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How to Live with Early-Onset Dementia

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Ann Johnson, resident at Sunrise of Hale Barns and former nurse. Ann was diagnosed with early-onset dementia in 2005, at the age of 52

Our understanding of dementia has never been greater, and more research than ever before is being devoted to preventing the condition, as well as supporting those already living with it. We know that dementia causes memory loss, confusion, language difficulties, and changes in mood and behaviour, and that 1 in 6 people over the age of 80 live with the condition.

Far fewer people, however, are aware that dementia can strike very early in life.

In the UK, more than 40,000 people under the age of 65 have been diagnosed with the condition.

My own diagnosis of early-onset dementia came when I was 52, at which time I had been enjoying a successful career as a nurse and Lecturer at the University of Manchester. The diagnosis was a seismic event in my life, and has had a profound impact on my daily activities.

What might come as a surprise is that this impact has been both positive and negative. My condition is a continual burden – but it has also empowered me to speak out about an overlooked topic to an ever-increasing audience.

A continually challenging condition

My diagnosis at 52 came as a great shock to me, and certainly made life very difficult at a time when I wanted to advance my career, spend time with friends and family, and be financially secure. Perhaps the greatest challenge of living with early-onset dementia is the sudden and unexpected discovery that your years ahead are not quite going to be what you hoped they would be.

It was both a curse and a blessing that to some extent, I knew what was coming. I had watched my father struggle with dementia, gradually losing the abilities that he had once displayed with such ease.

In your 50s you expect to be healthy, independent and looking forward to retirement, not burdened with a condition that is usually associated with old age – in short, not struggling to count money, tell the time, or go to the supermarket.

There are other practical difficulties linked to early-onset dementia. For example, employers often lack the knowledge to support a member of staff with the condition. Financial problems can therefore arise, too, due to the lost years of work that may result from a diagnosis.

It may even be difficult to be accurately diagnosed with early-onset dementia in the first place, given that we still do not fully understand the condition. Those with it are frequently informed that they are stressed or depressed, beginning a long, drawn-out process of delay and doubt, after which the final, concrete diagnosis is almost a relief.

When the condition begins to manifest itself, from the first signs of cognitive difficulty to the regular doctor visits, it is so important that those closest to you stand by your side, experiencing every up and down.

For everyone involved, it is crucial to know what exactly is causing the problem, and what can be done to ensure that the person who has been diagnosed can live the happiest and most fulfilling life possible. And that is precisely where the more uplifting side of my story comes in.

It is through understanding my own abilities and limitations that I am able to use my talents, prioritise, and maintain an active working life which I feel blessed to lead.

The importance of speaking out

I never even considered giving up my working life after the diagnosis. Instead, I devoted myself to raising awareness of early-onset dementia, educating others about the condition by giving speeches and lectures all around the country. Those of us who have been diagnosed with early-onset dementia can provide a unique insight into the trials and tribulations of the condition, and the ways it has shaped our day-to-day activity.

I have been fortunate enough to help kick-start the Department of Health’s dementia awareness campaign, and attend conferences on dementia in London and Dublin, meeting high-profile figures including the former Prime Minister. I have greatly enjoyed my time as Lecturer at the University of Manchester, teaching students about dementia and neurodegenerative disease. And I was immensely proud to receive an MBE, as well as an honorary doctorate from the University of Bolton, for enhancing public understanding of early-onset dementia.

As well as my efforts on a national level, I am also championing the efforts of Hale Barns in Greater Manchester to meet the Prime Minister’s Challenge on Dementia – an unprecedented programme of action to create dementia-friendly communities across the nation.

My residence at the Sunrise of Hale Barns care home has allowed me to champion a dementia-friendly environment to my fellow residents and the local community. Together, we hope to help establish the UK as the best country in the world for dementia care.

Speaking out about early-onset dementia moves us towards everybody in society having at least a basic awareness of the condition, and understanding how to support those who have been diagnosed.

Not everyone will relish the thought of speaking to a large audience on a regular basis, and I completely understand that my own path will be very different to that which many others will choose to take. We all have our own unique talents, and can all make a mark in the world in our own way. But whether it is giving a public speech or talking to a small group of friends or neighbours, enlightening people about early-onset dementia will help improve the lives of many.

Love and be loved

The importance of supporting one another is the most important message that I have for those living with early-onset dementia and their loved ones. Always be compassionate, always be understanding and always take time to consider the other person’s point of view. As important as it is to understand the science behind early-onset dementia, it is equally vital to support those with the condition emotionally. I will finish this piece with the message that I always conclude my speeches and lectures with: “Love me and be with me, and I will love you forever.” 

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