News

Dealing With A Dementia Diagnosis

Brave Peter tells his dementia diagnosis story, and how a dementia adviser saved his life

"It was the 30-minute meeting that changed my life," Peter Lyttle admits.

At the age of just 58, hotelier Peter was diagnosed with vascular dementia. He was a broken man, alone, terrified and immediately convinced that his life was over.

Now, years later, he reflects with honesty and warmth about a brief encounter that he had at first rejected out of hand. The perseverance of one woman from a local Alzheimer's Society support group saved him.

Peter says, "When I first received my diagnosis everything started spiralling out of control so I decided - and I'm so ashamed to admit this now - that I was going to end it all. I was feeling low and suicidal."

But days later, a letter landed on the doormat from Alzheimer's Society. It was an invitation to a coffee morning for people with dementia.

Initially Peter felt embarrassed and slightly offended by the Society's invitation to a Dementia Café. But after promising his brother he'd try it he went along.

Peter recalls, "I went along and spoke to a dementia adviser called Elaine. I told her straight off: 'I'm not staying. Everyone here is older than I am and I don't fit in'."

She replied, 'That's fine.' But as I turned to walk away, she added, 'But don't think you’re going to get away so easily'."

After their brief exchange at the café, Elaine decided to visit Peter at his home the following morning for a chat. It was this sit-down that had a profound effect on him. They talked about Alzheimer's Society and how people with dementia can still lead active and meaningful lives.

Peter says, "Within half an hour it was like someone had turned a light switch back on and I went back to being me."

Across the United Kingdom dementia diagnosis rates are at an alarming five-year low and tens of thousands of people are living without a confirmed diagnosis.

Globally, dementia is one of the biggest health challenges we face. There are nearly 57.4 million people living with dementia worldwide and an estimated 900,000 people living with dementia in the UK.

Early diagnosis is crucial to managing symptoms.

Nine in 10 people with dementia have said that they benefitted from getting a diagnosis, allowing more time to plan for the future and unlock the door to treatment, care, and support.

Player Support

Funding raised by players of People's Postcode Lottery and awarded by Postcode Care Trust allows Alzheimer's Society to help those living with a dementia diagnosis. Here's an outline of what to expect.

First Things First - See Your GP

If you or your loved ones are worried about experiencing dementia symptoms, you should visit your GP who will assess what's likely to be causing the problem.

Referral

The GP may refer you to have an assessment at a local memory service. These specialist units have health professionals skilled in diagnosing conditions that cause dementia-like symptoms. The GP may also ask for blood tests and brain scans, which will help to get a more accurate diagnosis.

Assessment

The assessment will involve a conversation with a health professional, talking about how your symptoms affect your daily life and how long they've been going on for. They may also ask you to do some written tests that show how different aspects of thinking are affected. It can be helpful for someone close to you to be there to support you.

Diagnosis

Once the assessment is complete, the specialist will share their diagnosis and tell you what may be causing your symptoms. If the specialist tells you that you have dementia, they will confirm what type of dementia you have. You will be offered ongoing support to help you understand what this means and to help you come to terms with your diagnosis.

Next Steps

A dementia diagnosis can be daunting and Alzheimer's Society's website has lots of useful information and advice to help prepare you and your family. You can also call the charity's Dementia Connect support line on 0333 150 3456 to speak to a trained Dementia Adviser, who can provide practical advice and emotional support.

How Alzheimer's Society Can Help

Alzheimer's Society's online hub contains advice and support, from information on memory loss and other symptoms, what to expect from a meeting with a GP, along with their downloadable 'Symptoms Checklist (opens in new tab)'.

What Support Is Alzheimer's Society Providing?

Alzheimer's Society is there for everyone affected by dementia, around the clock, no matter where you are or what you're going through, you can turn to the Society for support, help and advice.

Their Dementia Connect support line provides consistent support throughout England and Wales and is a simple, single point of referral that works hand in hand with the clinical and social care people receive, helping them to take back control of their lives and live independently for longer.

Support from players of People's Postcode Lottery helps to fund the face-to-face Dementia Advisers who offer post diagnosis support to help people with dementia. Their support ensures people diagnosed with dementia have better access to health, community, housing, and care services, as well as providing crucial emotional support, so people with dementia can take control of their condition and live the life they choose.

Alzheimer's Society is helping people take their first step towards a dementia diagnosis. If you're worried about your memory, or that of a loved one, visit the Alzheimer's Society website (opens in new tab).

Peter's Mission

Meeting Elaine transformed Peter's outlook, helping him regain his self-esteem and get his old confidence back.

He says, "She made me realise that there is life after your diagnosis. That lady saved my life. She really saved my life. I can never thank her enough for what she did."

Having had that light switch turned back on, Peter is proof that people can live well with dementia. He is now dedicated to helping others get over the shock of their diagnosis and get on with their lives in the best way they can.

Looking To The Future

Peter now volunteers with Alzheimer's Society to ensure no-one else feels as isolated after their diagnosis as he did. He gives talks to medical students at colleges in Preston and Blackpool and has started his own dementia cafés for people of his own age and their family and friends.

Seven years after his dementia diagnosis, Peter is as active as ever. Passionate about supporting Alzheimer's Society, he is helping in almost any way he can, from speaking at special events to training up staff.

Peter admits he's never been busier and is showing no signs of slowing down. Perhaps what's most inspiring is that Peter's motivation is other people - he says his work has never been about him. It's simply that he doesn't want anyone else to go through what he went through.