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A man diagnosed with dementia at 46 said his diagnosis felt like 'a kick in the stomach' after he watched his mum live with it. Michael Booth has now written a detailed information
booklet to support newly diagnosed people, and those affected by dementia. The former project manager said: "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. 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 this new booklet will
hopefully help others. "It's so important to be open about dementia. I hope the 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 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 generic leaflets about dementia as my mum
was," said Michael. "None of them were about my diagnosis, and that just felt wrong. I felt that this needed to be changed. "People need to know about their diagnosis, how to
accept it, and what they need to do. My own 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 the Trust, 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] JOIN TEESSIDE LIVE'S WHATSAPP COMMUNITY FOR TOP STORIES AND BREAKING NEWS SENT DIRECTLY TO YOUR PHONE Teesside Live
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