At just 12 years old, John Ramsay faced the life-altering moment when his father, David, was diagnosed with young-onset dementia at the age of 52. With Dementia Action Week approaching (May 19-25), John shares heartfelt insights from his journey, offering guidance to others confronting similar experiences.
Young-onset dementia refers to dementia symptoms emerging before age 65, typically between 45 and 65, but it can affect younger individuals as well. In the UK alone, over 70,800 people live with this condition, according to Alzheimer’s Society.
Over a decade, John witnessed his father’s gradual decline and eventually became his caregiver until David’s passing at 63. Reflecting on those early years, John recalls them as “traumatic,” especially having previously seen his grandmother’s struggle with Alzheimer’s disease.
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“It was really difficult when my dad’s diagnosis was confirmed,” John recalls. “He was a respected orthodontic consultant at Guy’s and St Thomas’ Hospital, at the peak of his career. To watch him go from treating patients to not being able to work or drive was heart-wrenching.”
As a teenager grappling with personal growth and identity, John found it especially painful knowing he couldn’t rely on his father the way many teens do. This profound loss shaped his path, inspiring him to lead Social-Ability, an organisation dedicated to improving life for people living with dementia.
John often hears from families overwhelmed by a dementia diagnosis. His advice stems from hard-earned wisdom: “It’s okay to feel sad, angry, or upset. A diagnosis doesn’t change who the person is overnight—they’re still the same individual, just facing new challenges. Accepting those emotions and seeking support is crucial to maintaining relationships.”
He stresses the importance of early diagnosis and exploring available community support. “For us, small breaks, like dad attending church or neighbours taking him out for bridge or golf, made a huge difference. Planning how your loved one wants to live their life and understanding your own resources can help make the journey more manageable.”
John encourages caregivers to find strategies for moments of distress, such as engaging a loved one with familiar stories, favorite TV shows—his father loved certain episodes of Friends—or music, which can bring comfort and connection.
“There’s still a person there, even as dementia progresses slowly. Treasure the time you have today because although the path ahead can be tough, those moments of joy and recognition remain invaluable.”
The NHS highlights that memory issues alone aren’t always dementia, but if forgetfulness impacts daily life, especially for those over 65, consulting a GP is essential. Dementia affects memory, speech, thinking, emotions, and behaviour, with Alzheimer’s disease being the most common form.
Symptoms may include difficulty with planning, personality changes, withdrawal from social activities, or hallucinations. As dementia progresses, individuals often need increased support with daily tasks and communication. While there’s no cure, early diagnosis can help slow progression and improve quality of life through appropriate treatment and planning.
John’s story is a powerful reminder of the resilience required to face dementia and the importance of compassion, understanding, and community in navigating its challenges.