Hartlepool man uses his experience of dementia to help others

A former project manager whose life was turned upside after developing Alzheimer's in his 40s is aiming to help others in his situation.

Michael Booth, from Hartlepool, has just written a detailed information booklet to support newly diagnosed people, and those affected by dementia.

"The aim is to help people understand their diagnosis and how they can plan for their future, getting the support they need now and for that future," he said.

"People can sometimes panic after a diagnosis, which can lead to them becoming shut off, with no support or understanding. I want them to know they are not alone."

Michael, an involvement member with Tees, Esk and Wear Valleys NHS Foundation Trust (TEWV), was only 46 when he was diagnosed with dementia - just months after his mother died from the disease.

Six years on, he works tirelessly to raise awareness of the condition and has published a book, Dementia: You are not alone, which has sold around the world.

"The diagnosis was a real blow for me, especially as I'd just watched my mum go through it. It felt like a kick in the stomach at the time, and still does," he said.

"It's a terminal disease, there is no cure, so I had to come to terms with it. Writing the book helped me do that, and writing the leaflet will hopefully help others.

"It's so important to be open about dementia. I hope my booklet provides advice which people find useful, as there is so much misinformation and stigma out there."

Michael was born in Hartlepool but moved to South Africa with his family as a child. He returned home to help out when his grandfather showed signs of dementia.

Not long after, his mum Christine started struggling with her own mental health and, at just 55, she was diagnosed with young onset Alzheimer's.

"I helped my dad care for my mum and, as time went on, I found myself forgetting where I was going, forgetting my words and having balance problems," said Michael.

"My mum was in palliative care by this time, and I put it down to stress. But one of the mental health nurses caring for my mum suggested I get tested, so I did."

Christine died just before the first Covid lockdown of 2020, at the age of just 66. Only a few months later, Michael received his own devastating diagnosis.

"I'd thought I had a whole future ahead, then I didn't. But I want people living with dementia to know that it's not the end. It might feel like it is, but it's not," he said.

Michael has drawn on the expertise of those he has met while giving talks and volunteering for dementia charities to ensure his leaflet is both factual and practical.

The free advice-packed booklet, which focuses on the Hartlepool area, has been funded by The Greatham Foundation and Dementia Friendly Hartlepool

"My mum was diagnosed 10 years before I was diagnosed. During that time nothing really changed. I was given the exact same leaflets as my mum was," said Michael.

"None of them were about my diagnosis, and I felt that needed to change. People need to know about their diagnosis, how to accept it, and what they need to do.

"My leaflet contains the information I wish I knew when I was diagnosed. It's a guide on who to turn to for support, who can answer questions, and what to do next.

"I hope it will take away the confusion and anxiety of the diagnosis."

Now that work on the leaflet is completed, Michael is continuing his mission to raise dementia awareness and is currently working on a training project for carers.

"We need to be open and honest about dementia. There's no one-size fits all solution. A personal approach in advice, guidance and care is needed," he said.

Gemma Gray, an involvement and engagement facilitator who works with Michael on projects within TEWV, said:

"Michael is an inspiration. He uses his lived experience to help others and our services. His involvement is so important in helping people understand dementia."

• For a copy of Michael's leaflet email: [email protected]