Facing Dementia in Your 40s – Michael’s Story

In the UK, nearly 1 million people live with dementia. It’s often thought of as an illness that only affects older people — but that isn’t always the case. Around 7 in every 100 people diagnosed with dementia are under the age of 65. This is known as Young Onset Dementia, and it can affect people in their 40s, 50s, or 60s — sometimes even younger.

This is the reality for Michael and his family, who are navigating life with dementia far earlier than they ever expected. I spoke with Michael’s mum, Mary, and his sister, Caroline, about their journey — and the support that comes from across the whole family, including Phil and Pete, Michael’s brothers.

Michael is in his 40s. Before his diagnosis, he was a Customer Services Manager at Severn Trent Water, a devoted dad of three, and someone everyone knew for his friendly, chatty nature. As a young man, he was strong and competitive — excelling in shot put and javelin; “he could throw twice as far as anybody else” Caroline reminisces.

Caroline remembers Michael as her “cheeky baby brother,” full of fun and mischief. She recalls family holidays in Wells-next-the-Sea, where she taught him to crab fish. Their mum Mary laughs about his childhood habit of pressing his turned-up nose against every table he passed, always interested in everything. Life was busy, active, and full of laughter.

Left To Right [Caroline, Phil, Mary, Pete, Isaac & Michael]

The first signs of dementia were subtle but worrying. Michael started arriving at Caroline’s house very early in the morning before heading into work. His family knew something was wrong and began pushing for answers.

It wasn’t easy. Over three years, Michael was misdiagnosed with depression, and one time professionals dismissed his family’s concerns, even telling them to “Let him manage his on affairs.” Eventually, he received the devastating diagnosis of Young Onset Dementia — one that brought both relief and heartbreak. “This diagnosis affected everyone in the family, and we knew it was going to be especially difficult for him.” Michael’s Family

Although dementia has changed many parts of Michael’s life, he remains busy and active with the help of his family and support workers. He loves getting involved in different activities like swimming, playing uno, bingo, boccia, skittles and lots more. He volunteers weekly on his Enrych support sessions at Hough Mill Swannington and has received The King's Award for Voluntary Service for his dedication! Thanks to the support of Enrych support workers, Michael can keep active, try new things, and continue doing the activities that bring him joy, whilst giving his family well deserved respite time. He also attends a Young Onset Dementia Support Group hosted by the ShuttleWood Clarke Foundation – Mary says “attending this group has made such a difference.”

Left To Right [Simon; Support Worker & Michael]

Living with dementia at a young age brings unique challenges. Michael wears a dementia lanyard to show that he has a hidden disability, yet strangers sometimes refuse to believe he has dementia because of his age and appearance. On several occasions, this disbelief has led to people reacting harshly, questioning him, or treating him unfairly. For his mum Mary, this is one of the biggest fears — that a lack of understanding could put Michael at risk.

Mary explains: “One of the hardest things has been dealing with misunderstanding and judgment from others. People don’t always believe he’s unwell. Even with his lanyard, he’s faced contempt and cruel behaviour.”

Caroline’s message is simple: “Talk first, don’t assume.”

Mary adds: “Remember that dementia is a hidden disability. They might be frightened or need your help.”

Dementia can affect the way someone speaks, behaves, or understands a conversation. At times, this may mean a person responds in ways that seem unusual or inappropriate. That’s why compassion is so important. It might mean slowing down your speech, using shorter sentences, or simply showing patience. Above all, we need a world where kindness comes first. Dementia is a hidden disability that can affect anyone at any stage of life — and understanding, patience, and compassion can make all the difference to those whose lives are affected.

For Michael’s family, strength lies in unity. “We group together and do what we can,” says Caroline. Between them — Mary, Caroline, Phil and Pete — they ensure Michael always has companionship, purpose, and the reassurance of knowing he is loved. His journey is a powerful reminder that dementia can affect anyone, disrupting careers, family life, and hobbies far earlier than most expect. Yet with awareness, support, and a compassionate community, people living with dementia can continue to enjoy active, fulfilling lives.

Right To Left [Michael, Jill, Caroline, Isaac, Phil, Pete & Mary]

If you or a loved one has been affected by young onset dementia, help is available:

National Support

• Dementia UK Helpline (Admiral Nurses): 0800 888 6678 (free, open 7 days a week)

Local Support Groups  (Leicestershire)

• Shuttlewood Clarke Young Onset Dementia Support Group

  
  

  A free social group for people under 70 living with dementia.

  
  

  📍 Ulverscroft Activity Centre, Markfield (3rd Thursday of the month – 1.00pm - 2.30pm)

  
  

  📞 07860 639693 or 01530 244914

  
  

  ✉️ kathleen@shuttlewood-clarke.org

• Young Onset Activity Group (Age UK)

  
  

  For people under 65 with mild to moderate symptoms and their carers.

  
  

  📍 Brockington College, Leicester (4th Tuesday of each month, 6:30–8pm)

  
  

  📞 0116 223 7363

  
  

  ✉️ dementia.support@ageukleics.org.uk