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Facing Dementia at 49: My Journey and the Stigma We Must Overcome
2025-01-29
Author: Daniel
Facing Dementia at 49: My Journey and the Stigma We Must Overcome
In a candid and inspiring account, Peter Alexander opens up about his unexpected diagnosis of dementia at the age of 49. Now 56, Peter has made it his mission to shine a light on the often misunderstood condition and challenge the stigma attached to dementia, particularly the misconception that it only affects the elderly.
"I might not always be able to express it in the same way, but I'm still the same person I was. Inside, I'm still Peter," he asserts, emphasizing the importance of recognizing the individual behind the diagnosis.
Peter, originally from England, relocated to Northern Ireland with his wife, Jill. His journey began with subtle signs that something was off—struggles with deadlines and difficulty finding words during meetings. It wasn’t until a visit to a neurologist that he received a diagnosis of Frontotemporal dementia on January 14, 2018. The news was devastating; it meant stepping away from work due to concerns about his judgment and behavior. “It was a lot to adapt to,” he reflects.
Frontotemporal dementia is a less common type of dementia that primarily affects behavior and language skills. "There's a stereotype that dementia is just forgetting things, but it's much more complex," Peter explains. He emphasizes the need for society to see the person beyond the illness and not treat them differently.
According to the Alzheimer's Society, over 22,000 individuals are currently living with dementia in Northern Ireland, and this number is expected to surge to 60,000 by 2051. Alarmingly, dementia is often viewed as a condition that primarily impacts the elderly, yet approximately 5% of dementia cases fall into the category of young-onset dementia, which affects people under the age of 65. It is estimated that more than 70,000 individuals in the UK are living with this specific form of dementia.
To tackle the stigma and raise awareness, Peter has collaborated with others living with dementia to create a compelling documentary titled "Hear Our Voice." This film focuses on the everyday experiences of those with young-onset dementia, aiming to foster understanding and empathy among the public. Peter plays a vital role in the film, narrating his and his peers' experiences while emphasizing their capabilities rather than disabilities.
Esteemed psychiatrist Dr. Christopher Southwell has hailed the documentary for its powerful message about the realities of dementia, stating that it highlights areas where health professionals can improve their support for patients and their families. Members of Dementia NI, a group founded in 2015 to amplify the voices of those with dementia, worked closely with health trusts to make the film a reality.
Recently, Peter and other members of Dementia NI met with Health Minister Mike Nesbitt at Stormont, advocating for a reduction in diagnosis times for dementia. The Minister expressed his gratitude for the documentary's development, acknowledging its potential to challenge stereotypes and educate the public on supporting those living with the condition.
Karen Kerr, head of engagement at Dementia NI, stresses the importance of an early diagnosis, which can open up opportunities for individuals to live fulfilling lives with purpose. With voices like Peter's making a significant impact, there is a growing movement to reshape society's perception of dementia. “When it comes to people like me with dementia, please don’t write us off. We have a voice, and dementia doesn’t define us,” Peter concludes, inspiring us all to listen and learn from those living with this condition.
In a world where stigma often silences the afflicted, Peter Alexander stands as a testament to resilience and hope, proving that a dementia diagnosis is not the end but an invitation to deeper understanding and connection.