My life changed dramatically when, at 55-years of age, I was diagnosed with young-onset Alzheimer’s disease.

Immediately after my diagnosis I needed time to take stock and consider my future. Before it, I had believed that dementia only affected people in their 70s. This is one of the many challenges of dementia – not enough people know about the condition or understand how it affects people’s lives.

I was mindful of what I had said to my wife on the day of my diagnosis. I remember saying, “One door is closing but another door will open.” I have been fortunate to be able to benefit from campaigning opportunities presented to me by Alzheimer’s Society.

At the time I was working as a head teacher. My time was spent helping children shape and develop skills that would enable them to become active members of society – in communities that would value and respect them. Now, eight years later, my days are spent ensuring that people with dementia also get access to these same basic rights and opportunities.

People with dementia deserve the right to live the life we want and continue to do the things we enjoy. Yet, sadly, many of us face dementia alone, without adequate support and we end up isolated.

But this can change. There are things we can all do to make a difference. This Dementia Action Week, (21st-27th May), I want to urge everyone to unite and take actions – big or small – that will make a huge difference to people affected by dementia – like me.

I am an ambassador for Alzheimer’s Society. Last year, I was involved in the development of the charity’s Dementia Statements, which set out the fundamental rights of every person with dementia. Whilst I am passionate about all of the statements the two words that stand out for me most are ‘we’ and ‘rights’ - as dementia doesn’t just affect the person with dementia, it affects those closest to them as well. I have these statements glued in my diary, which I take everywhere with me. This way I am reminded every day of where society needs to focus. From helping someone in the street who may look a little lost and in need of help to asking us questions about our condition – make us feel seen, heard and empowered.

Below, my three top tips for anyone who wants to help make a difference:

 

 

1. Don’t label me

Yes, I have dementia, but it doesn’t define me. Nor should it limit the choices available to me. People with dementia still have a lot to contribute, whether that’s in conversations, carrying on in our jobs where possible or campaigning to improve the lives of people affected by dementia. We still have passions and interests; let us continue to fulfil them.

 

2. Support me to support you

Remaining independent for as long as possible is something everyone with dementia wants to achieve – but to help us do this our communities need to work with us. There are already over 350 Alzheimer’s Society Dementia-Friendly Communities – including organisations and businesses – making a difference. But more can be done.  

If you own a business, listen to me when I tell you that signs aren’t clear enough or that we need more seated areas on a shop floor to help me when I get tired. Making these small changes will enable me to thrive for as long as possible.

 

3. Challenge the stigma

There are over 2.4 million Alzheimer’s Society’s Dementia Friends taking action to change the way the world thinks and acts about dementia – why not sign up to a session near you so you can find out how to directly help people affected?

 


To get involved this Dementia Action Week and unite against dementia, visit alzheimers.org.uk/DAW