed appointments.

• Withdrawal from activities due to fear of mistakes.
  

Conclusion – Independence as a Journey

Independence with dementia isn't static — it evolves.

 For me, it's about choice, dignity, and staying engaged, with the right help in place.

Key takeaways:

• Independence is not doing everything alone.

• Hope is fuel for maintaining autonomy.

• Help, given the right way, protects independence.
  

Call to action:

 If you're living with dementia, talk to your support network today about what independence means to you.

 If you're an academic, involve us in your research.

 If you're a carer, focus on enabling rather than replacing our abilities.

Together, we can make independent living not just a possibility, but a reality.